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Start of a journey we don't want to be on

Mrs Moz

New member
Nov 28, 2021
4
0
Hi I'm new here and today isn't a good day. At the age of 54 my darling husband got the diagnosis of early-onset Alzheimer's this week, although we suspected this was the case I still feel like I've been hit by a train. I've been concerned about my husband for a few years but he would not accept that anything was wrong, we did go to the GP a few years ago but at the time he said he wasn't too concerned and my husband would not pursue the matter. It was due to an issue at work at the start of this year that finally persuaded him to go the the doctor which resulted in a referral to the memory clinic, MRI scan and cognitive tests. Thankfully we have made LPA's and updated our wills but I feel completely overwhelmed and confused, I just don't know what to do now, how do others deal with the uncertainty of living with Alzheimer's?
I'm so flipping angry, we love travelling but this definitely isn't a journey we want to be on!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
75,006
0
Kent
My heart goes out to you @Mrs Moz

Any diagnosis is devastating but one at such a young age is soul destroying. Anger is the most natural reaction and I doubt there would be anyone who wouldn’t understand.

Saying this I can only hope this community will help you and give you some of the support you need.

You asked how we have dealt with the uncertainty of living with Alzheimer’s. For my part I didn’t think of anything further than the task in hand for each day There is no way of predicting how the dementia will develop. Some people experience a slow progression while with others it is more rapid.

Aiming to plan for the future apart from trying to get financial and legal administration out of the way is a waste of precious energy. If you possibly can, take each day as it comes.

I would like to welcome you to this forum. I’m sure you would choose not to be here either but I assure you you are in good company
 

sirpandip

Registered User
Nov 10, 2021
11
0
Hi I'm new here and today isn't a good day. At the age of 54 my darling husband got the diagnosis of early-onset Alzheimer's this week, although we suspected this was the case I still feel like I've been hit by a train. I've been concerned about my husband for a few years but he would not accept that anything was wrong, we did go to the GP a few years ago but at the time he said he wasn't too concerned and my husband would not pursue the matter. It was due to an issue at work at the start of this year that finally persuaded him to go the the doctor which resulted in a referral to the memory clinic, MRI scan and cognitive tests. Thankfully we have made LPA's and updated our wills but I feel completely overwhelmed and confused, I just don't know what to do now, how do others deal with the uncertainty of living with Alzheimer's?
I'm so flipping angry, we love travelling but this definitely isn't a journey we want to be on!
 

Thethirdmrsc

Registered User
Apr 4, 2018
563
0
Hi @Mrs Moz I am sorry, but this is a journey that no one wants to be on. At least you have all the legal stuff done. I don’t know where in the country you are, but I know that in Scotland you do get a support worker for the first 12 months, which can be a help. Read as much as you can on this site, and talk to each other, and your family. We didn’t do that, and I wish we had.
 

RosettaT

Registered User
Sep 9, 2018
697
0
Mid Lincs
Welcome @Mrs Moz. I sorry to hear your news.
It certainly hits you between the eyes. I remember knowing in my heart it was Alzheimer's and praying it was something else that was treatable. Anger and resentment are common feelings, I felt that way too. I also hit depression but woke up one morning determined that I wasn't going to allow it to make me bitter or angry any longer.
You'll find lot of information here & many, many knowledgeable people who understand what you are going through. As far the condition goes I found it easier not to think too far into future, all cases are different and it may be a long time before you notice a serious deterioration. Please don't be afraid to ask about anything.
 

Sasperilla

Registered User
Aug 17, 2020
10
0
Hi @Mrs Moz I am sorry, but this is a journey that no one wants to be on. At least you have all the legal stuff done. I don’t know where in the country you are, but I know that in Scotland you do get a support worker for the first 12 months, which can be a help. Read as much as you can on this site, and talk to each other, and your family. We didn’t do that, and I wish we had.
So sorry to hear this. No wonder you feel angry. You must feel very cheated. No advice, I’m afraid but just qbtwHello @Thethirdmrsc can
Hi I'm new here and today isn't a good day. At the age of 54 my darling husband got the diagnosis of early-onset Alzheimer's this week, although we suspected this was the case I still feel like I've been hit by a train. I've been concerned about my husband for a few years but he would not accept that anything was wrong, we did go to the GP a few years ago but at the time he said he wasn't too concerned and my husband would not pursue the matter. It was due to an issue at work at the start of this year that finally persuaded him to go the the doctor which resulted in a referral to the memory clinic, MRI scan and cognitive tests. Thankfully we have made LPA's and updated our wills but I feel completely overwhelmed and confused, I just don't know what to do now, how do others deal with the uncertainty of living with Alzheimer's?
I'm so flipping angry, we love travelling but this definitely isn't a journey we want to be on!
So sorry @MrsMoz. It’s a devastating diagnosis but especially in someone so young. I don’t really have any advice, other than let yourself feel the emotions but try to look after yourself. I know it’s hard but getting out, getting rest and eating well will help you cope.
 

