Hospice Ain't What it Used to Be

Dad and I met with the hospice admissions nurse tonight at his house. She asked him a lot of questions and he was able to participate in the interview. After we went over his symptoms, she said, "How would you like it if we could provide you some additional services over what you are getting here?" He said, "Fine." She said, "We could have someone come in and see you five days a week helping you with showering, shaving, making sure you get you skin moisturized with lotion. All kinds of things." I told her I would like his meds reviewed so we could discontinue anything he doesn't need. So we got out his list (about ten different ones every day) and figured out which ones to quit. He was very much for that.

We finally got around to the word "hospice" and he said, "You think I need hospice?" to her. She said, "Do you feelings about hospice?" and he said, "It's scary. It means I'm going to die right away." She was very honest with him, "We all do sometime." I said, "It might not be soon Daddy. It could be many months." The intake nurse was very soothing, "Hospice doesn't mean you're going to die right away. It might not be months; I've known people in hospice for three years. All it means is that we will provide you with services and help you avoid going to the hospital. If you have a fall, we can come here and take an X-ray. We can make sure you are comfortable. If you change your mind and decide you are getting better and want to go to rehab, you can discontinue hospice."

All this was news to me. It used to be a lot more black and white. I told her in our prior dealings they said to him he had to agree not to take Mother to the hospital for any reason, in order to get hospice care. She said, "That's not the case anymore. You might change your mind and decide you want to go to the hospital. And you can always get back into hospice care after you get out."

He was then taken to dinner. She and I continued our discussion. She would start us tomorrow with daily visitation. I told her I'd like someone to take him for walks outside and play cards. She said if he was agitated at night and hopping out of bed, they could have someone come out and sit with him within an hour. She said the falls and catastrophes always seem to happen at night. She said if he has a fall, they could have someone there within an hour to calm him down and take and x-ray. By taking over his cleaning they would take some of the work off the in-house caregivers. She said sometimes people improve because of all the additional attention. He qualifies because he has an illness he will not recover from. Hospice used to be a death sentence, but it's basically just a word.

In my view, it fills the gap between what he currently gets with assisted living and what he might have gotten in a nursing home with more qualified and numbered nurses. All paid for by Medicare. He also gets to keep his doctor, but also gets a hospice doctor. If Dad needs a doctor to come out for an emergency in the middle of the night, they have someone on call 24 hours per day, and their doctors answer the phone.

I had seen other residents who had dedicated caregivers who came over every day to entertain them. I always thought, "I bet that's pricey! Just having someone come to watch him sleep is $16 - $20 per hour! I wish we could have a little buddy for him, but we could never afford it. Dad needs friends outside of me coming over to visit. We all do!" Now Dad can have that.

As my sister said to me tonight, I just don't see a downside! This is my Christmas present to Dad. The admissions nurse felt the key was downplaying the word "hospice" and pretty soon he would love it.

Attempted to Contact Hospice to Talk about David

Back in the spring of 2010 David was in the hospital for the first fall. At one point during his time in rehab he asked us to call hospice. He wanted to go ahead and die. He was extremely depressed at that point and I believe he thought that hospice would take measures to end his life. My sister and I discussed the matter and I told her hospice doesn't take measures to end a person's life, but if a person chooses to die by starvation, they help that person stay as comfortable as possible. I also stated that he was delirious (he thought he was in a prison and that the guards were trying to kill him, or in a hotel and the nurses were the cast of a theater production). I said if he chose one minute to end his life through starvation, he'd be asking for french fries two days later. He wasn't close to death; therefore, this was a momentary thought.

This is a different day and a different situation. He has a housemate who's daughter rushed her father to the hospital for his fourth trip to the hospital for his fourth heart attack this year. He's Dad's age. He's been in ICU for three weeks now. I mentioned to the caregivers that I didn't want Dad resuscitated or whisked to the hospital if he stopped breathing (as did her father). That I was going on vacation shortly and I just wanted to reiterate our wishes. They had me rewrite a Do Not Resuscitate letter, but stated the call of whether or not to take him to the hospital was with the doctor, unless he was in hospice's care(!) They appeared nervous to be having the conversation.

I had to do a little soul searching on that one. Hospice? Dad is actually thinner than the last video. I asked the manager if he was eating. I felt his shoulders and arms through his shirt and there is no meat at all there. His legs are completely atrophied. Sticks for bones and big knees. The manager said he ate his cereal every day. Since I am of the "Feeding Tube Out" school of dying with dignity, I decided it was time to so a little research on hospice (of which I know very little.) Our past experience with hospice is that the family acts as the nurses and caregivers up to the bitter end. I am already breaking that pattern now with the group home, but maybe it IS time to call in hospice. (He can receive it care in his current home.)

I went to the web and found on one hospice site (there are many) a list of tips for when you know it's time.

Frequent trips to the emergency room or a recent hospitalization
Decreasing appetite and weight loss
Increasing weakness or falls
Requiring more help with everyday activities
Multiple changes and adjustments to medications because of ineffectiveness or an increase in the number of medications required to control symptoms
Increasing shortness of breath or need for oxygen most or all of the time.
Family feeling overwhelmed and in need of more resources.

Here's a few that I would add:

Living a life no sane person would choose
No chance for improvement
Mental anguish beyond what one should have to endure most of the time

Here was more criteria per the website:

In order to receive hospice care, the patient must:
Be diagnosed with a terminal illness including, heart disease, neurological disease, lung disease, renal disease, cancer, Alzheimer’s, dementia or other conditions.
Have a medical referral from a physician.
Have a life expectancy of six months or less.
Have a desire for comfort-oriented care rather than curative, aggressive treatment.

He will not be cured, regardless of the treatment.

Another quote from the website that spoke to me was:
"The earlier you call, the more we can do to help you. Often, we hear from families that they wished they had known about hospice services earlier. We’re glad you found us; you have made a positive step in affirming the value of life."

In every case so far in which one of our family members was dying (Dad's number four), the designated caregivers kept holding out hope for a miracle (Cindy's case) or had unrealistic expectations with regard to life expectancy (Mother's case) or felt obligated to be the only caregiver because of the loved one's wishes. I'm not in denial about Dad's dying. If he lasts a year (doubtful) then I can live with being a few months off. Nor do I know what hospice can do that is very different from what he's currently getting. I just have to think it's more humane not to keep up what has basically become pushing food and meds on a man who doesn't want either. Having him take drugs to calm him down enough to force him to take MORE drugs cannot be the only option.

I will talk to hospice and his doctor next week to take the next step. Here's the website.

http://www.chot.org/site/402/when_is_it_time.aspx

If anyone would like to come see him, you can stay at my house in my guest bedroom anytime. Earle, Sarah and Mary came a week ago. I think it went pretty well.

I'm on Facebook. Please don't spell out the name of the blog. Just refer to it as DPW or "the blog" so we can protect Dad's and my anonymity.

David Has a Visit from His Psych Nurse

I went to visit Dad today and I commenced to working on my embroidery seat cover for my piano bench. (Take two legs of a pair of jeans, cut them open, sew them together....oops, wrong blog.) We were chatting about nothing much and eating some banana nut bread from Starbucks. I thought finger food would be more appropriate. Unfortunately, the remote was there on the table. He picked it up, thinking it was the banana bread and stuck it in his mouth and started chewing it. I was able to get it from him and hand him the banana bread. After the snack (and nearly broken teeth from the banana bread look alike TV remote) the psych nurse came through the door. I thought he might be someone's relative (a little Pakistani looking for this crowd, though) until he walked straight up to Dad and shook his hand. After introducing himself he started asking Dad lots of questions. It went as follows:

Who is this?

Barbara

How is she related to you?

Sister

Turn around and look at her. Is she really your sister?

Yes (Dad is not being coy. He's not acting confused either.)

Where are you?

Galveston

Actually David you are in Dallas (Dad doesn't think the nurse is lying. But he doesn't see how that's possible by his expression. He's trying to please this guy. He likes the company. He introduced him to me as the dentist.)

What month is this?

April

Do you see all these decorations? Does that help you?

September. Maybe October. Or November, or December.

Do you have a sister?

Yes

And What is her name?

Harriet (I nod yes over his shoulder.)

Do you have a brother?

Yes

What is his name.

Bill

No Daddy

Bob

No Daddy

Don

No Daddy

It IS DON!!!

Daddy, I'm going to give you a big fat hint. You have two that start with "E".

(No response.)

Do you have any daughters?

Yes

What are their names?

Melody and Amy (Melody pronounced Melanie)

Which is the oldest? (This was a bit of a tricky question given that Cindy was technically the oldest during the growing up years. He paused.)

Melody

Which one is this one?

Melody

After the questions of Dad, he asked me what happened to him, and whether he had had a stroke. I told him about the falls starting in Houston in the spring, the 24 hours he lay on the floor without anyone noticing until the newspapers started piling up in front of his door (thank God for observant neighbor ladies). He thought maybe he'd had a stroke due to the drooling. I siad no, he has Parkinson's with dementia. I told him that, in Houston, he became an escape artist and his assisted living facility wouldn't accept liability for him any longer, so we moved him to Dallas. Two weeks after the move he fell again, this time breaking his hip and going to the hospital again. I told him, at this point, he mentally fell off the cliff completely. I advised he'd been diagnosed with dementia three years ago. His diagnosis is Parkinson's with dementia. He went back to asking Dad questions.

