Bedridden - Reality Check?

HusbandHasEO

I have checked in with questions a few times and wanted to provide a summary and get some feedback and ideas as I feel this board is full of so much helpful insight.

My husband has EOAD and is 56, now entering stage 7  - I think.  He has declined very rapidly the 2nd half of 2020 and now early 2021.

-May 2020, was still able to ride a bike, shower, dress, bathe, eat with some reminders/prompts and assistance.  Was happy!

-Became more and more agitated, anxious, obsessive behaviors.

-Nov 2020 - became more and more aggressive and agitated

-Dec 2020 - despite medications and adjustments, aggressive to the point of me calling 911 and him being admitted to hospital for review and medicine adjustments.

-End of Dec and Early January - pacing to the point of exhaustion, difficulty sitting, getting into bed and sleeping

-End of January - pacing but less steady on feet, trying to sit without any chair in sight

-Early February - continues to want to pace, but starts to fall, not too hard, because usually someone is near him at this point and trying to keep him up.  Requires Lift Assist to help get him up.

-By Feb 5th - no longer able to walk; using a gait belt can get to a portable toilet with significant effort and help

-DH still recognizes me and sometimes has periods of lucidity.  Talks and communicates, usually not making any sense.  Has been eating less, but fairly well.  Can feed himself finger foods.

-Hospice has been involved since January 12th.  

My question, does this seem typical?  Have I missed something?  My neuro and hospice say this is part of the disease progression...I feel like it is happening so fast, that I should be investigating further the cause...maybe I am denial...but I would love any input.  Hard to believe my husband is now bedridden...very difficult when he is still alert.  How horrible for him to not only have lost his cognitive skills, but now can't even walk or stand?

Should I be pushing for more answers, more investigation and see if the walking issue is driven by something else?  

Any advice and comparable experiences would be helpful.

Thanks so much!

dayn2nite2

For early onset, it doesn't sound out of the ordinary.  It moves faster.

There is also a possibility that there is something other than Alzheimer's at play here also, something like FTD or even Lewy Bodies.  What kind of testing was done when he was initially diagnosed?

If it is important to know what exactly was wrong here, you may want to arrange for a brain autopsy after death to get a definitive diagnosis.  That's the only way you'll know exactly what brain disease he has.

Lills

My DH has FTD/ALS.  Your DH's progression does mimic my DH's...albeit a bit faster than mine.  

March 2020:  Still walking but not steady on his feet. Hospice ordered hospital bed and lift chair (with gait belt).  Started using commode.  

June-August 2020:  Could walk from LR to kitchen with assistance.  Needed help getting up.  Used wheelchair outside and he could walk up 5 steps with much assistance.  

October 2020: All of a sudden could not use his legs anymore.  Bed bound with catheter.  Use hoyer lift to move him. 

Feb. 2021:  No change 

JJAz

This is similar to my husband's progression.  He had Alzheimer's and Lewy Body Dementia.  He was bed ridden for about 6 months before death.

Blessings,

Jamie

GMGYPSY

  In my husbands case  he was in stage 6 Alz when we got the diagnosis of Lymphoma. Since we were told he only had  6 months  hospice came in.   I was surprised to find dying from lymphoma is similar to stage 7 Alz.   6 months would have gotten him to end of March but after christmas his decline went at warp speed. 

   He became very agitated, often hallucinating  walking (like a zombie) into corners  unable to turn around, and pleading please please let me go.  He fell a few times, so I never let him walk alone  but when I'df help him he would say in an angry voice come on come on.  I realized he was talking to his own legs and feet. He was already very skinny but then he stopped eating and only drinking . He then became a skeleton. Those two weeks were torture for both of us, .   I finally found the proper combination of Morphine, Lorazapam and Haladol so he he became bedridden and was  able to  sleep peacefully for the better part of three days until he passed. 

  Sorry to be so long winded here but all of this happened in the span of three weeks. Now granted it took two fatal diseases  to kill him but it was very very fast.   I'm glad you have hospice it was a god send for me  and  for Jerry.   By the way my DH did not have early onset but he would only have been  4 years into his ALZ, in April 2021.  That was very fast too.

   Wishing you luck. 

Tross760

I am very sorry that this is progressing so quickly for your LO. I am in a similar boat. Mother was fully functional in October 2020 and then got a UTI which was treated, but kicked off a complete downward spiral. Since October she went from totally undiagnosed and independent (October) to now on hospice, can’t walk, barely eating, incontinent, puréed foods only as of a couple weeks ago (February). I have grappled and struggled to keep up with the almost weekly to daily changes in her status. I have read that this can happen, and apparently it is. I don’t know I can offer much advice, but you are not alone.

aod326

My DH has had a similar rate of progression, sometimes little change for 3 or 4 weeks, other times seeing changes on a daily basis. He is 60, although does not have AD, VD, LBD, FTD - unknown etiology.

