a need to share

[gringo]

Jeannette,
I know how difficult it must have been for you to make your post.
As you must see from the responses, there is a universal feeling of admiration for you.
Whether any of us have been able to help you to a solution is another matter.
It’s such a personal thing. Only fools would rush in where angels fear to tread. I’m on the side of the angels here, for one of the few times in my life.

 

[Butter]

I love your intelligence. Everything you say makes complete sense to me.. Love and sex have always been such a tangle for us human beings. We can only do our best.


This is off topic and Jeanette, if you want it removed from your thread, I will do so at once: a while back I was mighty impressed by a hospice run by nuns: there was a young patient dying who had always been too disabled to manage sex. The nuns arranged for a professional masseuse who included sexual massage, to visit.

This caused uproar in some circles, but I think those circles were mistaken.

 

[rajahh]

No I do not want it removed Butter. it has reminded me of the time when I was helping at a disabled holiday camp. There were two people with cerebral palsy, quite severe, who had got married. There was great hilarity in their bedroom the first night and a manoevering of beds etc so they were close together.

All the helpers were involved and the couple were made to feel very special.

Jeannette

 

[garnuft]

My son had real problems with his sexual emergence.

In truth he needed/needs someone to show him and help him.

There were some issues (willy showing) during swimming changing time when he was without support that the school (he was 18) tried to bat back at him....
he won't be able to take part in swimming anymore if his behaviour continues.

With Peter's help, I went straight to the top and there was a 'sexual advisor' brought in.

All he did was tell him that some things are private but sex was good.

There was an article in The Daily Mail a few year back that brought down tons of derision on a social work team that facilitated a young man with learning difficulties visiting a sex worker.

For me it was the way forward,
to me it made sense.
But they had a ton of bricks dropped on them and the initiative ended before it was begun.

I am sad about that.
My son needs help with these issues.
Sex is part of life.

These things will be addressed but only if they're spoken about.

You are a very clever, wise woman Jeanette.
You know what's what.

 

[Big Effort]

Dear Jeanette,

I too found your post hard..... because I would love to be able to provide a comfortable solution, but sadly, I don't think there is a recipe for what to do.

This dratted dementia makes reasoning hard, and anyway anything one says is just as soon forgotten.

I would draw comfort from the fact that you are clearly doing an outstanding job and your husband fully knows this. His affection for you/his carer shines through, the trust, confidence, feelings of intimacy and connection are all there. I think he is showing he loves you, be you wife, carer, lady upstairs, chief cleaner and bottle-washer - he knows you are splendid, and he is expressing this. This is his tribute to a very special woman.

This must be very hard to cope with. And you reached out to the forum.... look at all the warm responses you got - yet more evidence of the esteem we all hold you in. Just reading them did me good!

Good night Jeanette. Hope fervently that things will cool down in the sex department. Big hugs, BE

 

[rajahh]

Once again I thank you all.

I am glad some of you feel I have helped you, I do feel relatively inexperienced in this dementia illness, and certainly amd not aware of CHs and social workers etc etc, but I do know about the emotional side of it.

Gwen I do smile when people say I am a wise woman. I feel very far from wise, I feel as though I stumble from one drama to another.

However this forum certainly supports, and I have been greatly encouraged by everyone's concern and love.

All is peaceful tonight, he asked me if I was on duty every day ad I said yes, he said you look after me very well so Big Effort you are right in what you say.

I have to hold onto the fact that he feels very safe and comfortable in my presence, which makes me feel very " good" inside.

Thank you all Love Jeannette

 

[rajahh]

An extra note to Gwen. I agree with you that there ought to be some help for people with disabilities to enjoy the sexual experience without embarassment, and without stigma.

Love Jeannette

 

[lotusflower]

Strength....

Thank you Jeannette for all your posts and for sharing your insights. You have great strength particularly as your husband has two very severe conditions and to cope with this must take great personal strength. I felt compelled to post to you my sincerest wishes to help you to continue caring and to give you the strength you need now.

I don’t have much time to post, but do read and learn loads from TP. When I have posted, you have always so kindly provided me with advice and reassurance which have really helped me. Your husband shares some similarities in his AD symptoms, which I have noticed in other posts you have made.

