How to cope with grandma's dementia.
October 7, 2012 9:41 PM   Subscribe

Looking for resources regarding dementia/Alzheimer's for my family.

A few weeks ago, my grandmother had to be taken to the hospital for a broken hip. As she has lived far away from myself and the rest of her family (by choice), none of us had seen her since the summer. Once she arrived at the hospital, we discovered that her dementia has become quite severe in a very short time. She doesn't remember any of us very often, if at all. She repeats her stories and can't keep them straight, has started to get agitated at night (sundowners syndrome, it is assumed), etc. She also has wanted to die for quite some time (even prays in her sleep for it), so we believe that she is having eating issues because of this. About a week ago, she was moved to a nursing home near one of my sisters. It is almost a blessing that she doesn't know where she is because she would be terribly upset. She gets upset anyway and just last week I had an awful experience where she was begging to be taken home and told me that she couldn't believe I would do this to her. This was all quite upsetting to me, to say the least.

We have settled the legal parts of this, but I am having a hard time with the emotional ones. My family has not extensively discussed this aspect of the situation, but I know that I am struggling with it, so I can only assume others are as well. My grandmother decided a long time ago to stay in her house and far away from family, which is something that I have resented and so refused to go and visit her for several years. Now, I can visit her whenever I like but she doesn't know me.

This is my first experience with anything like this, so I am looking for information about not only the disease itself, but also how families can cope. I know there are a lot of websites out there that I have only begun to explore, so I am looking for suggestions for those as well as books that I might be able to gift to members of my family.
posted by itsacover to Human Relations (5 answers total) 8 users marked this as a favorite
I've heard very good things about The 36 Hour Day.

Sorry that you and your family are going through this. It is very challenging.
posted by treehorn+bunny at 10:03 PM on October 7, 2012

Best answer: The 36 Hour Day is a good book but intended more for direct caregivers.

Maybe your grandmother's self-isolation was the leading edge of dementia. People sometimes withdraw from social involvement because their memories are beginning to fail them and they begin to feel uncomfortable in situations where they're expected to join in conversations or follow what's going on.

But that wasn't about you, or about anyone else. This is the key thing to keep in mind when dealing with a relative with dementia: it can feel like a rejection, but it isn't. It's an illness. I know this can be hard to keep in focus if a person you love suddenly doesn't know you, or says something hurtful. It can feel like a judgement on you. Just remind yourself this is not about me. It's an illness, for which neither you nor she are to blame.
posted by zadcat at 10:36 PM on October 7, 2012

Best answer: The Alzheimer's Association or the Alzheimer's Foundation of America may have a local chapter or be able to direct you to local resources, such as a support group. The process of dementia can be very wrenching to a family especially at first, and separating the emotional issues is important.

There are a few movies you may find helpful. I would recommend in particular Iris and Away From Her. In addition the documentary Complaints of a Dutiful Daughter depicts a wonderfully humane approach to handling dementia.
posted by dhartung at 1:21 AM on October 8, 2012 [1 favorite]

Best answer: When my father had Alzheimer's, I would try to distract him with things. Like, if we brought out a puzzle, he was always up for it, or he would try painting or whatever for a few minutes. He also enjoyed some movies (Up, the music in Oh Brother Where Art Thou). I tried a lot of the things sold and books from the Alzheimer's Store.

I recommend the book "Love, Loss and Laughter: Seeing Alzheimer's Differently" by Cathy Greenblat.

My parents lived in North Carolina, and their local hospice was very helpful and once someone had a diagnosis of Alzheimer's, they would come to the house, and also to the nursing care facility, sending an extra nurse to check on my dad, and also regularly checked in with my mom to see how she was. I cannot say enough good things about them.
posted by katinka-katinka at 3:24 AM on October 8, 2012

Best answer: Contented Dementia has been helpful to my family.
posted by paduasoy at 9:24 AM on October 8, 2012 [1 favorite]

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