Beginning of this journey

[annesharlie]

Hello-
I just wanted to introduce myself to this caring forum. My husband - 52 years was a practising doctor in our community until last week - it looks like he has early onset dementia. A cat scan ruled out brain tumor or stroke. It is going to be a long and difficult journey for us both, and as I don't know anyone with any kind of dementia, I thought it would be good to connect with an on line community.

He sees a Neurologist tomorrow to begin an indepth assessment and we'll hopefully get a clearer idea and diagnosis. It's a hard time when I know something is very wrong but don't understand exactly what.

Thanks
Anne

 

[Brucie]

Hello Anne, and welcome to Talking Point.

First thing to say is that I hope some other diagnosis is found. 52 is well into the young onset/early onset area, and I know I don't need to tell you how unfair that feels. My Jan was 50 when her symptoms started. We had 8 years of tests before we had a diagnosis, so you are already on a faster track!

I hope you will find Talking Point a real help to you both, as it has been to so many of us. We have quite a number of Canadians who are members and even more Canada-philes amount our fellowship!

Best wishes

 

[Grannie G]

Hi Anne, a warm welcome from me too.

I`m sorry your husband is suspected of developing early onset dementia, 52 is so young. We seem to be hearing more about early/young onset each day and it`s quite frightening.

My husband is 74 and was diagnosed in September 2005. It is a hard road to travel and TP has been a life saver. Only here have people really understood.

I hope your husband gets a treatable diagnosis, but if not, I hope you find the support on TP you need.

Please let us know how his assessment turns out. I wish you both, all the best.

 

[Skye]

Hello Anne. Welcome to talking Point.

You have my sympathy that your husband has developed the disease so young. My husband was 66, and I felt deprived of the enjoyable retirement we had planned. It's so much harder for you.

You have found a very caring community, which will give you tremendous support in the years to come.

Let us know how the assessment goes.

Love,

 

[bel]

anne

i feel for you and send you a big hug
iknow you are in the right place so many caring people in the same boat
please keep posting
love bel x

 

[jan.]

Hi Anne,
Welcome to TP,
So sorry to read about your husband, 52 is so young..........
You couldn`t have found a better "club" to join than Talking point. The people on this site are so informative, and there is always someone with the right info for you, at the right time.

Please post again soon and let us know how you get on,

Love Jan. X

 

[lornastevens]

Unfair

Hi Anne
My name is Lorna and my sister who is 48 years old is currently being assessed and the diagnosis is Alzeihemers or possibly Frontal Temporal dementia, However both conditions have pretty much the same affects.

I am new onto this site and although it is my sister and not my partner all my family and i are finding this all very bewildering for someone so young. We have had concerns for about five years i have to say.

Also we live in Hertfordshire, UK and my sister lives in Ireland with her husband and only son (24) so it is very difficult to cope with for all concerned.

I wish you and your husband well and trust the knowledge that you are not alone is some comfort to you.

All the best
Lorna

 

[annesharlie]

Thank you to you all. I wish I could see your notes as I write this reply. Lorna, I feel so much for you, it is SO hard with a person so young, as I know.

We had the Neurologist visit, he confirmed the diagnosis of Early Onset Dementia, though says we need a full assessment with the UBC team in Vancouver. Anyone with experience of what that would mean? When I mentioned I was very stressed and upset over this, and Ron so calm, he said I need to relax a bit and not be so stressed ... right after giving this diagnosis! Of course I am in a state, as all of you know, you'd have to be completely uncaring not to be upset.

We also have an EEG booked, as well as MRI - Can someone tell me what these show?

I have an appt with a psychiatrist tomorrow, not that I really need one, but I do want to learn some coping stratagies, and esp how to help my kids through this - 24, 21 and 17.

Thank you all so much.
Anne

 

[Brucie]

We also have an EEG booked, as well as MRI - Can someone tell me what these show?

Hi Anne

EEG checks normality of brain waves
http://www.bbc.co.uk/drama/holbycity/glossary/e.shtml

MRI does imaging of soft tissue
http://www.alzheimers.org.uk/Facts_about_dementia/What_is_dementia/info_Aids.htm
and
http://www.bbc.co.uk/drama/holbycity/glossary/m.shtml

I'm a simple-minded soul and think of these tests as tests on a car.

I think of the EEG as plugging the car's computer into the garage system to check the electrics.

The MRI has us opening the bonnet [hood in your case] and checking all the bits are still there.

The MRI may show what looks like a worn ring-dongler in the engine compartment [I'm not a mechanic so just make up the terms.. ], but that may still work at present.

Both tests will be indicative of something. Perhaps the ring-dongler controls the brakes and steering so it is worth knowing that this may be about to fail.