How was your marriage?

No answer.

How long were you married?

62 years.

No Daddy, Mom was 17 when you married, she died at 61, so however that comes out mathematically is how long you were married. Like 43 years. Something like that.

NURSE: How old was she?

30

No she wasn't, Daddy.

15

She was 17 and your were 24, Daddy.

NURSE: The police could have come after you. (Tongue in cheek.) Was it a good marriage? When did she die?

Ten years ago. Maybe 15.

1997, Dad. Pretty close. He took care of her 24 hours a day while she had bone marrow cancer. She couldn't move. He took good care of her. She lingered for four months. My aunt moved in for some of the time, and I came down on weekends. After she died, he sat and played bridge for two years online, so I showed him how to meet women online, to get him out of the house. He did pretty good with that for a couple of years. Helped him let go of Mom.

NURSE: They had online dating back then?

Yep. Match.com. You were on Match.com Dad.

NURSE: I never did that. I was too moral.

Daddy, Is Helen your girlfriend? (Perriwinkle hair, listening in on the psych assessment.)

No

I thought she was!

NURSE: I think she might have a crush on you.

OK, If you say so.

The nurse advised he was going to put him on a low dose of psychotropic meds for the hallucinations and agitation (and this is without seeing the remote in the mouth episode!) I gathered that when I'm not there things were not very informative. In truth, we just sort of lucked out today. He was getting a lot wrong, but at least he was cooperative. Some of his personality showed up. Good. He's still in there. Don, Bill, hope you like the blog!

Dave's First Thanksgiving in His New Home!

I went to Dad's house for Thanksgiving because (1) I have no way to transport him and (2) I don't have to cook Thanksgiving dinner this way and (3) many of the residents were out with family today so there would be plenty of food for guests of those in the house. I did find out today that many of the residents' families lived out of state. This boggled my mind. Why would a son or daughter live out of state and NOT take their parent, who is in assisted living, to a facility closer to their home? It's like I told the manager today, a family member who is the primary "caregiver" doesn't have to do much (if they can afford a separate home.) But they do have to show up once in a while and be in the loved one's presence. I mean, sure, they don't have to, but what possible justification could their be for keeping them long distance?

OK, so maybe Mom can't handle the northern temperature anymore. Maybe. Or maybe Mom loves her friends where she is. But...these moms don't know who's sitting at the table half the time. I guaranty she'd pick a daughter or son over her housemate.

So I had dinner with Dad and we had turkey, dressing the whole nine yards, along with all the other residents who were in the same shape as Dad. We sat at the table with the man who stays in his room (except for occasional meals) and his daughter who generally lives in his room with him. We had a little chat. She thought it would be an improvement in Dad's quality of life if he were to be allowed to stand. All he wants to do is stand. I tried to keep an open mind. But, he also wants to walk out of the house, climb out the window, jump out of bed, dance, and anything else that lands him on the ground. I just nodded. I said we missed the window of opportunity because he couldn't be alert enough for rehab when the physical therapist was coming around, and the management of the house didn't want to incur the liability (and as an underwriter, I completely understand) by standing him up for "exercise." She volunteered to stand him up with me, one on each side. I know she means well. I have no doubt she is trying to help us. However, our dads are very very different guys. Her dad is not very demented and not trying to escape.

I also think that if Dad does a lot of standing, he will convince himself that he can safely stand, walk, etc., and then when he has another fall and has to be denied standing again or restrained further, isn't he just going to feel more defeated? Punished?

He's had a lot of agitation lately so they have doubled his Exelon. If they hadn't told me so, I wouldn't have picked up on it. He's not groggy. Other than when we took the video, he was somewhat talkative. Of course, the talk was about things like a horse race that had taken place in Galveston at American International where the riders were not given a bonus and he needed me to write a letter to the millionaire down there to make sure they got paid, and the four people from his home who were kidnapped this week, including him. When I asked whether the kidnappers fed him, he said, "Very well!" I'm getting better and better at just "going with it." When I cannot understand what he is saying (often the case) I just say "hmmm". Or "probably so." One of the things we learned in the dementia lecture the week before last was to avoid confrontation. To do that you don't say yes and don't say no. Say, "Tell me more about that, " or "I'll look into it," or "It's possible." And the lecturer was so so right. A day without confrontation over something like whether the green, blue, and red wires he's picking out of the turkey and dressing actually exist is an improvement over one with confrontation. When he then demanded that the caregiver get a paper towel and wipe all the wires out of his meal I just deflected, "Man, this cranberry sauce is unbelievable! Who made this??" Fight over. Dad's next words: "Best I've ever had."

The caregivers are good at making Dad feel special. They asked how he kept his weight off (given that they were both in the larger than life category). I said, "By chewing his food and spitting it out." He said he kept fit by working out a lot. Maybe he was thinking of the dancing he and mother used to do(?) The funny part is that these gals wait on him night and day. They know exactly how much he works out. He doesn't even use his arms to move the wheelchair. They laughed and conceded that he stayed "busy" (always fidgeting with something or struggling to get out of his chair.)

I picked out the movie Grease and the caregivers and I laughed all the way through. I sang along with the movie while working on an embroidered pillow. Dad wanted to go through my embroidery skeins (thinking they were candy) and he took out about ten from the bag, strewing them around the house. One of his sweet little housemates (periwinkle hair) asked me if I had a car. I said yes. She whispered that she wanted me to take her home. I said OK. I asked her if her house was in Dallas, to which she said, "Oh, we sold it." She would glance my way throughout the movie like, "Let me know when it's time to go." Dad asked me for Mom's number. I couldn't believe they weren't taking a big after-Thanksgiving-dinner nap. I'm afraid I got her hopes up about going home. Before I left, I noticed Dad was holding onto her wheelchair (still sitting in his own) as she was crossing the living room. They had a little train going. I don't know if she knew she had a passenger.

I hope everybody who reads my blog had a fantastic Thanksgiving. Mine was great. All I have to do is get out of the way and let it unfold.

Free Concert for Dave

I went to a dementia lecture on diagnosis and treatment which was sponsored by the Alzheimer’s Association. The speaker was a doctor who specializes in the treatment of dementia. She had a lot of very good points as far as treatment went, but I think the one I agreed with her most on was not to over treat. For example, feeding tubes do not prolong life (and I cannot imagine anything more uncomfortable.)

Here’s the gist of the talk:
1. Go to the hospital or rehab as sparingly as possible. (Believe me, we GET that.)
2. Starvation means they are coming to the end of their disease. (That's selective verbiage. I guess most people don't like to see their parents as dying.)
3. The question of "when do you move them" came up. She said "when they’re ready for assisted living. Otherwise, what's the point?" I guess the point in our case for going to independent living was so he could get meals made for him. Some people will cook for themselves, but I think Dad never was that self sufficient.
4. Don't overtreat. She said sleep aids like Ambien and Tylenol PM hamper memory. All us caregivers stared at each other over that one. We all like these on occasion.

Saturday I went to the Memory Walk at the Dallas Zoo. I had raised $375 for research and THANK YOU to all who contributed.

On Sunday Julie and I went over to Dad’s to give him a little concert of the duets we’ve been working on. At first I think he was afraid of Julie and started wheeling himself away from us and out of the living room. Dad gets it in his head that strangers are terrorists. I see more and more why the news is never on in these facilities. It just gets the tenants riled up. So one of the other daughters rolled him back to where we were seated. As we played, Dad became agitated, trying to pull the arm off his wheelchair and thrashing his other hand into the couch I was sitting on while playing. I finally said, “Dad, could you please stop slamming yourself into the couch?” It went on for another ten minutes. The music, being baroque, tends to put people to sleep. But not this crowd. One of the other residents came up and said, “So START why don’t ya??!” and “You’re losing your audience! So start why doncha?” in a thick Brooklyn accent. She couldn’t hear or see that we’d been at it for twenty minutes. What I find is that it’s taboo to have a belly laugh over this stuff, but I simply couldn’t help it. We’re always supposed to be on guard not to offend the residents, but it’s a pretty bizarre environment. One little drama queen became freaked out when she thought no one would come back to paint her nails. This went on for five or ten minutes, and Julie and I were still holding it together musically. Once we got to “Ode to Joy” I asked, “Are any of you Beethoven fans?” Dead silence. One of the caregivers finally said, “Not anymore.” She’s pretty OK with not requiring the “correct” level of seriousness, gloom, and pretence of normalcy that most family members seem to be able to keep up. The only resident that could hear us was Dad, and he was busy tearing the arm off the couch.

Julie and I left once dinner was served, and we both agreed this was an excellent place to practice. For one thing, there’s constant distraction, so it forces you to go above and beyond with focusing on the music and each other (as is a must for playing duets.) Secondly, there’s zero need for self-consciousness. If you blow five bars of music or forget to sharpen an F, no one catches it. This way we can work up to more discerning crowds. Julie, as usual, sounded like a symphonic player, which she used to be.

