Has anyone used hospice respite that’s offered for caregivers? What were your experiences? Good or bad?

"I want to look into a good respite facility, but my husband is not interested in taking her to a respite facility." Why would he when you are the one doing all the work taking care of his mother.

When my MIL was in hospice we used it for a two weeks respite. She was not happy about being there, we received several calls from the staff about her wanting to come home, but she was well cared for and none the worse for the stay when she finally came home.

We had to put her there because of Hurricane Sandy. She couldn't be home during the storm because she needed oxygen in case the power went out. Hospice actually suggested doing the respite. It worked out well because there was clean up to be done.

Mom was in physical hospice for 10 days and I saw two residents who were on hospice respite at the facility. Both seemed to do well. Neither declined during the visit. It seemed like each one was in for about 5 days.

I believe each comes every month for the allowed time to give the family a break.

I had written earlier that I would use respite every 60 days. We'll, I used 2 different facilities and both almost killed him with pure neglect!! Never again. I now have a hospice aide stay at our home while I break for a few days. I pay her$300/day and worth my peace of mind.

Hospice is end of life care.
I doubt she would qualify for Hospice.
I am unfamiliar with the place you mention and would suggest that you explore the option yourself. I wonder, however, with the near constant falling now, and with the facts being that a fall is often the beginning of the end, whether your hubby may feel some guilt in leaving his mom at this time. You may need to consider your getting away on your own and leaving her in his care.

I wonder also where your husband is in all of this. You often say "I" as in "I've had to stay on the couch in the living room..." and also "she" as in "She needs...". I don't hear what all hubby is doing. Is he still working? And I can't imagine any of this is fair to two early teenage children.

I myself would now tell husband that I quite simply cannot do this any longer. I think MIL after 5 years should be in placement, and on palliative care.

My mom is on Hospice and I am sole caregiver was hesitatant to do the 5 Dat respite. I went and visited all the Nursing Homes she was allowed to go in. She just got home on Friday it was the best ever for me and her. I just stayed at the house first time been alone in my house since 2016. The Nursing home I chose was small and about 25 minutes from my house. Was. in the Country which is what I would search for as they do not have high turnover. She hated it first day but then she was ok the day I came in to get her she was playing Bingo. Just do it. You can still visit one or 2 days just to re assure her she will come home tell her they are gonna her get better. But just knowing I did NO caretaking was such a relief.

Try different sleeping aides. My husband was more agitated with trazadone. Now on Seraquell. Life is very hard and I'm looking for a small group home. The 2 facilities for the 5 day respite were both horrible. It was harder on me when then brought him home.

Well, we took advantage of our first ever respite today. We were very impressed with the facility. The workers and people alike were all very friendly. It is an Assisted Living facility that offers respite care for caregivers. It is like a small resort with nice rooms equipped with microwave, small kitchenette, tv, showers with pull down seating. We arrived at noon, to which everyone was having lunch in a very nice dining area. MIL ate lunch and spoke to a couple ladies at the table with her. My husband and I stayed with her for an hour or so, then left to go for a visit to a nearby hospital to visit a good family friend. Came back to pick MIL up approximately four hours later. She was very distraught saying she hates being a bother to us, but does not ever want to go back there to “that place” ever again. She thinks she’d been there overnight and that she was in the hospital. Mind you, this place looks nothing like a hospital and they kept her busy playing games and activities the entire time we were away. She proceeds to go on and on obviously distraught for hours after getting back home, until she finally wears herself out and falls to sleep. This is so hard for my husband, her son, who questions taking her out of our home for any amount of time at all to begin with. I, on the other hand, NEED these few hours for a break from being her main caregiver on a daily basis, along with raising two of our grandchildren, ages 13 and 12. We were looking into taking a 5 day respite paid for by her hospice. This was a trial run and it didn’t go so well, which I’d expected, but not sure how to proceed from here. Take her back for another short visit at a later date, or forget it altogether. My husband is saddened by her reaction, I, however, am perturbed. She had put her own sister in a nursing home with Alzheimer’s, but she refuses to even go for a day visit to give us a minute away alone out of the house. I know she is not in her right mind, with Alzheimer’s. I feel bad to feel this way, but feel she is selfish to refuse us a minute free time from her and our grandchildren. Any advice appreciated.

