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I am 15 years into the caregiving journey. First for my father, who was a quadriplegic by the end and now for my mother who has Alzheimer's and is in memory care. She has now taken another turn for the worst and most likely needs a wheelchair. One of the few positives up until now has been that she was mobile. Mentally, I am really struggling with the thought of another loss of any kind. I am losing the one positive thing that I usually think, "Well, at least she can still walk." I am so done with caregiving and Alzheimer's but I am going to have to suck it up and find the strength to keep going. I guess I would like to know what has worked for other people when you reached the point that you are so done with this situation, but the cold hard reality is that this situation is not done with you?

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Sophia, nobody has been 'done' with the whole eldercare routine more than me, after 10+ years of it with 2 parents I moved out here from Florida after dad had to stop driving. Not as bad as you, though, with 15 years in, so I feel for you. My mother is 95 and in Memory Care for just under 3 years now with advanced dementia and wheelchair bound as well. She went into a w/c in 2019 after having pneumonia and going to rehab for 3 weeks to recuperate. She had neuropathy for years, fell 40x in AL, and it was LONG OVERDUE that she go into a wheelchair b/c we were hoping to cut down on her falls.

The wheelchair wasn't a huge deterrent for her, really. She managed to get around with it just fine. Lots of the other residents in her MC were also wheelchair bound, so she wasn't the odd man out, either. Your mom will be FINE and she'll likely adjust to the wheelchair and learn to maneuver it all around the MC like a pro.

As far as your state of mind goes, what do YOU need to do to care for YOURSELF now? Mom's okay in MC; her needs are being met there and you're not responsible for her day-to-day care, nor are you responsible for her happiness or for how she adjusts to the wheelchair situation. In reality, this isn't YOUR loss, that she's going into a w/c, it's HER loss. SHE is the one who will have to acclimate to the change and seek the support of the staff at the MC and perhaps physical therapy (like my mother did) to help her learn the ropes of the new chair. You can arrange for PT and OT to come see her, but then it's up to HER to do the exercises, etc.

Decide how often you want to go visit mom and call her. What will it take for YOU to find peace within and to also advocate for her care in the MC? It shouldn't be taking up ALL your time or all your mental headspace to do this! If it is, something is wrong and you need to examine what. The whole purpose of managed care is to release YOU from the 24/7 aspect of caregiving. If you're internalizing too many of mom's issues, you have to find a way to let it go and find something that brings joy to YOUR life! Alzheimer's has robbed all of us of ENOUGH already! I know what that feels like, trust me.

I really did feel like my mother was going to live to be 100 b/c she was plugging along just fine, in spite of her advanced dementia and chronic agitation. Then last Tuesday, out of nowhere, she went to bed b/c she couldn't sit up anymore in her wheelchair; her core strength was gone and she was tired. She is now in the active dying stage and not likely to live another few days. The truth is, only God knows when our mothers will transition and leave this Earth. That's not to say "Oh just suck it up and deal with it, she'll be gone soon enough"........not at ALL. It's just to say that things can change on a DIME, when you least expect it. I feel relieved that mom is approaching the end of her life now b/c dementia/Alz is a HORRIBLE thing to be afflicted with, and the pain it causes ALL of us is beyond words.

I wish the very best for you and for your dear mother. I hope that YOU can find a way to honor yourself throughout this dreadful process and to find some joy to inject in your life b/c you deserve it. Sending you a big hug and prayer for peace, too.
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499HopeFloats Feb 2022
All of my good thoughts and prayers are coming to you. You have had so many years, this has to be surreal. At least, that is how it felt with my in-laws. Take care.
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You are anticipating another death, but that's what happens in life. When you said "can't handle it . . ." I thought you were going to describe being overwhelmed by 24/7 hands on physical care taking, but you are not doing that. When people say they are "care taking," I assume they are actually doing the care taking. You are not. Your mother is in a facility where other people are doing that hour-by-hour care taking. Your distress is very real. Every loss is traumatic. "Anticipatory Grief" can be debilitating. Grief or caregiving support groups can be a very supportive place to tell your story and share your emotions. If there are no in-person support groups in your area, or if you prefer not to be in groups of people right now, there are helpful Support Groyps that meet by Zoom. The Alzheimer's Association has resources for care taking and grief situations that are helpful even when Dementia is not involved.
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AngieGuido74 Feb 2022
i didn't see where mother was in home - maybe i missed it - yes anticipating grief is horrible! if you are that kind of personality it is hard to stop.
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I work as a registered nurse. Every day I have a few clients that struggle with mobility issues, cognitive issues, medical issues - all at the same time. Some are pleasant and I actually enjoy talking with them as I care for them. Others are difficult and I try to show compassion and be patient. Since COVID, hospitals are short-staffed, the workload is heavy, and I am staying longer than my 12 hour shifts. It is not likely to change in the near future.

