O.k.

[Lulu]

Well I'm sure that you will be tired of some of my ramblings, and perhaps I ought not write in again after this in case you have no patience left. But who else have I got to say the things that are really bothering me ..that's why I use this forum.

Mum was diagnosed with probable early stage dementia which took me a LONG time to come to terms with, as I thought the diagnosis was possibly wrong -even though I was the one who instigated all investigations because I knew she had serious problems. Then, without doubt, YES, I could see it all there. She does have this awful illness, plain to see (except to the rest of the family), and on we go. We have had a difficult past relationship, but I wish to care for her no matter what, and I do love her.

This week, she has been bright and sharp, (which she can be from time to time), though still with a bad, almost non-existent memory, and still relying on me for running her life. I looked at her this evening as she was eating her meal, and as I was plating up tomorrow's meal (as well as some nice soup to eat in this cold weather), I wondered just what s going on here? Why can she not look after herself more? I have tried to only step in where required so as not to make her reliant before she need be, but she blatantly expects what is now in place, and treats it all as quite normal. She thanks me, I think she knows the pressure it puts on me, yet she seems powerless to do anyhting about it.

I feel so depressed some nights now. It is as though she has said to herself, 'I can't be bothered anymore. Let 'Lulu' do it. It's not worth cooking or shopping for one now, and she won't mind'.

STILL, I am seeing her as she's always been, and I can't distinguish between the two. Why does she sound so normal, and yet isn't? I'm told she is in the Moderate stage now. Is this normal for this stage?

She has not taken her Aricept for 5 days now. She has just got better and better (but this is how she is. good one minute, a wreck the next), but the headache due to the headcold has persisited!!

I want to scream tonight. Oh I'm so sorry ....is it me that is unusual? In fact, I'd like to RUN. I know she woldn't use me, but why do I feel like this when she's 'good', and I feel better when she's 'bad'.

Ignore me if you want. I'll understand.

 

[Brucie]

The Greatest Race Never Staged

In fact, I'd like to RUN

I think we have all wanted to run at some stage, but we don't, for the most part. If we did, we'd be the fastest long distance runners the planet has seen, overtaking even Cheetahs.

So, our running is surely The Greatest Race Never Staged

 

[Michael E]

Lulu hi,

Really does your head in sometimes - it's the same here - I am now a prisoner because poor Monique relies on me so much - sometimes she is aware and says she cannot understand why she cannot help - then makes a mess of just putting the knives and forks on the table. I busy myself over a hot microwave and chicken slithers cut real small with stacks of garlic and herbs and she looks at it and expresses distaste for my culinary efforts. I have just purchased a laptop with wireless so I can sit with her in the evenings whilst the TV blares out the inanities of life ( I do like the Bill and the Street) - she will only watch ITV - and in fact the TV is on so that we do not have to talk because actually there is nothing to say except that we love each other.

The early sunsets have messed up my 'help' situation - a SS lady comes in for 4 hours on Tuesdays so I can get out of the house and do my own thing - worked great at first but now Monique sees the darkness arriving and I am not there so lots of time must have passed and she is incredibly angry.


Its a real bitch this illness... Horrid to be in that head unable to do things - I have just finished the meal and washed up and suggested Monique might like to pour the coffee and put it on the table in the living room - for the first time ever she said no - she want s me to do it which means she feels she can't do it... So sad - so very very sad.

sorry Lulu =- intended to commiserate and ended up pouring out my own woes. I do commiserate and in a funny way it helps to know there are others out there - as bemused and messed up as me.

Got to find the funny side of it all - somewhere

love

Michael

 

[Lulu]

Dear Michael.

I thought, as I'd signed off this time, that well, I have really nothing to complain about, there are others worse off ...I know all that. But I feel so confused, and tired, and the endless-ness of it all.

Then, I read your post about the constipation and I understood what you were going through, too. It also made me smile through your sense of humour. How on EARTH do you get to the bottom of all these complaints -we go round and round and circles. Try one thing, then another, only to have something else appear! Then you know that if you decide just to ignore it, you may be missing something, and it would be your fault. We have the headaches and the cold rather than the constipation .....I begin to see there may be no cure for this.

