My husband has Parkinson’s with Lewy Body. What happens to him if I go into the hospital?
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.
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.
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.
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.
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.
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.
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.
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.
”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.
Wishing you the very best!
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.
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.
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.
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.
Good luck to you.