Up to May of last year he was still running most days - admittedly getting lost a few times - and talking up a storm to everyone he came into contact with. I'll skip the interim stages, but he's now deep in Stage 7. Totally non-verbal. Two weeks ago he could at least "stand and pivot" from bed to wheelchair. Now he can't do that, and moving him even to turn/change him, is extremely difficult. He's eating and drinking good quantities, but all the liquids have to be thickened and fed via plastic syringe directly into his mouth, and all foods are pureed.

On Saturday he developed skin breakdown out of nowhere, which is now weeping. (Hospice nurse is coming today.)

So, sadly, while maybe not "normal", I don't think this is unusual in EO.

Sending positive thoughts your way - this is very difficult to be a part of.

feudman

dayn2nite2 wrote:

For early onset, it doesn't sound out of the ordinary.  It moves faster.

There is also a possibility that there is something other than Alzheimer's at play here also, something like FTD or even Lewy Bodies.  What kind of testing was done when he was initially diagnosed?

If it is important to know what exactly was wrong here, you may want to arrange for a brain autopsy after death to get a definitive diagnosis.  That's the only way you'll know exactly what brain disease he has.

I concur with the above, mainly because of his age & the behaviors you describe. What testing did they do at Byrd?

Every case is different, both the range of symptoms/behaviors and the progression rate, but I've been told time & again (by those in trenches) that the young ones progress faster.

 My FTD wife had a similar progression, but not as rapid. She went from non-stop walking to not being able to take a step in one day. It can happen that fast when it is a "neuro-disconnect" rather than physiological. Although I still get her up some days, hospice is now saying it may be better to keep her in bed (but then you have to keep a close eye on their skin). She's been non-verbal for years, and lately I get a suspicious look instead of the smile I used to get. Dysphagia is getting worse, food intake is zero some days,  so she is certainly in "the home stretch."

I'm so very sorry you are both going through this at your age. I hope you have help & are taking care of yourself. Best wishes.

CStrope

HusbandHas EO, can I ask when he was diagnosed??  I'm just starting the journey and find myself wanting to know as much as I can.

HusbandHasEO

CStrope - my husband was diagnosed in March 2016 at the age of 51.  At that time he was still driving and able to function pretty well in terms of daily living.  He had gone back to work after being home with a back injury and realized he could no longer perform his job.  There were signs 1 -2 years prior...in hindsight of course.

CStrope

Isn't it amazing when looking back all the signs that were there......

JudyMorrowMaloney

I am 6 years into this thing. My DH has FTD and it is progressing.  His delusions and hallucinations have gotten worse. I feel that 6 years is too long to suffer. I wish it would go faster so he can be set free of this awful disease.

French

 HusbandHasEO, I am interested in your feedback, indeed we are just following you.

My partner was diagnosed 2 years ago, he was 50 years old.

He is now stage 5, able to shower and dress but with an active supervision and prepared clothes.

No more able to write or set the table. Sometimes he doesn’t understand what I explained. His explanations are also quite difficult to understand because of sentence that are reduced to their minimum.

Cycling is ok but not in a city because he is not safe enough.

Last MMSE was 12.

Your husband progress seems to be very fast. It scares me when I think it could be the same here. I can see the advantage of always being one step ahead and anticipating. 

I sincerely hope you were ready to manage this.

Dreamer Lost

My Dh also has EOAD.  He is now 62, diagnosed at age 57.  He has been stage 7 for almost a year now with double incontinence. 2020 I think has been even harder on him than most with his decline.  He too went from walking, pacing to now only able to shuffle with a walker and assistance. He is unable to sit on his own, but I can get him out of bed, with aid and shuffle to the living room and into a recliner (sit to stand).  He stays there till I pull him up (with help) and shuffle back to bed.  Without assistance, Dh would be bed bound or I would have to use a hoyer lift.  Appetite still seems good but slightly declining. Must be hand fed and chewing and swallowing are taking longer.   I am so sorry for your Dh's decline but it doesn't sound unusual for EOAD.  Peace and Comfort with you.

HusbandHasEO

Update:  

Feb 13th:  DH is completely bedridden - can not get out of bed without a hoyer lift.  Double incontinent.

Thank goodness for the lift.  At least we can get him up and in a wheelchair for a part of each day.

During the last few days he has been more and more agitated.  Yells - "NOOOO" almost like a moan.  Hospice nurse told me before he doesn't know what is going on, so he is not suffering.  I don't believe that at all.   (He curses a lot too.  Something he never did before.)

I know all of you can understand.  I am just heart broken for him.  He enjoyed his life so much.  I know I will survive this, but my heart is broken for his loss.  

Thank you for listening.