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?
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!
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.
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.
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.
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!
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.
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
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
This woman should take 1-2 weeks off . . . Minimum.
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.
Friends, church associates, a therapist.
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.
However she can get it - and leave the responsibility of her husband's mother to the husband - the mother's son.
Yes. Hospice care facilities / management is all over the map. Some are excellent; some are not. Clearly, we don't know what we are getting when we sign up for Hospice. It is a crap shoot. Sorry you went through all that.
However, IT IS the responsibility of her husband - the son of the mother - as to how to handle getting the care needed for 1-2 weeks. Perhaps he can hire 24/7 caregivers.
Perhaps your MIL needs her meds adjusted to help you both get rest.
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.