Update on Alan

[Helen33]

Alan's chest has been a bit bubbly at night and although the prescribing nurse checked him a couple of weeks ago and gave the all clear, I felt it was time for another check up. When we got to the surgery, we were given a side room as Alan wouldn't have been able to cope with the amount of people waiting in the waiting room.

I asked the GP to check his chest and also his leg for phlebitis.
She said he had a presence in the lower part of his lung and also that the phlebitis was still present although in another part of his leg. She has prescribed a dual antibiotic which should deal with both problems at the same time. She stressed that if the chest wasn't completely clear within a week, then I was to return with Alan as he would need a chest X-ray.

I am a little worried but he seems ok in himself.

Nearly forgot to say that the GP asked whether I got sufficient help in caring for Alan and I told her that I worked from home and used Crossroads sitters. She said "you do get respite don't you?" and I assured her that I did. This really touched me deeply because on the one hand I was pleased that she saw how important proper support for carers was and on the other hand I was hurt by what she must be seeing in Alan that I don't see. He was fairly fine this morning and I dread to think what she would think if she saw him at night when he is most confused!!!

Love to you all

 

[Canadian Joanne]

She said "you do get respite don't you?" and I assured her that I did. This really touched me deeply because on the one hand I was pleased that she saw how important proper support for carers was and on the other hand I was hurt by what she must be seeing in Alan that I don't see.

Helen, I don't think she was seeing anything in Alan. I suspect she saw what excellent care you give him and realized how exhausting and difficult it must be. It's more a compliment to you than anything else, in my opinion.

Give yourself a pat on the back.

 

[Helen33]

Hello Joanne, Do you really think so? Your reply has brought tears to my eyes - I never even considered this.

Love

 

[Grannie G]

Oh Helen, I know just how you felt.
Joanne may well be right, but the first thing we assume is others are shocked by what we live with from day to day, seeing it with new eyes.
Love xx

 

[gigi]

Hope the antbiotics nip things in the bud, Helen.

To be honest I'm always surprised when I'm asked if we have enough support at home..I'm never quite sure how to take it. It depends on the mood I'm in at the time, I think...

Whatever the reason for asking, it's good that the question is asked.

Love xx

 

[Norrms]

Hope all ok

hello my good friend, hope the antibiotics do their job and Alan is better soon, you do a wonderful job, best wishes, Norrms and family xxxxxxxxxxxxx

 

[donkey]

hi helen so glad allan has his antibiotics and strangly enough i told the doc yesterday that i thought my chest is bubbling specialy at night its just the build up of mucas and ph... sorry hate that word so dont worry yourself and i think joanne is right you do need a pat on the back its nice when the doctor takes time to think of you and not just allan xx

 

[Sam Iam]

Helen and Silvia,
please dont let the guilt monster win, you are both doing an excellant job in caring for your husbands and I am more than sure if your are asked about respite etc it is only through concern for your health as a carer and keeping you both fit and well.

 

[Helen33]

Hi Sam,

I don't have too much trouble with 'guilt' - not yet anyway It's seeing the situation from other people's perspectives that seems to shock me. I mostly hear "how long do you think you can cope?" or "I don't know how you cope" or "doesn't it drive you crazy?" and I usually feel annoyed and often say "I don't 'cope' with Alan, I 'live' with him". I just wish people could see and experience what I see and experience. The sitters do because they spend more time with him and if they don't, they have to go

Love

 

[Sam Iam]

Helen,
I suppose people dont see our loved ones with the same eyes as we do. We can see the person we love having difficulties with daily living and they can see a condition that scares them.
xxx

 

[hazytron]

Helen, I don't think she was seeing anything in Alan. I suspect she saw what excellent care you give him and realized how exhausting and difficult it must be. It's more a compliment to you than anything else, in my opinion.

Give yourself a pat on the back.

Helen, I am with Joanne with this one, even before I read any replies that was my thought on the matter.
What a lovely caring doctor to ask if you are managing ok.

Hope I have helped to pick you up the way you do me.

Love Hazel

 

[Winnie Kjaer]

Hello Helen I am with Joanne too, but I know exactly what you mean, even though it does happen the other way round as well, because our other half look so well most of the time people will often say "you are still working aren't you" I use to work 85 hours plus a week so I hardly think so. They know I used to be a workaholic so they will then say as you quoted "how do you stand it" I always answer it is MY HUSBAND we are talking about, I can't help it, it makes me so cross.
You sure are lucky to have such a thoughtful doctor. Take care

 

[Helen33]

Hope I have helped to pick you up the way you do me.

