Written before, when in crisis over caretaking of my 94 year old dad. Told after home that hospital testing was a FALSE negative for cdiff recurrence! Since then he has been and is currently being treated for two separate UTI recurrences. We are in a cycle here of continuous UTIs. (there are varied opinions about cause). I’ll just suffice it to say that in addition to his symptomatic (cognitive and fatigue) UTIs and cdiff there is CKD, heart issues, mobility issues and he is labeled a serious fall risk, macular to the point that his eyesight is very diminished, hearing issues even with hearing aids, emphysema (but not on oxygen), thyroid issues, and is immunocompromised. He is somewhat incontinent for bowel. He has not been diagnosed with dementia.
Over the past year, he has survived health crises that no one thought he would! He is resilient. Remarkably, he still performs ADLs with some help, and cleaning up of bathroom mishaps. (Of course, I do all cooking, cleaning, laundry, meds, doctor and financial stuff)
So here is my situation: He is obviously declining. ADLs abilities are declining, cognition spotty, sleeping most of the time, mobility issues increasing alarmingly (may be due to UTI). With having to be on constant antibiotics (and they currently are not eradicating the UTIs, just keeping from sepsis—doctor meeting about this this week), another cdiff recurrence could, and likely will, happen anytime. One of my concerns (aside from being concerned FOR him), is that as he weakens, his ability to cooperate in containing cdiff problems will be greatly diminished. I am told by the care management person that we have retained, that no in-home care help will be available with cdiff. I have severe osteoporosis of the spine, and am limited in providing care if he becomes less mobile.
After dad spoke out his dissatisfaction with life to his new PCP, and said that he didn’t fear death, just pain, his PCP took me aside and recommended hospice recently. I explained to the doc that my dad has spoken that way for years, and most likely is not looking for any action to be taken (this is true about most things as he “vents”). I consulted with the care manager, and she does not think we are there yet. However, dad has been talking more and more about curtailing meds, tired of doctors, etc…..
Even if hospice isn’t appropriate now, I have to face the fact that his health problems are spiraling and it may soon be. He is more and more refusing to go to the ER, etc. His PCP said to me “I know I would rather die at home than in the hospital”. I’m sure my dad would feel the same way if asked. But am I up for that? It looks like his care will always be just me if he stays in our house. I don’t think I can handle what could be in store here. And I know that is selfish. Frankly, I am struggling with this. AND, I have no way of knowing for sure what tomorrow will bring….But I think I should face my limitations. And with everything riding on me, if I get sick there will be no one to take care of dad and emergency SNF placement could be worse than a well thought out and chosen placement…AND my husband also deserves to be my priority at this point.
So, does it sound like it is time to place dad NOW? Wait until the next health crisis? (Which well may be cdiff, and then no SNF will likely take him)Should I consult an elder care attorney about Medicaide first (he has enough to probably self pay for a year or so, maybe less given that he would have to switch to straight Medicaire and have to pay the 20% it doesn’t). Can you even get in to a good facility without going from hospital? Any suggestions will be valued, just please don’t comment about how contagious/awful cdiff is—I know and have been freaked out about it for over a year.
Ask his doctors how to achieve what he needs. Tell them you think he needs hospice or palliative/ comfort care and that you can no longer manage him at home. Ask what the options are.
I wish you all peace.
You will have to tell Dad that he needs more care than you can provide.
Hospice can be added as well.
Wishing you the best of luck with all you're dealing with.
(I am sorry about your parents. Thank you for sharing your experience.)