Where to start. I'm new here and looking for support outside my spouse & friends who are exhausted by the conversation. In 2021 my father who was a severe alcoholic & smoker had cancer surgery on his throat & tongue. During the 12-hour surgery he had a stroke. Nothing has been the same since. My parents had me young, I'm 42, a working mom & wife. My (single) Dad is *only 64* & lives in a different state. I moved him from ICU to a skilled Nursing Rehab facility, to home care. I had a home-health company for 24hour care for the first year. It was $12K/month but necessary. After he was a bit more stable & done with radiation, last fall, I hired 2 private home health aides for combined 60 hrs/ week; hiring private cut costs in half, but he's still quickly running out of retirement funds to cover costs. (If anyone needs support on this process, I've learned a ton) The home health aides are working out well thankfully. He has now declined to the point where he is in his bed/bedroom 24hours/day. Only leaves his room (with help) a couple times per week.
My dad's status is this: As of right now, he's cancer free. Next check is end of April. He's had the same peg tube since surgery 2021, he refuses to eat by mouth. Except liquor & coffee. It is unclear if swallow issue is due to stroke or surgery or both. He can't walk unassisted and has refused all attempts at physical therapy. He has become so weak that getting to the toilet with his walker is about the only movement he gets all day. He often doesn't make it to toilet and is reliant on home health aid to assist in cleaning him up. He wears adult diapers but prefers to try to get to toilet. He weighs 125lbs, has some cognitive decline due to stroke & brain volume loss, but I've not got a definitive "dementia" diagnosis. He is reliant on me to maintain his world. Finances, home maintenance, home health payments & tax filings, setup Dr. appointments etc. I'm grateful I don't handle his daily care. We didn't have that type of relationship, nor am I equipped to do so. I travel to see him as often as possible in between my other responsibilities, but honestly, I harbor a bit of resentment that he's never even seen my home even when he was well(ish). Our relationship was nearly nonexistent prior to his stroke due to his alcoholism.
My question is this, how long can someone go on like this? He is miserable, essentially bedridden, can't eat, can barely speak, can't walk, most meds go through tube, he's incontinent. It's been nearly 2 years and sadly I want this over for him. Selfishly for me too. Lastly, I'll say this, he knows he's only 64, and refuses to go to an assisted living facility where I know his quality of life would improve.
Any support, similar experiences, stories of stroke patients, throat cancer survivors etc. welcome & appreciated.
Your own question to us is most complicated.
As an old retired RN I know as well as you know that this can go on for a long, long time. Especially since you describe your dad as cancer-free at this time. He is quite young. He is being well cared for.
I think that YOU and your dad's doctors would have the best guess for the whole person they are treating and who is known to them, but I would bet the latter are not going to be making a guess, even an educated one. Our brief snapshot of your would leave us guessing in the dark, complete as you have made it.
Some patients get a sudden sepsis and are gone in a week. Your Dad has already had one stroke; he may have others.
My own brother was diagnosed with probably early Lewy's and dreading a long life given our family's longeivity; he was terrified by the descent he saw ahead of him. Yet a teeny non-healing sore on his shin that he kept hidden took him in a week of sepsis.
II am so sorry for the pain of this ongoing debility, complicated by so many other issues, and for your pain standing witness to it. But I sure would be the last to hazard a guess about the future. For ANY patient. They will surprise you every time!
My friend, an RN, took it upon herself to keep her husband alive under similar conditions. She fed him through a feeding tube. There were infections, he aspirated several times and she rushed him to the hospital every time. I don't recall all the particulars. She was hell-bent on keeping him alive and she did - for almost three years. When he was in the hospital she'd stay there for days, tending to him herself.
But what if she hadn't? What if he'd died of one of those infections? Or from aspiration? She chose to treat those things. Maybe you wouldn't have to.
If I were you, I'd call hospice for a consult. They could certainly give you an idea of how long this could go on and what you should do next.
Is Dad ready to go? Because he does not seem to want to get better. I would say remove the feeding tube. If he can drink he can drink things like Ensure maybe even soft food. Place him on Hospice. Not sure if they will allow the feeding tube.
I am so sorry that your father has gone through all of this. It’s very sad.
My father had a stroke in the hospital after his heart surgery. Yeah, strokes change people’s lives for the worst.
I understand how difficult this is for you and I am so sorry for your pain. It’s very hard to see our parents decline.
I had addiction in my family as well, not with my parents but with my now deceased brother. Addiction truly is an awful disease. I’m so sorry that your dad is struggling.
Wishing you and your father peace as you continue on in this difficult time of your lives.