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Mom will be going into a nursing home for respite care for 5 days. I have to go out of town, so I cannot care for her then (I am the main caregiver). I am so worried about how she will react, though. I am expecting the rest of my family to go visit her, hoping to ease some of her anxiety (that I expect she will have). I don't know what to tell her about going, other than to tell her it will be a vacation for her. She is 94 and is showing some signs of dementia. Will sending her for respite care make things worse? I won't know if there is a bed available until a few days ahead of time. So, if there isn't one available, I will have to hire more in-home care to cover the time I am usually there. It seems she has an issue when new people come to the house. I feel like I am between a rock and a hard place.... Any suggestions? What can I expect when she gets home?

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Mapotter: I understand completely why your mother wouldn't eat what was served to her. My late mother was served a taco that she had to assemble. Good grief~~~she have never eaten a taco in her life!
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cwillie, I understand there may be issues with someone there for respite care, but all the people I ended up talking to there didn't even know she was only there for 5 days.... Maybe they just didn't read Mom's chart since they didn't do the simple things I asked, like walking her.... I am glad you it worked out better for you the second time.
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CW, by the time we've had 3 or 4 parents in NH care, we might get good at it, right?

That's the beauty of this site.
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I think a lot of the problems with respite stays is miscommunication - the facility "salesperson" fails to understand that the average person has no idea what is going to happen and what level of care to expect, and the family often come in thinking things like medications schedules, toileting and special dietary preferences and needs should be obvious. There is also often a disconnect between the front office and the staff on the floor so that even if you think you've covered all the bases things get missed... this is also a problem with new permanent residents but it usually gets straightened out over time, with a temporary stay there is no motivation to fix anything because you are leaving anyway :(

After my mom's first disastrous respite stay I wrote up a formal complaint and asked for an appointment to go over each item on it. When I booked our second stay there they were astonished I had returned, I figured they were on notice and better the devil you know, and I thought I was was also better prepared with a list of needs and expectations. There were still things I didn't know until mom entered a NH permanently - for example I asked that she use her wheelchair exclusively for two weeks, I never knew I could have had her getting PT instead and as a result she lost her ability to walk.... miscommunication again with disastrous results.
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Just posting an update. I was so upset the day Mom was picked up for respite care. I kept in touch with my siblings during the four days I was not in town. I ended up calling the nurses' station when I heard of some issues -- like no water in Mom's room, making sure they walked her. (I want her to walk as long as she can, even if it isn't far.) In the four days, I talked to 4 different nurses who were "filling in."

When I went to visit Mom, I got off the elevator and it smelled like urine. "Residents" were sitting in the hallway, strapped to their wheelchairs. Mom was in a big highchair-type wheelchair, sitting in the "dining/activity room" by herself. After she ate, I asked that she be moved to a different wheelchair so I could take her for a stroll. When the aide was doing that (by putting her on the toilet and then into a new chair), I asked if she has been walked. The aide told me that she can't walk. After I got Mom back to her room, after our stroll, I got her up out of her chair and walked her.

Mom didn't eat much dinner that night. She didn't like it. (I don't blame her.) When one aide saw that Mom didn't eat, she said she had 7 other patients who wouldn't eat it. What does that tell you?

I debated whether or not to bring her home last night. My siblings wanted me to let her stay one more night so that I could get some sleep. (I hardly slept while I was away because I was worried about Mom (and other family issues that were going on).) Respite care was supposed to alleviate stress for me...

While I was sitting with Mom, the nurse came to speak to me to tell me she found Mom sitting on the floor in the morning. (She fell getting out of bed.) Where was the alarm?? I was told that they cannot hook it up unless the family requests it....

While talking to the nurse, I was upset seeing Mom in that situation. She told me that if we decided to send Mom there permanently, they had 30 people taking care of the patients, so she would be well cared for. I couldn't even find out whose shirt she was wearing!! It definitely not hers!

Mom came home this afternoon. She was picked up around 12:00 by ambulance transport. Mom came in smelling like urine. She was still in her pajamas (and it was chilly outside) and her depends were not changed. I am not happy and have called the facility to complain.

