I'm so sorry that you have to go through this. I must say that having a family member with dementia is one of the most stressful, heart-wrenching experiences there are on earth. Having to watch this person you've known all your life disappear, with little visible evidence is awful. I'm so, so sorry. After working with patients and having my own family affected by dementia, I have a few things to offer, if I might. Different people will react differently to your parents' decline. Arm yourself with information now, and get your siblings and other family to do the same. Vascular dementia has a relatively predictable course, with some possible complications. Knowledge is one of things that will best help everyone cope. I don't know how close you are to your siblings, or how close they are to your parents, but no matter what, you will need to support eachother. Having a support group that is strong and includes your family (and friends) is very helpful in mitigating some of the stress. It means the difference between shredding a solid family and bringing a distant one together. Make decisions about care now. Make sure your parents have a Living Will that designates one person to make health care decisions when they become unable to. If you haven't already, talk to your parents about their Do-Not-Resuscitate status. If they should need it, do they want to be intubated? At some point, many people in advanced stages of dementia require a feeding tube for nutrition and hydration. Do your parents want this? This stuff is awful to think about, but the sooner your family understands your parents wishes, the easier it will be when those decisions present themselves. Also know that as the disease progresses, your parents will become unable to care for themselves. They may become hostile and aggressive. They will continue to forget more and more, and start to make up stories to fill in the blanks. While reminding them and reorienting them can be helpful now, there will come a point where arguing a memory is more painful than it's worth. It's really really hard to let go of their identity, but I found it helpful to remember that all you can do is work to be happy, and to keep them safe and happy. To me, the facts aren't as important as the emotions that a memory evokes. When my great-grandmother told me for the eighth time about the dolls she was going to make and the room that her husband had finished last month (he's been dead and gone 15 years), and asked me if I had ever met Bridget (my mother), I smiled and said "Yes, she's a wonderful woman." and for the moment, we were both happy.
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Date: 2005-10-04 03:17 pm (UTC)After working with patients and having my own family affected by dementia, I have a few things to offer, if I might.
Different people will react differently to your parents' decline. Arm yourself with information now, and get your siblings and other family to do the same. Vascular dementia has a relatively predictable course, with some possible complications. Knowledge is one of things that will best help everyone cope.
I don't know how close you are to your siblings, or how close they are to your parents, but no matter what, you will need to support eachother. Having a support group that is strong and includes your family (and friends) is very helpful in mitigating some of the stress. It means the difference between shredding a solid family and bringing a distant one together.
Make decisions about care now. Make sure your parents have a Living Will that designates one person to make health care decisions when they become unable to. If you haven't already, talk to your parents about their Do-Not-Resuscitate status. If they should need it, do they want to be intubated? At some point, many people in advanced stages of dementia require a feeding tube for nutrition and hydration. Do your parents want this? This stuff is awful to think about, but the sooner your family understands your parents wishes, the easier it will be when those decisions present themselves.
Also know that as the disease progresses, your parents will become unable to care for themselves. They may become hostile and aggressive. They will continue to forget more and more, and start to make up stories to fill in the blanks. While reminding them and reorienting them can be helpful now, there will come a point where arguing a memory is more painful than it's worth. It's really really hard to let go of their identity, but I found it helpful to remember that all you can do is work to be happy, and to keep them safe and happy. To me, the facts aren't as important as the emotions that a memory evokes. When my great-grandmother told me for the eighth time about the dolls she was going to make and the room that her husband had finished last month (he's been dead and gone 15 years), and asked me if I had ever met Bridget (my mother), I smiled and said "Yes, she's a wonderful woman." and for the moment, we were both happy.