Gazing into the abyss.

[gringo]

And if you gaze long enough into an abyss, the abyss will gaze back into you.
Friedrich Nietzsche.
Many times I have found myself consumed with anger and bitterness at, what I saw as, an uncaring society, almost totally unaware of the existence of and reality of dementia. However, on reflection, I have had to accept that, until I was personally affected, I was part of that society, as unaware and uncaring as the rest.
I have come to believe that only those with ‘hands on’ experience can have any real insight into what dementia is and does, and what it means for both carer and cared for. This is as true for those in the medical profession as for anybody else. Dementia turns ‘normal’ on its head in ways that cannot be imagined until you are faced with it.
Like many of us, I spend much of my time dealing with or having to think about dementia and it colours my entire life and is literally taking me over. I find that I can only relate well to people who are in the same boat as myself, because they are the only ones who can understand what caring for a relative with dementia involves. I read the posts on TP. every day and have a fellow feeling with so many posters. I become impatient (intolerant even) of those who do not share this experience, and I find it difficult to interact normally with them. I am becoming isolated, living in a 'dementia bubble', and realise that eventually this may result in there being two victims of the disease rather than one.
For elderly people, like myself, looking after a partner, this is not of great consequence, but for younger people looking after a parent, I think it’s quite a different matter. You don’t have to look far on TP. to see how real this problem is.
However, it is one thing, to see the danger and quite another to know what to do about it, or, knowing, being able to do it.

 

[benjie]

Oh Gringo how much I agree with you in everything you say. and to add to the matter, so often we the carers only have this contact with others in this situation. When it is possible to get out and meet others with the same problem (which is often difficult) it is nice to be able to compare notes and get/pass on advice or just enjoy the company because they won't let us feel guilty.

Take good care of you please

Best wishes Benjie

 

[angecmc]

As usual Gringo, you have summed up being a carer of a dementia sufferer in your usual wise and eloquent way. You are absolutely right. I too now live in a different world and find solace in reading other peoples stories on TP. I have had to force myself to limit my time spent on here otherwise I feel I am consumed by dementia. It is hard because as my Mum is now in permanent Care Home, I am at a bit of a loss and find I want to try to help others still struggling out there. Having said that, I know I could not throw myself completely into that role and would not work as a carer either in a Care Home or going to other peoples houses, caring for Mum was exhausting and I do not ever want to go back there again if possible. Take care of yourself xx

Ange

 

[velo70]

The Abyss

Hiya Gringo. I am speechless, because in your post (above) you just about said it all. It's a relentless tide that envelopes us all when this disease hits us. I spent about a year in disbelief, but then our GP wrapped it up with 'it won't get any easier. Daily we begin again t and try to cope with it. Our own wellbeing erodes a little each day, and it seems there is no limit to the problems that present to be overcome. I am sure every person is different, but the overall problem seems to affect us all, with our quality of life being eaten away. I, too, am a frequent visitor on T P but don't reply to many. I too care for my wife. Regards Gordon

 

[desperado]

Incredible it is as if you have read my most innermost thoughts that I didn't even know I had. I realised whilst reading your post that I am actually IN the abyss not gazing into it. The "friends" have all but gone now and it's me, Mum and my brother and even he is drifting a bit but knows he HAS to help otherwise I would not be able to cope at all. People all utter the right noises but they cannot possible understand how bad it really is when you are faced with this dreadful disease day and night. To see your nearest and dearest reduced to such an awful state is so unfair on them. I am sure that if I am ever diagnosed I will end everything because this is not a life for Mum it is an existence !!! Thank you for the post, it really hit home !!!

 

[Rageddy Anne]

Yes yes yes yes.
There's a song called "Where are the clowns?" So many of our friends are missing now.

 

[Izzy]

I always loved that -

http://www.youtube.com/watch?v=5os4NFeKFFs

so poignant Gringo.

 

[Scarlett123]

Friends? I am grateful for those who have stayed in contact, but feel that I could cheerfully throttle them when they talk about their problems, which to me, seem nothing. Yet 10 years ago, these were massive problems for me too.

I nail a smile on my face when they tell me of their outings, holidays, and fun, and try and make out I am really interested. In reality, I am envious at best, and hating them and their Perfect Lives at worst.

You are so right when you say that nobody knows what it's like until they've experienced caring for a person with dementia. It is a lonely grey world, with occasional bursts of sunshine, but boy, does it suck the life out of you.

And you know what makes me feel like screaming? When

(a) somebody asks "is John better?"

(b) when they quote Terry Pratchett to me as an example of someone making the best of AD, assuming everyone is the same and just needs a nudge

but the biggest scream-making statement is when someone takes my hand, and says

(c) you're looking very tired, you must look after yourself, or you'll be ill too

I know that!!!!!!!!!!

 

[alipom]

i agree with every word you have written and it made me smile...thank you

Sent from my GT-I8160 using Talking Point mobile app

 

[chridgets]

Oh god this is a terrible disease. It is all consuming for both the of us. My partner frequently asks me if she is crazy. There are so many simple things that I have taken for granted all my life that she can't do anymore. Sometimes she can't find her way to our bedroom, she can't get into bed by herself, she leaves the fridge door open, the milk on the counter. I get frustrated with her and then upset with myself. There's so much repetition. Over and over. About the fourth or fifth time she does or asks the same thing I want to scream. I feel badly because she is the one with the disease and I feel sorry for myself. These days-nights, I'm not sure who the tears are for anymore. For both of us I guess.

