Transitioning?

BassetHoundAnn

My mom will soon be 98. She's been in memory care for three years. For the last 1.5 years she's been in Stage 7 of Alzheimer's. She's been on hospice for 2 years now. About 1.5 years ago hospice told me she was actively dying and had only days to live. She was in bed on oxygen for about 3 weeks, struggling to breath, mostly unresponsive. Then suddenly she was back to her baseline. Last fall, a similar situation.

I realize that in Alzheimer's the final descent is very gradual, with many sudden drops followed by inexplicable rallies, and long periods between these events.

In the last week she's suffered another downturn. At least according to what I'm seeing and what staff has been telling me. She's sleeping all the time. When I visit she's mostly unresponsive, speaks only a bit of gibberish in a very soft voice, and is mostly uninterested in eating. When I visit I bring sweets and juice and she always dives in, but not lately. She picks at her blankets. Her legs are often agitated. Last night she was holding her legs straight out in a strange posture, something staff has also noted. When I changed her socks she reacted in pain, but then denied she was in any pain.

I contacted hospice today and a nurse visited her. She reported that she's doing just great, all vital signs are normal, and she was in high spirits, talking animatedly, looking forward to having her hair done at the salon. I visited a couple hours later and she was catatonic, unmoving, unresponsive. An aid said she had spoonfed her a little at supper but otherwise no interest in food.

This is all so harrowing to watch. Has anyone else gone through this with their parent?

harshedbuzz

@BassettHoundAnn

We saw this pattern with my aunt. She likely had symptoms of which her late husband was aware by 2000. She was diagnosed with dementia in 2008 when her sister came to visit and found her in a cold dark house wondering why the cable was out. She went into a MCF in 2009 after sister obtained guardianship. She continued to progress very slowly. Her stage 7 last almost 3 years and was marked by several periods like you describe (no eating or drinking, little gibberish and seemingly unaware of things) for about a week or so before snapping back to a previous baseline where she's accept handfeeding and happily watch the goings on around her. Each time family prepared for the end, but it didn't come for sometime.

I wonder if what you noticed with her legs was "posturing".

The difference with the final episode was that she had some of the physical signs of active dying— mottled skin, cool extremities and some rare-for-her agitation.

HB

BassetHoundAnn

https://alzconnected.org/discussion/comment/207753#Comment_207753

Hi, HB,

Thank you for your reply. I had not heard of posturing. I will investigate that.

My mom hasn't walked in about a year. She's in a geri-chair because she can no longer sit up without support. Sometimes she will hold her legs horizontally as she sits in the chair.

It sounds like she is enduring what your aunt suffered through. One of the odd things is that my mom has exhibited for years behaviors and symptoms that are considered classic signs of imminent death. Her arms and legs have been ice-cold for years due to circulatory problems. And talking to dead people, she's done that for a long time. At times she has insisted that several sisters and deceased husbands are with her in memory care. I think it was about three years ago when I saw her for the first time reaching both arms toward the ceiling, as she lay in bed, pawing and grasping. I asked her what she was reaching for and she said "There are people up there dancing."

Several times hospice nurses have told me that she's experiencing terminal lucidity, but her lucid periods go on for weeks or months before the next crash.

BassetHoundAnn

It seems like a lifetime since I started this thread though it's been only weeks. Last week I got emails from hospice nurses reporting that my mom was declining. We had a care meeting with nursing at her memory care. Sometimes you get a sense with people without them saying anything that sympathy is the main message they wish to extend. My mom is still eating. She needs to be hand-fed. The rest of the time she's asleep and can't be roused.

Some days she responds to me in the form of recognizing me briefly, saying my name in surprise, then falling back asleep, some days nothing at all. My husband has stopped visiting with me because she no longer recognizes or responds to him. In the past she was always very happy and animated around him, so he felt an obligation to visit her every day with me.

About a week ago she told me she talked to her sister who is long deceased. The strange thing was that this was a sister she was never close to. She said her sister told her that she needed a maid. My mom snickered "If she thinks I'm going to be her maid…no way!" Those were the last coherent words I heard from her.

harshedbuzz

@BassetHoundAnn

I am so sorry. This is hard stuff. Your descriptions of your mom are very like my caregiving aunt's descriptions of her dear sister I described earlier.

The story of a someone visiting/preparing for a trip is a common theme at end-of-life according to hospice nurse videos I have seen.

My own dad did this hours before he died. I went to visit and was struck by the disconnect of how changed he was physically (compared to 2 days prior) in context with how verbal he was describing in great detail a visit from my sister. (The SLP evaluation his swallowing overheard and had no idea sis was no longer with us) Sister had been his favorite and died 25 years before. Throughout the middle and late stages, he struggled with knowing whether she was alive, sick or dead and would routinely ask "She's dead, isn't she?". On this day he spoke with conviction about a lovely visit together (his description matched the pre-illness best version of her) and how she'd be coming again soon. I got a call around 11pm that he'd passed.

HB

BassetHoundAnn

https://alzconnected.org/discussion/comment/209671#Comment_209671

I'm so sorry, HB, about your dad, and all that he went through. It is heartbreaking, isn't it?

