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

Thank you all for your thoughtful replies! I have been getting away a little more and hubby gets up to fetch his own refreshments more often.

He is not a veteran, so no help there. We do not qualify for Medicaid.

I would love to move! Not fond of this house at all, but the property is nice and we have good neighbors. Of course, moving would only mean MORE WORK for me...not ready to do that yet.

We had home health for about a month, it was after a hospital stay-- PT, OT and nurse-- and he was getting stronger/better so they discharged him from the program. (Medicare limit?) It was a relief to both of us when the visits stopped, honestly.

He is not on Hospice. We discussed it with one of his Dr's, who explained that Hospice would mean an end to his treatment and that without treatment he would die, (not "maybe" but "would definitely") in one, perhaps two months, due to the effects of hepatic encephalopathy which is currently under control.

He has stated that he does NOT desire liver transplant, even though he qualifies for the waiting list. This saddens me, but I understand and support his decision.

We have the legal documents in order: durable POA, advance directive, will. We've had many of those difficult conversations about end of life issues. I feel as though I've grieved his death already, in some ways.

So, thanks again for your suggestions! We're still here and still kickin'-- I just haven't had much computer time lately.

Dear Terrific Wife,
Does hubby have Primary Care Physician? He/She can write orders for physical therapy & then home health aide …does he have long term care insurance? Was he a veteran? If so, a caregiver can be sent. Don’t do 24/7 . You will get burnt out & sick. This help is for YOU. Please don’t do it without help. Hugs 🤗

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?

Edit: Sorry, I did see that you said no respite is available. Very sorry, OP.

amiabadwife: It is IMPERATIVE that you seek respite through any means possible, e.g. Visiting Angels, etc. Prayers and hugs. You are not a bad wife.

If your husband served in the military, contact your local VA office. They do offer 30 days respite per year either daytime hours or full days. I don't need day hours because a son lives with us and we trade off days so one of us can get out of the house once in a while. I, however, am requesting 10 days respite so I can take a break and visit friends out of state. Our son who is disabled isn't able to 100% care for his father.

Perhaps you could consider moving near the daycare or get tough and don't give him the choice to decline in home care since your sanity and good health is what makes you available to cater to him: make it a win-win situation.

The majority (probably) of us here have no respite care. Due to finances you may not be able to hire care, however take whatever you can get in the form of Medicare related paid care. It won't be much: weekly nurse visit, physical and occupational therapy. Have the hard conversation with hubby - you may not like these people in the home, but I. I, I need the help.

The PT and OT will be of benefit to him whether he likes it or not. He must attempt to keep himself as strong as possible (especially arms and legs) to help you help him - discuss with him. Explain the alternative - when you can't help me get you up, there will be no other way to do this job at home.

You may not get regular breaks, but time to talk to the son about coming so you can have a week here and there. 52 weeks in the year - if he does it 4 times, you're still doing the hard work for 48 weeks a year. If he can't come, can he afford to help his dad financially to pay for 24 hour in home care for your breaks. If he's not helping you now - is it because he's not a caregiver, not that close to dad, or because you did not specifically ask for a certain date(s) to take a break. Don't sit home getting angry because people didn't offer to help - some have to be asked. - Be prepared for the NO answer, too. Some people just won't do in home care for their loved ones.

Wish I could give you the name of an agency that will come in and give respite care, but they cost a lot of money and only those in very good financial shape can afford it. If he was military, you can check income limits to see if he qualifies for any of their help (they are pretty good benefits if income low enough).

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. 🙏

First you go and talk to an eldercare attorney and make sure all legal issues are in perfect order. Second, you tap with a financial advisor and see if finances will help place him or get you a caretaker to help. Third, you look into Medicaid and prepare to place him. Some people cannot be caretakers - and should not be - and what is happening to you tells me this is not something you should continue as it is causing you a great deal of harm. Good luck

I stay sane by focusing on one goal for myself at a time.
By trying to learn new things.

I read the news online and delve further into it to know what's going on in the world. I try to challenge my current political opinions by reading both sides and trying to understand how people think a certain way and why they think that way.

