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coming to terms with Dementia

Rushdenboy

New member
Nov 17, 2020
9
I got my Diagnosis on the 2 November this year so not quite 2 weeks ago finding it hard to to come to terms with the fact that i have got it
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,253
69
Dundee
Welcome to the forum @Rushdenboy.

I’m so sorry to read of your diagnosis. It must indeed be terribly hard to come to terms with it. I’m glad you’ve found the forum and I know you will get lots of help and support here.

I’m wondering if your diagnosis was Alzheimer’s. If it was then this booklet might be of some help to you. You can download it from this link -


There’s also a Dementia Guide which you might find useful -


Please keep posting It might help to share your thoughts and feelings with others on the forum.
 

Weasell

Registered User
Oct 21, 2019
760
Welcome !
There will be so many people people here who can understand how you must be feeling.
I love to read other people’s posts, over time you can build up knowledge that it would be almost impossible to obtain elsewhere.
Some members with the diagnosis have been posting for years.
Can I ask what you diagnosis was ? Did you have a scan ?
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,442
Yorkshire
hello @Rushdenboy
a warm welcome to DTP

I guess you are feeling all over the place right now .... take time to breathe and let the dust settle ... and chat with family and friends, don't keep this news to yourself

it's good you have joined us here as members are wonderfully supportive and helpful ... so post whenever and whatever, someone will be here to chat
 

Dunroamin

Registered User
May 5, 2019
53
Hi there @Rushdenboy . Yes I understand your reaction completely. I have been diagnosed with Alzheimers. After a short period I shook myself up and decided to sort out things whilst I could. All legal things like POA , DVLA, Will and so on sorted out or upgraded. I make no secret of the diagnosis and all friends and family are aware. I sat with a large writing pad and made up a bucket list of things I still want to achieve (I completed the Manchester Marathon recently - so that is ticked off the list). I have taken up painting and am learning to crochet. Covid has curtailed the bucketlist somewhat, but I intend to get the very best out of life while I can. I also have a ****itbucket for things I no longer can do or want to do.

It can be a lonely and frustrating place after diagnosis. Communication between health professionals leaves a lot to be desired and you can easily fall through the net and get forgotten. Luckily after over 40 years as a health professional myself I am able to navigate 'the system' - but I have still had to fight my own corner on several occasions. Do not be afraid to do so yourself.

I have a support worker from the Alzheimers society and the local Carers Group have been invaluable. My husband has a Zoom meeting with our local group on Thursday and he has had much support from them - please do contact your local group.

Please come back and post when you feel able. There will be many on here with practical help and never ever be afraid to ask.
 

Rushdenboy

New member
Nov 17, 2020
9
Hi there @Rushdenboy . Yes I understand your reaction completely. I have been diagnosed with Alzheimers. After a short period I shook myself up and decided to sort out things whilst I could. All legal things like POA , DVLA, Will and so on sorted out or upgraded. I make no secret of the diagnosis and all friends and family are aware. I sat with a large writing pad and made up a bucket list of things I still want to achieve (I completed the Manchester Marathon recently - so that is ticked off the list). I have taken up painting and am learning to crochet. Covid has curtailed the bucketlist somewhat, but I intend to get the very best out of life while I can. I also have a ****itbucket for things I no longer can do or want to do.

It can be a lonely and frustrating place after diagnosis. Communication between health professionals leaves a lot to be desired and you can easily fall through the net and get forgotten. Luckily after over 40 years as a health professional myself I am able to navigate 'the system' - but I have still had to fight my own corner on several occasions. Do not be afraid to do so yourself.

I have a support worker from the Alzheimers society and the local Carers Group have been invaluable. My husband has a Zoom meeting with our local group on Thursday and he has had much support from them - please do contact your local group.

Please come back and post when you feel able. There will be many on here with practical help and never ever be afraid to ask.
hello @Rushdenboy
a warm welcome to DTP

I guess you are feeling all over the place right now .... take time to breathe and let the dust settle ... and chat with family and friends, don't keep this news to yourself

it's good you have joined us here as members are wonderfully supportive and helpful ... so post whenever and whatever, someone will be here to chat
Hi there @Rushdenboy . Yes I understand your reaction completely. I have been diagnosed with Alzheimers. After a short period I shook myself up and decided to sort out things whilst I could. All legal things like POA , DVLA, Will and so on sorted out or upgraded. I make no secret of the diagnosis and all friends and family are aware. I sat with a large writing pad and made up a bucket list of things I still want to achieve (I completed the Manchester Marathon recently - so that is ticked off the list). I have taken up painting and am learning to crochet. Covid has curtailed the bucketlist somewhat, but I intend to get the very best out of life while I can. I also have a ****itbucket for things I no longer can do or want to do.

It can be a lonely and frustrating place after diagnosis. Communication between health professionals leaves a lot to be desired and you can easily fall through the net and get forgotten. Luckily after over 40 years as a health professional myself I am able to navigate 'the system' - but I have still had to fight my own corner on several occasions. Do not be afraid to do so yourself.

I have a support worker from the Alzheimers society and the local Carers Group have been invaluable. My husband has a Zoom meeting with our local group on Thursday and he has had much support from them - please do contact your local group.

Please come back and post when you feel able. There will be many on here with practical help and never ever be afraid to ask.
 

