Re: Respite
Everyone tells me I need to take advantage of the respite being offered by friends - I have complied several times, however the fact that nothing is going to change with regard to caring for my spouse, especially at night. It’s only going to get more difficult and having an afternoon to do whatever for myself is like putting lipstick on a pig.
Comments
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I think I understand. A few hours here and there does not relieve the core pain I feel as a caregiver. Does it help to be away? Yes and no. Sometimes just knowing I have to go back ruins the time away. Sometimes I feel a bit better for a little while. But there is no real escape from the reality of how hard this is and I am only two years into the journey.
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That is true, nothing will cjange the prognosis but the ability to get out for 2 or 3 hrs and be just a normal person again, doing normal things you want to do without worrying about or caring for someone else can be priceless. It doesn't change reality but allows you to escape the confines of categiving for a little while and that allows you to show up all the rest of the time. You need it. Take the opportunity and thank your friends for the gift because it is priceless.
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If you are given the opportunity for respite, give it a try. Maybe it works for you, maybe it does not. What I have found on this journey is that I have to keep trying different things. The disease keeps changing so I have to keep changing my approach as well. Often, being in the center of the storm all the time, you don't have the best view of what is going on. Being able to step back occasionally can perhaps provide you better perspective and maybe allow you to make better decisions.
I really get annoyed by the friends and family who talk about respite like it is some type of game changing experience. It is not that at all. Respite is pretty small in the big picture. Ultimately, you and your PWD are on different paths and heading toward a different future. At least that is my goal.
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yes it does feel that way. I found that taking four hours once a week did give me the mental and physical strength to go on. Sometimes I just went to a coffee shop and enjoyed the quiet and sipped my coffee or sat and stared at the sky. Can you get help at night? Is your loved one on medication to help with sleep? What stage is your LO in? Could hospice help? Hugs. 💜
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I agree I’ve tried a few times and got nothing out of the carers visits yet so I have put them on hold. I was so concerned and worried when I left for two hours, that my DH was being treated with respect and kindness I didn’t actually like the carers but had no choice. My DH is such a kind and gentle person he wasn’t happy to be left and wasn’t happy when I came back, he said he felt discarded. i felt terrible and selfish. I will try again perhaps when we have another downward spike. It’s so sad but I have nowhere to go anyway we’ve lost all our coffee drinking food eaten no friends.
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Respite care can be frustrating in that you need to do twice as much work ahead of time to prepare for it, and then work twice as hard when you get back to set things straight again. However, it is so vital to sustain ourselves for the long haul. I notice little things- like my breathing pattern gets deeper and longer as I head down the road with that first feeling of freedom. That rich flow of oxygen to my brain just resets my mood and makes me feel young again! Unfortunately, all good things must come to an end, and that ride home just makes me tense up as my breathing goes shallow again thinking of the situation I will be walking back into. But that brief taste of freedom was worth it, and I can dream of future days when I will be free again.
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I pay a caregiver for 2 afternoons a week. (8 hours total) it took many months, and we stopped and started many times when I wasn't happy with the people they were sending. Finally, we found a woman who is 72, doesn't do any heavy lifting but she's everything we need. I think of her as a companion rather than caregiver. She helps with toileting and food and I leave a ton of laundry for her to fold. My husband enjoys their conversations and when I walk in they are talking like old friends. It took me 4 months with her to finally have a good, relaxing outing. I didn't realize until i reflected on the day that my pace had slowed and i had a day just like old times. He still calls me but no longer angry that I'm away.
I encourage anyone who needs a break to keep trying. The right helper is out there, they just may turn out to be something other than what you imagined. Ours was just a one time fill in who we requested as a permanent companion.
Blessings,
jehjeh
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Bridge4, very well said!
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CrossCreek, is there some other kind of help you would like from your friends instead of respite? A hot cooked meal delivered to your house at supper time? Someone to do your grocery shopping? Someone to take your PWD for a long drive or out someplace so you could take a nap? Have you had to give up something you miss that another person could help so you could do that? Is there an in person support group meeting you could attend if you had someone to sit with your spouse? Nothing will change your spouse’s disease. As difficult as it is, it will help once you have some acceptance of that. Then ask yourself what will help you to cope with that reality. Then ask those offering help for what you feel will help.
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I am preparing for a 10 day respite. I am looking forward to my trip and time away. However I too find myself already dreading coming back. It's like a Sunday evening anticipating the work week ahead of me.
DH does somewhat decompensate when he is placed in the facility and doesn't have understanding what it is all about. I however know I can't continue to care for him with out these breaks.
My son used to help care for him with aide coming to the house for few hours every day when I was gone. My son job has changed so he can no longer help in this way. 24/7 respite placement is needed. I guess the good news is that DH once home from respite doesn't remember being gone.
This is a long journey and I know I need to take advantage of the respite care when I can or I won't make it to the end and have strength to go on.
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Good advice
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I just started with respite care. It's only four hours a day, three days a week but that little time gives me a chance to get out of the house, get some things done. Anything long term, for me is out of the question but I take what I can get. I could really use a day off but I don't see that in the cards.
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At first, I felt the same. What's the use, a few hours here and there?! But I had come to appreciate those precious and few hours. Then a friend took DH on a short trip to Monterey, and those few days without caregiving duty 24/7 were absolutely heavenly. So heavenly that I yearned for more. He then took care of DH for 2 separate week long visits at this house, until DH was unmanageable. I didn't realize how much of a break I needed. I believe our friend said I was on the verge of collapse, physically and mentally. Needless to say, this friend and his gift of respite for me was a much needed life saver in the middle of a raging ocean even if I didn't recognize it back then when the offer was made. So if you're given the chance of respite, take it.
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Marier—what kind of a facility gives you a 10 day stay and how advanced is your husband? My husband needs more than assisted living and the memory care facilities don't do short stays? How did you find one? thanks
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Respite - I get 4-6 hours per week from family members. I guard those hours jealously careful to only fill them with what I want to do. It may be errands, buying a treat, lunch with a friend, or even a nap. I can't imagine how close to collapse I would be without these few but precious hours. My only normal left.
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Tucson Anne:
Some Memory Care facilities offer 2 week - 4 week stays although they are very expensive.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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