Diagnosis at last - thank you TP

[Gromit]

Hi everyone - I haven't posted for quite some months now but I just wanted to let you know that we have now got a diagnosis for my Dad. You all provided me with excellent advice - my Dad was in denial and very stubborn and your advice helped me and my Mum get Dad seen by the doctor (with a few little white lies) and eventually the memory clinic - thank you for your help and your suggestions. It has taken six months but last Wednesday after many assessments and a CT scan we now have been told that Dad does have Alzheimers and although this is very upsetting for us, it is also a relief to know what we are facing.

Dad is going to be starting on Reminyl which I believe can help slow down the process (fingers crossed).

As Daddy's little girl this has come as a real blow to me (I think I was hoping for a it to be something else - though deep down I knew), so in order to provide Mum with the emotional support she needs I am going to have some councilling sessions to help me come to terms with it and be at my best to help going forward.

We aren't sure what will be around the corner for us - Dad is still himself, though he is very repeatative and has short term memory problems. But he is able to joke about it and has accepted that his memory isn't what it used to be. He is still stubborn though and won't write things down - but we are working on that.

I hope you don't mind if I re-join the discussion forum, as I am likely to have many questions - and hopefully I will now be in a position to help others.

Thank you all.

Gromit.

 

[Grannie G]

Hi Gromit,

Well I don`t know whether to be pleased or sorry for you. Pleased because the uncertaincy is over and you`ve finally got the diagnosis you suspected all along, or sorry because it is your dad we are talking about and your family will face difficult times ahead.

I wasn`t aware you had left the discussion Forum. As far as I`m concerned, once a member, always a member, and the Forum is here to be used as and when the need is there.

I hope your dad finds Reminyl successful.

Take care, and keep us posted.

 

[BeckyJan]

Good to hear from you. I cannot really say I am pleased you have the diagnosis you have but as you say at least you can plan forward etc. I just hope the medication helps to slow things down. Its good you feel that your Dad is still much himself - enjoy that. He himself will settle down once he comes to terms with his condition. My David was wonderful after the first few weeks and was reasonably happy to tell everyone what his problem was. That helped me alot.

Others will be pleased to hear from you - there was a post asking if we had heard from you.
Best wishes Beckyjan

 

[Gromit]

Glad to be back

thanks - its good to be back. I really do feel like I need to talk to someone at the moment. I'm sure my husband is tired of seeing me upset about this (bit of guilt monster there I think). At the moment I have been signed off work by my doctor (burn out) I was working silly hours (30 hours in two days once - trying to distract myself I think) and have ended up losing my sleep pattern - which we are trying to get back. I travel alot with work (I'm a management consultant) plus I travel every month from Edinburgh to Yorkshire to see my Mum and Dad - I would do this more often if I could. My husband and I argue alot over silly things (my patience isn't what it used to be) and I sometimes feel I am losing the plot. but I am determined to get myself back to being strong again so that I can help Mum and Dad as much as possible. My brother lives much closer to Mum and Dad (about an hour and a half drive away - I am four hours away by train!) he has told me he can't cope with the emotional side of things - but will deal with practicalities when they are needed. So I feel things are left to me pretty much - as it is emotional support Mum needs the most. My job means that I go to companies and fix things - this is something I cannot fix - and I find it hard to accept this. There isn't a solution.

I hope you don't mind me waffling a bit - I'm feeling a bit low today. I seem to do a lot of crying and get very emotional over little things - is this normal or am I going mad?

This disease is absolutely awful - its bad enough for the person that has it - yet it also seems intent on destroying anyone that comes near it! The only thing I think I can do is arm myself with as much knowledge as possible and surround myself and my Mum with the support we need - TP you are definitely needed!

Will try be more cheery on my next post - promise.
X

 

[Skye]

My job means that I go to companies and fix things - this is something I cannot fix - and I find it hard to accept this. There isn't a solution.

Hi Gromit, good to see you back -- although I'm sure you would prefer that it wasn't necessary.

You've hit the nail on the head here. Part of the stress of AD is the sheer frustration -- both for the sufferer and for the carer. It's so hard, because you never know what is going to hit you next. And although you may be able to slow the progression with medication, there is nothing you can do to stop it. Scary stuff!!

I hope you don't mind me waffling a bit - I'm feeling a bit low today. I seem to do a lot of crying and get very emotional over little things - is this normal or am I going mad?

No, you're not going mad. Your emotions are completely normal. You're facing the loss of the person who was your much-loved dad, you're facing resposibilities that you're not sure you can handle, and you're upset and scared. Join the club!. I don't think there is anyone on TP who wouldn't identify with you.

