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Hi @mnitchke,
I appreciate your speaking frankly about the reality of caring for your wife. While staff in care institutions are familiar with end-stage disease and death, they are still hesitant to talk about it with family members. I think this may be in part because they are trained to care for, fix and save. They may also be unsure at what stage of acceptance the patient and/or family members are at, and afraid to inquire. Few are trained in initiating conversations about dying and death, thus leaving this horrible elephant in the room. Often they are relieved when the family member raises the subject first, and they know they are free to talk about the inevitable and to prepare well for it.
Here are a few articles from Virtual Hospice that outline the typical progression of disease and death.
- What can be expected with end-stage Alzheimer disease? http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Asked+and+Answered/What+to+Expect+with+Various+Illnesses/Neurological+Disease/What+can+be+expected+with+end_stage+Alzheimer+disease_.aspx
- When Death is Near http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/When+Death+is+Near.aspx
- The Moments After a Death http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/The+Moments+After+a+Death.aspx
Naturally, every person is different and the staff and medical personal at the home where your wife lives should be able to talk to you about her case more specifically. Mnitchke, allow me to make the assumption that you have been able to initiate the conversations about the dying process with staff. Is this true? Have they still been reluctant to discuss?
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I have not initiated a conversation about my wife's end of days. Right now that scenario is way off, as far as I can tell but I am not an expert. On the surface she seems 'healthy'-I know that is an ambivalent statement since her brain health has declined sharply. The home has been giving her lots and lots of extra carbs etc. to cause her to gain weight and she has gained some. She has a difficult time gaining due to her Ileostomy. My wife's mother spent 8 years with Alzheimer's before she met her end. Now comes my selfish nature. I don't want to spend years and years going to a home where my wife doesn't know me, has no memory, no joy, no laughter no life, & cannot share anything with anyone, etc. As I stated in an earlier Post- Her life is empty and meaningless. And the same goes for the rest of the residents there. She still says she 'loves me' but she says that to anyone who comes near her too. If I appear shallow and uncaring, that is not the whole truth. I do care. But at my age I/we were going to do things, go places, have a few years before we couldn't do it anymore due to our age etc. That leaves just me-alone to either do some of those plans or sit and do nothing. I might as well be there with her if that is my future. Do you see what I am thinking? If I can't take off, travel etc. I am a prisoner, and she is the prison guard (I know not the best metaphor) causing me to stay close to home, to her. So I am very close to a selfish decision-to just go where and whenever I please. Of course the 'Home' always knows how to reach me but I want a little more freedom in my closing years. This is all so sad and unfair. Nobody said life is fair. We have to find some joy,peace and happiness in our lives before we leave here. My time for that is shortening.