Dementia is the long goodbye. Not only do we get to witness our loved one aging with mobility issues and illnesses, but we get to witness them losing their minds in the process. Turning into anxiety ridden and scared little children, begging for their parents and to "go home" to a time and place that no longer exists. And that heartbreaking decline goes on for years, in my mom's case, 6. I grieved every time I saw her, every time I spoke to her, every time she introduced me as her mother. I didn't let her see my grief, but I cried afterward in the car and or when I got home. I spent 6 years, the long goodbye, grieving the loss of my mother, actually, praying for God to take her and end the misery once and for all. She died at 95 and 1 month.
Therapy would have been wasted on me bc grief is something we must all pass through naturally. I did more crying while mom was alive than after she passed and achieved peace.
I'm sorry you're witnessing this sorrow yourself. May you give yourself grace as you process this grief and arrive at acceptance. Unfortunately, I have no idea how on earth a daughter or son could treat the situation as a job, with minimal emotional involvement.
In regards to minimal emotional involvement, I think maybe the length of time might be a factor? I grieved deeply for my son most of the first decade after losing the real him. The second decade I was living with the grief and wasn't emotionally torn up all the time. A benefit is that he seems to enjoy the happy, easy- going caretaker/job mom. I still have to lean into the grief when it pops up.
I am so sorry for what you are going through. I understand where you are coming from; and I have had 28 years of therapy, but with this similar situation to yours, it does not help. ( I do go to online Alanon meetings though, to remind me of what I cannot change). I have slowly, over years of suffering useless sadness, realized that I can't be immersed in grief anymore, I need to enjoy life while I can, as grief was killing my joy in life incrementally--and affecting those around me. I was trying to make my mother happy and give meaning to her life --and I am realizing that is impossible to do this for another person who is in no condition to respond or receive. My efforts consume me with no positive end result. (Her condition is mostly depression that expresses itself as anger at me, with also short-term memory loss). Now, I treat her as kindly as I can and tell her I appreciate her strength and that what she is going through is incredibly hard and scary, and I wish I could help her-- but I cannot other than to make sure she is safe and cared for. Then I get out of there. I make sure she gets the best care possible. But I can no longer be immersed in grief and sadness as it accomplishes nothing good for me or those around me. I hope this doesn't sound harsh. And I wouldn't say this applies to all types of grief. But grief over a parent who has led a long life, and whose care is overwhelming--it is the best way I can approach it, to accept, and to not get too involved in caring. I appreciate the memories but when dwelling on them is painful I put the pictures and memories away. Life is for the living, and people whom I can help. But it is very hard to come to this conclusion. And this is just me. All have their own journey. Just know you are not alone.
You grieve the loss as you have grieved for every other loss in your life, with pain, with tears, with honesty. Hopefully with the support of friends. This is certainly the most heartbreaking loss, to have someone standing in the shell of their body while their mind and all they were is already gone. It is a death before death. You are not alone. Husbands, wives, children, friends, sisters (that was my role) brothers, friends are losing those they loved to this living death every day.
There are grief workshops available. Most are free. There is little therapy can do about the reality of losses in life. The only way out of them is through them.
I can tell you that there will always be glimmers in them of who you once knew them to be. And they are still someone, but as Oliver Sacks, the neurologist said, their world is not our world. It is different. That doesn't mean it is not a world. My brother and I talked about his symptoms so long as we could. He mercifully died before the worst of his Lewy's could get all he had been. But whatever he would have become, he would have still to me been my bro. Would I have mourned his losses? Oh, my, yes. Am I glad he didn't have to endure them? Oh, my, yes. And glad also I didn't have to stand witness to them. He loved to be in charge of his life. It would have been so very tough.
It isn't like there is any choice in this, is there?
We deal a lot with grief in the mental illness world. The number one issue for parents is the deep grief they feel for the child they have lost forever. Their grief is unrecognized by society and no one (except other parents of mentally ill children) understands it when you try to explain.
Also, like your situation, the previous person is gone and the new person is problematic.
As MM suggested, treat it like normal grief - because it is. When you feel grief, lean into it and then step away from it and do something else. You have to learn to step away from the grief because wallowing in grief is tempting.
MM suggested you have minimal emotional involvement. That is for the best, I often interact with my son as though we are in a nursing home and I am his paid, respectful attendant.