We have access to an amazing Respite Care. Here on Maui we have Islands Hospice which provides 5 days of care at a time for a person who is not under hospice care, but has dementia or Alzheimer's and has started falling. My 91 year old husband is in his 6th year of dementia and I (82) am his caregiver, He began falling last summer and the third fall broke his leg which was followed up with a very successful surgery. Our 3 sons took turns sleeping next to him on a camping cot the hospital and 10 day stay at a rehab center. They relieved one another night and day, taking family leave from their jobs. He would otherwise have gotten out of bed without assistance and no doubt ended up in a wheelchair for life. Attaching a device to the bed cannot get a nurse there before he would be on the floor. He, of course, could not remember the original fall, surgery, or where he was.

He returned home and Islands Hospice, paid by our insurance and Medicare, provides a weekly visit with a nurse trained in dementia care and 2 visits a week by an aide who showers him, cuts his fingernails, shaves him and cuts his hair. He and I are greeted with hugs. The same 2 women always came. There was always plenty of laughter and helpful suggestions plus avocados from their yards and bakery goods.

He has been to their Respite Care twice. You can sign up for this whenever you like. It is located in a regular home in a nearby neighborhood. The nurse and aide who come to our home always go there to visit him. They provide company, activities, choices of food. Our oldest son comes to our home the night before my husband is going to be picked up and explains everything again to my husband who adores him. He comes again the next day to kiss and hug his dad when the van arrives for transport. I have been told to include his favorite coffee cup, blanket, photos, etc. in the suitcase. They wash his clothes while he is there. These people have become part of our family. My husband loves them. He does forget the nurses when they're not there, but has a big smile when they come and reaches out for a hug and starts laughing.

There are great places, but check them out when you start looking. His nurse and the social worker suggested the last Respite Care. They knew before me I needed it. Our sons do our errands and drive us to appointments. Also, our daughters-in-law, one of whom has been our hospital chaplain.

There are excellent places, but check them out first!

I am unaware of hospice respite. It doesn't sound like your loved one is near qualifying for hospice, but talk to their health care professional. We have used residential respite several times. It is best to go visit several facilities if possible. They may be part of a continuing care community or stand-alone nursing home/rehabilitation center. Generally places that have a memory unit are better, but some places without one can be very good also. It can be quite challenging finding a place as many places that look great, have a bizarre idea of what short-term residential respite is (a 30 day minimum is not short in my book and can be prohibitive financially).

Confusion may be increased with the change, but if you can manage to pay for a few extra days before you leave, it can be helpful for you both to help them get settled and for you to feel more comfortable. Within the first week of bringing them back home it has been my experience that things return to normal.

You want what is best for your loved one. You need to realize that if you think that your continuing to care for them at home is that, then you need to make self-care a priority. If you get burned out, it isn't going to be good for you or them. You don't want your ability to care for them to suffer because you neglected your own needs.

Good luck.

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.

I have been the main family's financial support since 1989, and to be truthful, I am finally getting tired. I have worked with my husband through a benign brain tumor, a replaced hip, a hernia operation, and a damaged hand. We have been married for 52 years and it is finally getting to me. Now he is starting dementia and has lung cancer, prostate cancer, and lung problems. The nurses keep saying that I take good care of him-and I do, but now I am getting tired. I will be 78 soon and just cannot do as much as I used to do. 
He is under hospice care, and they are wonderful, but he only went to respite once - for 5 days.  When he went, he found the facility too cold because the whole building had one large heating and cooling system. At this point, he has refused to go anymore.   We have a wonderful nurse and it turned out that there is an additional facility that is smaller and each room can control the heating and cooling. He is scheduled to go there this Sunday (but he will only go for 4 days). I hope he likes this one. I would say to check out any facility that a patient may be sent to for respite. I cannot make him understand that it is for me, not for him. 
I have two children who live in the area. My son is busy, but will always come after work if I need to shop, etc. My daughter works 6 days a week and is exhausted (she has a disabled husband and child). We have made arrangements for her to come over once a month, but she does not stay too long.  The other daughter is in another state. I still work, but from home. Between working, taking care of him, and taking care of a home, I can barely sleep myself. We are on social security and money is tight.   
I know that they may have volunteers to sit with him, but only for a few hours. Those hours would be heaven, but volunteers are in short supply and they can not take him anywhere, he can only sit with them outside.