These Are a Few of My Favorite Things

I went to the support group for the Alzheimer's Association at one of the memory care facilities around town on Tuesday night. I guess it had been a couple of months since I'd been to this one, and they all remembered me. I saw my pal who's had her mom living in the house for fifteen years with first cancer and now Alzheimer's. Mom's finally bonded with her new caregiver and lets her take her out and about to shopping centers. My mantra is "Let the parent adjust." If you never change anything, or get them outside of their comfort zone, they have no reason to do so. The initial response will probably never be, "Great idea! Why didn't I think of that?" At work we say, "It's easier to ask for forgiveness than it is is to get permission."

I met two new spouses of residents there. One who's wife has found a new "gentleman friend". She thinks her husband is her brother. He is taking it like a champ. I think this would be tough, but for those of us around the relative, we know it's not within their control. He's just happy she gains some comfort from this other resident. If you haven't seen the movie "Away from Her," this is the story with Julie Christie as the star. Our little group talked about good movies and books to help us gain a better understanding of what this is like for others going through this. Another is Still Alice. We had almost all read this one. (SPOILER ALERT, GO TO THE NEXT PARAGRAPH IF YOU WANT TO READ THIS BOOK AND HAVE NOT YET DONE SO!) I talked about how the main character had been diagnosed with Alzheimer's, and being a neuroscientist, planned her own suicide when it got to the point where she couldn't answer a list of questions. But by the time she got to that point, she couldn't remember the plan (or that she had one.) No one passed negative judgement, at least vocally. Nor did we go into further discussion about this. I later found out that the group was extremely religious. As in, they all went to the same church and one was married to a famous preacher's private physician. But no one gasped at the thought of suicide with this disease. The deal is, by the time you're out of denial, it's probably too late to make choices for yourself about anything, much less ending your life. And nobody else can help you pull it off without risking themselves legally. My mother begged me to kill her (repeatedly) when she was ill with cancer (and it wasn't the morphine talking.) I knew there was no way to assist her without Dad having me thrown in jail. The guilt of not assisting is terrible.

We did talk about the reasons most people with Alzheimer's die. It's basically from starvation. The other thing I had heard of was pneumonia. Or infections from inhaling food while swallowing. This came up because I pointed out Dad appears to be slowly starving to death. I mean, just look at the videos. He's always been a spotty eater. His thing now is spitting out food after chewing it awhile.

We also talked about diagnosis, and did it matter? We discussed how dementia was the "symptom" of a whole host of diseases. Alzheimer's was just one of the diseases. The group leader said that the only benefit to getting an accurate diagnosis was to get medication prescribed. Otherwise it didn't matter. You just deal with the symptoms. The medication for dementia or Alzheimer's masks the symptoms, but the disease is still progressing at it's normal pace. There is no way to slow it down or halt the progression. Once the disease progresses to the point where the meds can no longer cover up the symptoms, then the person has a huge drop in cognitive function and you see how bad off they really are. I didn't open my mouth, but in my case, I got to problem with masking symptoms. The longer I can hold off drooling or screaming or hallucinating, the better. Bring on the meds. In Dad's case, he has Parkinson's with dementia, and possibly Alzheimer's. I know one thing, the dementia is what is killing him faster, whatever the diagnosis. For example, Michael J. Fox has Parkinson's, but he's dementia-free. Mohammad Ali's family is in denial about the dementia. "He's sharp as a tack." Give me a break. Bottom line, with Parkinson's the dementia is secondary if addressed at all. With Alzheimer's treatment we cut to the chase and focus on the dementia primarily.

I asked my pal if she had considered moving her mom elsewhere. She said it wasn't to that point yet. Wasn't to what point? Destroying her marriage? Or her mom could still swallow? She justified it by saying she'd had her mom's mom living in the house when her husband died. Well, I got that topped (exactly my point! My grandmother drove my mother nuts by living with her her whole life....) but I didn't pursue it. To each his own. I told them I was going to Dad's house every two weeks now. The gentleman who's wife had the boyfriend thought that was a bit light. I said, "He's my dad. I'm not married to him. He needs to have his own life and I need to have mine. It would be different if it were my boyfriend." Fortunately we can be pretty open with each other in this way. I feel sorry for him. It's pretty obvious he's right behind his wife from a memory loss standpoint.

Two weeks ago I had told the caregivers at his house that if they wanted to fatten him up, they needed to feed him cheese enchiladas and Cici's pizza. The manager said, "Man after my own heart." The night I was at the Alzheimer's group, she made him a batch of enchiladas. He ate the whole plate and the rice. Then he started puttering around the kitchen. She said, "Whatcha lookin' for Dave? Ya want some more?" And he said yes, so she gave him another plate full and he ate that, too. People are pretty uncomplicated. People with dementia are probably more so. Just do like you would a dog or a two year old. Lots of happy talking, little pats on the knee, and comfort food. That "treat 'em like an adult" stuff? Forget it.

So I went to pay his rent on Wednesday and he was alert. I called my sister to have him chat with her, and it's pretty clear that if someone is not in the room directly in front of him, he can't really have a meaningful conversation. He is finding ways to have fun with the other residents there (he played dominoes last week I heard, and he walked all the way down a hall twice with lots of assistance.) One of the things he was doing to one of the ladies was taking her walker and wheeling it away from her. I think this is the demented version of pulling pigtails. She kept saying if she got it back she would brain him with it. He continued to wheel it out of her reach. He was starving for his pancakes, and they finally cut them up and put them down in front of him at which time I went to work.

Today I brought over some pumpkin pie. He ate a large piece and I had a piece myself. He had had another fall two nights ago when he stood up in his wheelchair and came down on his hands and knees. He was still tied to his chair by his belt. They found him with his legs up halfway out a door. The poor young male caregiver was freaked out when he called the manager to tell her what happened. Fortunately, it was not a catastrophe and he was not hurt. I'm guessing that he got the belt down around his lower legs and maybe just came down forward on his knees to crawl away from him chair. He was talking and in no pain afterward. He never called for help. They have started tying the belt around his waist and looping it around one of the metal rails on the chair so he can't get it off. The young male caregiver has dubbed him Houdini and Dad likes that nickname. He's still persistent about stripping to bypass alarms (they can't attach it to his skin, just his shirts), and trying to climb out of bed. However, I think this new staff has done a better job of responding to alarms. They are pretty attached to him.

I will be in the Memory Walk on November 13th at the Dallas Zoo. Please donate to my walk! Here's the link to do so! We have no cure for this. However, they are closer to a vaccine you and me to protect us from this.

http://memorywalk2010.kintera.org/faf/search/searchParticipants.asp?ievent=424793&lis=0&kntae424793=9372ED21AAED40EF929BE2F55106A25D

Thanks to all have supported me in this walk. It makes me feel like I'm doing something productive!

David Goes to a Garage Sale

I went to see Dad this morning and he was a bit groggy. I spoke with the new manager who has been with the company for nine years. She told me that in the morning he is less alert and that in the afternoon he is more coherent. He was playing dominoes the other day with the rest of the tenants in the afternoon! I think it has been better for him and for me that I cut down the visits to once every two weeks. He's happier to see me and I am happier to see him.

I showed him my latest painting (Marilyn Monroe) and chatted a little bit. I'm learning that if I follow the Alzheimer's Association's instructions on how to communicate with a person with dementia, such as making sure we have eye contact and watching him form his words rather than just listening, we have a higher success rate of understanding one another. Much higher. And of course getting him to see me form my words. Other tips are to never correct him or explain anything (a toughy) and always talk to him with respect (very very tough) like he's an adult (oh come ON.) But I'm trying to be teachable. And we have lots of teachable moments. I'm trying not to listen to the side of me that wants to say, "But....if I'm treating him with respect and like an adult, how am I NOT supposed to correct him when he asks me how Alan, my husband, is doing?" (COUSIN Alan?? And of course I don't remember about not correcting/explaining until I tell him Alan is married and living in Colorado and has horses.) Once I told him he meant Leonidas we were on track. I guess the point is that his being factual doesn't matter. The other tip is to hang out in HIS world. In his world, this all makes sense. So the idea is to treat him like an adult, with respect, in accordance with his reality. Do I want to be happy or do I want to be right?

So we go on a walk through the neighborhood and we look at all the houses and yards and talk about which ones we like, who's got a nice yard, who has a crummy yard, how the weather is cooling down, and finally I see....(can it be) a garage sale! And the best kind of garage sale: one with a slew of 16x20 usable frames with crummy outdated prints for (be still my heart!!) $5.00 each! So I ask him if he wants to go have a look, and even though he automatically says NO I very respectfully tell him that I have to get a closer look at all the "pretty art work". The other tip is deflection, and I am becoming pretty astute at this one. We spend another ten minutes looking at stuff and I also see a handcarved chair right out of Antiques Roadshow that I need to come back for. $25.00! So we go back to the house.

Once we are back, I sit next to him and ask him to help me work a crossword puzzle. He falls asleep and then wakes up and starts paddling around the house. So I know it's time to go. After some pictures and a hug, I bolted over to the ATM and back to the garage sale. Got the chair and the last two frames. Talk about bonus points!

Alzheimer's Memory Walk

We will be walking on November 13, 2010 at the Dallas Zoo. I would love for you to participate or donate! Here is the link: http://memorywalk2010.kintera.org/faf/login/partMenu.asp?ievent=424793&lis=0&kntae424793=2CF90B564AA24274AAB6591DA183CC46

We are trying to raise $300 or more! Please help us do what we can.

