Palliative care vs hospice, chronic foley vs Suprapubic catheter

Id go the hospice route and leave the Foley in. A chronic Foley is going to be colonized with bacteria, but if it's draining properly, it should not cause sepsis. I wouldn't put him through any more procedures. A suprapubic catheter doesn't necessarily stay sterile and becomes colonized too, so it really wouldn't gain you anything. It's time to quit sending urine samples at all and just make sure he's not in pain.

@times2 Please try to have at least a tiny bit of peace of mind if you can, regarding hospice. It does not mean you are deciding the end of his life. That is a stereotype and myth about hospice that keeps too many people from accepting the tremendous help and compassionate care they provide when people are indeed terminal, and nearing the end of their lives due to a fatal disease and health status that you did not cause + cannot cure. Hospice does not speed up the end of life process.

Dementia is deciding the end of his life actually, not you. By choosing to have him evaluated for hospice support, you are simply making comfort care decisions for your LO. That is wise, kind, medically sound (he and you will have so much more support and weekly visits from a personal nurse, CNA, and other professionally trained team members to monitor his condition with 24/7 emergency access and on call nurse/doc if needed. They ensure the least invasive approach to address anything that comes up and can provide oral antibiotics for example, to treat his UTIs without the revolving door of ER and all the extra trauma that setting causes a PWD.

Hospice has been a godsend for us, as my DH slowly but surely slips away. It has been 2 years and 3 months and he keeps requalifying given his status at each reassessment. Now in Stage 7, it is likely he will remain on hospice until the end though he graduated off it briefly at the 1 year mark and we changed agencies. Both teams were great though, and hospice nurses are very special medics (and people. I think they are angels really). Palliative care did not provide us the support he needed. They eventually recommended hospice.

His prior falls, UTIs and flare ups of his chronic disease have decreased, and his condition is well managed with the medical care routine hospice helped me establish from the comfort of home. The supplies plus equipment are provided for us, meds delivered to the door within 24 hours (usually same day) etc. As heavy hearted I am about his horrible disease and this long goodbye with so much heavy lifting that I do daily to care for him, I don't know what I'd do without hospice. I'm sorry for what you and your dad are going through. May help be just around the corner, to ease your burdens and the pain of this phase.

@times2

Your experience with your dad is almost the same as my experience with my 92-yo DH. A mild stroke last June, ALZ symptoms for at least 7 years (now Stage 6 and losing weight quickly), congestive heart failure, and numerous falls (including one with severe injuries). 6 hospitalizations in 4-1/2 months. He is now in AL with enhanced services and is under hospice care.

He has had a chronic Foley since October 1. Failed numerous voiding trials. Three UTIs. Hospice is able to prescribe antibiotics for the UTIs without having to send out a urine sample to be cultured. Due to an enlarged prostate and latent prostate tumor, inserting the catheter has become more difficult. A supra pubic catheter was suggested at his last change a month ago. After a great deal of consideration, I declined to have the procedure done for many of the same reasons you give. The risk of infection is almost as great as with a Foley. I do not want to put him through the trauma of the procedure in order to give him another month or two of life. When he entered AL in late November, he declared "No more hospitals!!" As an added consideration, in our state (PA), personal care and AL facilities are not allowed to have residents with a supra pubic catheter. He would have to move to a SNF, a move that I think would kill him. Quality of life is more important than quantity.

This was the most agonizing decision I have ever had to make. It brings tears to my eyes as I type. He is to have his catheter changed today, and I am praying that it goes well. If the new catheter cannot be inserted, the end will come very soon. I am leaving it in God's hands.

Do consider hospice care for your dad. DH has not been told that he is in hospice care, only that he is receiving "extra services". Everything @ButterflyWings said above about hospice we have found to be true. It has been a real blessing for DH and me.

@times2

I feel for you. This all sounds so complicated. One thing that struck me in your post was the month of rehab-- it's unusual for a PWD to engage in rehab and benefit unless they're at early stages. I wonder if wanting to continue OT and PT is about the social piece; mom (no dementia, per her doctors) just finish an extended run of OP PT twice weekly where the staff doted on her. She misses the attention. Perhaps he enjoyed that as well.

Tam-Cummings-LLC-Handouts.pdf (tala.org)

I'm sorry you are going through this. At any age when our parent reaches the end its hard to wrap our heads around and accept we have run out of options to fix it. Try to think of what you would tell someone else in your shoes. He is 86 with a terminal illness that is destroying his mind and body. Any more procedures would bring what? A few more months without his mind, more falls, more UTIs, more hospitals? Added risks? Trauma for him and you? I would take to heart the true goal of hospice - comfort and peace in the final days. Make him comfortable, tell him what's in your heart and cherish your final days and give him a peaceful send off. It is so damn hard to accept. After he's gone you will be filled with what ifs. What if there's more I could have done, what if I had made this or that decision differently. That's normal but heart wrenching. It's such a responsibility to have an elderly parent's life in your hands. Wishing you peace and strength.

Awww, what a wonderful moment. Even when their minds are gone there can definitely be these gifts, these moments in the final days to find real connection you will always cherish.

Bless you both. At this point one of my LOs actually saw the dogs running and playing outside (one was red, the rest were white) though she was bedridden and the curtains were closed at the time =)

And she also saw a little boy in her room that she always mentioned for the last couple of weeks I guess. He showed up regularly she said, seemed fine, didn't bother her at all and I don't think they talked.

Thank you for the update. We are thinking of you. He is so fortunate to have you near and helping ensure him safe passage.

My Mom came as a butterfly too, fluttering around my face at the grave site. Your Dad is blessed to have you. You’re in our prayers as you continue this journey ❤️