Middle school through high school I helped my (immediate) family take care of my grandmother with dementia. It was hard to deal with, both emotionally and physically. My aunt and uncle told my mother, “if you wanna send her to a nursing home we understand”, but we didn’t want to. It’s so commonplace to just throw someone away when things get rough (not to mention the abuse that goes on in places like that!).
It’s like she lost value as a human being because she was old, because she had developed dementia. When my grandmother would get upset (because she was often confused about what was going on) it made people uncomfortable, they would stare, or they wouldn’t engage with her.
She was still my grandmother, she was still my cousin’s grandmother and my aunt and uncle’s mother, but they didn’t treat her like she was there. We begged them to help by watching her while we were at work/school, and despite them doing that for a short few hours a week it was still such a burden to them.
The most my extended family showed up was when she was under hospice care for a week at my house before she died. I mourned both my grandmother and what she had to go through, from dementia itself and how she was treated by people who supposedly loved her so much when she was able-minded.
Though it may be due to my own ignorance, I never fully understood getting very old or dementia as a disability. It was never spoken about in that way, in popular media or by my family. It was unspoken, like being labeled with a disability was the ultimate disgrace. There is a disregard for individuals who need help, but asking for and receiving help shouldn’t be so shamed.
If we cannot offer help to those who need it, how do we expect to receive help when we’re the one begging for help? Disability isn’t a bad thing, it doesn’t make you any less of a human being, it just means you need different things, but don’t we all? As a society, why are disabled people less valued? How can we show empathy, respect and patience?
Unruly Bodies 
Thank you so much for sharing your experience with your grandmother. I have a similar experience with my own grandfather. We took care of him for years before his dementia became so severe that he was a danger to himself and sometimes others. Looking for a good assisted living home was so difficult and we felt so guilty placing him in one, but we had no other choice at that point. I think America’s treatment of the elderly is horrible, once a person reaches a certain age they become a burden and something to almost forget. I wish that there was a way that we could honor the elderly disabled people in our communities, and honestly I feel lost about what to even suggest we do to fix this. The treatment of the elderly is not something that we can expect to change greatly, unfortunately, because not enough people care about the issue. We push off issues that come along with being old until we are old ourselves.
Hello,
I never had the need to take care of my grandmother because of a health issue but I can totally understand your burden watching family apparently caring less about the life of a family member. In my experience, during COVID my grandmother got really sick to the point the doctors believed she was going to die. Suddenly, while my grandmother was at the hospital during those “last days”, my uncle appeared with a brand new car, as if she was going to die and he would inherit the money to pay for it. Thankfully, she recuperated and did not die which put a huge burden on my uncle’s feelings (it could easily be appreciated).
Thank you for sharing your experience ❤
You are a beautiful human being. I know it was hard as a kid to see your grandmother like that and instead of putting her in a nursing home you wanted to help her. I don’t believe your extended family treated her badly because they looked down on her, sometimes taking care of someone is overwhelming and they could have had trouble coping with the loss of the woman they once knew. I don’t agree with their actions but it could be something to think about. I appreciate your empathy, it is rare to come by nowadays.
Hello, thank you so much for sharing your story with us. I think you are such a strong individual being able to take care of your grandmother and being able to endure the pain to see her slowly declining. I cannot imagine how hard that is to deal with so I praise for being able to go through that. I will say though that I agree with what the above comment said. Some people just cannot cope well with a love one dying so they kind of just push themselves away and make them forget about it. It is bad way to cope with something but many people do it. I definitely agree though that disabled people are mistreated in society.
Thank you for sharing this story and your insight on it. The way that older people with these issues are treated by their families, their children,, and society at large is something that needs to be addressed. It’s scary enough having to deal with the consequences of our bodies and minds aging and breaking down. However, regardless, we are still people. It’s unfair that a person is no longer seen as one just because they got older or developed a disability.
my family and I went through something similar, my grandma had dementia as well and just recently passed away a few weeks ago. My mother quit her job to take care of her because we did not want to put her in a nursing home because of the language barier, and the idea of this is uncomfortable since its not her real home. Many of my family members live really close to us but never came to visit my grandmother which made me so angry. I felt as if they did not care about her, they just are selfish and that they did not care o see their grandmother who raised them, who worked so hard to give them food to give them a house to live in. at the end of the day i came to a conclusion that people will do what ever is convent for them and that they will do anything that benefits them.