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Found out Monday partner has dementia!

Ipswich

Registered User
Jul 5, 2014
15
I don't know what to do - I feel I should be strong and supportive but all I keep doing is bursting into tears. He is only 56. I feel totally useless - I don't know what to do or what to say, probably because there is nothing I can say or do to change anything. Even this e-mail seems wrong because it's all about me so far and I know that although I am scared witless, it must be so much worse for him. Is there anyone out there who can help me take control so I can try to help him through this rather than be the blubbering mess I am right now?
 

Owly

Registered User
Jun 6, 2011
538
Hey, take a deep breath......in.......and out.....

It's an awful shock, but you have come to the right place for some help and understanding.

I don't have experience of a younger person with dementia (only my Mum who is 85) but there will be people on this site who will come along and help and advise you.

The only thing that can be said with certainty about dementia is that it's different for everybody. Everybody. So anything you read on here, about how it's going to progress, is just other people's experiences. Don't go too far into the future, try to live in today and deal with the problems your partner's dementia is throwing up today. Some dementias progress very slowly and you can have an almost normal life for a very long time. An important thing is to consider, "what can he still do?" and "what can we still do together?" and focus on those things.

If you have more specific worries, or day-to-day problems that you need advice for, then please talk about them because someone on this site will have been there already, and you will get helped.

:)
 

Noorza

Registered User
Jun 8, 2012
6,542
I don't know what to do - I feel I should be strong and supportive but all I keep doing is bursting into tears. He is only 56. I feel totally useless - I don't know what to do or what to say, probably because there is nothing I can say or do to change anything. Even this e-mail seems wrong because it's all about me so far and I know that although I am scared witless, it must be so much worse for him. Is there anyone out there who can help me take control so I can try to help him through this rather than be the blubbering mess I am right now?
You are in shock, it is alright to be in shock. You need to look after him, in order to do that you have to look after you. So if this post is all about "me" that's fine as it is you who will be caring for your husband so it is about both of you, if that makes sense.

Allow yourself to be a blubbering mess for now, this is a long journey that will probably last for many years, this is a few days in. If you want to cry, then cry. When my much loved Dad was taken far too soon, the doctor told me that crying was the bodies safety valve. Let them flow.

Then there will be many kind people on here who will albeit virtually hold your hand, and give loads of practical advice as you learn to live with dementia.

Not today but when you feel ready I would focus on the posters on here who learn to live with dementia and not suffer from it. There are many who have a full and rewarding life for many years after the diagnosis of dementia.
 

Wolfsgirl

Registered User
Oct 18, 2012
1,028
Nr Heathrow, Mum has AD & VD
I am so glad you found Talking Point as you will learn lots and get tons of support too.

Do you know what kind of dementia he has? Mostly I think nothing suddenly happens so whatever he has been like will probably continue at the same rate. This is early days and I understand you must be in a dreadful panic. Nothing is going to happen over night and I trust you will have time to consider what support you have available to you as in friends and family.

Read all the posts you can to gain information.

Best wishes to you it must be so hard with him being so young x


I don't know what to do - I feel I should be strong and supportive but all I keep doing is bursting into tears. He is only 56. I feel totally useless - I don't know what to do or what to say, probably because there is nothing I can say or do to change anything. Even this e-mail seems wrong because it's all about me so far and I know that although I am scared witless, it must be so much worse for him. Is there anyone out there who can help me take control so I can try to help him through this rather than be the blubbering mess I am right now?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,144
Kent
Hello Ipswich

It is terrible news your partner has dementia and it is just as terrible for you because your life will never be the same again. So please don't feel selfish, it's about both of you.

I hope you'll find help and support here which will enable you to live with this devastating news as well as you are able.

It might help you to read the fact sheet After a diagnosis.


http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=122
 
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Beate

Registered User
May 21, 2014
11,958
London
Welcome to Talking Point.

You're grieving - it's perfectly normal so don't feel bad about it. Your life will change hugely too so don't ever feel like you are not entitled to your emotions.

It's going to be tough, both emotionally and practically, so if ever you feel the need to talk, ask questions or just vent, please don't hesitate to come here and unburden yourself.