Annier68

New member
Oct 9, 2021
7
0
I’m in the same position. My husband is 52. Diagnosed last week. We are talking with our children, both under 12, about it tomorrow. Really don’t know what I’m going to say. All my love and look after yourself too.xx
 

marionq

Registered User
Apr 24, 2013
6,451
0
Scotland
It is brutal in people so young. The only positive is that you now have an explanation for some of the changes and behaviours which I’m sure have been going on. As far as travelling is concerned I would be inclined to be more adventurous within the British Isles as going abroad creates another level of problem. My husband and I always travelled. In fact any spare money went on that. With Alzheimer’s, problems arose which meant I was constantly on alert so the stress cancelled out the pleasure. Avoiding airports and unnecessary long journeys helped a bit. I also kept holiday short ie a week at most.
 

Mrs Moz

New member
Nov 28, 2021
4
0
I’m in the same position. My husband is 52. Diagnosed last week. We are talking with our children, both under 12, about it tomorrow. Really don’t know what I’m going to say. All my love and look after yourself too.xx
Hi Annier68 I'm so sorry to hear that you are in the same position with such young children, fortunately our son is 28. But as he still lives at home I almost wish he would move out,I really don't want him to be here to watch his father deteriorate.
 

Mrs Moz

New member
Nov 28, 2021
4
0
Thank you all for the kind words and making me feel so welcome. I've decided to do a charity parachute jump next year, firstly it's something to look forward to and also if I can raise some money I'll feel like I'm doing something positive. I know it's early days but I will be strong and I will be able to deal with this, that's what I tell myself every morning when I look in the mirror.
 

rayw

New member
Dec 8, 2021
6
0
Hi I'm new here and today isn't a good day. At the age of 54 my darling husband got the diagnosis of early-onset Alzheimer's this week, although we suspected this was the case I still feel like I've been hit by a train. I've been concerned about my husband for a few years but he would not accept that anything was wrong, we did go to the GP a few years ago but at the time he said he wasn't too concerned and my husband would not pursue the matter. It was due to an issue at work at the start of this year that finally persuaded him to go the the doctor which resulted in a referral to the memory clinic, MRI scan and cognitive tests. Thankfully we have made LPA's and updated our wills but I feel completely overwhelmed and confused, I just don't know what to do now, how do others deal with the uncertainty of living with Alzheimer's?
I'm so flipping angry, we love travelling but this definitely isn't a journey we want to be on!
 

rayw

New member
Dec 8, 2021
6
0
Hello Mrs Moz
I have just joined, so sorry about your husband, I feel similar to you, but the 3 years since My wife Maggie had the tests etc... the last few months we have a better daily life, I am still learning,, hoping that joining this site will help!!!!!
We have been together 57 years she is the love of my life.

4 years ago she went through a staying in bed situation lasting many months. my thoughts are now she had a nervous breakdown,, like her Dad.
She remembers the long period when she was young 11/12 helping her Mom to save the family.
She has great memory going back 70 odd years, so we use our times with great insight.

Please Remember feel good, take each day, as maybe your last good day.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
75,006
0
Kent
Welcome to Dementia Talking Point @rayw I hope you will get the support you need

Please start your own Thread in the forum I have a partner with dementia


This way all your support will be in one place and easier to access.
 

Mrs Moz

New member
Nov 28, 2021
4
0
Hello Mrs Moz
I have just joined, so sorry about your husband, I feel similar to you, but the 3 years since My wife Maggie had the tests etc... the last few months we have a better daily life, I am still learning,, hoping that joining this site will help!!!!!
We have been together 57 years she is the love of my life.

4 years ago she went through a staying in bed situation lasting many months. my thoughts are now she had a nervous breakdown,, like her Dad.
She remembers the long period when she was young 11/12 helping her Mom to save the family.
She has great memory going back 70 odd years, so we use our times with great insight.

