Sympathy needed

[BeckyJan]

I'd be lost without you wouldn't I

Hi Rosalind,

I could have written that myself! I snapped and swore at my husband last night because he wound me up and he had fiddled around with my computer - my lifeline - and something had gone wrong but somehow I've fixed it. No idea how! He and I haven't had the most wonderful marriage in the world, far from it, he was very active, hobbies and work, ALL the time, hardly anytime at home and now he is here ALL the time and relies on me and although I hate to say it, I get angry about it. He's had his life and I've sat at home for all those years waiting for him and now he has this awful AD and I think, I'm 53, what about me now but, you can't think like that, you have to get on with it don't you and take what life throws at you. He is very happy and very forgetful and can't do the most simple things - sometimes - and this morning told me "I'd be lost without you wouldn't I".

What can you do or say, just have to get on with it. He's not bad at all at the moment compared to some people I've read about on TP so, we are quite lucky really for now.

Love Twink/Sue

I feel for you as maybe my husband was similar - not home much and now I can hardly move without him wondering where and what I am doing. However we are older and for that in a way we have to be thankful. For consolation a friend said there is life after Alzheimers - maybe different, but there is.
My husband said after a difficult morning (especially with mobility problems as well) - what do people do if they haven't got a Jan? - I think that was a compliment. Keep your chin up - we are in a very large group of similar sufferers and not as isolated as you might think. BeckyJan

 

[twink]

lost without you

Thanks BeckyJan,

I did actually feel very alone when Steve was diagnosed in August, I don't know anyone much here where we live and had no idea if there were other people around with AD or caring for someone with it and I went onto Google and found TP which really has been brilliant. Apart from housework, I'm usually to be found on my computer. I have also joined a support group for carers and a coupleof the women are around my age (50's) and the support worker is 57 and a real helpful lady and a good laugh too.

I got used to not having Steve around and now, as I said, he is here all the time. If I'm upstairs he will shout "where are you love" and I do snap sometimes which maybe I shouldn't but we can't all be in a good mood oursevles every single day can we?

He's got mobility problems in a way too with the rheumatoid arthritis so I'm now decorating which I have never done before!!! He was the DIY man,a carpenter/plasterer by trade, could do any job at all. I'm painting the old bathroom tiles white but got quite a bit on me and the floor and the bathroom suite too!!!

It IS great to have all you nice people to chat to and to know there are others out there in the same boat.

Twink/Sue

 

[Rosalind]

Isn't it a pity we are all so spread out across the country, as otherwise we would have the basis of a very sound sisterhood, ladies' lunch society, drinking club or whatever.

I have to say I find my outings with girl friends vital, whether it is just a trip to a garden centre, or an occasional lunch.

 

[Lynne]

Ooooh, don't forget the men here Rosalind, they are too special to leave out!

 

[twink]

trip out

Rosalind, wouldn't that be great! I miss that, when we lived in Hertfordshire some friends and I used to go for a meal and have a good chat. The younger ones were Mums and I was a childminder so we usually talked about children even though we said we wouldn't! I don't know anyone here really but I did join a carers group and the ladies are all quite a lot older than me, apart from 2 of them, but they are a good laugh and all have husbands or parents with AD worse than Steve. We went to a garden centre a few weeks ago and it was heaven for me to be able to get out. Of course we did end up having lunch and discussing our husbands AD but at least I was away from these four walls with different people to talk to!!!

Love Twink/Sue

 

[twink]

bad cold

Hi Janice,

I'm still finding my way around this TP so missed your post before, sorry! Hope your cold is much better soon.

Steve was the same as your husband, he could do ANY job, he really was great but now he can't do anything hardly. I need a couple of shelves putting up so I am going to ask him if he can do them for me, he's not done anything like that for ages so I wonder if he still can but I hope he isn't upset if he can't. You don't know what to do for the best do you? I have no idea what he was trying to do under the desks with the computer leads last night but it was mine he messed up and not his own which he doesn't even use anymore. He can't spell anymore and can't concentrate on anything. I knew he was in the computer room as it's just off the lounge but you don't feel you can rush in and say "what are you doing?!" all the time like they are children.

I get so resentful and stroppy with him yet like you, I know it's not his fault and he wouldn't WANT to be like this. I personally don't think it's awful wanting to be away from him sometimes, I never saw Steve when he was well and now he's always here and I can't go out anywhere but, it's new so I know I will get used to all this.