I don't know what advice you have been given at time of diagnosis but try and read the factsheets as much as you can, get in touch with AS and Age UK or whoever else might be able to give you help or advice. Find out whether your partner gets all the benefits he deserves and explore Council Tax reduction and Attendance Allowance. Get in touch with Adult Social Services and see what's available in terms of carers, sitting service etc. as well as telecare. Telecare is equipment like tracker devices, alarm sensors or memory devices. Get in touch with The Carers Centre and find out about events like coffee mornings or carer forums plus let them put you on their database for their newsletter. Think about him making a will and Lasting Power of Attorney (financial and health) while your partner still has the capacity to do so.

And above all, if you get overwhelmed, come here and have a natter.

Your partner is still relatively young and can still have many good years so try to live in the moment and don't be scared about what might be. If you've seen one person with dementia, you've seen one person with dementia. Everyone is different.
 

jellyfish

Registered User
Apr 30, 2014
182
West Midlands
Hello Ipswich, I'm so sorry to hear of your husband's diagnosis. In time you should reach a state of acceptance but it's a difficult journey to get to this point. My husband was diagnosed aged 48 (53 now) and I made a conscious decision that we should make the most of each day and not worry too much about tomorrow. Everyone's journey is different.

You'll need to look at the financial side of things and I'm sure others will be along to offer guidance in respect of this.

I hope you find TP as helpful as I have and there are many kind and knowledgeable members on this forum. Kindest wishes xxx
 
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Annie_M

Registered User
Jun 30, 2014
35
South Wales
Me too!

Hi Ipswich, I'm in a similar situation to you. I'm 54, my husband is a young 67, and has Vascular Dementia following a stroke and TIAs. We got our diagnosis last week. I totally empathise with your sense of shock, even though the diagnosis came as no surprise to me because of his illness, I felt cheated of the future together we had planned. It's ok to feel angry and selfish because dementia has become 'your illness' too, but there are ways to manage it as the previous posters on here have indicated. I'm new to the forum too :) I love it that I can post on here and people will know how I feel, I can vent my frustrations and feel I'm not alone, that other carers are having problems that I can understand or feel I can help with.
It is very scary, have a good cry, share your feelings, get to a carer's project in your area. I found an excellent counsellor in mine.
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
Wolfsgirl is right. Nothing will change immediately. The only thing that's different now to before Monday is that now you know. Please don't take this the wrong way, but one thing we need to be careful of in the early days after diagnosis, is to let that diagnosis colour our view of everything the person does - "Is that the dementia?" - when in reality it may just be a spontaneous gesture or a passing mood, the same as we all get!

You do need to be kind and gentle with yourself and your partner for a while - a sort of "airbag" if you like, to cushion the diagnosis. A few treats, and nice times now to sustain you. There will be a new normality, and you will settle into it. Blessings to you.
 

Scarlett123

Registered User
Apr 30, 2013
3,802
Essex
Hi Ipswich, and a warm welcome from me too. I'm so sorry that circumstances have brought you here, but there is no better place to get support than from the lovely people on Talking Point. :)

We're all at different stages of caring for our partners, but we are all united in trying to do the very best we can. Because we're the ones who are doing the caring and supporting, it's natural that our feelings, and fears, are going to be in the forefront of our minds, and this is the place to ask questions, and vent any frustrations and anger.

I've recently posted to another person who was crying, that my old aunt used to say "God makes tears to wash away sorrow", and believe me, if all the cry-filled tissues from members of Talking Point were laid end to end, they'd prob ably stretch to the moon and back.

No one will judge you here. No one will say "pull yourself together". When you're ready, let us know how things are going. It is such a young age to be diagnosed, and my heart goes out to you.
 

Noorza

Registered User
Jun 8, 2012
6,542
I don't know what to do - I feel I should be strong and supportive but all I keep doing is bursting into tears. He is only 56. I feel totally useless - I don't know what to do or what to say, probably because there is nothing I can say or do to change anything. Even this e-mail seems wrong because it's all about me so far and I know that although I am scared witless, it must be so much worse for him. Is there anyone out there who can help me take control so I can try to help him through this rather than be the blubbering mess I am right now?

