How can I tell my mom I need a break?

Health2018, check with your Hospice provider to see what they can do for you.

If I don't get a break from my husband with dementia I'm going to break down, I just feel it. He's now 69, me 66. It's been one crisis after another for the last 8yrs. I can't afford to have a caregiver more than the 2 days I am able to work part time. I need to be working much more. How does hospice help for short term stays--2 weeks maybe? So I can get a break as well as look into more employment. I'm in NC.

at our house- the explanation goes like this : You specifically said that You do not want to go into a full time facility so here is what will happen ...

I am a full-time carer to my mum and I understand exactly what you are going through. Mum has been living with us for three years now and at first the mention of respite care would not even get a response and I would feel guilty for even suggesting it. But I became so stressed that I had to tell her I needed a break or I could not continue taking care of her. Now I just make sure I find her a good nursing home and a nice room with a good view. She does not like to go but understands that I need regular breaks in order to continue caring for her at home. Explain kindly to your Mum that you and your brother need a break for your own well-being otherwise you will be unable to continue looking after her. Perhaps, if she just goes in for a few days initially, she may be more willing to go for longer the next time, as it will be more familiar to her. It is a very difficult time and I hope you get the rest you deserve.

My mother can still stay on her own for a few hours, I've only been doing the caregiving for a year now.  But there are times that I need to go out - with hubby and child, just a date, or friend outing, I just schedule an extra shift and inform her that someone will be covering for me during that time.  Some times I briefly say where I am going or just say I'm going out (I'm no longer a child who needs to disclose her whereabouts!).

I read in one of the answers that giving options where "NO" is not one of the possible answers is a way to go...is like a child...do you want the blue shirt or the yellow shirt?  Do you want Mac and Cheese or Pizza? 

I recently had a caregiver counselor remind me that respite care is not for the patient, it's for the caregiver...so you are doing it for you, not for her, and you are making the arrangements so she is taken care of...whether she likes it or not...

I’m with CaregiverL! Been there and had to do that!

Knowing you need a break! I can sympathize greatly with that. Only you can arrange that.

Observing, considering, contemplating.....
A caregiver's job should be, imo, to protect the "patient" from undue stress, including
caregiver yelling, screaming, meltdowns, no matter how difficult.

It is doubly hard when it is your mother.

Who yells at a patient, or in front of a patient, sorry, NO, stop that.  If I catch myself, I can step outside.

When you find a way to do that, would you let me know your techniques, because I am way too challenged here.

The really young & the really old/sick have a tendency to think they are the centre of the universe so you need to explain in detail that there are others with needs - DO NOT ASK HER PERMISSION rather book it for a week then get your rest - if after 5 days you come for her then you can say that you wanted her back with you because you missed her a lot so this will now give her a sense being loved etc & you will have an easier time if it comes up again

I would go as far as lying to her that you or bro needs a small medical treatment [pick something not too visible] & that it needs to be done soon to prevent a bigger future problem [afterward put a band-aid over your successful whatever] - a possible is thyroid treatment that uses radioactive iodine so you are removing her to a safer place for her benefit - you & bro need to help each other over this issue [shows family harmony/support which all parents want] for the few days

When [not if] she goes then take the first day to sleep - then do something for yourselves in your own interests like a fishing trip, pedicures, nice dinner at a nice restaurant, go to your dentist/doctor, clean her room/the whole house fully & maybe get a cleaning crew to do it - just enjoy the time off because that is when you are recharging your battery for the next haul

Some Assisted Living facilities offer respite stays. If she were to visit a place, be welcomed, have lunch, meet others, etc., maybe she would feel ok about it. Can she visit the hospice facility? I wore myself out visiting Mom in an AL Dementia unit, because the care there was way below par.. and then felt guilty because I didn't move her sooner. I had looked at many more facilities & finally chosen one. But my hand was forced when she developed pneumonia which caused a heart attack & long story short, she's now in a Nursing home. I'm still dealing with guilt feelings, but am trying hard to get some rest and pay attention to my health which is worse than hers was at my age & that's kind of scary.

I believe I have read that 40% of caregivers die before the people they are caring for. Tell Mom you need a break so you don't become part of the 40%. You can also tell her the dates you will be gone and let her know you would be happy to arrange her care during that time.