A Lose-Lose Proposition

Dad's alertness is improved, but some of the behaviors are also back, such as getting up every fifteen minutes at night and trying to get out of bed. Some nights he sleeps all night and some nights he's unable to sleep. I noticed on the daddycam all week that he likes to get away from the living room where everyone else is sitting. He goes into various bathrooms and gets stuck in there. Last week I timed the situation to see how long it would take someone to go looking for him. It was about 40 minutes. Since they put every one's meds up in a safe place, I don't guess there's anything too dangerous about sitting in a wheelchair in a dark bathroom for an hour (checking out nail polish and hair spray?)

I went to see him today. He's obsessive about taking off his shoes and his socks and messing with his feet. He cannot put socks and shoes back on. So I brought over a pecan pie, and sat and had a piece with him. He has regained his ability to feed himself with utensils, although halfway through he prefers to eat it with his fingers. I think with the dementia comes an inability to do what we would normally consider super easy tasks. When I asked him to put his socks on so we could go outside with the wheelchair, he got one sock on one of the footrest of the wheelchair, and when I pointed out that he needed to put the sock on his foot he said "I DID!" From the Alzheimer's literature I've been reading, these tasks are more complex than we would think. Since the neurons are no longer firing, a lot of these skills are gone. And it's not reversible. We might have slowed the progress down with medication, but the disease will march on. So I took him on the "walk" without socks. I've got to pick my battles, and "socks on" is not a big deal. Nor am I touching those feet. Sorry.

So we got outside and into the empty residential street in front of the house. I felt that since he no longer gets any physical therapy (I'll get back to that in a minute) it would be to his advantage to get some cardio by rolling himself in the wheelchair down the street. It would be nice to see him move independently. So I tried to encourage him to come toward me in the street. Unfortunately, the street was a little bit humped in the center line, so he kept rolling to the curb. Nor could he compensate by using both arms, or one more than the other to turn. The more I tried to explain it, the angrier he became. So I moved to the other side of the cul de sac and tried again on a more level surface. He wouldn't let go of the brake on the left side, and when I told him to put his hand on the wheel rather than the brake he said he was. By now he was fuming and went on about being old and not able to do anything (and therefore I was being unreasonable to ask it.) I should have dropped it long before this point, but I wanted him to get the hang of this. But it wasn't meant to be. He was so irate (as was I) that he was completely mishandling the chair (refusing to let go of the brake on one side while rolling with the other side) and I noticed he was bleeding. His arms are frequently covered with sores from his thin skin and aspirin therapy, and one of the scabs had been scraped off. I gave up at this point and took him back to the house saying, "I can't help you." Then I went home. My heart was in the right place, but there is no good manual on how to handle such a lose-lose situation. He loses because he gets no exercise and therefore little oxygen to the brain. I lose because trying to be "helpful" never goes unpunished in our situation. I gather the answer is to let him go at his own pace. Which is stopped.

I spoke with one of my watercolor classmates who just had a hip replacement. I told him about Dad's hip fracture and going to the hospital this summer. I told him how he did poorly in rehab because his mind was so far gone that he couldn't understand what was happening and fought the staff every step of the way. My buddy said that he had to work his ass off in rehab, and that if he hadn't had the balance or the wherewithal to give it 110%, he would not have been able to recover. The hip recovery requires a willingness to suffer in pain in order to get back on your feet for hours a day. I knew as he was telling me this Dad never had a chance. The only thing going for him was that it was a break and not a replacement. Without the ability to withstand ongoing pain, or balance, or follow instructions, what could possibly go right? The other thing working against him was his own problem with authority. If someone is telling him what to do, even if it's life saving information, he will refuse. He sees it as somehow "losing" to go along with someone else's instructions. This has always been part of his make-up.

Nowhere was it more obvious than on the first fall this spring. Dad had fallen in the living room of his apartment. Back then he was not yet in assisted living. He crawled to the bedroom and lay on the floor for 24 hours next to the wall from which hung the pull cord, which he would need to use to summon help. No one knows whether he just didn't want to use the cord (help is for wimps) or whether he didn't know what it was for, or even more probable, never registered that there was a cord. I know one thing, in his present house, we've talked about the cord repeatedly when putting him to bed, and he just laughs it off like that's the last thing he'd use. At night he sets off the alarm to get out of bed every fifteen minutes and has never summoned the nurse with the pull cord.

One thing pointed out in the Alzheimer's support group meetings is that, if someone has a personality characteristic and they develop dementia, it becomes exaggerated. His characteristic is defiance, and I just have to accept it and not let it get to me. Watching someone kill themselves isn't fun (especially if I'm kind of a control freak anyway), but I can't let him drag me down with him. The answer is pacing and just blowing off things like trying to improve his health. "Acceptance is the key to all my problems today" -Alcoholics Anonymous

Caring for the Caregiver

Anybody can be a caregiver, but there is an special kind of caregiver role that can only be filled by one type of person, and that is a child, a sibling, or a spouse. Even if the ailing individual doesn't trust or like the person in that role (generally as a result of his or her illness), it's still important that the caring relative get past that and fill the role anyway. If the person is married, it goes to the spouse. If the person is widowed, it goes to the son or daughter. I don't know how my sister did it for ten years, but she did, and now it is my turn. Like I said, this role cannot be held by a non-relative.

I see a few family members who come into Dad's house on the daddycam. I see 220 pound men sitting next to their mothers in the middle of the day, holding their hands. In the first case I watched, I knew Mom had severe Alzheimer's and could not speak or recognize her son. I watched his head bent as he held her little hand. I believe he was crying. A few days later, I saw another son sitting in a chair in front of his own mom, holding her hands. At first I thought he was the doctor checking her out, but after thirty minutes, I knew he was her son. He was talking to her as well as he could, probably letting her lead the conversation as her reality was the only one available anymore.

I have a hard time having the same kind of tenderness toward my father, since he is pretty quick to push me or my sister away. I will let the caregivers be the hand holders. I do well to give him a little sideways hug or stroke of the head. Going over there and just being in his presence is what I'm pretty good at. The caregiver has to do the caring of a parent or spouse for themselves, because for the most part, it is a thankless job. As most caregivers will tell you, you don't get a lot of thanks from the ailing person, if any. They don't know that they are a pain in the butt.

So the key is, to build a support group. It's the caregiver's responsibility to make sure they have this. It's too stressful to try to caregive without support (and if you dad or mom is taking care of their spouse, you should be taking care of that caregiver/parent.) I have people ask me what they can do. Obviously, you can't take over their role if the parents live together. But here's some ideas.

WHAT MY BOYFRIEND DOES TO TAKE CARE OF ME:

My boyfriend doesn't like to be around Dad. And that's OK. He's off the hook. I would rather go over there alone, than have to worry about whether my boyfriend is having a good time, which he won't. He does other things for me, including acting as my private secretary. Because Dad takes up too much space in my head (is it not obvious?) my boyfriend acts as my memory jogger. For example, he asks, "When Eric is coming?" (in a Greek accent) in reference to my piano lesson. Or "What time is your yoga class?" (What yoga class?)

Which leads us into the next thing he does: encourages me to relieve my stress. He's a walkaholic, and after the yoga class today, we hiked for an hour in the hilly woods (also his suggestion.) It's one thing to know you need to relieve stress, it's another thing to go do it. I get tired of walking, even with this perfect weather, but I have a rule in this relationship, "Unless there's a really good reason to say no when asked to do something (by the boyfriend), just say yes." Not everybody has a mate that wants to walk with them. I just lucked out.

He lets me vent on our walks. I try not to wear him out, but all this blah blah blah has to go somewhere. You'd think he'd get overburdened with it, but in truth, he's my most dedicated blog reader. He's also the "tech guy" who does things to the videos so that they can be put on the blog. Just being a fan is a huge support. He lets me play with my hobbies, videos them, goes along to see my art shows and listens to me play piano while he cooks supper. His favorite channel is the food channel, and his hobbies are cooking, biking, learning about physics and riding the elliptical. Yes he does have a brother, who lives in Athens, and yes, he is single. And this brother is also a reader of David per Week. Brother is also a caregiver for his ailing mother, and does a beautiful job.

WHAT MY SISTER DOES TO TAKE CARE OF ME

My sister reads David per Week and sends me uplifting emails in response to every post. The best thing about being Dad's daughter-caregiver is that it has brought us together as best friends. Most of what I am going through, she has already gone through. I can be very honest with her about the whole situation. (The bog version was sanitized??!) Sometimes Dad puts me in a tizzy, and she lets me get it ALL out. Just by her being there, I have the ability to keep it up. One of us has to be that caregiver. There is no one else that can be his daughter. Although I know of some elderly people who have been abandoned by their children (other than monetarily) we would never allow that to happen. The worst case was that of Dad's ex-ladyfriend, who's son refused to allow for her to be taken off life support, but to my knowledge, never went to see her. She lived as a vegetable for two years.

WHAT THE EXTENDED FAMILY HAS DONE TO TAKE CARE OF ME

I have received supportive emails and stories of how my cousins, uncles, aunts and friends are going through many of the same things. We just didn't know we were in the same boat, or how big the boat was! Some have called Dad. Whether he had the wherewithal to participate in the conversation is totally beside the point. It helps ME to know he is being contacted by people who care about him.

