• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

I have dementia and I am scared

Fluffy one

Registered User
Oct 4, 2016
6
0
Hertfordshire
I am in a same sex relationship and we have been together for 12 years and married for 3 years this month.
I had a stroke about a year after we moved in together and have had poor health since. She has stood by me. Supports me physically. We have some adaptations to our home but financially it has an affect as we are living on one wage and my benefits.
My memory isn't too bad. I get my words mixed up and sometimes cant get the words out at all.
I love photography, spending time in the garden and pottering. I do some housework and love the computer.
I want to do as much as I can for as long as I can and I want to travel...........I want to do and try everything. But My wife doesn't want to do much at all. I understand she is tiered but I feel my life drifting away and time is running out.
 

Kevinl

Registered User
Aug 24, 2013
4,762
0
Salford
Hi Fluffy one, welcome to TP
Orientation (I think) isn't important at a time like this. For the record I'm not gay (never met the right man) but several of my friends are both men and women.
I'm sad to hear of your diagnosis I had a mother and now a wife both of whom had/have AZ, they both stayed in denial so in some way it was easier to deal with, I could just agree there was/is nothing wrong and carry on as if nothing was actually changing, although it was.
For you, now on from what you've said life is a sprint, for your wife it's a marathon.
Being diagnosed with AZ must be scary as hell, but I can assure you finding out you're a carer is pretty scary too both of you have so much uncertainty ahead.
Like everything in life it's a matter of compromise, I had to go part time, then work from home then stop work to look after my wife, it isn't easy. When I married her no one told me "love, honour and obey" included quitting work, living on benefits and changing her inco pads before I was 60 years old, they left that bit out.
You need to work together, set some mutually agreed goals and enjoy your time together as much as you can for as long as you can.
Keep posting
K
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,241
0
71
Dundee
Hi there.

I just wanted to say welcome to TP and I'm glad you found us.

I'm sorry about your diagnosis. I know it's not easy but have you told your wife how you feel about this? As Kevin says it's a matter of compromise.

Keep posting. It might help to keep sharing your feelings here.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
12,473
0
Yorkshire
Hi Fluffy one
a warm welcome from me too
it's good that you've found TP and so now have somewhere to come and get things off your chest
I wonder if your wife just needs a bit more time to get her head round the diagnosis - might she join TP too to have a mooch around and settle her mind a little

you sound like a couple who do talk, so let her know how you feel and what you're thinking - maybe you could think of the travelling you most want to do, a couple of places, and have a plan of how you could do it, not to pressure her, just to show that you're not expecting her to make all the arrangements, you're not expecting to go jet-setting every week and you're not intending to go round the world in 80 days

best wishes to you both
 

creativesarah

Registered User
Apr 22, 2010
9,635
0
East Hunsbury Northamptonshire
Hi
I too have a diagnosis and love doing all the things you do! I have no partner but live with friends in a shared house six years on I am still able to get out and about with my camera!
At first I felt like ut was a death sentence hanging over me but I found this saying which has helped me
'Don't curse the Darkness light a candle'
Here is one of my photos
Hope this helps
Sarah
 

Attachments

  • don't curse the darkness.jpg
    don't curse the darkness.jpg
    60.3 KB · Views: 799

Patricia Alice

Registered User
Mar 2, 2015
179
0
Hi Fluffy One,

I just wanted to say welcome. We are always here for you.

I don't have much to offer in the way of advice accept to say you need to sit down and discuss what you have always wanted to do and go for it and enjoy the things you still love to do.

Big hug xx
 

Fluffy one

Registered User
Oct 4, 2016
6
0
Hertfordshire
Thanks Kevin.

I am happy to understand more about her feelings and worries. I want this to be as kind to her as it can be. I am so scared of the homes as i see how people are treated


Hi Fluffy one, welcome to TP
Orientation (I think) isn't important at a time like this. For the record I'm not gay (never met the right man) but several of my friends are both men and women.
I'm sad to hear of your diagnosis I had a mother and now a wife both of whom had/have AZ, they both stayed in denial so in some way it was easier to deal with, I could just agree there was/is nothing wrong and carry on as if nothing was actually changing, although it was.
For you, now on from what you've said life is a sprint, for your wife it's a marathon.
Being diagnosed with AZ must be scary as hell, but I can assure you finding out you're a carer is pretty scary too both of you have so much uncertainty ahead.
Like everything in life it's a matter of compromise, I had to go part time, then work from home then stop work to look after my wife, it isn't easy. When I married her no one told me "love, honour and obey" included quitting work, living on benefits and changing her inco pads before I was 60 years old, they left that bit out.
You need to work together, set some mutually agreed goals and enjoy your time together as much as you can for as long as you can.
Keep posting
K
 

Fluffy one

Registered User
Oct 4, 2016
6
0
Hertfordshire
Thank you

Hi Sarah.
Thank you for your kind words of support. I love the quote too. I am also a keen photographer. but I cant get out alone due to needing a wheelchair for spinal problems and had a stroke. But when I can i love to use it. Even if it is just the birds in the garden. I wish you well.


Hi
I too have a diagnosis and love doing all the things you do! I have no partner but live with friends in a shared house six years on I am still able to get out and about with my camera!
At first I felt like ut was a death sentence hanging over me but I found this saying which has helped me
'Don't curse the Darkness light a candle'
Here is one of my photos
Hope this helps
Sarah
 

Fluffy one

Registered User
Oct 4, 2016
6
0
Hertfordshire
Hi

Thanks for the words of comfort and support. Ironically I forget to look on here!!!



Hi there.

I just wanted to say welcome to TP and I'm glad you found us.

I'm sorry about your diagnosis. I know it's not easy but have you told your wife how you feel about this? As Kevin says it's a matter of compromise.

Keep posting. It might help to keep sharing your feelings here.
 

tss502

Registered User
Oct 20, 2014
110
0
Hi there,

it may be that your wife is feeling overwhelmed with the care duties she now has. It's very easy to become exhausted if you feel that you need to pick up everything. Have you got any help at the moment other than your wife? From my experience as a carer it's worth getting all the help you can. Speak to your local Alzheimers Society - they may have volunteers through a scheme such as Side by Side. It could be that they could match you with someone who could take you out on a regular basis to do some of the things that you love, and give your partner a bit of a break. Also speak to Social Services and get a care plan in place which takes into account the needs for both of you. Don't underestimate that your wife will need a break and time to do things for herself as well - think about time out for her as well as time for you to both do things together. Think about whether it would help to have some of the routine chores taken away so you can enjoy more time together - for example, is it possible to get a cleaner in to help with the household tasks? I realise all of this can be difficult if you are on a tight budget but make sure you are claiming all the benefits you are entitled to, and for your wife as well; and that you are clear about what you are entitled to through social services.
 

Members online

No members online now.

Forum statistics

Threads
125,561
Messages
1,839,308
Members
76,501
Latest member
Jane Ellen