Dad with dementia, COPD, CHF now in renal failure-wants no treatment

TrumpetSwan

I moved both parents to an ALF three months ago. Both with AD. Dad has COPD and had been hospitalized to treat new onset CHF three months ago. When he was released from the hospital we moved him straight into an ALF with my mom.

The ALF called last night saying dad now shows signs of beginning stages of renal failure. They suggested dad go to ER to be treated as they do not have the necessary equipment to treat and monitor his condition on site. I talked to both parents about dad's worsening condition, and the recommended course to go to ER. My dad said he does not want any more doctors. In his own words, he said "you can carry me out of here and take me straight to the funeral home."

I believe dad is aware of his condition, but my mom is not. Dad said more about not wanting to "mess around with doctors". I said I support his decision and if he changes his mind, I will take him to ER and left it at that.

I guess my question is - Is this the appropriate thing to do? Do I just honor his wishes at this point and make him comfortable?

He has a Will stating not to take extreme measures to prolong his life. I think the term "extreme measures" is open to interpretation. It does however state he does not want to be on a respirator but will accept meds for pain and fluids for hydration.

I asked about a referral for palliative care, and they agreed and said someone will call me to make arrangements. So, do I just wait for the inevitable downturn now? Are there any other aspects I am overlooking in this situation?

I do not have a crystal ball, but sometimes I think he will not make it through the week then other times it seems he may go on for months and it is so hard to watch.

Thank you.

M1

TS I think your dad is making a very wise decision. Perhaps hospice will be even more appropriate than palliative care, you can ask this when they call. I would also clarify with the ALF that they are willing to let him "age in place" i.e. die at home without further intervention. Some facilities are better about this than others.

The ER is the last place on earth I would take him. Chronic renal failure is NOT an emergency and I think they would be at a loss as to why he was there. High potassium is frequently what causes death in renal failure and it's a pretty easy way to go, frankly. I would NOT monitor for it and would not treat it.

Jeanne C.

I agree with M1. I think it's worth a hospice evaluation. One thing I did as my husband's POA was complete a medical scope of treatment form with the hospice social worker. It clearly states no ressusitation, no artificial delivery of nutrition or hydration, no transport to another care setting (unless comfort measures cannot be performed in place), and no treatments beyond comfort care. It provides me with peace of mind to know his wishes are documented and will be carried out.

Quilting brings calm

I would also call in hospice. That might allow him to remain in the ALF until the end. That’s the route we went with my step-dad with COPD and thyroid cancer in the lungs and whatever finally did him in( suspected more cancer).
I had an aunt die of renal failure( she refused dialysis when it became necessary). Also a cousin -Covid complications caused renal failure.

@M1 - I understand your point about the ER. However it’s becoming apparent to me that doctors aren’t able to just admit their patients to the hospitals here like years ago. They tell their patients to go to the ER and the ER doctor will arrange if admittance is necessary and a hospitalist will provide care there. It sounds like the poster’s Dad hasn’t actually been diagnosed with renal failure yet- but that the ALF suspects it.

MN Chickadee

Even if he was unaware or couldn't communicate his wishes, I would definitely call in hospice (and verify he can stay in the current facility with hospice, if not find a place he can.) Sounds like the hospital is not the right place for him with everything going on, and would only prolong suffering from these diseases. The dementia alone is terminal and without cure. Hospice will know how to make him comfortable. It could mean separating him and mom though. She may not be an assisted living candidate once he is incapacitated. Does the facility have a social worker that can help find options? She may need memory care as he declines and can't be there for her, and he may need a nursing home or dedicated hospice house or similar. Let us know how things go and sending you peace and strength for the coming difficult days.

terei

IMO you did exactly what he wants you to do + that is appropriate. I would call + get a hospice evaluation. They will make sure that he is

not in any pain. Your father is a the end of his life + he has come to terms with that. I also suggest reading ‘Being Mortal’.

harshedbuzz

@TrumpetSwan

I am sorry to hear of this development. I can appreciate that you've been in a phase where every time you start to adjust to a new situation, the rug is pulled, and you find yourself trying to wrap your mind around some new set of circumstances.

Back in April you made a post about the possibility of someone having a fairly stable decline for a couple years and then going downhill rapidly. It sounds as though this is where you are with your dad.

IMO, and more importantly your dad's, bringing in palliative/hospice support would be preferable for him at this time.

