It is heartbreaking when a family member develops dementia, Alzheimer’s, or some other cognitive issue. And the situation can be further complicated by having to move the loved one into a safer living situation where his or her needs can be met. Then there is the decades’ worth of possessions that need to be dealt with, especially challenging when the person is unwilling to let go of everything.
That was the situation facing Pat Averbach and her siblings when their mother developed dementia following a major illness. While they were ultimately able to find a facility that met her needs, the transition was fraught with difficulties and setbacks.
This is Pat’s story.
WHN: You mentioned that when your mother was in her early 80s, she was relatively healthy and independent, and therefore had expected to remain in her home for the foreseeable future. What transpired that changed her plan?
Pat: My mother had only one serious illness, but it was a doozy. She had an intestinal blockage that burst causing her entire system to go septic. She underwent two major surgeries that resulted in months of hospitalization and long periods of delirium. Frankly, we doubted that she’d ever regain consciousness, much less make it home.
But she was a tough old bird and eventually walked out of rehab with only the help of a walker. She recognized everyone, including doctors, nurses and therapists and could carry on a sensible conversation so we assumed her mind had survived intact.
She was irritable and demanding, but she’d always been irritable and demanding so we weren’t particularly concerned. However, she could no longer drive and needed help with shopping, cooking and laundry, tasks she’d easily performed before her illness.
WHN: When did it become apparent that she had developed dementia?
Pat: My mother had already moved into an assisted living facility before my siblings and I realized the extent of her cognitive impairment. She was quite intelligent and used that intelligence to effectively mask her disability, plus, she didn’t have typical short-term memory problems.
No one in the medical establishment—neither her own doctors nor the staff at the assisted living facility—brought up the issue or took us aside and said, “You know, your mother is suffering from dementia” so we attributed her mood swings and poor judgment to depression and to a difficult personality.
Once we broached the subject and took her for an evaluation, everyone became willing to discuss her mental status with us, but we had to initiate the conversation. Up until then, we’d attributed her cognitive deficits to her illness and assumed they would resolve as her health improved.
However, as she became increasingly irascible, made more irrational demands, stopped reading and could no longer follow a story on television, we suspected she was suffering from dementia. Eventually, a psychiatrist and a gerontologist confirmed our suspicions.
In retrospect, there were clues that there was more wrong than just typical old age. For example, when she had decided to make the move from her home to an independent living facility, she decided she wanted a large two-bedroom corner suite, even though she didn’t need the additional space and higher cost. But we deferred to her decision, figuring it was her life and her money. But we had to hire home health care until that one was available, which was an added expense.
Here’s another indicator we missed: My mother’s physical therapist recommended a mechanical chair with a seat that could be raised and tilted forward to assist her in standing. She insisted on being taken to every store in the city to check out every conceivable option, but couldn’t make a decision. Under pressure, she finally allowed me to purchase one, but it frightened her and she refused to use it after it was delivered. We ultimately had to return it to the store. Fearfulness and paranoid delusions were her primary symptoms as her dementia progressed.
WHN: As the eldest child, you took on most of the responsibility when it came to assisting your mother with downsizing and packing up. What were some of the challenges you had to deal with?
Pat: My mother had unrealistic expectations about what she could take with her when she was leaving her home, which was the most difficult part of my mother’s transition. Initially, she had asked me to help her sort through her things, pack up what she’d take with her, and discard or give away the rest. This all sounded very sensible and I was happy to help.
The problem was that, as we went through her things everything went into the “take with” pile. I explained again and again that this wasn’t possible. Even if she’d had room to store two sets of good dishes, which she didn’t, there would be no occasion to use them. It didn’t matter. She wanted them. She’d find a place for them somewhere.
It was the same with the silverware, the paintings, the bric-a-brac. She was willing to sell some of the furniture, but still wanted to keep more than would fit into a tiny apartment. By the time we were finished, I’d accomplished nothing useful and it was time for her to move. I had to repeat the entire sorting and packing process by myself once she was no longer there to “help” me.
WHN: What did you do to help make her new place feel more like home for your mother?
I used her old sofa, two chairs, and a television, then decorated the new rooms with familiar tchotchkes and pictures. She never asked what happened to the things we left behind, and none of the grandchildren wanted any of those family items either.
While in my mother’s case, she was willing to move, I can certainly understand that for others, losing a beloved home, familiar possessions and personal independence could trigger grief, depression and fear. What I would recommend is that family members take those feelings seriously. Sympathize with the loss while playing up the benefits of the new living arrangement. Pack up a few treasured objects and a lot of photographs. Make a scrapbook of photos and mementos of the old house, furniture and garden. If necessary, schedule a few sessions with a mental health counselor skilled in dealing with grief and loss.
WHN: Has your experience with your mother changed your view on what you’re keeping, or on other “later years” plans?
Pat: I’m in my late sixties now and my husband and I will be giving up our big family house to move to a condo in the next year or two. After seeing how the objects that held such fond memories for my mother meant nothing to her grandkids, I’ve learned my lesson. When I downsize, it’s all going. Leave the stuff, take the memories, then pass those memories on in stories, not in boxes.
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