I need to take a breather

GothicGremlin

I usually stop in on the site once every couple of days even if I don't post. But I think I need a week or so to regroup - and make plans.

Today I got news from hospice that just smacked me in the head. The care manager told me that if Peggy keeps on her current trajectory (not eating, drinking very little), she has weeks, maybe a month left. 🙁 I guess I'm not all that surprised given everything, but I did not want to hear this. I wish things were different, but they aren't, and I accept it, of course.

And of course the kicker is I don't even know how to think about this. In those moments when Peggy has clarity, she's unhappy and she's afraid. She knows the road she's on. Do I wish her a speedy end? Do I want her to rally? Do I wish for her to stay as long as possible? I don't want her to suffer, and there are moments when she very clearly is.

So I need to get myself together, make plans, get people to visit (if they want), and process this enough so that when I'm there with Peggy, I can comfort her as best I can.

Think good thoughts.

BassetHoundAnn

I'm so sorry, GothicGremlin. So very sorry. You've expressed so succinctly my own fears and apprehensions--and yes, terrors--about what each day holds for my mother who is also in stage 7. Know that you are an amazing sister. I have great admiration for all that you are and have been to your sister. No woman could be a better sister. Hugs to you both.

M1

Will be thinking about both of you. Let us know when you can. Wishing you courage and strength.

Quilting brings calm

I’m so sorry to hear this. It’s one thing to mentally think that a person’s time is running short. It’s another thing entirely to have a medical professional say it out loud.

harshedbuzz

I'm sorry for the place in which you find yourself.

It's one thing to know this in head-- it's another to know it in your heart.

I'm wishing strength and peace in the days to come.

HB

ButterflyWings

(((GG))) Thinking of you and Peggy.

I know that if it were me, I would want to go sooner rather than later. This experience has made me think about how to put those wishes in writing so my kids will not have any question or guilty feelings about letting me go at the earliest opportunity should dementia and its complications show up.

I want the same for DH as we navigate this awful disease yet I've saved him from choking to death twice now including just last month. My CPR and First Aid training just kicks in and I jump into action. But also, he is obviously suffering and in serious distress at that moment, so I act quickly to relieve his short term suffering only to essentially put him back on the road of Stage 7 Alz. Makes me question my own sanity really, and also causes me to rethink which action is really more compassionate..."saving him" in an emergency...or not...?

You are wise to create some space to think through what you've been told by her team, and what to do. These matters are so complex. My heart goes out to you.

forbarbara

I hope you can find stillness and balance in the coming weeks. Wishing you strength.

Jeanne C.

GG, I think of you and Peggy often. I'm glad she has you in her corner. Take care of yourself., too. Sending you positivity, strength, and peace. ~ Jeanne

MN Chickadee

I'm sorry. Those last weeks are so hard. They are both endlessly long and also fly by at the same time. Cherish your time with her and don't be afraid of the drugs hospice offers. You won't cause anything or hasten anything that wasn't already meant to be, just do whatever you can to make her comfortable particularly her anxiety and fear. Make sure you rest and eat and go for walks. This last phase is a marathon, not a sprint and you can body can get bogged down quickly with much more distance to go.

SusanB-dil

GG - Other than what's been posted, just ((hugs)) ...

Phoenix1966

Hoping you are able to continue to tap into the incredible amount of strength you have during this time of transition. And I sincerely hope your beloved sister can let go of her fears as she is surrounded by your love and devotion.

Emily 123

It’s a lot to handle, GG. My prayers are with you both. I think of you and Peggy often. You’ve been a constant cheerleader and advocate for her, and she’s blessed to have you. I’m so sorry you both have to walk this path, but glad that she has you with her as her North Star.

JeriLynn66

GG, holding you and Peggy close in prayer during this difficult time. You’re the best sister ever ❤️

Anonymousjpl123

Wishing all good thoughts and lighting a candle for you and Peggy tonight. I know it’s indescribable but glad you are there for her. She’s not alone and you aren’t either.

Jgirl57

Big big hugs as you process the hospice information. Deep breath…., exhale. You got this GG

Beachfan

GG,

I’m sorry to read of this most recent update, although we are all aware of the inevitable. You have been such a rock for Peggy; I don’t know that I would have been so strong. The time of transition is heartbreaking, regardless of how long or brief it is. Your situation is so much more difficult because at times, Peggy is aware, afraid and unhappy. I was spared that agony when I lost DH; probably a blessing. I am praying for both of you; mainly for peace for both of you. Stay strong.🙏🏻🙏🏻🙏🏻

GothicGremlin

Thank you, all of you.

I'm back, have my act together, and have been able to take care of a few things, so now I can focus on Peggy.

Oddly, she still knows who I am. She even teased me about my purple hair the other day. Then, Peggy being Peggy, told me how much she liked it.

@BassetHoundAnn I don't think those fears will go away. The thing I know though is that we're all doing the best we can to take care of our loved ones.

Thank you, @M1 I wish the same for you.

@MN Chickadee I keep reminding myself that this is a marathon ... taking breaks helps a lot.

@ButterflyWings I'm thinking the same things ... Much as I will miss her, I hope she doesn't linger too long. She's very clearly not happy, sometimes just miserable, and I've never wanted that for her.

Thank you @Beachfan I really appreciate it. And, I'll just add that as I read along about your journey with your DH, you were that strong. You took such good care of your DH.

@Quilting brings calm & @harshedbuzz yes, that's exactly it.

@forbarbara & @Jeanne C. thank you, both of you.

@SusanB-dil thank you.

