Follow
Share

I am my mother's sole cargiver. She is 84 and on hospice. She does have dementia, so my only breaks are when I can get her into the nursing home for 5 days and I get a break. They offer it 1 time a month.


I worry that some will say that it's going to cause her dementia to get worse when I take these breaks. Anyone else have this conundrum?

Not trying to be smart here, but does it matter that her Dementia worsens, she is on Hospice. To be excepted to Hospice she is at the end of her life. Take your much needed break.
Helpful Answer (7)
Reply to JoAnn29
Report
Soldier4Christ Jul 17, 2025
Not at all smart I like things told to me straight up ex military :) and I am going to Florida :)Thank you
(2)
Report
Your moms on hospice, you deserve a much needed break. Go and have fun, try not to worry, I'm sure your done enough of that. 🫂🫂
Helpful Answer (6)
Reply to Drivingdaisy
Report

If you have a hospice agency that offers respite for 5 days every month, that is unheard of as hospice is to offer respite care only once every 90 days for up to 5 days. So I guess count your blessing there.
And your moms dementia will only get worse regardless if she spends time in the nursing facility or not, so just make the best of your breaks and know that once a month respite is not the norm for hospice.
Helpful Answer (7)
Reply to funkygrandma59
Report
Soldier4Christ Jul 17, 2025
Oh wow I did not know that and yes it's 5 days every month here in Oklahoma. So very thankful after reading all these posts. I am really, really encouraged.
(0)
Report
My dad’s dementia symptoms got way worse on hospice at HOME. As the body dies, so does the mind. Where you are has little bearing.
Helpful Answer (4)
Reply to PeggySue2020
Report

We are trying to get a place for respite care for my dad now for about a week. He’s not on hospice, so we’ll self pay, but it’s worth it. We need a break. It’s good for so many reasons. Best wishes with your situation.
Helpful Answer (5)
Reply to Sunnygirl1
Report
JoAnn29 Jul 16, 2025
My break turned into Mom staying there. She acclimated pretty well and the money was there. She had more freedom than my house.
(2)
Report
See 1 more reply
Take the 5 day a month break if offered and put her in respite. It won’t matter with her condition in the long run and it’s good to get her used to a respite stay before her condition worsens. You can go away or just enjoy being in your home with less responsibility and privacy for those 5 days. Or a little of both. Enjoy the Freedom. Get her used to the respite routine. Thoughtless people who criticize you can be advised to visit with her every day during her respite stay. And mind their own business unless they are willing to participate in mother’s care.
Helpful Answer (9)
Reply to Beethoven13
Report
Soldier4Christ Jul 17, 2025
Thank you thank you I am getting more excited.
(3)
Report
I agree with everyone else. Her dementia is going to get worse period. Take the breaks!! They will help you and you matter.

If someone says the respite facility is bad for her, ask this someone if they feel so strongly, would they step in to care for her 24/7 to give you a break.
Helpful Answer (5)
Reply to Suzy23
Report
Soldier4Christ Jul 17, 2025
Thank you and that is the big part I have rarely thought about myself I always care for others.
(1)
Report
PLEASE do not listen to anyone that tells you that you getting a break from being a full time caregiver is going to make mom's dementia worse. My Lord how much worse could it get. She WILL continue to decline, the dementia WILL get worse, she WILL not get better no matter how much you care for her. This is a fact of life with dementia.
Please take care of yourself.
Helpful Answer (7)
Reply to Grandma1954
Report
Soldier4Christ Jul 17, 2025
Yes I just have to keep reminding myself of this its hard to let go of the person they use to be.
(3)
Report
When you say "I worry that some will say..." that tells me you think it might cause her to get worse and it will be your fault. Listen to those posts from other caregivers have said here. If you can get the time away, take it. If you mom was still cognizant she would no doubt tell you to take care of yourself and avoid burnout. You are worrying about something that hasn't happened and probably won't. And if someone you care about said anything invite them to care for her 24/7 for five days. Relax, we all need it.
Helpful Answer (4)
Reply to hmyers
Report
Soldier4Christ Jul 17, 2025
Thank you so much
(0)
Report
No, it isn't likely that it is going to make it worse. Who can know; perhaps the extra activity will make it better. This isn't ever going to be known, so why would you add to the torment you already have caring and standing witness to all this. The dementia is her life now, until she is able to peacefully pass. Please allow yourself the respite that you need to survive this.
Helpful Answer (7)
Reply to AlvaDeer
Report
Soldier4Christ Jul 17, 2025
Thank you these are the re-assuring words I needed to hear. And you are right we just don't know the Hospice nurse said it's her journey.
(2)
Report
Yes! It is the right thing!
For both of you! She gets attention from others, and you get a break for your sanity, which you will need if you are to continue being a good caregiver for your mother.
Don't worry about what anyone else thinks! And, if you are worried that you are contributing in some way to her cognitive decline, you are not! You can not stop her dementia from progressing. And, her having this experience is likely good for her mental health. Interactions with others rather than solely isolated with you is not going to hurt her!

