Counselling for partners?

[sallyanddon]

My husband has early-onset dementia which I am told has a fronto-temporal element, plus he has PTSD from his lifetime work - so altogether it has made for a difficult situation, with episodes of very scary aggression amongst other things. Last year it was decided that the risk to my safety had become too great and he is now in residential care - thankfully at a wonderful early-onset unit that we had to fight tooth and nail to get him into and properly funded, and we are not yet totally out of the woods with that one. And along this road we have lost our house and most of our financial means, so I am left with large debts.
I have coped OK to date but am realising that I am only just surviving emotionally, and I feel I need some expert counselling to help me sort out all the whole miasma of feeling - guilt, anger, desperation and all the rest ........ does anyone know if there are any trained professionals working in this area? All I can find or have been offered are various carers support group, which is not what I need at this stage!
(I live in Essex but work in London 3 days a week)
Thanks
"sallyanddon"

 

[Christin]

Hello Sally and welcome to Talking Point. I am so sorry to read your post, you are having a difficult time.

Can I suggest is that you speak to your GP, a second time if you have already done so. I believe counselling is available on the NHS, but the waiting lists can be very long.

In the meantime many members find it helpful to post on TP, I am sure you will receive a lot of support from others here. Many will understand what you are going through.

With regard to the finances, have you had a proper financial assessment, it doesn't sound right that you are left in debt, I am sure someone will come along later with more experience.

Sending you very best wishes, please let us know how you get on.

 

[small]

Hi Sally, I am afraid I have no info to help but hope someone comes along soon to help you in what sounds like a dreadful situation.

my problems are not nearly so extreme but to be honest, I'd love some counselling specific to our problems. My husband also has early onset, and the first signs of it were personality changes such as callousness verging on cruelty and verbal aggression.

I've just been in hosp for prolapse repair. Complications led to blood loss and weakness, and the responsibility of needing to care for me just about sent my husband into decline, he refused to help and the verbal aggression was so hard to cope with in my weakened state, that my son drove straight down to collect me and brought me to my sister's for tlc. My friend is looking after my husband meanwhile.

The conflict of emotions you describe is almost crippling, espec on top of any other probs that life throws up for all of us.

I do hope you get the help you need, and also I really feel for your situation. You have obviously been through a very difficult time, and deserve a bit of a helping hand. all my love and support .

Jackiexx

 

[sallyanddon]

Hi Christin
Thanks to both for your swift responses .... I had thought about the GP route but the time it takes to get referred is daunting ....... but I will ask.
We read Talking Point when Don was first diagnosed and found it enormously helpful but at that stage we did not foresee what lay ahead.....
As for the finances, its a long and complicated story - which could have been eased if Don's first visit to his GP in 2006, worried about his memory etc, had not resulted in being told to "read a book" ....... ! Then PTSD was diagnosed in 2007 so we always thought things would improve and he would be able to work again, so it wasn't until 2009 that dementia was properly diagnosed. So our finances went into free fall ........ not helped by the property market crash in USA where we were living ..... so we came home last year. But I did manage to get most of his debts written off - National Debtline were brilliant! - but I am left holding the aftermath!
And it seems I am embroiled in a constant mess of Social Services and NHS teams that do not communicate with each other unless I raise hell!!
Good to have got all that off my chest thanks for "listening"!

 

[Harriet66]

Hi Sally - Dealing with financial pressures when you need all your strength to cope with this disease is crippling. You mentioned that your husband has PTSD from his lifetimes work. If he was in the British Armed Forces at any time, he'll be entitled to help/advice and possible funding via the British Legion. They could also sort out counselling for you.
This may not be applicable to you, you sound like you've explored many avenues already, but I hope it helps.

Best wishes,
Harriet x

 

[sistermillicent]

I have sent you a private message with a place I know of in Chelmsford. If you want to see someone in London for free there is free counselling in picadilly,

http://www.thecaravan.org.uk/index.html

I hope I am allowed to post that here, it is staffed by volunteers, so I thought it would be okay.

If the website isn't displayed contact me and I will private message you again

Pippa

 

[Helen33]

Welcome to Talking Point. You might want to contact the British Counselling and Psychotherapy Association and inform them of your situation. They have a comprehensive register of qualified therapists throughout the land. I benefitted from an excellent therapist provided by The Hospice which was free and open ended. It may be worthwhile asking whether you may qualify for such a service. If not, then perhaps it might be possible to negotiate using the services of one of their therapists for a donation towards the cause!! You never know until you ask.

Because of some of the enormity of the difficulties that can arise from such an illness (particularly at a young age) it may be beneficial to try to find numerous sources of support. I had great benefit from a woman from my local branch of the Alzheimers Society, an excellent Community Psychiatric Nurse, Talking Point and after my husband's demise, the services of a Hospice therapist.

I do wish you well in finding support and hopefully you will be able to share with us what you come up with.

Love

 

[briana]

morning

hi sally
I feel for you and the part about counselling sound good if only! my hubby has ftd also and has the rages/outbursts i suppose we were lucky in the fact the various medical proffesionals were involved at an early stage through c having a crisis,, it was really bad at the time but now he,s on all sort of medication a now does seem to be stable at the minute,,,, but as carers of people with ftd it can change at a seconds notice, i have started to suffer with terrible anxiety and finding it very difficult to come to terms with,, i have a as support worker who calls to see me, and i try to talk candidley but i always find myself holding back ,, its as if i feel like im betraying c by talking about our problems!!!! ive always been a private person and friens/family always come to me for advise and now im the one in need and have no idea where to turn,,, but i do find tp a good place to let of steam and air problems i hope you find it as helpful we,r all in the same situation and im sure will try to help anyway i can,,, take care bb

 

[Dolly27]

Morning Sally , and everyone else in these awful situations. I am not sure wether anything I add can be beneficial....is there a counsellor attatched to the memory clinic team that your husband is under ??? Also have you tried contacting your local citizens advice team ?? Can't begin to imagine how this is for you , on top of dealing with your husbands illness , you also have to cope with the financial mess too......I am 53 and have just been diagnosed with early dementia, am on long term sick leave and it's certain I will have to take early ill health retirement.( I am the main breadwinner)......so yes the financial repercussions when diagnosed at such an early age are enormous .my very best wishes to you Sally, and I really hope you are able to find the support and practical help you so need xxx

 

[Winnie Kjaer]

Counselling

My husband has early-onset dementia which I am told has a fronto-temporal element, plus he has PTSD from his lifetime work - so altogether it has made for a difficult situation, with episodes of very scary aggression amongst other things. Last year it was decided that the risk to my safety had become too great and he is now in residential care - thankfully at a wonderful early-onset unit that we had to fight tooth and nail to get him into and properly funded, and we are not yet totally out of the woods with that one. And along this road we have lost our house and most of our financial means, so I am left with large debts.
I have coped OK to date but am realising that I am only just surviving emotionally, and I feel I need some expert counselling to help me sort out all the whole miasma of feeling - guilt, anger, desperation and all the rest ........ does anyone know if there are any trained professionals working in this area? All I can find or have been offered are various carers support group, which is not what I need at this stage!
(I live in Essex but work in London 3 days a week)
Thanks
"sallyanddon"

Dear sally,
So sorry to read about your sad circumstances. Carers UK offers free ongoing counselling to carers. Freephone: 0808 801 0878. I have found them to be incredibly supportive and totally understanding in EVERY way.

Hope you manage to get sorted quickly I only had to wait 2 weeks.

Very best wishes