love is wearing a bit thin

[susie]

I always admire you Norman and Brucie for your devotion to your partners as they progress through this awful illness and I'd lkike to know how you do it! I've been with David for 40 years altogether and before we always had a good marriage -if a little too sport orientated for my liking. I know they can't help the things they do and say and most of the time I can put up with it but all it takes is some silly little thing to upset my equilibrium and I'm telling myself that I really do hate them. How do you remain so loving? I think I still love David deep down but where is the real David as I haven't seen him for at least 5-6 years!
Sorry if I ramble but allit took to unhinge me was the phone ringing and because I didn.t mute the TV quickly enough he was very verbally aggresive as he said all the noise would stop him hearing. You would have to have a gold medal in the olympic sprint to get to the remote control in the time he wants! 5 minutes later, he's all sw eetness and light and I'm absolutely steaming. When I calm down, I always feel as though all these confrontations are my fault so please tell me how you stay so rational and loving- is there a pill you can take?
Only 2 weeks to R & R in America so perhaps things will look better from the other side of the Atlantic! and now I've finished rambling and feel a lot better. The trouble is ,it's too wet to go out na ddig the veg.patch to vent my spleen!
A calmer Susie

 

[Brucie]

Hi Susie

Well it isn't easy!

At first I took off my wedding ring and, while still carrying on my caring role [who else was there to do it?], I said to myself "I don't know who this person is, because it certainly isn't my Jan. I have lost my wife and gained a monster.".

The doctor said "just dig a little and you will find her" and I cursed his stupidity.

Then something happened. I think it was the evening I was sitting there drained, dreading the next disaster, and also the strain of getting Jan to bed for another disturbed night.

Jan still knew me at this time and had most of her faculties, it was just the sundowning, rages, and constant need to be on alert for her,etc that was wearing me down.

Some days before I had written in the diary "Jan looked really beautiful today though her mind was marshmallow as usual. Totally clingy so I had no time to myself. Ate scarcely anything. Tried to watch some TV in the evening but she interrupted constantly."

Jan was sitting next to me on the settee and she turned to me and this is what I wrote in my diary "In a moment of startling lucidity, she said, “Things have been lovely; isn’t it a shame they have to end”. We sat down and I talked with her to understand what she meant, exactly. She said, “I don’t suppose I’ll see you much more”. I broke down. She tried to comfort me, saying, “we had lovely times… I love you very much”"

From that point I changed. Oh, I still cursed the disease, but I always tried to put myself in Jan's shoes. See the world from her perspective. Make as many allowances as there were available to make - which was a lot.

If she raged - I took it; if she repeated, I took each repeat as if it were the first time the words had been uttered by anybody.

We say "that's not them talking - it is the Alzheimer's". It is probably the most difficult thing you willl ever have to do, but try and get past the disease.

That's my only suggestion.

Whereabouts in the US are you going? Were you off to Virginia, or was that someone else? [sorry]

 

[Norman]

Susie
there is no magic pill,but I think if the basis of a happy marriage was there before AD it will survive the bloody awful torture that comes with it.
I know I often say day to day,but that is exactly what it is.
Some days the repeating over and over is not too bad,some days flashes of rememberance come back,this is when I have said before, perhaps they have got it wrong she doesn't have AD.
That is clutching at straws,I don't do that one any more.
At times she will tell me to drop dead,get lost, she will say "How did I ever get mixed up with you?"
Some days I hate her,I say I cannot go on any longer,some thing has got to be done about this lousy life.
Then she looks at me with those beautiful eyes and says" I couldn't live without you,you wouldn't ever leave me would you"?
She has no recollection of being so nasty to me.
I have to remember that this is not my Peg talking but the bloody awful disease
At times she will apologise to me for being a nuisance and a trouble to me and having a bad memory, that cracks me up.

She is in bed now sleeping like a baby,I look at her, to me she is still beautiful,and I still love her dearly, I ask over and over again WHY WHY WHY?
This is when I can shed a tear or two and she won't know, how could I explain them to her?

Love to you all
Norman

 

[susie]

Thanks Brucie and Norman for replying.
What would we do without you two sane and balanced people. At work this morning things look a little better and I'm trying to keep saying it's only the ****** disease! Most of the time David is a very gentle person and I suppose this is why the aggression seems so bad. I suppose I shall just have to grow a skin the thickness of a rhinocerous!
It is me that's off to Virginia Brucie and it's a bit daunting flying on my own but just the effort of putting systems into place for David warrants a holiday before I even start with the R & R. I'm sure the break will do us both good. My slight concern is that tasting "normal" life for a fortnight without caring will make things difficult at first when I get back but then it always takes time to reajust after a holiday.
Thanks for your advice
Susie

 

[Nutty Nan]