Please Remember feel good, take each day, as maybe your last good day.
Hi rayw
I am so sorry to hear about your wife. Like you my husband is the love of my life and my soulmate, we've know each other since we were 13, married at 21. It breaks my heart to watch the man I love changing in front of my eyes and we are trying to make the best of everyday, enjoying the things we love whilst we can.
 

rayw

New member
Dec 8, 2021
6
0
Hi rayw
I am so sorry to hear about your wife. Like you my husband is the love of my life and my soulmate, we've know each other since we were 13, married at 21. It breaks my heart to watch the man I love changing in front of my eyes and we are trying to make the best of everyday, enjoying the things we love whilst we can.
Hi Mrs Moz
I met Maggie who is Irish in London she worked in a little restaurant near GOSH where I was working, in on the 1964 new Inst.Child Health. A coffee one afternoon changed our lives, Love at first sight for Me. 57 Years together, 56 married. 50 wonderful years,, tears,, joy.. 3 great children 6 lovely grand children. her girls are her Love and she does miss them, 2 at Uni and 2 living 3 miles away. they come when they can...
I too have a broken heart each time she has a change of character. Like you I try to be as normal as I can, enjoying our time.
 

Xhanlbxx

New member
Aug 31, 2019
5
0
Hi I'm new here and today isn't a good day. At the age of 54 my darling husband got the diagnosis of early-onset Alzheimer's this week, although we suspected this was the case I still feel like I've been hit by a train. I've been concerned about my husband for a few years but he would not accept that anything was wrong, we did go to the GP a few years ago but at the time he said he wasn't too concerned and my husband would not pursue the matter. It was due to an issue at work at the start of this year that finally persuaded him to go the the doctor which resulted in a referral to the memory clinic, MRI scan and cognitive tests. Thankfully we have made LPA's and updated our wills but I feel completely overwhelmed and confused, I just don't know what to do now, how do others deal with the uncertainty of living with Alzheimer's?
I'm so flipping angry, we love travelling but this definitely isn't a journey we want to be on!
Hi there ,

My thoughts really go out to your family at this time as the initial diagnosis is a very scary time and like you said you feel like your whole world has fell apart.

My dad was diagnosed with Alzheimer’s disease in November 2018 at the age of 57 . I did not know anything about this disease and I just ultimately felt like my life was falling apart and the grief was like none other.

My advice would be to organise all the legal POA’s , entitlement to social care while you don’t need it because if it’s left they honestly make you jump through hoops . My mom did not register with social as she coped with my dad herself the past few years and when it got to much she had already slipped through the net, so please look into this and get your family on the radar asap.

Another thing I would say is if you enjoy travelling do it now , live for the now and make them memories because you never know when you will be limited to do this with your loved one .

We travelled to New York before the pandemic in 2019 and start of 2020 and made sure dad saw all this but now he would not be able to do this so it’s so important you make most of the time.

I wish I could say it is an easy journey but with each ‘new norm ‘ there is a stage of grief but also there are amazing memories , the one thing that I hold on to with my dad is his sense of humour - he is still laughing now through everything .

Sending my thoughts to you x
 

Takemeawayfromthis

New member
Nov 8, 2021
1
0
Hi - I too am in the same position - my husband was diagnosed in October last year at the age of 55. I too knew deep down but it wasn't until problems arose at work that he accepted there was anything wrong. Since then we have had lots of support, the most useful was from Onside Advocacy - they hold regular meeting with sufferers and their families every month and they also provide 5 free hours a month for 6 months of one to one support. This involves a mentor accompanying him out (wherever he chooses). At the moment we are coping, we even went abroad for 2 weeks before Christmas, and although all the organising etc was left to me we actually had a lovely holiday. Talked a lot about the past, children, grandchild etc. I am under no illusions that things are going to get worse, but for now I am trying to follow the advice given to me by the consultant at the time of diagnosis and that was "don't look too far into the future".
 

Sarasa

Volunteer Host
Apr 13, 2018
4,179
0
Hi @Takemeawayfromthis , a warm welcome to Dementia Talking Point. You'll find this a very friendly and supportive place. I'm sorry it was your husband's diagnosis at such a young age that bought you here.
I'd not heard of Onside Advocacy, and looking it up it appears that it is only in Herefordshire and Worcestershire at the moment, which is a bit of a shame as it sounds good and you are obviously finding it really useful.
You might want to start your own thread on this forum or on the I have a partner with dementia forum. I find having a thread that I use as a diary very useful.