I'm so excited because this last week, I finally got hospice care for my husband, whom I've been caring for for 10 years, 24/7 without a break! I met with the hospice social worker, and she will take care of all the arrangements and transportation to get him into a nursing home for 5 days so I can finally breathe in my own home without hearing him constantly yelling out for help!
At this point, I don't even care how the experience will be for him. If they can keep him alive for 5 days before returning him home to me, I can hardly wait for this much needed break!
Helpful Answer (10)
Reply to CaringWifeAZ
Report
Soldier4Christ Jul 17, 2025
Thank you for that my mom has been on Hospice for 1 yr and it's been such a big help to me the Chaplain the nurses just to talk with them when they come over. Yes the S.W. does arrange everything my mom is gonna get picked up August 2 to 7th. I am going to Florida for a break as it seems when I stay home I just do more work but when I go somewhere I get more rest. I hope everything goes well for you.. Thank you for the encouraging words.
(4)
Report
See 2 more replies
If she is on hospice, consider if she is eligible for admission to a hospice house.
Helpful Answer (3)
Reply to Taarna
Report

Respite care is always the right thing.
Helpful Answer (4)
Reply to brandee
Report

Her dementia will get worse if you take respite care or not. Do it ❤️
Helpful Answer (7)
Reply to YoungestOneof4
Report

It is a hard decision. We want to take care of our loved ones the best we can & not do anything that makes them worse. But not getting a break now and then can make things worse because we get burnt out. We get tired & cranky. Worse yet, our health takes a beating & we can’t care for them as well or at all. So not only does respite give you a break & chance to rest, it helps you continue to be a good caregiver.
It was still a hard decision for us with our dad, so we still researched the places hospice would cover the respite at, almost like we were placing dad, to ease our minds some. And like others have said, ones with dementia are going to continue to get worse with or without respite care. It also gives you a chance to see how she does in a facility if you ever need to place her in the future.
You are a loving caregiver. Taking a 5 day break/rest doesn’t change that. Enjoy your time of rest.
Helpful Answer (5)
Reply to Ltracy
Report

That's what hospice respite is for, YOU !!! I recently lost my Wife June 26 after 10 months of hospice care, read the post " Guilt seeping in " Three months into her hospice , November at Thanksgiving, I had hernia surgery. My wife was reluctant to go, she also had severe anxiety to leave the house, but didn't have much choice. Her RN helped ease her to go, I needed a couple of days to recoup. She wasn't to crazy about it, & the CNA'S at the respite house weren't as responsive as yours truly, but ,It got her out of the house, sadly for the last time.
Forget what some will say, it's not anyone's business but yours. If anybody wants to follow up with criticism, let them follow up with help & support. As far as the dementia , It will run its course , no matter what you do. I took care of my wife out of love & duty, & put my emotions aside. You on the other hand are a good Daughter, more sensitive & attached , like my wife to her mother, joined at the hip. Women are nurturing by nature , to parents , spouses & children, honor that calling, take care of her, but take care of yourself first, give yourself the much needed break. Good luck& God Bless You
Helpful Answer (1)
Reply to NancyAnne
Report

Soldier4Christ: Perhaps you need respite.
Helpful Answer (0)
Reply to Llamalover47
Report

Soldier4Christ: Seek respite. Error duplication.
Helpful Answer (0)
Reply to Llamalover47
Report

It is time to stop worrying about what 'others' say. They are not the ones living with her 24/7, putting their lives on hold to make sure her needs are met, and dealing with the realities of dementia and all that this entails. If you have the option to enjoy 'respite' from these unending responsibilities for a few days, you need to take that opportunity. The caregiver needs to look after the caregiver's needs because if you don't, you won't be able to look after your mother's needs. You need to refuel and restore your own energy- physical, emotional, mental and psychological - in order to continue looking after your mother. Perhaps one of those who is concerned that your mother's dementia may increase by not being at home, volunteer to take your place for those few days you need to recoup your strengths. See how fast their tunes would change then.
Helpful Answer (1)
Reply to Kathryn41
Report

Ask a Question
Subscribe to
Our Newsletter