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My dad is 83 and I am caring for him full-time while I work also from his home.


History: Before 12/27/2023 my dad was living independently, driving, shopping, and living his life with my stepmom.


On 12/27 he went to his routine doctor's appt and because of water weight gain, he had to go to the hospital for treatment to lose 30lbs of water weight. This takes 2-3 days. That turned into 2 weeks. The nurses/doctors never got him out of bed. Therefore, he was ordered to rehab. He lasted 5 days in rehab before we found out he was being abused and ended up with a stage 3 pressure ulcer. So back to the hospital. The second rehab was wonderful but it was short term and he ended up back in the hospital because his bladder was not draining completely.


I made the decision to bring him home where I am currently caring for him.


Note: Days before I brought him home his wife took her life.


Dad has OT and PT 2 to 3 times a week. He can get up with assistance but has no desire to do this outside of therapy. I have tired.


He does have a catheter (thank goodness) but refuses to use the commode outside therapy. I have to clean him up between 3 to 5 times a day.


I know I need help but what kind of help? My husband comes to give me some time away but my dad just waits for my return to do anything, like eat, drink, put lotion on his back, etc.


If I hire someone he just will lay here and save it all for me. So how can I relax being away knowing I am going to walk into a "sh*t storm".


Finances are not an issue, but I am just going to be paying someone to sit here and do nothing because my dad will just watch TV and sleep during that time.


I did get him a button he can press that chimes in the bedroom at night and that works well for us but I spend the majority of the night just wondering when he will push the button.


Talking to the nurse, my dad is "healthy" for his baseline. He is in palliative care for heart failure and stage 3 kidney failure. But otherwise, he is fine and can live like this for maybe years?


As much as I hate complaining, I do have to be able to live with myself with any decisions I make too.

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I'm so very sorry for this tragic situation. I don't see any way you can sustain keeping dad in your home and working too. In no way am I suggesting that you stop working! You most certainly should not. You need to and deserve to support yourself.

I can't know why his wife took her life, but as a wife to someone who needs 24/7 care, and caring for my 4th family dementia member, I certainly understand how it could become overwhelming to a spouse. And how they'd rather exit this life than care for someone on your dad's level of need. It's a serious mental health issue for caregivers.

It's also something you should think about. You MUST take care of yourself. On an airplane, it's called putting on your oxygen mask before you help others. The best thing for you, dad and your husband would be placement of dad. That isn't letting him down in any way. That's getting him help by professionals who know what they're doing. You're understandably lost, as you indicated in your post. All caregivers are in the beginning (and at the end as well). You're capable of learning as you go, you're doing that. But there's so much to learn, so much you don't know, so much you shouldn't do (like clean up your own dad's poop). It's okay to admit you're in over your head.

As for living with your decisions, how can you live with your dad only having nonprofessional care? And don't even think about home health care. That means a troupe of people in and out at all hours, and it's seldom manageable for any length of time (I've done it - no thanks). Go look at some skilled nursing facilities and find one that you like. Everything he'll need will be right there. You'll heave a sigh of relief, knowing that you did the best you could.
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Have the doctors run a Toxicology/Heavy Metal screen blood test. Why I am mentioning this has to do with your Dad's wife taking her own life. Makes me wonder if she was trying to do him harm and it became too overwhelming for her. Just a thought. Then Doctors can work from there.
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What needs to happen is that you absolutely and consistently refuse to perform the tasks that the aid is hired for.

You also tell him that if he doesn't do his in-home PT or get up and walk and cooperate with the aid, and doesn't use the commode on his own at night then you will transition him back into a facility. But don't make any threats you aren't willing and able to carry out.

Maybe consider finding a male aid, who will also funciton as a companion for him?

Also realize that resistance, stubbornness, laziness and lack of empathy for others (like you) are early signs of dementia. Has he ever had his cognition and memory tested (and you were privy to the results)? If not, this should happen -- and also be a condition to staying in your home.
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In my own opinion your father needs to be placed in LTC. Your putting your own life on this funeral pyre as sacrifice will not help your father and will not help you; as you yourself observe, this may be ongoing for a good many years.

Only you can make this decision for yourself. I would be honest with my father, were it me, and tell him I am not capable of caring for him. I would help him finding best placement he can given his very fragile condition.
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I don't think your Dad will last for years. 30lbs of water weight is a lot. This means his heart is not pumping well enough for the water to leave the body. And he has kidney failure on top of that. May not be able to use dialysis because of his heart failure.

You need to set boundaries. Tell Dad you cannot do it all for him, you need help. Me, I would not have done the intimate things u do for Dad and I am sure my Dad would have gotten to that point if he had lived. I told my brothers long ago, I would not physically care for Dad. He would need to go to a NH or one of them care for him.
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Starrann69 Mar 15, 2024
Since being home and having a catheter he has gone from 295 to 230lbs. No water weight or swelling at all.
Note: My dad is also 6'3-6'4

I know I know I need help but is it the kind of help I need? I can leave him for a few hours alone because I know he can't get up from bed and is fine with me leaving to run his errands.

PT, OT, nurse, and an aide come throughout the week so the only time we don't have someone coming into the home is on the weekends.

I am on Care.com but I have not pulled the trigger yet again, I don't know what I need or what to even ask of someone.
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