He can manage most activity. He uses a walker but “stutter steps” and crashes into door frames and furniture. He has constant tremors and eating/drinking are very messy and time consuming, but I want him to keep trying while he can so I do not force my help on him. He has limited bowel and bladder control with frequent accidents. He loses track of time, days, and can no longer write, though he still reads some on his phone. He messes with his phone so much that it becomes unusable. We take the phone back to the provider to reset or replace. He loses things, like keys. I found his car keys in a kitchen drawer even though he hasn’t driven in a year or more. It’s 24/7 care and I’m getting very worn out. My health issues are getting worse with hbp and diabetes. If I have to go into the hospital he has no one.

It's long past the time when husband should have been placed in care, for all the reasons you describe. You are asking a serious question about a serious matter, and it's a good thing you've asked. Now you will be getting good advice, and I hope you take it.

Start looking for places where he will be comfortable. Visit them. You'll find some that are better than others. Talk to a social worker (care facilities may connect you with some) who can help you determine if you have enough money for private pay, and if you don't, the social worker will inform you and help you with resources to provide you both with care.

Husband doesn't seem to be in the shape to decide anything about this situation. It's all up to you. Get started now before an event occurs to either of you that will call for a fast decision to be made. It's harder to make those decisions when we're already in the hospital and under duress.

I'm very sorry for your problems, but once you've started the process, found help, and made decisions, you'll feel a whole lot better. Good luck.
Helpful Answer (12)
Reply to Fawnby

You need emergency information with you in your wallet/purse at all times so that EMS, Hospital ER know. They contact Social Services if it's the same as when I was a practicing RN. In some cases we actually hospitalized the spouse briefly; in other's social workers were able to manage with other family. The important thing is that the information needs to be EASILY managed.

This information also belongs in glove compartment of care (and even pets that will be alone at home must be mentioned) and in your purse, pockets. I may leave the home without my ID, wallet, phone, but I NEVER leave without an emergency information card that I am a Kaiser Patient, name, contact, meds and any chronic things (for me, atrial fib). Otherwise, my going "down in the street" means that EMS arriving on the scene will assume the A-fib did it and begin shocking me to no avail.

This is something we should ALL be aware of, but especially those of us of an age. I have seen both a cyclist and a motorcyclist go down in my area with no accessible ID. Not good.
Take care. You are wise to think these things out.
Helpful Answer (11)
Reply to AlvaDeer
Penguina Dec 10, 2023
Excellent advice. I carry an ICE card, In Case of Emergency, but I need to expand the info to cover his needs and our service dog as well.
Thank you to all who responded. Great advice and a new perspective for me. I’m so close to it all I don’t even remember all that has happened just this year. It all started with seizures - up to a dozen grand mal a day. Three back surgeries. A brain bleed. Two bouts of MRSA. Dozens of falls, bruises, and bumps. 22 weeks in three hospitals. His primary care Dr is amazed he has survived thus far. So dealing with tremors and Rollator demolition derby are minor compared to what he has been thru. At least now he dresses and bathes himself and can get around without a wheelchair. To see the situation thru others eyes is very helpful. I am pursuing placement for him as I already inquired about in home care and our area is very under served. I do have him in palliative care now so that cuts out all the trips to Dr appointments. Any other suggestions or comments are greatly appreciated. Take care.
Helpful Answer (11)
Reply to Penguina
MeDolly Dec 15, 2023
Keep moving forward, I am glad that you are pursuing placement.

Wishing you the very best!
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I don't want to sound mean but I think you're in great denial about your husband when you state in your first sentence that your husband "can manage most activity" yet you go on to say that he stutter steps, crashes into door frames and furniture, has constant tremors, makes messes when eating or drinking, is incontinent both ways, loses track of time, messes up his phone, and loses the car keys.
So what activities exactly can he still manage?
When someone's full-time care starts to take its toll on the caregiver's health it is time to reevaluate the situation and look for other alternatives for all involved.
And for you that may look like hiring some full-time help to come in and help you and your husband so you get some much needed breaks, or it may look like finding the appropriate facility for your husband where he will receive the 24/7 care he requires and you can get back to just being his wife and advocate and not his caregiver.
You do not want to be in the statistic of 40% of caregivers dying before their loved one with dementia does do you? So please do what you know must be done to prevent that from happening.
Helpful Answer (10)
Reply to funkygrandma59
Penguina Dec 10, 2023
😕Wow. Talk about being slapped silly. I look back at what I wrote and see how ignorant I sound. I said he manages most things because he still bathes and dresses himself, still goes to the bathroom by himself but wears a diaper at night with some accidents during the day if he doesn’t get to the bathroom fast enough, he moves around the house unassisted but he does misjudge doorways and furniture with the Rollator. He has the freezing and stutter steps common to PD but he is still mobile - an improvement from the wheelchair I was told he would never get out of. Is it his fantasy world? Should I encourage him in trying to remain as independent as possible for as long as he can?
I know I am fighting to make his current condition acceptable because it is actually an improvement.
He was in a facility for 3 months and they did zero rehab with him leaving him laying in bed 24/7 not even getting up to use the bathroom, not bathing him, he lost 40 pounds, he deteriorated terribly before my eyes so I pulled him out of the place. Thus my hesitancy about putting him in a facility again.
I am mourning the loss of the smartest person I ever met.
Thank you to everyone who took the time to give me such valuable feedback. You showed me love and understanding that only those who have been there can do. I’m crying now because I know you are all right. My first step is to get him into PT while I consult an elder law attorney and a social worker to start the process of placing him in a care facility.
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If he’s having all these issues, he is not “managing most activity”.

