Respite care with dementia, how are they when they come back home?

Think of the respite as a trial for her - you will then be able to assess her adaptability for the next time - maybe that will be a forever time - also she may bloom with people of her own age etc so that could help you when you decide to do something permanently because I'll bet you don't do 10 activities a week [excluding religious] like my mom's NH does

There exists no "across-the-board" statement as to how anyone with dementia will react with those sudden changes. They may do well or they're likely to not know "if they're coming or going."

Do It! She may love the company and actively even if she’s only a watcher. You may think that you’re being her a favor by keeping her in your home but you’re not. Even though she has dementia, she still wants control over her life. I did the same thing you did. I brought my mother into my home thinking I was rescuing her and saving her from going into a facility but the only thing I did was to alter my life and hers and not in a good way. As she has the resources to live in a good facility, let her go. It’s the best thing for both of you. You can visit her every day but you can also go back to your life; something you can’t do when she’s living with you.

You could tell that that you have to go out of town for a couple weeks and while you’re gone she will be staying at a hotel. When you get back, start visiting her, but then tell her the hotel is prepaid and she will be staying there. While you are gone you can call the facility and see how she is doing but I would not call her. I would make sure the facility knows that you may want to keep her there and for them to do their utmost to make her happy so she wants to stay. Good luck and enjoy your vacation.

First time I put hubby in respite care where he went to adult day care couple times a week, well I got shingles 2 wk before. He had never gone to bed w out me w him. I went to Europe & friend texted he's fine so I never even thought about him. Picked him up & he said he enjoyed it there. No problem so my worry was for not. Some friends have left spouse in after put in for respite. Good idea if you need that either for self or them. Ck out homes that have no more than 6 people. Many options but $ can slim choices. Be aware of add ons & community fee. Also make sure you sign so you will not be responsible for fees when parents funds depleted. Many have required 30 days notice to remove them. My hubby is going on yr 12 of alz & only problem is memory mainly. Needs prompting for teeth, where to pee. Etc. Shouts once in a while like needs attention. He sleeps a lot & when awake must be busy w puzzles, dot to dot or reads Dr Seuss books to me w gust. I never leave him alone & lately don't take him shopping. He doesn't enjoy & gets tired. I've learned when he seems frustrated or not wanting to do things it's because he's tired so we take a nap no matter of time. Everyone of my friends have felt guilty of admitting but know it's best. Get into a support group that shares everything. Free therapy & they have the same problems or will as you. We meet weekly in Palm Desert & biweekly in WA. Weekly best...God will be at your side. Talk w Him.

I know this situation well. It will be very, very difficult at first - for both of you. But you need the break! If you've put your time in, finding a nice, clean, happy place, you may be surprised at her acceptance. Maybe go there for lunch once or twice so she can get a feel for it. I took my parent's over several times beforehand, and they loved when the staff knew their names.

I put a note in my parent's room, that the aides would read to her whenever she would get upset about my not being there.

It basically said - 'Betty' and 'Bill' went on a vacation for a short while. You wanted her to go because she's been so tired lately.
She loves you and will be back in a few days.
If the caregivers are good, they can discuss it with her for a very few minutes, and then redirect her attention.
You have to take care of your mother's caregiver. You are cheating her out of a rested, happy, daughter that she loves. You will both gain from it.Goid luck. Keep us posted.

AL especially if she adjusts well with your first Respite stint and she can afford it. Let that be your guide.

I am 3 yrs in living with Mom and 5 yrs in doing her laundry, finances, cleaning, taking care of her car etc etc. Would I do this again knowing what I know now? Not really sure as Mom was my best friend. I say "was" because her bad days are more frequent now as she declines mentally. It's heart breaking to watch everyday.

NH's have a stigma for our parents generation. Back then it's where you went to die laying in your own feces...the whole place stinking to high heaven. These days they offer socialization and activities...hair and nail salons....so much more of a community setting.

What I am sure of is so many negatives for me and some for her as well throughout this journey. I feel my mental and physical health slipping....am so exhausted sometimes that I think I'll never recover and then I do. I was an avid skier, hiker, cyclist and world traveler prior to this. That has all come to a screeching halt.

Our relationship has suffered. We have always been able to speak our minds...disagree and ultimately agree to disagree. Thus our closeness over my lifetime. Thankfully she to this day is so forgiving and loving despite the fact that I am often short tempered with no patience at all. The guilt of it all is often overwhelming.

If we are being honest here I think alot of us take on the Care-giving Role thinking, hoping and praying that a peaceful end is near. We take the gamble. Some of us win ..some of us lose. Always have a solid back up plan.

