Looking after Marie

A case study of a dementia patient cared for in her daughter’s home

By Mike Takieddine

Angel

Hello, I’m Angel, the caregiver. I look after Marie. The agency first chose me for this assignment more than three years ago because I had taken care of another Alzheimer’s patient, though briefly. At that time, Marie was still continent and would do most things for herself. You would just encourage her gently, like for example lay out the clothes you want her to wear on the bed and help her with the first item, and then let her take her time doing what she could with the rest.

But things progressed, and she wandered outside of the house on a couple of occasions. She also became not exactly non-ambulatory, but if you stood her up, she would freeze and not know what to do. She also started falling, and the last thing we needed was a broken ankle or worse. So Amanda and I had to make new arrangements, and I ended up living-in with Amanda and Marie. Now I live-in for two or three weeks at a time before I take a few days off. When I am planning to go away for a few days, Amanda would call Geoff at the agency and he would send over a relief caregiver to live-in for the duration of my time off.

Amanda

Hello, I’m Marie’s daughter. Let me take us back three or four years when Marie had first been diagnosed. The best thing that happened at the time was that I met Geoff and hired his agency to send me caregivers for my mom. Imagine that of all the people he had, he sent me Angel who truly is an Angel. At that time, Marie could still take care of most activities of daily living with a little encouragement. I have to tell you though that this is the most wonderful mom ever. I was an only child, and she’s been all love and kindness for as long as I remember. She had lived with me since she’d been widowed, and we had an amazing bond. I had naturally sensed at one point that her cognitive faculties were declining, so the diagnosis was not a huge surprise.

Then one day I placed her, much to my consternation, in a home for a few days so as to allow me to attend the wedding in California of the daughter of a close friend of mine. She spent exactly five days in the home, more than enough time to see her decline noticeably in both appearance as well as behavior. For a while, I barely recognized my own mom. Then to top it all, I noticed red marks on both her forearms. I knew what those meant as I’d read about it. They were marks of “shaking”. Frustrated caregivers who couldn’t slap or hit the patients for fear of retribution would hold the non-complying patients by the forearms and shake them like rag dolls. I decided right there and then that Marie would spend the rest of her life with me. Coming across Geoff at the home care agency at that point was as lucky a stroke as one could possibly have.

Geoff

Hello, I’m Geoff. I’m with the home care agency that looks after Marie. Amanda is an exceptionally devoted daughter, and having been in a position to help her out over the years has been a blessing. It has driven me to always pay special attention to households that included persons with Alzheimer’s. Right at the start, Amanda wanted me to share my experience in caring for Alzheimer’s patients, and all I could tell repeatedly is “give her love, talk to her, caress her, keep her hydrated, feed her well, and walk with her in the outdoors.” I shared that with her to the point where it became a running joke.

Caring for Marie was a challenge, for we knew right up-front that it would be for the rest of her life. In most cases where we have to care for a person with Alzheimer’s, it is for a short duration until the family could no longer cope, and the patient would be placed in a ward for the cognitively impaired. Anyway we lucked out for Angel was available, and I knew she’d done a stellar job on her prior assignment.

For an Alzheimer’s patient, we preferred mature caregivers who could be trusted to be patient and not “lose it” with the patient. She had to have flawless character traits, with no drinking or drugs or boyfriends going in and out of the patient’s home –a strict taboo. We would coach the responsible party at the patient’s home, in this case Amanda, to give the caregiver respite care whenever she could, to let Angel go out to the movies or the library or, later when Angel became a live-in, which meant that she also slept there, to give her a night off occasionally. You simply can’t let any human being stay too long face-to-face with a person with AD. Needless to say, Angel proved to be a true gem, and she and Amanda frequently swopped caregiving duties, the person on call enabling the other person to take her mind off the disease and its inhibiting manifestations.

I also knew how expensive it was to keep a full-time caregiver around-the-clock. I explained that to Amanda at the beginning of our relationship as I rattled off several other options to her. Those included the option to go into a Medicaid-certified nursing home that would take Marie at no expense at all for the rest of her life. Medicaid is the government agency that cares for the very poor, and one had to have a total net worth of less than $4,000 to qualify. Anyway, Amanda had already made her mind up. She assured me that this was what she wanted. My colleagues and I at the agency always look to Amanda for special inspiration. In the time that we’d been in business, we had never known someone with her tenacity and compassion.

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