A third doctor now has recommended hospice for my dad. (Dad has lived with my husband and I for over five years now and I am his sole caregiver.). Amongst many chronic health issues is now the fact that they consider him colonized with a particular UTI that ID doc says is futile to continue to try to treat (this is the most recent doc to recommend hospice). Treating UTIs both active and prophylactically for years, he has had cdiff and two recurrences. For this reason, no help in home is available, as I am told that no one will want to risk exposure in case he becomes active again (last recurrence was six months ago).
Dad does not know of this most recent recommendation. He unequivocally declined the others. To him it is “giving up” and, because of accounts from the widows of two of his brothers years ago, he thinks it’s basically assisted suicide without your total control. His PCP had a thirty minute talk with him about it, but he is going to think what he thinks.
Since a bad fall two weeks ago, and to some degree before that, all he does is sleep. His cognition became very bad off and on—although it seems like it has improved in the last couple of days. Contributing to this may be interrupted sleep at night due to back pain and sinus issues. He had become so weak that he could barely stand up or ambulate with his walker, not eating well. That has improved somewhat in last day or so. He is definitely hydrating better and accepting food more readily.
I do not know what to do. When I last spoke to the doctor who most recently made the hospice recommendation, he was still really out of it off and on cognitively, and very weak and unbalanced and mostly not eating well. A couple days later, he now seems sharper and more alert when he is awake—though he is still sleeping most of the time (but is very restless still at night as the pain and sinus issues continue). Dad will just give up if he hears that this doctor, one of his favorites and one for his most primary issues, has recommended hospice. Also, it may be that he is recovering somewhat from the fall and will not be as he was when I last spoke to this doctor. Maybe I should wait and monitor him and if improved, go back to her with this info?
If he doesn’t go on hospice, but is super resistant to going back to the hospital (he has been admitted there many many times in the last year and a half and feels he will die there. Last admittance was ICU and he had hospital delirium), how will I handle crisis (I guess just call ambulance)? He also says he doesn’t want to die in our home and put me through that….
Also, I’m anxious about home hospice. My personal boundary (and he has known this from beginning of moving in), is I cannot do diapers/bedridden. I’ll add now not bedside commode either. (No judgment plz. I have cleaned up SO much poop—regular and cdiff, along with infected pee, over the years, collected poop for upteen tests and urine for monthly labs—the women at our lab place know me by name as I do them, etc). I have a spinal issue that makes it dangerous for me to lift or twist—that I have already largely ignored in caring for him…..
My husband, who has been so patient and supportive of my caring for dad, and who has also supported my mom and dad financially for decades, had already asked me to find a facility placement for dad—before this most recent hospice recommendation.
So, do I ask about palliative care which might be more acceptable to dad at this point? Do I arrange hospice if he agrees, but then how difficult would it be to have him transferred to a nursing home at the point he becomes bedridden? My dad is very resilient. Are there other horrors besides being bedridden that I need to consider if I can handle alone? I helped a neighbor friend who ultimately died in home under hospice, from cancer. I know many times the nurses were not readily available when I called for her when in a pain crisis….. My head is spinning…..
Hospice will just be extra eyes on your dad and extra help for you as far as bathing and supplying him with any needed equipment, supplies and medications all covered 100% under your dads Medicare.
And hospice is available 24/7 and has to respond in timely manner. If you don't like one hospice agency you can always switch to another.
Plus the most important part is that they will keep your dad as comfortable and pain free as possible.
Please call them today and get the ball rolling. Your dad deserves that much.
So hospice is up to him right now. You are so right, he may soon need meds that will help him be comfortable and that may be the way they are accessible! Thank you for taking time to consider my situation and share your wisdom.
I have had to have many hard conversations with dad these past years—including that my mom died, my brother died, his sister died, he has cancer again (but does not now—was successfully treated!), etc. This may be another.
Do what your husband wants. Don't hesitate. He's the priority. Your husband has been a saint up to this point and now he deserves to retire from servanthood to your family. Please recognize this and get your Dad into a facility. Tell him whatever therapeutic fibs are necessary ("It's temporary").
And yes, he is really tired of hospitals but has reveled in and taken comfort from the great doctors he has—that may be part of his reluctance to truly consider hospice.
My dad did in home hospice for four months and I thought it was a great thing for him, but they don’t provide round the clock aides, you have to hire them. When my dad became totally unable to stand without falling (but he kept trying over and over) we transferred him to a hospice facility for what turned out to be his last few days.
best wishes to you.