Tell her the truth and reassure her that you aren't deserting her, just let her know that you and your brother need a rest. If all else fails you may need to get a power of attorney for her medical care and make the choice for her. What people fail to see is that a tired run down person is no good to anyone. When the caregivers health start to deteriorate what happens then?

Don’t ask her! Just do it! She’s never going to care one iota about you & if you collapse she won’t miss you or ask about you either! She will just be concerned about herself & her own selfish needs.

Print out this whole post and make it large for her to read without squinting. Let her know this situation is not working for you, your family or her son anymore. After she reads these posts with you nearby, make a decision with her that is different then it is right now. As adult kids, we forget that our parents have lived decades longer then we have. They are stronger then we think. They are smarter then we think. They can manipulate us if we let them. Think back to your teenage years and thought you knew more then your parents. YOU DIDN'T. Now. Your parent thinks they know more then you. THEY DON'T. You see things in their behavior and life that are unsafe, that they can't or refuse to see.
Make the decision for them. As mentioned earlier, no more asking.....the answer will always be "no". It is time time to tell and not ask.
Good luck to you and your brother. Your mother is very lucky to have you both. Here on this site, we know it is true. (all of us need to let you know, since your mother's voice can be worth more then one thousand of our voices.)

Copy and make larger this whole post and say to Mom. I need you to read this and then we will make a decision together. How it is right now is not working for me, my family or your son. Period.

Get care providers (or a friend) in place. Introduce them to your mom, Ease into this new person. Tell your mom you need to go to the store and XXXX will be here with you for a while. In other words, you must learn to take control and do what you need to do - to survive, if not thrive, focus on self-care and be there for your mom. You want to avoid 'arguing' with anyone with dementia. This type of verbal exchange will only burn you out-there is no winning in trying to convince someone with dementia the reality of a situation and what you need to do for self-care which will ultimately also serve her. I highly recommend role playing with a friend. While it is easy to say "don't fall into the arguing trap," it is not always easy to do - so role playing may help you learn how to avoid these pit falls. While I used to tell my client I'm giving her time outs (do to rage), you might tell your mom, "I need a time out" - and need to XXX (go outside, in the yard/garden, to the store - whatever you need to do to stop the cycle and patterns that do not work for you. Gena

So sorry you are in this dilemma. I do not have your solution, but will share what we did and how that works in hopes it will give you some ideas.

My mom falls apart when we take her to
respite care so my sister stays with her the whole time and she does well.
Hospice provides her care at no charge for the respite 4 days a month which is
wonderful.
Hospice will let her stay longer but she has to pay for the extra days. If there
is no one of the family who will accompany her to respite, perhaps you and your brother can alternate which of you stays with her and which is off. Once she learns that it works and is fine, then you both be off at the same time. My mom has been going 5 months now and does not panic over it anymore (but my sister still is staying with her).

Before we got respite, I told her that I needed a break ( doctor, dentist, rest, shopping etc), so she
agreed to pay for a caregiver to come 1 day a month to sit with her so I could
have a day off. We were able to find someone who was agreeable with her. This is working well.
In the initial conversation, I told her that the
recommendation is that the caregiver should have 1 day off every week. Then
I said I thought 1 day a month would be enough for me. She agreed to that.
(I read a book on negotiation and it said to ask for way more than you need, then compromise down to your real number.)
When hospice offered respite,
I still kept the 1 day a month. So now I am getting 4 plus 1 each month.

We have found that giving her choices of which she wants lets her feel
respected and that she is still in control of her life decisions. So the choice
is , Do you want to go to a facility, or do you want a care giver to come here?
Do you want to pay for a facility, or do you want to pay for a care giver to come here?
Do you want week days, or do you want a weekend included?
The questions never give the option of saying "No". It is always "Which of these
do you prefer?"
Someone recently said "The choices you make today limit the options you have tomorrow"
The conversation may need to include what options will be available with each
choice in order for her to make the best decision. Sometimes it is hard for them to visualize all the ramifications. Some things that I think are completely obvious are not perceived by others so we have to point out those hidden results.

That is how it worked for my mom, who still has her mind. I do not have any
experience with dementia to share.

