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My husband and I have been caring for his mother with Dementia for a year now. She was initially staying with her daughter who was doing a HORRIBLE job. It seems like things took a turn for the worst the beginning of the year(2019) We found out she was wetting herself at night and hiding the underwear under her bed so now we have her put on a pull-up every night (that's a fight in it's self) she's become more aggressive and not wanting to do what we tell her ie: bathe..brush your teeth...change your clothes the basic ADL'S. My husband and I both work Mon- Fri 7am-4pm. She goes to an adult daycare during the day. Sometimes at night we can't get her to go to bed at all. It's become really stressful but when everyone see's her they look at her and say she looks like a sweet old lady...We are both getting really frustrated and we realize it's not her it's her condition but it's getting really hard to take care of her because we are stressed. Other family members can't help because they don't realize she has to stay on a schedule and they just let her do whatever the hell she wants and when we get her back we're the ones that suffer. We are considering moving her into an ALF with memory care. What are you guys thoughts? My husband and I were feeling guilty about the decision but I told him if ever taking care of her affects our well- being and our marriage we are going to have to move her.

Moving Mom to a memory care facility is nothing to feel guilty about. They have staff that are professionally trained to deal with exactly these behaviors 24 hours a day. There is nothing wrong with that or anything to feel guilty about. If you kept her home with substandard care, burned out and crabbed at her antics, and your marriage suffered...thats what would be unfortunate. And she won’t be in jail...you can still visit, dine, and do activites with her, without dealing with the pull-ups, hygiene, and sleep issues. Doesn’t that sound better?
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Reply to rocketjcat
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labguru2002 Mar 5, 2019
Thank you so much for your support!!
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I'd focus on what MIL really needs and not so much what someone else might say. Generally, other people don't understand what the around the clock care is like for a family member who has dementia. Most people think it just means being forgetful, loss of short term memory, can't find their keys or get lost easily. They don't understand that it's much, much more. Like being resistant to care, refusing to get out of bed, staying up all night, wandering, constant repeating, agitation, delusions. incontinence, It's truly like caring for a toddler, but worse, because they are heavier and stronger and their care will only grow more intense.

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.
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labguru2002 Mar 5, 2019
Thank you for your support and understanding!! I am actually going to get that book, never heard of it
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Dear LabGuru

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.
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labguru2002 Mar 5, 2019
Thank you so much for the support. This forum is really helpful, they understand because they have been through it. Most people who haven't don't. So thank you again!!!!
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Do you think the daughter's horrible care had anything to do with how difficult mom was? Maybe daughter was burnt out and needed more support herself.

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.
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Kate06 Mar 5, 2019
You raise very good points about the daughter's horrible care.
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Seems like it’s time for more care. Just working full time and dealing with this is too much. Best of luck to you and your husband.
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labguru2002 Mar 5, 2019
Thank you for your support, we knew eventually that time would come when we would no longer be able to care for her sufficiently.
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Unfortunately, most of the time, it’s when you look back that you might regret or change something. I would have absolutely insisted on occasional caregiver breaks with my parent.
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labguru2002 Mar 5, 2019
Thanks for your support. We try to get breaks once a month, but we have to pay for a sitter and it's only for a couple of  hours. I guess any break is as good as nothing.
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You know I’d try not to feel guilty about moving her into a care facility. After all today is not like 100 years so when most families were farm families taking care of home and loved ones all in one place. It’s so different now with both people having jobs and children moving away to pursue education. And people are living longer! Do you really want to do this for another 5-10 years when you know the end result will be the same?

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.
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Reply to Granddaughter12
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Do connect with the local Area Agency on Aging to see if they have a Caregiver Support Program which could provide some funding to get someone to watch her so you can get a break(s).  IF she continues to stay with you, you at least need to establish some boundaries/space and maybe have a hired caregiver so that she is not your concern 24/7
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My heart goes out to you labguru.  I've been caring for my Mother for 4 years now, and although I've learned a great deal about her care, there are days when the stress gets to be too much and everything I've learned just goes out the door (I lose it).  First of all, patience is key.  You're not dealing with a rational person - her mind is dying.  Patience, compassion, reassuring, and basically treating her like you would a 4 year-old, makes all the difference.  If I raise my voice or pressure my Mother to do something, she becomes combative.  When this happens, nothing gets accomplished.  Another positive is routine.  This may sound like an oxymoron since memory is impaired, but I've found that doing things such as going to the bathroom, getting ready for bed, eating dinner, etc., at the same time each day, really helps.  They need a lot of love and comforting and honestly, if it gets to be too much, you are wise to find a place where she will receive the specialized care she needs.  When you reach the burnout stage, it's time to sit down and talk, consider your options and make decisions.  Burnout is an unhealthy state of mind.  This is the voice of experience talking.  Best of luck to you.  You're among friends here and you'll find a lot of good advice.  Hugs and prayers. 💙
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