Talking about your diagnosis to your family and friends

Dealing with your diagnosis is hard – not just for you but also for those around you. When a person is diagnosed with dementia it falls on the whole family, even touching friends.
it may feel be easier not to talk about it. But talking about it can also help the way you feel about things. It’s the old saying, sharing is caring and if you want or need support there has to be a level of understanding.
A diagnosis of dementia often comes as a shock or sometimes even relief just because you now have a label, you now know why you are having problems.
Even if you have been half expecting the diagnosis it can still be a worrying and upsetting time. It will also be hard for those close to you, maybe even harder, This is the time to collect all the facts and info you can, give all of your family a scrap of paper to write down any questions that they might have, organise a group or family meeting.
You will still or should, want to remain as independent as you can for as long as you can. You will need a certain amount of help and support as the dementia progresses, so you need to make your wishes know and it is important to make sure that other people don’t take over your life when you can still manage it. Make sure that you are consulted on all matters that concern you. Make your own choices for as long as you can, you still need to feel able to retain your confidence and dignity, by explaining this your family and friends, they won’t overcompensate, which can be very easy to do.
You will need to discuss plans for the future with those who are close to you and with certain professionals.
If your family and friends do not already know about your diagnosis, you really need to tell them sooner better than later, it won’t get easier ! Try to tell them as soon as possible. At first, they may not want to believe you, would you ? I put a status on face book explaining what diagnosis I’d just had and difficulties I might encounter, I got to tell lots of friends almost immediately, email is good too.
If they get upset by the news. Try to be calm, maybe try and pick who you consider to be the calmest person in the family, tell them first and get some one on side as it were !
Try to chat about your own wishes for the future, but don’t ask people to make promises now that may be difficult for them to keep later. A good idea is to write your wishes down.
You may want to talk about end of life care, do so ! It’s very important to discuss this difficult subject. Pick your moment, be light hearted and reassure your family that you are not being morbid, you just want to share your thoughts to make it easier for them when the time comes.
Ask them what are their ideas on some of the stuff you’ve talked about, more minds are better than one, they might come up with thoughts that you haven’t.
It may even help if you can talk about your feelings to someone you trust outside the family, get an unbiased veiw, it can help immensely.
There are some good books out there that can help you explain to your family, you tube has lots of videos that explain dementia very well, stuff like this can only help, the more your family and friends understand the better.
Talking to your children or grandchildren may seem a more daunting, but you do need to explain what is going on in your life.
They may worry less once they understand what the problem is, which is all the more reason to have a discussion, it may help you clear things in your own mind too. Try to be honest, although they may find the news quite sad, they need to know that any changes you might experience are likely to be because of your illness, they may have completely got the wrong end of the stick so to speak, they might also think that it may be something they’ve done wrong, so you speaking and explaining may help more than you know.
A child can often cope better with the truth than most adults.
Children deal with difficult situations remarkably well, as long as they can understand what is going on and as long as they have your support, and support from other adults around them.
As I’ve said just be as honest as you can but don’t dwell to much on anything distressing and allow your children or grandchildren to ask as many questions as you can.
Children from the age of eight or nine can understand very difficult concepts, more than you’d sometimes give them credit for, I know mine did. They may ask very difficult questions but encourage them to do so, if they are talking or asking, keep communication open, listen to what they say, and try to answer them truthfully, If you don’t know what to say or can’t answer, just tell them you aren’t sure but you’ll find out and get back to them, but please do so, children don’t have bad memories 😊.
You may have to watch that their school work doesn’t suffer, concentration may suffer, so a good idea is to keep in contact with their teacher, so as you see, this need to know basis is getting bigger !
Sometimes a child will try to hide their feelings. They may have bad dreams or behave badly, these could be ways of coping and they maybe need a bit more support so just try to keep chatting, always ask if they have questions.
I’ve said or mentioned children a lot but with a bit of common sense most of what I’ve said can apply to teenagers, my 16 year old, once educated in what way my illness might limit me, never once ever told me again that I was repeating what I said, which really helped me, I personally don’t want reminding.
It’s things like this that can help you personally, because it is so individual, things need to be said, so that with understanding will come an action or reaction. Grief,sadness, loss, anger, irritation and impatience are also common reactions for anyone, adults and children.
But one has to remember that younger people or children maybe less skilled than adults at coping with these emotions. Try not to be upset if anyone in your life shows these emotions, it’s only going to cause upset to everyone otherwise, easier said than done, I know only to well.
Older children, in particular, may appear not to react at all. This may be because of embarrassment, or because they just don’t want to upset anyone. Just try to encourage them to talk, this will help them.
But never force the issue, some people just need more time, as will yourself sometimes. Everyone will need time to come to terms with new difficulties.
Don’t be afraid to use humour. We use humour a lot in our house, it really helps and costs nothing. Dementia can seem a very bleak and unfunny prospect but humour can keep many people going, we speak a lot about what Mr.Alz has done in our house.
By simply talking about dementia to your family, friends, neighbours and colleagues, you can help more people become aware of it and understand the condition. I know that when I was diagnosed, none of my my family understood it, so the wife and I are now big advocates for awareness, giving dementia a voice !
It also helps dispel common myths and misconceptions, for example, many people think dementia is a natural part of growing old, that it’s all about memory loss, most have heard of dementia but don’t really understand at all.
So with continued support and understanding from family, friends and various support services, people with dementia can have a full, rewarding and productive life. You don’t suddenly become in later stages, there is a beginning and middle to the illness too.
There is much that you can do in the early stages that will help make life easier and more enjoyable, for now and in the future.
I’m not saying any of this will be easy, we’ve had many ups and downs regarding family and friends, we’ve shed tears and still do, it’s a big learning curve for everyone !
Some friends have fallen by the roadside, but most I don’t see because I don’t visit them either, out of sight out of mind ! So don’t blame the illness on everything, but enough, I think living well with dementia is a story of it’s own.
So please have that talk with your family and friends,
the sooner the better ! 😊