My one brother thought the place was a nice place for short- or long-term stays. Really? I wouldn't send my dog there. I am glad Mom is home.
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pargirl, just curious about the falling if you have had experience with that... The PT who came to evaluate Mom recently did tell me that the falls, even if there are no fractures, contribute to decline in the elderly. I understand how major falls could, but do minor falls as well, do you know? Mom had 2 minor ones yesterday. I am just curious.
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With my mom (dementia/alz) I thought she was only going to be for just a few weeks while my dad was recovering from heart attack. She ended up staying there until her passing for 7 years. But anything that was not the "norm" for her or her routine even at home would throw her off. Just be aware with dementia even early on can throw them off whether home or in a facility. Also, every time something happens a move, fall, illness....etc, they can decline a little more. It just can't be helped and is a part of aging and the disease. Good luck and God Bless.
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First and foremost, the Medicare bed must be available. As your mother is 94, it's difficult to say that she will easily adapt. I don't want to speak wrongly, but be aware that she may not. Then again if she has been a social person all her life, she may adjust.
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Thank you all for your responses. I wish I could comment to each individually. So many good stories, so many sad ones.

Mom cannot walk without assistance now. She is also having Sundowner issues. Last night, she cried for an hour. My brother said she was saying something like 'someone is bleeding and has to go to the hospital.' (She has aphasia so you rarely says the right thing or word you can understand; but that was the gist of what she was saying.) I told my brother that she was probably seeing his arms and was anxious about it. (He has purpura and it has been bleeding.) I told him to cover his arms, but he didn't.

The other day I showed her some old photos. She knew her mom and dad and others. But, later she was upset and kept saying that everyone is gone -- 'my mom, dad, husband.' I tried to calm her down and said 'but we are all still here.'

That may give you all an idea of how she might respond (and how I fear she will respond) to going to a home for the respite care.

I did check out the facility, which seemed nice (you never know what the staff is like until you stay anywhere...). Medicare will cover 5 days through the hospice program.

BUT, even though I mentioned it to my siblings and asked for their input (and they all seemed okay with it (except they were concerned about Mom's reaction), my brother (who lives with Mom) told me today that I never said anything to him. (He is having memory issues...) He is thinking he would rather have Mom stay home (and that he would be home), even though he is limited as to what he can do, so I would have to get more in-home care. I told him to think about it overnight and let me know what he wants to do since he would be the one to deal with it.... Ugh.
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Yes, I have experience with this. It turned out fine for me. I get 1 week a year paid for from mom’s insurance. The only thing my mother did not like was the caregiver was Spanish so all she made was Spanish food, which my mother did not like at all.
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wow.... Some of these stories are terrifying. Agingmyself -- I'm so sorry for your dad and for you to find him sleeping naked and in the cold! :( Marymerry, I'm envious that you have a sister who would stay with your mom in the NH. Neither of my sibs would do that.
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Could you explain the situation to her doctor and ask that he "recommend" a week's stay in a nursing home setting? He could say it was necessary so professionals could evaluate her medications, mobility, and general well-being. Tell her this is a blessing as you'll be gone at that same time.

Something very similar to this happened with my husband who was suffering from dementia. I had broken my leg and this respite was very much needed. He accepted the explanation without question.

I hope all goes well for you...
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I took my father with me to tour 2 places. He is 87 with dementia. He was fussing about why are we here. I told him I needed him to be somewhere he could be safe, cared for, fed and medicated while I go see my son in another state in college. My father seemed to calm down and understood. He got moved in and ended up liking the Assisted Living. However, I had to do again with a nursing home after his mobility got bad and bed bound. It was not a good experience at the nursing home. I usually have his caregiver or other family and friends visit him while out of town. This helps.
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My name is Diane, I am an RN and spent 1/3 of my nursing years with geriatrics. I was a asst dir of nursing at Manor care in Tucson Az, great place we took respites all the time. You have to go and check it out to see what they offer mom. Usually takes a day for mom to get used to the routine but our clients loved the attention they were getting in a different way then from the family. Believe me you will be rested and so will mom, have a great respite yourself you need it.
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Do it! Give yourself respite & let her stay in nh ..if you hire someone new they probably won’t work out as they not familiar w her & you won’t be home...stuff can disappear etc . More worries if she is home. Aides fall asleep & look at phone all day
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You might check with your local Area Agency on Aging about Respite Vouchers. These may cover some (I repeat, some) of the cost to pay for in-home care or nursing home respite while you are away. It's not a lot of money, but it really does help the caregiver to get away for short periods to de-stress.
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In our state, Medicare pays for 5 days respite for Hospice patients, I think it's every 3 months.
My brother was fine with it, and I think his wife took advantage of it as much as possible to get some time to rejuvenate.
My father-in-law's experience: Hospice arranged for his 5 days in local NH and suggested that family not visit. NH welcomed him warmly; he thought it was a special facility owned by his doctor rather than a NH. He was unable to understand the call-button concept, not too coherent, and unable to feed himself. The family set the heat at a level his roommate agreed would be comfortable. His son and wife came in the next day around noon to check on him. His bed was lowered to the floor. He was naked. The heat had been turned off, and he was shivering. Wife and son cared for and dressed him, and it was over an hour before anyone on staff even came in. His roommate commented that it had been cold all night. The curtain was pulled between them, so he didn't know Dad was naked and freezing. When staff finally did wander in, all they knew was that he didn't eat his breakfast.
MIL called Hospice and told them to get him out of there PDQ.
After 6 months, MIL had to have cancer surgery, so she agreed to 5 respite days at a different NH. Thank God, the new facility was great. We did, however, wander in and out at all hours just to be sure. She didn't recover as quickly as she thought, so she agreed to another week or two at self-pay.
And, his condition actually improved from what it was at home, since he was getting professional care that they just couldn't do at home. He's still there 10 months later, and everyone is better off.

