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LuvrOfCmasMusic Asked August 2021

Well I've moved from caregiver to advocate. DH spent a week in hospital with severe uti/prostatitus. Any advice?

He's in rehab facility now and thanks to this group I know not to allow him to come home. I was told there will be a Care Plan mtg. soon. My question is should I expect staff use this mtg. to push me to bring him home instead of placing him in a memory care facility? The social workers are looking for a Medi-Cal bed but they're not easy to find in my area...the reason I'm posting my question. They'd be absolved of this task if I would take him home.


I just can't handle him anymore and his bowel incontinence isn't improving any time soon so we'd have this 911/hospital/rehab senerio again and again. I've done all I can for him.

BarbBrooklyn Aug 2021
Yes, they may push for him to come home.

And no, you shouldn't accept that.

Tell them that there is no way that you can safely care for him any longer. If they threaten you with "he'll become a ward of the state" say "I guess that's what will have to be, then".

Do you have a lawyer?
LuvrOfCmasMusic Aug 2021
No lawyer yet but it may be necessary. Thanks for your suggestions...they are helping to ease my mind a bit.
WearyJean Aug 2021
I placed my husband in a Memory Care facility yesterday and I expected to feel relief; instead I felt overwhelming grief and starting crying as soon as I got to the parking lot. I couldn't stop crying for hours. This morning I woke up with heaviness of heart and was reminded of the advice that author Elizabeth Elliott gave when feeling overwhelmed, "Do the next thing." The next thing after reading the good advice in this thread answering your question is "get dressed". Then I'll go on from there, doing the next "next thing". I'm praying for you, LovrofCmasmusic. Let's sing "Silent Night" together.
Beatty Aug 2021
Grief is very very normal.
(((Hugs to you)))

I didn't realise until you typed it how close the word grief looks to relief.

Grief: intense sorrow
Relief : a feeling of reassurance and relaxation following release from anxiety or distress

May relief come in time.

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BarbBrooklyn Aug 2021
Nydil, some (unscrupulous) placed will threaten families with that (ward of the state).

It has been my experience that you have to call their bluff by saying "okay, if that's what has to be".

LuvrOfCmasMusic Aug 2021
I was surprised to hear from a Home Healthcare placement specialist. He will be giving me suggestions for group homes tomorrow. This will give him time to find a long term medi-cal bed.
Have to pay for a few months but VA will reimburse through one of their programs. (Can't remember the name.) Little did DH know his time in Vietnam would help him 50 years later. I just wish he knew or remembered that now.
I'm not doing very well now. Actually feeling more depressed than when he was home. Crying a lot. Plus am so exhausted even though I have been sleeping better. Just not prepared at all even though I've known this was coming for at least 5 years. I've heard of anticipatory grief and that's involved I'm sure.
Grandma1954 Aug 2021
Don't know if it will help now but see if you can get paid for caring for him.
Have they told you the "classification" or "%" of his disability? If you are unsure please look into it they will rate from 0 to 100% the higher the % the more he and you can qualify for.
He will be cared for.
Many of the VA sites have housing find out if the one near you has one. Some are VERY nice and recently built so it is worth looking into if he qualifies. (has to have a certain % disability)

(also for yourself please look into his % as that can mean a reduction of your property taxes as well)
Momheal1 Aug 2021
So sorry for all you have been through. I’m glad he is somewhere safe and you can breathe a little.

When we landed at rehab it was all new to me and mom was stroke recovery so some things were different.

I would think that at the case meeting they will either have assessed him (therapies - medical needs etc) or discuss the plan of when all his assessments will take place.
Due to the UTI (which he may still be being treated for) I would push for all therapies right now to even buy you time and give him a chance at getting a little stronger.

Im unsure if you tell them right away at meeting one (it probably depends on if they already assessed him and come at you with quick discharge). Maybe someone has better experience in that - I do not. I know how to push through getting more out of rehab but not on how it works in finding him a placement.

I do remember pushing forward to make sure moms UTI was cleared so that she could actually participate in the therapy at her best vs them attempting to base her “goals” on someone who still was recovering from an infection.

As others have said on here before - you can say that you are no longer to care for him in a safe environment so that they can begin finding placement.

You can say in the meeting that in his current condition you are unable to provide that level of care but want to see if he is capable of participating in the therapies to see he recovers any strengths and not give them a solid commitment. Maybe this gives them time to start looking for a bed and you a little time to just process and gather all the ifs.
But do not let them tell you he is being released home when you do not feel you are able to care at his level.

I know I had to call Medicare and report an unsafe discharge that provided me time to get all the equipment needed to bring my mom home - it freezes everything for 24/48 hours and you only have to call the Medicare hotline - put in his info and a Medicare rep will reach out to you and freezes the place from making you leave.

I’m o my saying that in case you feel backed into a corner as some places are really willing to help and some are not - so you can use that hotline number if you needed to.

Prayers that they find him a place close to you and where you feel they are better equipped to care for him.

Beatty Aug 2021
That 2nd paragraph says it all. Perfectly. State that at the Care Meeting.

Stepping into the unknown is definately hard but you can be proud of your success already - "From Caregiver to Advocate". To me that says :
Strong, Caring, Purposeful.

Adjustment & change take energy. Be kind & gentle to yourself through this time.
Isthisrealyreal Aug 2021
Perfectly stated!
ACaringDaughter Aug 2021
Social workers are very helpful with placement and will not usually push anyone toward home care, especially in situations involving the dangers of memory loss.

Give yourself permission to accept this new role, life change and relief.

dlcottrell Aug 2021
Pursue your options with the VA. As a Vietnam vet he can get room and board covered at facilities who accept VA benefits. Most counties have VA offices that can help you apply or you can go through disabled American vets. You can also go online and enroll him in the VA medical system which wasn’t too difficult. Is it time to start hospice? This will give you some more help and will cover all the medical equipment.
drooney Sep 2021
The VA is a good payer, and most facilities like that! Homecare is difficult and some aides not always reliable. At least a nursing home has 24/7 staff, even if understaffed, there is someone there all the time. Not all nursing homes are negligent or lacking in caring staff!
Sadinroanokeva Aug 2021
In Virginia..I said we can NOT care for Mom at home. I have back injuries and can not lift. My brother refused to take her to his home again. IF we had enough money to pay the $6000 a month bill they said they would allow mom to go to Memory Care..Mom had savings… she was in Memory care for 10 months and now Assisted Living at $5000 per month..{mom has Lewy Body Dementia and is in a good mental place right now}…Good Luck

Taarna Aug 2021
Be firm in letting the staff at the planning meeting know that he can not come home. They will continue to find him placement.

We were in a similar predicament. A good friend's brother needed a place to stay while he went through chemo for leukemia. Unbeknown to us, he also had a severe pill-popping habit and untreated mental illness. When he developed a high fever, I took him to the ER. He was admitted. I reminded the staff that he did not have a (our) home when he was ready for discharge. He found other accommodations with help of social work.

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