There are many threads which inspire me, but this is one of my favourites.

http://forum.alzheimers.org.uk/showthread.php?36598-Update-on-Bill.&p=957790#post957790

It is a wonderful example of how to live with dementia after the diagnosis and to show how life still goes on. I would thoroughly recommend a view of it, the pictures are delightful.

Some suffer with dementia (my mum is in that bracket sadly) there are others who live with it. Let the tears flow, it is all part of it, but take inspiration from those who lead by such a wonderful example.
 

LYN T

Registered User
Aug 30, 2012
6,960
Brixham Devon
I had to respond even though all of the previous posters have said everything I would of!

I can still remember the initial feelings of shock, fear and grief. I couldn't stop crying either-tears are a good thing-a release valve. If possible discuss with your partner financial issues such as power of attorney and making wills if you haven't already. No rush do it in your own time. You will need support. Do you have any family or close friends to talk to? Do you have any input from a social worker or CPN?

Don't isolate yourself and think that you have to soldier on alone. Please post again to let us know how you are.

Take care

Lyn T
 

Jinx

Registered User
Mar 13, 2014
2,333
Pontypool
Hello Ipswich, nothing to add really only to say that when my husband was diagnosed I was close to tears for weeks but that was 6 months ago and he hasn't deteriorated much, some days worse than others. Heed what others have said about not looking too deeply into what might be in store. Give yourself some time to come to terms with this and please kept coming back to TP. It's addictive anyway!! x


Sent from my iPhone using Talking Point
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,930
England
Hi and welcome to TP. A diagnosis is a shock, an earth shattering one, feels like the future has been torn away. We have all felt this way, I know I did. My husband was 62 and I was a few months off retiring. The plans we had, me spending time seeing friends and doing my own thing until my husband retired two years later when we would put into action all the things we had planned and saved for. Non of this was now going to happen.

Well after the shock, getting everything sorted, LPA etc. I realised we were still the same. My husband was going to work and I was seeing my friends. The travelling we planned for when he retired we brought forward and enjoyed cruising several times, long weekends in some of the beautiful capitals around the world and some lovely touring holidays in Southern Ireland. We also had weeks away staying with my brother in Ireland. My husband continued to work for a 4 years after his diagnosis with help from colleagues and a notebook in every pocket.

Sometimes it was difficult but not impossible and life was good if a little chaotic at times. For us it was to take life one day at a time, enjoy the good ones and tolerate the not so good ones.

It won't be easy, but you will find so much support and help on the forum from those who know what you are going through. Whether you want advice or just a chat please use the forum. Hope to see you joining in soon,

Take care Jay
 

bilslin

Registered User
Jan 17, 2014
762
hertforshire
Hi Ipswich and welcome to TP. Can't say anymore than what the other TPers have said. So just going to send you a hug, you sound like you could do with one.when your ready and need help or advice we'll be here for you. You have a good cry and let it out. lindax
 

kayze

Registered User
Jan 20, 2014
166
Hi,
Welcome to talking point.
My husband also has early onset dementia, it does come as a shock when you get a diagnosis, but I felt relieved there was finally an answer to the behaviour he was showing.

The hardest part for me was trying to explain to my children what was wrong with their dad. We try to take one day at a time, and if I need someone to talk to I can come
here.

Best wishes.
 

Ipswich

Registered User
Jul 5, 2014
15
Hi Ipswich, I'm in a similar situation to you. I'm 54, my husband is a young 67, and has Vascular Dementia following a stroke and TIAs. We got our diagnosis last week. I totally empathise with your sense of shock, even though the diagnosis came as no surprise to me because of his illness, I felt cheated of the future together we had planned. It's ok to feel angry and selfish because dementia has become 'your illness' too, but there are ways to manage it as the previous posters on here have indicated. I'm new to the forum too :) I love it that I can post on here and people will know how I feel, I can vent my frustrations and feel I'm not alone, that other carers are having problems that I can understand or feel I can help with.
It is very scary, have a good cry, share your feelings, get to a carer's project in your area. I found an excellent counsellor in mine.
Hello Annie_M. What a relief! I was feeling really selfish because I was feeling cheated and angry that all our plans for the future were going to have to change. Just reading that you felt like this too made feel better and that I was not a completely bad person. I am really scared and I am going to follow your advise and find a local carer's project so I can begin to manage my fears. Thank you and a big thank you to everyone else who responded with kind words and advise to my post.
 

