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My Mum is 60 years old. She has just received a diagnosis of early onset Alzheimers.

Gayle_23

New member
Jan 30, 2021
1
0
Exeter
Hi everyone,

I had considered joining Talking Point last year, however I felt uncomfortable sharing my experience about Mums memory without a diagnosis. Getting to a diagnosis has been a struggle for my siblings, Dad, Mum and I.

I was 19 when our family started to notice changes to Mums memory, and I am now 26. The events leading up to a diagnosis has had a big impact on my mental health, and I don't know how to get help to cope with my emotions. I am currently doing a second round of Cognitive Behavioral Therapy, however the therapist told me that he cannot assist me with coping with Mums memory.

The details below are lengthy (apologies in advance).

We began to notice changes in Mums personality after she experienced a couple of years of unemployment. We noticed that she would ask the same questions regularly, she would sit alone to colour/do crossword puzzles a lot, and financial issues arose which she refused to talk about until it got serious.

My sisters and I voiced our concerns to our Dad repeatedly and he kept reassuring us that we had nothing to worry about, and that Mum believed menopause/an incorrect prescription dose had caused the memory decline up to that point. As time went on, Dad began to ask us not to speak to Mum about our concerns and to be patient with her when she repeated herself.

In 2018, Dad spoke to Mum for the first time directly about her memory decline, and that she should see a doctor. Mum could not admit to herself or to Dad that there was anything wrong with her memory. So, my sisters and I kept nagging Dad to reason with Mum again or could we try voicing our concerns to her as well. Dad chose to share our feelings with Mum, rather than letting us do so.

Mum and Dad finally went to the doctors last February to discuss her memory decline, and then the first lockdown happened. Further testing was put on hold until the start of November. I received the news today that Mum has been diagnosed with early onset Alzheimers.

Thank you for reading all of this, I really appreciate it. Please let me know if you have any advice on coping strategies during this time.
 

kindred

Registered User
Apr 8, 2018
2,578
0
Hi everyone,

I had considered joining Talking Point last year, however I felt uncomfortable sharing my experience about Mums memory without a diagnosis. Getting to a diagnosis has been a struggle for my siblings, Dad, Mum and I.

I was 19 when our family started to notice changes to Mums memory, and I am now 26. The events leading up to a diagnosis has had a big impact on my mental health, and I don't know how to get help to cope with my emotions. I am currently doing a second round of Cognitive Behavioral Therapy, however the therapist told me that he cannot assist me with coping with Mums memory.

The details below are lengthy (apologies in advance).

We began to notice changes in Mums personality after she experienced a couple of years of unemployment. We noticed that she would ask the same questions regularly, she would sit alone to colour/do crossword puzzles a lot, and financial issues arose which she refused to talk about until it got serious.

My sisters and I voiced our concerns to our Dad repeatedly and he kept reassuring us that we had nothing to worry about, and that Mum believed menopause/an incorrect prescription dose had caused the memory decline up to that point. As time went on, Dad began to ask us not to speak to Mum about our concerns and to be patient with her when she repeated herself.

In 2018, Dad spoke to Mum for the first time directly about her memory decline, and that she should see a doctor. Mum could not admit to herself or to Dad that there was anything wrong with her memory. So, my sisters and I kept nagging Dad to reason with Mum again or could we try voicing our concerns to her as well. Dad chose to share our feelings with Mum, rather than letting us do so.

Mum and Dad finally went to the doctors last February to discuss her memory decline, and then the first lockdown happened. Further testing was put on hold until the start of November. I received the news today that Mum has been diagnosed with early onset Alzheimers.

Thank you for reading all of this, I really appreciate it. Please let me know if you have any advice on coping strategies during this time.
Thank you for posting, you will find a lot of support here.
Although you suspected your mums condition, this confirmation diagnosis is a shock to everyone and I am so sorry you are struggling with your mental health.
Could your CBT therapist recommend a therapist who can help you?
If not, it is relatively straightforward to track down a qualified, registered therapist through their professional association.
Coping strategies are usually around the anxiety and grief that comes with this.
I do hope you can get professional support.
Warmest Kindred.
 
Last edited by a moderator:

Sarasa

Volunteer Host
Apr 13, 2018
2,556
0
Hi @Gayle_23 , and welcome to Dementia Talking Point. You'll find this a very supportive community and you'll get loads of help and advice here.
I'm sure others with more direct experience of early onset Alzheimer's will be along shortly, but in the meantime have you got all the financial things sorted? If you haven't already sorted out Lasting Power of Attorney now is the time to do so. This fact sheet outlines the benefits you can apply for, which may help as things progress.
In the mean time look after you as my own dear mother in law would say. Your own health is as important as your mothers.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,703
0
Kent
Hello @Gayle_23

I`m so sorry your family is having to deal with dementia at such a young age.

The main coping strategy I can think of is for you, your sisters and your dad to work together as much as possible to support your mum.

I hope there will be something in the following factsheet which will help you all;


Please continue to seek support from the forum. There is a wealth of experience here which so many are willing to share.
 

