A diagnosis at last!!!!

[Kate P]

Finally, after four years of heartache we have a diagnosis for mum - FTD.

Mum had an appointment at Walton yesterday - none of her files or brain scans had been sent over and they had no idea why she was there - not a good start. Unbelievably it's the first appointment I didn't attend - my sister offered to go as I was so stressed after last week!

As it turned out the consultant decided to start from scratch with the assessments and asked dad and my sister to fill in a questionnaire which was new as the previous consultants have never been especially bothered with our opinion.

He confirmed the diagnosis, looked appalled at the fact that the previous consultant had said it couldn't be FTD because it wasn't connected to speech.

Mum did not react well to the news and starting shouting and tried to make a run for it so they pacified her by telling her it wasn't really dementia.

There is no treatment and he said he would have to refer us back to the previous consultant. I'm not happy about this because she clearly doesn't know about FTD so how exactly is she meant to help us?

No one has talked about what we do now - do we need to contact social services to discuss carers etc?

On the plus side dad has taken the bit between his teeth and seems to have finally accepted the diagnosis. He is taking leave from work for a while to buy us time to figure out what to do and he has accepted that mum should no longer drive and is working out how to take the car off her - big sigh of relief to that!

So what do we do now?

 

[Grannie G]

So what do we do now?

Dear Kate.

You take a deep breath.

Then you go back to your mother`s GP and ask for your mother to be referred to SS, for a Carer`s Assessment for your father. You can also ask for a CPN to pay a home visit.

You can also ask your GP if your mother can see any consultant other than the one your mother has been referred back to, as you are not happy with her previous care.

And you can give your father as much support as you can, but give yourself time to concentrate on your daughter.

Now your father has accepted the diagnosis, there is a lot of help available for him if he stands his ground and applies. This should take some of the pressure off you and your sister.

And of course, TP is always here.

I`m sorry about the diagnosis. Even though you knew, don`t be surprised if you have a delayed reaction. It`s one thing to suspect and quite another when your suspicions are confirmed.

Take care

Love xx

 

[connie]

Kate, I do so feel for you and the family.

I will be completely honest now. You have to remember mum is no different now to what she was yesterday...............so as well as putting all the help and resources in place.........remember to enjoy.

Enjoy each little moment of fun and laughter. Enjoy your time together.
That was the best bit of advice ever given to us, and it became Lionel's mantra.

"Today is as good as it is ever going to be" So right, so true.
Sometimes as we focus on the impact of the illness, and the 'what will happen', we lose sight of what is impotant.

My heart goes out to you, mum and dad. You seem to be trying to think ahead, but as and when things fall apart, remeber the good bits.

 

[Skye]

Kate, i know you must be feeling shell-shocked at receiving the diagnosis, but Connie's advice is so good. Your mum is just the same as she was yesterday, and the good news is that your dad has begun to accept things as they are.

Give yourself time to absorb things. You don't have to do everything today. Spend some time with your mum and dad, just quietly talking things through. And as Connie says, make sure there is still fun in your lives.

Then whan you're ready start to help your dad with arrangements. Carers will make a huge difference, and will take some of the pressure off you, and give you time to care for your little girls.

One other thing you need to think about is EPA, and it would be sensible for your mum and dad to both make one, naming each other and you. That needs to be done while your mum still has capacity to understand what she is signing.

Good news too that your dad has accepted that your mum shouldn't be driving.

So it's not all black. Just try to relax, and take things one step at a time. You've done such a great job to have got to this stage.

Love,

 

[Mameeskye]

Kate

I am just going to return that hug to you again (((((((((((((hugs))))))))))))))))).

Getting the diagnosis is hard eventhough you are expecting it but it does make it easier to move forward and has helped your Dad see more easily what is happening.

As the others have said it can make you feel quite tearful and if this happens give yourself time and don't try to hide it. I found in the early days when I would burst into tears that my sons who were about 20 months old at the time would just give me a big hug.

I found that my children were a great source of comfort to me at this time as they made me carry on, although I did grieve as I knew they would never really know "My Mum".

The others have given good advice as to where to go from here. Take your time and consider your options togther as a family and take the time to be with your daughter. Don't feel bad about enjoying the good times too, because there will be good times, both with and without your Mum.

Love

Mameeskye

 

[Cate]

Hi Kate

I am so sorry that you have had the diagnosis, but at least you now know what you are facing.

It must be a relief to you that dad has now accepted the situation, at least you can start pulling together to make life easier for mum. Bless her what a shock for her, and if it means less hurt for her, yes you are right to tell little fibs.