I agree this is a difficult subject and something I encounter.... My partner doesn’t always know me, although we have been together 27 years. Like you, sometimes Im the lady of the house (he thinks he is in a hotel).... the cook/washer-upper/cleaner and all, and sometimes not even a woman but a man, particularly if we go out in the car! And the rest of the time (fortunately still) for a few hours each day I am still me!

We still share intimacy and I would like this still to continue. This is a man I have loved for a long time – although he may not always be able to remember my name –or exactly who I am - he knows in his heart that I am someone who loves him and I know he loves me too. Like you I know my partner is an honourable man.

When you are “someone else” there are occasions where intimacy can feel very upsetting and confusing. I agree that when Im in turmoil - I find it best to withdraw. If your husband is like mine - he will not remember. But we do. And I endorse what you say it feels hurtful ....... and it could feel a bit like they have committed an act of adultery – except that is not the case. But this is comparing things perhaps with normal life and not a life lived with AD.

I think its sad that this disease changes the dynamic in the relationship and causes such inner conflicts. The move from partner/husband to carer. Im sorry that for you - some of the intimate moments you both would have enjoyed are becoming fraught.

Stay strong and keep posting when you feel up to it.

 

[21citrouilles]

Anyway he has now decided he quite fancies the new carer he has ( ME). He is leading up to somewhere I do not want to go!!

My husband would never have betrayed me, he knows how much that would hurt me as my first husband did just that. My husband is/was an honourable man .

Dear Jeanette,

I'm touched by your pain and discomfort and reflected a bit on what you wrote.

I want to reassure you that he's not betraying you. Being confused, he doesn't recognise you, and is confused too about his marital state. In that state he probably thinks that he's single, and feels an attachement to you (again).

Like somebody else mentionned, he's too weak to go much further with intimacy. If he can agree with you that both of you have a special bond, of frienship and tenderness, you won't need to stop showing your love by gestures of affection.

You too have helped me with your compassionate words.

 

[21citrouilles]

Anyway he has now decided he quite fancies the new carer he has ( ME). He is leading up to somewhere I do not want to go!!

My husband would never have betrayed me, he knows how much that would hurt me as my first husband did just that. My husband is/was an honourable man .


I have thought of saying that members of staff are not allowed to become too attached to the " patients" . Emotionally I feel I am at breaking point though, this is what I am finding it hard to deal with.

It is possible I have given him the wrong impression as sometimes when I am washing him and dressing him I do kiss his neck. It seems so awful not to be able to show signs of love to him.
Jeannette

I want to reassure you that he's not betraying you. Being confused, he doesn't recognise you, and is confused too about his marital state. In that state he probably thinks that he's single, and feels an attachement to you (again).

Like somebody else mentionned, he's too weak to go much further with intimacy. If he can agree with you that both of you have a special bond, of frienship and tenderness, you won't need to stop showing your love by gestures of affection.

You too have helped me with your compassionate words.

 

[Wolfsgirl]

I agree completely with Grannie, you could also say carers are now allowed to cuddle their clients as it is a form of therapy - it would help you both to experience affection which you must also miss. It does not have to be sexual, just comforting so don't feel guilty for giving him a bit of love which you are both entitled to!

x

Jeanette, you know who you are even if your husband is confused.
Please don`t feel the need to stop terms of endearment or kisses, he needs them so much.
I have been in the same or similar position and even though I know Dhiren has confusion about my status, I know who I am even when he doesn`t.

And even if he does fancy the new carer [you] it is doubtful he would have the physical or emotional strength to take it further.

 

[rajahh]

Move to new forum please

Is it possible for this thread to be moved to I care for a partner please.

I had reason to go back and read it this morning and found such peace from all the comments and encouragements.

I was also surprised at how far I have moved on from that despair, ok I have new despairs, but the fact that this particular despair has been well and truly dealt with gives me courage to face the next ones too.

I would also like to cope this and print it, does anyone know if this is possible . If they do could they explain to me in step by step directions please.

Jeannette

 

[SerenaS]

Hello Jeannette,

I've moved your discussion to the forum for people caring for a partner with dementia.

To print the discussion, if you click where you see 'Thread tools' at the top, you can click on 'show printable version'.

When you are looking at the printable version and you are on a browser like Chrome or Internet Explorer, you should be able to click on the right button on your mouse. You should see a list of options including 'Print'.

Hope this helps (please PM me if you have questions)

 

[rajahh]

thank you Serena. for moving the thread and I have managed to print the thread out too.

Jeannette