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.