God has so many people waiting to help us, I pray for open doors for you to
see and access your angels.

It appears you are in a difficult situation on multiple counts. First, you and your brother need to address your roles in the household. Yes, she is your mother and you are the “kids”. Unfortunately, there needs to be a cognitive role reversal. You must now take over the decisions of the household. Yes, your mother will get mad and it will be difficult for you to handle it at first. Do NOT let her anger or words get to you! She is frustrated with the situation and her inability to be the mother she wants to be, also. We have to remember her perspective also. As others have said, stand up, make the arrangements and take her. She may pitch a fit, but do it. You and your brother need the break more than you even realize.

Another option may be for you and your brother to take breaks at different times. This is what my husband and I often do. That being said, we also arrange for breaks together, but not for long stints. A night or two does wonders!

Finally, you may be able to find someone to come into the house and stay for a few days. A relative or friend? There are also many places online where you can find help. I would honestly suggest having someone come in once or twice a week to give your brother a break. He needs it!

Good luck. It is tough to start, it you can do it!

1. Sometimes money talks. If you tell her it's already paid for, maybe she would rather not waste the money, pay twice (because if she doesn't go to hospice, you will hire someone to come in, using her money), have you cancel your own plans for which you have already paid.
2. Manufacture a crisis. An out-of-town friend in need, a special opportunity to see someone, a health problem of your own (she doesn't need details).
3. If none of these work, I am struck by how often being direct, even blunt, can work. "Mom, I need a break, I need a life, and this is what I am doing. I am doing my best, all the time, for you. Sometimes I can't be there all the time, so these are the arrangements I have made. You might not like it but you will survive it, and I will get to re-charge so that I can resume being your primary caregiver."
4. There will be fallout, of course. She will complain about everything: the people, the food, the room. Let this wash over you like rain, then shake it off. If she starts to repeat, you may have to remind her that she told you all about that already, how awful it was. Tell her to find someone else to complain to about what a horrible daughter you are. With any luck, she will revert to being (somewhat) appreciative, and if not, perhaps the 3rd party can re-direct her to gratitude.

Im fixing to do the exact thing! I desperately need a break and like it was suggested I don't plan to ask. I got it approved by doc and im telling my mom just like 3 days before she goes into the facility. She wont be happy but i need a break and will let her go there for 3 or 4 nights so i can go out of town a couple days. She will try to refuse and say she can be alone. Not happening. My "break" isn't going to be worrying about her falling and alone. So grateful i found the service and doctor approved her to go there few days. If we dont take care of us then we wont be good for anyone else. Best of luck and stand your ground!!

Freqflyer, At least in my State, Medicare, through Hospice, does cover respite care in a SNF. I don't recall if it's every 2 months or every 3; but it pays for 5 days of care, including room and board.
Ash, you and your family need to do it for your own well-being. I would encourage that someone check on her in the facility, to be sure she is being cared for. Hospice will probably recommend that you stay away, but you will want to know that she is doing well there.
Would she understand that it's either 5 days of care she doesn't have to pay for or 5 days of paying for in-home care while you take a break?
I agree with those who say that your necessary time off is not up to her.  Perhaps Hospice can get that across to her better than you.

When my mother was no longer safe in my care because of a severe fall risk, we very reluctantly decided that she needed to be placed, the first member of her family EVER to enter residential care.
We considered this the best of the few terrible choices we had, and we deliberately put her in the car and took her, me, her only child feeling worse with every minute of the trip.
For the first few days I stayed with her the full day, then went back to work.
Much to our great surprise, she not only “adjusted”, but THRIVED. Her caregivers loved her and she loved them.
We are now caring for her youngest sibling, and have executed the same process. However much we love them we have to keep in mind that doing the best for a loved one with dementia is not the same as doing what they have decided they want.
Hope you and your family find some way to relief soon.

Can you get your Hospice group to help out here?
Explain to your Mom that Hospice would like to admit her for a few days to "adjust medications get an accurate weight and monitor her eating" (or whatever therapeutic fib works) just to make sure that everything is going well?
Don't forget Hospice is there to help you as much as it is there to help your Mom.

ashstraz, can you clarify, is hospice coming into the house on some kind of basis - and is your brother using that time to leave the house briefly? Little bits can help a lot, too, while you make other plans.