Today when I visited my mom I found her slumped in a recliner, unresponsive. I tried to wake her, but she only fluttered her eyes a bit and that was all. She looked gaunt, her cheeks sunken. She looked much worse than she had yesterday. I got the aids to help me get her into bed. I and a facility nurse called hospice. One of their nurses came out. She said my mom's vital signs were still strong and all normal. Good breathing, strong heart and lungs, good GI, strong pulse, good color. She said she's transitioning. I stayed with her for hours. We could not get her to eat or drink. The aids said she had eaten a little bit earlier in the day. At one point her face and hands felt feverish, but when we took her temp it was normal. When I left in the evening with a heavy heart she had still not responded.

This is a helluva disease, isn't it?

harshedbuzz

@BassetHoundAnn

This is hard stuff. Wishing you peace and strength.

HB

GothicGremlin

@BassetHoundAnn - I'm so sorry. Early in Peggy's transition I was sitting with her, and I rearranged the quilt that was covering her. Her hands and arms felt hot, but like your mom, she didn't have a fever. Sometime later when I touched her arm again, her skin felt like it was at a normal temperature. It's part of the transition. 🙁

Thinking of you ….

M1

You remind me of my mother, who very patiently sat with her 98 year old mother while she died. I hope it is peaceful. Hard to argue with 98 years.

BassetHoundAnn

Thank you, MI, GothicGremlin, and HarshedBuzz for your kind words and insights. They helped me get through this past week. My mother died as I held her. The end was peaceful, but still so hard. I have never been as exhausted and grief-stricken as I have been these past days. Making funeral arrangements and cleaning out her room is still ahead of me. I've been too exhausted to do more than make calls and work on the paperwork.

I thank you all from the depths of my heart. I couldn't have navigated these past few years without your goodness and kind words. Thank you!

M1

So sorry for your loss BH. Glad she is at peace and not suffering any more. An angel now.

JeriLynn66

I'm so sorry for your loss. Sending healing love and light.

ButterflyWings

(((@BassetHoundAnn))) Heartfelt condolences. You provided her with safe passage. Blessings to you and may she rest in perfect peace. Lifting you up at this time of sadness yet relief that the long journey is over. May your memories of better days bring you comfort and joy in time

fmb

So very sorry for your loss. As she is now at peace, may you also find peace and strength for the days ahead.

harshedbuzz

I am sorry for the loss of your dear mother. She was blessed to have a peaceful end in your arms. I wish you peace and strength for the sad tasks ahead.

HB

GothicGremlin

@BassetHoundAnn I am so very sorry. You've been so strong throughout, and took such good care of your mom. If you can, give yourself just a little bit of time before you have to get to all of the tasks in front of you.

The day after Peggy passed away, we cleaned out her room in memory care, most things we just put in short term storage. We made all other arrangements for a month out (except for cremation, we did that as soon as we were able) - and then we all just rested, reflected, and took stock. It was nice to have those few peaceful weeks.

I hope you're able to also get some rest before everything. Please take care.

Emily 123

I'm so sorry BHA,

Please take care of yourself as you grieve.

Hope5757

@BassetHoundAnn -

I’m so sorry for the loss of your dear mom. I hope you are able to find rest and comfort.

BassetHoundAnn

https://alzconnected.org/discussion/comment/211079#Comment_211079

Such wise advice! Thank you GothicGremlin. This is the path I'm going to take. I cleaned out my mom's room in memory care today, put everything in my basement for the time being, and made arrangements for her cremation. But as you suggest, I'm going to wait a few weeks to get my bearings before planning anything. Get rest, reflect, take stock.

The day after she died I was just wasted. Exhausted mentally and physically. Could barely move. Cancelled he appointment with the funeral home because I was in no state to think, drive or make decisions. Just lay in bed all day numb.

It's funny but as a caregiver I've had this constant dialogue in my head. "Would my mother like these flowers/slippers/cupcakes/etc?" "What would help her today?" "Should I take her these things?" "If I play this music would it cheer her up?" "Should I email the nurse about x/y/z?" "Was her day good?" "Is there anything I can do to help?" My mind still wants to ask these questions. Every few minutes I need to mentally stop myself and say no, you cannot bring your mother flowers. You cannot bring her cupcakes. You can stop emailing the nurse. You can stop worry about all the details of her life. But my mind still keeps spinning around the questions. My mind keeps asking. It keeps obsessing.

I understand why they call this Stage 8.

Thank you everyone for your kind words and condolences. They mean a lot.

MN Chickadee

My condolences to you BHA. You were a good advocate and daughter and she was lucky to have you. Wishing you peace in the coming days.

mommyandme (m&m)

I’m very sorry that you lost your dear mom. I’m glad you were able to be close with her, holding her, as she flew on. She knows how much you loved and cared for her. Nothing about this journey is easy. Be patient with yourself.

Kibbee

I am sorry to hear the sad news about your mom. I hope you will find joy in the memories of your time together, and peace knowing that you were a loving daughter and a constant advocate for her care and comfort.

BassetHoundAnn

Thank you everyone. Your care and condolences have truly lifted my spirits. I'm so grateful for all the kindness and shared wisdom of everyone here. I couldn't have gotten through the long battle without it. Thank you!