A Patient’s View of Alzheimer’s

A Patient’s View of Alzheimer’s February 5, 2019

We read about Alzheimer’s disease—that the numbers are increasing, that it comprises 70% of all types of dementia, and that, so far, there is no real determinative cause or treatment.  Some of us may know a person with AD. Some of us may even be caregivers for one.  But how much do we really know about what is going on in the mind of that individual who day by day is losing both memory and sense of self?

Even as a psychologist, I was not prepared for the changes I saw in both my parents. The university classes I taught stressed the many positive aspects of aging, based on theories of development, so I’m embarrassed to admit that when my mother, in her late 70’s, had trouble following conversations, I encouraged her to pay more focused attention! I was in denial and wouldn’t recognize even the possibility of Alzheimer’s disease in either of the parents I loved. The distance from conflict to compassion still lay ahead of me.

In this article, you’ll read my mother’s own descriptions of the changes that were happening to her and follow along on my journey with her, but first let me give you a brief background.

While my parents were still living in southern CA, my husband and I had moved to the Bay Area, so family visits became less frequent. When my father also developed signs of dementia, my parents moved to Henderson, NV to be near my brother, a medical doctor who had their powers of attorney. After breaking his hip in a fall, my father, Michael, spent his last few months in a rehab hospital before he passed away in 2005 at the age of 87.

By then, my mother, Madeline, was already showing signs of mild cognitive impairment, MCI, a stage between normal aging changes and mild dementia. At her age, eighty-five at that time, her short-term memory was noticeably affected, but she was still able to independently perform the basic activities of daily living. I was determined to keep my mother from ever joining the group whose MCI advanced to Alzheimer’s disease.

I began to study as much as I could about AD in order to learn the best diet, the best supplements, and the best activities that would help save my mother. I was ready to fight back. And if I couldn’t completely protect her from eventual AD, I at least wanted her to be active and healthy, enjoying her present life, for as long as possible.

My task was complicated, however, by two rather serious obstacles. First was the physical distance between us. Second, I had no legal control over either where she’d live or her care. Other than the trips I’d take to visit her, or the times I’d arrange for her to stay with me, I had to rely on phone calls in order to maintain regular contact. I began a habit of calling her a few nights each week before she went to bed, mainly to keep her mind stimulated with conversation and her spirits up. But as time went on and she was moved from living with my brother in his home to being placed into three different care facilities, her side of the conversation became more emotional, full of fears and her hopes of escape.

Clearly, Mom’s memory losses were becoming worse, much more significant than forgetting words or names. Certain factors were greatly increasing her risk for AD as opposed to a more mild cognitive impairment.  What were these risk factors?

  • LOSS Disorientation from multiple residential changes—five moves in a little over five years, which also caused
  • LONELINESS due to separation from her family,
  • LACKING social interaction and emotional support, and being
  • LOCKED IN a memory care unit, resulting in depression and anxiety

Not only had she lost her own home and personal belongings (except for necessary clothing), she was extremely lonely, living apart from her family who had always been her primary social contacts. And in a memory care environment she was lacking mental as well as social stimulation on any regular basis.

I started to record what she said on my evening phone calls to her because her statements were profoundly sad, coming from the depths of her feelings as she struggled to understand her new environments. Her words and her predicament touched me deeply, and I was totally frustrated at being powerless to intervene.  Those evening talks, sending each other hugs and kisses over the phone, were my way of tucking Mother into bed and wishing her sweet dreams. It was mainly through these evening phone calls that my mother expressed herself the most.

At first when I asked her how her day had been, she’d tell me, “Oh, I was so busy all day.” Or, “I went out and did some shopping,” or something else she made up. Was she engaging in fantasy to fill her boring days? Was she inventing a story to reassure me and hide her unhappiness? Or was her lack of stimulation causing her to imagine an alternate reality? Is this what happens to prisoners in solitary confinement?

More often in our conversations, she’d reveal her true feelings about her surroundings. In spite of my eventual, reluctant approval of the memory-care unit for my mother as her needs for help increased, she was never able to accept being there. Over a period of time I kept a record of many of her spontaneous statements because they were so painfully poignant and so full of emotional significance.

The following comments I recorded in shorthand, verbatim from Mother during a long phone call when she was more talkative and ruminative than usual. The time was about nine-thirty at night, September 2, 2009, a year and a day after she entered the memory care unit. I’ve grouped her comments into the four major themes that concerned her most.

 

ESCAPE

“Everything isn’t roses all the time, so then I just told them that I was going to leave.”

“I’ll feel better once I get going on my own pattern. Right now I’m just stuck. Once I get myself free, I’ll feel much better. I’ll redeem myself again. I’ll feel more alive again.”