This disease is absolutely awful - its bad enough for the person that has it - yet it also seems intent on destroying anyone that comes near it! The only thing I think I can do is arm myself with as much knowledge as possible and surround myself and my Mum with the support we need - TP you are definitely needed!

Will try be more cheery on my next post - promise.

You're doing all the right things. Don't worry about being cheery -- until you feel like it. Just go with your emotions, and let TP support you.

Love,

 

[Grannie G]

Dear Gromit, TP is here for people to off load, rant and rave and try to get rid of all the frustrations, anger and guilt that pile up.

So no apologies are necssary.

However much you expected the diagnosis, there is a big difference between expecting something and having it confirmed. You really are going to need to give yourself time to make the necessary emotional adjustments.

To be a long distance carer, with a demanding job and family, is the most difficult position to be in. You are not going to be able to meet the demands you intend to put on yourself, without it affecting some area of your life.

When I cared for my mother, she lived a 15 minute walk away, and I worked school hours and had school holidays, plus a husband who was born into a culture of veneration of the elderly.

Now I care for my husband, am retired, have no dependent children and a son who lives 5 minutes away.

I still get stressed out, emotional, weepy and low.

All I am trying to say is, all you are now feeling is normal. On TP there is no need to pretend. Take care of yourself, and post whenever you feel the need. There is always someone here.

I hope I haven`t spoken out of turn, but your post frightened me a bit, when I realized all the pressures you are under.

 

[Amy]

Hiya Gromit,
Just to say when I first joined TP I spent night after night crying over the keyboard- it's OK, you are normal, there will be friends here to support you.
Love Helen

 

[Gromit]

Thanks for your kind messages - big help

Thanks for all your messages. I'm relieved to be back on TP it really does help to vent my emotions and know that you understand where I am coming from.

Just got off the phone from Mum (we speak everyday - several times a day - Mum says it helps her to be able to talk to me so that's good because it helps me too). Dad seems to have realised he has AD today. He said to Mum this morning - "aren't we a right old pair, me with my alzheimers and your habit of talking to yourself!" (Mum often talks to herself - I do too!). So we have come a long way from Dad denying anything being wrong to now admitting he has AD. However, I get a lump in my throat knowing that Dad now knows - I can't even imagine how he must feel. He watched his Mum go through it and I know it worries him. I don't really remember much as I was four when Gran died - all I remember is a little old lady who didn't know who we were but loved boxes of chocolates! Strange the things that are coming back to me at the moment.

I visited Mum and Dad last week (that's when we got the diagnosis - I make sure I am with Mum for all of Dad's appointments) and I am thinking of going there again next week whilst I am still off work - make the most of it I think. However this weekend I am going to stay with a friend so hopefully that will cheer me up a bit. (My hubby is away with the boys this weekend - a break he no doubt needs too).

Both me and Mum are feeling a bit down today - unfortunately Mum doesn't know how to use a computer ( I have offered to teach her but to be honest she has so much on looking after Dad she doesn't think she will have time to learn) so I tell her about TP and what is on here - she is pleased I have somewhere to go to talk to people. I have told her if she has any questions I can ask them for her on TP.

Thanks again for your messages - its reassuring to know what I am feeling is to be expected and perhaps I'm not losing the plot. I think its just started to sink in with me this week and it feels a bit daunting and worrying - but Mum and I have each other and we have you and that is a great comfort.

Sending you all a big hug of thanks.
XXXXX

 

[Skye]

Hi Gromit

It would be good for your mum to join TP. I care for my husband, and it's so lonely sometimes. TP is a real lifeline.

She wouldn't really need to learn to use a computer -- just a laptop and a broadband connection. She could easily learn to connect to TP. I'm sure it would help her, and she might then have the confidence to want to do more.

In the meantime, you know you can print out threads for her? Just click on thread tools at the top of the page, then click printable version. You might get her interested that way.

It would be a good idea to visit again while you are off work. Your mum desperately needs to feel she's not alone. In the meantime, the phone calls are good.

You're doing fine.

Love,

 

[Kathleen]

Hello Gromit

Welcome back.

My Mum's Dad had AD too and she always said she would run under a bus if it happened to her, but when she was diagnosed in 2003, she just seemed to accept it. I think it was a relief to her to be told she had a specific illness, not "going mad" as she put it.

She has never mentioned that her Dad had it too, hopefully your Dad won't make the connection either.

Counselling is a good idea, someone suggested grief counselling, as the long process the whole family goes through is a gradual loss of the person we love. My sister found it really helpful after our Dad's death and it has also helped her come to terms, as far as anyone can, with Mum's illness.

Keep in touch.

Kathleen