Hope this is helpful to early onset people

[parkerdart]

Replied this to someone and since it has been helpful to me am hoping to find it helpful to some of you in early onset section.

First will apologize because my words do not come out very great now on some days (this being one)so hope can be understood. Just wanted to be sharing what a nice cognitive therapist that was working with me said I should always be remembering every day. My interpretation of it is somewhat lengthy so sorry, but it helps me much and I hope it will some of you also.

* It is ok to ask for people to slow down their talking. It is ok to say I am sorry but I have a brain disease that doesn't let me process things as fast as you so it would be helping to me if you don't mind, slowing down just a little. She says people will understand that! (found some don't but oh well on them)

* I can't process info great when in stressful spots. Try to avoid stressful spots altogether and if I can't, say I am sorry but this isn't a spot I can be in right now and can we deal with this later. REMEMBER that if I don't I could say a thing I don't want to or that can hurt someone. My filter comes off me and I get angry easy now. She says it is like in fight or flight - I should flight for my good feeling later about me and to not be hurtful which has never been like me before. She doesn't want me to be in a fight position because of bad things stress can do to me.

* If I can be around less people at a time, I will be able to participate more without getting as confused like with more people. Not always a possible but is better for me to not feel bad about what I can't do now. I try to avoid big groups - even family.

* Try to realize when I get up how I think my brain is doing. Some days may be better than other days if I sleep better, do not have more stress on me and many other things. If not a good day, be nice to myself by not trying to figure out so much to frustrate myself. If tomorrow is a better day for my brain, I can do more things then.

* ALWAYS be nice to myself because this brain thing isn't my fault no matter whatever people say or how they act to me.

Not always easy to do all of these, but most days I remember to read this in the morning and try my best. That is all I think any of us that are "afflicted" (never know how to reference this disease on myself) can do.

Have a Blessed day. Vickie

 

[dizzydeb]

Bless you Vicky.
I'm here for my Dad to help Mum and me cope and interact within this loving, caring community.
And i thought i had problems with my chronic back pain. How lucky i am.

Each Day is a new day,
Live each day to the full.

 

[Necion]

Hi Vickie, thank you vey much for your post

It is very easy to understand, you have said everything beautifully. I'm so sorry you have this illness, and hope you get lots of support here, and at home.

My husband John is awaiting a diagnosis, possible FTD, and I have found Talking Point a wonderful family to be part of.

My very best wishes to you Vickie, take care,
Love, Necion. xx

 

[parkerdart]

Dizzydeb - I would not say chronic back pain is being lucky. I guess we do all have crosses to bear. I try not to measure the weight of those of others. I do know manys are heavier than mine.

Necion - Good luck with your husband's diagnosis. Hoping the best for you both!

 

[Grannie G]

Thank you Vickie.

Not only will this help early onset people, it will help everyone who reads it, including carers.

 

[creativesarah]

thanks Vicki

 

[small]

Dear Vickie,

What a wonderful post, I found it very helpful and positive from a carers's perspective. My husband

is 62, and like Necion's husband is still awaiting a full diagnosis.

The thing in your favour is that you seem to be coming to terms with your diagnosis. My husband

is still in fairly deep denial most of the time, outwardly, but is now deeply depressed about his

condition and his conjectured future.

I try constantly to find ways of lifting his spirits, so your little list will come in handy.

Fond regards and best wishes

Jackie

 

[parkerdart]

Dear Jackie-

I hope things work out for your family. It is very hard to be waiting to be diagnosis - I know. Was one of the few times I was being happy I do live alone because I would have not felt good about having to have anyone deal with me then. Somehow it was easier to get a grip to be knowing for sure. At first it is a bunch of the "Why me"'s but luckily for me it seemed after a bit to be making more sense to say "Why not me". I know you will be patient with him because it is such an unknown to all but a very big scary thing for us with any kind of dementia I am sure because much of what we hear are horror stories and it is so hard, especially when you are pretty independent to be thinking of becoming a burder to someone no matter how much you know in your heart they love you. The thing is that he loves you too and for as long as he can know, make what he feels matter and important also...he will do better I am sure if he can feel some in control of himself for as long as he can. Please know my prayers are with you and you can be sending me a PM any time you think I might be able to be of any kind of support - no matter what the problem. Take good care of yourself. Have a Blessed day.

