My husband has Parkinson’s with Lewy Body. What happens to him if I go into the hospital?

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.

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.

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.

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.

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.

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.

My husband had Parkinson's too, though not with Lewy Body so his judgement, memory, etc. remained intact. No incontinence, and he had no tremors and could eat without making a mess. However, he needed assistance with bathing and dressing and walked with a rollator. He passed away from a stroke before we had to face the decision about having him go into a facility, but he and I definitely discussed it. I second the recommendations about making sure you have emergency information readily available. However, I disagree that your husband necessarily needs placement in a facility right now. If you can afford it, I would suggest having home health aides several days a week so that all the burden isn't on you and you can get out of the house. Of course if you are totally worn out and can't cope any more, that would certainly be a valid reason to have your husband placed in a facility. And I would recommend hiring aides from an agency, so if you have an emergency yourself you'll be able to get people in on short notice while you recover. That would buy you some time to decide if your husband needs to go into a facility. If hiring from an agency, one of the things to make sure to ask them is if they have 24 our coverage and if they can get people in on short notice in an emergency. We had home health aides for three 4-hour shifts per week, and they were great. We really lucked out and had people who were wonderful with my husband and who also liked to keep busy so they cleaned, did laundry, and did some cooking.

Penquina
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.

Find respite care in a Skilled Nursing Facilities - They Offer respite care short term . Get a social worker involved to hep you through your Primary care Physician.

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.

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.

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.

i personally know what your going through . Been there done that. This may seem harsh. It’s time to place your husband in care. I was fortunate to have St John of God Parkinson Rehab inform him this was his last resource left. I nursed him at home without any assistance for 10 years many falls ,ambulances you know the drill. He has been in care for 20mths now and it’s like his own village. He is happy well feed and professional nursing 24hr a day. I have sat with him recently for 24 hrs on Palliative Care after a TIA and a fall that broke his neck and gouged out one side of his face and a hematoma he made it through and I am so grateful for the wonderful care he received at Homestyle Care. So my Darling it’s time to stop and think about you for a change. Our seasons are coming to and end and over the last year I grabbed it by the throat and ran. Took a holiday to QLD and Vietnam/Cambodia. Take Care.

Good question to be considering.
Confer with his physician about what your husband's " level of care needs assessment" is; this will be a starting point to begin the conversation with him and your family about long term plans both for his care and yours. You may greatly benefit from conferring with your PCP as well and , an Elder Law Attorney and, a Geriatric Care Specialist to get overall advice, options etc for your husband's care and your own.

Start gathering a caregiving group for him - and maybe your future self. Ask for volunteer help from family, friends, members of faith community... Then consider "filling in the gaps" with paid helpers - home health care aides/agency and sitters. If you need emergency help and you do not have help for your husband, he will likely end up in the hospital as well. If you are unable to care for him, he most likely will be placed into skilled care facility.

As I said during worst Covid, before vaccines and treatments, I asked Social Worker what if I catch it and end up in hospital?
Emergencies often happens at night, it is harder to arrange facility. I live in Canada, they assured me they would take my husband to hospital as well, provide bed for a night and contact SW in the morning.
I am healthy, but one never knows.
That is why I have backup or plan B, few people will stay with him, plan C if facility is hard to find there are several private ones, we budgeted for those emergencies.

My mom had Parkinson’s disease. As you know, this is a progressive disease that becomes more challenging as time goes by.

Sooner or later, you will not be able to care for him on your own. Most facilities will tell you that it is best to place someone in a facility before it becomes an emergency to do so.

I feel for you, I know how it feels not to be able to do things at the drop of a hat. Or to be anxious about if something happens unexpectedly.

I went into the hospital with an asthma attack and stayed for a week. I had to have alternative care for my mom.

Wishing you and your husband all the best.

Penguina: Find respite care posthaste.

I’m so sorry to hear your legitimate concern's. Your health seems to be jeopardized due to you taking on all the responsibilities of your husband. If at all possible financially and emotionally place your husband in skilled nursing facility ASAP. Then start taking care of yourself, so you can be there for your husband. Your worth more to him healthy then sick or even passed. The common phrase we don’t do is put your mask on first so you may save others.
Good luck to you.

Evamar's response is totally correct in our area too. My husband also has PD with PD related dementia and I know the Lewy Body dementia is on a higher level. I became totally freaked out by COVID, wondering what if. I was told the same thing... if EMS came, they would not leave him alone. He would be transported with me and they would try to connect with our emergency contacts to make arrangements. I had not considered involving a social worker, but Evamar is correct in a hospital social worker is the most likely person who would become involved at that time. If our family is not equipped to step up at that time, the social worker should help find other placement for him. It just occurred to me I need to tell my sons should this happen, they should not immediately take their father home but insist the social worker help arrange any resources they need at that time. The social worker has all the connections to help get the support started. Once my husband is released, I am sure it will be much harder for our sons to make those connections. If he is a veteran, start checking now, if you have not already, to see if he qualifies for any type of benefits especially in an emergency. We have caregivers provided by the VA for 28 hours a week which would help, not the answer but it is already in place to hopefully build on in an emergency.