I hate this disease, dementia. Hate it, hate it, hate it. Mom called me this morning and we spoke briefly on Facetime. She asked, once again, when my brother and I would deliver the lounge bed she ordered. I have no idea what she is talking about. I try to console myself with the knowledge that she is safe where she is, in assisted living, and fairly comfortable. But I find myself grieving just about every day.
When mom asks where her lounge bed is just tell her that it's on backorder and you will let her know when it comes in. Eventually she'll be on to something else.
You must learn little "fiblets" to keep her and you calm.
I'm glad to hear that at least your mom is in assisted living so that the brunt of her care is not on you. That is a blessing for sure.
You're going to be ok, as this too shall pass.
She is safe that is the important thing.
funkygrandma59 is right on with the "fiblets"
Back order
Can't be delivered until next week
They ordered the wrong color
And here is an idea...
If she is wanting to replace a couch or chair in her room get a cover for it. When she is at lunch or at an activity cover what she has with the new cover and she may think that she has a new piece of furniture.
Rejoice in the fact that she can still call you and talk to you. My Husband was nonverbal the last 7 or so years of his life so if he said even 1 word I would have been happy.
If you are her PoA and, if you haven't already done this, read it to see what is required to activate the authority. Usually it's 1 official medical diagnosis of cognitive/memory impairment. Make sure you get this done so you don't have to do it in a crisis.
A certified elder law attorney will determine, during an appointment with her, whether she has legal capacity or not. The bar is low so don't presume she doesn't meet it.
Everything about dementia is hard. I wish you peace in your heart on this journey.
Every thing I do with her now, I'm thinking this may be are last time.
It's hard and it stinks, but it's life.
By accepting, this is what happens, we are not alone, let myself be sad when I am, but also how to put it out of my mind and enjoy my life.
Because all of are life's are short, every day we have is one less day. And I try not to ruin that day I have , by worrying about something that I have no power over.
Then I looked at your answers below, and found them so beautiful.
Wheat, take care.
I’ve found the phrase, “ Everything is pre-arranged” to be very very helpful. “ No worries, the payment for lunch is pre-arranged”, “ The schedule for the family roller skating party is pre-arranged”, “ The lounge bed logistics are pre-arranged, it’s just a slow process…” etc…that kind of thing. May have to repeat the phrase but it often works for me.
Best to you…
My mother died at 95 from advanced dementia and CHF after 6 years of a progressive downhill slide with the dementia. I cried every time i saw her for a visit in Memory Care Assisted Living. I didnt try to stop the tears either, I just let them flow. Same with my father who was devastated by the brain tumor which rendered him immobile at the end. It tugged at my heart to watch them fall apart, knowing there was nothing I could do to fix the situation this time. Only God could intervene and end their suffering at that point.
I'm sorry for your pain. It's the price of love, Wheat. May you find peace along the way for yourself.
Now that my Dad is gone, as hard as it was, I’d do anything to have him back.
Back in early 2020 it would hit me. I would almost be sick to my stomach with grief over my Mother, and here she is still chugging along at 97.
Anyway, what you're feeling is a normal part of watching your Mother go through that slow decline called dementia.
I wish you peace.
Writer Heidi Priebe on love and grief:
"As long as there is love, there will be grief. The grief of time passing, of life moving on half-finished, of empty spaces that were once bursting with the laughter and energy of people we loved.
As long as there is love there will be grief because grief is love's natural continuation. It shows up in the aisles of stores we once frequented, in the half-finished bottle of wine we pour out, in the whiff of cologne we get two years after they've been gone.
Grief is a giant neon sign, protruding through everything, pointing everywhere, broadcasting loudly, "Love was here." In the finer print, quietly, "Love still is."
https://jamesclear.com/3-2-1/September-19-2024
It is all the love you want to give and cannot.
All that unspent love gathers up in the corners of your eyes, the lump in you throat and in that hollow part of your chest.
Grief is just love with no place to go”
Unknown.
Because we lose our loved ones with dementia, piece by piece, their death seems drawn out over years, even decades. By the time they die, we have been anticipating their final leaving for so long that it's difficult to grieve properly. At least that's how I'm feeling right now, as I prepare for Mum's funeral this coming week.
I've just been picking out photographs to share at the wake. I wish I'd done this before, to keep Mum, when she was herself, in mind.
So, that's my advice. Create a memory book. Not for your mum, but for you. It will be tough, emotionally, but it will help you remember your mum as she was and to tell yourself that this version of your mum is ill. It's her damaged brain that is asking about a sofa, that makes your mum fixate on things, prevents her thinking about others and being respectful of their time and energy.
I stopped creating a memory book for Mum when I realised that memories could be painful for her, especially when she realised that she was forgetting. But I wish I'd carried on creating it for me.
I wouldn't sacrifice my own life for my mum's, and I realised that we cannot make our loved ones happy, but she was safe and had what she needed, if not always what she wanted.
I reminded myself that I was always making decisions in Mum's best interests, but that I was not superhuman. My best had to be good enough.
You are grieving in slow motion. Part of her is here and part of her isn't.
This is heartbreaking. And, my heart goes out to you going through this.
I'd say that the is no such thing as "should" - although I believe you mean to say 'how do I do this? go through this awful pain? heartache?
As is said 'the only way out is through.' Meaning you intentionally feel as deeply as you can; do not try to avoid how you feel, get it out anyway you can. Scream, cry, go for walks, talk to a friend/church support.
Allow yourself to be as you need to be.
There is no 'right' way to grieve and especially when your mom is still here physically.
As you indicate you are burned-out, get help as you can to support you to either do some of the work / needs you take on or do whatever you need to support you.
Figure out what you are doing that you might be able to scale down or change, i.e., if you visit your mom 5 days a week, find volunteers to visit her 2 days a week - giving you time to go for a walk, to a movie, a museum - even take a hot bath or get a massage. Take some time for you.
Expect to grief and expect to not know how that process will unfold.
We never know. The process is different for everyone.
Do not judge yourself or your thoughts or behavior if somewhat erratic.
When my mom died:
- I put a pot of broccoli / vegetables in the cabinet instead of the refrigerator - and found is 2-3 weeks later.
- I missed a turn on to the freeway THREE times.
- God knows what else I did.
Get into therapy / grief counseling. If you do not know how to find a therapist or grief counselor, ask local dementia organization for referrals or the social worker where your mom resides.
- Get professional support.
- Friends are helpful although many people are very uncomfortable talking about death / dying / or even dementia, esp if they haven't personally experienced it (with their own family / friend) and find it hard to relate to you. The 'best' friend is one who gives you all the room you need to talk, be quiet - LISTENING --- and just be there with you - not offering advice or suggestions (unless you ask). Most people want to give advice (well meaning). A trained therapist will give you the space to feel and express however you feel.
Grieving is a slow process.
It can't be rushed. It has a psyche mind / energy of its own. It can feel very bizarre from my experience. I was totally thrown off balance emotionally, mentally, and psychologically. I couldn't 'will' or 'push' myself to feel differently. I had to be with how I felt, without trying to numb it out or be in a better mental place than I was. I wanted it to BE OVER ...
This is a good place to come to talk and let us know how you are doing.
Many of us have been in your shoes and can empathize.
We will listen.
You have friends here who understand.
Gena / Touch Matters