Hi there,
I am new here but have been reading some of the posts since beginning of December after my mother was diagnosed with vascular dementia in November.
I have been plucking up the courage to write this post and since I woke up at 3am this morning, I thought now would be a good time. The last two years has been tough. It started in March 2020 when my mother attended a routine hospital check up which ended with her being wheeled in to have an emergency operation on her spine. It was a few days before the March 2020 lockdown so I wasn’t able to see her the whole of that first lockdown. Although, the operation was successful over time, it has left her disabled as she wasn't able to do many of the things like exercising properly due to lack of human resources. Yes, she had some care etc. post op but these were limited due to the lockdown.
As a youngster, I was very close to my mother until turning 18, when I became very outspoken. My relationship with my mother was filled with arguments and disagreements with me not afraid to tell her when I thought she was wrong, so I left home some time during my 18th year. Over the years I guess my fiery attitude has simmered down a little especially now in my 60s.
I don't live with my mother due to the distance that separates us, as I live in London and she lives in Milton Keynes. After her op, she was quite reluctant for me to get involved with her care so one of my cousins who she was close to, did what he could for her. She also had her sister living with her for about 6 months until her husband was struck with prostate cancer and had to leave. Things came to a head after this point. Let me just say that, I am a retired Assistant Headteacher, and Computing Specialist, with over 30years of teaching and dealing with the 'system' and ‘authorities’.
My mother who is in her late 70s is a very proud woman but eventually gave me the ‘Let’s see what YOU can do’, challenge. Within a few weeks of taking her challenge, I had registered with social services, registered her as disabled, got her a blue badge (for use when others take her shopping), got her carers and much, much more.
Today, I travel to MK at least twice a week for my mother’s hospital visits and any other appointments. Her disability has got worse since the third lockdown. So carers are with her for three calls a day, which I am currently paying for as my mother’s savings is over the threshold, albeit we can’t access any of it until July/August this year. She agreed for me being her Power of Attorney, which we are still waiting to come through.
My mother’s diagnosis of vascular dementia came at a time when she herself started to notice changes in her memory but didn’t want to get the test to confirm. She was adamant that she did not have dementia even though all the signs pointed to it. In the end, I had to get her GP, who read my face brilliantly at the time, to do the initial test before booking her for the Memory Clinic. Our visit to the Memory clinic confirmed her dementia there and then because she wanted to know.
Before and since diagnosis there have been many evenings, I have left her, in tears due to some of the horrible things she had said to me. The worst one of these came publicly in front of one of her carers on the day of her dementia diagnosis. She was so hysterical she screamed some really hurtful things at me and eventually saying I should leave her to die! This blow up was the turning point for both of us. That night when I got home, I was just too upset, too tired and hungry to ring her to let her know my drive home had been safe. First thing the next day, she called me with an apology. This was significant as she never apologises. She was in tears realising that everything I had done since she let me in, no-one else could have done for her. She was afraid that her behaviour would stop me coming back to support and care for her. I reassured her that as her daughter, I couldn’t do that, I was simply returning the favour for all the years of sacrifice she gave us (4 children) as a single parent. We both cried.
Unfortunately, all my siblings live abroad with their families, so it has been left to me to do all the caring and support. The irony of it was, I too was offered a job abroad, in Japan but my new boss fell ill so everything fell through. She tells other people of this fact. One of my brother’s came over in September last year to add a little bit of moral support but had to go back due to his work commitments.
Right now, I feel like a fish out of water, constantly walking on eggshells, not really knowing how to encourage her to stop her from feeling down. She’s pretty stubborn so often stops me from doing the things I think will make her life easier. How do you get around this? I am trying to get her out to participate in things but at present she is reluctant. She wants to wait until the summer. I am still getting my head around it all, reading all the information I can get my hands on but is that enough?
I am in tears virtually every morning when I think about how quickly life has changed for us and will continue to change. At the moment her dementia isn’t too bad, I just remind her of things often and repeat myself often. I really understand the sense of losing control I think she feels. What more can I do?
Sorry this post is very long but thank you for reading it.
