End of life planning and final wishes.

LaneyG

I am very embarrassed to say that DH and I were master procrastinators when it came to end of life planning. Of course I am now worried about this. I wonder if it would be a mistake to try to discuss his wishes during one of his lucid spells. I don’t want to frighten or distress him.

Pat6177

I guess that depends on your husband. My husband and I have spoken openly about this topic. He often tells me he’s not going to last forever and that he’s got to go sometime. To which I reply, yes, but not this week, right? And every few months, he’ll ask me if we’ve made our final plans. Another person might not be comfortable with talking about it. Maybe there’s an indirect way you could bring up the topic - maybe when a family member passes or even a celebrity dies. Just to test the waters.

Denise1847

Hi Laney, It depends on how much cognition he has left during his lucid periods. My DH would not understand and could possibly misunderstand my motive. Pat had a good I idea that could be used.

ButterflyWings

@LaneyG do you mean funeral arrangements or such? Or advance directives like DNR, and estate planning like living will or POA and other very important decisions? If you have already done the things that are crucial to do with a Certified Elder Law Atty, (CELA) ideally, then maybe it is something you can casually discuss as if it is something you want BOTH of you to review…"I'm thinking about writing my own tribute to make it easier when my time here is over…".

I don't recall what stage your DH is now, but mine has had anosognosia since early days and no insight that anything is wrong. So it could not have been a conversation about him. But we discussed our thoughts intentionally when we got serious about each other, and again in wedding planning prep. And again after his diagnosis, and put some things in writing at that point. Within a year after that, he would not have been reliable to have a conversation about it without maybe conflating it with other things and possibly even triggering delusions that the end was near or the non-existent "intruders" were going to kill me or him.

Jeanne C.

I recently made funeral arrangements for my husband. We had set up our advance directives when he was still able to sign and we had discussed our intention to be cremated. It was still difficult to plan the funeral, for the obvious reason, but also because I was really guessing at his wishes. I think I've done right by him. I relied on years of knowing him and his general preferences to put together the simple ceremony I think he would want. I didn't try to discuss it with him because I'm certain it would upset him and cause anxiety. Not to mention he isn't very communicative anymore.

It was difficult for me, and I definitely cried over it, but I'm relieved to have it handled.

Hugs to you, Laney - you're doing right by him.

Vitruvius

My DW is well into Stage 7 and on hospice, she is 72. The hospice nurse last week advised me that it was time to look into "final arrangements". Not that her passing is coming in days, but that she wanted to advise me not to wait until it was only days. Sadly we never really talked about such things when she was fully cognizant, and then it was too late. Since the nurse mentioned it I have done nothing. The finality of it is too hard to think about.

l7pla1w2

https://alzconnected.org/discussion/comment/208291#Comment_208291

Remember that the deceased is not going to know whether you followed their wishes or not, and "getting it wrong" is distressing to you, not them. As with so much else with this disease, do the best you can

Kibbee

DH and I cared for his mother who had Parkinson Disease with dementia. As part of the spend down leading up to Medicaid approval (after many years of private pay) we were advised to make prepaid funeral arrangements. We knew what she wanted, and so every detail of her funeral was determined and planned at that point. I even went so far as to buy all new clothing for her to be buried in. She died about 8 months after we had done this. Having the funeral preplanned and already paid for made things simple and stress free for DH and his sibling.