Hello everyone,
Newby and first post!
I’ve never thought to get any support but recently realised that I’m just not coping and think this is a good starting point. I’ve also decided that I’m going to be painfully honest in the hope I can stop kidding myself and take on any advice.
I am 27 (I understand I’m not necessarily a young adult anymore as I am pushing 30 but I’ve been dealing with this for many years now), my mom is 67 and has been diagnosed with dementia for nearly 7 years.
At first we thought her problems were due to something like a tumour, when it turned out to be dementia I didn’t understand or accept what that meant.
My family is unusual but functional. My parents are still marrried but haven’t been a couple since I was in my early teens. They continued to live together for our sake (my brother and I) but we always knew they weren’t in a relationship anymore. My dad is now her carer and it amazes me everyday the sacrifice he makes to care for the mother of his children even though he isn’t romantically connected to her. He also has a new partner. My mum doesn’t know about her (and wouldn’t understand/remember anyway, plus not worth the hassle and potential worry) and I am thrilled that he is so happy with his new found partner and companion.
My brother is a similar age to me but lives mostly with his girlfriend. He also cares for her a lot of the time. I couldn’t tell you whether he is coping or not, but I know he isn’t happy.
Mum is deteriorating at a rapid pace. She can walk,talk, dress and wash herself. Everything else is a huge struggle. She cannot cook, use a phone, navigate a cohesive conversation or problem solve. We also believe she has always been on the autistic spectrum and so her personality and mental capacity is complex and sometimes baffling. She needs constant attention 24 hours a day. If left alone for just an hour will become extremely distressed and confused. She also needs constant guidance. If left to her own devices, she would wear the same dirty clothes everyday, make an omelette for every meal and sit in front of the tv all day (with it switched off because she doesn’t have the intuition or capacity to turn it on). She would stand in front of an open car door and need to be told to get inside. Every movement and action has to be pre empted. It is exhausting and when in public people often stare at us confused and wonder why her behaviour is so bizarre. I openly tell people she has dementia and they look at me even more confused because she does not look old enough to be 67 let alone old enough to have dementia (in their eyes, of course people suffer with dementia from a range of ages).
I feel extremely guilty for admitting this but out of all the mixed emotions I feel, anger is the strongest. I am angry that I am having to deal with this so soon, I am angry at her for not being the mum I expect her to be, I am angry that she has spent her working life looking after people with dementia as a social worker and her retired life as a dementia sufferer, I am angry that I had to buy my first house down the road from them to help with care and that I want to move away somewhere new and I am jealous of other peoples parents and their close relationships with them. I am also sad. Everyday.
I’m engaged. I told my fiancé that if it got to the point where she doesn’t understand what she is doing or where she is that I would rush the wedding and get it done quickly. That point has now far gone. She won’t understand the time of day let alone that she is at her daughters wedding. I honestly don’t know how I will cope and I don’t want my wedding day to be full of sadness because of her illness.
I’m not sure what I’m looking for really but any words of wisdom, advice, support or recommendations would be greatly appreciated at this time. It is dawning on me that this is not the end. It is going to get worse, a lot worse and the distress I feel now is only going to increase.
Sorry for the wordy post. Fair play if you have reached this far and thank you for taking the time to read it.
Take care everyone,
Love to all,
Your pal,
rose x
Newby and first post!
I’ve never thought to get any support but recently realised that I’m just not coping and think this is a good starting point. I’ve also decided that I’m going to be painfully honest in the hope I can stop kidding myself and take on any advice.
I am 27 (I understand I’m not necessarily a young adult anymore as I am pushing 30 but I’ve been dealing with this for many years now), my mom is 67 and has been diagnosed with dementia for nearly 7 years.
At first we thought her problems were due to something like a tumour, when it turned out to be dementia I didn’t understand or accept what that meant.
My family is unusual but functional. My parents are still marrried but haven’t been a couple since I was in my early teens. They continued to live together for our sake (my brother and I) but we always knew they weren’t in a relationship anymore. My dad is now her carer and it amazes me everyday the sacrifice he makes to care for the mother of his children even though he isn’t romantically connected to her. He also has a new partner. My mum doesn’t know about her (and wouldn’t understand/remember anyway, plus not worth the hassle and potential worry) and I am thrilled that he is so happy with his new found partner and companion.
My brother is a similar age to me but lives mostly with his girlfriend. He also cares for her a lot of the time. I couldn’t tell you whether he is coping or not, but I know he isn’t happy.
Mum is deteriorating at a rapid pace. She can walk,talk, dress and wash herself. Everything else is a huge struggle. She cannot cook, use a phone, navigate a cohesive conversation or problem solve. We also believe she has always been on the autistic spectrum and so her personality and mental capacity is complex and sometimes baffling. She needs constant attention 24 hours a day. If left alone for just an hour will become extremely distressed and confused. She also needs constant guidance. If left to her own devices, she would wear the same dirty clothes everyday, make an omelette for every meal and sit in front of the tv all day (with it switched off because she doesn’t have the intuition or capacity to turn it on). She would stand in front of an open car door and need to be told to get inside. Every movement and action has to be pre empted. It is exhausting and when in public people often stare at us confused and wonder why her behaviour is so bizarre. I openly tell people she has dementia and they look at me even more confused because she does not look old enough to be 67 let alone old enough to have dementia (in their eyes, of course people suffer with dementia from a range of ages).
I feel extremely guilty for admitting this but out of all the mixed emotions I feel, anger is the strongest. I am angry that I am having to deal with this so soon, I am angry at her for not being the mum I expect her to be, I am angry that she has spent her working life looking after people with dementia as a social worker and her retired life as a dementia sufferer, I am angry that I had to buy my first house down the road from them to help with care and that I want to move away somewhere new and I am jealous of other peoples parents and their close relationships with them. I am also sad. Everyday.
I’m engaged. I told my fiancé that if it got to the point where she doesn’t understand what she is doing or where she is that I would rush the wedding and get it done quickly. That point has now far gone. She won’t understand the time of day let alone that she is at her daughters wedding. I honestly don’t know how I will cope and I don’t want my wedding day to be full of sadness because of her illness.
I’m not sure what I’m looking for really but any words of wisdom, advice, support or recommendations would be greatly appreciated at this time. It is dawning on me that this is not the end. It is going to get worse, a lot worse and the distress I feel now is only going to increase.
Sorry for the wordy post. Fair play if you have reached this far and thank you for taking the time to read it.
Take care everyone,
Love to all,
Your pal,
rose x