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Getting my head around it all

LadyAbash

New member
Dec 9, 2021
4
0
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
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,281
0
Nottinghamshire
Welcome to Dementia Talking Point @LadyAbash . I’m glad you’ve found us and well done on getting your first post out 🙂

It’s never easy trying to do the best for someone with dementia as they will always say no to anything new, or my PWD did anyway!

I found dad would try something if I arranged it for him and presented it as a done deal. Some things worked, some didn’t - but what was accepted made a difference for both of us. Do you think this sort of approach might work with your mum?
 

LadyAbash

New member
Dec 9, 2021
4
0
Hi @Bunpoots

Thank you for your speedy reply. It's great to be able to get somethings off my chest.

I have tried many things including what you suggest. Due to her 'capacity', I have started taking the laid back approach, giving her time to think about suggestions before deciding to leave it for now. I am currently of the view that she says No to things as her way of keeping control in a situation that seems to be spiraling out of control.

Your suggestion can be revisited

All the best
LadyAbash
 

canary

Registered User
Feb 25, 2014
18,140
0
South coast
Im afraid the nastiness is very common @LadyAbash , particularly in the early stages when they are desperately trying to maintain control. Often, they at times genuinely do not realise that their problems are due to their own dementia and think that other people (particularly their relative/carer) is the cause. This is usually worse when they are tired and even more confused. My mum and OH have said some truly horrible things to me and, yes, it hurts. All you can do is walk away and count to ten......
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,374
0
71
Dundee
Welcome to the forum @LadyAbash. I’m so glad you plucked up the courage to post today. You will already be seeing that you are amongst people who understand and you will get lots of help and support here.

This thread may be useful to you as time goes on -

 

Violet Jane

Registered User
Aug 23, 2021
777
0
The default response of a PWD is to say ‘no’ to anything that is suggested, whether that’s carers, cleaners, sitters, day centres or respite. It goes against one’s natural instinct, which is to discuss and get agreement to things, but there comes a point where you have to go ahead and arrange things that the PWD needs, AND ALSO WHAT THE CARER / FAMILY MEMBER NEEDS, without his/her agreement otherwise things won’t change and the situation becomes unsafe or grossly unsatisfactory or the carer breaks down.
 

taliahad

Registered User
Nov 22, 2021
51
0
What a moving and honest post, a lot of it really resonated with me. I'm so very sorry for you and for anyone who is on this awful journey. Regarding the temper and nastyness from your mother, I found that Risperidone helped my mun a lot, maybe speak to her doctor. Best of luck.
 

LadyAbash

New member
Dec 9, 2021
4
0
Hi @canary

Thank you for sharing. I think you are right about counting to 10 and walking away.
Pre diagnosis, I tended to react to the blow ups but soon started to realise that the situation needed to be investigated. Once I came to the realisation, I started walking away.

LadyAbash
 

LadyAbash

New member
Dec 9, 2021
4
0
@Izzy Thank you so much for pointing me to the Compassionate Communication.... I have read it twice now. Definitely something I will keep as a reference and reminder to myself. I think it will also help me gain a better understanding of the condition.

LadyAbash
 

Izzy

Volunteer Moderator
Aug 31, 2003
66,374
0
71
Dundee
@Izzy Thank you so much for pointing me to the Compassionate Communication.... I have read it twice now. Definitely something I will keep as a reference and reminder to myself. I think it will also help me gain a better understanding of the condition.

LadyAbash

I’m so glad you found it helpful.
 

Muttimuggle

Registered User
Dec 28, 2021
189
0
Im afraid the nastiness is very common @LadyAbash , particularly in the early stages when they are desperately trying to maintain control. Often, they at times genuinely do not realise that their problems are due to their own dementia and think that other people (particularly their relative/carer) is the cause. This is usually worse when they are tired and even more confused. My mum and OH have said some truly horrible things to me and, yes, it hurts. All you can do is walk away and count to ten......
This is really such a helpful comment. It explains a lot to me. And the difference in the past for me has been my inability to walk away and count to 10...particularly pre-diagnosis and when my brother(who I have learned is termed as an "invisible" sibling) has been telling her she is coping really well with everything...but hasn't really not been there enough to really examine what is going on in her house and her life. I am trying to feel more confident now about the decisions I have made for my mother - most of which she just didn't want or see the need for.....and this site has helped me immensely. It has made me feel validated, more sane and it is helping me to do more counting to ten.
 

Lawson58

Registered User
Aug 1, 2014
2,789
0
Victoria, Australia
The default response of a PWD is to say ‘no’ to anything that is suggested, whether that’s carers, cleaners, sitters, day centres or respite. It goes against one’s natural instinct, which is to discuss and get agreement to things, but there comes a point where you have to go ahead and arrange things that the PWD needs, AND ALSO WHAT THE CARER / FAMILY MEMBER NEEDS, without his/her agreement otherwise things won’t change and the situation becomes unsafe or grossly unsatisfactory or the carer breaks down.
How very true. I learned very early that life was a little easier if I didn’t actually ask a direct question because I knew that was heading for that dreaded answer.

I found that often I would simply ‘assume’ that he would agree and using a matter of fact tone of voice tell him what was happening. For example, I know you are playing bridge on Wednesday so I made your doctor’s appointment for Thursday. I would give him options when the answer didn’t really matter such as ‘It’s such a nice day, would you like to go out for lunch?’

It took a bit of practise but mostly it worked better than asking questions or trying to explain things because I knew that didn’t work either.
 

Vanessa Terry

Registered User
Sep 27, 2021
18
0
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 to this forum. I have been reading a lot of posts. One thing I have learned is that you or I are not alone. My mum has got Alzheimer’s and I moved in with her to help. I have had some similar things said to me. I have had to keep saying that it is not my mums fault. She doesn’t know what she is saying. Even if she says that she does know what she is saying. Knowing that you are not on your own and that this forum says it all. You are doing a great job
 

jaymor

Volunteer Moderator
Jul 14, 2006
14,831
0
England
Hi and a warm welcome from me too @LadyAbash .

When my husband was being awkward and argumentative my go to answer was ‘ I’m sorry you feel like that‘ and I would walk away. I was the winner because I walked away, I’m sure he thought he was because I had apologised.

When he was constantly asking the same question and it was becoming hard to deal with I would say I didn’t know put please give me a moment or two to think about it to try and remember. It gave me a breathing space and a count to 10 moment and I hoped it would help him to know in that moment that we all had memory problems from time to time and he wasn’t alone.

I never told him about appointments we just went out in the car. As going out daily was his ideal then getting him in the car was not a problem, keeping him in the house was. So when I got the ‘ why have we come here ‘ it was an ‘Oh sorry, I must have forgotten to say ‘. For me, being economical with the truth was a life saver And an offer of coffee and cake after was the prize at the end.

The forum is a very friendly and understanding place to come.
 

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