Not a good day, steeling myself

M1 · July 5

My partner hasn't had a bath in a week and she is only eating if I'm there to feed her. She was very combative about a bath yesterday and wouldn't even let me help her get clean clothes on, so i left her standing half naked in her bathroom. I did tell one of the aides what a state she was in.

I think I need to let both of these things go more. She won't let any of the aides help her, so i am pretty sure my stepping back will hasten the end. But maybe that's what needs to happen now. Hard choices.

Anna2022 · July 5

I'm so sorry this is so very hard. God speed to you both.

Beachfan · July 5

M1,

I have no advice- only empathy. I am sorry that you, and so many others, have such struggles day in and day out. You’ve gone above and beyond for so long, you really need to do what’s mentally healthy for you; no sense in going down with the ship. She will figure it out, or she won’t, but you need to worry about you. The MC staff has undoubtedly dealt with all these behaviors before; they will figure it out; it’s all in a day’s work. Enjoy your beautiful farm, quiet summer evenings and find peace. Trust me, this hell on earth will not last forever. 💕💕

mrahope · July 5

Not just hard, desperately hard @M1 . It's beyond sad when folks make it so hard to help them. Perhaps it is the only way. I'm so sorry it has to be this painful.

fmb · July 5

M1, I am so sorry that you and she are going through this nightmare. It seems to me that especially by not eating, she is sending signals that she is nearing the end of her journey. I, too, have been struggling with stepping back as my DH gets closer to the end, running myself ragged trying to tend to every aspect of his care in the ALF. As my friend and fellow caregiver told me a couple of days ago, he is going to die, and there isn't a damn thing I can do about it. Going forward, I am trying to keep his care priorities to safety, whatever level of cleanliness is reasonably attainable, and keeping him relatively comfortable. Stepping back is not hastening the end. Our loved ones' journeys will end when it is time regardless of what we do.

Arrowhead · July 5

I don't know how the staff at memory care manages to get my wife changed, dressed, or bathed. At home it was always a fight. The other day I got there after lunch, and she had spilled food on her blouse. I tried to get it off of her so I could put on a clean one, but she would not let me. I miss not having her at home, but not the constant struggle.

wose · July 5

It’s probably so scary for her, but for you it’s gut wrenching sad. Being the kind, compassionate and loving human you are makes those hard decisions seem impossible. You’ve been a beacon of light with all your sage advice on this forum, I only wish I had some of that for you. Both of you will continue to be in my thoughts and prayers💜

ButterflyWings · July 5

(((@M1)))

ButterflyWings · July 5

Dear Friend - I will say again for the folks that don't know already, that DH has not bathed in years. Literally. A quick sponging off/wipe of the hot spots suffices and he smells fine, has no skin breakdown or infections, and requires minimal personal care in that regard. Whether from me or the aide, or CNA. No shower or bath? Its OK. Same shirt 2-3 days in a row? Possibly. Its OK.

I do put a "bib" on him sometimes depending on what he's eating and if he is feeding himself which is prone to spills. But otherwise, he's not going out or to the office, so who cares if he actually bathes or showers as long as he is wiped down, lotioned up, and undergarments are changed frequently? That has saved my sanity.

Not eating is something else entirely and if the appetite change is not medication related, I agree it may be progression and her body's way of helping move another step toward the inevitable. Hard as it is to let it ride, I think we have to. I pray for his release and relief and then coax him with foods that can help slow the recent steady weight loss. Mixed messages to myself, I know, but there it is. Yes, it helps provide more quality of life while he declines and also hopefully minimizes his suffering, but it also prolongs the downward spiral perhaps. I completely understand what you are going through.

Hugs.

trottingalong · July 5

https://alzconnected.org/discussion/69779/not-a-good-day-steeling-myself

I am sorry you are going through this. Difficult decisions. For your own health and well being, stepping back may be a good choice.

Whyzit2 · July 5

M1 my ❤️ aches for you.

Quilting brings calm · July 5

@M1

I second what fmb posted. Nothing you do or don’t do is going to change the outcome. If something starts upsetting her, then do exactly what you did. Stop, tell the staff, and leave. She will calm down quicker that way. I’m so sorry that it’s like this. Just adds stress upon stress.

jfkoc · July 5

please keep us updated…..

