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?
This year HAS been a nightmare beyond description, but your mother’s pleading to go home was not necessarily related to where she was. The desire to “go home” afflicts many, if not most victims of dementia.
It is often much harder on the caregiver to deal with it than on the patient, because “home” is no longer a place, but the unreachable thought in your mother’s progressively damaged mind.
When you as loving caregivers have placed your mother in the best place you can find, and have chosen residential care as the best choice among any of the “less than home” alternatives that are available to you, you have done all you can.
Caregiving often involves adjusting to the fact that your LO has changed from your parent to someone very dear who now depends on your choices, instead of making their own.
Be at peace with what you’ve done.
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.
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.
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! 🤪
Duty of Care vs Freedom of Choice.
But when you are dealing with lack of insight that dementia brings.. freedom of choice may increase real risk of harm.
Would living back in her home alone cause her harm?
Would living in her home with 24/7 supervision be; Affordable? Achievable? Enjoyable? Offer Mother any better quality of life? Be less burdensome for you to arrange & maintain?
The other big questions are;
Can you fix her dementia? Or fix old age?
Big (((hugs))) for you. It's ok to be deeply sad about it.
Yes, Living back home would've and did cause her harm.
Living in her home was not affordable, enjoyable, nor did it offer her a better quality of life. In fact, the cost was staggering. At least $10,000 a month for skilled caregivers (not family). Then there's the whole limitless amount of situations that can come up with caregivers, because they're people and have lives too. It was mind boggling.
We all knew when we moved her to the 2nd facility that it was the best thing for her, but it doesn't unbreak my heart. :(.....
Thank you for the hugs and for the reality.....I need them both.
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.
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.
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.
Balance is tough if close to non-existent in these extreme cases and with dementia in general. It's one heck of a cruel disease. I think you're grieving for the mom you've already lost and that's at least part of why you're struggling. Now that she's settled again, I'd try to focus on her being safe and cared for. That may seem like a low bar but her quality life at stage 6 is going to be pretty low, I guess. It's amazing how long they can hang on when their minds are such a mess. So sorry that you are in the midst of this.
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.
Stage 1 - Denial: not believing or feeling the painful change is reality
Stage 2 - Anger: feeling or believing that the painful change isn't fair
Stage 3 - Bargaining: ineffective actions to try to make the painful change go back to the way things were in the past
Stage 4 - Depression: sad feelings when realize that the painful change is permanent
Stage 5 - Acceptance: learning to live with the change and it becomes less painful or not pain anymore.
Be ok with feelings - good bad and neutral - about this situation. Find ways to embrace the good about this situation and make peace with the unpleasant realities.
So glad your family realized that your mom needed 24/7 professional care.
So glad your family removed her from a place that gave inadequate care.
So glad your family placed mom into a facility that gives better care.
So glad you tried to give mom her desire to live at home - even if for a short period of time.
I decided to hire 24 7 Care for my 95 yr old Dad so he could continue to live in his own home. He just turned 97 in May.
I feel if you can afford it, your loved one is much better off at home.
If you must put loved one in a Nursing Home, I would want a Camera in the room so I could see what goes on any time 24 7.
I installed Nest Cameras at my Dad's house so I can check on my Dad 24 7 to make sure the Caregivers are treating him right.
She is where she probably needs to be.
You have made the right decision. Your intellect has told you that neither the house nor your caregiving capabilities could continue in her home.
To illustrate the point, let me tell you a bit about singer Glen Campbell, who had Alzheimer's. Five family members were rotating shifts to care for him full time, plus visiting nurses who came to the house. Even with all of this help and his plenty of money from his career, it became TOO MUCH for the family - especially as he became physically aggressive. So, they were forced to place him in a memory care facility.
It sounds glib to say it, but you have to put yourself outside a personal relationship. Look on the body of your LO as being a stranger for whom you would do your best but someone you have no relationship to.
If your LO does not recognise you, or if your presence causes agitation after you leave, accepting that the person you knew is dead to you and dealing with the person who remains as a stranger can be easier.
Of course this then brings one to the subject of grief - You cannot put a loved one behind you especially if they still physically live without grieving for what they were and what you have lost. Dementia is a vile disease that takes what we love and leaves a shell we don't know, but we don't allow our selves to grieve as the disease progresses because grief is linked to physical death in our minds. Allow yourself to grieve for the person you knew in the way you would if she were non longer with us, allow yourself to do everything you would had she died, and look after the person remaining as someone different.
I'm sorry - I have put this very very badly. You have every reason to grieve for your loss now, but I do accept not everyone can segment their thoughts and actions in a way that enables them to move forward and see their LO as a different person from the one they loved.
Prayers for you, you are not alone. 🙏🏽
I am still quite fragile, but with time I am becoming more accepting. Over the past 5 years, with the progression of this disease, I have endured many stages of grief, but this the hardest. I have found what helps me the most now is to really focus on every moment I can be with him. Focus on the small things as extra big gifts to both of us that will be ever lasting in our hearts. Even if it is just a touch or holding his hand. As I lay my head on his chest so he doesn’t see my tears. Feel the love and it will always be with you, even when not together❤️
My heart goes out to you. Yes me and my siblings went through the same heart ache. Our Mom made us promise we would never put her in a facility. When we could no longer care for her we made the same decision and found the safest and most loving facility we could find. Mom developed friendships with other residents and seemed cheerful and content. However every time we visited she begged us to take her with us. It got so painful that the kind nurses would distract Mom when it was time for us to leave and we would slip out. Mom never knew the difference. We would prep back in the window to see if she looked upset that we had gone. She never did. The point is their memory gets shorter and shorter. We are the ones that feel the pain. Enjoy every smile and laugh you can still get from your Mom. Don’t feel guilty to find ways to avoid the sad goodbyes. Just make sure the caregivers are keeping eyes on her at all times, keeping her clean, making sure she has her dignity, are kind and keep her safe and healthy. Follow your heart, you can tell if your Mon is being loved and cared for when you visit. If you ever get a bad feeling speak up.
In closing, you are not alone. Your feelings are normal. Your Mom’s behavior sounds normal too. I wish you much love and peace. I will keep you in my prayers.
You have the focus to work on you and moving through the grief.........
Dealing with her being older and
that you were unqualified to care for her serious illness and feel guilty about it ( Would you fault a daughter who was unqualified to operate on her mother's brain tumor?- no- This is why we have care centers- to let people who spent their life training and have the skills to do it well )
Seek a pastor or counselor to help work through this.