After the fall(1)

dayn2nite2

There were times when I would look at my mother and she didn't look like herself.  I can't put my finger on why, what I thought was that her "soul" had left the body for that short period of time.  I would look at her again a few minutes later and she was "herself" again.  Like the soul or her essence checked back in for a bit.  I watched intently but I was never able to discern when this change was occurring.  It only seemed to occur when I stopped looking at her and looked again.  In the times when I felt her soul was gone, she looked like a stranger to me.

JJAz

Jane,

I'm so sorry for your Mother's passing.  But at the same time, I'm relieved that her suffering and your suffering has ended.  You have been a good daughter, and bless you for that.

Jamie

King Boo

My condolences on the completion of your long journey.  Rest, sleep and recover.

Know the nice memories of your mother will return with ease one day.  These final days were hard, I know.  

Jane Smith

Thank you all for your kind wishes and caring messages. I appreciate the support more than I can express. 

On Sunday I didn’t think she seemed much different than Friday. The staff on Sunday had seen her during the week and on Saturday and didn’t notice a change either. If there were any signs of active dying, nobody noticed any of them.

So, while I wasn’t expected her to live much longer, I also wasn’t expecting her to die Monday morning?  I guess?

Yesterday morning my husband and I went to the facility where the hospice nurse, the unit nurse manager and the executive director all met me. I chose to see her, but asked the nurse manager to come in the room with me, and then I had a moment alone and said what I needed to say—nothing I hadn’t said these last two months, but it still felt important. 

A surprisingly nice person from the funeral home arrived and I stayed in the nurse manager’s office while they did their thing and took her away, because I did not care to see that. 

We went home and made some calls and I did the parts I had to do and then I went to work, to try to distract myself. Routine paperwork at work was an excellent distraction (it’s exacting enough to force me to pay attention, but nothing overly taxing).

Then I went home and got some carryout dinner with my husband and watched stupid television and went to bed. 

Today I had a very good day and was outdoors and spent time with people I love who care about me. I know that’s the short version but I’m so tired.  My husband is handling pretty much everything. I overheard some discussion going on with hospice about the death certificate* and I’ll tell you more about that later but I didn’t have to talk to them today. I had a day off!

*I want the death certificate to reflect her dementia. Apparently the hospice doctor wanted to put “arrhythmia” as the cause of death. She had a lot of medical issues in her life, but never any cardiac problems so what the heck?  I do realize that in the end we all die because our hearts stop beating but come on. 

Also I don’t want to upset anyone but a local academic medical center will perform a brain autopsy specifically to try to diagnose the type(s) of dementia present and I am having this done.  So I figured we would just wait for the autopsy results. There’s no hurry for the death certificate in terms of finances or anything.   But maybe I’m crazy. 

Thank you all and more later.

Quilting brings calm

Jane.   First I’m sorry for the loss of your mother.  People here say we lose our PWD twice.  While they are going thru this disease and again at death.  It’s a hard way to lose a parent. 

My parents are still here. My in laws are gone ( non dementia).  In terms of looking different beforehand  / I saw my FIL two days before he died.  He was having difficulties  breathing that day, hut he had severe emphysema so that was not unusual.  The day he died, he wax in the ER and was sent home  with a monitor.  Highly unusual in 2999.  The doctors obviously knew.  He died in his sleep, 

I hadn’t seen my MIL for a couple weeks when she died. She was fine then,  she wasn’t expected to die,  no real issues other than being 87.   My BIL saw her the day before she died.  He had signed her up that day for shower help and medication management as she told him she could no longer manage either.  The nurse said  she was tired and somewhat confused ( unusual for her)  that morning, but seemed fine when he saw her in the afternoon. She died in her sleep.  The funeral home waited for us all to get there before they came for her.  First time I had ever seen a body other than at a funeral or visitation.   Very odd feeling to gaze upon her that way. 

M1

Jane I am sorry for your loss but am glad her suffering is over.  Peace and rest, you did a good job taking very good care of her.

harshedbuzz

I am sorry for your loss. You have been a strong and loving advocate for your mom in some challenging situations: I wish you some peace and calm now that your task is done.

To answer a question you posted earlier- yes, just before my dad passed he was physically transformed in ways that were difficult to articulate. Sure, he'd lost weight and his facial affect had become flatter as the disease progressed, but this was different. He was almost unrecognizable from a few days prior, had I not known him it might have been difficult to even be certain whether he was a man or a woman. Cognitively, he was about the same. Dad's dementia robbed him of the ability to swallow and digest food at a time when he was still weirdly conversant and semi-ambulatory. I was so spooked by his appearance, my husband suggested I touch base with my mother and uncle to loop them in on the change. Both promised to visit the next day. Dad died later that night after a brief period of what might have been terminal agitation.

His PCP at the facility called my mom a few days later to consult on his cause of death. They opted for Alzheimer's as primary cause with aspiration pneumonia and Wernicke-Korsakoff's as underlying contributing factors.

HB

aod326

I'm so sorry that your mum has passed on. It's been an especially difficult few months for you. My DH died on a Wednesday in April. When our hospice nurse saw him on the Monday she said, although she's never been able to put her finger on exactly what it is, she always notices when one day the patient looks different and she knows death is imminent. By Sunday evening I felt he'd gone - his facial expression changed and he was really just a shell until he died at 1.05pm on Wednesday. (11 weeks today.)

I also had a brain autopsy for DH, at a teaching hospital where he'd been receiving treatment. His journey started with seizures in 2015, aged 55, and he was diagnosed with dementia in January 2020. The expectation was that some unusual degenerative disease would be found upon autopsy. I wanted to know the diagnosis partly because the whole thing had been a mystery that confounded multiple neurologists. Also to understand whether whatever it was was hereditary, for his two children. The results of the autopsy showed "high Alzheimer's", plus Lewy bodies. Other than that he was a fit and healthy 60 year old.

Take care of yourself over the next days and weeks. My experience has been that grief comes in waves. However much you may feel you grieved for your mum because of each and every loss, it's very different (for me at least) once the person has gone.

Jane Smith

Thank you all for your kind messages of support and condolences you’ve sent. I can’t begin to tell you how much it means to me. 

There have been a lot of ups and downs and conflicting emotions and I’m sure there will be more.

Thank you for listening and making me feel I’m not alone.

Jane Smith

I could not recall if I had thanked people for their kind messages, but I think I did?

It doesn’t hurt to say thank you again. 

It is all very strange.