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Our mother started showing signs of dementia around 75. She's now 83. She refused any early help and would consistently tell us that her memory loss "was a normal part of the aging process". A car accident in December 2019 changed her life, as she knew it, and she entered a memory care unit in 2020. Every time we saw her she asked to go home, so, in February this year, after a horrendous year of hardly being able to see her because of the virus, my brother removed her from the facility (she wasn't receiving proper care) and moved her home. This is a place where she had lived for 53 years. I have a video of her, sitting in her living room, begging me to take her home. :(.... The 3 weeks she was home, family was caring for her with the exception of a night nurse. It became blatantly apparent that we were severely unqualified to provide the care someone with Stage 6 Alzheimers would need. Additionally, the house wasn't suited for her medical needs. It was staggering. We were fortunate to be able to find a better facility for her and she moved there the end of February. Even though my mind knows she has to be in this facility, and she receives kind care, my heart is broken and I can't seem to balance any of it. Does anyone else struggle with this?

I don't think your 'heart is broken' b/c your mother lives in Memory Care, but b/c your mother is riddled with Alzheimer's which is the true cause of your upset & distress. AD and dementia rob a person AND their family of everything good & replace it with a shell of the person we once knew & loved. It's a lose-lose situation for all concerned.

My mother is 94.5 with moderately advanced dementia & living in a Memory Care ALF herself since June of 2019. She's miserable 90% of the time, wanting to 'go home' and not even knowing 'what' or 'where' home is, since the last time she had a home with my dad was in early 2011. I'm certainly not equipped to care for her in my home, and even if I was, she'd still be miserable here and wanting 'to go home.' Dementia creates mass confusion, chaos & anxiety most of the time, yet we're trying to 'balance' something that can't BE balanced! We're trying to fix something that's unfixable; a disease that will only worsen and end our mother's lives eventually, while we sit back helpless to do anything about it. That's the stark reality we're faced with. Plus the fact that the confusion morphs all the time, so we never know WHAT we'll be dealing with on any given day. Nice mom or angry mom or agitated mom, right? Every day and every hour is different, so THAT is the element of the disease that KEEPS us off balance ALL the time.

Our main goal in this madness is to keep our mothers safe & well cared for by teams of caregivers devoted to that very thing. That's all. We go to visit and bring them what they need or want, make sure we keep the MCs feet to the fire in doing for our mother's what NEEDS to be done, and bring them our love and affection when we go. That's about all we can do.

Every day I pray to God He will take her Home and end this chaos and misery for all of us, but primarily for her. My mother's money will run out soon to private pay for her stay in Memory Care & then I'll have to apply for Medicaid for her continued care in a SNF with a roommate. To continue her 'life' in this wretched state. This is my biggest struggle of all: to reconcile why we have to watch our loved ones live a life like THIS, sometimes to 100 years old, because our primary medical goal is to 'extend life' under ALL conditions, as long as possible.

Wishing you the best of luck accepting all that is and coming to terms with the difficulty it presents.
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SoLost21 Jul 27, 2021
I could've written every thing you said here. It helps me to know that I'm not the only one praying to God to take her home and to not let her suffer any more. Extending life is good, when there is the ability to actually "live". She isn't living. THIS thing, isn't living. You are correct, it is misery for all of us, especially her. We are in the same position. In a short time, all of the money she saved for the past 30 years will be gone and we will have to apply for Medicaid. Your struggle is mine as well, because it's torturous. I never thought there would be a time in my life, when going to visit my mother would give me anxiety. But it does, nearly every time, unless my husband is with me. He is her favorite. He is a natural caregiver, so he deals with her shift in moods better than I do. Thankfully, all of her children and children in law, agree on the course of care for her. We are all involved with the facility, so that they know, we're paying attention and need them to do the same. I suppose I will continue to walk with you in this Unbalanced state, until something changes. Thank you for all you shared with me. It's so helpful for my spirit. I wish you luck, peace and courage, as well as we travel this awful journey.
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So sorry…the only way I could successfully deal with my moms dementia was to get counseling by a professional. No one gets how painful this is until you are in it. I was a clinical professional in a nursing home for 27 years…I spoke to family daily in dementia units and at care meetings.. I thought I got it. Nope..not until it is your parent do you fully understand. I had terrible Anticipatory Grief…about 12 sessions and I felt so much better. Now I enjoy what good is left. I set a schedule to visit mom and I have allowed my mom to cope alone a few days a week. She finally developed relationships with staff and others. It was hard for me to do..But it worked.
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I think that you know deep down in your heart that you won’t be able to find a balance in your life. It’s a nice thought, but impossible.

