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More specifically, if you do get an opportunity to go somewhere and your "patient" is left in good hands, do you feel guilty for taking that time away? Just curious as I am rather torn between responsibilities and respite time. I could sure use it but even if he were healthy enough to travel, it never really has been "his thing". Thoughts?

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I had written some stuff. I deleted when I saw the post was from May. The OP only asked this one question and never responded to the replies given.
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Reply to JoAnn29
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What is the cost of respite care?
Is it extra, surcharge because it is short term or is it a little
less since you are uti!izing excess capacity?
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JoAnn29 Sep 16, 2022
This all depends in the area you live in.
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I would like to have a week of Respite Care but don’t know who, where or the cost. No family member will do it. No I would not feel guilty. He would be in good hands.
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Reply to Pisgah1932
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ChoppedLiver May 11, 2022
Try googling the words assisted living respite See what pops up. Start calling. Ask for someone to help you. Admit that you know nothing if you truly know nothing. When I started calling, 2 of the places recommended that I call a referral agency and they each gave me a name. I called the referral agencies and when asked, told the person I was referred to, about the other one also. He/She asked me a lot of questions that I didn't have the answers to. For instance, they asked, does your Mom need Memory Care or just assisted living (at that time, my Mom's dementia was not visible to me)? Is she ambulatory or not? How long do you plan on going away? How do you plan on paying for the care? Does she use prescription drugs. How often? Are you looking for in-the home or at a facility?

From there, with a little of pressing, they will give you some numbers. I always asked for a daily rate which came along with a lot of "ifs" and the minimum number of days required.

It takes time and patience. I never got all answers from the first call. Sometimes I never got return calls. Frankly I was busy enough chasing down leads without having to hunt people down so that I could give them money.

It was hard and time consuming. I visited the ALs. However, once I had the short list and the basic information, it was a lot easier. In addition, by the time I put my Mom permanently into MC, I knew which AL/MC centers were not a fit.

Google is your friend.
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The trips my husband and I take are all to visit one of our three children and help with 2 sets of grandchildren. My son is getting married this summer. He is in CA. Right after we will go to Utah and help my daughter and son in law as the daycare their children go to closes for some of August. We are fine with that being the nature of our trips.

Every time I go away I worry that this could be the time my mother declines further but if I didn't go I would have missed so much family time. My children generally make it to us at least once a year. My mother is in SN. There isn't any other family to deal with any issues. I suggest you to do what you need. I often feel I am kept hostage by my mother. That may sound cruel but there is very little quality to her life but she seems to want to live on. She has defied so many odds for so many years.

I just can't feel guilty anymore about traveling. I am doing it for a positive reason not meaning that should be the only choice. Even if we are not physically responsible for all the day to day care there can often be a huge emotional drain. I can get so exhausted having to advocate for each new issue and dealing with a staff doctor who often has differing opinions which are not always correct such as insisting my mother see a dermatologist for an issue that is then ruled out as a possible course of treatment by the dermatologist.

Anyway sorry to rant on. I feel you should give yourself the break you feel you need and deserve.
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Reply to Riverdale
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Over the years of caregiving, I took vacations with my mom, used family members and hired caregivers.

I needed the break (and so did mom!).

Once I had my sister stay and when I returned, Mom asked me to never leave her with my sister again. I didn’t.

As for caregivers, when I was gone I hired 24-hour coverage. Friends checked in. I felt very comfortable and relaxed because I was getting regular feedback.

When I returned, both Mom and I appreciated each other more.
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Reply to ACaringDaughter
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I don't know whether I am unique or not. When I started taking care of my Mom, people would suggest that I take respite because she would frustrate me, my temper was getting short, etc. In some ways, for me, it was not too different than taking care of a toddler. During my adult life, my Mom and I could never stay in close quarters to each other so doing this caregiving thing was a new adventure, especially for me.

However, I wondered that if I took respite, upon coming back, whether I'd have the patience to deal with her anymore.

Therefore, wherever I went, I included my Mom and she was "happy" to just go along. and I was happy to have her along. (When I had my daughter, I pretty much included her in everything I did other than go to work.)

When COVID subsided, I had the opportunity to temporarily work for a month at the job that I left when I signed up to care for my Mom.

I put my Mom in respite and away I went.

When I came back, I got right back into the swing of things. However, less than 2 weeks later, I made the decision that I couldn't do it any longer and started looking into permanent AL/MC for my Mom.

I really do think that the time away from her, made me realize what my mental state had gotten to. It took more than a few days to switch out of "turn on a dime" and wait for the next shoe to drop. It took more than a few days to realize and execute on what I planned to do 2 days into the future. I could even plan to do more than 1 thing on the same day! The idea that I could actually plan on what to do for 8 hours of my life, took me days to acknowledge.

Respite is a good thing, like a vacation is a good thing from work. However, for me, after respite, I no longer had the 24 hour patience with Mom.

