It's only the illness!!!

[suem]

We all have to put up with the trials of dementia. Our loved one's not undersatanding the simplist of things, having to repeat ourselves over and over again etc etc etc....its all part of the illness.

My husband has Parkinson's and Lewy body. When he struggles to get off the chair or is slow moving, I can accept it is the Parkinson's and will help him. But when it is something that effects him mentally, such as telling me there are people in the room or he can't remember something I said 5 minutes ago, I go mad. I get so agitated and wound up and can't accept it is the illness. Just think he is a raving idiot. I've tried to see reason but somehow I can't. This just makes me an angry carer which does not help either of us. My husband has been ill 13 years(3 with LB) so I should have accepted it by now.

 

[Brucie]

I've tried to see reason but somehow I can't

The problem is that there is no reason to see!

It is dreadfully difficult to handle, all this, and even those who think they have come to terms with it have times when they realise it isn't so.

I reckon it is the combination of worlds colliding, theirs and ours, with no common language, though they may look so, so familiar.... and our desperate wish that they could be back with us again.

We feel that if only we tried that much harder they would suddenly snap back to normal... which of course they can't because their 'normal' is no longer ours, and it is a moving target for all of us.

Frustration abounds.

 

[Grannie G]

Hi suem

You aren`t on your own, feeling more sympathy with a physical disorder that a brain disorder.

When I worked with Children with Secial Educational Needs, the children had Language Disorders and Communication Difficulties. Their disabilities caused severe behaviour problems, due to inability to speak so they could be understood, or an inability to understand.

The majority of these children were beautiful, and no-one could tell from their appearance there was anything wrong.

When we took them out, we shared the experiences of their Parents. There was little tolerance of their behaviour, and we were subjected to judgemental looks, indicating we didn`t know how to manage good behaviour.

This was completely opposite to the reaction of the public to children in wheelchairs. Wheelchiar users got sympathetic looks and smiles.

When my husband broke his arm, he was happy to receive sympathy from whoever offered it. He is embarrassed and very ashamed to discuss his Alzheimers.

This is how we are conditioned. Things are improving but we have a long way to go.

As Carers, we are tired. 13 years is a long time to have someone dependent on you. My husband has been ill for 5 years, but was diagnosed only last year. If it`s any use to you suem, you have all my sympathy.

Grannie G

 

[Cate]

Hi Suem,

Just to say we all understand how you are feeling, and yes it is the most difficult of illnesses to cope with / explain to the outside world, which you cannot do when tantrums occur in Sainsbury! God love you for coping for 13 years, you must forget sometimes that you are a person in your own right, and not just a carer.

Do try and find some 'me' time, something which I now plan to do on a regular basis (doesn't always come off) but just the looking forward to a cuppa out with a friend who doesnt want to talk about my mum (but bless her, with listen if I need to let off steam) always helps to cope with another day.

With luck and with the help our Webb Site, not only do we all support each other, even on our darkest days, (no one here will ever judge you) it also helps to spread the awareness which is all to the good.

Take care
Love
Cate

 

[BeckyJan]

You have my total sympathy Suem, I suspect you are more angry with the situation than you are with your husband - as they say 'its only the illness' (I hate being told that - only because I know it too darned well!).

As Grannie G has said 13 years is a long long time. You are bound to release your frustration sometimes. How do you manage with 'letting rip' with friends. Thankfully I have a few specials who I can telephone and just let go my feelings and what a difference that makes (much like rambling here on TP).

It is dreadfully difficult to handle, all this, and even those who think they have come to terms with it have times when they realise it isn't so.

How right Brucie is - some days I am really handling it and then on others for some usually quite trivial reason I just 'despair'.

Hope you get some comfort from TP. Best wishes Beckyjan

 

[Bets]

Amen to all the above!

Bets

 

[BillieJay]

Hi Suem
I just wanted to offer my sympathy. Don't beat yourself up over it, you've given your love and support for a long time.
As Granny G says, coping with a problem you can see is much harder than with one you can't.
The LB doesn't just double the caring you have to do. "The whole is greater than the sum of its parts" or something like that.... When he had Parkinson's, maybe you could deal with the physical manifestations together, and then get on with having a laugh, having a conversation. Now some of that's gone, are you feeling more alone? Do you resent him for putting an extra burden on you when you feel you're doing as much as you can already?
I'm no expert on this, I'm just trying to suggest a few ideas that might give you a bit of light into how you're feeling. I'm only starting on the journey, and maybe I'll get to the acceptance stage, but I always feel better if I have an explanation. It gives more of a chance to find a way to handle it.
Whatever answers you come up with or none, be nice to yourself, you've worked hard.

BJx

 

[Helena]

Hi Suam

It might only be the illnes but it sure takes one hell of a lot of coping with

If you are trying to do that day in day out its totally destructive of your emotions

Just a few hours of coping with my Mother has me stressed to wherever and fit for zero

 

[suem]

Helena
Think you just about summed up one of the problems. Caring for someone 24/7 even with some respite is not the same as someone that is cared for by someone else and you are able to walk away. I can't walk away...although I often wish I could.

 

[JT13]

It's sometimes ok...

Dear Suem,

Sometimes, it's ok. Sometimes, it isn't. At times, we feel we have the strength to go through the day, laugh at it. Other times, the slightest repetition pushes us across the line.

I'm on that roller coaster ride and this ride isn't going to be a short one. Sadly, I can't give you an exact answer to your frustrations because we're all going through the same thing. That's why we are so thankful for the existence of TP. It's a place where we go to, to find peers who understand exactly how we feel.

Just keep it close to your heart that we're always here for each other when the days get tough. Let our your frustrations, shed those tears because it helps for that moment that you need to feel a little better.

I wish you all the best.

Regards,
J