I’ve often told people that I lost my mother twice, four years apart. When a stroke stripped away every ability, she was left with nothing and my beloved mother was gone in so many ways. She became unrecognizable. I visited her at least twice a week and put on my happy, positive face while inwardly hating every single visit. It was beyond sad. But the nursing home taught me that every human, no matter their condition, needed and deserved basic human kindness. I often viewed my mother as a person in need of kindness, someone to hold her hand, tell her a story, put lotion on her feet. She really wasn’t mom anymore and I had to make peace with that, to grieve it, and I won’t say it was easy, but it’s how I got through
Lili was moms roommate for a bit. Her daughter is one of my best friends. We would meet up with our moms with burgers and shakes. Then we’d dance to music. It was helpful to have someone else along for the ride. We’d make it fun. when lili left, things changed, but I’d still bring over snacks for everyone. We’d dance or play with a dimestore plastic ball. Emma who was in a wheelchair would want to touch the ball snd engage too. Sometimes i would just sit with mom and my aunt (moved her in same place)and read them a story out of woman’s magazine, or readers digest. Just a good short true story so they can listen and hear my voice. Change it up ftom time to time. I know it’s hard, but do not grieve around them, it just makes it tougher on you.. if you can’t muster up the energy to dance or make quick conversation, read them a story. Grab a readers digest or woman’s day. It’ll take about 5 minutes to read a story. They’ll hear you or sense you are there. Yes, it’s okay to grieve and be sad.. they’ve been gone for awhile.. I still grieve.. but as my FIL said, these bodies were not made to last forever..
@lealonnie1, yeah, I guess so, of course now that he has stage 4 colorectal cancer and his cancer is growing on each ct scan as he withers away, lucky me, I also get to experience all this suffering that will end in his death. Losing him will be a much, much deeper loss than losing my MIL after taking care of her through her vascular dementia. My own mom is currently in hospice and since she is 90, it doesn't compare. His suffering hurts more than anyone else's could, must be the mom/child "gift". He has dealt with 3.5 years of chemotherapy that has only made each day a misery and he has lost ground every single day in his battle.
Since my son suffers from severe psychosis, there are a lot of days when he doesn't enjoy me at all. Those days are particularly challenging for me and the caretaker attitude gets me through the days where he hates me and suspects I am poisoning him. On the "glimmer" days, he says he finds me reassuring.
All of these new treatments extend life, but it's a life that gets smaller and smaller.
As they say in the cancer world, if the cancer doesn't get you, the chemo will. He gets both the pain of chemo and the coming death to deal with each day.
Grief is grief and it's a burden to learn to carry, however it shows up.
I would get a $50 Massage on my way home from the hospital when My brother was near the end - it really Helped My stress Levels . Or Pick some flowers and focus on beauty . Little things Light a candle , Look at Old Photos , take a walk, sit in a church . Pray for them , go to the ocean, watch a sunset or sunrise . Talk to someone . Death is a difficult Pill to swallow . Have faith you will see them in your dreams healthy and whole and vibrant .
After a while I had a tough time generating the energy to visit the little old lady in my mother's body who otherwise bore no resemblance to her. She clearly didn't know I was her daughter, and as we'd always been close it was really hard to get my head around it. It became hard to care enough about her the way I thought I should.
In short, I forced myself to go, because there were still little glimpses of her that popped up once in a while that told me she was still in there. Her habit of twirling a lock of hair was one of the main things that never went away, and even though she was unconscious on her last day she was still twirling her hair. That kind of thing it was kept me going day in and day out.
My mom's been gone for 2 1/2 years now, and NOW I'm grieving her even though the mother I knew had been gone for the better part of 10 years. I think I felt I'd grieved her while she was still alive, but it turned out I hadn't.
There's no timeline for grief, and it'll hit you out of nowhere, or you'll wonder why it doesn't bother you on one day but does on another. It just shakes itself out with time.
Grief is experienced differently for all of us, depending upon the circumstances.
Indeed, we do grieve long before a person actually dies.
People are not the same person that they were before they had a disease that took their physical and emotional life away.
Plus, we grieve about not being able to experience joyful times together any longer. Those who didn’t have good relationships will grieve for what they would have liked to have in their relationship.
The way my therapist has explained the different stages of grief to me is that we may move through some stages more easily and become stuck in another stage. It’s a process that we work through.
There are grief support groups and caregiver support groups. I hope that you will be able to find peace throughout this pre grieving process and afterwards when death occurs.
The actual death is a whole other ballgame. For me, it’s a bit hard to explain. It’s sadness, yet relief. It’s memories, both happy and sad. It’s final but often doesn’t seem real. It takes time to fully grasp certain emotions.
Therapy would have been wasted on me bc grief is something we must all pass through naturally. I did more crying while mom was alive than after she passed and achieved peace.