When they sent Mom home post stroke 3 yrs ago they insisted on 24 hr care. Took me by surprise...had to get 3-4 aides in a hurry....was leaving hundreds of dollars in cash behind the microwave ....long story short....2 of them would only take cash. Had no idea how illegal this was. Office of the Aging said to just keep meticulous records ...yeah right! I did but am not sure how Medicaid will view those transactions should she need NH care eventually.

I wish you the best...

The most stressful time I had with my Husband was when I took a vacation.
I put him in Respite for 3 weeks. My greatest fear is that I would not be able to bring him home.
The day I picked him up I arranged so that I would get there just as they were served lunch. I went o his room got all his clothes and other items and put them in the car. I went into the dining room and got him, we went to the car and when we got home he went right to his recliner and sat down just like normal. Blew my mind!!
Every person is different.
If you plan on putting her in respite every few months that might be a bit stressful. Not to mention confusing.
If permanent living arrangements can be made it would be better. Less stress for you as well as her.
If keeping her at home is what you want to do you are going to have to plan on caregivers for longer periods of time and depending on her I have known some people that have had to have them 24/7 since their loved one wandered.
Lot of planning and thinking to do. Break down the Pro's and Con's as well as how much each costs. What can she afford? Will you have to apply for Medicaid for her? A lot of places will accept Medicaid if there has been at least 1 year of private pay previously. If there has been no private pay the waiting lists are VERY long.
Not a happy discussion but when you get your break and Mom is in respite this might be one of the things to talk about. And while you are at it talk about your own futures, what you want, what you expect the other to do, what you want or expect your kids to do if you have any.

What kind of help are you looking for with Mother? Talk to her in the best loving manner that you can and make sure you ask her how she feels about meeting new friends and having a great time with others who love her as well? As far as "breaks" are concerned, you took a break to seek out solutions and that is a good thing. If you can afford a caregiver to watch over Mom, do that if your conversation goes no where with her. Whatever she thinks about the house being hers and WHATEVER, just know you cannot go wrong; in this life or the next; putting her needs first.....for the duration of her life!

I can SO empathize with you as we are going through this with my Mom right now. It truly is the hardest thing I've ever done and sometimes I feel like it's going to kill me first. It is very helpful to hear from others who have already gone through the tough time and come out on the other side with positive stories. We were going to go the Respite route first and then have Mom stay if she made out OK. The AL facility that we liked best, however, didn't think she would ever settle in as she would continue to believe she was going home. I don't know if that is true as her memory of things is quite fuzzy but we're going to have her placed on a permanent basis at their recommendation. If it doesn't work out though, we'll bring her home and figure something else out. This facility doesn't have an application fee or penalty if the person leaves - just one month's notice (rent) which I thought was reasonable. I am really hoping she will learn to love it and be happy with other people around. The main thing is that she will be safer and the constant worry about something terrible happening when she's alone will be gone. Getting from point A to point B, though, is awful!

Mom doesn't know yet that we are getting things set up. That's the hardest thing for me - the guilt associated with going behind her back. I have recognized, though, that her dementia won't allow her to think through things clearly and it's just a matter of time before she falls again and gets hurt worse than in the past. Like her doctor told her, if that happens, the choice of where she can live might be gone.

I would love to just be her daughter again and not the nag that keeps asking if she took her pills. How great it would be to sit and visit without worrying if the garbage needs to go out, the catbox cleaned, the refrigerator emptied - and on and on....

Best of luck to you - let's hope we both come out of this with postive stories to share.

I don't think anyone can make a blanket statement about how those with dementia handle respite because each person is an individual and their personality and past experiences are going to influence how they react: a person who is always trying to be helpful and not a burden will understand the need for a vacation better than someone who feels entitled, someone who travelled and stayed at hotels and resorts is likely going to fit in better than someone who never slept anywhere but their own bed, someone outgoing and gregarious is more apt to do well than a shy introvert. Just take it one day at a time and look at this respite stay as an interesting experiment and learning experience. (And enjoy your free time!)

Have a needs assessment done and look for a facility that has different levels of care so she won't have to move again.

Imagine being her daughter and all you can do for her when you are not burned out from being her 24/7 caregiver. You will still be her caregiver, just in a different role. Advocating is hard work, every place says they love us, until we advocate. Just a heads up.

You should not feel guilty, you gave her 8 more months at "home" and it is good for seniors to have peers to spend time with. Do your homework, visit and really watch, are people happy, is the staff happy, do they offer activities that she can participate in, transport, etc.

God give you wisdom in this decision.

PS: it will be the hardest thing you will ever do. I bawled like a baby but is was truly the best thing for all. Hugs!