WHAT THE ALZHEIMER'S ASSOCIATION HAS DONE TO TAKE CARE OF ME

I will keep going because they give me a way to be among the family-caregivers of the memory impaired. I also want to be helpful to people who are hurting in that group. It's one thing to be verbally abused by some nut-job in downtown Dallas while you are waiting for the train. It's another when that person is someone who is supposed to like you (like your mom); that you are making sacrifices for (like your wife.) This is where we get our batteries recharged and reminded that this is a disease and not something personal. It's just like alcoholism (without the easy fix of sobriety). The dumbest thing I can do is react harshly to it.

Thank you thank you thank you to all my caregivers and readers.

David Gets a Bit Odd Around Company

I played a small concert with my duet partner on guitar on Wednesday night at my watercolor class. I decided that, since she and I practice on Saturday afternoons anyway, why not go to Dad's house and put on the same little concert for him. We got there at 2:00 and he and one of his housemates were put in the backyard to listen. The housemate is a sweetie pie with, I think Parkinson's, but all of his marbles and flawless manners. He shared the pie with us last week.

As soon as we started Dad undid his brake and started rolling around the backyard pavement. I told the caregivers it was OK for him to wander off in the fenced backyard (I've got no problem with him working out his arms. This is the most alive I've seen him in weeks, thanks to the anti-anxiety meds being reduced.) The housemate was all ears. Eventually, after a few songs, the caregiver did come out and put him back in front of my buddy and me. He cried, "What did I do wrong? What did I do wrong?" I told him he didn't do anything wrong.

He went back to rolling off once she went in the house and decided it was a good time to start getting undressed. When he took the shirt off, it somehow set off the alarms. I redressed him but didn't know how to turn off the alarms. I couldn't play through that, and had to get the caregiver to turn off the alarm. She came out and let him chat with her while we played. I told my gal pal, "If you can play in front of this audience, you can play anywhere." She also took lots of videos of our playing.

He tried to get out of the wheelchair for the last half of the concert, as well as undressing. He was also bored to death.

While I'm very happy to have him regaining his wits, I am also hoping that he doesn't go back to sneaking out of bed and falling. I watched him on the daddycam this week trying to figure out how to open the windows in the hall. He's back to asking for a knife to cut off his restraining belt that keeps him from standing up from his wheelchair. I hated to see him shit faced over the three weeks, but the alternative is an extremely willful child who likes to play with matches and gasoline. Dad doesn't look strong, but his upper body is still strong enough to do some real damage if he gets mad. We'll just have to wait and see. If the falls are going to start up again, I think it will be sooner rather than later. If it happens it happens, and we'll just start over.

I gave his sweet little housemate a hug for being such an appreciative audience and for putting up with Dad all day every day. It can't be easy being Parkinsonian and half deaf in the world of the memory impaired. Believe me, there's memory impaired as in, "now why did I go into this bedroom?" and then there's MEMORY IMPAIRED. Dad called him Earle all afternoon.

Poo, I Got That Last One Wrong

So I called up the manager and she said she did not think that the person walking down the hall with the physical therapist was David. Poo. What does she know. I saw what I saw, and like I said, I was 90% sure. So I called the physcial therapist today and she said it was not my dad. It was the other gentleman.

I got on today and there was the same guy practically jogging down the hall. And the more I looked, the more I saw that it wasn't him.

Well, sorry group. He was all slumped over in the wheelchair contemplating his shoes yesterday. I wish it were better news, but it is what it is.

Flying Down the Hall with a Walker

I started watching Dad on the daddycams over at his place. Tuesday morning I see this person (looks like Dad? walks like Dad? but the clothes are not ones I recognize) going down the long hall with his physical therapist in front and the daughter of the man who lives in his room behind him with a chair (in case he suddenly collapses.) That's a good 30 feet! The hair is pretty unmistakable, but he's always got his face down. And the daughter is throwing me off a little bit (maybe it's her dad, but isn't her dad shorter than my dad? I've only caught a quick glimpse of him through the outside window to his room. These old skinny guys all look alike from any distance.) But I guess they've got a system down where she helps out in a pinch. And it IS my dad's usual therapy time. Finally I see that once he sits, they wheel him back to his room to start over and he did it again! They wouldn't have wheeled her dad to my dad's room, so I'm going to count it as a huge step for my dad and be done with it. That nose is pretty unmistakable, too.



Then they wheel him into the kitchen for standing practice against the sink. Poo! The camera is angled at the back of his head! So I watch him with the to ladies' help stand and sit holding onto the sink for some minutes. Then he goes to his room for a big nap until later. Well what do you know!



OK, I have some theories on why he rallied so well.



(1) He finally started sleeping at night. You know, if you're up all night and asleep all day, it's easy to say "I can't, I just can't" every time the physical therapist shows up. In fact it might be impossible to say anything else. She's there during the day only.



(2) He kicked the UTI. Of course, to make this happen you have to take the antibiotics and drink some fluids. Yes and yes to that.



(3) Vanity. I know this might be a surprise to many, but my dad is HIGH on the vanity scale. One reason he got so skinny was good old fashion vanity. He wanted to look good when he was dating the people he met online. (My pointing out back in the 1999 that the scarecrow look wasn't terribly fashionable that year had no effect at all. He got down to 130 before his abdominal surgery.) So on Sunday morning, I'm taking this movie of him, and it dawns on him as I'm rattling off names, "These people are going to see me on this video in a wheelchair." The daughter seeing him that way? Who gives a flying fart. But his brothers and his grandson?? I believe it went straight to his ego. And if that's what it took to get him out of the bed and onto his feet.....works for me.



(4) Now I didn't see this coming but it might have been the biggest motivation: There's a new blue hair in his midst. And she's more like a mauve or a periwinkle based on the camera. She power walks with her walker around the house for an hour (frequently sticking her head in Dad's room!!) I don't know if she's a new resident or just there for a Daughters Day Out as my mother would take when Granny needed to be watched for the day so she could have a day to herself. The rest of the Golden Girls crash on the couch or in their recliners all day watching movies (how many times can one watch "The King and I" before going insane? They had the song "Shall We Dance" on a loop the other day through lunch and after 45 minutes I was begging to have it changed to the football game!) So this little hottie actually has the energy to power walk, has the brain cells to know it's essential (unlike her counterparts or even 99% of my office mates, most of whom have a BMI in the overweight-obese range), and has enough interest in him to pop into his room as she makes her rounds through the halls. This is really life changing. Forget the camera. I know what motivates this dude!

Bringing Dad Cherry Pie

This week I called the manager of the group home and got directions on how to watch the interior of the home on cameras placed throughout the house. It was like watching the weather radar online, only slower. I was, however, hooked instantly. It took at least two hours of watching before the star made an appearance (they cannot be placed in the bedrooms.) He rolled his wheelchair across the living room floor on his own volition and parked it in the dining area. He was sitting up straight and talking to the manager. I could tell immediately that he was over the UTI just by the fact that he was aware of his surroundings. There was no sound. I called my pal in the cubicle behind me to watch with me. His wife is expecting a baby next week and I told him he might want to get cameras, too, so he can watch the baby when he's at work. I have one of those jobs where something like this isn't really a deterrent.

So today I went to visit him and took a cherry pie. I assumed this would put him in a better mood. He was at the table so I broke out the pie and he and I and the sociable male roommate had a piece. I'm now feeding Dad as he cannot get the hang of utensils anymore. The Parkinson's has always created a problem in this area, and now that he's so groggy, he can only eat with his hands. Well, pie is pie. I'd rather feed him. To get him in the mood to eat the pie I set a good example and ate a piece right along with him. He finally said he didn't want anymore after eating about 3/4 of it and told me he didn't want me eating anymore either, taking my plate away. Okey dokey.

As we waited for lunch (the cool part about being this old is, you can eat whatever you want, whenever you want) we went out in the back yard to take a video of him. I weighed the ethics of this. (1) Somebody might think it's funny and put it on YouTube. (2) Not too many people would want to be seen in this condition if they knew what was going on. But I finally decided that given his health and age, we might not get chances to take many more pictures or movies of him. He is how he is, and people don't become less worthy of being remembered as they are in the present just because they become old and sick. If anybody puts this on YouTube I'll just have to deal with it then. This video is the best of three attempts. I want the readers to see that he's doing much better. A picture is worth a thousand words.

One of the caregivers had a call from one tenant's son saying he was coming to take his mother to lunch. Because of her Alzheimer's she couldn't contend with him not being there instantly. She cried for fifteen minutes, "Where's my son?? GET MY SON!! Where is he? What if he doesn't come? HE'S NOT COMING!! Wahhhhhhhh!" We all tried to calm her down while she waited for her son to arrive. I had heard that on prior occassions he said to the caregivers not to tell his mother he was coming because she gets completely worked up until he actually shows up, but this time I don't think they got that message. Finally he came. She calmed down instantly.

So I sat next to Dad and fed him. He still has his eyes shut most of the time and seems to be sleepeating through lunch. He would eat some, but much of it he would chew, spit out, and later pick it up with his fingers to eat it. I think he ate a lot of it. However, he didn't want a second piece of pie, even with my setting a good example and eating another piece next to him.

