Long time lurker and first time posting. I take care of my 85-year-old husband who is bedridden by his own choice. More on that later. I am 57 years old and been taking care of him 24/7 since March 2023 over a year and I am mentally and physically exhausted. We have no children together. He has two and I have one. His kids are absolutely zero help. One has various medical problems and can't help the other just never calls or comes around. My own child helps more than his ever did with getting his prescriptions, etc.
Hubby has pacemaker, diabetes, and neuropathy in his feet also a Charcot foot. He used to drive, we went places, took vacations. He even lived alone before we married. He did well by himself. He is still sharp other than the usual forgetfulness with aging, he's all there UNLESS there's an infection such as UTI then he is confused. I feel guilty when he does go in the hospital, I get a break. It feels like a vacation to me. We've had home health in the past, but they discharge him. His PCP sends out his PA every 3 months for a checkup. They do everything they would do in an office visit. I asked the PA in Jan if they had someone who can come bath him and she said "Ummm home health doesn't do that maybe hospice. I'll check on that." I hadn't heard anything and 2 weeks later I called, and they said it was pending. I never heard anything about it. They don't care how you're doing at all.
March 2023, he went into the hospital, and he always refuses physical therapy in there so when he comes home, they send out PT and he will be gung ho for a few times then doesn't want them back out anymore. The last couple times he was released from the hospital he is back up and started walking again. This time he did not, and I don't have the energy to help him anymore. It's like he figured out why walk when I can be waited on. He flips and flops in the bed like a fish out of water, can toss and turn and sits up on the side of his hospital bed almost every day. I must wait on him constantly. I do everything for him but feed him. Empty the urinal multiple times a day, the bedpan, clean him up and take care of that, manage medications, meals, bathing in bed. Nothing we haven't seen here before, I do it. Bring me this and that. "I'm hungry you're going to have to make me this or that." I want to scream. Plus take care of 2 dogs and a cat. My sleep can be interrupted anytime of the day or night if he needs the bed pan. I'm on edge all the time waiting for the next crisis although it's been over a year since he's been in the hospital, but it will happen again.
As for me, I have depression and anxiety inherited from my dad's side. I've been on medication for over 20 years. For the last year I have been seeing an online psychiatrist (Cerebral) and they're not worth a dime but it's all I have right now. My hair is falling out, I'm distant, isolate myself, never leave the house, and sleep as much as I can, barely shower, weight gain and I look in the mirror and I'm not the same person I was a year ago. Things are rough here. The same routine every single day.
He seems to think he will go into a NH when he can no longer move in bed and has dementia, etc. He has an 89 yr. old brother who is still going strong but is not bedridden. This could go on for years. I will be dead by then.
Some of the common road blocks on the path that get mentioned;
Family.
The 'Family Helps Family' motto. You have already seen this, looming large. I would include here any daughters/sons that don't want to see their Dad in a 'home'. Why? Because it causes them to have uncomfortable feelings. OK. These adults can feel how they feel. But sons & daughters NEVER have any power to insist a spouse provides the care. No-one does. Not family. Not hospital staff. No-one. Ever. Not even the spouse. No-one.
Family can help family - within reasonable limits.
Family can help family - but need to stop if this causes harm.
Family can help family - in many ways. It never needs to be a solo job, only with their own hands. Arranging extra help, some or full 24/7 care - in the private home or in a care facility.
Bring any judgemental comments back to focus on the topic of CARE.
Financials.
Finding professional advice here is key. Sometimes we just don't know all the rules, the conditions, the options. There may be an option we didn't know about.
Keep going. You are doing great!!
Where I am from, WV is that family takes care of family til death no matter the cost to everyone else. I have seen it over and over. My mother and her siblings did with their mother, father, the list goes on. That's just the way it is here and I'm not about it. A facility is a bad, bad, mean horrible place.
I just told him we need help. He's onboard and isn't against it and he wouldn't fight it. Tells me he appreciates everything I do, he couldn't make it without me, blah, blah. I feel it's just manipulation tbh. He's lived his life and it's not my fault he waited years and years to come back into my life. He made his choice over 40 years ago and it wasn't me. We have a history but it's not relevant. He was and is the love of my life.
