How do you stay sane when there's no respite available?

I can certainly relate to your dilemma, as I took care of my husband for many years, and for the last 4 years of his life pretty much had to do everything for him.
It can be exhausting, which makes it very important that you get away for small periods as often as you can.
I would recommend getting some inexpensive security cameras(I used the Blink cameras)that have the two way talk, so when you're out and about you can check on him through your phone and if needed talk to him and let him know where you are and when you will be home.
Self care is one of the most important lessons that I learned in my caregiving journey, as we certainly can't care for our loved one(s) properly if we're not taking care of ourselves first.
So start taking some walks around your neighborhood, sit outside on the patio with a glass of wine or beverage of your choice and just enjoy God's beauty, go shopping, or to church, or lunch or supper with friends, and if need be DON'T answer your phone when he calls, instead you can check on him through your phone on the cameras.
And what actually saved my life was finding a local caregivers support group in my area(I just Googled local caregiver support groups)that I was able to go to weekly and discovered how incredibly helpful it was to be able to share with others who understood exactly what I was going through.
In fact my husband has been dead for a year and a half now, but I continue to join the group as it's now my turn to pay it forward and help others who are in the trenches.
Most might still be meeting on Zoom, but our local one is starting back up in person next week.
Please make yourself a priority, and if needed hire someone to come in several times a week to give you a break, despite what hubby thinks about that as he needs to understand the importance of you taking care of yourself and getting away occasionally.
I wish you the very best as you take this journey with the man you love. God bless you.

Call you set it up so you’ll be home “in 2 movies”? That should be good for 3 hours and he’s preoccupied.

I see a lot of posts about people getting care not wanting or trusting caregiver help. Reminds me of toddler tantrums to see who gets their way - the toddler or parents. The caregivers are caving to the tantrums so the person needing care never changes. I think Supernanny should come back with a for caregiver spin-off..

I am in a similar situation. My husband is semi-mobile but quite dependent. His short term memory is a challenge, too. He’d have me do every for him if I let him but he also wants control over his life. I understand that but I’m now insisting on checking to make sure he’s doing any financial processes correctly. I’m taking an active role in our business affairs.

To have some sense of personal time, I have clocks set up with the day and time so my husband has a way to track the day. I set up a white board with my schedule and time I will return. I do check in but set some boundaries on him calling me too frequently. I set up a medical alert system with a key in a lock box outside. I have a teacher Zoom a fitness routine with him twice a week. I go to his medical appointments but bring something to read so I’m not just wasting time. If it’s a longer appt, I go get the car washed or do a small errand.

I make sure I don’t completely lose social connections. I go to lunch with a friend and I get monthly massages. I set up an art area and have found online courses for painting and other crafts. I exercise regularly and find moments to focus on my needs. Otherwise, I’ll l totally burn out. I also work part time online so I have a purpose beyond being a caregiver.

I have a short trip planned for the fall and I’ve set up a group of people to step in. My husband wants me to be able to go. It’s a bit scary to attempt this short trip but I must do something for myself. I’m only 60 and my husband is older so he’s content to just be home. It’s important I don’t become a codependent martyr just because I love my husband.

We are all learning as we go and you are not a bad wife. My mother died from caring for my father. She made me promise to care for myself. It’s not easy but we caregivers matter and we must remember to love ourselves, too. I wish you all good things as you go. 🙏

My circumstance is very much like yours. I finally resorted to making a falsehood in telling my wife that unless we hire a professional caregiver to assist us; our health insurance provider was going to drop coverage. It worked and now all is well. She has accepted the caregiver, giving me 6 hrs a day, 4 days a week respite.

Check into respite care at a nursing home.

Is he on hospice or been evaluated for it? Medicare will pay for respite when someone is on hospice.

Is he on medicaid? Check their rules for respite care.

YES, you need a break and you ARE NOT a badwife. What you are doing is absolutely exhausting and stressful!

Good Morning,

Oftentimes what happens with the "patient/loved one" is that they become apathetic. They can't help it. They are really not even thinking of your needs. At least that's how it is with Dementia.

I've learned a lot when looking back and I am still in it. For example, prior to the Pandemic with all of the doctor's appointments I would sit and read magazines in the waiting room that were discussing Hollywood starlets divorces. One day I had an "ah-ha" moment. Why don't I do something constructive. Of course at the doctor's they want you to arrive 15 minutes early, you wait, wait, wait some more then you have 8 minutes to tell your story and they want you out the door.

Well, I decided to study a language and I put my pages of vocabulary words in my pocketbook and I review them at the doctors. I am actually learning a 2nd language. I'm getting pretty good at it too.

