The other thing that kills me is there are some people who are caring for children and a person with these types of problems... and working!

I also notice that most people avoid these situations all together. I have seen some families rally together... even if the person has one primary caregiver, the other family member pitch in.  But in far too many cases, it's one person doing most if not all of the work. Denial is a factor too.

I think every family goes through a period where the thing the person is okay or at least not as bad as the person on the scene tells them. It's heartbreaking. 

But there are good things that come from doing this very hard job. I mean, it pleases God for one thing. But it's also incredibly humbling. It forces you to get over yourself and care for this other human being who needs you.

I did live in care support care for my stepdad for two years. I don’t really know what to say. It was ugly, sad, hard, joyful, grueling, funny. Sometimes all within the same hour. Laughter was my coping mechanism for sure. My stepdad was great with getting in the shower for instance but would not get out. He would cling to the support bars naked, cold in the corner of his large walk in shower and I would have to pry his hands off. For some reason this would make me laugh hysterically but like I said, I think it was a coping mechanism. He would say “don’t laugh at me” but I figure it was better than getting mad. I say all that because in those situations we weren’t going to abandon him so that’s what he had if he wanted to stay out of the hospital. 

But, I absolutely do not blame people for putting their loved ones in a “home” but from what I’ve seen it’s better for them to stay at home. Going through it though I know not everyone is cut out for it. I don’t even blame people who drop their parents off and never visit because even that would bring up difficult feelings that only tough people could handle including guilt. Maybe watching from afar is even more difficult because it’s an even more powerless position. A caregiver can at the very least offer stability even if it’s not recognized by the person with dementia. I don’t know, I just forgive people who are not cut out for it but realize that many of the trials associated with it are unavoidable for anyone in the vicinity of someone with dementia. 

There is also something called caregiver fatigue that me and my mom both experienced. Makes sense that it would cause fatigue because it’s almost like caring for a giant toddler. In reality the whole thing is less about watching them deteriorate but more about what it brings out in those around them. Because their path is clear- it’s easy to see where it’s going- it’s NOT GOING TO GET BETTER, will only get worse and in many ways they are gone before their body. 

Thats been some of my experience. I do also have a theory that there is an emotional component to it- sadness and grief. It’s a way for the person to disassociate from those feelings. Not that that’s it in entirety, but I’ve seen that the emotional body can often be linked to the neurological system (well all systems really). Again, just an idea, I’m not ready to debate it. 

I can’t for a moment venture a guess at what my stepdads experience was like. 

My dad had AD for almost 6 years and my mom and I were caregivers. In my country, back then, almost 20 years ago, this disease was rare and not very familiar, and that kind of patients didn't have the right medical care or place where you could put them, the only choice left was to put them in hospice care and conditions there were not human, so we decided that my dad will stay at home. And so he did. I was just 19 when he got sick. My mom was working 5 different jobs, and my brother and I were students at university. My mom was a strict woman and she never allowed us not to study or do our duties just because our father was really ill. So, we did it all. The study, work, and care for him. In the beginning, he was more physically strong, so there was all sort of attacks on us, he would hit us, swear, he wanted to go home (his hometown), he escaped two times, emotionally unstable, you name it. Day by day he was losing his memory more and more, but we started searching for things that would help him. Some things I can recommend: a complex of vitamin B, especially B16 is helping the brain to stay vital, daily exercise and neck massage and routine. Don't let them lay in bed, if that happens, everything gets so much harder, they need to be on their feet and do things by themselves as long as it's possible. Changing places, like taking such patients from place to place is damaging them more and they start losing their memory faster, and that's why routine is very important. They are like children. And one of the most important things is, to play the role. My dad saw me as a boy, so I pretended I was a boy and when he would call me with the boy's name, I would answer. Whatever role he would see in me, I would pretend it's really the truth. If you oppose it, it will make them very nervous and anxious and it will upset them. They see things we don't, the best is to pretend we see it too, it will calm them better and faster.

My dad didn't see me as his daughter for years, but once, he gave me a kiss on the cheek and told me: You are my best friend. My dad adored me when he was healthy, but our relationship was rocky when he got AD. I was young, so young, and I decided to embrace huge responsibility due I didn't have to, but he was my dad. I would have done anything for him. For and last two years of his life, I was his prime caregiver because I didn't have classes at uni, just exams to pass, so we spent a lot of time together. Like my mom, he was dying in my arms before going to the hospital. Both of them didn't want to die at home and I managed it to happen, but until the end, they were with me. Just one night away, the next morning they were gone. 

This kind of experience marks you for the rest of your life. I didn't cry when they both die, I have delayed grief, but I can handle anything and anyone. I'm not afraid anymore, already I have lived and gone through my biggest fear. I lost my beloved dad. I lost my mum. A few days I got a raise and I cried for 3 days because I couldn't call them and share the news. That's what hurt the most, they will never live my future with me nor they will meet my kids, the family I WILL have. I will have a family of my own, I will not let this experience drag me down, I will keep my head above the water and one day I will learn to accept I stayed alone. I know they are here with me, we just can't see each other, but we feel it and I'm in peace with it.

My mom had cancer and it was hard, brutal, but dementia breaks hearts into million pieces. There is a reason why they call AD 'long goodbye'. 

(((((Dori)))))

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Omg, do I have experience with this. Starting with my M-I-L living with my family for 5 entire years. She had a stroke and had aphasia and partial paralysis. The year after she moved in, my job had cut my hours. I had a neighbor who was a caregiver who got me a job at her agency. The first person I had was a Sicilian woman with Alzheimer’s who lived in a flat with her sister and family. They were amazing and treated me like family. I learned to speak a lot of Italian in those couple of years. But after she died, and I continued to do it, I did experience abuse by plenty of people. Some old people were plain mean and it had nothing to do with dementia. Finally found another sweet woman with heart failure, stayed with her through most of grad school until she passed away.

I was a caregiver for 6 years total, 7 if you include my M-I-L living with us and then in grad school I interned for a year providing therapy for people with developmental disabilities and the second year, I was a hospice social worker intern. I had to do some caregiving in that internship. Because there was this young daughter who lived with her mother who was on hospice and she wanted to go out and have a life. I took some weekends providing respite for her.

Even now, my job involves caring. I do a little bit of everything.

This all started during my Saturn return. I’d say God wanted to humble my ass or something. The hardest job on the planet. Caregivers should be paid way more!!!