Response to the reader Deborah

The below post written by me was published on the Alzheimer Reading Room blog a couple of days ago. 

In response to the reader Deborah who wrote:

I am caring for my Mother-in-law she has advanced Alzheimer and a serious heart condition. I have felt all on the emotions that you shared. The loneliness is amazing.

We recently acquired the help of Hospice. I now have an aide 4 hours a day, 5 days a week. I have been able to finally sleep. My out look has improved. We are often in crisis and it wears all of us out.

I feel bad for asking god to just let her die in peace. Does anyone else feel that way?

 

Reading your question I feel the guilt you are feeling for having these thoughts.  Yes, I am sure many caregivers feel the same way as you.  Being a nurse and having seen the realities of end-stage disease many times death is not always the worst option.   I ask God frequently to spare Lily and take her before she gets further along in her disease process.

Why you might ask?..... Lily has a reasonably good life at this point. True, from the neck down her health is great, but I see my mother slowly withdrawing from the things in life that have always made her life enjoyable. Looking down the Alzheimer road I see what we have in our future....eventual loss of all her abilities to take care of herself and participate in a quality life.

Lily will no longer be able to articulate her feelings or have the ability or desire to nourish herself becoming so weak that sitting up will not be possible. Withdrawing from life,  Lily will sleep her days away and slowly starve till her body begins to shut down. I will never consent to a feeding tube to extend Lily’s life as dying of starvation would be easier than lingering in a state of despair for her and her family.  You see Alzheimer's disease is always 100 percent fatal.

If her heart were to give out before developing the symptoms of end stage Alzheimer's that would be a blessing and a much easier death.  I have no guilt saying this as I know my Mother and we have discussed this topic prior to her diagnosis and if she were in her rational mind she would tell me not to do anything to prolong her life. She would hope to go quickly and be kept as comfortable as possible. Even now from her Alzheimer point of view the other day she said put me in the grave when I go kaput.  What she doesn't understand is that is indeed what is happening to her each day bit by bit.  She would be mortified if she knew she was spending time coloring as a child would (in adult day care), repeating herself over and over, or the fact that she needs constant supervision.

So for me the choice is simple. I will continue to make what time she has left as comfortable and enjoyable as I can but when the time comes that her body begins to fail I will let nature take its course holding her hand, loving her, and letting go.