I splurged on a student violin with all the bells and whistles. I take online violin lessons and also 2x weekly I go to an indoor heated pool for an 1.5 hour at a time. This is my support group, my happy place. What women doesn't want to lose weight or tone up. I bought (2) bathing suits online at Lands End when they have their weekly Friday "On the Counter" markdowns for $12. Originally $125.

You are only in your 60's. Is there a YWCA in your neighborhood or a college athletic facility that you can join. Your situation could go on for a while with a loved one as is the case with mine but I am trying to take control of the things I can as you are doing by reaching out.

I love my mother dearly. I work remotely from home evenings when Mom is in bed. The first check I write is for my pension. As I do not want to be living on popcorn in my old age. I, too, don't buy anything unnecessary and have a coupon for everything.

If you don't already belong to a Church I suggest joining one. I am NOT a doctor or medical personnel but is your husband able to get any type of exercise. For example, my mother was pretty much in the same shoes as your husband--I had to do everything, wait on her but with physical therapy, occupational therapy and the right medication, Mom can now walk around in the supermarket. Why because I bought her an UpWalker Lite. You can also get similar models on Amazon. You can have your husband's Primary Care Doctor write a scrip for one. Some insurances will cover it. This is not the junky gray aluminum one's but a standup with handles, seat, brakes, portable to go into the trunk. People approach my mother all the time and ask her, what is that?

You are right to seek out advice because you may have to last awhile. I, too, don't know what's going to happen. I also feel like I am waiting for the other shoe to drop.

I have a camera that is centered on the door and a text/photo should anyone enter or should my mother leave the apartment. This has not happened but I did have this installed through my internet carrier. Mom also wears a life alert button.

Can you find a male health care CNA who can sit and watch a game with your husband? The men seem to like the men to discuss sports, plus they can lift your husband if need be.

I hope this is of some help to you. I have been in the trenches for quite some time now. I have even moved to a 1st floor, it had to be done. Railings around the toilet, the booster seats I think were causing UTI's. Men can get them too. A shot cranberry juice is helpful, if your doctor thinks this is advisable as you can't always mix certain meds with particular fruit juices.

A hospital bed with railings seemed to help Mom. Again get a scrip from PCP, most insurances will cover 80%.

You don't want your husband's muscle to atrophy. Vitamin D, fresh air, talking to the neighbors, etc. will help. As I write this the Eucharistic Minister visits every Sunday and brings Mom Communion and the Church Bulletin. A group of 9 people rotate every Sunday! Enough said...

It might be time to streamline the amount of work you have to do. Maybe consider a smaller home, no carpeting, small or no yard... so you have less work to do. Since you have a yard, create a she shed you can retreat to in your own backyard.

In addition to many wonderful responses, do you think he would qualify/benefit from at home PT? This may give you a little time to yourself at home and may get him used to someone else in the home. Then maybe? he would be more receptive to other help in the home.
Bottom line, you need to get time to get away sometimes, for your health.
We have caregivers for our Mom. It takes her a while to get used to someone new, but through their smiles and support, she eventually comes around and suddenly she is sad when they leave and wants to know when they're coming back!
Best wishes to you both.

First of all, when going to store or friends house, turn off your phone or refuse to answer. If this is the only time to get away then you're going to have to take advantage of it. For him to be dictating to you when you should be back, what you should be doing, not allowing people in to help, is just plain taking advantage of you, but we know his mind is not working right. Sounds like he's not helpless, you've let him become lazy because you're trying to be a good wife. Start giving him a couple of chores to do to get him out of the bed. Then add another core. Only you know what that core would be. If he refuses, then refuse to do something for him until he emerges from the bed. It might sound hard hearted but if you don't want to be caring for his every little whim, you've got to be the one in charge. Hire someone to do your yard work and stuff you can't or are not comfortable doing.
If you continue on down this path, he'll run you down. Stand your ground because if he's run you down, who will take care of him? Who will take care of YOU? Then you'll need to put him in a care facility, which might be the best answer for you. Good luck and stop wondering if you're a good wife. YOU'RE A GOOD WIFE! Hugs to you.

Gosh you must be so exhausted. Yes you need a break. Not just physically, but mentally.

That anxious "where are you" behaviour wears a person down. Not sure if that is something you could discuss with his Doc? (Don't want to be a pill pusher, but a little something for his nerves may help).

You will need outside help.

"Husband is distrustful of outside help coming to our house; didn't like it.."

Well he may not *like* but
1. The help is for YOU, to help you care for him. So he does NOT get to refuse.
2. He will get used to it. Most do.
3. Refusal of in-home care means he will move into care much much faster.

I would arrange that in-home care asap. Try a few aides & keep the favorites.

Hopefully your stress starts to come down.

Then some thinking time... Do you still want to be living where you do for another 5 years? Does your town/area suit how you want to live going forward?