The Zen of Caregiving

The Trauma of Sudden Change

For those suffering from Alzheimer’s or any kind of dementia, routine and regularity are important for stability.  I learned this the hard way with my mother-in-law and my father.  Rae had fairly advanced Alzheimer’s disease when her son, Adrian, and I got married.  We thought it would be wonderful to all live together in a big house—Rae, her caregiver, Adrian, me, and our children from previous marriages. 

As you can imagine, that turned out to be a fairly chaotic household and a real shock for Rae, who had been living quietly in her home with just her caregiver and the caregiver’s teenage daughter.  Our efforts lasted a few months, until we realized it was never going to work for Rae.  She was more agitated, confused, and aggressive than she’d ever been before.  Fortunately, her previous home was still available, and we moved her back.

Years later, we moved my 93-year-old father from his home in Florida up to an assisted living facility near us in Ithaca, New York. His dementia was not as advanced as Rae’s, and he seemed “normal” in most ways, but he did have severe short-term memory loss. 

We noticed the first signs of change in Dad on the airplane, as we left the south. He began talking more about Newark, New Jersey, where he had lived most of his life. By the time we got him from the airport to our house, ate dinner and played a little cards, Dad started to freak out. He said he wanted to go “home,” but home was his parents’ house in Newark. He thought his son was his brother, and asked to use the phone to call his mother because she would be worried about him.

Dad wasn’t the only one who freaked out. My brother and I were horrified that we had brought about this change in Dad by taking him away from his home of 27 years in Florida. We spent a terrible night trying to get him to settle down and sleep a little.

Fortunately, the next morning Dad was OK and knew who we all were again. Then we had to get him settled in at his new home, the nearby assisted living facility. He had a bad couple of nights there as well, but in a few days he was adjusted and enjoying his life again. 

Sometimes you have no choice but to move a loved one with Alzheimer’s or dementia, but if at all possible, routine and stability provide the best environment for them. I made sure to see my father three or four times a week, and talked to him more often on the phone. He knew who I was throughout this time of his life, because I was there on a regular basis. And the facility he was in was small enough so that he felt comfortable. He could walk to the dining room and rec room, walk the grounds, and feel safe. 

Are Humor and Word-Play Lost Skillls for Those with Alzheimer's?

Does the ability to crack jokes disappear when you have Alzheimer’s disease?  Recently a psychiatrist friend said that a sophisticated sense of humor was a clear sign that Alzheimer’s was not present.  No matter how forgetful you are, he said, if you can crack clever jokes like that, you don’t have Alzheimer’s. 

I wondered about this because the one thing my father seemed to keep to his grave was his sense of humor.  He had advanced dementia to the point where he couldn’t remember a conversation past a couple of sentences, had no idea where he lived or what year it was—in short, he would not pass the typical test for Alzheimer’s.  Yet he still made jokes.

When I said to him one day as we were walking down the hall of his assisted living facility, “How are they treating you, Dad?”  He answered, “Like an old man.”  When an administrator told us they were having Irish music, Irish drinks and Irish food for a St. Patty’s Day celebration, he said, “How about some Irish girls?” 

One day as I drove him back to his place after dinner at our house, Dad said, “The trouble with being old is that you just get worse, you don’t get well.”

            “You’re right, Dad.”

            “And in my case, I can’t get any worse.”

            “Right,” I said again absentmindedly. 

            “You don’t have to always agree with me, you know,” he quipped.  “Stop and think about it for a few minutes before you answer.”

Can one still be clever with words after losing so many of them because of Alzheimer’s or other forms of dementia? It seems that one can. In her book, The House on Beartown Road, Elizabeth Cohen says that while her father’s speech was now pared down and skeletal, it was eloquent:

There is undeniable beauty in the way he is losing language, the way he substitutes different words when he cannot find the ones he wants. He calls toast “the singed bread,” and apples “the crackly, magnificent, sweet ones.” Sometimes he calls me and Ava “the beautiful big one” and “the beautiful little one. (p. 55)

Because of my experience, Elizabeth Cohen’s experience, and evidence from other sources, I wonder what made my psychiatrist friend so sure that clever humor could not be made by someone with Alzheimer’s? I didn’t argue with him, however. He was speaking to me and my husband at the time, and I think maybe he was simply trying to reassure Adrian that his mind was fine.

I think his mind is fine, too.  Most of the time.  Just like mine. 

Radio Interview on "Coping with Caregiving"

This coming Saturday, May 20 at 3 p.m. Pacific Standard Time (6 p.m. EST), you can listen to a live interview with me on Jacqueline Marcell's internet radio program "Coping with Caregiving" heard free worldwide on http://www.wsradio.com/copingwithcaregiving/.  Topics discussed wil include survival strategies for caregivers, the joys and benefits and being a primary caregiver, communication strategies, and dealing with institutions such as nursing homes and assisted living facilities.  I will also talk about the memoir form as an ideal way to tell one's life story and to read about another's. 