Jane11

New member
Jan 27, 2021
7
0
Hi @Gayle_23 sorry to hear about your mams diagnosis. My mam was 72 when she received hers and I was so upset even though I knew deep down. Keep talking to people and getting as much information as you can. I joined a support group which was good. Mind yourself too as it’s a tough time to take everything in.
 

canary

Registered User
Feb 25, 2014
14,667
0
South coast
The time around diagnosis is usually overwhelming. Even though you know deep down, having it confirmed cuts out the possibility and the hope that you are wrong. What you are feeling is almost certainly anticipatory grief - you are grieving for the mum you knew and for the loss of your dreams of the future. She is here and yet she is not. It is ambiguous.

Many counsellors have not been trained in anticipatory grief and do not understand what it is like for carers. Choose your counsellor carefully. I had a breakdown just over a year ago and the counsellor I first went to had no idea what caring was like. Fortunately I had another who was recommended by our local carers support group. I dont know if there is a group like that near you? If so, please make contact.

We can also help support you and offer advice for the myriad of problems and questions that you will undoubtably have, so please continue reading these forums and post about any problems you may have - even if its just to have a rant!
 

nita

Registered User
Dec 30, 2011
2,058
0
Essex
I too would second as @canary says - a local carer support group. I realised too late in my Mum's diagnosis that I could have talked to the organiser of the local Carers' hub who was someone with experience of dementia. In our town they are part of an organisation of local voluntary groups.

There are also local Alzheimer's Society groups for carers of/and those with dementia.

In about the second year of my mother's diagnosis, she took a marked downturn and I was feeling extremely anxious. Our carers' hub also offered a counselling service although this was a more general service for carers of people with all conditions.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,853
0
Yorkshire
hello @Gayle_23
a warm welcome from me too

some of your feelings may be around anticipatory grief, this may ecplain more

and this may help you with how to approach your mum and begin to grasp how things may be for her
 

Arty-girl

Registered User
Jun 29, 2020
27
0
Hi everyone,

I had considered joining Talking Point last year, however I felt uncomfortable sharing my experience about Mums memory without a diagnosis. Getting to a diagnosis has been a struggle for my siblings, Dad, Mum and I.

I was 19 when our family started to notice changes to Mums memory, and I am now 26. The events leading up to a diagnosis has had a big impact on my mental health, and I don't know how to get help to cope with my emotions. I am currently doing a second round of Cognitive Behavioral Therapy, however the therapist told me that he cannot assist me with coping with Mums memory.

The details below are lengthy (apologies in advance).

We began to notice changes in Mums personality after she experienced a couple of years of unemployment. We noticed that she would ask the same questions regularly, she would sit alone to colour/do crossword puzzles a lot, and financial issues arose which she refused to talk about until it got serious.

My sisters and I voiced our concerns to our Dad repeatedly and he kept reassuring us that we had nothing to worry about, and that Mum believed menopause/an incorrect prescription dose had caused the memory decline up to that point. As time went on, Dad began to ask us not to speak to Mum about our concerns and to be patient with her when she repeated herself.

In 2018, Dad spoke to Mum for the first time directly about her memory decline, and that she should see a doctor. Mum could not admit to herself or to Dad that there was anything wrong with her memory. So, my sisters and I kept nagging Dad to reason with Mum again or could we try voicing our concerns to her as well. Dad chose to share our feelings with Mum, rather than letting us do so.

Mum and Dad finally went to the doctors last February to discuss her memory decline, and then the first lockdown happened. Further testing was put on hold until the start of November. I received the news today that Mum has been diagnosed with early onset Alzheimers.

Thank you for reading all of this, I really appreciate it. Please let me know if you have any advice on coping strategies during this time.
Hi Gayle_23
My mom also feels she is absolutely fine so when she got the diagnosis of Alzheimers, I had asked the memory clinic to deal with me as mum would have difficulty in accepting the diagnosis. I have never mentioned the words dementia or alzheimers to her. I only refer to memory loss due to her age (she is 90 now). This all happened during first lockdown so I'm still on the learning curve. This forum is great for getting help and also for realising that what's happening to one person is happening to many others so you don't feel alone. I can also recommend looking at YouTube videos of Teepa Snow who is an expert is dealing with various things to do with dementia and she can explain them in a easily understandable way. Just put Teepa Snow in YT search bar. Also, get all the help you can from Social Services. I wished I had started to do that early last year and it's all taking some time now and make sure that all family members help in some way. Good luck and don't be afraid to talk to anyone on here.
 