Going to an Alzheimer's Association Support Meeting

I went to see Dad this morning so that the physical therapist could teach me how to get him in and out of a car, in and out of a wheelchair, etc. He was completely out. According to the manager, he'd been up at night and at the breakfast table he had his forehead on the table. He couldn't be roused from his bed by myself or the physical therapist. We tried for ten minutes to get him to follow instructions but he was out cold. I asked the manager to cut back on his meds, or to get the doctor to reconsider what he was being prescribed. He's been on antibiotics for the UTI since Friday. He'd asked for a pain pill last night. I asked her to switch from Hydrocodone to Extra Strength Tylenol. I told her that he was extremely sensitive to these high powered meds. The physical therapist said she would try again on Thursday, but if he couldn't be roused again, she would discharge him from physical therapy. I told her I completely understood. She said we could always take it up later.

I went to an Alzheimer's meeting in Garland, the only one in the metroplex on this night. It was wonderful to be in a room with children and spouses of people with dementia or Alzheimer's. We did a lot of talking and a LOT of laughing. It was the best thing I'd done for myself in weeks. I heard a lot of stories that were similar to mine. I talked about Dad's listlessness and two of the daughters of patients encouraged me to go through the list of meds he was on and try to cull out the ones that he doesn't have to have. Another advised me to move him into a place that was strictly for memory care. There were about eight of us in this little meeting and we hung onto each other emotionally like people in a life raft. Some of the men had taken care of their wives for years before a broken hip forced them to put them into this facility for memory loss. Finally one of the husbands said to me, "Your number one priority is to take care of yourself. I'm probably a little different in my thinking, but I think you should let the meds stay as they are. This allows you to sleep at night."

A couple of the ladies talked about the disturbing news that the caregiver frequently dies before the person who is ill because of the stress. We all agreed that it was stressful. One gentleman was trying to decide whether to put his wife in this particular facility in Garland. He was presently caring for her at home and it was overwhelming him. I think the thought of having to take that step was eating him up. I said it's still stressful even when they are in a facility, but not nearly as much as if they were living at home. Most of these guys see their wives every day. One lovely lady had her husband living there at the facility. She told us about one of the tenant asking, "How long have you and he been married?" She said 58 years. The tenant then said, "Well, you've had him for 58 years. Why don't you let me have a crack at him." She was dead serious. It was so great to laugh with people who got this.

One of the husbands walked me to my car and said he agreed with the guy who said: let the meds ride. He said, "The goal at the facility is to allow the patient to have the most quality of life they can have. Maybe for your father, being doped up is the way to achieve that for him. He's not suffering. He's resting." I felt that he was saying this with a great deal of compassion, as though this would be the advice he would give his own children. And he was right about Dad being at peace. This morning lying in bed, he was very much so.

Playing Guitar for Dad

Last night I spoke with the physical therapist to get a report on his condition. Last week he was able to walk 20 feet with a lot of help. It started to look like he would be able to assist in getting himself to the bathroom and possibly on and off the pot. Last week he could follow directions to that extent. This week, things have nosedived. He is like a rag doll. He cannot provide any assistance with movement, getting off the wheelchair, getting into bed, etc. It's all the caregivers. She believes he now has the same UTI he's been having off and on because he was refusing meds in rehab and basically never finishing out the regimen. The two times she went to give him physical therapy this week, he was doubled over in the wheelchair and said he couldn't do any standing or walking with her. He said it was because his hip hurt. So they did an X-ray and there is nothing wrong with it. On Thursday he said it was because his knee hurt. I just think his mental deterioration and the meds are working against him.



I decided to take the day off and go visit him today (Friday.) When I walked in, he was asleep at the breakfast table with his chin on the table. I tried to talk to him and keep him awake enough to eat. He was sort of half asleep. Just zonked. He would take his cereal and tip the bowl onto the table. He almost had to be fed. The manager is good at getting him to take a bite of ground up meds in yogurt. He knows enough to give her a hard time about that. So 1/3 of his meds go on his shirt, 1/3 stay in the cup, and the other third go in his mouth. So he's not getting all his meds. Maybe that's a good thing (except for the antibiotics.) Then I asked him if I could take him into the backyard so I could play guitar for him.



We were trying to get his feet up on the foot rests of the wheelchair when he gave a small gasp of pain. So the manager gets him a painkiller. Not a Tylenol. Not an extra strength Tylenol, but a Hydrocodone. Crap. His torso will be in his lap in no time. I took him out in the backyard and played for an hour. He was in and out of consciousness, mumbling, and "singing" along to Swing Low, Sweet Chariot, and other songs. It was painful to watch, but hopefully once the UTI is kicked, he will regain some of his personality.



I will be going back on Tuesday to have his physical therapist work with me to teach me how to get him in and out of a car, onto a wheelchair and out, etc. If I do have to take him somewhere, I'd hate to drop him or be stuck helpless in a parking lot. I don't even know if the wheelchair is capable of going in the trunk. My goal is to NOT have to take him anywhere, but I don't think that's terribly realistic. Things like dentistry do not come to him. But the first plan is to pay a caregiver to take him places with me tagging along. I don't think he'll go with a nonfamiliar face.



My expectations are very low that he will be ambulatory again. We have so much working against us. (1) Two hours of therapy ain't gonna get him back to where he was. Whatever was accomplished in physical therapy has to be repeated all week. (2) The caregivers are not physical therapists themselves and do not have the time or the expertise to walk him around throughout the day. (3) Dad himself, although he would like to walk again, won't push himself when the opportunity arises (when the therapist shows up) and (4) His diseases progress every day and (5) Every day that he sits all day in the wheelchair (he doesn't even use his arms to push it) his lower body atrophies. A lot.



We'll see on Tuesday, but I think he will still be a rag doll. If you would like to call and talk to him, please email me or my sister for his phone number. I can't put it on the blog. The caregivers WILL put him on the phone. Guys, there may not be that many more chances.

It's OK to Ask for Help

I went to see him this morning after I went and picked up adult diapers and aspirin for him. When I found him in his bathroom, he was getting the caregiver to help him with what he needed to get done. This may sound like a small thing but it's not. This is a guy who was extremely hung up about normal human functions. And he was allowing someone to be in the bathroom with him. I turned around and went to the living room to wait for her to bring him out.

One of the goals I have is to maintain my role as the adult daughter. Not the nurse. Not the caregiver. Not the nag. Not the EMS driver. Not the therapist. Not the doctor. To the extent that I can delegate those roles to others, I can avoid resentment and burnout. Dad has a housemate who lives solely in his room (10x10 ft.), and from 8:00 a.m. to 3:00 p.m. and from 5:00 p.m. to 8:00 p.m., his daughter lives in there with him. They come out only for meals. He's not in hospice. She does not work. Dad thinks she's the manager of the facility because she's 50 and white.

Now, in his current mental state, Dad would probably find this an ideal set up. I know of other parents who have made their children promise not to put them in the care of others, and the children have complied, walking away from careers and their own lives. I believe there is another way that's fairer to the adult child and in reality, fairer to the aging parent. Let the parent adjust. If my dad can let a caregiver set him on the toilet and get him back up, anybody can do it.

He's still unable to walk and not fully alert. He can carry on a light conversation, and recognizes who I am. If anyone were to call and identify themselves, he would probably know who you are. He's not physically combative, although he sometimes gets anxious and sometimes hallucinates, reaching for things that are not there. Two male tenants died in the home this week and Dad didn't seem to understand what the caregivers and I were discussing. He was smiling cluelessly.

I met with the manager off site to discuss his case. She is very young and pretty savvy. I like her because she cares a lot and knows each tenant intimately. She said that he did have physical therapy twice this week (finally) and that the first time he was unresponsive. The therapist wasn't sure she could do much for him because he couldn't follow instructions. The second time he was able to walk five steps before becoming exhausted. I asked her if she felt like he was frightened by the therapist, or what she was trying to get him to do. She said no. I told her the longer he went without getting up and moving, the more he would atrophy. She agreed. We talked about how his mind had deteriorated since the hospitalization and that this change could very well be permanent. She thought it might be from being around housemates who have memory loss and diminished cognitive skills. I told her his history with the prior fall in the spring and how we'd already seen this before. I told her whatever the socialization was he was getting now, it was better than anything he was getting before. He goes into every one's rooms to hang out, including the gentleman who lives with his daughter in his bedroom.

We talked about her experience in group homes. She said that sometimes families want very much (and expect) their family members to recover to the point that they were ten years ago. And it's not possible. They blame the caregivers, the meds, the therapists, and the doctors. But there is nobody to blame, it's just a normal part of the aging process for those with dementia or Alzheimer's. They had one tenant last week who had heretofore been nonverbal (other than sharp barks) regain her mental faculties for a day. Everyone in the family called her to carry on a conversation, the first in months and possibly years. The next day she was lost again, and the blame game started back up.

I would love to see Dad regain his senses and regain the ability to walk again. But if he doesn't, no one has failed here. It's just the progression of Parkinson's coupled with dementia. I'm thrilled that he accepted help. This will help us both.

