“Living well with dementia”
Thank you to all that have helped, assisted and supported me this year, you all know who you are !
Sorry to those of my friends I’ve missed xx
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 ! 😊
I Didn’t think I had any worries. Life was good ! Maybe to good !
Because then it started !
I started worry about some times getting lost, the worry about why I’m unable to accomplish things as easy as I used to,
The worry about why I was struggling with money.
It then started to affect my relationship and family life, The worry then started to affect me !
The worry through the The diagnosis procedure, the worry about what was happening to me.
The Worry i had trying not to worry about the worry !
When the diagnosis did come, that was the biggest worry, but not for me.
My poor wife and children are going to have to deal with the worst ! The late stages when I won’t remember, when I might not know them or even care !
I worry about the shouting I do, for almost no reason, the worry about where that patient and
understanding man has gone !
I worry when I hear my wife crying on her own and when I see a tear in my daughter’s eye.
The worry when I’m locked in a room because my hands are full, I worry when I can’t do my own tie or
Asking your children to tie up your laces and to remind me of their name !
I worry when I stagger and can’t see steps, I worry when I fall !
I worry about respite and day care, I worry about where I’m to go !
My head gets so confused and cloudy, my thoughts don’t make sense anymore.
I worry on the days when I’m tired and find it so difficult to talk
Did I say I worry what’s to become of Me, me that’s starting to disappear, day by day,
I worry about the hold Dementia has on me and my family !
I worry about my lack of love that I used to have, I don’t love or feel anymore
I worry that I can cry for no reason and scream for even less !
I worry about the limited future I and my family don’t have any more.
People say don’t worry ! Life goes on ! Living well with it ! And even the joy !
I worry about people not understanding
I worry with dementia, day by day
I’m not supposed to worry, Ive got to get up and beat this disease, I’ve got to live well with it, we don’t suffer, it’s not painful !
Well then I’ll tell you what ! Let’s swop !
I used to laugh, live and dream ,
Idle summer days, beer and wine.
Children playing,and enjoying my years .
Family, friends and the love of my life,
Memories in the making,
Pictures of the past !
Family, laughter ,and cries of joy ,
Loving and living, tears and frowns .
Clowns and puppets, pretence and fear .
Months and months, year after year !
Ups and downs, round and round,
Loving and living,
Waiting in line.
Joy and laughter, presents and snow
Turkey, crackers, hats and cake
Children playing, noise and fuss
Stressed and anxious, feeling low
Shouting and music, nowhere to go
Staring, eyes open, tears they flow
Pacing, talking, walking And walking
Heart racing, pounding, and feeling sick
head spinning and hurting
It’s Christmas I think
Please give some understanding and a little space for sufferers at one of the busiest and noisiest times of year.
Thank you 😔
Memory is such a precious thing !
you don’t realise how important your memory is until you start to lose it .I don’t mean just forgetting where you put the car keys or where you parked the car this is all part of ageing, all part of natural brain shrinkage. Most of the time all one has to do is stand still, look around and eventually you’ll remember what you wanted to do , or you retrace your steps and you find your car or lost item.
The difference with dementia is that if one should forget something ,that memory is lost forever ! you don’t ever remember . All people seem to do is constantly remind you that you’ve just forgotten . Can you imagine what it’s like to just completely forget where you are ? Or what you’ve done ? Or what you said yesterday or even five minutes ago ! it’s horrific and no sufferer wants constantly reminding or prompting , please 😉😉
Having alzheimers wasn’t, isn’t the end, it was a bloody shock ! Well it was ,after the diagnosis, I thought I was slowly going mad before they finally told me .
but when the doctor sat us down to give a final diagnosis, it was actually a relief ! Can’t explain why , but the wife and I both smiled and said “we knew ”
two weeks later it kicked in, with a sledge hammer ! We all cried a lot that week. Then I thought that there are a lot of people worse off and decided to get on with it and adapt !!
You see ,it’s my family and friends I feel for, they will have to deal with it when I can’t !
They will remember when I won’t ! 😔😔😔😔😔