In some respects this was a good turn of events, as we got my Mom into a MC before the waiting lists started.
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Sooner51 Sep 23, 2022
Great answer..I truly appreciated your remark you were able to do more than 1 thing in a day...That is wonderful..I am preparing for a total knee replacement --I am a widower (1st time I have used that term) thus I am trying to arrange for my after surgical care as well as my 97 y/o mothers care...my medical group is ready to provide " after care" involving couple hours a week at home b4 I start "real" therapy which could be close or not so close..to home...doing more than 1 thing in a day sounds awesome.
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CelticGrace: I could not take time away because the house was my late mother's in a different state than mine. I was providing care for her, living with her.
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Reply to Llamalover47
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My brother lived with my mom & took care of her when he was not working. I took the daytime shift M-F. He would ask me to help watch mom so that he could do some weekend activities with friends. It was a way for him to get some "ME" time. Everyone needs a break to help prevent burnout. Get coverage and enjoy your time off.
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Reply to ToniFromRVA
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Nope. No. Nada. Haven't been on vacation. Guess that will wait for a while.
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Reply to Tynagh
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Many facilities offer respite stays so their care-takers can be free. Call "A Place for Mom" and see if they can find something near you. Family can visit her, rather than becoming her caretaker.
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Reply to ConnieCaretaker
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Maybe do a weekend at first and see how everyone handles it, even you.
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Reply to Debstarr53
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GO and don't call them to check in. They can call you in an emergency. You need time for you too.
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Reply to Jasmina
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Glad you asked. I was told by someone years ago that you can't pour from an empty cup. That means if you get burned out, who will take care of your LO? No guilt. Go, enjoy, sleep, read a book, take a bubble bath, call up old friends and talk til the wee hours of the morning. When you get back, you will be refreshed and ready to share your love in a more profound way.
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Reply to Ella2021
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The short answer is GO! The long answer is GO and add a couple of extra days for yourself!

It may have been a while since you've been on an airplane (the service has gotten worse), but they will always tell their passengers that in case of emergency put their oxygen masks on first before they help the person in the seat next to you. Put another way, take care of the caregiver so the caregiver can take care of the patient.

Whether you're the CEO of a Fortune 500 company, the manager of a Mcdonald's, or the Caregiver of a loved one, everyone deserves a vacation, or put more aptly - a reward for a job well done.

As the manager of a boutique home healthcare agency, I deal with this all the time. Whether it's my paid caregiver who needs a vacation or the client's family calling to arrange care because the family caregiver is going away, nobody can do 24 x 365 x years of service and expect to stay on top of their game. This trip sounds special, and I would bet you would regret not going.

So why am I so vehemently in favor of you getting out of Dodge? Two things you wrote in your question. First, you said, "your patient" will be in GOOD hands" and "travel, it never really has been "his THING". From those comments, I would guess he is encouraging you to go and you have the support you need to make sure he's well cared for in your absence.

Put your oxygen mask on and have a great time! ~BRAD
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Reply to Goldstar
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Our youngest sister is our parent’s only caregiver, no outside help unless PT was needed, and then getting rid of the help ASAP, is what makes mom happy. Both parents have official dementia diagnosis, mom is incontinent, and has very, very difficult mobility. Both mom and sister are heavy, using a waist belt to get mom up, and lift chair. Dad lost his weight due to illness years ago. There is no mention of the wear and tear on our almost 50 year old sister, just supposed to believe she can do it all. So far she has been, about four years since diagnosis, but health issues began eight years ago, with dad, then mom, now both. 

There is a big gap in our ages, me being the oldest daughter, with two sisters in between. I haven’t worked in eight years, and I’m still waiting for my sister to let me help, beyond allowing me to cater their meals, for almost three years. I was allowed to make homemade meals, and deliver them, but beyond our family helping to relocate them, from a split level to a more manageable condo, she wants to “do it all”, have full control and has repeatedly let me know they need no help. NOW, she must ask me when she needs help, cause I no longer beg to help. It hurt to be told not needed. It feels like as long as they have her, they don’t miss the rest of us girls. I have never doubted their love for me, but they never call. 

It’s frustrating to feel like so many years have been wasted. I’m early 60’s, and know any minute the phone could ring, and we will finally be at crisis level, and hoping our sister, isn’t the one who collapsed. Truth. Our parents always remember my name, and the difficulties are more centered on poor mobility, many health issues, and isolating for covid, as they are still going as few places as possible, plus many winter months, makes getting out harder. I miss seeing them.

Soooo….the only vacation my sister ever planned, after our parents health went downhill, was two weeks, traveling across country, taking mom with her, leaving dad at home. She needs full control, and when she told us about those plans, I was shocked. We’re never asked for our opinions, only told her plans, and that we can “ask questions”. The closer that trip got, the less it seemed mom would be capable, and she wasn’t. 

I’ve had many years available, to help enrich my parent’s life, but she seems to be waiting until our parents are completely out of it, for us to get any hands on care, dealing with the caregiving issues she has for years. She is who they are comfortable with, they’ve always been a primary family unit, together. I was told that had no effect on MY life, it is her story and I was forbidden to say she never moved out of their home, that it is only “her story”. Nothing could be further from the truth, cause she is the only one that knows our parents wishes, and she is the one in charge, cause they put it all on her, and why they felt this plan was best, well I wasn’t there for that conversation, but she is who they are comfortable with. When she needs more help, I will do my best to help. 

Please, do your best to accept help, if you have family offering help. Go on that vacation, if you can. Don’t allow yourself to become the only one your family member wants help from, cause my folks never gave this kind of care to either of their parents, and have no idea what they ask of her. I love them all very much, but waiting for the other shoe to drop was hell. I spent too much time, in the beginning, worrying about the future, after a lifetime of sober, one day at a time living, so now I focus more on today, again. Take care of yourself, cause that matters too.
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Reply to Odaat59
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Since I didn't have any other options I sent my mom to a nursing home for a respite stay, the first time I was checking in daily but the second time I was out of the country so that wasn't possible - on the whole I think it was better not to know what was going on😕. I know it's hard to put down the reins and trust others to care for our loved ones and there is no doubt that things will be done differently than we would have done them, but time away from care and responsibility is vital if you don't want to burn out. Go!
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LakeErie May 10, 2022
This is absolutely the best option. Mom may end up liking it and not come back, even better. No need to call, just put it out of your mind and have a great trip.
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