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My husband’s mother was diagnosed with Alzheimer’s about 5 years ago and has lived with us in our home now for over a year and a half. I am her main caregiver, as my husband works a full time job. We are also raising two of our grandchildren ages 12 and 13. We had to get ADT system because of her getting out in the night. She hides things, asks to go “home” daily. Now thinks my husband is her baby brother. We have nurse that comes twice weekly and aide that helps with bathing twice a week. She needs 24 hour care, can still feed herself and go to the restroom. We take care of all her medications daily. She had pneumonia and UTI 6 months ago, pulled through and now walks with walker (when constantly reminded to use it) Has had quite a few falls. There is a lot more confusion from lack of sleep. She is often up rambling throughout the house all night. She does not sleep at night. She is taking trazadone. I’ve had to stay on the couch in the living room to watch that she doesn’t fall and hurt herself. My biggest fear is breaking a hip. I am getting physically and mentally exhausted and have thought of using the hospice respite care facility for a short getaway to Gatlinburg to use our Timeshare, which we had to forfeit and not use for the last year and a half. I want to look into a good respite facility, but my husband is not interested in taking her to a respite facility. We know the confusion involved with any changes. Has anyone used hospice respite 5 days and if so, what were your experience?

We have never used respite care for my mother, but from reading others' experiences, it sounds like they vary quite a bit. A lot of researching should be done in your area. However, I agree that YOU need a break. If your husband will not agree to respite care, then YOU go, and HE stays with his mom. Take a friend with you and go places. Do not allow any guilt phone calls to reach your ears. One thing that truly bothers me is that "being a homemaker/mother/caregiver" is seen as not a real job but a natural duty that is treated as not as hard or as worthy as a paid job. The stress from these jobs is big-time and YOU need to take care of yourself, and YOU need to treat yourself. I am wondering if your husband even gets this. You are a wonderful person for taking care of his mother so well, as well as your grandchildren, and your husband should be treating you to a big get-away, as well as thanking you daily for sacrificing so much of your life to his mother and your grandchildren. BTW, he should be sleeping on the couch part of the time, IMO, so you can get some proper rest. You are BOTH working hard, whether you get paid or not. God bless you. I am a 74-year-old caregiver to her 95-year-old mother and I say you are superwoman. And all people (still, most are women) who hold down a full-time job outside the home as well as being parents/caregivers/homemakers are superheroes. Even superheroes need breaks - sometimes a lot of breaks. Good luck and lots of respect from me.
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Reply to asfastas1can
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If your husband isn’t okay with MIL being in respite care while the two of you have a vacation, husband should stay home with his mom while you and others of your choice enjoy a much-needed getaway to Gatlinburg.

You’re doing most of the heavy lifting in caring for his mom. You are exhausted and worn out.

My first thought when I read your post was, “How dare he!” It is unconscionable of him to deny you what you need to stay mentally healthy.
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Reply to Fawnby
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TouchMatters Mar 17, 2024
This woman needs to develop a support network.
Friends, church associates, a therapist.
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I recently used a local very large and recommended facility for a 9 day respite stay for my wife so that I could attend a family event. I have been a full time care giver for 14 years and have done it alone and have never left my wife in a facility for a respite period.

my wife lost 4% of her body weight and became dehydrated despite of her Dr’s certification noting she needed assistance with nutrition and fluids. I spent 25 minutes with their physician who supervises the skilled care section of their facility and a prepared document which I included as part of her admission and meeting with their physician and for his use.

i will never leave her in a facility again. If travel is required I will take her with me even though there is a significant amount of work is required.

Her stay was private pay (and not cheap) and now I am challenging miscellaneous billings after her discharge. Examples; billed for a box of gloves (150 gloves) on first day and another box on day 3. Billed for a dedicated wheelchair and she never left the room (I admitted and discharged her in her power chair). Billed for blood labs on day one inspite of their policy not to do labs on respite care patients. Blood labs were performed on day 8 which were submitted to and paid by our insurance. Billed for medications and iv fluids to address dehydration due to their negligence.

i informed her primary care physician and neurologist that I would not recommend them referring facilities to this facility.
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AnitaGjen Mar 20, 2024
I hope that you will file a complaint with your state's office that regulates such "care". People need to know about these facilities - esp as hedge funds have taken over many of them.
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Yes,,,I used respite and will every 60 days for my sanity!! Medicare pays for it as well as the transportation to and from. Your husband needs to be considerate of your burden for His Mom. She may regress a little but she will anyway. Take care of yourself @
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Reply to Cruiseforever
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A friend of mine used the Hospice Respite and she went to visit her mom who was just put on Hospice. So I can't say she had a good time.....
Her husband was well cared for. He was at the Hospice In Patient Unit. Now he had "complaints" like breakfast was delivered late...the blinds on the patio door were left open more than he wanted....and I guess the biggest one..he just wanted to be home.
Ask the Hospice Nurse or Social Worker where she would be placed. I know it might not be exact as sometimes they do not know what beds are going to be available until the day or two before. But you could at least "tour" the options so that if you have any preference they could try for that one. If your Hospice has an In Patient Unit that would be the best bet. Some Hospice also use a local Hospital that might also be an option your Hospice might have. If MIL is real mobile that might not be the best option. In a facility that would have more activities would be better I would think,

You need to do this both of you need to get a break.
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Reply to Grandma1954
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No, I haven't used hospice respite 5 days.