Rushdenboy

New member
Nov 17, 2020
9
thank you to very one who has replied to my post the idea of a bucket is great I will try that what guide lines did you use if any Ie cost practicality and did you have a time limit sorry if the question seems silly to you but I would not want to put an item on my list that i could not achieve Ie rock climbs swimming with sharks and dolphins as you can see this involve flying abroad
Rushden boy
Dave
 

Blossom50

Registered User
Aug 22, 2016
19
thank you to very one who has replied to my post the idea of a bucket is great I will try that what guide lines did you use if any Ie cost practicality and did you have a time limit sorry if the question seems silly to you but I would not want to put an item on my list that i could not achieve Ie rock climbs swimming with sharks and dolphins as you can see this involve flying abroad
Rushden boy
Dave
Hi
Just wondering if you live with family or if they are nearby for you. Whoever is close to you will need a lot of support too.
 

Rushdenboy

New member
Nov 17, 2020
9
Hi
Just wondering if you live with family or if they are nearby for you. Whoever is close to you will need a lot of support too.
Hi Blossom 50 I live with my wive in Northamptonshire My 3 daughters live 26 miles away in Peterborough but we see the quite a lot
or did until the pandemic hit I was only Diagnosed 3 weeks ago so still coming to terms with it I do know about it and the support need as my mother and grandmother had it. but I know when all this pandemic is over I will get all the support from the family I need .All ready been banned from rock climbing by her who must be obeyed. Al so from swimming with sharks
but am looking at travel insurance for a cruse in 2022 for our 51st wedding anniversary.
But I guess it will be very expensive.
 

Dunroamin

Registered User
May 5, 2019
53
Good to see you have some family support @Rushdenboy and that you are making plans for the future. I am sure you are still reeling from your diagnosis.

As for bucket lists it depends on what YOU want to do while you still can. I have found that noisy social gatherings and having to keep up with conversations quite stressful . So one thing I won't be doing is large gatherings, whilst letting friends and family know how I struggle with this. So far, all are understanding and supportive.

I have been blessed with an ability to backpack all around the world several times over the years, and have also worked in some pretty remote locations abroad. I completed part of Shackleton's trek and had outstanding opportunities to do things. So my bucket list is now quite modest. Travel will now be limited although I yearn to visit NZ one last time. I am reading all I can while I can, gardening, enjoying nature and have ordered an aquarium.

Have you looked at https://www.ncsheds.org.uk/ for ideas. They operate in Northants. Travel insurance in my experience does not cover dementia (if I am wrong others will correct me) but as long as your are covered for repatriation you should be ok Ships have medical facilities but are expensive. Take anti sickness meds with you.

Your local library will provide ebooks and audiobooks for you to download via

https://www.northamptonshire.gov.uk...-your-library/Pages/joining-your-library.aspx

Spotify has unlimited music available plus podcasts on Alzheimers, plays and so on.


Dont forget your family and friends will find the resources on these forums invaluable too.

Basically, make the best of things while you can and keep posting. If I can help further just ask. I have a huge network of ex colleagues and other support groups who help me all the time
 

Lone Wolf

Registered User
Sep 20, 2020
57
Hi there @Rushdenboy . Yes I understand your reaction completely. I have been diagnosed with Alzheimers. After a short period I shook myself up and decided to sort out things whilst I could. All legal things like POA , DVLA, Will and so on sorted out or upgraded. I make no secret of the diagnosis and all friends and family are aware. I sat with a large writing pad and made up a bucket list of things I still want to achieve (I completed the Manchester Marathon recently - so that is ticked off the list). I have taken up painting and am learning to crochet. Covid has curtailed the bucketlist somewhat, but I intend to get the very best out of life while I can. I also have a ****itbucket for things I no longer can do or want to do.

It can be a lonely and frustrating place after diagnosis. Communication between health professionals leaves a lot to be desired and you can easily fall through the net and get forgotten. Luckily after over 40 years as a health professional myself I am able to navigate 'the system' - but I have still had to fight my own corner on several occasions. Do not be afraid to do so yourself.

I have a support worker from the Alzheimers society and the local Carers Group have been invaluable. My husband has a Zoom meeting with our local group on Thursday and he has had much support from them - please do contact your local group.

Please come back and post when you feel able. There will be many on here with practical help and never ever be afraid to ask.
Thank you Dunroamin & Rushdenboy - it is very helpful as a carer to have such insights from your posts. Regarding travel, I would enthusiastically encourage you to do so if that is your desire, and assuming travel restrictions reduce soon. My partner has Alzheimer's, and we travelled frequently and only stopped when she lost her mobility from osteoarthritis and other complications. We both always loved travel, and that love remained with her, travelling to Australia three years in a row after diagnosis, and many shorter trips to Europe. Regarding insurance, we always took the risk and only relied on EHIC for Europe trips, and for Australian trips on the reciprocal health agreement between UK and Australia.
 

Dunroamin

Registered User
May 5, 2019
53
The reciprocal health cover in Australia works very well. I experienced their emergency medicine twice whilst in Tasmania. However, it is limited and WILL NOT cover you for repatriation.
 

Dunroamin

Registered User
May 5, 2019
53
ooops. Apologies if that sounded rather sharp. Just anxious no one falls into that trap as friends fell foul and it wiped out their savings. They needed repatriation from Canada.

Also welcome to you @Wolves . I hope you are getting support?
 

Lone Wolf

Registered User
Sep 20, 2020
57
No apology needed Dunroamin. You have rightly pointed out that repatriation insurance is a serious consideration, which I overlooked in my enthusiasm to encourage people not to necessarily be put off travel by their diagnosis. Regards, Lone Wolf.