If you miss the live broadcast the interview will be archived by Monday afternoon, May 22, for listening-on-demand in the Archives.  Listen via Windows Media Player, a free download available at the top of the website.  Interviewer Jacqueline Marcell is the author of Elder Rage.

Control Freak

I’m not sure if it’s a trait of all caregivers or just me, but I was some kind of control freak when I was responsible for my father’s care.  I kept a sharp eye out for his special needs—like making sure there were facial tissues and toilet paper in the bathroom.  With his severe short-term memory loss, he certainly wouldn’t remember to restock those items!

So perhaps the controlling started with the best of intentions to make things better for Dad, but I think they escalated to the point where I expected everyone else in the family to take care of him exactly the way I would.  When my husband and I went away for a month, leaving two of my brothers in charge, I sent them a three-page letter of detailed instructions they were to follow. 

What Dad really loved about visits from his sons was to play with them—to go to a bar and have a beer, to play shuffleboard, pool or cards.  That’s what meant something to him, not the fact that they made sure his laundry was done.  Dad loved to play cards with me, too, and sometimes I’m afraid I was so obsessed with the housekeeping that I neglected his simple need for my companionship. 

The best times with Dad were when we did fun things together, like a walk in Treman Park, along one of Ithaca’s famous gorges, or went out to lunch at Friendlies with his granddaughter and great-grandchildren.  These were moments that enriched both our lives in a special way.

That’s not to say that housekeeping, grooming, and doctor’s visits aren’t important.  Of course I helped the quality of Dad’s life by paying attention to these details.  But it’s also important to relax and let go at times, in order to just be with our loved one, and to let them be. 

How to Improve the Quality of Institutional Care

How can you ensure that your loved ones (let’s call them parents for the sake of this article) are getting the best possible care at a nursing home or assisted living facility? The first step is to pick the best institution you can afford, if you have a choice in the matter, but after that you can’t simply sit back and relax. It’s a fact that most nursing homes and assisted living facilities are understaffed, and even when they aren’t, you need to be sure the staff are doing everything they are supposed to do.

There are several things you can do to improve the service your parents receive:

Get involved with the institution on a regular basis. Going in person is best, but if you can’t manage that, keep up with frequent phone calls. Learn who is in charge of which services and who to call if there is a problem. Make sure you understand exactly what services will be provided, and talk to your parents regularly to find out if their needs are being met.

Naturally, the better your parents are functioning, the less you need to do, but no matter how capable they are, it’s still a good idea to help monitor the quality of their care. My father had severe short-term memory loss when he lived at an assisted living facility, so it was very important for me to be actively involved.

Get to know the staff on a first-name basis. The aides in assisted living and nursing homes work very hard for little pay, yet their attitudes can determine how satisfied your parents will be with their care. It was fortunate for me that my father always got along well with staff. In spite of everything, he kept his sense of humor, and went out of his way to be friendly.

Sometimes a resident is unhappy and difficult, which makes the staff’s job harder. One woman I knew always complained about everything and was sarcastic to the aides who were trying to help her. They still tried, but the job of caregiving was made more difficult because of the way they were treated.

No matter what job they are doing, people like to be appreciated. When you take an interest in the staff, you acknowledge that the quality of your parents’ lives is important to you, and that you recognize the contributions staff are making in this regard. Very often a small token of appreciation, like a box of candy at holidays, will go a long way in gaining staff support.

Finally, follow up to make sure promises are kept. I had a very difficult time getting my father’s laundry taken care of at his assisted living facility. Most residents put their laundry hampers outside their door on laundry day, and put the clean laundry away themselves when it was delivered. But my father was not able to keep track of his laundry at all. He didn’t know when it needed to be done, whether the clothes in his hamper were clean or dirty, or how to put the clean clothes away in his closet and dresser.

After talking to the director of the facility, she said she would ask the aides to pick up Dad’s laundry when he wasn’t in his room, and then put it away when they delivered it, again when he wasn’t in his room. But I had to follow up several times before this procedure was actually done on a regular basis.

By following up on requests, showing appreciation for staff, and getting involved in the day-to-day care of your parents, you can make a significant difference in the quality of their lives.

Podcast Interview

A couple weeks ago I was interviewed by podcaster Paul Toth about my book, The Bipolar Dementia Art Chronicles.  We talked, among other things, about surviving as a primary caregiver and the connections between being bipolar and being creative. At the end of the interview I read the section from my book where we bring my father by plane from his home in Florida up to Ithaca, New York, to move him into an assisted living facility near me. 

To listen to the interview, go to Tothnews.libsyn.com and right click on the direct download for Tothworld #35.  Paul has a short introduction before he begins the interview.