Death watch

Jazzma

I have been thinking of you often, wondering how it is progressing and how you are holding up. You have been a rock for many of the people here, and I hope you are feeling some strength and support too.

M1

thank you, I very much feel the support every day jazzma. Little change. I fear that this is going to be a long slow slog. Almost wish she were going down faster- the hospice folks assure me that’s not an uncommon sentiment. I fear I could be wrong and she could hang on like this for a long time. She still will wake up here and there and tell me she’s hungry. At least she seems less restless with Ativan on board. Nothing to do but wait it out.

ghphotog

Seems the closer we get to the end of a long journey the longer those last few miles, or years, seem to last.

PookieBlue

May you both be embraced in the loving arms of Our Lord and be comforted. We are only here for a short time, but it doesn’t end here. On the other side of the veil there is incredible happiness. Know that you are loved.

Karen711

M1- I am relatively new here but want to add my voice to the many loving others on this site who are so clearly sitting with you in spirit as you so lovingly sit with your partner. Wishing you and your partner peace in this moment!💕

White Crane

Thinking about you today, M1 and praying for you, too.

Quilting brings calm

@M1 Just checking in with you. Are you getting any rest? I noticed the timestamp on your post on my thread . 1:28am. Sounds like you aren’t sleeping well.

M1

Hah! Busted. Yes I'm many times awake in the middle of the night but that's nothing new, a long-standing issue. Rather than fight it i read for a while. Thanks for asking....but I'm as okay as i can be. This is a long slow slog. We're clearly on a downward trajectory, but I probably misjudged her actively dying. I think we could be in this bedbound stage for a long time. Difficult because she still tries to get up and falls-was on the floor again this week.

mrahope

So, so sorry that you and your DW seem to be in a "stalemate" with the dying process. Yes, you still have her with you, but I know it must be tearing your heart into pieces to have to watch this. Simply hoping that something goes your way soon. Take care.

Cecil Jones

Im truly sorry M1. I can't speak for everyone on this site but I'd like for you to know what an inspiration you have been for me. While you have gone through a lot, you have always taken the time to help others and give great advice. I do appreciate you! Thank you.

M1

Cecil, your kind words do my heart good. I prowl the forum multiple times a day, sometimes it feels like too much, I feel like a blabbermouth, and I wish I had time and energy for other things. But I don’t. This is a lifeline right now and has been for four years (I joined in August 2020, feels like a lifetime ago). If it’s helped anyone else along the way I’m extremely and humbly grateful for that.

jfkoc

Sometimes just waking and getting through the day is about all one can do.

Gig Harbor

M1 I have often found support from this site but the most positive thing to come from it was a response to my first post. It was from a woman who lived in my same town so we agreed to meet for coffee. That was 7 years ago and we talk on the phone at least three times a week. We have been there for each other thru death, cancer, family divorces, births plus all the associated dementia issues. I wish there was a way for a phone tree to be established so people would have the opportunity to actually talk to each other. My thought is you can never have too many friends and even hearing another voice for 15 minutes does wonders to boost your spirits. Thoughts?

Denise1847

https://alzconnected.org/discussion/comment/218032#Comment_218032

Hi M1,

You could never be a blabbermouth. You give so much great advice and knowledge. Your sharing has helped and encouraged me and I am sure many people. Thank you for always being here for us. How are you given the downturn of your loved one? I pray for peace and comfort for you in this last stage of your journey. Please keep posting and shring.

M1

I am keeping a very low profile. There is a rhythm to my days at the moment, don't know how long it will last. The dog wakes me up before six, and i read and have coffee, do paperwork, try to get on my treadmill to walk for an hour around eight. Then i shower and change, put the dog out, and head to memory care (about 45 minutes away) usually arriving between ten and 10:30. She's usually asleep- but i can tell if she's been up by what is rearranged in the room. There's at least minor cleanup and straightening to do every day. If she's awake i might change her clothes or sheets, we try for a shower once a week. Otherwise I'll check in with the staff, then just sit by her bed, watch TV, read and play sudoku on my phone until lunchtime, when I'll bring her food to her in the room and feed her as I sit on the bed. She usually goes right back to sleep after lunch, so then i slip out. I might run an errand or two and get home around three. Theoretically i should have plenty of time for garden and farm chores, but right now it's too darn hot, i try to do the mowing and bushhogging in the evenings. Schedule big projects here and there-we are finally getting fiberoptic cable run in our rural area thanks to the infrastructure bill, and a big driveway repair is supposed to happen sometime this month. I'm never short of things to do but definitely short of energy to do them. But then I'll read or watch things on my Kindle, head to bed when it gets dark. It's a very, very quiet existence. Haven't seen my granddaughters in a long time, and will rarely hear from friends any more. It's just the way it is right now. Every day I wish it were over for both of our sakes.