There are some here who would consider the renal failure an exit ramp from the horrors of end-stage dementia. My own grandfather died from renal failure. For him it was a gentler end than either COPD or CHF were for family members who died from or with these conditions.

HB

TrumpetSwan

Thank you so much everyone. I feel like you are all a lifeline to me as I continue to adapt to new circumstances. I have a sister who is involved, but we have had a combative relationship for several years and communicating with her can be very difficult. So - thank you.

I am comforted by comments saying renal failure is not the worst way to go. If indeed that is what ends his life, I hope for him it is peaceful, and he is allowed some dignity and peace.

I believe he wanted dignity and peace and privacy and until three months ago he had that as he was living in his own home with my mother. However, we placed them in an ALF where now I am sure he feels he is under the scrutiny and decisions of others. He complains about how my sister and I "did this to him". He said he was doing fine but now is so feeble and he is angry at us. It is hard to hear that, but I suppose he needs an outlet for his despair and I am an easy target.

Nobody has told me he is at the end of his life, nor indicated a timeline however I just feel like we are in the final days/weeks.

I want to do what is best for him and my mom. Dad is so worried about who will look after my mom. His thoughts are about her. I tell him she is a great place with caregivers, she will stay right where she is, and my sister and I will look after her. He just nods, but I know he is hanging on for her.

I spoke to Hospice, but they said they will take dad off all his medications and I know at this point dad still takes comfort in having his inhalers, steroids, and nebulizer. He has one inhaler he said is a "life saver" and he holds onto it in his pocket for dear life. I do not want to take anything away from him at this point. So the decision is to remain "status quo" with his current medication routine and make no visit to a specialist or ER. I also do not want to put someone else in their situation who is intrusive as I know they are still acclimating to the community. I just want dad to do what HE wants.

As for my call to the Hospice rep, I actually found her a bit aggressive and pushy. She made two calls to me within a 24-hour period asking me to call her back. This seemed aggressive when my dad has not even been given an official diagnosis of renal failure (just expected), just been advised to seek a cardiac specialist or go to ER for treatment. Dad just said he does not want to go to the hospital.

I just want him to remain 'status quo', and if he changes his mind when his symptoms worsen we will do what he wants. I hope that is OK at least for the near-term.

This is some of the hardest stuff. I just want to do what he wants. Thanks.

JDancer

I would consider respiratory meds to be part of palliative care. Few things are as difficult as struggling to breath. You might ask the palliative care team if they can be continued.

Quilting brings calm

My step-dad went on hospice in February. He chose to stay on all his meds except two: a B12 shot and a calcium tablet. He had COPD and he kept his inhalers etc. I’m not sure how much he used them. I am not sure why the hospice rep told you he’d have to discontinue his meds.

midge333

I agree with @JDancer , his respiratory meds can be considered comfort care. I would ask the hospice team to continue them.

TrumpetSwan

Thanks again everyone. I got a call from the Hospice rep last week correcting her earlier statement about removing his prescription meds. She said "she checked with her staff" and wanted to correct her earlier statement. She stated we/the family can do as dad wants. She also stated we will sign paperwork with his wishes as such and all will agree. She said they would only discontinue meds if it is deemed no longer beneficial. That made better sense to me.

Overall, dad needs more supportive care than the ALF staff is giving. I made plans to schedule the consultation with them this week with mom, dad and my sister. The ALF said mom and dad can stay right where they are throughout and do not need to move. That is also helpful as moving mom and dad now would be a huge challenge.

We now enter into another new phase. I never wanted to be in this spot. I am most certain dad does not have much longer in this life. Mom has rather advanced dementia (stage 5-6), and I know she will become undone once her husband of 67 years is no longer by her side. That will then usher in a totally different aspect to deal with as if this is not enough. I sort of thought I would only have to deal with one parent's end of life at a time, and now I just want to scream that it has come to this.

Thanks.

Quilting brings calm

Trumpet

Mom is stage 4 moving into stage 5, and two things happened almost simultaneously this spring . My step-dad passed away the end of February after two weeks on hospice and Mom went on oxygen April 11. Dad had COPD and thyroid cancer. They would have been married 60 years in June

Mom is declining- but slowly. She is depressed, but more about herself (the oxygen ) than Dad The AL staff have said she rarely brings him up. I think it’s because she is usually in the moment because she can’t remember what she did this morning/ so she can’t remember that she might be grieving. I don’t think she could tell you the date he died or how long it’s been.

It’s possible your Mom may react the same way. Grieving, but then living just in the moment.