We've recently cut cable due to the cost. I've learned about streaming services and recently got a Roku and am learning all about it. Watching old shows that were on TV when I was a child.

I go outside and relax at least half and hour a day with my dog. We have a small enclosed patio.

When I get mail, usually a neighbor will chat for a bit. We talk about mundane things, like our yards, birds, weather etc. Quite relaxing.
(One neighbor wants to change my religion so I avoid her.)

Also putter around the house doing little projects. Painted the garage floor, organizing closets, decluttering. Going through old photos, papers.

I follow funny animal videos/sites on Facebook. (Have muted most of my friends, so I don't see their excessive bragging about their wealth, inheritences and travels.) Prefer the animal sites, and decorating sites. Love to read about vintage furniture/decorating and hope someday to live in another Victorian home.

I look online at Realtor sites and dream about the future. Maybe someday I'll move here, maybe someday I'll move there ... I like the uncertainty of it all, knowing that life may be totally different in a few years.

All in all - it's just a matter of having small goals that are achievable under the extreme circumstances that a 24/7 Caregiver lives under.

Edited to add: I have no respite. Ever.

And I'm physically disabled due to leg injuries from a few years ago. Use a Walker to walk, Wheelchair at times. Am in pain myself, & my health deteriorates physically due to Caregiving lifting, etc.

These are just my ways at trying to stay positive in a situation that I don't see any other option in. Trying my best to stay positive.
This site helps a great deal.

NO- You are not a bad wife, to answer your screen name.

If your husband is distrusting of outside help, I doubt he will like Adult daycares. Most people don't like strangers in their homes. So, the key is to change strangers into friends or relatives.

For my mother who had Alzheimer's, I introduced her caregiver as a friend/distant relative who came over just for a social visit and an quick outing. We repeated the visits and outings several times, each time longer. Then finally, my mom reluctantly agreed to go with the caregiver without me. Eventually, she got used to and liked her caregiver.

So, it's a process which may take a few weeks or longer, but it's doable.

You need to be able to get away and rest.

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.

First of all, you're not a bad wife, I'll think of you as Ami. I hear what you wrote echoing in my own head, this is a tough row to hoe, lady.
My only thought here is, after thinking it over for a while, to ask if he has trouble listening and comprehending what you say? Maybe you have trouble telling him? How about making a list of things you really need and showing it to him, leave it with him when you go for groceries? Talk about it again when you get home. Maybe he's just a taker, or maybe it has just not occurred to him that you are needing a little help yourself?
If I understand correctly his meds make him a little confused at times, but otherwise he is mentally alert; if so, ask him straight up if he wants you to be with him, or does he just want a worker bee? Not that you are leaving, but that you need a little help yourself.
My own DH is 6 years into dementia, I am 15 years older than you, it goes on and on. I think the idea of changing your routine and down-sizing your areas of concern is an excellent one. Take it a moment at a time, try to relax and make a list of what you really need, and also of what he really needs. These things change as you get into these situations. And as "gofore" suggests, a little white lie now and then might get you some relief.
God bless, stay the course and be well yourself.
((((hugs))))

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.

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.

Your husband probably has significant anxiety about being dependent on you or someone for help and about having serious and often scary health issues. You are his safety so he feels insecure when you are not with him. Could you put aside some money a little at a time toward a "day off?" Establish a relationship with a Home Health Agency so that when you want to " buy" yourself a day off, you can schedule an aide. Your husband may not like outside help as much as having you there, but tell him you love him and that you need a day to do things or to take a small road trip or whatever you choose to do and that "_______" will be there to get his lunch or watch tv with him or whatever he needs. It sounds like you are able to leave the house for short periods even now, but it would be good to have some arrangements in place for when your husband might have even greater needs.

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...

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.

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 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.

Tell him that you are bringing in aides to help you so that you can continue to help him. Tell him that during the time when he is with the aide, he is expected to remain civil about it so that this can work for both of you. If there is a true medical need or need for authorities during this time, then he can call 911, not you.

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!