How does one prepare for 'not knowing' how long mom could live?
My mom is in a nursing home for a little over a year with vascular dementia. This may sound silly, but how does one prepare for 'not knowing' how long she could live? The way things were before we placed her in the home, we never thought she'd last this long. Her health is very good otherwise...best blood count numbers she has ever had. She's in the middle stages; starting to hallucinate, but for the most part still knows family. I'm being selfish, but I sure don't want her decline to the point that she doesn't know anything, can't talk, etc.....I'm having a hard time dealing with things as it is now....any suggestions on how to 'NOT' let myself think too far ahead? She and I have always been very close and it is SO HARD to see her declining. I know 'what will be will be'....but I am truly scared of the future...how will I handle it? What if I can't???
After FIL died she worsened rapidly and had to be institutionalized which she tolerated for a while till she progressed. She had multiple TIAs sometimes being hospitalized. Towards the end she refused or could not walk and the staff told my wonderful SIL that once a patient stops walking they usually die within six months.
As others have said it is a horrible disease but the progression as jessie has found is totally unpredictable and very frustrating.
VaD doesn't have the stages described for it like we see for Alz. I read that the end point is often stroke or heart attack that can happen anytime. VaD can be complicated by the person also having Alz or Lewy Body Dementia -- a condition known as mixed dementia. My father had mixed dementia, but I don't think it is what killed him. I think his blood vessels were too damaged, so that various organs went into failure. I guess this would be called dying of old age. His body gave out.
its very difficult for the immediate carer ( s ) but youll look back some day with an eerie sense of fulfillment that you rose to the scary task and helped your parent in their greatest time of need .
Some turn to their faith, humor, reading books, gardening, cooking,
music, or exercise. We come to this site. I use a combination of all.
I have gone to websites, most by medical teams, read studies, etc., that address life expectancies and I know what they say about vascular dementia. I won't post it here, but it is usually much shorter than those with other kinds of conditions that cause dementia. That's why I don't expect my cousin to leave very long.
I have seen the progression of the dementia over the last couple of years and it is shocking. Often with vascular, is in a stepped decline, so it will be a marked decline and then stable and then it repeats.
I do look ahead, because I have to ensure that she is kept comfortable as the dementia progresses and arrange for her burial. I try not to expect anything when I go to visit. I'm always a little surprised that she knows who I am. We are still able to have good visits for a short while and I enjoy those times. Her attention span is very limited now.
I know this must be more difficult on you since it's your mother. I do feel for you on that. I'd try to get the support of my family and friends and try to keep her as comfortable as possible. Sometimes, reading about what others have gone through is helpful.
My own Mom was going strong at 98. She had bladder cancer for a number of years but her doctor said that isn't going to cause her demise, and he was right. My Mom died due to complications from a serious fall.
Dana
Dementia is a horrible disease. My best advice is to do what they teach in AA ... take one day at a time. Remember that this too shall pass. Remember that knowing "this too shall pass" means that the bad times will pass, but so will the good. Nothing is permanent, nor is it meant to be permanent. Cherish every moment she has where she is lucid. Hold her hand and reassure her when she is not. Know that you can't change the progression of dementia. And that's what it is, a progression...it will ALWAYS march forward. No one can tell you how fast. No one can tell you how many good days she will have.
The fact that she is in a nursing home is a good thing. Please rely on the nurses there. Learn from them how to deal with someone who is delusional...there are methods that will make it more bearable and more comfortable for your mom. Read about dementia. Watch videos from Teepa Snow. Remember that "the long goodbye" is hard, a short goodbye is hard too. Death is hard. It's supposed to be hard. It's ok to fall apart. It's ok to cry. It's ok to not know what to do sometimes. But you WILL get through this. Most children lose their parents in their lifetime. It's the natural way of things, no matter how unnatural it seems in the moment. You can't prepare for "not knowing" you can only know that you will be ok.
Angel