My advice, then: Take the respite time. Ask friends and acquaintances to visit and check on her. You've already investigated the facilities, so you feel comfortable with them (a step we didnt know we should do the first time).
She may actually be better there!
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My mom still has her mind. (She tells me everything to do.) She gets upset any time she has to go anywhere. Has been that way for years. I went on respite and sent her to the top notch NH around and she came home with stories of terrible care. The next time she went, my sister went too, and spent the entire time with her...ate there, slept there, stayed there. They both were treated with utmost care and respect. She observed everything, helped explain to the staff and to Mom every issue that came up. Mom came home bright eyed and happy and glad to go back. We decided that in order for it to be a good experience, someone will need to go with her. We learned that the tales she told were not accurate and that our perception of the state of her mind was not so accurate either. We found a way to make it work for us. I am so thankful for hospice and for a sister willing to fill in so respite can work. God is our provider and He has a plan for our deliverance. I am so in the middle of the problem, I did not come up with the answer. Someone outside came up with the idea. I think we who are in the problem need others to give ideas and this site is just that. Thanks to
all of you who share your ideas with us. Blessings to you all as you give.
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What does one do when the elder refuses to go? My wonderful stepmom qualified for a week of respite each year through VA - dad would stay at a VA facility. Even though a few times my stepmom needed the week for surgery or some health treatment - my dad adamantly refused to go. [always has been a selfish b@....d] Finally my stepmom laid it on the line - go this week or you will be in the nursing home permanently as my health will break down and i will no longer care for you. He made her life hell when the week was over. [each  year same fight]

Can someone come in and give them a sleeping aid and cart them to respite if they refuse to go?
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My mother’s adult day center social worker arranged for a 14-day respite stay at a nearby nursing home. Not sure how other states handle respite care, but Pennsylvania authorizes 14 days per year.  She enjoyed her stay and I enjoyed the much needed break
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Is your Mom appropriate for AL instead of SNF? She’d likely enjoy herself there much more, so the transition would be much smoother (she might want to stay). Also, most ALs are accustomed to respite stays. Don't assume Mom needs more care than they provide, ask.
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I have my caregiver take my Mom to a memory Care NH occasionally for day activities. And they offer individual day stays. I would absolutely use that option. In fact, I'm redoing mom's shower and will use some days visits for hygiene. I have just been reinforcing the in AND out parameters.
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But that was on him. all went well. The ppl were great and the food was ok.

He was well-cared for, I moved us in, he came back to new house, and life went on.
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yes, I sent my husband for ten days so that I could move us from PA ot NC. It was fine but he was in terrible shape at the time so not a great experience.
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I placed my Husband in the Memory Care facility where he had been going for "Day Care" I figured he "knew" the staff and the surroundings.
I would be gone for 3 weeks. (My first vacation in 5 years.)
In my heart and mind I was afraid that being in the facility for that length of time I might not be able to bring him home. I though maybe he would be so set there that it might be more of an upset to bring him home.
I had nothing to fear! The day I dropped him off they suggested I stay a while to get him into bed as was our usual routine. He would not settle down and wanted to leave. I left him. I figured he would get into bed when he got tired or he would fall asleep watching TV. Picking him up I waited until lunch, while he was eating I arrived and packed up all his clothes. When he was done eating I asked if he wanted to go home, he got into the car and when we got home and got him into the house he settled right down into his recliner to watch TV.
At this point his dementia was pretty advanced and he, for the most part was non verbal. But there seemed to be no stress on his part. He settled right back into the routine we had had previously. When I brought him back for "Day Care" he seemed not to be afraid I would leave him there again.

