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.
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.
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.
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.
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
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.
Now that my Dad is gone, as hard as it was, I’d do anything to have him back.
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.
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…
Then I looked at your answers below, and found them so beautiful.
Wheat, take care.
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.
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.
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.
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.