a need to share

[rajahh]

I am facing a difficult period at the moment, and just need to reach out and share.

My husband is terminally ill with prostate cancer but still able to walk about with a frame and not in any pain.

He also has AD reasonably advanced now, and is incontinent.

He has not really known me for a long time now, but is still aware tht Jeannette lives here somewhere, generally upstairs ( although we live in a bungalow). He knows he is married to Jeannette most of the time, but sometimes thinks he is married still to his first wife although he knows they have split up!!!

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 am finding now I am only relaxed when he is asleep or when I am out.

I need the strength from somewhere and the ability to divert him.

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.

This morning I have to bath him and I do wonder what will happen then.

Don't know what I am asking for really, but just needed to share with people who might have some understanding and empathy.

Jeannette

 

[DeborahBlythe]

Dear Jeannette, I'm so sorry to read your post. I can't imagine a worse situation than the one you describe. You must be so full of conflicting feelings, wanting to show tenderness to your husband but fearing where it will lead and wondering who he thinks you are. I just have no words to help you, but I want you to know that I feel your sadness and wish I could offer more than sympathy.

Is it possible to get carers in to give him the personal care, or would that make things worse?

Sending you hugs and kind regards from Deborah

 

[at wits end]

Jeanette I have no words to offer you as I have never experienced what you are going through. But i wanted to say you are in my thoughts.

You're a strong lady and will figure this out with some help.

x

 

[PeggySmith]

Hi Rajahh,

I read your post and just felt for you, I hope that someone who is a professional carer comes along with tips to help. Dementia really takes everything, doesn't it?

 

[jan.s]

Dear Jeannette

I don't have anything useful to add, but wanted you to know that i'm thinking of you.

Is it maybe possible that he feels close to you, the carer, because he understands that it is you who cares. He may not be able to put a name to you, but he knows you care.

Just thoughts. I haven't expressed it very well, but i hope it makes some sense.

Jan x

 

[meme]

he is responding to YOU..no matter the name. I just want to send a hug as I can only imagine how painfull this is for you. Is it in any way his physical need that has no release found at the moment that needs a solution ? or does he need distracting...

 

[Helen33]

Dear Jeanette,

I do hope that you find it a release to be able to share and let out something of what you are experiencing. Sometiimes just letting it out helps.

I do hope that you find your way around this as it is really horrible for you not being able to relax properly.

Love

 

[Grannie G]

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.

 

[Hair Twiddler]

Oh Jeannette,

I have no experience or understanding of what you must be feeling but I can sure feel your pain.

Could you try saying " I really like you but not in that way"?
I know that this sounds a bit mad too but could you put the radio on at "stressful" times perhaps if your husband hears conversation & chatter in the background he will be less inclined to make suggestions?
I'm so sorry if I've said or made a stupid comment which has upset you.
- Twiddler x

 

[rajahh]

Thank you for all the replies.

Hair Twiddler you have not offended me in any way. you have all tried to help, and I do feel supported byu you all.

Yes it has helped writing it down, I knew it would but still hesitated. It is silly really.

We cannot really have carers in as I allow him to get up when he feels like it. As he has terminal cancer his body is getting tireder so he sleeps longer. This morning he has only just got up within the last 20 minutes.

Carers would need a set time and this is just not on.

It is possible this " need" is the last spark of him before he really becomes bed bound due to the cancer.

The Macmillan nurse expects him to be less and less active as the days go by now and it is proving to be the case.

As for Me knowing I am ME, I agree Sylvia, but he has just said to me " you don't know me very well yet so you do not understand my needs".

I really cannot go beyond the fact that he does not know ME.

Normally by now he has had his weekly bath, I do not know if we shall manage that today or not. He is in clean pyjamas at the present so he can have his breakfast.

Not sure when lunch will be.

Once again thank you all.

I often feel I do not respond to others enough and yet as soon as I have a problem so many of you respond to me.

Thank you

Love Jeannette

 

[Grannie G]

As for Me knowing I am ME, I agree Sylvia, but he has just said to me " you don't know me very well yet so you do not understand my needs".

So sad Jeanette. xx

 

[DeborahBlythe]

I often feel I do not respond to others enough

Please do not think like this Jeannette. People respond when they can, and no one is counting. You have a heavy load to bear right now. Perfectly fine to reach out. That is what TP is for. xx

 

[Dazmum]

When you do respond Jeanette, your words and always kind, wise and understanding, please be kind to yourself, you are really appreciated here xxxx

 

[CollegeGirl]

You have certainly helped me in the past Jeanette thank you.

 

[Helen33]

Hi Jeanette,

I've noticed you around offering your wonderful support to many as and when you can You are a lovely, valued member and I hope you feel appreciated.

I am glad it has helped to let it out and I am sure you will find your way through this Jeanette. You did suggest in your original post that you might say something like "it is not allowed .............." and if this feels right at the time, perhaps you might try it. I know it could be confusing if you are intimate with your kisses but I am sure you know your husband best and will choose the moments that feel right to you.

Love and a (HUG)

 

[stanleypj]

Hi Jeanette,

Just wanted to thank you for sharing such an intimate dilemma. I'm sure that there are all sorts of related issues that people would like to be able to discuss. It may be that you have enabled them to think about posting.

I think it's wonderful that you are able to show your love for him by giving him a kiss.

I understand what you are saying about where he might be thinking things will lead. The idea of saying that you as a carer are not allowed to go there is a very good one. It seems unlikely that he will be capable of challenging this by remembering and mentioning your brief kisses.

This is just one more heart-wrenching example of the awful challenges this disease puts in our way.

I do hope you are able to work it out in a way that you are comfortable with. And that you are able to continue to show your love and affection for him as a person.

Take care

 

[garnuft]

Jeanette you have helped me countless times.
Words of support, wisdom and encouragement.
I have seen how much support you give to other members too.

I wish I could be of some use to you.

I have nothing to offer other than admiration for your bravery in voicing your struggles,
as Stanley says, I feel sure it will encourage other's, if not to post, to at least feel less isolated by knowing others are encountering the same difficulties.

For me it further demonstrates how Dementia is more devastating when it is your partner who is stricken.

Your candour is very valuable,
but your kind heart and good sense are priceless.

I hope the day has gone a little easier for you.
Much love and respect,

Gwen XXX

 

[Izzy]

I can only add my admiration as well Jeanette. I haven't experienced similar problems in my situation so I can't advise. Just wishing you well. X

 

[Shash7677]

I really have no idea what to say but wanted to respond. I had a little year as I read both of your posts and as said previously, I really do admire you, even more so now.

We may not agree on cleaning ;-) but I really do wish you all the best, the situation must be so difficult and I don't think I could deal with it as well or as strongly as you are.

Sharon

 

[PeggySmith]

Rajahh,

You've helped me a lot as well. Oh, and we do agree about housework