This will then take it out of your hands.
Just to be clear about palliative care. That is to continue treating without escalation of care, which gets you nowhere for treating infections and also no custodial care will come to the house without hospice, which elevates compassion and comfort care. I guess for you extra time to keep him alive is more important. Go ahead and learn how to keep him cleaned up then.
I also acknowledged being torn between being transparent (as I have ALWAYS been with him, as a matter of respect), and having qualms about discussing this new recommendation as I know it will devastate him, and will hit him hard when he is already down.
Perhaps just pointing out that it is information he deserves to know in revisiting the choice would be a more productive point than disregarding my discussion below (and I know it’s a lot to read and not everyone has the time or inclination to carefully consider all that has been said) and basically attacking me?
Anyway, I think your basic point is that you think he could benefit from hospice and just tell him. Thanks for your input but really no thanks to the venomous spirit.
Yes, it is time. 3 Doctors have told you it is time.
I completely understand your reluctance to have him die at home, with you cleaning up the poop. Hospice does not provide any of that hands on care.
However, look for a hospice provider which offers on-site care. Search online for On-site, Residential, or Inpatient Hospice. This will relieve you of the burden and allow your father to be comfortable. Then, remove your worry about what else will come as he becomes bedridden. No need for head spinning!
My concern was that this recent doctor listened to me describe what was then his current state and he has made some improvements since then, and I was second guessing if that would influence her recommendation. I think probably not now, since much of her recommendation probably stems from the fact that clinically she has run out of treatment options for him.
And yes, the changing him if he becomes bedridden is a boundary I set for myself early on (and so did he) and is a consideration emotionally and physically, but beyond that the fortitude to make the med care decisions I know will be involved may be beyond me in truth. I know myself, and I know how hard seeing this decline so far has been, and I know it will only get harder—pretty wimpy I know, will have to give more thought. Not that I will abandon him at any point—I will always be there physically and in every way and always have been. It’s just daunting considering doing it pretty much completely alone 24/7 with him worsening….
Thanks for taking your time.
Your dad is in a different situation. He's lucid for the most part and he lives with you. Here's the tactic I'd take if it were me. You already have an agreement with dad that you'll not be changing briefs. He's this-close to needing them now. Have an honest discussion about your physical limitations now, and the incontinence matter that's going to be an issue sooner rather than later. Don't mention hospice. Tell him you need him to move into Assisted Living or Skilled Nursing care now due to the above reasons, that his care is now out of the scope of your abilities. You love him dearly and will visit him there all the time, you're not abandoning him, just shifting his care onto a team of people who can physically handle it.
Then, after he's placed and acclimated, then hospice comes on board and it's like nothing is very different at all. Just more RNs and CNAs helping to care for him, that's all.
I'm sorry for your situation Hope. This is a very difficult situation to be in, for all of you. I understand completely. Now is not the time to strip dad of the last ounce of dignity in terms of decision making ability he has left. But it is time he be moved to another place to live, where he'll have a village looking after him instead of an exhausted and emotional daughter. It's time now.
Best of luck to you.
Thank you for responding honestly. I appreciate it.
It shouldn't take too much effort to enforce your POA status.
He definitely needs hospice, especially if 3 doctors have told you that. Hospice is NOT going to cause an early death. They're there to help with pain management and necessary things like supplies you need to care for dad. If his health was to suddenly improve, hospice would not keep coming upon reevaluation. He would be dismissed, and later on could be evaluated again when their expertise is needed.
Listen to the three doctors. If your father is making his own decisions, fine. Let him negotiate with them. But let him do it once he's out of your house, and with people other than you to provide whatever care he agrees to. It's time to let go and let trained staff handle him and implementing his decisions. Accept your husband's request. He deserves it after all this time. And so do you.
The hospice RN or Nurse Practitioner will come to the house and talk to him before they make the decision to admit him. They talked with Mom for 30 minutes each time as part of her evaluation.
They spelled out to Mom what going into hospice meant. "We will be discontinuing these meds." "You will get a hospital bed." "We will visit once a week." "You will get a black box delivered to the house that contains morphine and haldol."
This is not something you can do behind the scenes without his knowledge if he is lucid. It is highly unethical.
A medical transport ambulance can transport him from your home to a physical hospice or a nursing home.
Why don't you consider moving him to a nursing home? Most nursing home residents are not in hospice.
He can move to a nursing home and g et care but not be enrolled in hospice.
You can take things day by day. We enrolled Mom twice in hospice. Each time it took 24 hours.