Patience.....

[Shedrech]

Hello Mulberry50
Welcome to TP - the forum provides a wealth of experience and support.
Thanks for an interesting and thoughtful first post.
The first of many, hopefully.

 

[Scarlett123]

Hello Mulberry50
Welcome to TP - the forum provides a wealth of experience and support.
Thanks for an interesting and thoughtful first post.
The first of many, hopefully.

A warm welcome from me too, to TP. You'll make loads of new lovely friends, who will help to support you, and who understand completely.

 

[Casbow]

Scarlett123

Show me someone who has endless patience, 24/7, whilst caring for someone with this terrible illness, for years and years, and I'll show you a fiberoo!!! Again, as I've said before, when I took my marriage vows, I fervently believed every phrase that preceded "I Do".

But when I thought of the phrase "in sickness or in health", I was gazing into the eyes of my lovely strong man, who adored me, and I had a brief vision of myself, tenderly stroking his fevered brow, if he had a cold (man flu hadn't been invented in the 1960s), perhaps feeding him soup, and him, gratefully, whispering hoarsely (cos he'd have had a sore throat as well) "thank you my darling, what would I do without you, you are truly an angel .............."

Not for a single second did I imagine myself repeating everything a million times a day, clearing up after the joys of double incontinence, being assaulted both physically and mentally, trying to manage on a couple of hours unbroken sleep at night. Or being accused of stealing things he couldn't find, or hiding them on purpose, being accused of having affairs, even with complete strangers, hating myself for feeling resentful, and being so insanely jealous of other couples who had ordinary and normal lives. And no Alzheimer's in their lives.

I could cheerfully have murdered people who said "but he looks so well!" Or those who would say "yes, I know what it's like, my Uncle/neighbour/third cousin 6 times removed is the same". They probably visited once a year, if that. People who don't live the lives we live, or have lived, haven't a clue. It is only on TP, where others know exactly what we mean, that you can truly have understanding.

I haven't read a single post where a spouse, who is arranging for their loved one to go into a Care Home, hasn't mentioned the word "guilty", either before, during or after. Carers have the hardest journey of all, and those folk on TP who have seamlessly acquired adequate home care, and/or support are few and far between.

I am not, and never was, a mixture of Mother Theresa, Princess Diana and the Angel Gabriel. I was just a human being, who, with their husband, was the reluctant recipient of this Russian Roulette that is Alzheimer's, and who tried to do their best.

And that's all any of us can do. I've now got through 11 months of The First Year without John, and I know that I tried to care for him as best as I could. My best may be better than some, and worse than others, but it was all I had.

God Bless all carers out there - you're doing the best you can, and who can ask for more than someone's best? xxxxxxxxxx

Scarlett123 you are amazing and wonderful at explaining things to people. You would be wonderful as an advisor for Alzheimers society (although I suppose you are doing that now.) But you have been through so much and I have so much admiration for you and know that your husband was a very lucky man to have had you to help him. On the subject of helping our partners fill in the words, that can't happen with us as I can't understand what on earth he is going on about. His conversations make little or no sense. So I can't offer words to help him. love to you all.x

 

[hodge]

complete empathy

My Mum had Alzheimers, ending up with it being very severe and needing to go into a home, so I know exactly what it's like. But now my OH has the very early stages and I really would like some advice. he has trouble with remembering the right words, tho sometimes he's fine and you wouldn't notice. But conversations sometimes go on and on because he's groping for the right word, and I don't leap in and tell him because that doesn't seem the right thing to do. Can
someone tell me if that's the right strategy ? And then he has patches of doing things about the hous terribly slowly, so I want to leap in and finish whatever he's so slowly doing. I am a very patient person (I had twins who seemed to spend their youth dawdling), but living life at this pace and endlessly waiting for him to finish the sentence, or whatever he's doing is really taking it out of me. I know there's much worse to come, but please can a kind and wise person here tell me how you train yourself not to feel impatient, or is there a good book or something I can read. If I feel this bad when he's hardly ill at all, what's it going to be like when he gets worse ? He's also got very determined that we should both do the things he wants to do, so that I feel as if my own life is seeping away and his illness is taking over both of our lives. I know that sounds very selfish, but I suffer from depression (have had a lot of treatment for it, and it just keeps coming back again), and I feel very down.

Hello Morganlefey

I have just read your post and everything you have said could be me. My husband was diagnosed three years ago and he is in complete denial even sympathising with people whose loved ones are diagnosed with AD when he sees it on TV and saying what a dreadful illness it must be. My patience is tested to the absolute limit and he is dreadfully slow in all his daily tasks beginning with a shower in the morning, etc which takes almost two hours. I can fortunately leave him alone for a while at the moment, so I get our shopping done whilst he is showering, or otherwise if we went together it would take all day. He also likes to do the things he wants to do and I also feel my own life is seeping away, I am 63, he is 74 on Christmas day, and my long awaited retirement is none existent, I can't even have a break for a holiday as he would never agree to respite and a holiday together just the two of us would be too stressful. We have no children and I have no support whatsoever, emotionally or practically. It is an uphill struggle every day and no end in sight, only that things are going to get so much worse and I don't know how I am going to cope. I also suffer from depression and find it hard to get out of bed somedays. I do have a bedroom on my own thank goodness, it is my only sanctuary or I think I would have given up on life by now. I also feel selfish in thinking that my life is slipping away, but I can't help the way I feel.

It helps to know that we are not alone, that there are others who understand these feelings as they are also going through the same awful process.

 

[lizzybean]

And that's all any of us can do. I've now got through 11 months of The First Year without John, and I know that I tried to care for him as best as I could. My best may be better than some, and worse than others, but it was all I had.

God Bless all carers out there - you're doing the best you can, and who can ask for more than someone's best? xxxxxxxxxx

Oh gosh! You've made me cry now.

 

[esmeralda]

Had to laugh at the iPod story Morgan. It is very hard to cope with change and I find every new 'stage' is difficult then eventually I adjust. I do fill in words if my husband is struggling, but more difficult is when he wants to communicate something and although he starts the sentence alright. Eg 'There's something I need to discuss with you' he then just keeps repeating that sentence but we never get to what he wants to discuss which is very frustrating for him. If he can't get to the point, and really, he never does, after three or four goes I distract him with something else, or say, 'Oh, it'll come back to you later'. He seems quite happy with that. It makes me very sad that he can't communicate though.

Try not to think too far ahead. This disease is so unpredictable, you don't know how things will go, maybe not as bad as you fear, but trust that you will have the resources to cope with it whatever, and there will always be somebody here to offer support and a hug.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Diz]

Loads more where those came from! It just helps others to know that they're not alone. Looking back, I can laugh at some of them, like when he asked me if I was "with child"! Not only does it sound almost Biblical, but seeing as how John had a vasectomy 45 years ago, I had a hysterectomy over 30 years ago, and Doing Things Like That are not really tempting with double incontinence, it was funny!

But I just said "hmmmmm, I don't think so but I'm not sure. I'll let you know". Oh boy, it seems a million years ago. xxxxxxx

this has just made me LOL !!! Keep these stories coming... they are fantastic!