Starting palliative care for my dad. And some ramblings

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My dad is 85 & has lived with us since March 2020-ironically he had a minor stroke right before Covid took over. Dad has had dementia for at least 6 years now. He also has balance issues and was diagnosed with Parkinson’s last year.

Since August we’ve had 8 falls where he actually hit the floor and several close calls. He went to rehab for a month and did well enough to come home. Hes getting home care and pt/ot services as well. In November he went from walking to in and out of alertness overnight. EMS took him to the hospital and he had a severe UTI and slight bronchitis and he got 8 days of IV antibiotics. Since the UTI he can’t void on his own so he now has a chronic catheter.

We had a palliative care consult and started him on low dose seroquel at night because he’s not sleeping well and he was getting up and wandering around the house- fortunately he has never left the house. (We also have cameras set up in strategic locations and as of Friday he has a bed alarm with a remote chime so he doesn’t have to get agitated by it).

Hes declining so fast these past few months. Palliative felt that he would actually qualify for hospice if he didn’t want to continue PT/OT, but Dad wants to. He still knows who my husband and I are, but often he doesn’t think we are at home and doesn’t know where he is. Hes been disoriented to time for a long time now, but tonight I took the dog (his) for a walk while my husband was in the same room with him watching TV- I was gone 45 minutes and after I came home dad was distraught about how long we were gone.

some days I wake up and hope he’s gone quietly in his sleep so he doesn’t have to struggle anymore. Then I’m relieved to an extent when he’s still here because I want him. And I feel guilty for hoping he passed on in his sleep. I know we are closer to the end than not. He’s weaker and using a wheelchair out in public for the most part now.

Mentally I’ve had more rough days than not lately. He was the one I went to when I had a problem as a kid. He was my best friend. He always fixed what was wrong (even if it meant I got in trouble later). And I can’t fix any of this. And I’m so mad at how unfair life can be. I’m the only child. My mom died 8 years ago from dementia. And I’m terrified that I will put my husband through all of this too. Moving him to a facility is not an option bc he doesn’t have Medicaid at this point and I won’t do that to him now anyway bc I think it would cause him too much anxiety. Since he came home from rehab he’s been very attached to me (and probably me to him too).

my husband is 100% in with me on this. He doesn’t have the same emotional attachment for obvious reasons but he does his best to be supportive to me and help with Dad. And I can’t ask for anything more. I’m blessed to have a spouse who no questions asked took in an in law for the long haul and has made multiple modifications to the house to keep him safe. He’s an absolute blessing to both me & dad.