Things one caregiver learned along the way

Ann Harrison lives in Boston.  Her father died in March from pneumonia.  Her father participated in dementia research studies at Mass General, and his brain was donated there upon his death.  (It’s the only way she will learn which progressive dementia he had.)  This week, Ann posted to an LBD-related online support group a list of things she learned along the way that helped her father.  She gave me permission to share her list, and two subsequent email exchanges about one item on the list (the 24-hour clock) and one item not on the list (brain donation).

– Robin

Posted by:  Ann Harrison
Date:  3/31/11

Here are some things, large and small that I learned [that helped my father.]

Find a neurologist you trust. The disease changes over time and the medications to make the patient most comfortable also change. We saw a “geriatric specialist” first, who put Dad on five or six different medications all at once. Some were good, some were not, but adding them all at once was bad. Then we saw a highly regarded geriatric neurologist who did all the right tests and was slow about adding medications, but who constantly broke appointments and was hard to reach. Then I took [a local support group leader’s] recommendation and saw Dr. Gomperts at MGH. He never decided which of the untreatable progressive dementias Dad had, but was always available within a few hours and worked with me to balance medications as Dad’s parkinsonianism and fears got worse.

Second, watch all medications. Dad’s serious problems started after he was put on vesicare by his urologist. Who would guess that medications for urinary frequency could have terrible effects on cognition? If I had known about this [online support group], Dad might have had another year or eighteen months of slowly declining normality, instead of a rapid decline into dependency. Later, he had a bad reaction to Benedryl – something you can give to babies.

At first, Dad’s worst problems were confusing times of day. Even before he was in serious trouble, he would show up for PT in the middle of the night. We started with caregivers from breakfast until afternoon nap, then from dinner time to bed time, leaving him alone while he normally slept. If he awoke, he had no way to orient himself in time. I built him a 24 hour, single-handed clock that showed when he should go back to sleep and when he should expect someone to be there. Here are the instructions:

[Robin’s note:  In an email exchange with Ann, I noted that probably once a month I recommend the 24-hour clock from the pragmatic caregiver to people in the local support group.  I think it’s a great idea but I’ve never heard from anyone other than the “pragmatic caregiver” that it worked.  I asked Ann if the clock addressed her father’s confusion.] [The 24-hour clock] helped some.  We also put a big cardboard box in hall with a sign saying “It’s night time, go back to bed!”  Sometimes he would call me at 1 or 2 AM and I’d tell him to look at the clock to and see that no-one was supposed to be there.  So, yes, I think it helped, for a while.  Then he needed 24 hour care …

Dad’s temporal disorientation lead to his calling me at all times of the day and night, which got to be a problem as he forgot phone numbers and called other people by mistake. I got him a memory phone without number buttons. He was able to read long after he was able to talk coherently, so I just put names on the buttons rather than pictures.

Learning to adapt to his condition was really hard – from the moment when a shoe-store clerk suggested shoes with velcro closing that I thought he would hate, but the person he’d become found them fascinating and wonderful, to the moment when I realized that he really didn’t need his partial plate – nobody cared if he had front teeth or not … a whole series of letting-go incidents. But so many voices on the [online support group] kept saying that we the caregivers need to move into the world our loved ones now inhabit because they can’t come back to ours … and I learned to live with it. There were bad times when other people had to remind me that he couldn’t come into my world, even if it was Christmas and I just wanted him to go downstairs for dinner.

The voices on this [online support group] also helped me understand that the hospice doctor’s recommendation for a stair lift was good, even though I thought climbing stairs kept him strong and he had never fallen there. Safety is more important than strength when you’ve got a disease that’s going to be fatal.

The [online support group] also helped with legal issues. Before his serious decline, Dad had given me power of attorney, added my name to his bank accounts, and made me his health care proxy. It was on this [online support group] that I learned about what Massachusetts calls the “Comfort Care / Do Not Resuscitate” form. I signed them during hospitalizations in the first few years, but those forms were only binding during the hospital stay. The official form had to be signed by his regular physician. I also got a letter from that doctor saying that he was incompetent due to dementia, which I needed once or twice to get a bank to accept my power of attorney.

After he got so unstable on his feet that he shouldn’t try to walk alone, I found a motion sensor alarm for his bed. His caregivers added a baby monitor, so they could go downstairs to make meals without worrying that he would try to get up and fall.

And then there was Capgras. His problem was more about being in a house that looked like his house than thinking that people were not themselves. By the time that symptom arose, he had great difficulty getting out of the house, so driving him around the block wasn’t a good solution. Generally, talking about the pictures of his parents, my mother, and his boat would convince him that if he wasn’t at home, he was still in a good place.

And all the bathroom stuff – the toilet seat booster, the booster with arms, depends, commode… constantly letting go of who he was, and adapting to who he was becoming. One non-toilet related bathroom accessory was a long shower bench that he could sit on outside the tub, then slide across into the tub and swing his legs in. Even with grab bars all around, the step into the tub was frightening – to him and to his caregivers. The long bench solved that problem without having to redo the bathroom.

Some messages I took selectively, deciding that the quality of Dad’s life mattered more than keeping him completely safe. So he ate whatever he wanted because texture is a lot of the pleasure of food and food was something he enjoyed to the last day of his life. No thickened liquids, no pureed diet. Maybe his pneumonia was caused by aspiration, maybe he would have lived long enough to be completely bedridden, sucking on a bottle if I hadn’t been stubborn about food, but I can live with my decision there.

And hospice and staying at home to the end. He didn’t go to a doctor’s office for the last eighteen months of his life. Regular visits from the hospice nurse kept minor problems from flaring up, and knowing that we had a doctor who would come to the house if something went wrong was a huge relief – to him and to all of us.


Robin’s note:  I asked Ann why she hadn’t added “brain donation” to her list, as this was something she had learned about along the way.  She replied that her father was not part of the decision to donate his brain and therefore it was not something that benefited him directly.  She said that there are lots of benefits to her, but were none to her father.  I know that when individuals donating their brains are involved in that decision, they feel that something good is coming out of something bad.  And they are often proud for making such a decision.  This doesn’t work for every family (as many wait until the family member is on his/her death bed before making the decision) but, when it does, it can be a point of pride for the entire family.