This Is Me

[helen.tomlinson]

Yesterday we were visited by the lady from the Alzheimers Society. We talked about my husband's needs and generally the things that have happened since our last meeting. Many things had happened. We had been visited by the Social Worker for an assessment so that Alan's needs can be met whilst I'm on holiday. I talked about how not getting the promised phone call from Social Services following the assessment, meant that it undermines trust that they will deliver what they say. If one can't keep to the promise of a phone call, how much more difficult will it be to deliver a service??!! I appreciate how busy and probably overstretched the Service is but we are all overstretched. I was able to use this time to share my experiences, positive and negative, and gaining from it the wonderful experience of being valued and heard.

Then Alan kind of said "This is me". Somehow he was able to share his frustration of not being spoken to clearly about the results of his scans and tests. He started to talk about how different it was for him when he had a hernia operation because the doctor and nurses spoke to him and included him. How he could see the results of what they did. Alan was saying he was angry that the doctors who arranged for tests and scans, didn't arrange specifically to see him to speak to him about the results. It was then that I realised that Alan can't move on until this happens.

Having this time with the 'lady from the Alzheimers Society' proved invaluable because Alan was able to be given the space and time to say "This is me".

He was also able to say that "I am physicaly fit, I have interests, I am a person". He actually managed to say that in the time we had. He said he didn't want the problems to be the sole focus of attention. He managed to say "Why don't they say - wow don't you do well".

 

[Kate P]

Helen,

How good that you got to put your view forward and be heard. My dad's big bear is also that SS and CPN never ring him when they say they will. It does dent the trust that they will deliver what they promise.

How very poignant that Alan expressed his need to be heard and included also.

I will say that our consultant and SW etc do speak directly to mum in some respects (even though she has no clue what they're saying and doesn't want to speak to them) but as soon as it comes to decision making they speak to dad only.

To be fair there is no point in speaking to my mum but from what you and Alan have said I wonder if this is a big issue with many demetia sufferers - that they feel excluded and ignored?

It must be so frustrating especially if like Alan they want to know and be included.

I can't imagine how annoying it must be for him, it annoys me when financial people always speak to my hubby first - he doesn't even know who are mortgage is with!!!!

 

[helen.tomlinson]

Hello KateP

I think that that meeting yesterday was one of those special times that one doesn't get that often. It wasn't until finding this forum that I realised just how much I have bottled up because there's no one that is interested or has the time and experience to listen. At least I can access this forum, Alan can't. He must keep it bottled up but then there are moments like yesterday. Actually, everything 'the lady from the Alz.Soc.' has come, we've had these moments.

I feel like a bowl of spaghetti sometimes, all ravelled up. Talking about things helps to unravel things a bit at a time.

I heard Alan yesterday but I don't think anyone else could have understood what he was saying. It was nice to have someone else there to witness it - so to speak. Really she facilitated it just by being there and making it clear that she was there for him.

I find the roles really difficult. Like understanding Alan's needs and finding time to understand my own and sometimes needing to fight for my own survival in all of this. I can't be understanding all the time. I can't listen so carefully all the time. I am a counsellor so my job is listening and sometimes I miss being able to put it all to one side and be selfish. This is where I think this forum will help me. I think I will be able to be just myself.

Thanks for listening KateP and you will probably recognise the signs that I'm a new member by me rambling on about myself. When I get accustomed to the forum and have some of these things said (out of my system), I will be able to concentrate on you all.

 

[Kate P]

I'm glad you've found TP Helen. It's been a god send to me - I felt like sometimes I was going completely mad but since I found TP, as you say, you can get out those thoughts and feelings to people who truly understand and who don't judge.

I wouldn't worry about feeling like you're rambling - I'd bet 50% of my stuff on here is about my problems and 50% trying to help other people - I think it's the way of it. (When I started I'll bet I was 100% on my stuff!!)

I think that this is the hardest disease to deal with. As you say it is so hard to find a balance between caring for your loved one and trying to keep some sense of balance in your life. I know my dad struggles terribly with it. He's torn between wanting to care for mum but still wanting to live - he's only a young 62 after all.

From a "childs" perspective I feel conflicted - my mum cannot help how she is and there is a part of me that still sees her as "my mum" and wants her to be happy and I hate the thought of her ever being in an assessment ward or a home but then I also feel for my dad who is so stressed out and whose retirement plans have all gone down the pan and he's a good man and he doesn't deserve that.

See now I'm rambling too!!

Can I ask do you have children/friends/family/carers who can help you and give you time to yourself?

 

[Grannie G]

Dear Helen,

It is only by `rambling on` about ourselves, that we have any chance of getting to know each other, so ramble away.

It was wonderful for your husband to have the opportunity to talk about himself yesterday, but what was even more wonderful was his insight into his own condition, and that he wanted to talk about himself.

My husband refuses to talk about his condition to anyone but me, so he has no other outlet. He accepts he has Alzheimers, but on good days believes he is cured. Even when we see the consultant, he is self-conscious, embarrassed and would prefer to dig a hole to hide in, rather than discuss his difficulties.

I hope now you have found Talking Point [TP] you will feel the support so many members are able to offer.

Love xx

 

[Skye]

Hi Helen

I'm glad you had such a good session with the lady from AS. It makes all the difference to be able to talk to someone who understands. Great for your husband too, that he felt included. That makes such a difference. So often the 'me' becomes just part of the background, and I find that so insulting.

Don't worry about 'rambling'. When people first join TP (and I'm including myself in this), it's usually because they need advice with a specific problem, or because everything has just got too much to handle. TPers are wonderful, they always support.

But it's only when you get beyond that crisis point and things are on a more even keel that you can begin to focus on other members' problems. There's absolutely no hurry for that to happen. We're just glad to have you among us.

Love,