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Caregiving Q&A With Barry Jacobs

Clinical psychologst and family therapist answers your questions about caring for a loved one

Comment From Diane D.: When is it time to place ALZ-dementia survivor with moderate DX?

This is an excruciating, long-debated question for many families. The short answer is that it depends on what you are willing to tolerate. Seventy percent of Alzheimer's patients reside in their own or family members' homes, some with advanced symptoms of dementia. But families often place their loved ones during the middle phases of Alzheimer's when patients are frequently agitated and disruptive. This is what happened in my own family a year ago.

My stepfather repeatedly wandered around his apartment in the middle of the night, rummaging through closets and taking the metal covers off of the electrical outlets. He was in danger of shocking himself electrically. That was the last straw for my mother; she placed him soon afterward. I believe it was the most loving thing she could have done for him and for herself at the time.

When it is time for you to place your loved one, Diane, I hope you feel the same sense of surety that my mother felt.

Comment From Jeanette: What are my chances of getting Alzheimer's if both my mother and uncle (her brother) developed the disease in their early to mid-70s? My brothers and I are terrified!

Research suggest that genetic variables play only a small role in the development of Alzheimer's dementia in most people. Early-onset dementia — before age 70 — is more likely attributable to some genetic factors. Your family physician can more likely speak to your relative risk. The best defense against dementia for you and everyone else is taking care of your health by eating well, not smoking and keeping your cholesterol and blood pressure in check.

Comment From Lynda Primavera: I am the only child of a 90-year-old mother with Alzheimer's, which is progressing. I work full time (leave the house at 7 a.m. and return around 4 p.m.) and she is alone all day long. She used to be very active, but now refuses to leave the house. I had a service come to pick her up to bring her to a chair yoga class; she refused to get in the car. They were great, but after the third refusal, they could not come any longer. I tried to get her to go to a day care center, she refuses. I mention nursing home and she screams and cries. She does not want a caregiver in the house, and I am also hesitant about having someone in the house all day; and the expense is not something I can easily cover. She goes from the den to the bed. She surrounds herself with books, magazines and the daily newspaper — she used to be a avid reader — she looks at a few pages of things, but of course, doesn't finish or remember anything she reads. She sleeps constantly. She refuses to eat normal meals. All she wants is ham and cheese. If I don't buy that, she doesn't eat at all. She used to be an incredibly healthy eater. I am extremely worried about leaving her in the house all day while I'm at work — I teach school, so I call her on my lunch and free period (if I'm not subbing) but that is the only contact she has during the day. This sounds so calm as I write this, but my stress level is over the top. I do not know what to do. My only break is when I'm at work.

There comes a time in the lives of families dealing with a progressive dementia when the most prudent step a caregiver can take is to use her own judgment instead of the impaired judgment of her declining loved one. You are a devoted daughter, Lynda. You want to respect your mother's dignity by continuing to support her right to make choices for herself. But the choices your mother is making nowadays are potentially harmful. Her poor eating habits will jeopardize her health; her excessive sleep will ultimately sap her physical strength. In the event of a fire or other emergency, I doubt she'd have the wherewithal to take steps to protect herself.

To best help her now, you need to take greater charge, despite her vehement protests. I suggest arranging for her to go to an adult day care center or have a home health companion with her most of the day. Yes, each option is expensive. Yes, she will balk at both. Surely, that will make you feel guilty. My hope is that you will take solace in knowing that you are making the kind of thoughtful decision for her that, if she were of sound mind, she would be making for herself.

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