Your Mom may be upset. But depending on how severe her dementia is if you can explain that you both are going on vacation. She may take it a bit better. If you have a bit of time before she stays can you bring her in 1 or 2 days to see the grounds, maybe have lunch. This way she may be more comfortable when she stays there.
The important thing is ...time away is vital for you.  You need to take a break.  This is important physically, mentally and emotionally. 
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I put my dad in respite care a while back for about a week and a half. I think he probably had more advanced dementia than your mom does currently, though so it is hard to say. To be honest, I think every time a change of setting occurs (hospital visit, respite care, etc.) it does put a dent in their mental status. For dad, I just explained to him that I had to go away for the week, and that I wanted him to stay in a place where they could make sure he'd be ok, I didn't want him to have to worry about cooking for himself and remembering the take his medicines etc. (although at that point he was unable to do those things on his own, I voiced it as if "I know you can do these things on your own, but i dont want you to have to worry about it) He seemed OK with that explaination. Do I think the visit seriously progressed the disease? No, not especially. But I do think it may have worsened things a bit. Sorry to say that,but it is a risk. That said, everyone needs a break sometimes and if you don't have family who can step up for that time, you have to do what you have to do! At the end of the day, anything COULD affect the dementia (a fall, a cold, etc.) and its difficult to pinpoint exactly what it was, so you really just have to accept that you are doing your best.
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If it's a nice nursing home with nice people staffing it, your mother will be fine. She may be a bit muddled, during and perhaps for a little while after, but she sounds less resistant to the whole idea than my mother was; and even so my mother did nothing worse than sulk in her room with her arms folded, and thus missed out on what could otherwise have been an interesting, companionable few days.

Depending on how advanced your mother's dementia is, and how well (or not) she retains information, you may decide it's better not to try to "prepare" her for her respite break. Put it on the calendar by all means, be open about it if the subject comes up, but don't try to make her look forward to it because just trying to remember and plan her stay will be stressful for her. Have her suitcase packed ready, and a box of familiar items, and then if/when you get the go ahead you can just treat the whole thing as a matter of routine. If you take it in your stride, she's more likely to, too.
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I recently put my mom in an Assisted Living Home for respite care. I checked out several facilities in my area that was suggested to me by A Place for Mom. Once I selected one I took mom for a visit. The facility was a great help in making her feel welcomed and excited about her coming for a vacation. I always referenced it as a vacation for her. Each caregiver at facility had 7 individuals to assist. Plus nursing staff 24/7. I had family members check on her while I was gone. She loved being with people her age. AL had a lot of engagement activities planned each day. It turned out to be great for mom. I plan on sending her again.
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Not personally, but my friend had to do this with her mother when she bought a new home. She (Mom) had been on HomeHospice and they took care of placing her for the time-frame my friend needed to get moved into a new house.

The flip-side is my friend never brought her mother home again, and she is still in the Nursing Home today.

Another friend had to put her DH into respite/nursing home care because she needed knee surgery. Her DH didn't do well.

You do what you have to do and just keep praying. Unless you are absolutely sure about hiring home-health-care, Mom would probably be safer in the NH, just my humble opinion.
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I've been looking into this as I need to go out of state back to the state we moved from. We still have two bank accounts of my grandma's there plus a bank deposit box that needs to be closed down and emptied. I have a small storage unit that needs emptying so I have checked into having that available. I'm worried about leaving her in someone's care for a few days. She was in the same facility for rehab but that's when she is physically unable to walk so she isn't trying to escape or keep them on their toes. At my house she is free to walk anywhere she wants whenever she wants as long as she uses the walker so her afternoons are spent with much pacing and collecting things as she travels throughout the rooms of the house. It makes me nervous as everyone in this facility is in a wheelchair which she would just try to walk out of ignoring the fact she has no walker. I think I'm just nervous. I'm glad to hear someone had good luck with it having a friend in a roommate. I hope it works out that well for me.
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