Fun with Dad

He's doing better. Much much better. At first I thought he was over-medicated (he was coming out of a nap in his wheelchair, and thought the designs on the marble floor or the shadows was poop on the floor from one of the ladies making a mess. Wanted to know what the thing was in his lap (a pillow) and the other thing (a towel.) I asked him if he'd like to go for a walk (me pushing the wheelchair) and he said, "Let's go for a walk." So I took him outside and he immediately got around to his favorite topic: money. He needed to move his money out of the bank, but he couldn't remember which bank. He wanted me to help him remember what the name of his bank was in downtown Houston. That's all he knew. I said, Washington Mutual, "That's a good guess, but that's not it." Citibank? "No, That's a really good guess. But that's not it." Bank of America? "No, but you're getting closer." Republic? "No, but that's a good guess. I'd use Grandson's bank but it's offshore and I couldn't get to it very well." I don't think I know. "It's Blank Blank National in Galveston. I need you to take me to Galveston right now so I can move my money into the other bank. I'll split it three ways, one for me, one for Clear Lake (huh?), and one for XYZ (I didn't catch the last one. Nothing I'd remember). Grandson has nothing to worry about, he'll get his. But I don't want to leave anything to the little girls." Because they put him in a "nursing home?" And who the heck is this pushing his wheelchair and throwing out incorrect names of banks? I told him Galveston would be a six hour drive, and I had no reason to go to Galveston. He tried to bribe me. I told him money was not a good reason. Fortunately the weather was fabulous.

We got back to the house and he wanted to take a nap. According to the caregivers, he's still up a lot at night. As we tucked him in, I made him promise to be nice to the ladies at his home, even when I wasn't there. I made him promise to press the button if he wanted to get out of bed. He didn't promise anything. He just laughed at me and the caregiver for going on about it said he was always nice to everybody.

This was the best visit in a while. Any day where nobody falls or gets hit qualifies as a successful day.

David Falls for a Fourth Time

Got a call at 8:30 tomight. Unbelievable. The caregiver was putting him in bed when she had to leave the room for a second to turn off some other tenant's fan. He got out of the wheelchair and fell. They are calling 9-1-1 to have him taken to the emergency room to get x-rayed to see if he rebroke the hip. This is becoming so "normal", I just went back to the Emmy's.

The alarm on his bed is attached to his shirt. Last night he was in bed, took off his shirt (to bypass the alarm), climbed down to where the rails part from the foot of the bed and went into the bathroom.

Just got another call. He refused to go with the paramedics. Was slurring his words. Told the paramedics I was not the power of attorney and didn't make decisions for him. So what's this thing he signed?? I spoke to him on the phone and he said it was a light fall and he didn't think he hurt himself. Again, no connection between breaks and rebreaks and the declining possibility of an ambulatory future.

Anybody out there looking for a low maintenance elderly father figure to dote on in his declining years? Don't forget to check out hobbyperweek.blogspot.com. Good stuff this week.

Go Girls

So Dave went home and appeared content at the group home. I went home and the next day at work I get a call saying he had "punched out a caregiver" and was refusing meds. WHAT??!? I don't know how badly he punched her, but I called a little later and asked if she had to go to the doctor or anything and she said she was OK. I believe he did hit this 24 year old 120 pound woman. I was pretty distraught. There is medication that you can apply to calm people down so they are more compliant.



My sister and I went to visit him on Saturday. Do we confront him? Will this make things worse? Will he take out his resentments on the caregivers? We pulled aside the caregivers and asked about it, "I heard he hit someone Thursday night." The answer was, "Yeah, and he got So and So last night." OMG, it just keeps getting worse. I asked them if his hitting was going to get him kicked out, and she said no, that they had seen much worse in the nursing home. She also had the insight that he was going from independency to total dependency for things like dressing, toileting, and sometimes eating (cutting up food), and he was striking out because of this loss of control. They'd seen it all before. I hold the women in very high regard. They are understanding and handling a job that I couldn't do, regardless of the pay. They do it with a positive attitude and with unwaivering patience for the people that are dependent on them. We could all learn from them.



He talked about the play he was in this week as we wheeled him down the street in his wheelchair. As a person who has looked down upon people with disablilities, for example "In order to get in here, you have to have somethng wrong with you" upon living in Tarrytown, he sees being in a wheelchair as a loss of worth and something he is being forced to endure. He can't understand why we don't just hand him the walker.



Upon sitting in the living room with Dad and the roomies, one of the roomies chided him about not using his walker (before the fall) and how he brought the broken hip on himself. "I told him! He's had three falls." Although I feel that her words are probably very painful and embarrassing for him, I think it's probably the only way he can hear the truth. He sure isn't going to hear it from my sister or myself, and if he's ever going to walk again, he's going to need friends like her to tell it like it is. Keep it up, gals!

Is He Always Like This?

This was the most frequent question I heard at the rehab. Dave's mental state deteriorated the longer he stayed, and the results were mixed. As of 8-25-2010 he was able to walk 100 feet with two people supporting him on each side. This was the good news. The bad news was that he was in a delusional state most of the time, never understanding that he was in a rehab facility. He became combative, refusing medication and refusing to cooperate with his nurses. Most of Wednesday he thought he was in a courtroom at a trial and everyone there (other patients) were members of the jury. The day before he was preparing for a speech he was supposed to give to a bunch of bad kids who liked being bad. It would be on his ex-girlfriend who was the granddaughter of a Mafia kingpin who put him up in a lean-to under the causeway in Galveston.

On Wednesday he tried to escape twice by getting into the wheelchair in his room and attempting to wheel himself out of the building. He also refused to stay in his bed and presented a major fall hazard by attempting to stand over and over. As soon as a nurse would leave the room, he'd try to get out of the bed again, setting off alarms. On Tuesday they asked me to get him a sitter at night, and by Wednesday they asked that I get one for the afternoons as well. I became the Wednesday afternoon sitter, but I told them he needed to go back to his assisted living facility since he didn't feel safe at the rehab. Of course, when I would sit with him, he would also make an effort to stand up (basically trying to swing up from a sitting position), but we surrounded his bed with the reclining chair I was sitting in and the hospital food table on the other side of the bed. I just kept saying, "Dad! You're making me miss my show!" and then he would lay back down. A cardinal rule everyone understands: Never get between someone and "their show." As the evening went on, every show was my show.

The saddest part about all this is that (1) he was making progress, but (2) he still can't stand or walk on his own and (3) he will get far less therapy with the home health care service with no equipment and much less space to move around. As delusional as he is, he never made the connection between staying in the rehab and working with them and an ambulatory future. As terrified as he was of the rehab situation, I felt that going back home was the least crappy choice.

I think his ability to walk again is poor due to the his extreme muscle atrophy, Parkinson's, confusion, continuing refusal to eat sufficiently to build muscle, and a broken hip. It may be that he will continue to have falls since the rails do not go all the way to the end of his hospital bed mattress and he can climb off. He will set off alarms if he does so, but he can always have a fall before anybody gets to the room. As they said at the rehab, "He's fast. I'll give him that."

So he went home and was in his new wheelchair. He spent the rest of the afternoon trying to get out of his wheelchair. They called to ask if they could belt him into the wheelchair and I said yes. I asked them if they possibly restrain him in the bed, but legally they cannot. I understand this law because I'm sure the practice has been abused in nursing homes for years, but NOT restraining him at night is going to lead to another fall, and another break, and I consider that much more cruel. About the best they can do is, if he won't calm down, put him in his wheelchair at night and take him from room to room with them as they do their other duties.

When the assisted living caregivers told him he couldn't walk on his own yet, he said, "I've been walking around all day!!" I don't think he's lying. I just think the dementia has put him in a very dangerous position. I don't hear the assisted living manager hesitating to take him back, but after a few days I think they may decide he's beyond what they are set up for and if that happens he will probably need to go to a nursing home. All any facility has to do to get rid of someone is to require a sitter. At $16.00 per hour, that's $160 per night. Not paid by Medicare.


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Went to Dad's house to drop off sheets. He's much more at peace. Working on a wedding he's planning(?) Not happy because someone stole the guest list from his pocket, but happy to be home and telling the other tenants how much he missed them. Wheeling around in his wheelchair fairly well. Within a couple of days he'll be much more skilled.

David Goes to Rehab

On Friday I got a call from Presby that he had tied his hospital gown around his neck. Also that he kept trying to get out of bed, and could a family member come watch him. So I stayed with him and tried to work from his room on the computer. I couldn't however get online, so I just worked email from my Blackberry. Ever try to sit in on a one hour conference call with no mute button on the phone and someone yelling, "I want a piece of cherry pie right NOW!" Trying to climb out of bed all day, gown off most of the day, demanding clothes, food, to go home, you name it. The hospital finally came to my rescue when the nurse flew in and said, "Good news! The doctor has released you to go to Remington!" Thank God my babysitting day is OVER! The scary part: The nurse told me he hadn't given Dad any pain killer for days. This is the new Dave. No wonder we hadn't had any bad trips. He was not on pain killers. He asked every single nurse and tech, "Was that your mother who had the lead last night in that performance? She was terrific!"

In the early afternoon at Presby he walked with the physical therapist about 15 feet and was exhausted and had to return to his bed. This was good progress (if I ever get in an accident I want this lady. She was fantastic.) But after sleeping in the bed for thirty minutes he forgot he couldn't walk and began trying to sneak out of bed again. I thought maybe it was for the attention it affords him (people having to come in and lay him back down, or me standing at the bed on my Blackberry), but I also think he believes he can walk without help. He can't be convinced otherwise. This is a major problem. He will continue to hurt himself and will be wheelchair bound shortly.