The last time he was in the hospital I told them I wasn't able to take him home and care for him because every time he goes in there he is unable to move in the bed, has a catheter. They were making arrangements to place him and actually found one. He has to get on Medicaid, and I was told we had to have less than 3k in the bank and I had to get all his personal property out of his name. They were wanting him out of there. He had been there for about 14 days. Sighs, I should have went through with it but brought him home. Go ahead, roast me for doing it. I deserve it. I felt overwhelmed.
Fast forward to this year, I inherited a sum of money from my Aunt when she passed last year. So, we do have more than 3k in the bank and he has personal property and mineral rights he receives a check for quarterly.
I am going to try having aides come in and see how that goes. If that's not working for me then I am going to have to find a facility. I did speak with Humana his medicare insurance and they pay for a lot of stuff.
You're getting good advice here, and I hope it will open you to alternatives to your present situation.
One thing you said: "I feel so guilty about a facility. It's like one of us has to be unhappy for the other to be happy." Let's look at this.
You're assuming that husband would be unhappy in a facility. In reality, he's not going to be happy anywhere. He's very sick. His health is declining (partly because he won't do what he needs to do to get stronger). It's a bad situation for both of you. I believe you need to look at it in a different way because your thought that one of you has to be unhappy for the other to be happy is a burden that you've put on yourself. You're also assuming that if he's unhappy in a facility, YOU will be happy. That's not true either.
What is true is that if he's in a facility (and there are many fine ones), he will have professional care, which you can't provide. And you will have a weight lifted from you so that you can begin to heal from the trauma that his illness has brought upon you. It is NOT okay for him to order you about like a slave. It is NOT okay for him to have no concern for your wellbeing.
Almost all of us will go into a care facility when we can no longer move in bed and have dementia, so don't let him manipulate your emotions with that. Guilt about getting him professional care in a facility is not necessary! For all we know, he might thrive there.
I hope you can break away from your assumptions and embark upon a new plan, both for his sake and for yours.
My internet was out all day and it's connected to the stupid phone so I couldn't call anyone. I live in a rural area so no cell service it uses wifi so I have to find cell service.
This is not my first rodeo being a caregiver. In 2018 my 1st husband was diagnosed with a very rare terminal cancer. He was just 52 and it turned our world upside down. Again, I had no help from anyone. We lived 7 hours away from family and he refused to let anyone know just how serious it was.
I watched a healthy man die right before my eyes and there wasn't a damn thing I could do about it but try my best to make him comfortable. Surgeries, harsh chemo, radiation, a tube in his lung to drain fluid for 3-4 months, MANY ER visits, hospitals stays and he died in May 2019 less than a year after diagnosis. This is the first time I've really talked about it. It's painful and still brings back bad memories.
My life was turned upside down I lost my husband of 32 years and had to sell our home that we lived in for 28 years and move 7 hours back to the place I grew up and left at 19 years old. This is the short version. I had to start a new life and suddenly a widow. I've healed but the scars will be with me forever.
At least he could get around and do for himself until the last month.
Hope you can find a more sustainable path forward! 😊
Knance maybe be talking about "in home" when mentioning a CNA because in that instance you maybe provided with items mentioned but only if they can get them thru Medicare. A agency CNA or one hired privately will not supply you with these things.
It maybe time to place your husband. Talk to an Elder lawyer about how you can protect your half of the marital assets. Call Office of Aging for resourses.
You say you have been on the site watching for some time, so you understand you are not alone.
I will just observe to you that any guilt you feel when he is in hospital is inappropriate. Guilt requires responsibility for causing and a refusal to fix. You didn't cause diabetes. You cannot fix it. You are feeling RELIEF when he is gone. Which would be called normal.
You must know about diabetes after all these years, and you understand that living to 85 with this disease is in and of itself somewhat miraculous.
I am one who disagrees with using Hospice for anything other than what it was created for, which is end of life care.
You sound to be approaching that time when you will have to honestly tell your husband that you have done your best, are exhausted, and cannot go on with 24/7 care. You do not have the help of family (which is, frankly more common than not). Allow yourself to "go there" in thought; even consider seeking a good cognitive therapist to work out your thoughts, to comb out the options, to come to eventual choices.
Your daily live sounds to me quite unimaginable; I could not do 24/7 care, and always knew I could not. I would not have attempted it. I am so very sorry for all you are enduring together.