All may look well on the EEG and MRI fronts for our car. Trouble is there may be pollutants in the fuel that will trash the engine ultimately, or the tyres may wear smooth. All of these will affect the performance of the car.

So these tests are just part of the way we need to look at the whole machine.

With a car, of course, we can fix any problems or - in extremis - get a new one.

With our loved ones, that is not an option.

 

[lornastevens]

Hi Anne
So hard for you all and very confusing. The detailed reply from Bruce seems better than i could tell you with all the tests.

I think the one thing to hold onto is that medication helps and although sometimes unbearably difficult underneath this condition the person you love is still there. A little lost, confused and different but still there.

I am thinking of doing a collage of photos with dates and information to capture all our memories of my lovely sister. We will all still have our memories of all the good times when things were better.........................

Anne stay strong and take all the help you can get, you may not feel like you need counselling or physiatric help but take all they offer!! You will get through this, you will learn from it, you will get stronger from it and you will remain a loving wife and mother. You can do this.

A big hug and sincerest best wishes.

Lorna xx

 

[nicetotalk]

Hi anna

i am so very sorry that your husband has early onset dementia my mum was 54 when she was diagnozed but must have had early symptons befor this. My heart goes out to you, you will find this site very very usefull as i have. Any questiones day or night you need answeres to just ask. We are all going through or have been through someone close to us withthis awfull illness, its just so sad when someone is diagnozed so young, you take care of yourself and you partner.

kathy x

 

[annesharlie]

Thanks

Bruce, thank you so much for your clear explanations, even though I don't know much about cars, it makes sense! I am doubtful much will be seen in the MRI.

Lorna, I can't imagine going through this with your sister, my two sisters are such a source of strength and love for me. I feel for you too. Kathy, thanks also for your reply - it sounds like it's been a difficult road with your mom too.

We had a very long assessment this afternoon with a psychiatrist who specializes in dementia. She did a moca( sp?) test - I don't know the exact score, but I was crying as Ron battled and couldnt' do quite a bit of it. That was hard to watch - you've all been there, I know. Anyway, the verdict according to her is a fronto-temporal dementia, he's evidently quite typical, though of course its' a very rare disease. She was so good and is going to meet together with myself and the children - there is so much I don't know and need all the help I can get. I do feel a little eased knowing I'm not totally alone. Thank you to you all for your care. It's a very horrible time.

I'd like to hear from those of you much further down the journey - which is the worst time? Is it the end? Is it the time of diagnosis? I - blissfully ignorant - am tending to think that toward the end it may actually be a relief?

Anne

 

[Grannie G]

Dear Anne,

Although those with Frontal temporal lobe Dementia don`t seem to have quite the same journey as those with Alzheimers, we all share one of the worst times, which is coming to terms with the condition.

When you cried as you watched your husband struggle with a test he would previously have been able to do wearing a blindfold and earplugs, you experienced one of the worst times.

As your husband fights to retain his independence, self esteem and dignity, you will share one of the worst times.

If your husband, in his frustration and fear, behaves in an aggressive manner towards you, you will need to learn not to take it personally,` it`s not him, it`s the condition`, and that is one of the very worst times.

I`m so sorry to paint such a negative picture, and perhaps it will be better for you, but as far as the worst times go, I could go on and on and still leave something out.

On the other hand, someone else could post a reply which will make much easier reading.

What I can say, is how much help I have received here on TP, from so many people who understand what we`re going through. They, who once were strangers, have provided more and better support than family or long standing friends, because they know, and there is always someone here.

You take care and keep in contact. Unfortunately, as time goes by, you will find the answers to all your questions.

 

[Skye]

I'd like to hear from those of you much further down the journey - which is the worst time? Is it the end? Is it the time of diagnosis? I - blissfully ignorant - am tending to think that toward the end it may actually be a relief?

Hi Anne

Of course you're upset at the diagnosis, it's something none of us want to face, for our loved ones or ourselves.

But on the other hand there must be a slight feel ing of relief that now you know, and can start to make arrangements -- and come to TP for support and advice?

I'm afraid Sylvia is right -- there are so many 'worst times'.

The problem is that no-ne can tell you exactly how this illness will dvelop -- no two sufferers are the same.

A problem arises, you panic, you think you can't cope, you ask for help wherever you can find it, including here. You find you can cope, and you relax a bit, and you come on TP just to chat, and to support others...............

until the next problem hits you!!

I'm afraid you're right, it is just the start of your journey, and no-one can pretend that it will be easy. But you have found TP, and we are here for you, whatever yopu feel like. Cry, rant, ask for help, help others, chat, or just be stupid at times. It's what we do, and it's a lifeline.