embem123

New member
Feb 9, 2021
1
0
Hi @Gayle_23 .
Sorry I know I'm a bit late to be posting on this but I only just saw it.
So sorry to hear about your situation. It breaks my heart hearing other stories like this. You situation mirrors my families situation nearly exactly with the ages and the gradual decline (unemployment, puzzles etc). Also with mums denial, and the difficulty accepting it as Alzheimers, Dad taking much longer to see the problem. My sisters and I actually called it "the big A" around the time of diagnosis - we couldn't even say the word it was so overwhelming.
We are now 10 years down the line from where you are at, and mum is in a care home. I can't sugar-coat it, it's been a very tough 10 years. Alzheimer's is so isolating. You're losing a parent and gaining someone that needs constant care, which often people don't quite get.
What has helped me is reaching out and knowing I am not alone. I've got involved in campaigning and sharing my story via various Alzheimer's charities and that really helps.
The other posts on here suggesting local support groups are a good one and some advice I think I will take up myself. 10 years later and I still need support.
I also agree with other posts that some counsellors are better than others at this stuff. But on the whole counselling is good.
Anyway I hope you don't mind me posting . Your post just really reminded me of 10 years ago and how scary it all was.
So my advice is - Cut yourself some slack; don't expect to deal with this perfectly; give your family support but not at the sacrifice of your own life. Talk to friends honestly and let them in. People can be more understanding than you think. Try to find people in a similar situation. Just know you are not alone.
Good luck.
Xxx
 

Arty-girl

Registered User
Jun 29, 2020
27
0
Hi @Gayle_23 .
Sorry I know I'm a bit late to be posting on this but I only just saw it.
So sorry to hear about your situation. It breaks my heart hearing other stories like this. You situation mirrors my families situation nearly exactly with the ages and the gradual decline (unemployment, puzzles etc). Also with mums denial, and the difficulty accepting it as Alzheimers, Dad taking much longer to see the problem. My sisters and I actually called it "the big A" around the time of diagnosis - we couldn't even say the word it was so overwhelming.
We are now 10 years down the line from where you are at, and mum is in a care home. I can't sugar-coat it, it's been a very tough 10 years. Alzheimer's is so isolating. You're losing a parent and gaining someone that needs constant care, which often people don't quite get.
What has helped me is reaching out and knowing I am not alone. I've got involved in campaigning and sharing my story via various Alzheimer's charities and that really helps.
The other posts on here suggesting local support groups are a good one and some advice I think I will take up myself. 10 years later and I still need support.
I also agree with other posts that some counsellors are better than others at this stuff. But on the whole counselling is good.
Anyway I hope you don't mind me posting . Your post just really reminded me of 10 years ago and how scary it all was.
So my advice is - Cut yourself some slack; don't expect to deal with this perfectly; give your family support but not at the sacrifice of your own life. Talk to friends honestly and let them in. People can be more understanding than you think. Try to find people in a similar situation. Just know you are not alone.
Good luck.
Xxx
Thank you for that Embem 123. I think at least 5 days out of 7 I feel so guilty. Mainly because I only get around 4-5 hours sleep per night so I get tired early on in the evening and that's when my patience is low.
 

Everest1969

Registered User
Jan 9, 2021
27
0
@Gayle_23 So sorry to read your story. My parents are much older, but I am at the beginning of the dementia journey with them. At the moment the stress seems relentless and I have been looking around for some counselling to help. I haven't signed up for any yet, but today came across a type of therapy that is called 'solution focussed therapy'. This appeals to me, as from what I understand it is forward looking, rather than delving in the past. I am a very solution oriented person and so this appeals. Has anyone heard or experienced this before? or is trying to find a 'solution' setting up for a fail? Most of the therapists local to me, only mention experience in dealing with previous trauma etc. only one mentioned old age and caring responsibilities, so I agree that it is important to find one that is able to help with the particular challenges this awful disease brings.

You are definitely not alone here. x
 

kindred

Registered User
Apr 8, 2018
2,578
0
@Gayle_23 So sorry to read your story. My parents are much older, but I am at the beginning of the dementia journey with them. At the moment the stress seems relentless and I have been looking around for some counselling to help. I haven't signed up for any yet, but today came across a type of therapy that is called 'solution focussed therapy'. This appeals to me, as from what I understand it is forward looking, rather than delving in the past. I am a very solution oriented person and so this appeals. Has anyone heard or experienced this before? or is trying to find a 'solution' setting up for a fail? Most of the therapists local to me, only mention experience in dealing with previous trauma etc. only one mentioned old age and caring responsibilities, so I agree that it is important to find one that is able to help with the particular challenges this awful disease brings.

You are definitely not alone here. x
hello! just to say solution based therapy looks at the strengths you have and have used in the past in different situations and how they can be applied now.
It would seem to be a good fit for you! I do hope so. We all bring so many strengths to bear on this dreadful disease.
Warmest Kindredx
 
Last edited by a moderator:

Kaths

New member
Mar 2, 2021
7
0
Hi, I was 27 was my Mum had a huge stroke which left her with early-onset dementia, she recovered remarkably well from the stroke and did really well dealing with her dementia and lived fairly independently with my support for a few years. Lockdown has had a dramatic effect on her dementia, she has gotten much, much worse. She was/is a supportive Mum and we're friends as well as family. It is hard for people to understand that a person with dementia changes, the relationship you have with them changes. It took me a while to understand I was grieving for the person she was, that person is gone. She still has her humour, kindness and love in abundance but she isn't the same. Hopefully, that makes some sense without sounding doom and gloom, we've had plenty of laughs along the way. Take care.
 

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