Becoming a Dementia advocate

Here is something I wrote for my good friend Thomas Whitelaw,

When you get diagnosed with an illness that will lead to dementia your whole world gets turned upside down, after medication has been discussed, power of attorney put in place, wills made or remade, you suddenly realise you have so many questions,but the time you had to ask has been and gone.
Your whole family is affected, relationships become strained, the whole family share the diagnosis.
It’s so hard to explain how you feel, what’s going and more important what isn’t going on ! You can start to feel so alone, it almost becomes us and them !
There is lots of information out there if you look hard enough, lots of support for folk helping to care and help you, if, again you look hard enough.
I and my wife became very involved in dementia awareness and promoting education and understanding because for a really well known word, everyone has heard of dementia, we couldn’t believe how little most folk know about.
We became dementiafriends.orgDementia Friends Champions, we do it together as a pair, as a couple because that’s what we are, a team ! Especially since I don’t drive of cross roads very well on my own any more, but as a team my wife helps me to give the 45min session, we’ve yet to see folk that attend not being interested.
But I still thought yes there is room for more help for the person living with dementia, I then came across two Americans on the internet, Harry Urban, who has Alzheimer’s and Gary LeBlanc, who cared for his father.
They were thinking just the same and came up with a website aimed at folk with dementia, dementiamentors.commade the whole site very user friendly, in fact it’s excellent.
They recruited a few folk that had various illnesses that came under the dementia umbrella and asked us to make small 3min video’s on subjects that might of help to others. These are shown for a month then archived, then different ones are shown. The knock on effect is that one day you can feel quite useless, then make a video that helps others and you get your confidence back, you are now making a difference.
This has now led to three online virtual memory cafés a week using a software called zoom, that is so easy to use, and you’ve then got people from all walks of life, from lots of different countries chatting and helping each other, all of a sudden you are not alone any more.
This website, which was aimed at diagnosed, is also a great source of insight for all, family members, professionals and cafe staff etc, it helps one to understand what is going on in our lives, bug the biggest message is ‘ you can live well ‘ or at better with the right support , you get that support with understanding.
folk only think of the late stages, well there is also a beginning and middle !
Please vist dementiamentors.comand if you have dementia, please get involved, you aren’t alone