Trisha4

Registered User
Jan 16, 2014
2,440
Yorkshire
I don't know what to do - I feel I should be strong and supportive but all I keep doing is bursting into tears. He is only 56. I feel totally useless - I don't know what to do or what to say, probably because there is nothing I can say or do to change anything. Even this e-mail seems wrong because it's all about me so far and I know that although I am scared witless, it must be so much worse for him. Is there anyone out there who can help me take control so I can try to help him through this rather than be the blubbering mess I am right now?
It has all been said but I thought I would add my voice. Firstly, understanding. I felt just as you describe when my husband was diagnosed with Alzheimer's last year. My first post on here was made at 2 o clock one morning when I felt desperate and alone and frightened and cheated. I was overwhelmed by the responses and support I received.
Secondly, hope. This year we have been to Panama, the Greek Islands, away with friends in UK and we are about to go off for 5 weeks to mainland Europe in our motorhome. All organisation etc is down to me and sometimes I feel overwhelmed but we are still enjoying life together.
I hate that he has this disease. I hate that I must take the role of carer. I fear for the future. BUT while we can enjoy life together I will look for strategies and support to help us. One of my mantras is not to spoil today worrying about tomorrow. Of course, it doesn't always happen but it does most of the time.
Thirdly, what makes you feel more able to cope. I feel empowered by knowledge and action so I felt better doing practical things. Lasting power of attorney ASAP is essential in my opinion, apply for any benefits he is entitled to. I went on a 2 day CrISP course for carers of people living with dementia which I found really helpful. Another thing I try to do is make any situation or task easier if I can.
Lastly, all I can offer is my best wishes and my friendship on here as we go on our separate journeys at the same time.
 

Annie_M

Registered User
Jun 30, 2014
35
South Wales
It has all been said but I thought I would add my voice. Firstly, understanding. I felt just as you describe when my husband was diagnosed with Alzheimer's last year. My first post on here was made at 2 o clock one morning when I felt desperate and alone and frightened and cheated. I was overwhelmed by the responses and support I received.
Secondly, hope. This year we have been to Panama, the Greek Islands, away with friends in UK and we are about to go off for 5 weeks to mainland Europe in our motorhome. All organisation etc is down to me and sometimes I feel overwhelmed but we are still enjoying life together.
I hate that he has this disease. I hate that I must take the role of carer. I fear for the future. BUT while we can enjoy life together I will look for strategies and support to help us. One of my mantras is not to spoil today worrying about tomorrow. Of course, it doesn't always happen but it does most of the time.
Thirdly, what makes you feel more able to cope. I feel empowered by knowledge and action so I felt better doing practical things. Lasting power of attorney ASAP is essential in my opinion, apply for any benefits he is entitled to. I went on a 2 day CrISP course for carers of people living with dementia which I found really helpful. Another thing I try to do is make any situation or task easier if I can.
Lastly, all I can offer is my best wishes and my friendship on here as we go on our separate journeys at the same time.
Good advice Trisha, especially the doing things together while you can still communicate and appreciate it. After the stroke, OH and I went on a Caribbean cruise and to Florida, we visited my sister in California. I think my friends thought we'd won the lottery ;) or something because we spent money on things in the house to make life easier for me, wood floors and garden landscaping. We'd always saved for our retirement and 'rainy days' - well, it just poured so we did as much as we could. OH can't do holidays now, too unsettling for him, but we have a garden he can relax in and a de-cluttered house to make life easier to manage.

Here you will find people like you, Ipswich, so read as much as you can. Don't be despondent, we will help you through your difficulties as much as we can. :)
 

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