You are grieving for the mom that you once had. Even though your mom is still here physically, mentally she isn’t. Her spirit is gone. Everything that made her ‘your mom’ is gone forever. Therefore, their will never be a ‘normal’ balance in her life or yours. The scale is tipping heavily and it hurts terribly.

It’s excruciating to watch a parent suffer and decline. We pray until we apologize to God for sounding like a broken record, right?

I am sorry to say that the only time we get some sort of relief is when their life is over. Oh, we still grieve, but in a different way. Honestly, I think watching our mom fade away is the absolute worst part of the grieving process. I just lost my mom in April.

We come to terms with the finality of death. We feel peace that our mom is finally at rest, but we dearly miss the mother who did so much for us throughout our lives. After watching my mom live to be 95, with a horrible quality of life for the last several years, I now pray that I never go through what she did. It really does make us think about our own future in our elderly years.
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SoLost,

I get you. We had to put my mother in MC about 6 months ago.

First of all, there will be people who come along and give you the “all facilities are hellholes” speech. Anyone who has not cared for a dementia patient does not have any idea what that reality is like.

The whole thing is awful. A long grief that just keeps on giving.

My mother has moderately severe dementia. She is terrified, angry, upset, and full of anxiety. Psych meds have been changed multiple times, to no avail.

Visits are torture for us both. She knows that she has SOMETHING wrong, and seeing me reminds her of that.

Know that there are those of us who know exactly what you are going through.

Come back here and soak in the comradeship in this club. None of us applied for membership, but you are welcome to join in the festivities! 🤪
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SoLost21 Jul 27, 2021
I totally wish I'd found this forum sooner. You described my mother in your reply. I genuinely appreciate each and every one of you who took the time to share your thoughts after my post. We were really shocked that the initial facility she was in, ended up being so awful. But, I basically knew, when they were able to lock us out, that the care level would suffer, and, it did, in a big way. As with you, when my mother sees me, she connects me to home, because I'm her oldest and she remembers all of the details from 50 years ago. She immediately starts crying. I can understand. This isn't the way any of us expected her elder years to be. I hope the facility your mother is in, is a good one and there are kind and compassionate caregivers there. I don't think I like this Club at all and if I could kick myself out of it, I would. (lol) But, here we all are. I'll be back to soak with the rest of you. :) Thank you for your kind and humorous reply!
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Anyone who has a parent suffering from a Dementia eventually has to make the decision to place that person. Our parents are living longer, into their 90s and some 100 or more. Problem is, they can no longer care for themselves. And their children are now Seniors with their own health problems. You have to be a saint to care for someone 24/7. A lot of us don't have support of family.

When your Mom said she wanted to go home, she may have meant her childhood home. IMO people suffering from Dementia go backwards in time. My daughter was an adult when my Dad gave her a hard time about something she was trying to do for him. She said "Pop Pop its R" he said "no ur not R is a little girl".

I cared for my Mom in my home almost 2 years. Not as long as some of our members who have been doing it for years. And I don't know how they do it. I found out caregiving was not my thing and my house was not conducive to Moms needs. I placed her in an AL and she was happier I think. In my house she was pretty much in one room all day. Oh she saw us milling around. But the room had a bathroom, easy access out of the house, (child protected knobs)and safe. The AL was a square shaped building with one hall way going around inside always coming back to the common area. It had couches and chairs where Mom would sit and the continue her little walk. There were people, activities and entertainment. I made a better visitor. Got to know the staff and some of the other residents. I could enjoy my Mom which is hard when you are doing everything for them.

