If you choose to care for your loved one with Alzheimer’s at home — whether with the assistance of in home health care or an Alzheimer’s day care facility, or not — the balance of your life will shift. It will likely need to in order to meet your loved one’s and your new needs. You will probably find that you need to change expectations for home life, adjust time patterns, rearrange the physical space, and more. For me, it helped to redefine my home, at least in part, as its own little Alzheimer’s assisted living facility or memory care facility and our days as Alzheimer’s day care. Of course, I couldn’t make all the necessary changes by myself. Surrounding myself with competent, knowledgeable people, throughout, helps immensely.
Caring for Someone with Alzheimer’s: What Can Family Caregivers Do To Help?
This decision is not for everyone, but I when my mother was diagnosed with Alzheimer’s, I decided to help her at home, my home, for as long as possible.
I feel that, despite all the difficulties, it’s the right choice for us. But to make it possible we had to learn to ask for and accept help and in home health care. It’s worth it. Whenever I come home and she smiles at me, I have confirmation that I doing the right thing (for now), even if it is a tortuous and uphill journey.
The choice of in home health care instead of a daycare center near me or a nursing home was, for my famiy, like putting together the pieces of a puzzle. Could we take all the pieces — her needs and our needs — and make them fit?
By myself, I wasn’t able to do it. I felt lost and inadequate. I began to think of of my mother only as a patient, as ill, and I lost the ability to see her as person who needed to feel unique and important. Asking for and receiving professional care has been essential in helping me to overcome my emotional difficulties as a caregiver and this, in turn, has empowered me to better care for my mom while avoiding the adjustment disorder and depression that can plague so many family caregivers of loved one’s with Alzheimer’s disease.
At first I didn’t realize how hard it was for me, and for her, to accept the Alzheimer’s-related changes. These days, Mom is often confused and has empty memory moments. She cannot do day-to-day activities and struggles to find the right words. She chooses clothes haphazardly, wearing the wrong layers on the outside because she does not know how to dress anymore. She places objects in the strangest places and despairs because she cannot find them. She has sudden and immature mood swings and she has less and less interest in or initiative for many activities she once adored. And, she no longer has a sense of time or daily rhythm.
An Alzheimer’s-Friendly Home
In my physical home, there were many practical things that needed to be handled. It was not suitable for hosting any elderly mother, let alone a mother with motor, sensory and cognitive difficulties.
Everything had to be reviewed. Every room was potentially dangerous. Living alone and without children, for instance, I never thought about the dangers of the slippery floor or about how an older person with Alzheimer’s could stumble upon my wonderful Turkish rug or upon the steps that seperated my living room and kitchen.
The sofa near the window was an obstacle that prevented one from seeing the outside and it was also a hazard that could cause a fall if one leaned over it to look out the window.
And the door keys? Privacy wasn’t worth my mother getting herself locked in a room.
In the kitchen I had to add a smoke detector, eliminate all useless tools and furnishings, and put away dangerous items. The only things accessible were the essentials.
I even rearranged the rooms so that my mother could have the largest bedroom. It gave her more space for freedom of movement. I gave her an adjustable bed, took out the bedside table, and secured her armoire tightly to the wall. I replaced the handles on her armoire so they’d be bright and easy to recognize when opening.
I put all her photos and favorite items in a single drawer and called it her “therapeutic” drawer. We went there often when she was bored or anxious. The items kept her busy and gave her peace.
I put her clothes away based on type and labeled her drawers with photographs. I felt very proud of this adaptation that I’d learned from a visit to a nearby memory care facility.
Luckily, my house has no balcony or stairs. If I’d had those things, I suppose I would have had to install an additional door or gate and Alzheimer’s-proof locks.
The bathroom was the hardest. The bathroom step into the shower was difficult and the mirror made my mother confused. I added a handrail, non-slip mats, a non-glass, see-through shower door. But we still struggle with the mirror.
From cabinets I removed any potential poisons — such as cleaning supplies — and I even had to move my washer and dryer to a different room in my house. They were too noisy and distrubing to my mother.
While at times it seems like the home adaptations will never end, and truth be told I continue to make changes as my mother’s situation changes, I feel like we are living pretty well.
Looking for the Positive
Thinking back now on the early days soon after my mother’s initial diagnosis, I remember that I saw only darkness and disorder. At that time, I couldn’t imagine anything positive about the situation or about this new life of Alzheimer’s day care I was embarking upon.
Whereas previously my extended family and I had each had an autonomous life, coming together only for feasts and special occasions, we now have to talk often. We have to negotiate important decisions, find compromises and agreements, and each give up a portion of our “me” time and freedom for the sake of our mother and her care.
In this new space, we have the chance to reflect on life priorities and to discover new, creative ways to find fulfillment for ourselves and for our time with Mom. I, personally, have rediscovered the beauty of walking slowly, without a goal, with her by the hand, without talking, and without embarrassment.
I have started listening to music instead of watching television (TV confuses Mom) and together we have taken up singing old-fashioned songs.
And, I brought back an old ritual — a special, cooked Sunday lunch. I’m particularly proud of this as it brings the family together at the start of each new week. But the impetuous was very practical. My mother wasn’t eating well until I discovered that if I cooked her old recipes, her appetite was better.
Home has taken on a different meaning as I’ve even learned to accept that while we live together, my mother does not recognize me. This has been the hardest thing, but I rest in the fact that while she does not remember who I am, my mother knows I am the most important woman in her life. With shrewdness she’s never abandoned, she greets me saying “Hello treasure, how are you?”
My mother’s past and future have no meaning to her, but we have special moments. And when all the people she loved in her previous life are reunited for Sunday lunch, it’s like we’re defeating time.
The pieces fit and when they come apart or new pieces show up, I adjust again until we find a new balance. And so we go on.