@deek15redpeppers Sending you a gentle hug, right now!

@IndianaScott has posted about the long-term caregiving he had with his wife health struggle, and I would invite him to respond to you.

My dad took care of my mother by himself for 10 years with her slide into dementia and Alzheimer's Disease. It wasn't until her last two weeks that she was admitted to the hospital, when she refused to eat. For her, she never said "thank you" to him either, and criticized him relentlessly until the diseases rendered her mute and unspeaking.

It's important that you know you are doing the best you can for her. Does the hospice group you are associated with offer any caregiver groups, either online or in person? Letting her comments "roll off your back like water off a duck's back" sounds really easy, but certainly not easy to attain, is it? And, to be clear, it isn't whining from you. You are exhausted, doing all you can to help your spouse, and you need to take care of you, too. She may have been a source of great comfort and mutual care at many times in these last 57 years, and now things are different. Would she understand if you told her how her treatment of you makes you feel? I sincerely hope the aide situation works out.
Ginger

Hello, @deek15redpeppers Nice to have you back! Not sure if you remember me, but I'm Scott, and I was my wife's caregiver during the 14+ years of her war with brain cancer. You're absolutely correct that 24/7 caregiving is a very challenging and incredibly difficult grind. Good to read you have night help! We were unable to afford help until my wife got her prescription for home hospice care.

My wife, too, would often lash out at me and it was always hard to take. I did raise this question with her neuro-oncologist and he said, as you did, it is the disease talking. I always reminded myself of that, but it sure still hurt a lot at times. Don't know if it helps, but her doc also told me it is very common for patients to lash out at the person they feel the closest to, and safest with. Odd to me at first, but then I understood it. My wife felt safest and most loved by me, so she could let her frustrations anger show, knowing, in her heart, I'd hang in there with her.

While I know each patient, their journey, disease, and caregiver are unique, one thing that I decided early on was to not go off into the future with my wife. She knew her future was uncertain and dark, so my talking about future possibilities only darken her thinking. So while I often thought of "what should I do in the future if..." I'd keep it to myself. In my wife's, case all she wanted was to know I was there for her and that was what helped her better maintain her calm. I realized that I was better off not even mentioning things that I was planning to do at home, like "I'll change the bed tomorrow", or "let's call the kids on Saturday". It was better if I just asked "want to do....whatever...at the time.

We, too, had a Hoyer lift and my wife hated to even see it! Again, it was a reminder of what she could no longer do and at one time she did tell me my having to use it made her feel guilty that she was such a burden. I had to keep ours in the garage and wheel it in when needed. I made the decision to change to an adjustable hospital bed to be able to move her from bed to wheelchair without the lift. I did this with her nurse being the one who made the suggestion 'for her comfort' so I wasn't the bad guy. She still hated the lift, but we used it less often,

I will be hoping your night help works out for you and her!

Strength, Courage, & Peace

You are not alone. I do not even think people would believe the things I have seen and heard.

So sorry to hear of your present situation, @deek15redpeppers. My husband has Alzheimer's Disease and broke his hip two months ago. Immediately after the surgery and for a week thereafter, he called me to come and take him home immediately, everyday. I always told him I couldn't. I was afraid if I told him I would pick him up that would be the one thing he would remember. Eventually, he settled down and understood that he had to stay in the care home for a while. I am fortunate in that my husband shows a lot of appreciation for what I do for him, and he does not need a lot of "skilled care" at this time. His requests are few, so I can carve out pieces of the day to work on projects, exercise, destress etc. I hope the aides at night work out for you. It's hard to be the one who has to take all the hurtful comments in, without responding in kind, and I give you credit for all you are doing for your wife. Just remember, you are not alone and this is a caring community. Many people here have experienced what you are, can empathize with you and act as guides through this difficult time.