You can’t keep this up. At this rate you’ll die before he does. You need full-time care at home or a facility.
Helpful Answer (8)
Reply to LoopyLoo

I am sorry to say he is way beyond doing "Most Activities Himself". You are living his fantasy.

Please look into placing him before you burn out completely, don't do this to yourself. Accept the truth and move forward.

Sending support your way.
Helpful Answer (8)
Reply to MeDolly

My husband has Parkinson as well but no dementia and still fairly independent, dressing, meds, no incontinence ever, yet uses walker mostly, does not have falls but I am well aware how Parkinson’s disease progresses. Don’t know much about Lewy body except it progresses faster.
During Covid I asked SW what if I needed to go to hospital?
They would take him as well and provide facility. Right now as plan B I have few people who would stay with him at home for a day or longer, before he can go to respite facility.
He is great with planning, has everything arranged just in case. There are private one which will arrange everything fairly quickly.
I can honestly tell you Parkinson is cruel enough, and I am more of supporting wife than caregiver.
But I get all sorts of help, with exercise as he does treadmill and bike few times a week, respite, day programs.
Yet, I know if dementia happens I will not be able to deal with that as he would require more care.
As most care providers suggest people with PD do better at home, maintaining independence is important as even small accomplishments increase dopamine naturally, facility don’t always administer meds on time, which is the most important so I understand most people are reluctant to place somebody especially spouses. Yet, I know as well as my husband who is totally agreeable to going to facility, in fact if dementia happens he would not want me to be responsible for him 24/7, even if we have several caregivers.
Helpful Answer (7)
Reply to Evamar
Fawnby Dec 11, 2023
That’s wonderful that your husband is prepared for eventualities! It gives peace of mind.

”During Covid” concerns me, though. We are still “during Covid.” I know two people who are in the hospital being treated for it right now.
Oh boy, you have been through the mill and the reboot you have given him will be helpful when he returns to facility care.

You will find that being an advocate for your husband and keeping yourself healthy is the best contribution you can make at this stage of both your lives.

I have watched my cousin, now 60, spend several years caring for her mom with PD & LBD. Plenty of money, LTC insurance and still such a challenge. The caregiver spouse, my uncle, was the primary until strokes, kidney disease and ultimately dementia took over and cousin had the two to manage. All the prep one can do is no match when this stage of aging enters the arena. I’m not sure cousin will ever recover.

As you have seen, just by being in a facility doesn’t remove the requirement of an advocate. For yourself and for DH.

Wishing you lots of luck with a certified Elder Care Attorney. Hoping you find someone appropriate to put on your call list and payroll. It is a great comfort to know you have help lined up when you need it.

Let us know how things are going. We care.
Helpful Answer (6)
Reply to 97yroldmom

Find a caregiver to come in a few days a week. You need help and this added stress can contribute to you having health issues. I wanted to keep my husband home as long as I could but it got to be too much for me. My blood pressure was sky high he was constantly needing supervision. He would fall almost daily, and being on a blood thinner he would bleed everywhere. I felt like I was living two lives and for my own health, I decided it was time to place him in a facility. I’ve been taking care of my husband since 2010 when he had multiple brain aneurysms at 58. Please get some help.
Helpful Answer (5)
Reply to Mlewis1156
Di1961 Feb 4, 2024
The ideal thing would be to find Respite care for him.
This is great if the Hospital trip is a planned one but not so much so if it is an emergency.
1) Is your husband a Veteran? If so the VA can provide some help and may be able to provide Respite if needed. (And the VA is now paying spouses to care for the Veteran so you may be able to be compensated for the work you do)
2) Is there a local Senior Service Center that you can contact to see if he and you qualify for any help in the way of caregivers?
3) Is he eligible for Hospice? If so the patients on Hospice are able to be placed in Respite care covered by Medicare, Medicaid and other insurance. And with Hospice you would have the ability to ask for a Volunteer that can come in 1 time a week and give you a break.
4) Are there any Adult Day Programs in your area? If so that would give you a break a few days a week. Most will pick up in the morning, provide a snack, a lunch, activities and will bring the participant back home at the end of the day.
Helpful Answer (4)
Reply to Grandma1954

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