I really do appreciate the responses and support. I don't know why but I have come back home and feel quite vulnerable. I think the experience has made me realise how little time I have in the world so to speak because of managing the paranoia and keeping Alan off medication that when I am then met with the response of the world, it's a shock.

Just being able to talk about my experience and hearing your responses is like finding myself again. It's like I need to find equilibrium again.

The GP we saw, we've never seen before. We hardly ever visit the surgery anyway because we don't often have the need. I do think it was very good of her to realise that carers have needs.

I talk so often about Talking Point being a lifeline to me and this is a good example of being a lifeline. I often come across as strong and confident but there are times, like today, when I feel vulnerable and unsure of myself.

Come to think of it, I have things piling up on me again. I've only just realised. My sister has several events that I have to attend. We've been invited to a do Alan's son is holding on Saturday evening (we won't be going because I can't stand him and Alan definitely wouldn't be able to cope with the throng) but it is pressure nonetheless. Christmas is coming fast and I haven't bought a thing.

Love and thanks

 

[BeckyJan]

Hello Helen:
I remember meeting you both and realising how you cope so wonderfully with a very difficult situation.

You do deserve a

a pat on the back

__________________

I am glad you have such a caring doctor. Sadly in this part of the world if the answer had been 'no' - there would be no back up or support available!!

I love to see so many tpers getting wonderful help and advice and recognise they should be used as fine examples of how suppport services should operate. It seems to be back to the postcode lottery thing and allocation of funding.

Sorry, Helen - going off on a tangent.

I do hope the antibiotics work soon for Alan.
Take care Love Jan

 

[julie_truro]

caring doctor

Dear Helen
I am sure your doctor was thinking of you and was recognising how hard it is to be a carer. You are doing a very good job and obviously care very deeply.
Julie

 

[julie_truro]

about Christmas

At Christmas just think about the important things, like you and Alan, and the rest can sort themselves out. Can someone else sort the really necessary things out so you can have a rest?

 

[donkey]

hi helen i hope you are feeling a bit stronger now . its only when people remind us of our caring role that we do become vunerable. if im having a bad day someone only has to saysomething nice and it sets me off its like im not worthy of having any nice compliments made. we may all be different people on the outside but we all want others to see that we are all the same on the inside and we are not just carers................... on a different not ive been so fed up latley that ive put my christmas tree :up and had a glass of baileys. i no its early but we all needed cheering up and i think its worked . will post a pic and hopefully cheer everyone up on tp xxx

 

[Helen33]

Thanks Jan, Julie and Lyn

I think even changing the pattern of years of being hostess at Christmas is stressful in itself. However, I have definitely decided that Alan and I will go and stay with my daughter and her partner and his parents at Christmas. I stayed there at my last respite and we all got on very well and they all really want us to come up. I'm sure I will manage to find some presents some how even if I have to shop online!!

Lyn, oh yes do post a picture of the tree Are you feeling properly recovered yet and are you still off work?

Love

 

[Grannie G]

Dear Helen

So many of us manage very difficult situations and grow into the role of carer, adapting out lives when changes make it necessary.

Many of my friends and family outside dementia have said `I don`t know how you do it` and `How much longer do you think you can continue` and I say I`m only doing what all other carers are doing, just getting on with it.

But then someone says something, or I see shock on a face, or something happens, which touches a nerve. I then realize how much I don`t think about the way I live in comparison to those living `normal` lives, I only think about the way we live in comparison to those living with dementia.

And then I feel vulnerable.

I was upset yesterday taking delivery of so much equipment. It was a comparison with normality instead of a comparison with dementia. I don`t think any of us realize what a strain it is keeping going until something happens which makes us more aware of the insulated and isolated way we live.

 

[sad nell]

Sylvia could not have put it better, when people come into my lounge for the first time ,they are surprised by all the equipment, but this is what it takes to make our lives managable and i do not even think about it now, just glad to have it all, but have noticed the shock on peoples faces when what once was a very attractive victorian lounge resembles a hospital room, but it really does not bother me now, because i know the only other alternative, hope dirhen gets on with all his new gear..Helen show lovely you are staying at your daughters for Christmas, Sure you will come up with great pressie ideas, just bought gift bags today , i love them & cannot wait to fill them, it gives me so much pleasure to make them look exciting, not gone subtle this year, bright red and fur but what the heck its christmas.. love pam