What do I do? I build self-care, loving connections, and meaning into my "non-nursing" hours and days. I know that the work is not going to change - like your situation with your mom - but I have choices of what I do with my time and how I react to the difficult situations that come my way. Since I belong to Jesus Christ, I find that He gives me strength and peace of mind when I need it.
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We are not Gods. We are human beings. We have limitations. I never could have done what you have done for a second. But now you are up against your limitations and I think you need to honor that, own that, and find a way (even if it entails professional help) to move on with your own life, to safely place your Mom. You will need to accept that she will be unhappy with your decision and that you yourself will mourn it, but there comes a time when mourn or not, you are into a survivor mode. People speak of guilt. It's the wrong G-word. The correct word is GRIEF. You grieve that you are NOT a god, you are NOT omnipotent, don't have a fairy's magic wand, cannot change anything, cannot control anything, and cannot survive much longer.
What happens if you do not survive this? What then for your Mom? Well, I will tell you. She will be where every other person who ages without friends, family or children. She will be in the care of others.
Please accept the reality of your life. Shed the tears. Mourn the day has come you can't go on. If you need help to comb some of this out, then seek it and know that often a licensed Social Worker who is trained in counseling on life transitions is much better in these cases than a pyschologist, because you don't need FIXING, you simple need understanding, a way into acceptance. That old prayer about changing what we can, accepting what we cannot change and wisdom to know the difference is entirely right on.
I sure am sorry and I certainly wish you the best.
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Sophiahd Feb 2022
Hi AlvaDeer, thanks for your response. Just to be clear, she is in memory care. I did put that in my original post. I visit her once every two weeks now but I do all the doctors' spots, POA, etc. I am speaking more psychologically than doing the day to day care. I am just not prepared right now mentally to see more loss, but I am not doing the hands on care anymore.
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Frankly, the day my mom went into a wheelchair full time was great. She'd just fallen and had 28 stitches put in her forehead, so the days of falls were over. Because she was in memory care, the caregivers were able to move her from her room to the common room to the dining areas much more easily. She was still able to stand up in order to go to the bathroom, but she always had assistance and again, that prevented any further falls.*

Try not to see your mom’s need for a wheelchair as a loss, but as a way to keep her safe.

*This does not apply to Lealonnie's mom who falls out of her wheelchair constantly, but I think she's more the exception than the rule.
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lealonnie1 Feb 2022
Yeah, huh? BUT, once hospice brought her a high-back wheelchair that tipped back a bit, she didn't fall out of it ONCE!!!! True story!
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I suggest you see a cognitive therapist for your own mental health.
I have cared for my husband post stroke for 22 years. Each stage of that journey has been grieving a loss. The last several months has required other caregivers, morning and night, because at 85 I can no longer do the physical lifting.
Although I am a trained therapist, I find it necessary to see someone else, periodically, to put things in perspective. (It is a very safe place to cry).
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It's up to the caregiver - when 'enough is enough' - not the patient.
Why do you think your MIL's life is more important than yours?
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If your mother is in memory care, what caregiving are you still responsible for? Care is paid for so you should be visiting, maybe doing her nails or fixing her hair, or washing clothes? You sound like you're experiencing burnout. Remember to take care of yourself. Maybe see a counselor so that you can better deal with what's happening.
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Might I ask, how old you are? 15 years with the caregiving? Do you have addt'l aides come in so you have a break? Do you have a sig other, children...career? Was it always the game plan? Did you know since you were a child that this would be part of your responsibility? You were created to have more in your life......"I am so done with caregiving and Alzheimer's but I am going to have to suck it up and find the strength to keep going."
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15 years? You poor thing. That's a heck of a long time. The thing it, with ALZ, it is constantly changing and always getting worse. New milestones, like this need of a wheelchair, are very common. Somehow, you will help yourself if you can find a way to accept the continued, inevitable decline. You will find the strength to deal with this. You might need to dig deep, but I'm sure it's there. Do some self care to help yourself personally feel good. Get a mani/pedi. Go for a long walk. Visit a close friend.

Believe, me I am not saying any of this is easy! I had a realllly hard day with my mom yesterday, starting with poop on her bathrobe which nearly put me into orbit. She had such a confused day and it was HARD. Thankfully today she is back to her normal level of confused. So, not always easy but we can get through it.
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