Heylo! Newbie Here! | Caregiver Action Network

Heylo! Newbie Here!

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Heylo! Newbie Here!

Hello everyone. Definitely a newbie here to official caregiving. I cared for my mother when she was sick with cancer eight years ago. Then a little with my grandmother and grandfather before they passed. But now this is hitting me hard with my father. 

For the past six months I've been halfway caring for my father. This biggest issue is his weight. At the time this all started, he was over 550 lbs. Back in November he hurt his knee. He went into the hospital due to fluid and 'poison' build up on it and had to have antibiotics given 3 times daily. He was in there for a month. When he came home in December, I had to care for him every eight hours. Really took it out of me and my ability to do my two jobs. But, we lived through it. He was bedridden, still able to move around and all, but couldn't get up and go for a walk. 

What started his downhill decline I think was that the home health services didn't come out for almost a month (no fault of their own, they all got covid). He pretty much stayed in bed. I tried to get him up when I could, but he was stubborn and didn't want to. One day I pushed and got him to sit up. He scared me when he blacked out. Come to find out it was low blood pressure (and due to the fact that he had stayed laying down for a long time). 

Good thing was he was able to take care of himself. We would just help with a pad and diapers and he could clean and wipe himself down. I'd make sure he had his meds and was fed, but pretty much he was good. Home health care finally came and he was doing light PT and the nurse would come out every two weeks to make sure his vitals were good. 

Then came an issue which I still don't know anything about. He started not being able to keep food down. First it started with certain foods being unappetizing and he'd gag/throw up at the smell. Then it became where he couldn't keep pretty much anything down. I could barely get pudding, some cereal, ensures, and a few other small stuff to stay down. It got worse as time went on. We took him to the ER back at the end of March for a week and they did every test possible. Still couldn't figure it out. They sent him home.

Well he still couldn't keep anything down, got to the point even water couldn't stay down. Went back to the ER and he was in there for a week and a half. They said they changed some meds and he was able to start eating again... never really was confirmed. 

Then came the scary part. They sent him home and when he got home it looked like he had a stroke. We sent him back to the ER and because of his size, they couldn't do an MRI. It took a week until he was finallly able to be coherent enough to remember things from day to day. I told doctor after doctor that I swore he had a stroke and finally one listened, sent him to another hospital for an MRI. 

That's when the doctors stopped talking to me. I got no response from anyone for the next week. Only the nurses would tell me anything, and at that it wasn't much. I'm still frustrated by it. I'm working on getting his medical records because I still don't know much. He still blacks out sitting up. He's having memory and mental issues. His arms are out of control (he flails them around constantly). And now he can't move pretty much at all in bed. 

I work two full time jobs along with helping my dad's business (now my brother taking over it). We were talking about getting him into a rehab nursing facility. Next thing I know, they're sending him to a boarding home that medical won't cover. They want $6000 up front for each month, wanting me to pay for two months. My family cannot afford that at all. They didn't this while waiting for a nursing facility (not even a rehab one) to accept him because of his size.

So... here's where I am now. I had to get him home because I cannot afford the boarding home. I've pretty much had to go on an extended absence from one job. I have a housemate that can help a little here and there when I'm working. Otherwise, it's pretty much just me. I can't move him every few hours like he needs, only when the housemate is home in the mornings and at night. I'm happy he's finally eating though. That's the silver lining. But as for everything else, it's been really hard. The bed is broken and the company is taking forever to get a new bed. I have a jerry rigged system to lift the head of the bed up. He's also having memory/mental problems still. He keeps arguing with me that's there's people in his room, that there's dogs on the bed, all that. 

I've only been at this for about a week now and I'm already worn down. I'm stressing about keeping the house I've grown up in, about his hospital bills (everything before April is not covered by medical/insurance), helping my brother keep the business going, and doing all this care pretty much by myself. I'm trying to do my hardest to make sure he gets the care he needs, but with his size I cannot move him. And while my heart wants him to stay home and be happy... my head is telling me there is no way I can deal with this until he gets better, if ever...

Long read, I know. But needed to vent. I am looking into different services and all that. It's been a heck of a week so far. Thank goodness my best friend found this site for me. I already have been getting help from it. I'm mainly here looking for advice if anyone is in my same situation. 

Thank you all so much.


Difficult care

Hi Jessica, 

So much to take on and by all means vent...you need to. First of all it sounds like you just  "took" responsibilty by degree as I did with my only sib (Brother) then my Father and now Mom (she's 96 now) so at 67 myself now I can only tell you to get any and all help you can. The issues with your father will no doubt become overwhelming and too much for anyone to handle without help.  My Brother had an aggresive Cancer so he quickly was beyond home care, my Dad was on dialysis 4x a week and when he broke his hip I was caring for both Mom and Dad but after a year I reached out to Hospice (again, and they accepted both my Brother and Father) and as difficult as it was I don't regret it...the support they gave was as much for me as them and I needed support more than I knew.