I don't know how I feel about a phone tree. The introvert side of me says it feels like too much effort at this point.

trottingalong

https://alzconnected.org/discussion/comment/218032#Comment_218032

I’m sorry M1. I look forward to your comments every day and I’m disappointed if I don’t see one.

Quilting brings calm

@M1 I totally relate to the not sleeping. If you noticed, I posted my comment to you at 4:46am. I wake up multiple times a night and at least half of them mean I’m awake a half hour or more. The result at the end of the day? It’s 8:24pm. I'm in bed, checking out things on my phone, preparing to read my kindle too. Probably won’t try to sleep for a couple hours. I will wake up around 7AM. Spouse is in bed too. Asleep already. He gets up around 4am.

As you tell others, just do what you can. Some days that means you get something done. Other days, it means the TV or the Kindle are the our friend for the day.

fmb

@M1

I hope I'm not overstepping, but I gently suggest that you try to see your granddaughters and call or email a friend once in a while. Caregiving, even while at a facility surrounded by aides and staff, is a lonely existence. ((Hugs))

White Crane

M1, I, too, am usually up very early in the morning but I don't seem to get as much done as you do. If I get one thing crossed off my list in a day it's a win. Hang in. I know this is hard. Sending hugs.

Brenda

concerned_sister

If I can offer up a comment re the call tree suggestion:

Early 80's in Orange County, California there existed a dial-a-joke line. It evolved and those who ran it had an alternate number where when random callers called in, they were connected for something like a five minute conversation before being disconnected. I wonder if there's anyone savy who could set up a system like that…each caller is randomized, and can share contact information only if they'd like to continue the conversation. But you could call in anytime, and if there was someone else out there who wanted a conversation you'd be connected. It could be a call in number only available to members here. Just a thought.

Anna2022

https://alzconnected.org/discussion/comment/218046#Comment_218046

I'm an introvert too (and need my down time) but I would love to find some phone-friends close by in Central Texas. If interested in a phone-friend (either man or woman), please send me an email thru this site!

AnderK

The waiting is excruciating at best. You are doing the very best you can is crappy (not my word) circunstances. Be kind to yourself. My thoughts are with you. Kathy

Jo C.

Thinking of you and a soft hug being sent your way.

J.

P.S.:

Years earlier, when this site was still fairly young, open contact was put into play, BUT; it presented unforeseen problem issues with people who were not on the positive side of the ledger in different ways. Very disappointing; we gave up and went back to our usual online messaging and things returned to safer and saner. As said, very disappointing. Always someone or a few lurking, looking to take advantage or to become a very negative influence - sometimes seems like that sort comes out of the woodwork.

I find this site priceless and it helped me keep my head above water when I was in the throes of my experience of my LO with dementia.

J.

mrahope

@M1 I just want you to know I'm thinking of you and wishing you strength through these "one foot in front of the other" kind of days. I understand that sometimes this gets so overwhelming you feel as though you're walking through mud just to get the daily things done. I have those days, too. It's such a tough road, I'm just hoping it isn't too much longer for either of you. (P.S. I'd put seeing the grandkids high on my priorities, if I were you. I've observed that young ones are often much more able to "live in the present moment" than us older folks. YMMV)

harshedbuzz

This part is hard, @M1 . I am so sorry for both of you. Every single aspect of your partner's progression has been traumatic.

With my dad, I only became seriously concerned that death might be imminently possible about 4 days before he died. This spared family the situation in which you find yourself. With my aunt, it was more as you describe which suspended the lives and routines of those family members on the ground (mom and I were several states away caring for dad at the time) supervising her care for her for weeks. It was a painful and protracted period of emotional "on-call".

HB

RickM

Hello M1. Checking in as a Brother in Arms as I am in the same place in my journey with Melissa.

Hang in there. The end, while uncertain how long it will take, is in sight. That is providing me with comfort and helping me to lean into this and connect our souls for the next journey. ❤️