You have helped Michael. Bon courage ..tous les deux.

 

[Michael E]

Lulu hi,

I have in fact got to the bottom of this present problem several times this week but am not quite sure what lays there...... My current philosophy and they change frequently, is to take one day at a time - bit like being in AA. Really do not want to think further than what is happening at the moment - Not make plans - not think about the future except to find out about practical things.

As I take a sip of whisky I remember it goes
"God grant us the wisdom to accept the things we cannot change,
courage to change the things we can,
and wisdom to know the difference."

Sort of applies to all of us as well

It is certainly not a bottomless pit -

regards

Michael

 

[Norman]

Lulu
you keep posting,that is what we are here for to listen and try to help.
My wife is 100% reliant on me know,like Michael says: then makes a mess of just putting the knives and forks on the table.
It is so sad they cannot do these simple tasks anymore.
Lulu I often feel like running away but I love her and never will.
I note that many people are using the same philosophy as myself,it is the only one,day by day Lulu.
Norman

 

[Brucie]

I am now a prisoner

I remember this stage so well, and the confusion it causes in the carer.

I wanted to get away - yet knew I couldn't

I wanted Jan to get better - yet knew she couldn't

I wanted Jan to be taken care of - yet knew I would not permit that willingly

I wished I were dead, to save the pain of seeing her in such turmoil - yet had to be there for her

I wanted to curl up in a ball in the corner - yet knew that would do no good [although I did try it on a few occasions]

I wanted to explode - but I couldn't find the bl**dy trigger

Things have moved on for me - are they better? No, just a different kind of bad, but they are worse, if I am honest with myself.

Hang on in there....

 

[jc141265]

Hey Lulu,

perhaps I ought not write in again after this in case you have no patience left.

If they can all put up with me, then I'm sure they can put up with you.

Mum was diagnosed with probable early stage dementia which took me a LONG time to come to terms with, as I thought the diagnosis was possibly wrong

I still think/do this at times, 6 years later, I even spent a whole night searching the internet on an obscure disease called 'Wilson's disease' that can be mistaken for mental illnesses the other week in the hopes that I might find a an alternative diagnosis (i.e. one with hope). The whole time I was thinking though whats the point, even if it was another disease I do beleive the brain damage is now irreversible...but then the good days come and I wonder.....

I wondered just what s going on here? Why can she not look after herself more?

I look at Dad often and his condition confounds me, sometimes he seems so close to the surface, as if he will suddenly say, "Ha, had you fooled didn't I? Damn that was a really good joke." and then it would turn out he had been pretending to have dementia all this time. I think this is probably the key to why you are finding it so hard of late, they are there but they are not there, its like them being in a soundproof room right in front of you with their back to you and you can see them through a window, you're jumping around at the window waving you arms frantically, yelling but they just keep carrying on as if you weren't there. They are so close, but so far away and perhaps it is a human instinct that we want to fix things, so you spend all these years trying to think of ways that you might be able to, waving your arms around frantically. Sometimes they appear to be about to turn around, but only get half way and then smile and nod at some other person in the room that you can't see. I suspect it might be that creep Al they're talking to, and he seems to take great pleasure from stopping them from behvaving normally a really nasty influence.

We have had a difficult past relationship, but I wish to care for her no matter what, and I do love her.

This disease also opens up a lot of long past wounds, and as you find yourself unable to do much to stop the disease I think we tend to pick at these wounds quite a lot as mentally we have a lot of time for contemplation. Pick, pick, pick and then you have an old wound that was almost healed getting quite painful again. Its like sitting in a room with someone who says nothing as opposed to someone who chats away, the long uncomfortable silences lead to too much thinking, doubts and the surfacing of things we thought we long past.

wondered just what s going on here? Why can she not look after herself more? I have tried to only step in where required so as not to make her reliant before she need be, but she blatantly expects what is now in place, and treats it all as quite normal. She thanks me, I think she knows the pressure it puts on me, yet she seems powerless to do anyhting about it.

