Caregiving: I’m frustrated and exhausted.

Wow! You have a tremendous load, as does your husband. I am so happy to hear that the two of you were able to undertake raising two very challenged children - I have just a little understanding of what you have been through, after watching my brother raise his autistic grandson and continuing to support him into adulthood. I am especially familiar with the lack of executive function. May I ask if you live in a metropolitan area? Now that Covid is beginning to relax its grip, you might be able to find some community support yo relieve your 24/7 burden.

I am sure your kids have received special services in school, does the support staff have any suggestion of resources for you? Also, do you have an animal humane society or rescue in your area that could interest your daughter? Finally, can you qualify for weekly respite care for a few hours so that you can get out of the house alone?
If nothing else, you have found a place with others facing your situation, who can offer a listening ear.
Sue

Rosemary, thank you! I will read all the info for sure! My fiancé does live with me know, no way he could be alone! I go, arrange, do all the talking, meds, and daily care for him. Everything! We went from sweet intimacy to me having to change his diaper all within two weeks! He is doing better now, MELD score from 38 to 22! But he does nothing for himself, which he could! He does it for OT and PT, but not for me! I’m a retired RN, and aware of what my expectations of a good caregiver is, and I am a very good one. But no help from his family, no help or gratitude from him. It’s frustrating and wearing me out. But he has absolutely no one else. It puts a lot of pressure on me when I’m very sick myself.

Thanks for answering. We live right next to Detroit, Warren. It’s the 2nd largest city in Michigan! We have a local FASD support group that I’ve been running since March 2020. I think we’ve met about 5 times! LOL! 😂

A friend has offered me 2 nights at her farm Airbnb. It’s right after our vacation, so I WILL need the rest/clear my brain. Being with Callie & her kids, and Mark too. It will be wonderful.

Tho there IS respite available, the Michigan heal & human services is so overwhelmed, there’s no respite available for more than a year.🙁

I take things one day at a time. The other 3 can run circles around me, they can make dinners. But I really need to go grocery shopping with them! I’m supposed to be eating more veggies, fruit, fewer carbs, some fish. I write these things on the list each week. They come home with very little that I asked for. Reason, it’s too expensive. Ok, but I’m trying to eat HEALTHY foods. 🤷🏼‍♀️🤷🏼‍♀️

We did a photo shoot on December 24 in Mint Hill, NC. The rest of the family lives there. They used to all be up here in Michigan.
Laurel

Good morning Laurel, I am glad to hear that you do have help! No one would guess from looking at your family photo what challenges you face "behind the scenes".
I do have a few suggestions about the groceries - a new & learned behavior since Covid - order on line for the family to pick up. Using the on-line order service, you can see the prices and evaluate. Second - Send them to Aldi! We use ours for most grocery items and even a few paper goods. Bonus - no "stuff" to tempt like Target. Finally, frozen fruits and veggies are the nutritional equivalent of fresh, but are processed in season so often cheaper than fresh. We use the berries & many veggies frozen when out of season. Frozen berries work great stirred into yogurt as a meal, snack or dessert for the whole family. It would even be a treat you can teach the kids to make.
Maybe someone can co-run the FASD group to take a load off you? Just thinking out loud here - I understand the struggle you have - as a teen, I did respite for 3 families with very challenging children - only we called it babysitting then. Have you thought of contacting a local college or nursing school for a student to help?
Hoping you have some smiles amid the toil,
Sue

We LOVE Aldi! I much prefer it to Kroger. Things are fresh & have better prices. I like to go in the middle of the day, when all the old ladies slowly wander the aisles! Husband wants to go with me so I don’t put Bad Stuff in the cart! He can have his chips & dip. I get my humus & carrots or celery. I love filling the cart, husband glaring at me for 2 last minute additions…and it’s still under what he estimated! 😆😆😆 the 2 adult kids & I like to do the Gotcha dad! dance around him. 😂😂 we have fun & very silly times, especially with my mishearing! Even with my hearing aid on, my ear is getting worse & I’ve rubbed the S/number off the bottom of the hearing aid case, so I can’t connect with the Phonak app to raise my volumes or have programs. I don’t use my BAHA as much. It enjoys squealing through the bone conduction!. That a strange sound&&plain loud squealing in the center of my brain! And you can’t describe it to anyone! Yes, it’s in the center of my head. Very weird. So, mom has her ear and vertigo jokes, dad is getting fat jokes because he has kicked me out to the recliners to sleep on! He’s taking up the entire queen bed. And these 3bed room ranches built in the early 1962 have very tiny rooms by today’s standards. Can’t fit a king size bed in any bedroom; 8x10, 10x10 and 10x12, with a 5x9 bathroom. 😆😆

First photo is me & Steve together now/Christmas Eve 2021. Second is looking across from the middle of the kitchen at our very crowded front room. I’d like to move the fish tanks for room, but they don’t budge! So it gets covered by everything till a couple days before friends come over!

I haven't taken time to log on for many weeks - or even months, but I need to vent . My spouse has renal cell carcinoma with mets to the lungs, sternum, lower spine and sacrum. Mayo Rochester discharged her 2/14/22 directly to the car to the airport to Phoenix to be in the care of hospice. We are snowbirds and this is where she wanted to be, for sunshine, warmth and our many friends to support us.
Her pain is under good control, but her mobility is up and down, so we have a hoyer lift to use when she can't stand. I have to ask friends to help me use it, as she is heavy and the lift doesn't move well on the carpet. She criticizes me because I can't do it alone, even though she was a nurse and knows the safety issues of using a lift. I also push her around our RV park in the wheelchair, including up to the handicapped shower by the pool. I never hear any appreciation for my efforts unless I specifically ask for a thank you!
I am tired of 24/7 caregiving, as she doesn't sleep much at night and refuses to take sleeping pills. Friends have volunteered to do the night watch but as of last night we have hired an aide for 3 nights a week. I'm hoping and praying it will work out. The cancer is supposedly slow growing and we have no idea of any timelines. I can't imagine doing this for years, as some caregivers have done....

What bothers me most is her attitude of late - She told me in all seriousness that if I put her in a care center, that will be the last time I see her. We have been best friends for 57 years, partners for 25 and married for 8. I can't get her to understand that I would only put her in a facility if I absolutely couldn't physically take care of her and the medical providers say I must. Does anyone else have a spouse threatening such awful things? Friends say it's her anger at the disease, but it get directed at me and it really hurts.

Okay, enough whining from me. Thanks for listening.

@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

I too, am caring for my spouse who never, and I mean never, says thank you without prompting to do so. It is really difficult to feel unappreciated for all I do. It is especially difficult to take when I am tired. The only thing that helps me is to believe (and sometimes pretend) I am doing it for Jesus. If I am helping him as if he were Jesus (because this is what Jesus would want me to do) I feel very loved and at peace. I'm not always successful at doing this, and when I'm not, I get angry and miserable. It helps to talk to someone, or vent when needed with someone that understands. Take care of yourself and try to get plenty of sleep. I wish you well. You have a tough job. And know, that even though she doesn't say it, I'm sure she is thankful for all that you do.

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