Yesterday I was called by the nursing home where my mother has been cared for during the past 3 years.  She has profound Alzheimer's disease.  She has not spoken a meaningful word for 2 years, as far as I can tell.  I live 2000 miles away.  For many years, I tried to move my parents here, where I have plenty of room in my house.  I could have given close, attentive care.  They didn't want to move.  My father died last year.

 

My mother's name is Maxine.  She was born in a one-room house with a dirt floor, on a tenant farm in western Illinois.  She was named for the midwife who delivered her, as a reward.  Her mother lost the previous two, and stated if this one lived she would name her for the midwife.  She went to school in a one-room schoolhouse.  For much of her childhood, her family survived on turnips and bread, occasional animals that her father shot, and whatever little they could buy.  She studied, went to "the big city" (30,000 people), found work as a stenographer, met my dad and married him.

 

I won't tell her life story here, except that she was married to the man she loved, and depended on, for 65 years.  When he died last year, her dementia prevented her from being aware of the loss.  She had an endless capacity for seeming innocent, was well meaning, laughed easily and often.  She was very religious, apparently never questioning  her religion or the people who promoted it.  Her version of religion didn't seem to promote hate, but was filled with judgement.

 

Unfortunately my desktop computer died last week, and I cant scan a better photo, but she would probably like this one from the 60s.  (I'm the one in front of her).

 

 

I've grieved her mental passing for a number of years.  It's very hard, emotionally, to visit, and not very productive, since she is unaware of her surroundings.  If my presence does anything, it seems to disturb if I try to awaken her - she moans and makes unintelligible noises.  I can pretend that means she recognises me, but I really don't beleive it.  We have to accept at face value that this is all that remains of her.

 

Her nursing home is religious, with pictures of Jesus all over the place, with sheep and little children.  There are no pictures of Jesus with declining, debilitated, old people.  It is bright, sunny, the staff is attentive and cheerful.  I put her there.  It was her, and my dad's, first choice.  I think it was the right thing to do.

 

When the staff called yesterday, her oxygen level was 70%.  Normal is in the 90%'s, to 100%.  She was not responsive.  Although there is never much response anyway.  She was taken to the ER.  They did a chest Xray, showing pneumonia.  Over the past couple of months, she had an episode of colonic bleeding and has known breast cancer.  I elected not to treat those, due to no meaningful benefit, and possible pain and distress from evaluation and treatment.  This time, too, I debated.  I decided to tell them not to give antibiotic or fluids, but rather return her to the nursing home where they will treat for pain, if there are signs of distress.  The doctor agreed with this plan.  She probably would have recommended it, if I had asked.

 

She will probably die today.  Not much more to say.  The closure is needed.  You can't go back and say what wasn't said, or do what wasn't done, or ask "why" when it wasn't asked before, or say "I'm sorry" if it wasn't said.  I was probably over-protective in many ways, not wanting to distress her with some realities about life, and about me, that I thought would not be understood.  Overall she had a long, and good life. 

 

Peace.

 

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Comment by Sentient Biped on March 29, 2011 at 5:14am

Thanks again for the support.  As of now, we are on a "virtual wake".  She is not taking food or water.  There is no expression of pain or discomfort.  Since she's not taking anything by mouth, medications are stopped.  They have an IV in place for morphine.  Narcotics can also be placed in the cheek cavity or under the tongue if needed.  She's now on hospice, which means no further hospital trips.  They do supportive things like reposition her, bathe, and watch for signs of distress.  They worked with my dad last year, and it was the same staff, which is good.

 

I found out my workplace gives 5 days of bereavement - pretty generous in this day and age.  Interestingly, it needs to be approved in advance.   I wonder if they ever get forms filled out like "My spouse is planning to die next week...".  The manager was pertty defensive about it even though I made no comments.

 

I thought that I was very settled with this.  It's been a long long long process, and the dementia effects are brutal.  I admit I've hoped for closure.  Even so, I feel bad about it.  I know it's what many people have to go through, if we are lucky enough to have a parent live a long life.  I don't feel unfortunate, just bad.

 

I have not told coworkers, who are the people I'm around most in life, partly because I don't want intrusive condolence and conversation about it.  They'll know when I take the time off.  It's not that I don't want their prayers etc.  I don't want their prayers, of course.  I just want to deal in my own way.

Comment by SGA Atheist on March 29, 2011 at 12:56am

First my condolences.

 

I can only imagine what it was like to have to make those decisions you made, but it sounds like you thought hard to make the best decisions for your mother and make decisions that she would have supported had she been able to voice her opinions. It sounds like you have already started grieving for her. Hopefully in time you will obtain the closure you require.

Comment by Richard Haynes on March 28, 2011 at 8:58am
Be strong my friend.
Comment by Prog Rock Girl on March 27, 2011 at 6:29pm
My condolences. When the person does not at all resemble the person that you once knew, the mourning can happen before the person dies. I think at least care for a dying person has gotten a little more compassionate with things like hospice where the focus is on making the person comfortable during their last days/weeks/months...I think in earlier decades the medical establishment would mostly keep a person alive as long as possible.
Comment by Sentient Biped on March 27, 2011 at 5:21pm
Thanks to everyone for these wonderful comments. It means a lot. I just spoke to the hospice coordinator, and if she (or her body) survives to tomorrow she will be on hospice. This seems to be the modern, virtual, version of a wake.
Comment by Jedi Wanderer on March 27, 2011 at 4:14pm
I am sorry to hear about your mother and the pain you must be going through. You have my sympathies. I recently lost my grandmother to Alzheimer's, and it is a terrible disease.
Comment by Steve on March 27, 2011 at 1:43pm
My thoughts are with you and my heart is heavy for you. I hope you find solace soon.
Comment by Harry Meyer on March 27, 2011 at 11:56am

Dear SB,

My father passed last year at 83, he lived alone and was taking no medications and had not seen a doctor in many years. We thought he would like many more and that our mother would go first. She and he divorced many years ago, when they married she was Catholic and he Lutheran, she converted when I was little. I asked her about it because she had to go to classes in the evening so she could get confirmed as a Lutheran. She told me that the virgin mary came to her and told her that it would be good for the family. My father scoffed at this. After the divorce she decided to return to the Catholic church, when she told the Lutheran minister he told her that she would lose god. When she told me this I said that the preacher was wrong. She's now in a nursing home and calls me once a week to ask me to buy a house for her here. My mother cannot get out of her wheel chair and gets lost going to the lunch room. She says she's going to retire from there soon.

It sounds like your parents were a bit more stable, I'm sorry for your loss.

Take Care,

Harry

Comment by Andrew Seymour on March 27, 2011 at 11:33am
Dear Sentient Biped:

That is a heart-wrenching story. I am sorry that you have had to deal with this. It sounds like you have been holding off on telling her about your stance toward the idea of a god, which must be a huge challenge.

If anything, that 2nd to last sentence sounds like you fought with your heart at times to keep her at peace.

I wish you the best.

Regards,
Andy

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