Correction: I just read that your husband doesn't want to take his mother to a respite facility. As another said, you take your break for 1-2 weeks and let him manage his mother.

STOP / DO NOT ALLOW yourself to be a doormat.
Your husband is taking advantage of you. Stick up for yourself.
If you don't, no one else will.

And by the way, once you return from two weeks off for needed renewal / relaxation, scale down the hours you are 'on' daily ... and be sure to take two full days off (or more) during the week. In other words, take care of yourself daily ... do not burn yourself out.

I encourage (and implore) you to do what you need to do for your own well-being / health / energy. We all need breaks. If you do not take care of yourself, you will not be able to care for your MIL.

I would turn the question back to you:

Why WOULDN'T you take advantage of a respite offered?

And, your MIL should NOT be allowed to get up in the middle of the night roaming the house. Give her a port-a-potty in her room. Allowing her to 'roam' is waiting for an accident to happen .. including her walking outside the front door.
And, should something happen in the middle of the night ... who's responsibility will it be to manage the crisis / need? YOURS. [ = this is not okay]

Gena / Touch Matters
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Reply to TouchMatters
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We haven't, yet. 10+ months on hospice. And counting. Father is 94 yrs now. I wish I would have tried it when he was still more able to communicate his needs and was still able to get up and transfer and walk with a walker. Now he is bed bound and Hoyer lift and mostly total care. Its more worrisome to leave him in the care of a facility but I still think about trying it, often. Our Hospice only pays for SNF respite. But other facilities like MC also offer respite but you would have to self pay. I would consider it. Maybe try a 5 day respite at SNF while you are still in town and see how it goes? You can visit and keep eyes on the scene. Try the best local SNF you have an option for. That may mean being flexible on what days and no major holidays. If she is up and mobile and able to eat and drink and toilet mostly on her own, in my opinion, the pros outweigh the cons. Our SW has told me many hospice pts families use the respite every month or every other and sometimes private pay additional couple of days to get a full week off to do other things. She said it works well. The hospice pt gets used to the place they go every month. I think the more functional the hospice patient, the more they can cooperate and understand, you are here for a week so we can take a break, the better it works. Pick the best local place, and try it. Or /also, like others have said, let her son, your husband, handle her care full time for a week while you take a break. Do it regularly. You're not alone. Take care of yourself.
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Reply to Beethoven13
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I have used respite at a long term care facility. Your husband is selfish. You are taking care of HIS mother. He should take a week of vacation and stay home with HIS mother see how it really is.
What a selfish man
The respite care is wonderful. They are safe, cared for and you need not worry.
They have shifts of people to care for your MIL.
Leave for the weekend and let him see how it really is.
S M H
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TouchMatters Mar 17, 2024
Weekend is too kind.
This woman should take 1-2 weeks off . . . Minimum.
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My mother has been in home hospice for about a year. I live with her and am her caregiver, as well as working from home. She is wheelchair/bed bound with dementia.

I was hesitant to send her to respite care, but once I tried it, I've never gone back. 5 days of not having to care for her is a godsend! We've done it several times now. The hospice organization here is really good, and I completely trust them to take good care of Mom when she goes to "the spa".

The first time she went I expected her to be confused for a while upon her return, but she was fine. Always in good shape when she comes home, you can see she's been well cared for.

Just knowing I could have these days "free" every couple of months has made a world of difference to this caregiver.

On a bittersweet note, they are now getting ready to discharge Mom from hospice. Apparently she is not declining anymore, or at least not to the point Medicare will continue to pay for her hospice care. I guess we'll go back to our former home health care company as I really need the help, but I will miss those respites!
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Reply to CissyR
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Back in 2012 during Hurricane Sandy in NYC we had to get my MIL who was on hospice out of her home because we were concerned about the possibility of losing power and flooding.

She spent two weeks in respite at the hospice facility. She wanted us to take her to our home which we couldn’t do because we had no power.

Hospice did well by her and us, especially given it was during Sandy and for the two weeks after. I’m sure the facility was dealing with a lot of issues as well.
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