When he went to rehab (another palace) at Remington, they assumed I would stay the night. I answered a few questions and left. I suggested they use restraints. They said "We don't do that here." I said, "Make sure he has a bed alarm." What I didn't add was, "...because he will require a person running in and out of the room all night to keep him in bed." The next evening I brought him clothes. I walk into his room, and there he was by himself, trying to get out of bed. The tech came in and asked if I am staying. I said, "No, I'm just dropping off clothes." She said "Let me know when you are leaving" and left the room. He immediately starts to climb out of bed and I said, "I'm leaving." He yells, "I'm just going to put on some pants so we can leave!!" I find the nurse and they put him in a wheelchair so he could be with them when they went about their other duties. I thought that was a very good solution. Nobody could work without Dave being supervised.

He walked twice in rehab today. I don't know how far or how long. The tech told me after rehab (when I assume he was totally exhausted) he came back to his room, and "Not ten minutes later he was climbing out of bed." Houston, we have a problem.

The rehab told me on the first day the bed goes all the way down to the floor. So my answer is to put it on the floor and let him crawl around. I guess they don't want him going down the hall like that, but hey, it IS exercise for the hip. It's all carpeted.

I think what I hate most about dementia is that no reasoning sinks in. To him he is perfectly capable of walking. He can't remember that it was a major struggle to go ten feet thirty minutes ago. It would be nice if, when he's in the mood to walk, someone were there to help him do so (it requires a trained physical therapist.) But I guess it's all scheduled. But if he can do five short walks per day with a 20 minute nap in between, that would be faster progress.

I'm trying hard to maintain my real life. As my piano teacher says, if you start canceling, canceling, canceling, the caregiver life takes over. I kept all my appointments yesterday, which included a guitar jam with Julie, a play with Pat, piano with Eric, three hours of catch up work at the office, and dinner with Leonidas. Whew. Today we move his old bed out of assisted living and I get a massage.

David Broke His Hip

David fell Tuesday morning at 1:00 a.m. and broke his hip. He was getting out of bed. He was taken to Presybeterian Hospital for X-rays, at which time they realized he had actually broken it. They did surgery at about 3:30. The surgery went very well. The doctors said he was going to stay there about a week and then go into rehab. They said they would get him up and walking the next day. As of this morning that had not happened, however. Some of this is probably because of his poor balance. They did put him on the side of the bed to sit up. He is comfortable and does not appear to be in pain at all. In the past he did not react well to opiates. This time he's doing OK with it. He is in la la land, but it's a happy place for him this time. He can recognize people on TV and joke with the nurses. This was a clean break and they put pins in. No hip replacement.

The goal now is to do a few things to prevent future falls at his assisted living house. We're are going to get him a hospital bed with rails and an alarm so that when he sits up to start standing at night, someone will come in his bedroom and assist him.

Hopefully this will be a pretty easy recovery, but as we know, the longer he lays in bed without walking, the longer it will take to become mobile. They told him he could put as much weight on it as he wanted.

Here's his contact info:

Texas Health Presbyterian Hospital Dallas
8200 Walnut Hill Lane
Dallas, TX 75231
214-345-6789 Room 446.

He can't reach the phone. You will need to ask for the nurse's station and get them to help him with the phone. He brings up the family all the time.

The Shopaholic

Before Dad's big fall I gather that his favorite past time was walking across the street to the drug store and buying over the counter drugs and personal necessities. When we moved him the first time to assisted living in Houston, we found at least four bottles of aspirin, and lots of packages of cold medicine, along with partially used gauze bandages and tons of drugstore junk. In assisted living, however, to keep up the shopping, he had to have someone drive him to the store and give him money. So we have a couple of built in problems with that: Going to the drugstore a couple of times a week for things you already have (and I've checked) is not a good use of anybody's time, he's currently living beyond what he's got coming in from pensions and SS just to be in assisted living, and he's having more falls. We've had three falls in the last three months, the last one a week ago and fortunately nothing was broken.

Today I had him over to our house to listen to me practice piano and guitar. Not super stimulating, but it gets him out of the house. He promptly fell asleep. Then he brought up needing to go to the drugstore. He gets very angry when I do not give him money and take him to the drugstore to let him buy things he "needs". When I tell him to make me a list and I will buy him what he needs if he doesn't already have it, he said he has a cold and needs cold medicine. He has no cold symptoms. I told him he didn't have a cold (his symptom was his blood pressure was 20 points up, per him.) I let him my blood pressure fluctuates sometimes 50 points per day and that's not unusual. It doesn't mean you have a cold. He said he doesn't know what he needed, but he'd know when he saw it. I told him he's been falling a lot lately and if we went to the store and he fell, I'd have to call an ambulance, so the answer was no. He was very mad and said no one's had to call an ambulance for the last three falls. I said, that's because people were willing to risking putting their back out to lift him. I wasn't willing to do that. He asked "Does this mean you'll never take me to the store again?" and I answered "yes". Then he wanted me to take him home. I took him back and told him I'd see him next week.

Part of our problem is his inability to use the walker very well. This is partially the dementia, but also unfamiliarity. He tried to leave it at his house when we were getting ready to leave. The caregivers have to nag him to use it when he stands up. When he gets out of a car, he won't use the walker as a tool, but hangs on the door jam and tries to kind of sit in the walker. He can't seem to manage getting the front wheels up over a low step or even a welcome mat.

I have a bit of a balancing act: (1) Don't let myself get worn out doing things just to "keep him happy" and (2) being reasonable. I see the spending compulsion as a bad habit. Once upon a time he might have been able to afford to blow $100 a week on non-necessities and things he already had four boxes of, but those days are well behind us. My best solution is to get a list from a caregiver, ask another caregiver to search his bin to see if he has the stuff on the list, and then ask her to show him his stuff. We made a trip to his house in the middle of the week (through rush hour) to fix his glasses and give him a used watch. It's not his fault he has no concept of what people go through to keep the Dave machine up and running. He doesn't even know he's in Dallas.

I didn't expect him to be a happy camper, and I was right. However, I think he is still happier than he was before with the new roomies and caregivers, whether he thinks so or not. He thinks the last place was better.

This is a man who never bought a shirt until my mother had been gone five years. I could have guessed a few possible habits he might have taken up, but shopaholism was not one of them. I want to treat him like my boyfriend said he would treat me when we first started going together, "I'm not going to spend a lot of money on you, but I will spend a lot of time with you." Dad doesn't really get "quality time", but I think "acting as if" he does will eventually help the relationship. For example, I look forward to taking him to parks when it cools off. The good thing about dementia, in a couple of days, the argument is forgotten.

I just keep in mind what the marketing manager said when we moved him in, "The only reason people leave here is because they run out of money and have to move to a state facility." If he lives ten or fifteen years, that's possible. I doubt that will happen, but it won't happen with the Tick in charge. (Tight as a tick. Get it? That's me.)

Mel

David Has Cool Roommates

David had a fall this morning trying to stand up from a chair. He and the chair both went down. However, he is fine and doesn't appear to have any pain at all.

I got back from Portland today and went to visit him at his assisted living facility today for a couple of hours. Rather than stressing us both out with a trip away from his new home, I thought it would be better to hang out there. So I brought watercolors to play with, and he was about to enter another card game when I got there. It works very well; the caregivers help those who can't remember to play or don't have the cognitive skills to play, or don't know the rules. Dad fell into the latter category. It was Crazy Eights. They played while I put on a painting demonstration.

While I was there, I observed some things that were uplifting. Dad was laughing and making jokes with his new housemates. He didn't get impatient at all with the ones who couldn't remember to play or kept saying the same thing or asking the same question over and over. In other words, he fit right in and was truly happy about it. About the sixth time Edith said "I WON!" Dad rolled his eyes like, "Can you believe this." When everyone caught him at it, they all had a good laugh, including Edith and Dad.

Another milestone (and this is a biggy): He said, "Isn't Bill having a birthday tomorrow?" Bill is one of the residents. I don't know what's bigger, Dad's remembering Bill's name, or remembering that he had a birthday tomorrow. The question came up by the group: what was I going to do with the painting? I said, "Well, I thought I'd give it to Bill, the birthday boy." Then Dad told me he was blind. I said, that's OK, and everyone agreed it would still be a good idea. I gave it to Bill when he was sitting at dinner. The caregiver described the painting which was a mountain/river landscape from an Oregon travel brochure. Charlotte is another resident. She used to be a very active artist "in her youth". Oils, watercolors, everything.

One of the other residents was a movie actress, and she and I had both played in Fiddler on the Roof, she a midsize role in the movie and I one of the daughters in the play. It was such an honor to meet her, and I told her that my sister and I had both played Spritza and Byelke, and Dad popped off, "And my wife played Grandma Tzietel!" We made her so happy that we actually knew the name of her character and were familiar with her part and a bunch of the other characters.

I don't know that every visit will be this great. But this one was definitely incredible. They are going to watch the movie Fiddler on the Roof tonight to see her play her role. I told Dad I'd come see him some time next week.