I'm sorry you're witnessing this sorrow yourself. May you give yourself grace as you process this grief and arrive at acceptance. Unfortunately, I have no idea how on earth a daughter or son could treat the situation as a job, with minimal emotional involvement.
Now, I treat her as kindly as I can and tell her I appreciate her strength and that what she is going through is incredibly hard and scary, and I wish I could help her-- but I cannot other than to make sure she is safe and cared for. Then I get out of there. I make sure she gets the best care possible.
But I can no longer be immersed in grief and sadness as it accomplishes nothing good for me or those around me. I hope this doesn't sound harsh. And I wouldn't say this applies to all types of grief. But grief over a parent who has led a long life, and whose care is overwhelming--it is the best way I can approach it, to accept, and to not get too involved in caring. I appreciate the memories but when dwelling on them is painful I put the pictures and memories away. Life is for the living, and people whom I can help. But it is very hard to come to this conclusion. And this is just me. All have their own journey. Just know you are not alone.
There are grief workshops available. Most are free. There is little therapy can do about the reality of losses in life. The only way out of them is through them.
I can tell you that there will always be glimmers in them of who you once knew them to be. And they are still someone, but as Oliver Sacks, the neurologist said, their world is not our world. It is different. That doesn't mean it is not a world. My brother and I talked about his symptoms so long as we could. He mercifully died before the worst of his Lewy's could get all he had been. But whatever he would have become, he would have still to me been my bro. Would I have mourned his losses? Oh, my, yes. Am I glad he didn't have to endure them? Oh, my, yes. And glad also I didn't have to stand witness to them. He loved to be in charge of his life. It would have been so very tough.
It isn't like there is any choice in this, is there?
Also, like your situation, the previous person is gone and the new person is problematic.
As MM suggested, treat it like normal grief - because it is. When you feel grief, lean into it and then step away from it and do something else. You have to learn to step away from the grief because wallowing in grief is tempting.
MM suggested you have minimal emotional involvement. That is for the best, I often interact with my son as though we are in a nursing home and I am his paid, respectful attendant.
when lili left, things changed, but I’d still bring over snacks for everyone. We’d dance or play with a dimestore plastic ball. Emma who was in a wheelchair would want to touch the ball snd engage too.
Sometimes i would just sit with mom and my aunt (moved her in same place)and read them a story out of woman’s magazine, or readers digest. Just a good short true story so they can listen and hear my voice.
Change it up ftom time to time. I know it’s hard, but do not grieve around them, it just makes it tougher on you..
if you can’t muster up the energy to dance or make quick conversation, read them a story. Grab a readers digest or woman’s day. It’ll take about 5 minutes to read a story. They’ll hear you or sense you are there.
Yes, it’s okay to grieve and be sad.. they’ve been gone for awhile.. I still grieve.. but as my FIL said, these bodies were not made to last forever..
Since my son suffers from severe psychosis, there are a lot of days when he doesn't enjoy me at all. Those days are particularly challenging for me and the caretaker attitude gets me through the days where he hates me and suspects I am poisoning him. On the "glimmer" days, he says he finds me reassuring.
All of these new treatments extend life, but it's a life that gets smaller and smaller.
As they say in the cancer world, if the cancer doesn't get you, the chemo will. He gets both the pain of chemo and the coming death to deal with each day.
Grief is grief and it's a burden to learn to carry, however it shows up.
In short, I forced myself to go, because there were still little glimpses of her that popped up once in a while that told me she was still in there. Her habit of twirling a lock of hair was one of the main things that never went away, and even though she was unconscious on her last day she was still twirling her hair. That kind of thing it was kept me going day in and day out.
My mom's been gone for 2 1/2 years now, and NOW I'm grieving her even though the mother I knew had been gone for the better part of 10 years. I think I felt I'd grieved her while she was still alive, but it turned out I hadn't.
There's no timeline for grief, and it'll hit you out of nowhere, or you'll wonder why it doesn't bother you on one day but does on another. It just shakes itself out with time.
Indeed, we do grieve long before a person actually dies.
People are not the same person that they were before they had a disease that took their physical and emotional life away.
Plus, we grieve about not being able to experience joyful times together any longer. Those who didn’t have good relationships will grieve for what they would have liked to have in their relationship.
The way my therapist has explained the different stages of grief to me is that we may move through some stages more easily and become stuck in another stage. It’s a process that we work through.
There are grief support groups and caregiver support groups. I hope that you will be able to find peace throughout this pre grieving process and afterwards when death occurs.
The actual death is a whole other ballgame. For me, it’s a bit hard to explain. It’s sadness, yet relief. It’s memories, both happy and sad. It’s final but often doesn’t seem real. It takes time to fully grasp certain emotions.