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?
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.
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.
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.
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
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.
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.
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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