In 2020, my dad caught COVID, ended up on a vent and was unable to walk once he came off it. He moved to a nursing home and regained most of his cognitive function to the extent that I was sending him to events on his own (by wheelchair taxi) this past December (2022).
In early January, dad spiked a fever and was taken to the hospital with an infection that was found to be related to a UTI and a kidney stone. He was then put blood thinners that caused him to develop a massive hematoma.
This set off a series of additional issues and infections including multiple rounds of sepsis, complex UTIs, and blood clots. With every infection and hospitalization, dad's mentation took a hit (he is also incredibly sensitive to antibiotics which have always disoriented him).
I live out of town but spent 3 weeks at his bedside last month as he is currently unable to swallow, speak, or move his arms.
He is now on hospitalization #5 of 2023 (this one began with pneumonia). I've had to change his code from Full to DNR, against his wishes, because every doctor has told me that CPR would (painfully) kill him and he'd never be able to be extabated.
My dad has a strong will to live and basically is 22 years old in his head. We are incredibly close and this is absolutely destroying me. More than that, I want to do right by him. His close family and friends and I all agreed that so long as he was "in there" we would keep fighting alongside him because that is what he has stated he'd want.
I'm starting to wonder if there isn't a more compassionate option. The problem is...what he's dealing with isn't cancer or something causing him pain which could be aleviated by comfort care/hospice.
He isn't really in pain but he's basically choking on his own mucus. The hospital has been trying everything to break it up but he can't swallow. Plus the nursing home director won't allow (even trained) staff to deep suction him. So if we send him back he's basically going to either continue to be sent to the hospital or end up choking which sounds cruel and painful.
Has anyone found themselves in this situation? My dad is literally my favorite person and seeing him struggle like this is horrible.
I’m a retired and trained speech/language therapist with no formal training in assessing or treating swallowing disorders, but I knew that every time I was at her residence she’d indicate that she was thirsty, and when I’d serve her a drink of juice or ensure she’d drink it quickly and comfortably.
At the same time, she was loaded with mucus and wound sometimes choke on it, unrelated to whether she’d been drinking or not.
After a few days of this she was placed on thickened fluids, which she typically refused.
I requested a swallowing evaluation, and almost immediately she was taken off the thickened fluid regime and returned to the juices and “milk shakes” she enjoyed.
If a swallowing study hasn’t been attempted would you feel it might be useful to request one?
And know that just because you get hospice involved it doesn't mean that he will be dying any time soon. Only God knows the day and the time when He will call him home.
My late husband was under hospice care in our home for the last 22 months of his life and like your dad had a strong will to live. I was told several times over those 22 months that my husband wasn't going to be here much longer and each time he proved them wrong.
Even when it was very apparent the he in fact was dying, hospice told me he would be dead in 3 days, and my husband lasted 41 days.
My husband too had swallowing issues which lead to him developing aspiration pneumonia and almost killed him(before going under hospice care)where he developed sepsis and septic shock.
Because of that his quality of life after that was gone and he became completely bedridden until his death in 2020.
Hospice prescribed the scopolamine patches(one behind each ear)and also the Atropine drops that I had to put under my husbands tongue to help with his horrible lung congestion near the end of my husbands life.
I'm sorry that you're facing this difficult time with your dad, but it sounds like it's now time to do what is best for him and no one else.
How blessed you are to have had a great dad. Not all of us have been so fortunate.
Please enjoy whatever time you have left with him and leave nothing left unsaid.
Hospice will keep dad comfortable while his body does as it will. Have you had him evaluated? Choking on mucous can definitely be uncomfortable and hospice has medications available to dry up those secretions, like Scopolamine, that work to a degree.
Its a terrible thing to witness a loved one going thru such a thing, so my heart hurts for you. Please do as Zippy suggests asap to ease your mind a bit. God bless you and help you both thru a difficult time.
Has anyone suggested palliative care for your Dad ?
It’s an option when they don’t qualify for hospice. Also for my sister , hospice they stopped all meds except for comfort . I think She got better because of getting some meds out of her system, like anesthesia , from 2 bronchoscopies to clear the mucous plugs in her bronchials sedatives from brief intubations etc. which caused delirium . Because she became more alert and able to swallow she came off hospice and put on palliative care . They added back her normal supportive meds . Like blood pressure meds etc and gave her food but were not going to do any major testing or procedures or anything . She ended up going to rehab , which they thought would lead to nursing home placement but she worked really hard in PT so she is home for now.
Your Dad could be placed in long term care nursing home on palliative care . I don’t understand why they can’t deep suction at nursing home .
She is furious with them, but it was that or a NH. She opted for the 'least awful' b/c she wants to stay home.
She doesn't have any one thing that is slowly killing her--except for being 92.
At some point, comfort care is all you can really do. My MIL is miserable, but absolutely terrified to die. She had an 'incident' yesterday, fell while being bathed by her aide. It set off her fall pendant and DH and SIL both got calls. DH ignored his (yes, I set him right that he HAS to at least acknowledge that he got the call) SIL raced up to MIL's home and the CNA didn't re-set the pendant nor talk to the company to tell them that she was OK. This whole scenario is just a steep learning curve.
MIL qualified for Hospice, which in her case, right now, is more Palliative care. But I can see that she is very rapidly going downhill. At least she is allowing caregivers in her home, though she hates them all.
Minimally, have your dad assessed for Hospice and see what they can offer. You may find that it's a good fit, for this point in time. People do bounce in and out of Hospice, it's not a death sentence.
Good Luck.
Wishing you peace as you continue on in your caregiving journey.