How I Learned To Be A Caregiver For My Wife With Alzheimer's
Sharing Experiences To Help Alzheimer's Home Caregivers Of Loved Ones.
Nothing Will Separate Us
When my wife was diagnosed with Alzheimer's, I told my adult kids, nothing would separate me and their mother. Over 40 years of marriage made me determined to take care of her, no matter the challenge. I had no idea how this disease would begin to affect her fundamental abilities to function and what lay ahead.
Earning Her Trust
From the very beginning, I found myself in difficult personal, sensitive situations. As Alzheimer’s began to shut down her basic functions, she lost autonomy for bathroom needs, which became a huge challenge. She is unable to speak, so she can’t ask for help when she requires it.
I had to learn how to gently enter into her intimacy without offending her dignity.
To do this, I knew I needed to “build her trust and confidence” in me.
Talking to her softly and letting her know what I was going to do beforehand generated her “confidence and trust” that I needed.
At first, I was very nervous; even though I was her husband for so many years, I had never had to be this intimate with her before. “Will she buck me?” I was really afraid of that. If so, then what do I do?
For example, now I have to take her to the bathroom regularly and change her diapers. I am constantly talking to her, telling her what I am about to do so she doesn't feel offended.
I help her change her diaper pants several times during the day. She knows I am there and welcomes my help. All of this has now become “standard protocol” for her because I have “earned her trust.” Occasionally, she will even come to me with gestures when she needs the bathroom, or she wants to change her clothes by partially undressing, which is her call for “help.”
Earning her trust allowed me to give her a shower every morning, again always softly talking to her, giving her instructions as to what to do with the soap and water. She follows my instructions and does pretty well, as I prefer her to wash herself. I am not sure how long this will last, but my first intuition is to promote as much autonomy as possible. I am always vigilant and alert to her every move and available for the support she may need.
Drying her off with a towel, I am always joking, congratulating her along the way, getting that smile. “Humor helps build confidence and trust.” She becomes “calm and relaxed.”
I had to learn to dress her in the morning and undress her in the evening and help her put on her pajamas and still conserve her dignity. She is unable to do so by herself in the right order. Once more, it is essential for me to engage in conversation with her, speaking softly, provide a clear explanation of my next steps, and incorporate humor whenever possible to establish her trust. Every so often, I make a joke when she tries to dress out of order, to make this event “fun,” and she laughs with me at herself. She is always cooperating with me fully. This has always been part of my approach to earn her “confidence and trust.”
The first few days, I was nervous and felt very awkward about entering into her intimacy and possibly threatening her self-respect. However, I soon realized she did not feel intruded upon, or her privacy violated at all. As a matter of fact, she was acting as if this were all a normal routine. Wow, ok.
I began to relax as I could see I earned her confidence and trust, which is vital to giving my intimate support. Talking to her, and telling her what I was going to do, was crucial.
She now realizes she can “depend on me” which is essential to my caregiving.
Avoid Anger-Frustration
I learned to avoid expressing anger or frustration, which can be difficult to conceal but critical to do so as not to damage the “trust and confidence” from my wife. When I didn't hide my frustrations scolding my wife for something simple, afterward, I felt terrible and guilty because I could see she felt bad about herself. That's the last thing I want to do. I could never forgive myself when that happens. Besides, nothing good comes from that. It just makes things worse, affecting her demeanor, disposition, and trust to interact with me. This has been my most terrible learning personal experience. I am getting much better at hiding my frustrations, though I still have a ways to go.
Logic Is Not Logical
To avoid expressing frustration and anger, I had to understand that simple logic for me is not the same logic for my wife with Alzheimer's. With her, the logical order of things simply doesn't exist. For example, when getting dressed, she may start with her shoes. She has a different logic, which I can't discover exactly what it is. As her caregiver, I learned I can avoid frustration knowing there may not be any logical sequence of events, especially when my wife tries to do something on her own. By accepting the illogical and “behaving as if everything is normal,” I am able to prevent the expression of my frustration and “protect the trust” of my loved one.
Joint Exercise
Joint exercise is a crucial stimulus that not only strengthens muscles but also fosters “trust and interaction.” She will often lead me by the hand to the front door, telling me in her silence she wants to go outdoors. She loves playing handball with me when I take her for walks twice a day. I help her exercise on the fitness equipment while standing beside her, and she follows my instructions. I feel like her “buddy” when we play and exercise. This is of utmost importance to me because we are interacting with her complete “trust.” She is always holding my hand or arm on our walks, which tells me she is “connecting” with me.
This “connection enhances” trust and confidence in me.
Earning this “trust” means my caregiving takes on a whole new meaning and level of interaction. We are now a “team.”
Thank you, Kimberly. Humor truly works. My wife laughs along with me from my jokes. I never miss an opportunity. It definitely diffuses any possible anxiety on her part, especially in challenging personal situations.
Sammie, your positive attitude often makes all the difference. None of the "experts" has all the answers since each person afflicted is unique in how their bodies respond to what is happening to them mentally.
My wife and I had lived in a Senior Living facility for four and a half years. We were in the Independent Living section and met a fellow whose wife was in memory care at the time. His wife had been diagnosed with Alzheimer's 19 years earlier and had progressed from a point of being able to do nearly all physical activity herself to the state where she was totally wheelchair bound and not capable of any normal tasks.
He spent much of his time with her but was wise enough to recruit the assistance of aides when her care became too much for him. By the time we met him, he needed aides every day, multiple times a day (he was 83).
We left that facility and have been living in a regular apartment for the past four years. My wife's condition began deteriorating long before we left there but the writing was on the wall about the level of care she would have received if suddenly I were out of the picture.
Reluctantly I agreed to her being placed under Home Hospice Care a year after we moved. That came with both weekly nurse visits and aides 2-3 times per week. I resisted getting aides to help (motivated more by my own ego than other reasons) but soon discovered that their training enabled them to do personal care far more efficiently and effectively than I could. I learned a lot and was able to provide better care for my wife the four days a week when the aides were off. She was discharged from HHC less than a year later and we enjoyed about 18 months of manageable care before a relapse caught us off guard earlier this year. She is once again on HHC but now it is more in line with comfort care rather than restorative care.
You're still in a good situation with your wife because she can do so much on her own. I know you treasure that even with the setbacks that accompany the condition.
All the best to you both.