Lorna, I want to welcome you to TP too -- all the above applies to you too.

Please, both of you, join our family.

Love,

 

[connie]

Dear Anne, so sorry to read your news, but so glad you have found us here on TP.

Try to remember that your husband is still the same man today, as he was before they put a name to the illness. Take each day as it comes and try to enjoy the now. Whatever happens in the future it's today that matters.

My dear Lionel was just 60 when he was diagnosed, and we then spent two of the happiest years, doing all the things we could. Everyone with this desease is different, and in Lionels words "Today is as good as is going to get" Make each day count.

 

[annesharlie]

Sylvia
I really do appreciate your honesty - I know we'll have times when I feel as deep a despair as I do right now. Ron - obviously because of the temporal lobe damage - is so very calm, accepting, not crying,angry,frustrated... I know that is making it easier for me that he's this way.
Hazel - thanks too, I know already I'm REALLY going to count on the group to connect with. I think the hardest for me has been this evolution from a marriage of equals to a relationship where I am the carer - more like mother/child in many ways.
Connie, I know what you mean about today being as good as it gets. I very strongly felt that yesterday when he was doing the tests... that he would never get any better, in fact it would never be as good as this again, and I actually felt a deep horror, fear at that, it didn't comfort me. At the same time, I do realize that we're at the stage now where he is still functioning ok, and I need to make the most of that, going out as a family, movies, hikes, etc for his sake, as much as for our own, knowing that we made the most of what time was left to us.

I have a psychiatrist appt on Monday, just for myself, and I know it will be very helpful.
Thank you all again. I will hopefully be in a position now to read through some of the past history on this forum, so that I can know each of your stories, each so moving and difficult.

Anne

 

[Sandy]

Dear Anne,

Glad to see that you're already getting the support you sought from Talking Point.

Now that you have a diagnosis of FTD, you might want to also look at the info on the Pick's Disease Support Group:

http://www.pdsg.org.uk/index.php

There is one page that I remember reading some time ago, it was a first-hand account of FTD from a gentleman who was also a GP:

http://www.pdsg.org.uk/caregiver_stories/picks_from_the_inside_out/

Also, you mentioned in an earlier post: "I wish I could see your notes as I write this reply.". Whan you are composing a reply, you can see the earlier postings in the thread by scrolling down the page - they are just under the composition box.

Take care,

Sandy

 

[lornastevens]

Frontal Temporal Dementia

Hi Anne
My sisters diagnosis is Frontal Temporal dementia and whilst it is similar to AD it is slightly different. Her biggest issue at present is depression, she is very tearful and gets frustrated that she cant do things. She also says she is bored but her husband tries his best to keep her busy - she has started horseriding and all sorts.

She responds well to all her family and loves to be hugged and told how much we love her although she is not as responsive to her husband.

So difficult for you and your family but try and keep positive. There will be good times and you havent lost him, he is just changing. All the things he felt before are still there maybe hidden but still there.

I wonder if anyone in TP know of any support groups - my mum especially is finding it all very hard and Marie is constantly saying "i want my mum, cant you come over" (she lives in Ireland). Mum has some health problems of her own that we have to get over before she can make another trip and cant cope with Marie crying and depressed down the phone. We live in Hertfordshire.

Please all take care and trust in the love you have,
Lorna

 

[Grannie G]

Hi Lorna,

So far, my husband is still considered to have Alzheimers, yet his two main problems too, are depression and boredom.

Whatever I suggest to relieve this boredom, apart from planning holidays, is usually answered with `I can`t be bothered.`

He can`t be bothered, because he `can`t do`. He doesn`t have the ability anymore to do any task which requires concentration, staying power, physical dexterity or even sustained interest. I find it impossible to occupy him, and so he is bored, and so he is even more depressed.

Even on holidays now, the journey exhausts him, the trips we go on are overwhelming, there`s too much to take in.

If I had the energy, I would start a Support Group for both Sufferers and Carers to attend together.
We are not yet at the stage where I need respite, but I would love somewhere where the two of us could attend as a couple, and get to know other couples in a similar position.

 

[lornastevens]

Boredom and Depression

Hi Sylvia
Thanks for your feedback i guess it is symptomatic.
I understand about the holidays - marie is obsessed with who is visiting when and the next "trip" but has no concept of "we will be with you in 3 weeks". She builds up the anticipation and then is very quickly on to the next thing.

She is also obssessed with her 50th Birthday which is 2 years away and clothes!!
Bless her!

Like you i think groups you could attend in partnership would be great but with the constant battle to keep yourself and your loved one going i guess having the energy to instigate that is really difficult.

you sound very strong and capable and i am sure you will get through this and i thank you for sharing your thoughts.

All the best
Lorna xx