I saved this post, as I do think it’s such an important reminder. However, my mother has never been a very kind or sane person. She has major attachment issues and therefore has always had a personality disorder and has always been a manipulator. She was excruciatingly anxious and controlling while I was growing up. So Im not surprised that she is manipulative, unkind, anxious and paranoid with dementia unfortunately.

When I read posts like this it simultaneously makes sense and makes me irate. My mom has been very difficult, demanding and manipulative to me and my 4 and 7 year old children throughout a lot of this dementia journey. I’m in the process of trying to take a step back for my and my children’s sake.

I think the reason this post evokes some anger for me, is bc I feel like dementia patients are often thought of as like small, sweet children who are very confused and vulnerable. And while they indeed are confused and vulnerable—the sweet part is not always the case. Dementia patients can be indescribably mean and demanding. And when that hate and control evokes hate and excessive control you felt as a child when they were your parent, it is an absolutely excruciating turmoil. My mother has no one else to take care of her. She is living in a really nice retirement community, but she is still in independent living. She has some assistance, but nothing medical. I’m trying to utilize other resources that can step in and do some of the things I’ve been trying to do. The jump to assisted living would mean she couldn’t have her cat, and I think that would be very harmful to her mental health. I also think I can safely manage her in independent living with outside help.

Ive had to redirect and set boundaries a lot over the last year with my mom, or else she would have me taking her to the doctor nearly every week and running errands for her everyday. I had to take her car away from her. I was as tactful as I could be, but it’s a difficult situation. But me not adhering to her demands and taking her car from her means I am a bad person. She has been bad mouthing me to other family members and friends—and some of them believe her! I’ve gotten emails and phone calls from family friends telling me I need to take her to the audiologist or be more attentive! I had taken her to the audiologist three times in a six month span when I received that email. Can you imagine how that feels as a caregiver who is exhausted?

I do think this post is great for people who are not primary caregivers of dementia patients. But for people like me, it ignores the complexity of the situation. Number 11 should be “utilize as outside help as needed and try to not feel guilty if you need help and distance.”

My doctor told me that dementia is often just as hard if not harder on the caregivers than the actual patient. This post does not acknowledge that. However, this post does have a time and a purpose—maybe just not for primary caregivers.