Dear Susie,
I admire your honesty: I find it hard to admit that sometimes it is almost impossible to really love this person who is so different from the one I married, laughed, worked and battled with for over 30 years.
It has taken me several years to discover how incredibly vulnerable my husband now feels, how inadequate and how frustrated. I try to live in HIS world, and at HIS pace, which is not easy, as the practical tasks still have to be fulfilled and sometimes I would like to follow and fulfill my own interests. So I compromise.
The aggression is harder to cope with, and often reduces me to tears, as is so 'unnatural'. Two things help: asking myself what has caused the outburst (I can often trace it back to something Tony has not been able to understand or cope with), and reminding myself that not only does he really not mean any of the abuse hurled at me (I've know him long enough to be sure of that, but it is still hard), but that he will have forgotten it long before I have - sometimes, he even says a little later 'sorry, I've been awful to you, I just couldn't help it'.
As a small example:
We've just come back from visiting my parents abroad. Tony had a very unfortunate accident at Geneva airport, where he fell as he descended the steps from the aircraft. It was dark and raining heavily, he fell badly,hurting his elbow and damaging a couple of ribs, and he was soaked from head to toe as he had rolled over on the wet tarmac. He was shocked and in pain, and his reaction was to shout at me that I had pushed him, and that "we are finished, I don't want anything to do with you any more". I was unable to calm him down, or help him in any way out of his misery, as he was convinced that I was the root of all his pain and conufsion. I am still amazed (and retrospectively grateful, though I did not feel that way at the time) that nobody interfered or came to assist. It took a very long time before he calmed down after I had managed to get some medical assistance for him, about which he was cross, but at least the nurse and ambulance men managed to get him out of his wet clothing in order to examine him. The saga continued for days, as he told everyone how I had try to kill him (his story changed with the days, he had forgotten about the aircraft and said I had pushed him into a busy road and he could have been run over by speeding cars) - it was traumatic for me, too, but at least I was able to 'step back' and rationalise. I can even smile about the incongruous idea now, but I can't begin to imagine how frightened Tony must have felt in his pain and not being able to understand what was going on around him .....

Susie, I have rambled - I really just wanted to say 'you are in good company here', it does us all the power of good to share our thoughts and feelings, and I, for one, have gained a great deal from everyone else's experiences.

Enjoy your holiday, hopefully 'absence will make the heart grow fonder' and you will have more patience when you return.

All the best, Carmen

 

[susie]

Dear Carmen
Your reply was so sensitive andI felt as if you were in my head as you mentioned all the emotions and behaviours I 've gone through. I'm finding stepping back from the illness difficult at times and other times it seems easier so perhaps the easy spells will lengthen as the illness progresses as I'm just a newish one to this AD. I am finding that when David and I do go out I've already done a "risk assessment"as work would call it,thinking how to make the day easier for him and pre empting stressful situations, so perhaps that's another step on the carers ladder. Having written it all down, I'm feeling much better and looking forward to going home tonight as David will be waiting with a cup of tea and a cake after my trawl round Tescos.
What did carers do before this forum?
Thanks
Susie

 

[Mjaqmac]

Susie, you and Carmen sound like very caring, loving, strong and wonderful wives. How lucky your husbands are to have you both.

 

[susie]

Dear Mjaqmac
Thanks for your wonderful comment as it made me feel a whole lot better. We spend so much time boosting our loved ones egos and telling them they are doing really well that we forget to tell ourselves how well we are doing with coping.Thanks for all your support.
Susie

 

[Jude]

Dar All,

It must be absolutely heart breaking to have your spouse yell at you and abuse you - probably even more so than when my parents do this. It still hurts a lot though!

My brother is due to come down for this long weekend. He has neither phoned nor turned up and it's now early evening. My parents have been looking forward to his visit for weeks, as it's been on their calendar. I've had the works this afternoon -

'When is Stephen coming? Will he be here before dinner? He's such a thoughtful and caring son and looks after us SO well. He does so much for us... blah blah... Then I got the 'our daughter is so awful - she never ever visits us. We wish now that we'd never adopted her, because she is just such an ungrateful child - in fact we are going to cut Judith out of our Will altogether.' This stuff cuts me like a knife. It's just killing to know that they've actually got the whole situation back to front and to hear them say this to other people.

OK - I know its the AD talking here, but I can't help feeling like strangling the whole lot of them sometimes!

My brother was last sighted at Xmas when he arrived for 3 days and spent 2 hours with the oldies and the rest of the time out visiting his mates. He failed to turn up on May Bank Holiday; didn't phone for weeks afterwards. He phoned me when I returned from Bali mid June and I haven't heard from him since then. I have no idea if he is coming down this weekend because he hasn't bothered to phone.

The oldies have been geared up for his visit all afternoon. They have spent most of the time looking out of the window for him. It breaks my heart - they are going to be SO disappointed if he doesn't arrive.

I could cheerfully kill him for this.

Sorry - just letting of a whole lot of steam here.

Jude

 

[Mjaqmac]

Oh Jude, my heart goes out to you. Can't think of anything to say to comfort you other than you're a bloody star. And it's an honour to know you even if it's only through postings and messages. Keep the faith baby, you'll get through another day.
We are all here for you as you have been for me and lots of others here.
Magic

 

[Jude]

Dear Magic,

Well, it did help to unload all that stuff. Still no word from brother mine. Ho hum...

