How To Prepare for the End

CindyBum

Hospice ordered a hospital bed and a wheelchair for my DW today. Her progression has been so rapid all through her disease, that I imagine she will be bed bound by the end of January. Who knows if she'll plateau or keep her breakneck pace. It has gotten me thinking more concretely about her end of life and how I might be able to take this time to prepare myself. Is there a way to prepare myself?

SDianeL

I’m so sorry. You’ve done all you can. I never found a way to prepare. I didn’t want him to go but I prayed for a peaceful passing. Talk to her every moment you can. Hearing is the last to go. I played his favorite music. I talked about our travels and about our children, grandchildren and great grandchildren. I told him I would be OK and I would love him forever. i talked about his Mom. Talk to hospice constantly and they also have counselors and clergy you can talk to. Sending prayers, love and hugs. 🙏💜

CindyBum

https://alzconnected.org/discussion/comment/263626#Comment_263626

Thank you. This is so helpful.

hiya

https://alzconnected.org/discussion/75107/how-to-prepare-for-the-end

Cindy, I am so sorry for you and your husband. I am in a similar situation, though maybe a step behind. My husband has been in Geri/psych for 2 months. He can’t walk and is in a geri chair He is stage 7 and will qualify for hospice. I like you and so may here, don’t want our spouse to go but pray they will have a peaceful passing soon. I know it’s going to be so sad when they pass but am trying to focus on what they would want and know they are free from this awful disease. I’m not sure how to prepare apart from knowing they are in a better place. Sending a hug to you

jgreen

Dear @CindyBum

You have stepped up to this awful challenge and found a way every time. I pray that you will continue to handle things with the love and compassion that are truly your gifts to your DW. You are an inspiration to me and I thank you. God be with you!

Vitruvius

About 18 months ago during one of my weekly hospice updates they suggested that my DW had reached the last substage, Stage 7f, and her time was growing short and they anticipated her passing “soon”. They advised me to have a plan for her final arrangements.

I did so. Because my DW has a rare form of dementia [Semantic Dementia] she had been originally referred to a major university medical hospital that had specialists.  At that time they had indicated that they would like to autopsy her brain as part of their research. And so I decided my DW would want to help others and I contacted them and they talked me through the process and recommended a funeral home that they work with for such occasions and I spoke with them as well. 

Although this all proved to be premature I am glad I thought through the logistics of her passing as it also helped me prepare a bit more for the emotional journey that I knew would result as well.

One thing has been pretty hard. My DW had only been diagnosed less than four years prior to the first hospice warning 18 months ago, so things went fast as confirmed by her neurologist. But since hitting the end substage she has declined more slowly through a long drawn out Stage 7f. Both hospice and her MCF keep suggesting that the end is near and I should prepare myself. But she just keeps hanging in there. Hospice and the MCF tell me few get this far along. It is one thing not to know how much longer it will be for your LO, but it’s harder when the indications keep you thinking it could be any day. All I can suggest is to be ready, but be flexible.

Quilting brings calm

I recommend that you contact the funeral home and start the arrangements for whatever level of service you want ( if any). There are also direct to cremation facilities if you want to go that route. I truely mean this - the level of service is totally up to whatever you feel you can deal with and pay for. We had a full service for our son. My parents were cremated - my step-dad’s ashes were held at the funeral home until Mom passed, they were buried together in a joint pavilion service at the veteran’s cemetary. Then when my sister died, I had her cremated and buried at the foot of my grandma’s grave without a service. Each one felt right at the time

Locate the will, start gathering documents, accounts, passwords. Because you will get in a fog later.

Having done all the paperwork stuff, then just go with the flow. Rest when she does. Shower etc when she is resting. Talk to hospice whenever they are there about what she needs to be comfortable. The nurse will gradually increase the frequency of their visits - and that’s a clue that time is drawing closer. If there’s people you want to come visit her, call them.

annie51

Cindy, I agree with @jgreen that you have been an inspiration to us with your continued care of your DW and hanging in there when things were so bad for you. You’ve gotten lots of good advice here already. I will agree with @Quilting brings calm on making as many arrangements ahead of time that you can. I got that advice from a fellow spouse when her DH passed away Dec 26 and she had to make all the arrangements while in a state of grief…unfortunately I didn’t have time to take her advice because my DH passed just a week later. It would have been easier if I had met with the funeral home ahead of time and thought through all the decisions you need to make.
As for preparing mentally, @SDianeL laid it out so beautifully. Sending warm thoughts and a big hug.

CindyBum

Thank you all. I will get going on final arrangements next week. I'd rather be ready. I am definitely keeping what all of you have said about being ready, but being flexible. One of my caregivers said the same, "Don't get ahead of yourself on when she'll go."

I am quite sure now that my DW has Lewy Body dementia. It really explains her rapid progression. She's 3.5 years from what should have been her diagnosis with dementia and not quite two years from her official diagnosis. Definitely in Stage 7.

The caregiver stress is not as high these days, but the grief sure is.

To my good fortune, my DW has hallucinations she enjoys. I swear she's at a big family gathering, something she loved more than most anything. She is always laughing when she's talking to people I don't see. She has also returned to being the sweet person with an easy laugh that I've always known and our time together in these last two stages so far has been incredibly meaningful, tender and loving, despite the crazy wandering we suffered through. I've said what I wanted to her and I know she's been able to understand.

She's still wandering during her ever shortening days, but oh so slowly and largely in her bedroom. Her bedroom is pretty small and she's much safer in there, so that's a big relief. I'm watching her on a camera right now sitting on the edge of her bed, staring out the window.

Hang in there everyone.

RetiredTeacher

You too CindyBum. Hang in there. It's good you can appreciate something during stage 7. 🫂 and 🙏

BPS

I have started collecting pictures and making a slideshow of her life and picked some music that I will play at her calibration of life after this is over and started writing my feeling down. For me it helps doing something to prepare knowing how this ends.

Karen711

Dear Cindy-I can’t add to the wisdom and wealth of experience offered to you here. I’d just like to add my voice to the others in offering you love and support for what you’re going through. Your DW is so very lucky to have you.
💜

Karen