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Mary, I remember repeatedly getting the advice when I first started caring for my husband with dementia, "arrange frequent respite." And I would roll my eyes and think, "sure, and while I'm at it I will arrange breakfast in bed 7 days a week."

And now my advice for people new to caregiving or contemplating bringing a parent into their house or deciding on whether to attempt caregiving or not is "arrange frequent respite."

It is difficult. Many things about caregiving are difficult. But it is also necessary. If your loved one was at risk for bedsores and had to be repositioned every 2 hours, that would be difficult, but you'd find a way to get it done. Respite for yourself is difficult to arrange but it is as essential as other caregiving activities.

No one can be responsible for another adult 24/7/365 and retain their sanity. Can't be done! How important is your sanity?

I found a volunteer service in my community that sent someone to our home for a few hours a couple of days a week, to sit with my husband. The rule was, though, that you weren't supposed to use that time for errands -- you were supposed to have lunch with a friend or go to a museum or take a long walk in a part, etc. I'm sure many of us cheated and went to Target, but at least we were getting out of the house! See if your Area Agency on Aging can refer you to any volunteer organization in your community.

I enrolled my husband in an Adult Day Health Program where he spent several hours a few days a week. I worked from home, and this allowed me to fully concentrate on that and also to schedule my own appointments, etc. And sometimes I met a friend for lunch.

When he declined and the day program was no longer suitable, we got a PCA to come into the house. Mostly she cared for him while I worked at home, but sometimes I took time for me and left the house while she was there.

I went for a long weekend with a friend, while my husband's out-of-state daughter stayed with him.

When my sister and her husband took in my mother I knew the value of respite and I asked to have mother stay at my house one long weekend a month. Another sister did the same, so the caregiver sister could plan on some time to herself at least twice a month. A third sister went to their house to stay with Mom for a few hours a couple times a week. Another relative stayed with Mom Saturday mornings during bowling season. If you have willing family, accept their help! Unless they have been caregivers they may not know what to offer, but don't write them off without discussing getting some help from them.

You need some time to yourself. You need to be able to do things with your son. These are essentials, not luxuries.

I hope other caregivers can share what they do/have done to arrange some respite for themselves. It is a challenge, that's for sure!
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Yes and you are not alone.
I care for my elderly grandma. I am able to work but my private time has diminished since moving in with her.
Try and take a walk, sit outside, do something you enjoy. If you don’t take care of yourself then who will?
Your life is just as valuable as hers.
Hugs
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Yes Mary I do. I just paid $80.00 to be able to do five hours of shopping and run an errand.That was my second day of this year, and I still did not get everything done. Plus I worried the most of the time I was gone.
I had to hire a companion to sit with the wife. The last time I hired a companion was so I could have stints put into my leg. No real rest on that one.
As she gets worse I will have to do this more often since I don't fell comfortable taking her into public places.
I wish you the best.
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jeannegibbs Jun 2018
OldSailor, have you tried to locate volunteer help to sit with your wife? Contact the Area Agency on Aging, and see if they have any resources to recommend. Some areas also use the phone number 211 for information about resources for caring needs.
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Been there, done that. And I am trying to get out, which is difficult due to my own medical issues, but I am starting to get the people in my life to "do things out of their comfort zone" and hopefully this helps them.

Again, I can't offer any "pearls of wisdom" but I know how IMPORTANT it is to maintain family and friends!
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I spent the first 3 years caring for my mother with copd. The first two were fairly good and fun.. Then she started depending on me more and more. I never got any me time and if I did manage to I worried the whole time. Then dreaded going back so that's no fun. I do everything around here while she sits in her recliner and watches TV all day. And I mean everything! She recently had a fall and broke her right hip. In rehab 2 months and I enjoyed my time off. Now she's back home and even more dependent on me.. she fell again last week off the bedside or should I say chair side commode spilled all over her the carpet at 5am. I now use a baby monitor and I'm getting woke up all through the night no rest no decent sleep I'm frazzled. Working with her care team from rehab to have her placed in assisted living I can no longer do this not losing my life! If your fortunate enough to find someone to help you get any respite it might help. No one in my family will and I'm an only child with my own health issues. Good luck to you
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jeannegibbs Jun 2018
I certainly hope the assisted living will become a reality soon! Or a nursing home if that is the level of care she requires.

After an initial adjustment period, my mother became quite content in NH, with her family coming in to visit her, and all of her care provided by professionals.
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I spent the first 3 years caring for my mother with copd. The first two were fairly good and fun.. Then she started depending on me more and more. I never got any me time and if I did manage to I worried the whole time. Then dreaded going back so that's no fun. I do everything around here while she sits in her recliner and watches TV all day. And I mean everything! She recently had a fall and broke her right hip. In rehab 2 months and I enjoyed my time off. Now she's back home and even more dependent on me.. she fell again last week off the bedside or should I say chair side commode spilled all over her the carpet at 5am. I now use a baby monitor and I'm getting woke up all through the night no rest no decent sleep I'm frazzled. Working with her care team from rehab to have her placed in assisted living I can no longer do this not losing my life! If your fortunate enough to find someone to help you get any respite it might help. No one in my family will and I'm an only child with my own health issues. Good luck to you
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