LadyAbash
I am new here but have been reading some of the posts since beginning of December after my mother was diagnosed with vascular dementia in November.
I have been plucking up the courage to write this post and since I woke up at 3am this morning, I thought now would be a good time. The last two years has been tough. It started in March 2020 when my mother attended a routine hospital check up which ended with her being wheeled in to have an emergency operation on her spine. It was a few days before the March 2020 lockdown so I wasn’t able to see her the whole of that first lockdown. Although, the operation was successful over time, it has left her disabled as she wasn't able to do many of the things like exercising properly due to lack of human resources. Yes, she had some care etc. post op but these were limited due to the lockdown.
As a youngster, I was very close to my mother until turning 18, when I became very outspoken. My relationship with my mother was filled with arguments and disagreements with me not afraid to tell her when I thought she was wrong, so I left home some time during my 18th year. Over the years I guess my fiery attitude has simmered down a little especially now in my 60s.
I don't live with my mother due to the distance that separates us, as I live in London and she lives in Milton Keynes. After her op, she was quite reluctant for me to get involved with her care so one of my cousins who she was close to, did what he could for her. She also had her sister living with her for about 6 months until her husband was struck with prostate cancer and had to leave. Things came to a head after this point. Let me just say that, I am a retired Assistant Headteacher, and Computing Specialist, with over 30years of teaching and dealing with the 'system' and ‘authorities’.
My mother who is in her late 70s is a very proud woman but eventually gave me the ‘Let’s see what YOU can do’, challenge. Within a few weeks of taking her challenge, I had registered with social services, registered her as disabled, got her a blue badge (for use when others take her shopping), got her carers and much, much more.
Today, I travel to MK at least twice a week for my mother’s hospital visits and any other appointments. Her disability has got worse since the third lockdown. So carers are with her for three calls a day, which I am currently paying for as my mother’s savings is over the threshold, albeit we can’t access any of it until July/August this year. She agreed for me being her Power of Attorney, which we are still waiting to come through.
My mother’s diagnosis of vascular dementia came at a time when she herself started to notice changes in her memory but didn’t want to get the test to confirm. She was adamant that she did not have dementia even though all the signs pointed to it. In the end, I had to get her GP, who read my face brilliantly at the time, to do the initial test before booking her for the Memory Clinic. Our visit to the Memory clinic confirmed her dementia there and then because she wanted to know.
Before and since diagnosis there have been many evenings, I have left her, in tears due to some of the horrible things she had said to me. The worst one of these came publicly in front of one of her carers on the day of her dementia diagnosis. She was so hysterical she screamed some really hurtful things at me and eventually saying I should leave her to die! This blow up was the turning point for both of us. That night when I got home, I was just too upset, too tired and hungry to ring her to let her know my drive home had been safe. First thing the next day, she called me with an apology. This was significant as she never apologises. She was in tears realising that everything I had done since she let me in, no-one else could have done for her. She was afraid that her behaviour would stop me coming back to support and care for her. I reassured her that as her daughter, I couldn’t do that, I was simply returning the favour for all the years of sacrifice she gave us (4 children) as a single parent. We both cried.
Unfortunately, all my siblings live abroad with their families, so it has been left to me to do all the caring and support. The irony of it was, I too was offered a job abroad, in Japan but my new boss fell ill so everything fell through. She tells other people of this fact. One of my brother’s came over in September last year to add a little bit of moral support but had to go back due to his work commitments.
Right now, I feel like a fish out of water, constantly walking on eggshells, not really knowing how to encourage her to stop her from feeling down. She’s pretty stubborn so often stops me from doing the things I think will make her life easier. How do you get around this? I am trying to get her out to participate in things but at present she is reluctant. She wants to wait until the summer. I am still getting my head around it all, reading all the information I can get my hands on but is that enough?
I am in tears virtually every morning when I think about how quickly life has changed for us and will continue to change. At the moment her dementia isn’t too bad, I just remind her of things often and repeat myself often. I really understand the sense of losing control I think she feels. What more can I do?
Sorry this post is very long but thank you for reading it.
LadyAbash