Twink/Sue

 

[Norman]

Girls
it isn't only the women who have the problems that you describe,men's are similar.
I have looked after my wife now for 7 years and it does not get any better.
In fact it is becoming worse.
Every evening now the "going home" is worse and continues until bed time.
The paper tissue situation is worse I spend hours throughout the day picking up bits paper.
At the moment I am on a very short fuse and tonight when I said we are home she called me a liar.
I shouted and swore at here but I should know better you cannot win,and she asked what have I done?
Getting undressed for bed I was trying to hurry her along and she asked me why am I so cruel to her?
I retired to my PC room and am still here,she will be asleep by now.
This is a real day by day and tomorrow will be better

PS Thank you Lynne for thinking about the boys!!!
Norman.

 

[twink]

getting annoyed

Hi Norman,

I suppose it's the same for us girls and you boys, doesn't make any difference was sex we are does it, we all have the same problems, some much worse than others. I just cannot imagine looking after someone with AD for all those years and some longer than you, I know. It's been such a short time since Steve was diagnosed (August this year) so I guess we will have a few years of it, that's what I struggle to come to terms with, we just don't know how long do we? I like to kow what is going to happen and when (ish) but they keep telling me you just do not ever know with this illness.

Your post makes me feel sad, I hope you feel better tomorrow.

Twink/Sue

 

[Izzy]

This is all so familiar -talk about sleeping for England - we're into sleeping for Scotland! I'm not at all sure how much sleeping is done through the day as I work but in the evening Bill sleeps at the drop of a hat and still sleeps throughout the night. He is also on aricept - maybe it's that.

Wish I could sleep for Scotland too!!!!!
Izzy

 

[Brucie]

Hi Norman
I hope things will become a bit easier for you - as you know these things go in cycles, and all we can do is hope for some better days occasionally.

Seems like this time of year is not good, with darkness for more of the time and therefore increased sundowning, also all the false gaiety on TV and in the shops as Christmas approaches, the wish to do something special, but the lack of energy and spark to make it happen.

Nina and I have been decorating the lounge this evening in preparation for our families coming for the weekend. Jan, of course won't be there. I was putting up the swag on the mantlepiece, always a job that Jan relished. The lametta for the tree was wrapped in a newspaper from 2000, which means we both packed it there when dismantling the tree after Christmas that year, the last she was with me at home. Most of the decorations she bought. All so many memories, made worse by her condition now, after a deterioration the past couple of weeks.

But she's still there! Couple of days ago I managed to get her on her side, and said to her "afraid you're stuck with me then..." Jan's reply: "yes". We've reached the stage now where it is no use taking in special treats, as she can't eat them, she chokes very easily now, so even that's gone. It's hell at the moment.

Like I said, maybe it is the time of year.....

 

[connie]

Dear Bruce and Norman, don't know what to say. Know some of what you are going through.
Big HUG for you both, love Connie

 

[Robert]

Hello Brucie, Norman, Connie and all Moderators,

You somehow manage to answer posts with sympathy, understanding and words of advice where appropriate. So that it seems even more tragic to hear of the circumstances surrounding your own loved ones and the anguish you must feel.

I wish I had some words of wisdom for you, but can only think to say God bless you and yours in our struggle with this cruel disease.

Robert.

 

[patriciacolliso]

feeing guiltly

I Feel So Sorry For You All Having To Deal With Family With Alzheimers.i Have Looked After My Husband For Two Years With It.it Is A Terrible Desese. My Husband Is 66 Years Old. He Has Always Been A Gentle Man, Easy To Please, Loved His Country And Western Music And Dancing.people Used To Say To Me What A Nice Person He Was. He Started Shouting And Throwing Things Over Two Years Ago. I Went To Victims Support They Told Me That It Sounded Like He Needed Help.i Took The Advice And The Doctors Told Me He Had The Start Of Alzheimers.i Am Disabled Myself, With No Other Family At All , So I Have Been Looking After Him All On My Own.this Last Six Months He Has Got So Bad. Sleeps A Lot. Just Stares Into Space. Hardly Speaks. He Does Not Know If He Is Hot Or Cold. He Messes Himself Both Water And Bowels. I Have Had To Change Him When He Does That . Its Got Too Much For Me . The Day Before Yesterday , He Went Into A Care Home For Good. It Has Made Me Feel Terrible. Cannot Stop Crying. Has Made Me Feel So Guilty.

 

[Lulu]

Dear Norman, I really hope that it is a bit better for you today. And Bruce, hope you can enjoy your weekend.

 

[Michael E]

patriciacolliso hi,

sounds dreadful - so sorry. I am certain that your husband going into a care home is the only possible solution. You should not for a moment feel guilty - there is a point where it is impossible to carry on and it sounds as if you were far past that place. It appears that you have done everything a wife can possibly do and to be disabled and withstand this onslaught is very brave I think.

I am certain that when the people we love get to the stage you describe they are better off in a care home and you have a right to live as well. I suspect that you will suddenly find yourself very lonely and the next weeks will be difficult but I for one am certain you have taken the only possible course and have done far more than you should to support your husband when he was aware - now he's not....