You are young, too young to be dealing with this situation. There is no guilt to be associated with him being taken care of by others trained to do that.
I am very sorry about this, time to start taking care of you and becoming his wife again not 24/7 caregiver.
57 is too young to be ground down to a pulp. I think he has more cognitive impairment than you realize. Dementia slowly robs people of their ability to use reason and logic, and affects the part of their brain where empathy resides. This may be why he seemingly doesn't care and isn't grateful for what you are going through (and that it will continue, to your detriment).
Who is his PoA? I hope it's you. If it is you, then I would now work to get a medical diagnosis from his doctor in order to activate your authority (or the authority of whoever is his PoA). If it's one of his kids, this may be problematic. If it's you, then you have a lot of options. Read the document and start doing what is required to activate the authority.
Who is his PoA? If he doesn't have one at all, then this needs to happen before he declines further. And, it needs to be you if you are going to be his primary caregiver (and because you are young enough to manage it all).
If he refuses to assign a PoA, then you inform him that you will use his funds to pursue legal guardianship in court, or you will call in social workers who will recommend legal guardianship to a judge, who will then assign a 3rd party guardian and neither you nor his kids will have any more say in his affairs. This is not an idle threat. When someone declines into incapacity then *someone* has to legally be able to make decisions and perform management for them. The last option is a court-assigned guardian. We had to do this for my SFIL when he refused to assign a PoA when he had Parkinsons. Then he developed Lewy Body dementia and we had to give it over to social services. They placed him in a facility. So, there is ultimately an option but the sooner you work on it, the more control you may have.
If you/your husband has the financial resources, hire in-home aids and go take a vacation. It does not matter that he won't like it. If it were me I may not even tell him, just tell him some people are coming to give me a break. Don't tell him for how long. He cannot relate/doesn't care how burnt out you are, so you need to be your own advocate and #1 priority. No one is going to rescue you. You need to do it, asap. An extended break.
May you receive clarity, wisdom and peace in your heart as you take care of your own self.
The only solutions I see are these:
1. Have a talk with husband and tell him everything you said in this post. Tell him you are exhausted, stressed, burnt out and can't keep this pace of caring for him up any longer.
2. He needs to either start doing his PT and getting mobile again (with a time line for this) OR he needs to pay to have caregivers come in (if he can afford it) OR he needs to be moved into a facility.
3. You need to stop jumping at his every beck and call. While that will help you some it won't stop the constant need to clean him multiple times a day and giving him bed baths, etc. That's why he needs to get his proverbial s--t together and get mobile or to the nursing home he goes.
My heart breaks for you in this difficult situation. I am so sorry. You can’t continue this life or you will end up sick yourself.
You are already dealing with anxiety and depression.
What do you mean by saying that home health doesn’t give baths? Did I read that correctly?
Mom’s doctor ordered home health a couple of times and we absolutely had an aide that helped mom shower. So, check into that again.
Of course, you feel like you are on vacation when your husband is in the hospital.
Anyone would be exhausted in your position. Erase your guilt and replace it with saying that you’re worthy of a better life for yourself.
Have you contacted Council on Aging in your area?
Start there and get a ‘needs assessment’ on your husband. Tell them that you can no longer continue to care for him. See what options are available for help.
Your husband needs to be placed in a facility. Then, you can care for him as his advocate, rather than doing the brutal hands on work.
Wishing you peace as you work on finding a solution to this situation.
I feel so guilty about a facility. It's like one of us has to be unhappy for the other to be happy. If he had dementia and had no idea who I was, where he was it would be easier.
I am going to call the Council on Aging and see what they can do for me and go from there.
He says things like "I'm sorry to be such a burden" or "I'm sorry to be such trouble." I just don't think he understands how hard it is. I've told him several times I am not well right now. I feel horrible and he says he's been worried and always asks me if I'm ok, if I'm happy. I don't talk much. I'm like....really? You know I stay with you 24/7, I have no friends, I sleep all the time, losing my hair like a chemo patient, not had a hair cut in over a year and you ask me if I'm ok but that said, he is the sweetest man. He never says a mean word to me.
At the end of the day, I am no longer a wife, but a caregiver.
Take time to re-read over what you wrote. Take time to think.
Sending support your way.
Vent. Vent. &.. think..
Vent & think about change..?