If it makes you feel any better I and the rest of my family know this feeling, its like you can't accept what is going on but in ways they have. Again you are banging on that window but they remain unaware.You're so bloody angry with them for not hearing you, not doing anything.

I feel so depressed some nights now. It is as though she has said to herself, 'I can't be bothered anymore. Let 'Lulu' do it. It's not worth cooking or shopping for one now, and she won't mind'.

I think my mum felt this way with Dad an awful lot, the man she had always been so dependent on, the one who always looked after all her needs, appeared to just give up trying to be who he used to be. To us they appear to be the same old person, but something has shifted, I think Mr Al Zheimer is sitting there chatting in their ear, and they just forget to be who they used to be, he is very distracting.

STILL, I am seeing her as she's always been, and I can't distinguish between the two. Why does she sound so normal, and yet isn't? I'm told she is in the Moderate stage now. Is this normal for this stage?

I think i've covered the first bit of this in the rest of my post, as for is this normal....I do believe it is, you are at the normal stage for a carer and your mum is at the normal stage for the sufferer. Novel idea that we too go through stages, but I do suspect its true.

I want to scream tonight. Oh I'm so sorry ....is it me that is unusual? In fact, I'd like to RUN. I know she woldn't use me, but why do I feel like this when she's 'good', and I feel better when she's 'bad'.

When she is bad you can accept the disease, when she is good we find that what we had thought we had come to terms with, we haven't really. Another side to this disease that makes it so hard for the carer, I don't think you can ever fully come to terms with it as long as the 'good' days continue to pop up, and for 6 years now for me, these 'good days' still show up. Usually if someone has a terminal illness we expect that they just get worse and worse until they die, I expect that even cancer sufferers however have good days that make their loved ones hope again despite the terminal diagnosis, but nothing lasts as long as this (well nothing I know of) where you go for years where you some days you can't help but think that there is a way out. As for are you behaving normally by wanting to scream, wanting to run away? Absolutely. Terrible to say, but it is true.

But now I will try to give you some hope (this time some real hope) .....it can get better. Its not going to get lovely and delightful, but this is just a stage for you and you will begin to cope better. Just take a deep breath, and take one step at a time, try to listen to the voice in your head but keep reminding it that there is nothing you can do for now except to take one day at a time.
Big hug for you,

 

[connie]

None of us can make the situation go away, or even become any better, but we can and do listen.

It is a journey that we are all making, and If I had read the brochure, I would never have bought a ticket. But hey, what we cannot change we must endure.
Thinking of all you wonderful carers out there, Connie

 

[Loiner]

I know how u feel, been a rough week with my mum and all the things said by everybody applies.
One thing I will add, which adds to the pressure and I don't need it is doctors etc, saying "how long do you thing u can keep looking after her?" and variations on that theme.
I wish they'd understand, that some ppl have a fierce sense of looking after family and putting someone in a home is a very last resort to them.
All we can do is stick with it, and muddle thru when things are rough

David

 

[Stimpfig]

Hi Lulu

All my life, (just as David says) people have asked me when was I going to live my own life. Have been taking care of things for 25 years now and am tired at 43 ! But as Brucie says, there's no time to rest. I have had four operations between 2004 and 2005 and have returned from hospital to do things when I was `dying' to take rest. Oh, do I sound like a Martyr ? Probably, 'll insert a smilie here Even then, when I read what others have been going through here, I just count my blessings !

And I wonder, when mum's gone, will I have a cause to exist ?

Take care,

Sue Stimpfig

 

[Brucie]

And I wonder, when mum's gone, will I have a cause to exist

That's a very important point you make.

When we devote ourselves to such a high level of caring, then that in itself can become [in a way has to become] our raison d'être, particularly if we soldier on alone. Also, this can be particularly so for a spouse.

This is why we all have to ensure we maintain a link to a world outside the one we are imprisoned in, if not at present, then at some time later. We have to maintain an outside interest.

 

[Michael E]

And I wonder, when mum's gone, will I have a cause to exist ?

That sentiment scares me rigid - The rest is just stuff but that is so permanent -

 

[katieberesford]

These thoughts scare me too much to think about.

Having been with David since I was nothing more than a school girl aged 15, he is my life. What will I do when he is gone?

