This was beautiful and sad. I remember getting the calls from rehab for my mom. Nighttime brought nightmares. I couldn’t drive, so I would spend hours with her on the phone to help reality come back. My father and I were able to bring her home for palliative care per choice. I think it was a true gift. My father is now 85, post brain cancer and treatment. He is often confused but again, I’m blessed he is still around.
My mom had dementia for 19 years. As her brain declined, she still experienced all the old age illnesses that she normally would have had, but it was hard for her to keep hold on what was happening, and why. It was challenging.
For the first six years, my brother and mom’s sisters refused to acknowledge it. Finally, when her mom died, and we all gathered for the funeral it was painfully obvious that my mom was no longer herself.
My daughter moved in with her and helped immensely, then we had caregivers come to the house, but one night my daughter called and said that grandma is in trouble and we needed to come. We ended up in the emergency room and turns out Mom had taken some sleeping pills bought at the grocery store, her caregiver didn’t know they were the same as Benadryl, which is horrible for the dementia brain. Also, did you know Imodium is horrible for the dementia brain?
That visit gave us gave us the blessing of a doctor in the UCSF geriatrics department who both cared for Mom and taught us how to.
That was fine until one night mom blew up all the corning ware dishes in the oven using the clean setting (still not sure how she did that as all the knobs were gone) and could only speak in a kind of word salad. The doctor surmised she had suffered some little strokes, but after that mom moved into an incredibly wonderful assisted living situation where she lived until she had a bladder infection that was not getting better and we ended up again in the emergency room.
We found out she had an inoperable cancer, and she died a week later.
We didn’t leave her alone that week, we spent many hours playing her favorite music and telling her stories, the same ones she had told us when we were little about growing up on a ranch in the 1930s and 40s. She dreamed a lot and spoke in clear sentences, something she had not done in years.
She was still mom when she died, but we had really lost her when she no longer recognized us as her children or her grandchildren. She was always looking for us, but in her mind we were little kids and she was age 28. She’s still knew her sisters and loved talking to them on the phone. Visiting was hard because of Covid, but they got to see her once before she died.
We were so incredibly lucky to have the resources to cover her needs. That said, nothing prepares you any of it, it’s exhausting and it’s really weird.
Like when mom suddenly decided my brother was her boyfriend, which freaked him out big time but we understood was just misplaced love.
Like when mom was hallucinating and got mad at my daughter for renovating her bedroom without permission but actually she was in a hospital room.
Like the time she had surgery and I tried to warn the doctors and nurses at Stanford what she was going be like when she woke up (furious, swearing) but man did they come running when she did. I later overheard the doctors saying “maybe we should give them all Ativan, maybe that will help”.
Like when she failed the driving test after her doctors wrote to the department of motor vehicles to revoke her driving privileges, and she told me that she didn’t kill anyone or hit anything and she just couldn’t understand it.
The experience reminded me of surfing, of trying to stay on top of a wave, not always being able to do it, but loving it when you do, and you keep trying because the waves just keep coming. Stay in the moment, enjoy the little blessings and remain flexible.
I took care my Mom with dementia for 8 years. Very hard disease to understand. It was hard to watch the deterioration
This was beautiful and sad. I remember getting the calls from rehab for my mom. Nighttime brought nightmares. I couldn’t drive, so I would spend hours with her on the phone to help reality come back. My father and I were able to bring her home for palliative care per choice. I think it was a true gift. My father is now 85, post brain cancer and treatment. He is often confused but again, I’m blessed he is still around.
Thank you. You were a blessing to your mom. Nobody will ever truly know the strength and courage you gave her. I'd give anything to have my dad here.
My mom had dementia for 19 years. As her brain declined, she still experienced all the old age illnesses that she normally would have had, but it was hard for her to keep hold on what was happening, and why. It was challenging.
For the first six years, my brother and mom’s sisters refused to acknowledge it. Finally, when her mom died, and we all gathered for the funeral it was painfully obvious that my mom was no longer herself.
My daughter moved in with her and helped immensely, then we had caregivers come to the house, but one night my daughter called and said that grandma is in trouble and we needed to come. We ended up in the emergency room and turns out Mom had taken some sleeping pills bought at the grocery store, her caregiver didn’t know they were the same as Benadryl, which is horrible for the dementia brain. Also, did you know Imodium is horrible for the dementia brain?
That visit gave us gave us the blessing of a doctor in the UCSF geriatrics department who both cared for Mom and taught us how to.
That was fine until one night mom blew up all the corning ware dishes in the oven using the clean setting (still not sure how she did that as all the knobs were gone) and could only speak in a kind of word salad. The doctor surmised she had suffered some little strokes, but after that mom moved into an incredibly wonderful assisted living situation where she lived until she had a bladder infection that was not getting better and we ended up again in the emergency room.
We found out she had an inoperable cancer, and she died a week later.
We didn’t leave her alone that week, we spent many hours playing her favorite music and telling her stories, the same ones she had told us when we were little about growing up on a ranch in the 1930s and 40s. She dreamed a lot and spoke in clear sentences, something she had not done in years.
She was still mom when she died, but we had really lost her when she no longer recognized us as her children or her grandchildren. She was always looking for us, but in her mind we were little kids and she was age 28. She’s still knew her sisters and loved talking to them on the phone. Visiting was hard because of Covid, but they got to see her once before she died.
We were so incredibly lucky to have the resources to cover her needs. That said, nothing prepares you any of it, it’s exhausting and it’s really weird.
Like when mom suddenly decided my brother was her boyfriend, which freaked him out big time but we understood was just misplaced love.
Like when mom was hallucinating and got mad at my daughter for renovating her bedroom without permission but actually she was in a hospital room.
Like the time she had surgery and I tried to warn the doctors and nurses at Stanford what she was going be like when she woke up (furious, swearing) but man did they come running when she did. I later overheard the doctors saying “maybe we should give them all Ativan, maybe that will help”.
Like when she failed the driving test after her doctors wrote to the department of motor vehicles to revoke her driving privileges, and she told me that she didn’t kill anyone or hit anything and she just couldn’t understand it.
The experience reminded me of surfing, of trying to stay on top of a wave, not always being able to do it, but loving it when you do, and you keep trying because the waves just keep coming. Stay in the moment, enjoy the little blessings and remain flexible.
One of these days I'll have to tell the story of my Dad's driving test. Not pretty.
Thanks for sharing so much. I loved “maybe we should give them all Ativan, maybe that will help”