I hope you find a Consultant you feel happy with and trust, and get all the other services on board working with you.

You have a long bumpy road ahead, be brave, take a deep breath, and take it day by day. You will still have good times with mum too.

Love

Cate

 

[jackie1]

Hi Kate,

All I can really do is re-iterate all the advice given above. The diagnosis is like a double edged sword, it gives you answers but at the same time taking away hope (at least that's how I felt)

If you can try to live each day as it comes. That is such simple advice yet if your a planner it is just so hard to do. Don't try to fight against the changes in your mum accept them and love her as she is.

An a practical note may I suggest the following, these are in no order and to be done as and when you feel up to it.

1. Contact Social Services, they can provide lots of advice and ensure that your parents are getting all the benefits (DLA, reduced Council Tax, Carers allowance etc)

2. Get a Power of Attorney drawn up, before the end of teh month if possible as that is when the rules change.

3. Contact your local Alzheimers Society, they will probably run courses (these cover all kinds of dementia)

4. Contact your local Crossroads, they may be able to come in a sit with you mum so that your dad can get out at weekends/evenings.

5. Any money your mum has in her name or in Joint names look to move it into your dads name

I hope that helps in some small way.
Love

Jackie
xxxx

 

[jenniferpa]

Dear Kate

As others have said, it is peculiarly bitter-sweet to finally have formally acknowledged what you suspected all along. One of the few occasions where one wishes one was not correct. Nothing to add to the suggestions of the other posters, but I did want to issue a warning. Do not be surprised if your father "back slides" into disbelief. It's human nature not to want to beleive something like this. If he happens to read anything about FTD he might well think "well she doesn't do that so it can't be FTD". So bear that in mind.

I would also reiterate the advice about checking to see if your mother can see a differnt consultant. At the very least, this woman has shown that she has had little experience of FTD, and while there may not be any medical treatments, I think your family are enititled to the services of a doctor who has experience in this field, since without medical treatments, all that is really left is support, and how can you be expected to get that with someone who knows so little about it themselves? Having said that, if it simply isn't possible to get a change, then you'll have to try and look at it as a joint learning experience (not really what it should be, but if nothing else, it might make this doctor more aware when she's confronted by her next FTD sufferer).

Love

 

[sue38]

Hi Kate,

I'm sorry you have had the diagnosis, but as others have said at least you know now.

I think no matter how much we expect the diagnosis of dementia, there is a tiny part of us that hopes that the doctor will say no it's not dementia but some other condition for which there is some marvellous cure. When our fears are confirmed that tiny bit of hope is extinguished.

When I look back to 12 months ago, pre-diagnosis for my Dad, I think I have come a long way in coming to terms with the situation. I know there is no way back, I have stopped blaming my Dad for his behaviour and my relationship with him has changed, but mostly in a good way. As Connie says I now treasure the good times rather than taking them for granted.

I am still totally stressed but able to laugh as well.

 

[Kate P]

Well thank you all for such a wonderful wealth of support and advice - especially the deep breath - I think that's exactly what I needed to do!!

It's good to know how to get Social Services involved - we weren't sure about that - dad has booked an appointment with the GP for Friday to do arrange that. I had totally forgotten about Crossroads so I shall get some information about that.

Unfortunately, our local AZ meeting has only recently reformed so there's no courses available at the moment but I may put forward a suggestion to see if they can start them up again because I think dad could really use more help than just my sister and I can give.

Luckily, because of all the good advice provided on here I've managed to sneak in a few of the things already - persuaded mum and dad to do POA forms so dad is going to ring his solicitor today to register it.

Also luckily, I work for the DWP so I have plenty access to advice on benefits and stuff.

I also thank you all for reminding me to stay positive and to help all of our family to enjoy what time we can. I wish it hadn't taken four years to get us to this point as I feel much time has been wasted already but it's done now and can't be changed.

I'm sure we'll have plenty more questions and problems as time goes on but for now thank you all for your support, advice and kindness - it's got us this far.

{{{HUGS}}}

 

[Sandy]

Hi Kate,

Any diagnosis with the word "dementia" in it is bound to be daunting, but FTD can be especially challenging.

If you haven't looked at it already, you might want to visit the web site of the Pick's Disease Support Group as it does have information specific to FTD:

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

It's possible that one reason your father has been reluctant to recognise your mother's symptoms as being caused by dementia is that people with FTD (from what I've read and seen posted here on TP) do not fit a typical Alzheimer's profile. Once your father starts learning more about FTD, some aspects of your mother's behaviour may make more sense in light of her diagnosis.

Take Care,

Sandy