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It's good that you recognize that you have burnout. I'd explore options for help with her care, whether bringing in professional care or placement. It definitely takes teams and shifts of people to properly care for someone who has advanced dementia, imo. I wish that more family members learned this, so they don't come down with disapproval of other family members. If they don't understand, I'd suggest to them that they read the 36 Hour Day and then see if they would like to take on this responsibility in their homes.
You've received good answers here. I hope my mistakes will give you something to think about:
You and your husband have nothing to feel guilty about. To the contrary: you should be proud of what you've done since "other family members *can't*". (BTW, I say baloney to that--my sister-in-law would deliberately act obtuse to avoid being asked to help us out.)
I have been at this for nearly eight years. A year-and-a half into it, MIL's doctor pulled me into the hall after her exam and told me he could see my utter exhaustion and that MIL was safe in her ALF apartment and well cared for by staff. Further, he told me that she had lived her life and I needed to live mine. I continued to be a "helicopter caregiver" despite his advice; I quit my job to devote myself to her. Now, I am 15-pounds overweight, exhausted, devoid of emotion and mad at myself for not taking care of myself. She will be 95 in May and is healthy and stronger than ever.
Please don't feel guilty about putting you and your life with your husband first. You'll be a better caregiver if you aren't burned out and stressed so much.
Start today by looking for facilities. The transition will have bumps and trials, but you'll have this community to turn to for support!
Good luck and all the best to you and Hubby.
Now you have the job of caring for her. I sounds like she is very difficult to care for. Nearly all of us reach a point that we are no longer able to provide the necessary care, we learn our limitations.
Start planning for placement, identify facilities that will work for her.
Science is catching up and I believe this disease will be less of a burden for some generation, but the time’s not going to come soon enough for you.
Move her into a facility that is equipped for this and concentrate on building a happy end-of-life for your loved one filled with reading her favorite books or garden magazines and looking at pictures of the grandkids or other loved ones and enjoy her time and your own time with your husband.
No loving parent would ever want to know that this is what they’ve become—a burden. If she were in her right mind, she’d be able to tell you so and gladly.