Mint · July 5

I’m very sorry M1

Know these are difficult decisions to make

psg712 · July 5

M1 I am so sad for you. Your advice has helped me to understand and cope with my mom's decline so many times. I wish I could give back something that would help you and your partner. Love to you both.

fmb · July 5

https://alzconnected.org/discussion/comment/214873#Comment_214873

Another way to look at it is to think in terms of her comfort. Especially in the late stages, we often tend to think only in terms of physical comfort, but especially for a PWD, emotional comfort is just as important. As hard as it is for you to see her upset and agitated, it must be even harder for her to feel that way. As QBC said, stop, tell the staff, and leave…and do NOT feel guilty. Praying for you both. ((Hugs))

Dio · July 5

M1, there are truly no words to comfort you! Please know that you've done everything possible for your wife throughout your journey caring for her.

fesk · July 5

M1, you are both in my thoughts.

Jo C. · July 5

I am thinking of you, M1. You are doing the very best that can be under the circumstances with the challenges that exist. Sending you a hug to put in your pocket to take out when you need one.

J.

Jgirl57 · July 6

Sending my hugs to add to everyone else’s ….

GothicGremlin · July 6

I'm so sorry @M1

I don't have any wise advice to offer, only that I empathize with you, as I've been down this path … Peggy's friend M and I tried everything we could think of to get Peggy to eat. Sometimes we got a small win, but mostly we failed. Like @ButterflyWings said, it's probably the progression at this point, and unfortunately, there's not a lot that can be done.

As for bathing, when Peggy was in later stage 6 and stage 7, she also refused to shower. Bed baths were the answer (for her). Kind of like a thorough wipe down. She protested some, but not a lot.

You're both in my thoughts.

ImMaggieMae · July 6

M1, I’m sorry this is so difficult for you. You’re doing the best you can, and leaving when you did sounds like the only thing you could do in this situation. Bed baths, even a little at a time can be effective when she is in a more cooperative mood. I usually try to get my DH into the shower right after toileting in the morning when he’s still half asleep. Any other time lately, he’s opening and closing the shower door, repeatedly sitting and standing. He’s like a moving target, trying to clean one area at a time. It’s easier just to clean exposed skin with a soft cloth or wet wipe whenever the opportunity presents itself when he’s doing something else.
Thoughts and prayers for both of you.

Joe C. · July 6

M1, I wish I had some advice to offer but unfortunately I do not. I will keep you in my thoughts and prayers.

AnderK · July 6

M1. Our hearts break a little bit more at each decline in our loved one. Sometimes all we can do is say to ourselves that we are doing the best we can, that it is not our fault, it is not their fault either. My heart is with you across the miles. ❤️ Kathy

CindyBum · July 6

{{{M1}}}

Thinking of you and your love.

xoxo

Buggytoo · July 6

Such a difficult journey! I wish you both a gentle time together before the end of her life.

Rocky2 · July 6

M1,

IME, the closer DW got to the end of her journey, the more gut wrenching it felt for me. I too agree with the thoughts posted by fmb. I empathize with your struggles as you walk this extremely difficult part of the path with your beloved partner. You continue to be in my prayers.

Tom

White Crane · July 6

Dear M1, sometimes you just have to walk away. Not forever but for a time. Like others have said, they will figure it out. DH now has an unkempt beard that he won't let me or the aids touch. He won't let anyone shave him nor will he try to shave himself. He doubled up his fist at the nurse the other day. He only eats one or sometimes two meals a day. I can't control any of this. It hurts my heart but the nurse assured me that she has dealt with this before. I have had to walk away from it and let the MC staff take care of him. He isn't as far along as your partner but is advancing. I wish I could change things for you…and for myself. Please take good care of you. You have had a long journey and need to rest and find some peace. Sending hugs and prayers.

Brenda

Jeanne C. · July 6

Peace, comfort, and strength to you both.

ghphotog · July 6

I'm sorry M1. I understand partly where you are at. Who knows if stepping back will hasten her decline but I would think it probably would. If the aides can't feed, change or bathe her it could happen sooner than later I would think.
This is such a long drawn out struggle. We truly feel where you are.
My DW is becoming the same way. The MC says she doesn't eat much and wont' eat at all if she doesn't have help so the aides have to hand feed her but she gets irritated at them coaxing her to eat. She falls out of bed a lot so I bought a very cushy crash pad and that has helped prevent injury but it's just a matter of time before she falls again from a standing position. God I would hate to see her break something and be in that much pain.
When I'm there all she does cry and tell me to never leave her, that she wan'ts to be with me forever.
So heartbreaking to see her this way and it only gets worse. There's no remission, there's no getting better only worse.

mpang123 · July 6

I am impressed with the outpouring support from so many people. You are a very special and influential person.

Not a good day, steeling myself

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