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!