- Jun 27, 2020
Might as well jump right in, eh? I'm PGen98, also known as Chris, I'm 33 and I'm originally from Bolton, England -- ask me anything!
That does sound tough. My mother always knew who I was but she forgot relatives she didn't see as often like my daughter and the repetition is very common. My mum used to make up stories that she believed were real although they were too outrageous to be true.Yeah, it's something I would absolutely love to do, that extra family around would just be quite nice, particularly at this point in time. I'm my mother's full time caregiver, so each day I see her fading further and further away. She still knows that she knows me, but doesn't actually know who I am, and it's very difficult having her ask the same question 10 times a minute, or constantly getting up to "go home" because she thinks she lives in the children's home she lived in when she was young. It gets tougher and tougher every day and I feel like having that extra layer of family around might actually help to settle her down a little bit more.
I envy anyone that has the sheer patience to work with people with dementia. I've just got my mother and it's a full time job, so I can't imagine working with multiple cases at a time. Must be exhausting after a day of that! My mother does the stories, too, she'll make up that she was just with someone she hasn't seen in years, or that she knows a random stranger she sees on the side of the road as we're driving and hasn't seen them in ages. There's a shot that opened up early last year just around the corner from us, and she's convinced she knows the owner of it and he promised to give her the shop, despite the fact we've never set foot in it! It's funny, tragic and a bit irritating all in one go. That's probably the most difficult part of it for me, a lot of the repetition, the terrible attitude and the calling me every name in the book she can think of when she gets in said mood is very frustrating to deal with, but you have to keep it in your mind it's not her fault and it's not her saying it, it's the disease.That does sound tough. My mother always knew who I was but she forgot relatives she didn't see as often like my daughter and the repetition is very common. My mum used to make up stories that she believed were real although they were too outrageous to be true.
I used to work in an old people's home where a lady every day used to say she had to go and make her husband's tea and see to her children. Her husband had been dead for years and her children were grown but in her own way she was happy in her little world. Their long term memory lives on within them.
Hope you get to see your family soon.😘
To be honest I worked as a cook there so didn't have to care for the old people. It was a residential home for the elderly so they didn't all have dementia but I got to know them all personally, their funny little ways used to amuse me and I was always gutted when they died.
My mother was mean to me too. She used to check her bank statement and say that I had bought my contact lenses from her money when it was her hearing aid batteries. She used to bad mouth me to my sister too. They always attack the people who are closest to them. My nephew hardly ever went to see her but when he did you would have thought the Queen had come to visit as she would praise him for hours regardless of the fact he could go for a year and not bother. It's hard to take.
I am guessing as you are only 33 your mother has early onset of dementia. My mother was old and it started in her 80s but she died at the age of 90. I had mixed feelings about it, and of course I was sad, but she was anxious all the time without knowing why and although I feel guilty for saying it, the relief of not having to worry about her all the time was wonderful.
To me it is young to get dementia as I am 70 and have very good mental and physical health. I do worry about it as it runs all down my mother's line. Her father and both her brothers had it too but so far so good. I get memory lapses like everyone of my age but nothing too serious.Ah, yeah, that's probably the best position to be in, I'd imagine. The chance to interact and get to know them, and yet still distanced from the mayhem. It's great getting to know people, particularly the older generations who feel like no one wants to know them, I've always found older people to be some of the most incredible people to talk to, about quite literally anything. It is devastating when they die, though, because you do indeed get to know them and appreciate their company.
It's very hard to take when they treat you like dirt and everyone else like they're absolute saints. I've gotten used to it, however sad that might sound, but you learn to treat it as what it is, the disease rearing its' ugly head once again. Now I just wait patiently for the fleeting moments during which she is herself. They last for a couple of minutes, she knows who I am and she apologizes for being so grumpy lately, and she even thanked me once for helping her, and then just like that it's over and she's gone again, usually for months on end...back into the spiral. It's a horrible, horrible way to lose someone, I wouldn't wish it anyone.
My mother's 74 now, so it's not exactly early onset, I was a later in life birth, she was in her 40s when she had my sister, and then me. She had our half sister and brother in her 20s, they're 16 and 17 years older than us, respectively. She's had it for about 5 years now, though it was not at all bad at first, just a poor memory, and it progressed so fast over the past 3 years or so. I understand the relief you likely felt, very much so. As self-serving and selfish as it may seem to others, the toll it takes on you, looking after someone with dementia, is quite staggering.
To me it is young to get dementia as I am 70 and have very good mental and physical health. I do worry about it as it runs all down my mother's line. Her father and both her brothers had it too but so far so good. I get memory lapses like everyone of my age but nothing too serious.
I do feel for you because even though you know it's the disease making her behave the way she does it can still make you angry to feel unappreciated for all the things you do. You could really do with some support but of course this lockdown is making it impossible to travel anywhere right now. As soon as it's lifted you could think about taking that trip to the UK although I'm wondering how your mum would react to being taken from her home and flown across the pond to be with people she probably can't remember.
I have had legal custody of my granddaughter for the last 10 years. She is 14 now and a bit of a nightmare. My mum stayed in her own home until the last 18 months of her life and then went into a residential home as she wasn't safe to be living alone. She would never have coped with an unruly child so I couldn't have her in my home. They were very good to her there. It was the same home I worked in so I knew everybody which made it easier. Would you consider that if you came back here or do you prefer to look after her yourself?
You must be a very caring person as my kids are 34 and 39 and I'm pretty sure they wouldn't look after me!
You know I sometimes feel a bit hard done by having to look after my granddaughter as she is really difficult. I feel that this should be my time to enjoy as we never know what is around the corner and I don't know how many good years I have left, but hearing your story has made me realise that there are people far worse off than me. I have a Special Guardianship Order (SGO)and get paid quite well to look after her. She is my son's child and both he and the mother were heroin addicts which is why I have her.
We don't know why life throws these obstacles in our way and I often look at other people and wish I had such a simple life but it is what it is. I have some good friends but only a very small family as my parents are both gone. I wish you the very best in life, you are still young and have plenty of years ahead of you, you just need some support to help you through these difficult years.