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Is 84 years young. Has Central sleep apnea with cheyney-stokes respiration and idiopathatic polyperipheral neuropathy and mild, chronic cerebral small vessel ischemic disease. Is 7 month decline considered quick decline or somewhat normal? Anyone have experience about the progression in similar circumstances?

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There really is no rhyme or reason to the rate at which someone progresses 'downward' with their health. I mean, there's a pattern of sorts, but overall, every day is a new day.

I have watched my mom stay stable for a while, then I'll visit and notice she can't remember names, or keep track of the time frame. Only b/c I DON'T see her very often are these apparent to me.

Talk to the doc in charge and ask them what their take is. Everybody is their own 'animal'..and will progress at their own rate.
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Judycares Sep 2021
Thank you for your kind response. Intellectually, I know everyone's journey is different. But that's hard for me to internalize. I so badly want to be on top of things.

We see his neurologist next week to review his latest brain MRI. We should know more then.
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When he was using a can should he have been using a walker? Canes are no good if both legs are bad. With neuropathy nerves are being damaged so if the damage is ongoing then yes, he may not be able to walk after 7 months.
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My mom had vascular dementia................for about 5 years she had balance issues, multiple falls. She insisted on walking only with the support of a cane, though it was awful as she was so unstable............I urged her to get a wheelchair, or even use the walker.................she refused, and told me that I was not being "encouraging" to her that she was walking with the cane.

In April 2020, she fell again, at home. This time she became bedridden, unable to stand on her own and incontinent. I called EMT then, they got her up to the bed, but were afraid to bring her to the ER because it was at the height of Covid.

But she just lay across the bed for about 2 days...............hardly drinking and pushing my hand away if I tried to offer her something to eat.

I had had it.........just watching her lie there, getting dehydrated and not knowing why she could no longer even get up, so one morning I went into her room furious and frantic................I said I have to call an ambulance..........we have to know why you can no longer even get up.

Long story short..........she slipped out of bed to the floor.............I called EMT..........she was dehydrated, etc. At the hospital they diagnosed her with vascular dementia, decreased blood flow to the brain...........and now unable to walk and incontinent, also said UTI.

It was at the time Cuomo was ordering people out of hospitals to SNF's and the palliative care nurse made an awful mistake, so apologetic, that my mother was not eligible for hospice...........no terminal disease............I called back to complain and the nurses were so apologetic, and said that the nurse didn't haven't time to properly evaluate my mom, that it was more than "normal aging" but a terminal diagnosis.

The next thing I knew, my cousin texted me that they had moved her out of the hospital into a SNF for "rehab". I had to go to the veterinarian that morning, so was gone a short time before I could read this text.......................but my mom was already moved to the SNF........I had to go down and sign papers, but she was already there! How awful...................even a doctor at the hospital told me that he could not imagine what kind of rehab the snf could offer a 94 year old woman, vascular dementia, now unable to stand/walk and totally incontinent.

There was alot of isolation, and I begged them to let her out.....it was against my wishes, I had POA and Medical Proxy............but they refused to let her out...........they used up all her medicare days.............she did not improve............and next time she had to go into a nursing home it was private pay. Thankfully, I was able to take her out earlier, and get her on home hospice.........she was in the nursing home for a few days short of a month. Thankfully I got a partial refund on the private pay nursing home.................astronomical pricing and I couldn't wait to get her out, even though I would have to change diapers, feed her (she hardly ate), dress her. I watched her deteriorate........PT at the nursing homes was a joke............really not funny.........a way of making money for a for profit awful nursing home............I watched my mom become delusional, have hallucinations, illusions......I changed diapers, hospice came about once a week......they provided diapers and ointments to try to act as a barrier cream.........a few meds.........but better than the snf.....at least hospice knew this woman was dying and was not going to improve.

She was diagnosed with vascular dementia first in April 2020, at the start of this horror show............decreased blood flow to the brain...........probably multiple TIA's but no major stroke on CT of head I believe........I have a background in medicine.........I wonder what an MRI would have shown........then possibly mixed dementia, vascular and Alzheimer's.......who knows and it really didn't make a difference at that point.

A long painful story.................
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Judycares Sep 2021
What a painful and long journey you had. I hope you have since found some peace.

Husband was diagnosed with central sleep apnea w/cheyney stokes, nearly 4 years ago. It's rare. He wears a ventilator every night. (Totally different from sleep apnea). He sometimes has 4 or 5 episodes nightly where he stops breathing. Ventilator is computerized and kicks in when it senses he's not breathing. I'm no doc, but my sense is that those episodes contribute to lack of oxygen to his brain and has some connection recent MRI findings of vascular dementia (yes, same as small vessel ischemic disease). Will see his neurologist next week but already have reviewed latest radiologists findings and assessment.
I pray his journey does not follow your mother's.
I so appreciate you sharing your story. God Bless
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Another note...........my mom probably had mainly vascular dementia, with cerebral ischemia..........affecting first I would think, white matter, with problems walking, balance issues.....but also gray matter.........confusion, apathy. Multiple falls, and had to find a seat right away if I took her out, as she wanted.

Progression...............about 5-6 years.......first walking and balance problems..........falls...for years........in the last year of her life, actually a bit less than a year.........bedridden, incontinent, delusions. It was hell to watch and try to do what I could.....facilities didn't help much.........I thought the idea of "rehab" was ridiciduous............ and so much isolation because of covid. I changed diapers when finally got out of the first snf........took her out of al with an enhanced license, but overwhelmed when developed C diff one night, she could no longer feed herself or dress herself for close to a year before death..........and I could not keep up with diaper changing and keeping things clean and became hysterical one night........called 911.

Towards the end she thought my name was her name..........last 2 days, unable to roll over in the hospital bed, developed bruising over bony prominences..........hospice tried to put dressings on, mom didn't say more than a few words a day and made no sense I could find......couldn't swallow or even open her mouth. Last 2 days, seemed out of it, I looked at her, breathing looked labored.........gave morphine and ativan..........when I looked again she wasn't breathing at all, and I could find no pulse. I called hospice and the nurse pronounced her officially dead.

Vascular dementia is slow and insidious........................function declining over years, and in the last year (a few days short of a year), death after being bedridden and incontinent during that last time frame.

I hope that you and your mom don't go through all these tragedies................perhaps earlier hospice or a hospice facility.......it's hard for me to say as I don't know the details............I just know that it was almost impossible to get my mom into an inpatient hospice facility, and she died on home hospice.

I pray you have some solace, support and don't go through this like my mother and I did................as for me, I think that a quick death, or death during sleep is kind..............these long illnesses, with increasing dysfunction, till almost nothing if left but agony are the worst.
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When you say chronic small vessel ischemic disease.........of brain I think you mean..........it it vascular dementia?, what is the diagnosis?.............I don't know if really has Cheyne Stokes respiration now, as that is usually toward the end, and it seems your loved one, has only mild chronic cerebral ischemia, so we're not at the end it sounds...............but progressive motor dysfunction?.............do they feel it is due to chronic cerebral ischemia and vascular dementia..........it's so hard to give thoughts online when we don't have all the information..........we're in cyber space..................but please know, my best wishes and hopes for some peace and solace for your loved one and you...........prayers.
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