Rapid decline, drs recommend placement - I am still gRabbing at straws….

[OllieWeaver]

Hello everyone - I only just joined the forum but my OHs situation is changing so quickly I could use some insights. I posted earlier with details…

Thank you @canary, @northumbrian_k , @ladyboxer and @2ndAlto. I am learning to take the days as they come and savor the “better” ones. At some point the tsunami will recede and I will rebuild with the pieces that are left, hard tho as it may seem. It’s been a long journey for OH… after 2 years of a multitude of physical symptoms, Parkinson’s diagnosis in early 2023, upgraded to atypical Parkinson’s January 2024 (possible corticobasal syndrome), with a very fast onset of major loss of cognitive abilities within the past 6 months. Within the past two weeks a neuropsychological evaluation indicates it could also be lewey body based on executive function loss and last week a PET scan reading pointed to Alzheimer’s! At this point I’m not sure how it could get worse. so steeling myself for the difficult end long run. Yesterday was a very bad pacing and paranoia day for OH. This past night however he slept very well, so fingers crossed today might be better. I’ve been lurking and reading through the forums and see how so many are working so hard to keep their loved ones safe and comfortable. Lots of good information to plan ahead and give me courage.

in the week or so that has passed my oh was admitted to hospital because his paranoia became such that he was breaking out if the house And trying to run away. His regular specialists are now saying that we should “focus on quality of life” which I take as doing things to extend his life will not help him. and I agree. The hospital doctors (emergency room, hospitalist) indicated so far they are skeptical his paranoia can be properly managed and that a care setting placement needs to be considered. I am devastated. But I also recognize how quickly he is declining, literally week by week, and how much care I give him now, constantly increasing. I also see that the decline is both cognitive and physical. It’s just going to get worse. My friends and even his family members point all of this out to me that him staying at home is not sustainable.

i Know that each case is different, but I see posts from people who have held on to their loved ones at home for years. what Factors have caused you to decide that it was time to let go and place your loved one in care? Obviously safety, ever increasing resources needed, etc…, I am grabbing at straws to find solutions to keep my oh In the home that he loves…. I could get 24 hr in home care but they might not even be able to mange him…

 

[SAP]

The thing with dementia is there isn’t a one size fits all scenario. Some people with dementia do not get paranoid or aggressive or any of the other reasons that a person may need hospitalisation. Others display all of this and more. Safety, both your and your OH are paramount and if medical people are suggesting that they cannot give your OH treatment to ensure he is safe at home then you have to think about what is in his best interests . You are right that 24 hour care may not work and will in fact be eye wateringly expensive as you will probably have to pay for 2:1 care. I can understand that you want him home but if he is in residential care he will be safer than at home when it comes to his paranoia behaviour and frankly so will you.

 

[Kevinl]

I think deep down you know the answer and it's yes, sorry but I think you know that already.
Hard part then is moving on, home alone isn't what I ever expected after over 10 years on this site.
Alzheimer's may have taken my partner and maybe I'm just the one left with PTSD, or whatever, putting someone in care isn't a failure, the only person you're failing to care for is yourself.
Don't ever think you've let them down. K

 

[canary]

I absolutely agree with kevin

May I also say, @OllieWeaver , that giving someone the care they need, even at the expense of your own feelings, isnt failure - it is an act of love.
💙

 

[Violet Jane]

Not too many people manage to look after their PWD at home right until the end. In some cases the PWD is taken by something else before the end of the dementia journey. It depends on many factors, in particular, whether the PWD has very challenging behaviour and whether the primary carer has a lot of hands-on support from family members and paid carers. There's a gendered aspect to this as well. A large man with poor mobility will be more difficult for his wife to care for in the latter stages than a small woman by her husband.

 

[Kevinl]

Did iit for mum and wife pretty much solo, ended up with my mum as the brains of the opetation wife did as she was, directed. We worked solo as on no outside help until I became ill , system kicked in for me and it worked.
I appreciate that health care varies according to location both nationally and internationally, all I can say is it works for me around here for me. . K

 

[OllieWeaver]

Thank you everyone, @Kevinl, @Violet Jane, @canary , @SAP For your wise words. The last week was full of hopes and dashed hopes. “ new beginnings are often disguised as painful endings” (Lao Tsu) and so I accept to submit to the bulldozers of life and will find a different way to care for my OH in a new setting. Quite ****** journey getting there and through it tho.

 

[canary]

The last week was full of hopes and dashed hopes. “ new beginnings are often disguised as painful endings” (Lao Tsu) and so I accept to submit to the bulldozers of life and will find a different way to care for my OH in a new setting. Quite ****** journey getting there and through it tho.

Of course it is hard. It will take time for you both to adjust.

Your head knows that it is for the best, but your heart hasnt yet caught up
xx