@Phoenix1966 thank you. Peggy's got so many in her corner. Just this last week two of the memory care caregivers talked to me about how much they like Peggy and are so sorry that this is happening to her. So at least I know when I'm not there or her friend M isn't there, she's got some caregivers there who are really looking out for her.

Thank you @Emily 123

@JeriLynn66 Thank you. I'm doing the very best I can. ❤️

@Anonymousjpl123 Thank you so much for that.

@Jgirl57 In this moment right now, I think I do have it - who knows where I'll be in an hour. 🙂

times2

Hugs and prayers for you as you travel down what seems to be the last leg of your journey.

GothicGremlin

Thanks @times2 It kind of feels that way. Who really knows though. She could decide to start eating and drinking more and be with us for several more months. What seems more likely though is that she won't.

In my heart of hearts I think her not eating is intentional, and several others think the same. I think she really means it when she says "I can't do this anymore."

boogerbear

I wish I had know the future but my DH died peacefully and I know he is not suffering. It was hard knowing that he would not make it after he stopped eating and drinking. Sure miss my friend and husband.

times2

https://alzconnected.org/discussion/comment/197828#Comment_197828

Have you given her permission to let go? Let her know it’s okay. Some people need that reassurance that their loved ones will be okay if they leave..

GothicGremlin

@times2

I did. It was one of the hardest things I've ever had to say to anyone, ever. I told her that if she doesn't want to eat anymore, it's okay, and that I support her 100% in whatever she decides to do. I also told her that I'm fine, our brother is fine, her best friend in the world (M) is fine, and that she doesn't have to worry about us.

Last week really was a bear.

And her best friend, M, is most definitely not fine. When I told him everything the hospice nurse told me about Peggy's time left (as gently as I could), he was in tears. I felt like I'd kicked a puppy on purpose. He's told me in the past that he wants to know everything, and he wanted to know this too, but man, this was hard.

jfkoc

Our hearts are with you...please update when you can....

vtech1951

part of me is jealous..why? our family member with dementia is stage 7 and all she wants to do is eat! she yells and screams all day!! I am just waiting for the day when the care giver says she did not eat today as this is a sign of declining, but that day has not come, this has been going on for more than a year, she has no life, and our life is upside down, again this has been going on for OVER A YEAR!

GWB

🙏

ButterflyWings

https://alzconnected.org/discussion/comment/198047#Comment_198047

Is she receiving any medications to help with this? By any chance is she in hospice care (whether at home or in a facility)? I ask because their main focus is comfort and I believe they would keep adjusting her meds to relieve the yelling and screaming. That sounds like agitation or pain, or something is triggering it and that troubling behavior is the only way your LO can communicate her discomfort. @GothicGremlin 's sister had a similar issue that I believe has since been managed with med adjustments.

Also, my DH was kicked off hospice before, for gaining weight. He would eat until his stomach hurt, because he has leptin resistance, a condition that some PWDs have, that can't tell when they are full. Also, now he is early Stage 7 and hyper oral - meaning he will put anything in his mouth (like infants or young toddlers) even inedible objects. So, of course food if offered or seen in arm's reach, is going in the mouth. I say this to say, very sorry but it is possible you may never get that update from the caregiver that "she did not eat today".

https://neura.edu.au/news-media/media-releases/researchers-pinpoint-overeating-dementia-brain

https://my.clevelandclinic.org/health/articles/22446-leptin

At least if you can get the meds adjusted, everyone will get relief.

vtech1951

https://alzconnected.org/discussion/comment/198182#Comment_198182

yes she is in hospice, she is 85 years old and is seen once a week by the nurse, she is coming on 4th hospice renewel!! except for the mind she is most likely the healththiest 85 year old you will ever meet (lucky us) meds have been prescribed they only seem to curb the screaming but dont stop it, she is bedbound, needs changing constantly, beyond conversation, but full of energy and wants to eat eat eat!

GothicGremlin

I can't speak to the constant eating issue, @vtech1951 , but @ButterflyWings is remembering correctly - my sister screamed constantly (very likely the hallucinations), and hospice kept adjusting her meds. She's on seroqeul and depacote (not sure if I'm spelling those correctly), and they've been a big help. No more screaming, and she looks ... untroubled? It's nice to see her not look so stressed.

For My Sister

Hi GothicGremlin.

i contacted you privately once before. My younger sister Nancy is in exactly the same position as your Peggy. She’s been in Memory Care for the past two years, and has continued to decline over that time. She is now bedridden, and her eat and drinking has begun to slow down. Hospice does their best to keep her comfortable. Fortunately, she still knows me, and we share nice moments. But most of the time she is in her own Alzheimer world, speaking to someone who seems to be located on the ceiling above her. And as much as I love my Nancy and don’t want to lose her, I want her to be her happy self again, and the only way for that to happen is for her to be in heaven. I will be broken when she has to go, but I know then the suffering will be over, and she will be in a better place. Wishing peace to you and Peggy.

GothicGremlin

Hi @For My Sister Yes, of course, I remember - and thank you. I wish you the same.

Eerie how Nancy and Peggy have such parallel journeys. Your description of Nancy could be me discussing Peggy, in every way. And I feel much the same as you do - I don't want Peggy to leave, and yet, I don't wish this existence on her either.

Peggy just became bedridden earlier this week. Another tough milestone.

There are still little moments of joy though. Today I was there with her best friend from high school, J. I was sitting on the edge of the bed and J came and hovered very close to me. She looked at Peggy and said "Look! Me and your sister are twins!" Peggy looked at us like we were nuts and started laughing. J and I look nothing like each other. It was funny and she got the joke. I'll take it! 🙂

mommyandme (m&m)

Those moments of joy carry us, thank you for sharing!