For what it's worth, one thing we learned with my mother, is if we ask her a "yes or no" question, 99% of the time the answer is a resounding "NO" even if it clearly benefited her; as simple as "do you want hot chocolate? So what we started doing is not asking her and she is now 99% compliant. It seems that when we get older we don't want to make any decisions out of fear. Based on what some of our friends and family have experienced, I would guess she is afraid that the visit would be permanent. Once they understand it is only temporary, she might be more likely to agree.

How good are you both at acting?

Just daydreaming about it here, but suppose you suddenly discovered an insect infestation that required the house to be fumigated and therefore vacated for "up to a week." And cross your fingers behind your back.

More generally, and if your mother is too alert to be taken in by this kind of ruse, the thing to concentrate on is that you and your brother ARE doing x, y and z (for which neither of you needs her permission) and therefore a, b, and c arrangements have been made for her meanwhile. The point is to make yourselves the people in need and making choices, rather than her; because if you tell her what she needs to do and what decisions she needs to make you create the opportunity for her to say no. Let her stay in respite care be a natural side-effect of your being away, rather than a condition of your being able to go.

It's a cart before the horse thing, where you and your brother are the horse and your mother is the cart. The horse needs to lie down. It's no use asking the cart about it.

Technically, she does the right to refuse to stay in the facility if she wants. But if you have gone ahead and made the arrangements then once it all starts happening she's going to have her work cut out making them leave her in the house with nobody there to see to her.

You may not be in her good books for a while. But tough. If you and your brother don't get this break it'll get a lot worse than that.

And if you're too frazzled and your brother is too exhausted to go about this in a positive, let's-take-this-in-our-stride way with her, then make the arrangements and ask your hospice provider to do the explaining perhaps.

five days? How about five weeks?

I will tell you what the director of the Area Agency on Aging tolld me when she decided my mom needed to be "placed."

SHE WILL ADJUST.

I believed her. My mom adjusted. Yes, it took a while. Well worth the courage it took. All is well.

Pull up your big girl panties, get your courage up, and do what needs to be done. Take Harpcat's advice.

And not just for five days--be realistic!!!!!!!!!

Good luck! I do hope you and your brother are able to get a break. When my mother lived with me she could not understand why I needed a break. If I tried to explain it she became upset with me. I tried to get help numerous times from family with no luck. Mom
would not even consider hiring an aide, caregiver or going some where for us to get away. It was extremely difficult with her negative, criticizing attitude and some of our family still have no idea how much pressure I was under b/c they didn’t want to be involved. I reached a point where I could not handle it any further and had to do what was right for my own health. I really feel for
you and wish you the best.

Since hospice is there to support her as well as the family, can you ask them to talk to her about it and be present when they do. Perhaps they could accompany her on a "tour" of the facility.  You have her bags packed and then tell her goodbye and you will be back for her in a few days. It is not fair for her to hold you hostage...she is exerting all the power and you will need to set firm boundaries with her. Otherwise hire a paid caregiver and go away for a few days. Let mom pay for it of course. Hospice will still come by as scheduled. You need a break or it will affect your physical health. It’s already affected your mental health based on your post.

One suggestion is to let yourself have the ‘breakdown’ you probably try to avoid. Burst into tears, keep sobbing, say you can’t take it any more, and walk out. Stay away long enough for Mum to realise that she does not have the power to call the shots, and she may be more reasonable. If not, do it again. Three times might help to change the dynamic. Mum needs proof that she really needs you to be able to cope better, for her own sake as well as for you and your brother.

Does she have dementia or is it the lung disease? Can you appeal to her motherly instincts and tell her you just can’t do it anymore and you need for her to allow you to take a break? Tell her if she doesn’t cooperate, your ability to care for her is going to go downhill and your health and that of your brother’s is going to suffer. I don’t read much on this site about loved ones cooperating when their caregivers say they need a break. Mostly it’s the exact opposite. They dig their heels in and flatly refuse to go along. Maybe, if Mom can comprehend how burned out you are, and be very honest with her, she’ll cooperate. Even if her feelings are a bit hurt, a little honesty can go a long way.