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!

MamawT: It is of paramount importance that you seek respite, else you fall faint from exhaustion.

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 @

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.

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.

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.

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

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

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.

I have not use Hospice but recently place my wife in a facility for 9 days so that I could travel to attend a family event. Our Primary Physician completed a certification re her health issues. Among them she needs assistance with fluids an nutrition. I also prepared a 2 page document re her health issues and I addressed her eating and drinking issues. I addressed her drinking issues in detail.

At admission I was introduced to their physician to whom the critical care unit reported. We stood by my wife and I gave him a copy of the document I prepared and spent 25 minutes discussing the drink and food intake issues.

i returned on the afternoon of the 8th day and visited my wife. I noticed she had a bandage on her hand and knew she had blood drawn. I inquired of her nurse why and she didn’t know although she was at her computer charting. I stayed for an hour and then asked again and she still didn’t know. As we were talking I received a voicemail message from their physician and at the same time he saw me and came over and asked me to step over to his work space.

He told me that it was their policy not to do blood labs on respite care patients but they did on the day after admission and on that morning. There were no issues on the first blood work but the second (8th day) showed elevated sodium levels and white blood cells. His assessment was she was dehydrated.

My wife’s diagnosis is MS (44 years) and she is unable to transfer, stand, turn in bed or use her arms and hands. She is unable to reach for a cup or grasp if she could. When the aids brought in water she was not offered a drink and the only time she received fluids is when a nurse administered medications. When she received her last pill the drink was sat on the tray table and they left.

The physician prescribed fluids via iv on the evening of the 8th day and morning of the 9th. In addition to dehydration my wife also had a 4% loss of body weight.

the facility we used is very large and in addition to skilled care offers memory care, assisted and independent living and is a large and well maintained campus. My wife’s stay was private pay and not cheap.

i wrote a letter to the administrator and included copies of our Dr’s certification, my summary document, blood lab reports and a number of documents from their patient portal. The documents from their portal indicated my wife had no impediments to moving in bed, not at risk for dehydration and contained numerous comments about activities my wife like to do, tv programs she watched, books and magazines she read and that she liked to cook and garden. My wife is unable to move or turn over in bed and I have to pick her up for transfers. She hasn’t read a book in many years, she has never planted anything and hasn’t been able to operate a tv remote in over ten years and never watched the TV’s noted.

I received a call from the administrator and their head nurse. They acknowledged that they had failed my wife in their care. They said their physician was initiating additional training of staff to address the issues we experienced. I specifically stated I was not looking to have anyone disciplined but rather that they needed to address the failings noted. I was told there were a couple of terminations that were done before my letter was received.

Now I am addressing billing issues; among them two boxes of exam gloves (300 gloves) supposedly used during her 9 day stay, blood lab work done on the day after admission (the blood work done on day 8 was submitted to and paid by our insurance) and a dedicated wheelchair. My wife said she was never out of her room and the only time I noted a chair was during the admission of another patient or to move it into her room to keep it out of the main hallway.

I have notified my wife’s primary care physician and her neurologist about our experience and that I would definitely not recommend the facility we used.

I have a good facility that I’m planning on touring. They will come to our home to do an intake on MIL first before planning anything. Does the respite stay for a few days away from regular routine and home further the confusion and for how long? Good experience for those staying on respite or bad experience?

I think the hospice respite locations may be dependent upon what your hospice company can locate in your area. My cousin took her mom several times. After using a care home once through hospice, she would private pay at the same location when she needed more time off. When I asked for my aunt it was in a NH or self pay in an ALF. Your hospice company, knowing your mom, should be able to guide you on the choices.
Perhaps your MIL needs her meds adjusted to help you both get rest.

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.