 

[Haylett]

So well said Gringo. And I completely agree with all of the above. Two weeks ago, I was asked to talk about caring for dementia, and one of the things that I spoke about was this "living in the twilight zone", the Invisibles, the sense of being "cast out from the pack". I also find it hard to express a real and genuine interest in the holidays, spa days, new cars of others and feel terrible guilt about it. I used to not to be so inward looking.

When Mum died, I set out a plan - get back to swimming to get fit again; revamp rusty work skills to get back to employment again. But financially, we're so strapped for cash - stlll caring for MIL, trying not to impair the lives of our beautiful and selfless teenage sons, trying to reassume the financial responsibility from a husband whose business is in a state of collapse. It requires mammoth reserves to continue to burn the candle at both ends and to be "upbeat". Kind and genuinely well-meaning friends told me to make time for me after Mum died, time to grieve and to visit friends whom I haven't seen for years - but post caring, still caring, these just remain pipe-dreams.

I know I'll feel better if I can just get back to work and recoup some of the funds before it's too late, that are cannibalised by the cost of care - or simply, not being able to work.

Then I read some of the posts on here and realise that my stress is only a drop in the ocean....

 

[Scarlett123]

I fear I may have completely lost it. I was reading the posts on this thread, and came to one of them and thought "that is identical to what I'm experiencing! This poster has summed up every single thing I'm feeling. I must respond "

Then I realised I would be responding to my own post!!!

 

[Haylett]

Good post, Scarlett!!!

I fear I may have completely lost it. I was reading the posts on this thread, and came to one of them and thought "that is identical to what I'm experiencing! This poster has summed up every single thing I'm feeling. I must respond "

Then I realised I would be responding to my own post!!!

 

[gringo]

Scarlet, No you haven't lost it yet, the time to start worrying is when you disagree with your own posts.

 

[rajahh]

Scarlet, No you haven't lost it yet, the time to start worrying is when you disagree with your own posts.

Now that has made my day. I actually laughed out loud, not something I do very often. Thank you Scarlett and Gringo.

It would not have worked without you both

Jeannette

 

[Scarlett123]

Scarlet, No you haven't lost it yet, the time to start worrying is when you disagree with your own posts.

Oh well, that treat is yet to come!!

 

[Jaffy]

You all are so good - this is the first time I have been on this thread and how very much I needed it. I knew in 2008 that my mind was slipping abnormally. And although it was 07 that OH began his decline, I blamed it on some medicines,etc. Now this year, I see it as dementia-worse than my own.
With that recent awareness, i have entered this site and have been blessed. But I now find that i am living in 2 dementia bubbles -my own and OH's! I find I am sinking from the weight of trying to balance them both.
Caring for him is robbing my mind faster and stealing my time with the children while I can still function some, mentally. They avoid him, as truthfully, I would too-if I could! But when we really need them they are here in a second and so many don't have that.
Thanks for letting me say what I shouldn't even think! Jaffy

 

[Noorza]

Jaffy here no one will tell you what you should or shouldn't think because after reading this thread, I too have felt the same way. Could you get some support from your children, have you let them know how hard you are finding things at the moment?

 

[gringo]

Hello Jaffy,

Thanks for letting me say what I shouldn't even think! Jaffy

Hello Jaffy,
As is often said, no matter how bad one’s situation there is always someone worse off. As you have just demonstrated in spectacular fashion. Such a difficult situation, I don’t know what is available in the States, but I do hope you have some help to stop you sinking completely out of sight.
My heart goes out to you.
On TP. you can always feel free to say it like it is.

 

[kkerr]

Thanks for starting this thread Gringo!
I am a child, caring for their parent with dementia. I am (only) 42 years old. My biggest "dementia bubble" moment comes when my well-meaning friends, what are left of them, compare caring for my mother with them trying to care for their children/toddlers. I almost lost it the other day!!!
To everyone out there - I doubt anyone on TP would make this mistake, but I can just make it clear, CARING FOR SOMEONE WITH DEMENTIA IS NOTHING LIKE CARING FOR A CHILD!
There is no joy
I don't remember receiving all the "congratulations its a.... demented parent" cards when Mom came to live with me after her diagnosis.
There is no nursery school for dementia, just a day centre that I have to fight to get mom space in 2 days a week.
She will NOT grow out of this!
She is losing herself and I am losing my mother.

Please, please, please - don't ever compare caring for a demented adult with caring for a child. You may hear me screaming over the internet!!!
I am basically alone in caring for my mother. My father passed away 13 years ago, I have no siblings, am not married. My only other family is an aunt/uncle/cousin in Canada whom I haven't heard from in 2 years (I suspect when they get in touch - it will somehow be MY fault for not contacting THEM). My mother is not sure who I am anymore. I just spent 8 hours in the house with her, and she hasn't spoken to me once. She paces around, picking up books, putting down books and calling to her dogs (who, to their credit - follow her all day. Never underestimate the loyalty of a dog!).
This sucks. Sorry for the language, but it does. This person I care for is no longer my Mum. She is a shell. We have no mother/daughter relationship anymore. I am a provider of food, and a "bossy" person who tries to make her shower and dress everyday.
I have a job/career which I love/loath at the same time.

Thanks for reading my rant!! Thanks for starting this thread - giving us a chance to say the things we feel but sometimes are too embarrassed/guilty to put into words.