Alzheimer's advice

Advice from an Alzheimer’s Wife

My Journey as an Alzheimer’s Wife: Til Death Do Us Part

When I met our care manager, Julie, I had been caring for my husband since his Alzheimer’s diagnosis 13 years prior. We have no children and our siblings lived far away.Someone showed me Aging Wisely’s blog. I decided I could probably use their help.

I told the care manager our story. I outlined my daily routine, which started at 5:00 a.m. and ended long after my husband, Ben, went to bed. Julie asked what I needed the most, and I was at a loss for words. “Just help,” I said. She kindly offered lots of ways she could help. But I told her, “No, that’s something I do for Ben.” I admitted to her that all of the things she listed were “mine” to do for him, based on our wedding vows. Julie listened patiently and asked me to recount our vows. She then asked her where in the vows it said that I had to do all of those things by myself.

I began to cry. She didn’t realize the impact (and relief) her words had on me. We set up another meeting for Julie to do an assessment. I hugged her and said “thank you” with such deep feeling. Just then, Ben stated that his pants were wet. So, the routine of my day as an “Alzheimer’s wife” continued.

Over the next few months Julie completed her assessment and we got to know each other better. I declined most of her recommendations, but enjoyed the chance to talk to someone about caregiving. She really understood what it was like dealing with Alzheimer’s. I started to see how the recommendations would help. Julie helped me find an attorney to complete our legal documents, put bills on autopay, and several other things that made life easier.

Ben’s Alzheimer’s was becoming worse, and his physical health began to decline. After a particularly difficult weekend, I called Julie to say I thought it was time. Time to move from our condo into an Assisted Living Facility (ALF), and get help for Ben.

We made plans to visit two ALFs nearby. We talked it over a bit and I made a choice. Our condo sold quickly and Julie helped with all the moving arrangements. We settled in, but didn’t have much interest in the facility’s activities. I gave up the housekeeping, laundry, cooking, cleaning and shopping. I focused on my responsibility as I saw it: Ben. I continued to bathe, dress and clean him between accidents.

Over the next few years, I began to relinquish some of the Alzheimer’s caregiving tasks, slowly and reluctantly. I have to admit I needed the control and liked feeling needed. Life was getting pretty comfortable as I finally began to trust that Ben was okay with others helping him. I began to understand that it didn’t make me less of a wife. I started going out a bit more, and even put on some much-needed weight.

Unfortunately, in addition to the Alzheimer’s progressing, Ben was eventually diagnosed with cancer. The doctor said he only had about six months to live. Twenty-two months later, Ben was still with us. It was so important that I keep him at home with me. Julie made sure I could by increasing services and negotiating with our ALF for additional help. She set up hospice care for support, and I was able to be with Ben when he died at home in his bed.

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Tips from My Experience as an Alzheimer’s Wife

  1. Educate yourself on the disease and what to expect. Various websites and Julie’s expertise helped me deal with different behaviors I encountered. Setting up a routine is essential for both the Alzheimer’s patient and the caregiver.
  2. Find someone to talk to about your situation. I talked to my relatives and friends about practical matters, but Julie would just listen patiently to what I was going through. She reassured me that I was doing my best. She offered suggestions, but let me take them as I was ready. For some people a support group could fill this role, though I preferred a one-on-one conversation.
  3. Get help, but take things at a pace that’s comfortable for you. I do wish I’d gotten help sooner. But, we each have to find our own path. This is why I am forever thankful for Julie’s help. She did not rush me. She did not argue when I refused something. She didn’t tell me there was only one way to do things. But, by listening and understanding my concerns, she was able to gently suggest things. Each week after she left, I would process what she said; many times this led me to making a positive change.
  4. I would highly recommend consulting with a care manager. It is so reassuring to have an expert who knows you to act as a sounding board. When other family members think you should be doing things differently (or you doubt yourself) this is especially helpful.
  5. Think about the true meaning behind vows and promises. Julie helped me reflect on how I could live up to my vows without having to do every task myself. You may promise a loved one you’ll always keep them in their home. Later, you may realize you’re actually doing more harm by trying to keep the specific promise rather than its spirit.
  6. “It takes a village.” Realize you’re a better Alzheimer’s caregiver with the help of the right people. Ben was never in better shape than when the caregivers at the ALF started helping him. My health improved drastically when I was able to focus a little time on myself.

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