WHY DO i FEEL SO ALONE

[TinaT]

This is the 2nd New Year's eve I have been completely alone. For quite a few years before this, my husband was with me but I still felt alone and isolated as each year a little more of him disappeared.

I visited him tonight at his EMI home and got him ready for bed. It was lovely to be with him for a few hours. He will be 67 tomorrow (New Year's Day) and I thank God for all the good New Years we have both had together.

I hang on to that - many people haven't even had that in their lives so I feel very lucky to have had all those years together.

xxTinaT

 

[Whiskas]

Hi
Can I join the lonely group. I'm definitely alone my Mum died in October I haven't been able to post about it. I wish she was here so I could give her a hug. As I can't give her a hug I'll send one to everyone else or I would if I could do the fancy stuff!!
Love and hugs to everyone
Cathyxx

 

[Norman]

I am with you all in thought.
This is the second New year since my Peg died,and I miss her more than ever.
We have all been robbed of some of what should have been our best years by this awful disease.
I wish that you could all find some peace, and that 2009 may be a better year for you all.
Norman
Norman

 

[Skye]

A big hug for everyone who is feeling lonely tonight.

Haze, Jan, Sylvia, Tina, Cathy, Norman, ...... and anyone else who wants to join in.

May 2009 bring some pleasure for each of us.

Love,

 

[TinaT]

Just posted this message on another thread but it applies to all our threads and all of us Tp members. I hope that you all find some happy moments in 2009. Take care and keep loving.

xxTinaT

 

[Margaret W]

Hi all

I just had to reply to say if I knew how to do those fantastic pictures, I would send you all one. I can't empathise with those of you with sick partners, my "problem" was my mum and it is surely different from a partner. I just wish you all a peaceful new year and the strength to cope with 2009.

Love to all of you

Margaret

 

[sad nell]

best wishes to all , wish i did not have the right qualifications to join this club but afraid i do, even dancing to elton has not taken away that feeling i promised to br in good spirits tonight but have failed miserably. i will go to bed with a smile on my face cause i promised my lovely daughter i would think of her and be happy
goodnight and hope you all find peace
pam

 

[susiesue]

Hi
I have just found TP (well actually my son directed me in the hope that I might feel less alone!). I have been reading the threads and realised that I am not that unusual! My husband (now 67 years - I am 61)was 'diagnosed' with Probable Early Onset Alzheimers nearly two years ago (although even now they are unable to make a definite diagnosis. It seems to have mainly affected his ability to talk and make himself understood. This has hit him so hard as he was a great communicator and was 'born to talk'. He tries very hard to continue to talk but unfortunately I am finding it harder and harder to understand him and vice versa - it feels rather like two foreigners living together. When I cannot understand what he is trying to say he blames me!

I am finding the situation almost intolerable and as one other letter said, my husband (when not talking!) falls asleep all the time. He is extremely bored all the time and as he can no longer read or write it is becoming increasingly difficult to find him stuff to do.

I realise that it is going to get worse and I am worried how I am going to cope if I am finding it so hard now! -He still manages to look after himself, but having no-one to talk to 24/7 is awful.

 

[Skye]

Dear susiesue, welcome to TP.

Your husband's symptoms sound exactly like my husband's. He was originally diagnosed with Alzheimer's when he was 66, and for a long time his main problem was loss of language. Eventually, because of this, the diagnosis was changed to PPA (Primary Progressive Aphasia) a rare form of dementia.

For me, the main problem was isolation as the disease progressed, as you have also found, it's difficult when there is no converstaion or verbal response.

I hope you will keep posting, there are a few of us caring for spouses with language problems, and it's good to support each other.

Only a consultant will be able to diagnose your husband, but you may find this information helpful:

http://www.brain.northwestern.edu/ppa/

 

[susiesue]

Hello Skye
Thanks for your reply. Yes, my husband too has been diagnosed with PPA but the hospital seem to think that probably this is due to Alzheimers, although it is not following the normal pattern. The hospital have more or less washed their hands of him and don't want to see him again, they say it is not possible to give a definite diagnosis of Alzheimers. We now just go to the local Memory Clinic every few months, do the same test and get a repeat prescription.

I never realised how important communication was until now.

Take Care

 

[Skye]

You're absolutely right, susiesue. They can only give an accurate diagnosis in postmortem, and there isn't any cure anyway.

But have you had an assessment from social services? I mean, you personally, as a carer?

With a diagnosis of PPA, it's important that you can get out and talk to people. I just about broke down before I had mine!

I was given four hours a week of Crossroads -- for me, not for John, so that I could get out and meet friends. It made such a difference to me.

Also, the Crossroads ladies were wonderful, and really worked on John's language with him.

If you haven't already done it, ring SS and say you need a carers assessment.

 

[Grannie G]

Hello susiesue

I`m glad you found Talkingg Point [TP] but so sorry your husband is a young onset sufferer and is losing his language.

I hope TP helps rlelieve your isolation, as much as it has for so many of us.

 

[susiesue]

Thanks, I will certainly give SS a ring. What exactly is Crossroads?

 

[Grannie G]

Hello Susiesue

Hope this link will help you.
http://www.crossroads.org.uk/

 

[susiesue]

Thank you very much - apparently there is a Crossroads quite close to where I live.

 

[sad nell]

susie welcome to TP and i hope it can help you has much as it as helped me cope and not feel os alone and overwhelmed by alzhiemers, I also find the lack of communication to be much worse than the practical problems would love to share some gossip and laugh with my husband , tp cannot replace that but it does ease the lonliness and a few laughs along the way, Isyour husband still mobile , i find dancing with trevor to be the nearest thing to communicate with him, he always was a good mover
best wishes to you and hubby pam

 

[sad nell]

hi again forgot to say that crossroads is well worth pursuing,
,very efficent well trained and trev enjoys the male company and i get a break without having to worry,because i know he will cope with trevs behaviour problems , so please give them a ring, you may need your social worker to assist but it is definatley worth it pam

 

[Helen33]

Dear Susiesue

My husband also has a fronto temperal lobe dementia which affects his language.

and get a repeat prescription.

I did note that you mentioned your husband was given a repeat prescription and I wondered whether this was for Alzheimers? I was told by our consultant that Alzheimers medication was dangerous for people with ftd and perhaps this is something you might want to query.

The consultant we saw suspected Alan has ftd from the start and he ordered a load of different scans which confirmed a fronto temperal lobe problem.

I do hope that you find Talking Point a source of support and help and will no doubt see you around the site.

Love and best wishes

 

[Skye]

Susiesue, you may find it better to contact SS first, some branches of Crossroads only work on contract to SS. Also if you are assessed as needcing it, you may find it is free. Again, it depends on area.

Helen, John was on AD meds from the day he was first diagnosed. When the diagnosis was changed, the consultant left him on them, as he was doing so well. He was on them for 7 years.

 

[susiesue]

Hello Sad Nell

Thanks for your reply. Yes, my husband is extremely mobile and gets about a lot - even on trains, now they have taken away his driving licence - that was a huge blow! To look at him he physically he has not changed at all and in all other respects he is very healthy. This makes it all the harder to cope with as outwardly he has not changed - except his personality. It is as if someone swapped him overnight for someone else who looks the same!
Thanks for your support.