 

[arteangel]

Thank you

Just to say thank you for sharing all of the above It is so good to know, that some of our peceuliaralities can dos and cant do,s ect, are in fact the un seen trials os our days, and although we wish things could go greaqt, and our brain could oblige us by giving us more good days, the thing to remember (when you can) the challenge for me is always, cool, will i be able to better this one day. keep sharing, please

 

[small]

Hi parkerdart

Just to say that i must have forgotten to send [or lost] the reply to your lovely message. How wise you were to remind me that my husband loves me and always will.
He now has his diagnosis and this is both devastating and enlightening.Now he knows why he feels as he does, and evevn when he shouts etc. he quickly comes around and is full of the old love we both had before this all started.
Even though I suspected,for some time that he had AD it still felt like a shock to have it confirmed. It poleaxed John because he had been in denial upto then and was wildly covering up all the time, especially by blaming me. Now we know for certain we can start to come to terms with it and make the best of every day. Thanks again for hour illuminating comments and I hope that you get all the care and support that you need.
Fond wishes Jackie

 

[seaurchin]

Dear Vickie,

Thank you for your clear and insightful message. I recognise a lot of what you say in my husband's condition and ability to cope with his enviroment. It is so helpful to me to be able to understand more about his problems so that I can try to support him in the best way that I can.

Thank you so much and I send to you the very best of wishes.

Kind regards,

Helen

 

[megan47]

Reply to Vicky

Hi Vicky

I am sorry you re starting with this awful disease but from your posy you seem to be coping well. Everything you say is easy to understand - you say it is best not to be with a lot of people and I have always felt that way. I don't go to big sales as I can't bear all the pushing and shoving.

If people seem not to understand you should pity them as there but for grace of God go they. I try to explain that anything to do with the brain is just like any other injured part of the body which is bruised or broken but other parts can be seen by the eye.

Keep talking and as strong as you can we are all here for you.

 

[chez]

Thank You X

Hi Vicky, Thank you for your helpful and truthful post. My Mother in Law is newly diagnosed with Dementia and we need all the information and advice we can get to help her to cope. You obviously have a good sense of humour, stay strong and please keep posting X

 

[Arctophelia]

Early Onset Help

Vickie,

That is an enormous help. I am going to print off your quotation and put it up where I can read it every day; my husband is beginning to show signs of the disease and I really need to keep calm and not get as frustrated as he does! It will all remind me of what he is going through and how I can help, rather than make life more difficult.

Thank you and God Bless.

J

 

[lacey1960]

Thank You

Hi Vickie

Thank you so much for posting this.

My dad has early dementia and this explains so well how he must be feeling. He doesn't want to talk about what's happening to him as my nana died of the same illness and because my mother doesn't want to accept what is wrong with him.

I've been trying to explain to her that she should take some of the stress off my dad but she keeps expecting him to deal with things the same as before. I now realise she can't/won't do it so I'm going to have to help him make the most of what time he has left.

Thank you once again for posting this it really helps me to understand just how he feels as he too has days when he gets angry, especially towards my mam.

Take care and thank you

Karen x

 

[Evie B]

The Shop

I think it would be great if the shop had lots of iteams to help with daily life. Me and my Mum are learning as we go along and just reading this has given me some ideas to talk through with her. Unless someone tells you about these things you just don't know. If you could buy these things before it becomes a massive issue it could save some heart ache.

Stock up the shop, I will buy!!

 

[stephi]

Hello

Thanks very much for the information - I found it helpful as my mum was recently diagnosed and I can recognise some of the emotions you talk about. I am learning about this disease rapidly and I welcome any articles like this - my mum would not be able to articulate so well as she has problems with reading and writing now