The whole incontinence thing scares me - just starting - not the mess or the smell but the work it involves and the demands it makes on top of all the rest - you are very brave I think

love

Michael

 

[connie]

Dear patricia, warm welcome to TP.
So sorry to read of your sad situation, but please don't feel guilty.
You have done your very best for your husband, and there must come a point when you have to let them go.
You can now take a little time for yourself, and visit him with love and affection, something not always easy to do when you are having to clean them up and they are abusive.
Look after yourself, do hope things settle down a bit for you, but remember NO GUILT TRIPS. Connie

 

[BeckyJan]

I Feel So Sorry For You All Having To Deal With Family With Alzheimers.i Have Looked After My Husband For Two Years With It.it Is A Terrible Desese. My Husband Is 66 Years Old. He Has Always Been A Gentle Man, Easy To Please, Loved His Country And Western Music And Dancing.people Used To Say To Me What A Nice Person He Was. He Started Shouting And Throwing Things Over Two Years Ago. I Went To Victims Support They Told Me That It Sounded Like He Needed Help.i Took The Advice And The Doctors Told Me He Had The Start Of Alzheimers.i Am Disabled Myself, With No Other Family At All , So I Have Been Looking After Him All On My Own.this Last Six Months He Has Got So Bad. Sleeps A Lot. Just Stares Into Space. Hardly Speaks. He Does Not Know If He Is Hot Or Cold. He Messes Himself Both Water And Bowels. I Have Had To Change Him When He Does That . Its Got Too Much For Me . The Day Before Yesterday , He Went Into A Care Home For Good. It Has Made Me Feel Terrible. Cannot Stop Crying. Has Made Me Feel So Guilty.

I feel really sad for you as I know I may only be a step away myself. Please do not feel guilty - you have probably done far more than any normal human being should be expected to do. Once he has settled in the care home you will probably feel much better and a new relationship will start with him when you do your visiting. Many of us will be thinking about you. Try to let go a little. Love BeckyJan

 

[Lynne]

Dear Patricia,

There's never a 'good' time to be faced with an AD partner or relative having to go into care, but at Christmas time it must be the pits. I am so sorry that you must be feeling so bad, but PLEASE, don't let the guilt-monster get to you. You KNOW you have done everything and more than could be expected of you, and now it is only realistic to face up to the fact that your husband needs specialist care. The fact that you are disabled yourself is extra cruel.

If I may make a personal suggestion, how long is it since you have seen your doctor, about yourself? After all you've been through, it's very likely that you are suffering from depression. Understandable of course, but also treatable. Please get yourself checked out.

Best wishes

 

[BeckyJan]

Hi Becky Jan
I do feel such sympathy for you - but sorry I am so happy to have read your problem. No you are not alone. You are the first person to have made me feel human for three years!. My husband goes around and messes up all the things I have done to make things safe, comfortanble etc. He always used to lock up, set the alarm, make sure the house was secure when we went out. Would not let me even rewire a plug because it was not to his exacting standards. Now he will leave the front door open, leave the fire on - the list is endless. Yes he does sleep alot too - but maybe that just makes up for me not sleeping!

Hi Pansy
Glad you are finding this so helpful - all help from anywhere is greatly received (from one who was always independent that is an amazing statement!).

Have you had any help from your local Mental Health Team? Generally our local one is criticized greatly but they did run a course for early dementia sufferers and partners. I was very reluctant to go but did. Thankfully we met some wonderful people and as a group we are now great friends. The course material was quite useful but the main achievement was bringing similar people together. We now all meet quite regularly at Alzheimer cafes, pubs etc. Together with our partners we do get a laugh.

Why dont you enquire if something similar exists in your area?

My husband is not yet into day centre but I know a couple of friends whose AD partners would not be attending if it were not 'for each other' - one will go if the other will!
My husband is having a good day today - so I have planted some roses!! and masses of leaf sweeping. This has been quite rewarding after a difficult few weeks.
Hope you are well BeckyJan

 

[pansypotter]

Hi Rosalind. You are so right that it helps to know someone else is out there in the same boat. I know my friends are sympathetic, but it is not fair to burden them with our problems - and I find we see more people if I can keep things as light as possible in company. It helps me too - I think they say that if you smile you will feel happier! It's jolly hard to keep up in private though!
I did shout at my poor husband last night too - he had turned the video recorder off at the wall - after sitting beside me and watching me programme it to record a programme whilst we were out! The thing is the remorse is dreadful because he just does not understand what he has done and why I am so angry. - and it would help if he would just speak to me too! Anyway - your idea of having luch or a drink together sounds great - as you say what a pity we are all so spread out!