IDENTITY CONFUSION

“It’s something you thought, ‘It’s what should be,’ but it’s just different. So I made up my mind it’s not the way I want to live. It’s not me. You begin to feel like you’re nobody. You can’t live your life like this, so I just made up my mind to be in my own place.”

“I was happy for a while, but now I’m going to straighten out my whole life like I think it should be. You know, how you felt when you were able to do things, and now you don’t feel that way.”

“I liked this place, but then I realized it’s not my life. I tried it, but it’s not what I thought it would be. It’s not my life. I did try it, but it’s just not me.”

FEAR

“I’m going downhill kind of fast, and I didn’t realize it right away. But suddenly I realized my life was wasted.”

“Bit by bit [they] take your life away, wipe you out. [You] go downhill so fast. Down a little at a time, and then I’ll be gone.”

HOPE

“Nobody can tie you down. I made up my mind to do something. I didn’t feel like this was what I was supposed to be.”

“I’ll maybe feel like I’m living again.”

“Don’t worry about me. This is something I have to figure out for myself.”

 

During that entire year, in various phone conversations, Mother often repeated the major themes of escape, identity, and hope, as in these two examples:

“I hope to get home soon. Sometimes I get tangled up in the atmosphere.”

“I feel neglected. The more I think about things, the worse I get. I don’t feel completely whole. I have to find something or do something just to satisfy myself. It’s not as easy as it sounds. The more you start thinking of different things, the worse it gets. You don’t satisfy yourself any way. I don’t feel like I’m the same person that I was. I’ve lost it. And now I’m going to actually find it.”

By the end of Mom’s second complete year in the memory care unit, the effects of her isolation and lack of stimulation were expressed more in fear and confusion than in hope of escape. Again, in verbatim quotations from her in phone conversations, this is how her downward spiral looked from inside her mind:

September 30, 2010

“I’m stuck in this house. I have no friends. Don’t have anything. I feel so put out. I don’t see people I know. It’s just a booby trap they [people who put her there] pulled on me.”

“I’m wondering where I’m supposed to be. I don’t know these people. They’re all strange to me. Heck of a way of living. I don’t even know what this place is called.”

“I’ve been gone from my place for a while. I feel lost. When I get back to my home, I hope I’ll get to see you.”

December 28, 2010

“It’s a little scary. I feel like, ‘What’s wrong with me?’ It feels like you’re out of it. It feels like you can’t control it.”

January and February 2011

“I don’t feel good [emotionally]. How much stuff they’ve taken of mine that I never see again.”

“I feel left out of things. I’m left out of everything I had.”

“It has to be true. It’s been more than one day.”

“My hands are tied, too.”

“I’m not a necessary person now at all; I feel very unnecessary.”

“I don’t know how to explain it. They took care of what they thought I needed and that was it. And then they made me sit down and do nothing.”

 

During the following two years, I more frequently heard her lament, “Everything is confusing to me.  Nothing works like it’s supposed to.” My evening phone visits with Mother became less frequent and finally stopped.  She never had initiated the calls; now she didn’t even pick up the receiver.  She tired easily and was finding conversations more difficult.

When I went to visit her for her 93rd birthday in March 2013, she didn’t recognize me at first.  She opened the present I brought her, and after the aide and I sang “Happy Birthday” to her, Mother just looked at us. “I’m never happy now,” she said. That was almost the last full sentence she ever said to me.

Two months later, she fell and broke her right hip. After her surgery, the unit where she had lived for five years would not take her back. She was transferred to a skilled nursing unit in a hospital where she lived the last three years of her life either in bed or in a wheelchair.  She passed away in June 2016.

My mother’s death meant her final release from a decade of decline and suffering. Watching the changes in her had been like watching a slow-motion tragedy that I was not able to prevent or stop. The only thing I could do was to document my mother’s experience as a loving tribute to her and a way to help others.

I think that my mother’s own words show the feelings and needs that Alzheimer’s patients have––the need for family interactions and memory stimulation, the need for familiar activities, the need to retain their identity and some personal belongings.

As the numbers of patients continue to grow, we must fight Alzheimer’s on three different levels.  First, individuals must become more knowledgeable about new ways to prevent or delay Alzheimer’s. Second, families must plan together for eventual living and financial needs. And third, society must protect the most vulnerable, especially by raising more money for medical research and by building better, more caring, facilities.

No one of us can walk this journey alone.

 

Taken from the book Not Going Gently: a Psychologist Fights Back against Alzheimer’s for Her Mother. . .and Perhaps Herself  (2014), by Constance L. Vincent, PhD

 

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A Patient’s View of Alzheimer’s

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