I've just persuaded my father to finally go to bed and let me wait up for my brother to arrive whenever. I'm in for a very restless night here because my father won't sleep properly, as he'll be waiting for the door bell to ring. Last Xmas my brother arrived in a taxi, at 2am on Christmas Eve and expected me to fork out £35 for his taxi fare. He brought no clothes with him, no presents for the oldies - nothing!!

I had the foresight to buy presents 'from SF' to give to them and a couple of presents for him too, just to make sure that everyone had a nice time. I didn't expect my parents to remember to buy me a present of course, but I did fleetingly think that my brother might have done so.

I don't know why I keep making excuses for my brother, saying he's such a nice chap really, when he is totally thoughtless and causes such disappointment to myself and my parents. I guess I should just wake up to the fact that he's too lazy to spend one minute of his tiny life to think about them or me.

Anyway, the day wasn't totally wasted. Bruce came to visit me this morning to help with my computer 'skills'. We had a great time getting to know each other. It's wonderful to know that other people DO care and are prepared to drive through the pouring rain to lend a hand.

There's an advert in Oz which advertises a drink under the Clayton's Label. It's non alcholic and promoted as 'Claytons - the drink you're having when you're not having a drink.' Typical Aussie advertising....

Anyway, TP is my 'Clayton's family'. The family you have when you don't have a family....

I think I've blasted myself through the blues here. Thanks for listening to my big whinge session.

Jude xxx

 

[Kriss]

Oh dear Jude

your brother sounds like yet another candidate for bruised conkers!

Kriss

 

[Jude]

Dear Kriss,

I had a serious dose of the 'Why Me's?' last night didn't I. It was probably due to all the TLC from Bruce and my thinking that the family should be giving me support.

ANYWAY - thanks to eveyone for listening to another old whinge of mine. It helps so much to know that there's so much support available. Today will be fine!

Best wishes, Jude

 

[Mjaqmac]

House calls

I didn't know Bruce did house calls.
How do I book one?

 

[Jude]

Dear Magic,

He doesn't usually - except at enormous expense [to himself]. He very kindly came over to give me and my computer a lesson in how to work in harmony together, without fusing each other's circuits in the process.

It has helped. I hope to post some Bali photos shortly.

Jude

 

[Mjaqmac]

Was wondering about the photos, I thought maybe I'd missed them.
Will look forward to that.
Magic

 

[Kriss]

Dear Jude

has the prodigal son shown up yet?

Kriss

 

[Jude]

Dear Gang,

Thanks so much for all your kind comments and commiserations. My brother phoned late on Friday night and I read the Riot Act..! He has promised to come down next weekend instead. I am somewhat mollified as at least he knew that he was supposed to be here, which is an improvement on his forgetting entirely.

By next Friday I shall have calmed down enough to discuss things rationally.

Best wishes to All

Jude

 

[Gee]

Hi Susie,
Just read your post on how do you stay loving. My Mother lived with me since Dad died ten years ago. Last year was found to have Alzheimers. I had a really rough time with her, (as all we carers seem to because of this awful condition). She would follow me every where. The kitchen, the bathroom, the garden every where I went she wanted to be there. She would go to bed, then get up, go to bed come back down. I ended up being used to only about four hours sleep at night. She would get angry with me, want to hit me. Tell me that I didn't care about her. Sometimes she would threaten to hit me, her little fist would clench and would wave about, and I'd have to warn her in a very firm voice not to dare. There were times when I thought I could not go on. Times when I'd beg for help from family, but they were always too busy that weekend, or they could'nt have her because she's burnt their carpet. No matter that she's burnt mine. I thought my own dear husband would leave me because we had no life together for the ten years we had her. But through it all I would look at her and every now and then she would would smile at me, or she hold out her hand for me to hold. Sometimes she would even remember who I was and tell me that she loved me. I realised that she had to follow me about. I was her safety net. I was the one who could remember and think for her. I was the one person she could rely on. I was her rock. I would tried to see how frightened she was, with what was happening to her mind, and yes I would get angry, and lift my eyes and pray a lot. Then she died after the most horrible three weeks for her. When she died it was peaceful, and I felt so sad that I couldn't pave the way for her, but someone said she's free now, and so she is, no more suffering. So although I'm still raw, I'm still worn out, I'm still missing her. I have to be glad for her that she is not suffering as she was. I know it's hard and no body who has not been in this position will ever be able to tell any one of us , they understand what it's like. All the people that visit this site. We know. Hold on Susie. Slam a door, shout, when it gets hard, and when he holds your hand take comfort, because somewhere inside his mind he does know what you are doing for him. Don't blame him it's not his fault. When you get really down contact this site. We'll all be here to help with a few kind words. I know everyone hepled me so much when I was desperate. Take care, we are with you. From Gee.

 

[Jude]

Dear Gee,

So great to read your post.

It gave me a huge amount of help this morning and the strength to forget about the Weekend From Hell. Onward, ever onward. Day by Day, as Norman always advises, so wisely.

Thank you Gee.

Jude