Guilt is self imposed. Enjoy what time you have with Mom.
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SoLost21 Jul 26, 2021
I agree, guilt is most certainly self imposed and I'm really good at it. :(
We all agreed that mother coming home was to show us that no matter how much we wanted that for her, there was no long term way to make it all work. I was at peace with it then, but I've placed myself right back where I was initially, which is, she's trapped in a building, her free will is gone and she has no way to change any of it. It all seems wrong to me, but there are no other options. Caregiving is also not my thing. I could do it for a short time. Thank you for your kind reply.
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I don't know if there's any such thing as balancing your life while caring for someone with dementia. I think the best you can do is “survive”. They talk about being a cancer survivor, and in no way am I diminishing the challenges that represents, but surviving the dementia caregiving experience doesn't end with a diagnosis of remission- not for the caregiver, and, sadly, not for the LO. So how do you survive? I don't know. Maybe it's persistence, resilience, repayment for the love she shared with you, until you realize you can't anymore.

You know your mom's destiny. You know the family didn't have the skills to care for her at home. You realize she is being given the care that her late stage dementia requires. Certainly your heart is broken, there's no denying that. It's a situation you no longer can control, but it's one you have to accept.

I'm impressed with your responses to the other posts. And, yes, it is like witnessing 2 deaths. The grief is unavoidable, and the guilt is self inflicted, even after the sacrifices of caregiving. But a feeling of gratitude can help ameliorate the other two Gs. After all is said and done, it's gratitude the will remain.
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SoLost21 Jul 27, 2021
It is possible I should stop seeking balance. Survival is a very accurate description. I'm not sure I will ever be able to accept or understand this outcome, even thought there's nothing I can do to change it. I've often said to the people I talk to about this, that I'd rather she would've had something like cancer or some other illness I could've helped her through and recover from. I can't help her through this and there will be no recovery. She will continue to suffer daily from the hideousness of this awful thing. She will sit in her room and wonder why she's there, why we put her there, why she has no ability to make decisions for her life. I am grateful that we have this wonderful facility here, close to us. The 1st one wasn't so wonderful. I'm grateful we're actually able to see her now, after a year of being kept away. I'm thankful for all of the years I've had with her and I'm so truly sorry this is how she has to spend the last years of her life. She was a good person her whole life. She loved her home and her family and never had any health issues.........not 1. Until this. I'm sorry for all of us who walk this path. Thank you for sharing your thoughts, each person helps in a different way.
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It’s hard to watch a parent fade away. In a sense you are mourning your mother. Her body is still here but the mother you knew is not. It’s like a death before the true death. It’s okay to grieve the loss.
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SoLost21 Jul 26, 2021
I said that very thing to someone recently, that it's like 2 deaths; one while she's here and one when she's gone. Each as hard as the other.
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Your mother is blessed that you recognized her need for care and found a place that is kind. You’ve done well for her. Accepting this new reality is definitely the hard part. None of us wants to see someone we love in a facility, even when we know it’s what is needed. It’s facing the change that’s coming, the change none of us wants. Remind yourself daily that there are some things that can’t be fixed, and that you’ve done your best for mom. I wish you both peace
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SoLost21 Jul 28, 2021
I feel like the 3 of us and our spouses have, with each and every step, made sure it was the best thing for her. Each step was hard. In one of the recent visits I had with her, I told her...... All of your children will always do the very best we can for you. She said .....I know that, you don't have to tell me, I know. In her fleeting lucid moments, I know she knows. I wish you peace and strength as well. It's gonna take everything we have.
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If your mother is receiving good care in her current facility, you should feel confident that you have made the right decision. You were wise to realize that her care was more than you could manage at home.
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Your heart isn't broken because you had to put your mom in a care facility. It's broken because she isn't the mother you knew and loved your whole life anymore. She's a person living with Alzheimer's/dementia and that disease has turned her into a different person.
There's no way to balance this. You're grieving for the loving mom you lost. Even though she's still living, that person is gone. Everyone's grief is different. I don't want to come off as cliche here, but that saying about time healing things is true. In time you will accept the person your mother is now. You will come to recognize when she's having a good day and will appreciate it. And you did the right thing putting her in a facility where she can be properly cared for.
In the meantime, maybe it would help if you went to therapy and discussed the feelings you have with a professional. They can help you process all of it.
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