Katie

 

[Brucie]

Hi Katie

I was a late starter so was only with Jan from age 18, since when we were together all the time until 2001 when she went into her care home. During our time together we might have been Siamese twins, that is how close we were.

Now it is a visit most days, and even then it is painful, but hopefully useful to her [and me]. You ask

What will I do when he is gone?

and I used to ask myself the same question [still do sometimes at dead of night].

Much as we love and have depended on these fabulous people [as they have depended on us], at some stage we will realise that they are leaving us. Dementia generally gives a slow goodbye - way slow..... I'd say way too slow because it is so painful to watch them dwindle.

What happens as they are leaving, and when they have left [except in our memories], is pretty much up to Fate, and our views of life alone.

Each case will be individual. I have been fantastically lucky to find someone else, who knows Jan and whom we have both known since I first met Jan. Wasn't planned.

We are three at present, but will ultimately be two, and only time will tell how that will pan out.

But David wouldn't want you to shrink away when he leaves.

Just take it as it comes, is my advice.

 

[connie]

Hi Katie, I lost my dear husband after 35 years together very suddenly 11 years ago.
We had been like siamese twins, I had never done anything without him.
I had, for his memory and my own sake, to try and make a new life.
My journey led me to meet dear Lionel, within a couple of years diagnosed with A.D. We never know what is around the corner, but we only have one life each.
You will always be the essential you, kind caring and loving. Please don't despair.
Connie

 

[katieberesford]

A big thank you Bruce and Connie for your kind thoughts and wisdom

It is sooooooooo hard though isn't it.

Katie

 

[Brucie]

there's nothing that is harder....

 

[Lulu]

Well, I feel ashamed yet again, that I let it all hang out. Everthing you all say is digested, and I am so appreciative. I have nothing to complain of really, I know.

So, Norman, it's day by day then. Perhaps that is going to be as well, since I no longer have the energy to think about tomorrow. This will free me from wondering about the future, the fact that my husband is quite a bit older than I, that there may not be time to realise some of our plans once we have helped Mum through this. That we were just on the cusp of having a little freedom as the children became independent, and now our time taken in caring. Yet this IS done willingly. Nobody could care for her any better, although I shall ask for a little support as necessary, and I don't wish to lose her ....She wouldn't want it to be this way. So many complicated emotions are involved, aren't they?

I would have liked to rant and rave at someone who knows Mum (the rest of the family), but they aren't listening, don't want to know, and it has had to be you good people here. I didn't need any answers,as you perhaps know, just to let someone else know the frustrations, and of course you always understand because you have been there, and are experiencing the same things.

Goodnight everyone. There is so much to be thankful for, this site being one. Lulu

 

[Lynne]

Lulu,
what you don't seem to realise is that your "rant" IS actually constructive. Not for you perhaps (unless it's a bit of pressure-release) but for the rest of us. Me because I know nothing, and - although some of the information & knowledge I gain here scares me s**tless if it's part of my future life - the thread you have generated (and most of the others) provides me with knowledge of what the reality of AD is like and in some part prepares me for what is to come. For long-termers like Bruce & Norman & Connie, I think they probably feel that, even though their own domestic situation is on a slippery slope and almost unbearable to endure, at least by comng here and guiding, sympathising, empathising and comforting other desperate souls, they can actually create some good out of an awful curse. Others, at various stages of coping with AD, can find that "they are not alone" in having to cope, and learn to cope, and learn NOT to feel guilty becasue they can't stop the progress of this awful disease.

Lulu, you have given good advice here yourself; you contribute to the good which is being done here, and the love and support which is generated here. You have as much right as anyone else to come onto this board and have a good howl at the moon when you need to. The fact that others may be further down the road than you & your mum doesn't make your circumstances any 'better' for you, or any less deserving of genuine understanding & sympathy, or mean you can't have your own doubts, fears, pain or anger brought out into the fresh air.

Keep posting, keep reading, hang on in there. Thinking a big {{{Hug}}} your way.

I hope some of that said what I intended to say - I'm not expressing myself very well tonight; too cold!!

Best wishes