Not because it's the worst thing in the world or because the person is unsafe or because you fear the person or because you are out of ideas for the cause. (Yes, the person might have a UTI or need oxygen and hospice has been called.) But because you feel sad when a person whose brain used to work well now asks things like, "Should I pull the cord for the staff to get the people on the Food Network out of my TV?"
She cries and wants to go home. And when I leave, Im just IDK, drained, sad, ...Im just always feeling for her NOT having a good quality of life but atleast I know shes well cared for.Blessed to have the caring couple who take care if her...I couldnt do it
It's grief. It feels strange to grieve the loss of someone who is still living. But the person we knew and loved is gone, or is changed to be unrecognizable.
My 64 yr old husband has been home for 10 years with dementia after a massive stroke which caused significant brain damage. The man who was once smart, funny, well-respected, hard working, and thoughtful of others is now like a demanding toddler; I need to feed him, change his diapers, and change the TV channel for him. He can't even use the remote. And he yells out and makes demands using the wrong words for what he wants, leaving us both frustrated.
I miss him so much! My sweet loving husband is gone, and this child-like being is in his place.
God bless.
He had Lewy Body, I know about the delusions, the hallucinations, inability to comprehend what I was saying and his frustration, which he took out on me or whoever was there. He was officially "sick" less than 2 years, but in looking back over our life, I realize now that he'd been ill much longer, there were odd things he did or said. Now I realize it was the beginning. I prayed for him to have peace at the end and thanks to his excellent care at the nursing facility and hospice, I feel he was peaceful at the end. To this day though I have a hard time crying, I wish I could. Maybe I'm afraid if I started, I'd not be able to stop. Love them no matter what, they are not in control. It frightens me to think of my husband's confusion and fear, I wish I could have helped him in some way. I was there with him every day and I hope he knew that I cared.
Last night she asked me about plans for the holidays. She keeps forgetting that my mother-in-law, with whom she was friendly, passed in August. I don’t like continually telling her that certain people have died, so I just pulled out a nice photo I have of the two of them chatting from an event last December and reminisced with her about that.
It is a release that we need.
For myself, during those times of sadness and fear for my brother I was so busy trying to keep things together and trying to function and protect that I literally could not cry AT ALL. In fact it would take something "other" to allow me to cry. A movie. A sick cat. Something like that.
I always think of tears as washing us clean. A release. I always try to tell people here that what they describe as GUILT is truly GRIEF. And it is grief so bad they choose not to face it. They would rather blame the person, the place, the thing, and EVEN THEMSELVES.
This is worth mourning. This is worth crying over. There are times that there is nothing in the world so hopeless and helpless in nature than THIS at the end of a life.
The worst part was LO feeling as if they are “ being imprisoned for no reason” . LO believing “ there is nothing wrong with me “ . LO believing that they were placed in a facility so we could take their money and home away from them . It’s torture for them and us.
A few times I resorted to placing some of the many cookie jars that my mother collected in a trash bag and taking the bag out to the garage and smashing it with a baseball bat . Very therapeutic.
These days they actually have “ Smash rooms “, where you can pay to smash things .
Now my sister is acting very much like my mother and believes I was the driving force in my nephew placing her . Sis thinks that I “ hate old people and just want to put all old people away for no reason “. However , Sis still remembers that I placed our mother and my father in law due to dementia . She was the first of my siblings to agree with me that my mother had to be placed . The 3 other siblings thought Mom could still be home alone or felt I should have left my own family and moved in with Mom .
My sister with dementia was the only sister I was having contact with . When she realized she was having dementia symptoms she asked me to support her son in placing her when necessary. But she has now progressed to the point where she thinks there is nothing wrong with her. Like my mother she is very embarassed and says she is “ not demented “. She is no longer herself . I have no sibling relationships left .
He was such a smart and kind man. He's very handsome, even at 97 people at the NH tell me that. Despite being diagnosed with colon cancer three years ago, his body still refuses to give up. I guess cancer does not progress quickly when you are 97.
Then came my MIL and her husband (memory impairment for her, Parkinsons for him). That started in 2014 for the both of them, ended in 2019 for him and 2024 for her.
In between all that were my 2 out of state Aunts. One's dementia was formally diagnosed in 1989 and ended in 2023, the other had no dementia but lived in her home being cared for daily by 2 of her nieces (who I managed) before she passed this Jan 2025. She was 105.
Now my own Mom lives next door to me at 96. She has mild/mod dementia but is still mostly herself, still mobile and now with a daily caregiver (because my husband and I still work PT in our own business).
I'm going through this laundry list because in all cases, I had to count their blessings for them to keep my own heart and mind healthy: they all lived long lives without much (or any) suffering or hardships. I have a Christian perspective on life and death, and remember that no one gets to stay here forever. Perspective helps a lot: back in 1980 my cousin's 7-yr old daughter was murdered by a neighbor. The shock and grief from that caused their family to blow apart. None of my elderly relatives ever had to go through anything like that, thankfully.
This is in no way diminishing anyone's sorrow and grief as they journey with their LO who is leaving this world piece by piece. Counting their blessings with them/for them is an exercise that helps me, and sometimes it helps them.
I try to recall all the wonderful memories we made over the years and treasure each one. Feeling sad that those are being lost a little at a time
over these dementia years. I try to think of how blessed we are to have
folks like ones here to help us. Blessed for each day we receive,
grateful we are still together and so thankful for all of you. I think what
can really pull us down, is how folks pull away and disappear when we
need them still in our lives. But all of you are our long distance friends.
There are days that I can focus just knowing someone else is
experiencing the same things and somehow managing. Prayers to all.
My dad had dementia and he was thought of as a highly intelligent man by those around him. Then his brain succumbed to making him say things similar to the quote in your post.
Dementia is to the elderly as a devastating illness with hallucinations and panic and fear and confusion (the list goes on) is to the young.
I wish I had some words of advice to give you--perhaps cry as often and as loud and as hard as you want to--in the car, the shower, into your pillow, where ever you wish, so you can get it out. And then go ahead and cry some more, if that's what you want to do. There is no time limit on grief.
I also did what I called "Therapeutic Screaming" in the car. I am sure there were times the people waiting at the red light next to me wondered