A life in the day of.........................

[Grannie G]

Thank you Hazel.

If anyone on this forum thinks I am in denial re the stage Dhiren is at, I honestly won`t be offended if they say.

I do understand how subjective we can be with those we love, when we try to see the best in them, and sometimes an outsider sees things fom a different perspective.

But I really don`t see him as a public danger or a danger to himself, yet.

I still believe his depression is the main contributor to his confusion and inappropriate behaviour. He is in despair and thinks his only escape is to get away from what he sees as the cause of his despair.

He is fighting for survival.

Deborah,
I will definitely see if I can get the GP`s support re getting a carer in, but I`m so afraid he`ll storm out, and I will make matters worse.
I am trying to think of myself, I have had contact with our local organizer of U3A, reccommended by Hazel, and am awaiting registration details.
I will go to meetings, leaving Dhiren alone, and keep in contact by Mobile, as I do when I go to the hairdresser, or for medical appointments.
Thank you.

[jenniferpa]

Sylvia it doesn't sound as if you're in denial, and even if you were, what difference would it make? All you're trying to do is a) make him happier and b) manage his behaviour. The former seems to be impossible: you can't really make another person happier if they don't have dementia: how can you do it with dementia in the mix? As for the latter - well it's an admirable goal, but I suspect equally unattainable. You cannot keep another person safe unless you cage them. You can try to minimize the risks but in the final analysis, even if they do have dementia, you cannot be totally repsonsible for that person's actions. Yes, I know you feel you should be, but you simply can't be.

Should you have more outside help, even over Dhiren's expressed objections? Well yes, I think you should have, but that's just an opinion. We don't have to live with the fall out. From the (very much) outside looking in, it would appear to most of us that you can't continue to exist like this: something's got to give. Your physical health is already suffering, and I can't even begin to imagine what it must be like from a mental health standpoint. I realise we only see the high points (or rather the low points) not the whole picture, yet living with someone who exhibits bizzare behaviour even in small amounts always impacts on rest of the family, particularly when the family is essentially one person. One adjusts one's behaviour out of love to accomodate the other person's behaviour and that can work for a while, but eventually one finds that accomodation is no longer possible. Perhaps you've reached this point, perhaps not. I do think your own health issues have brought this to a head: if you're in constant pain you really can't expect to manage this as well as you might without the pain.

You're in the exceptionally sad and depressing position of the disease having to get worse before you can really effectively manage his environment. You know it will come eventually, yet who would wish for that?

Dammit: if ever there was a use for a magic wand this would be it.

Love

Jennifer

[Grannie G]

You're in the exceptionally sad and depressing position of the disease having to get worse before you can really effectively manage his environment. You know it will come eventually, yet who would wish for that?Love

Jennifer

Thank you Jennifer, I think I`m wishing for it now.

Love xx

[Skye]

You're in the exceptionally sad and depressing position of the disease having to get worse before you can really effectively manage his environment. You know it will come eventually, yet who would wish for that?

Dammit: if ever there was a use for a magic wand this would be it.

Good post, Jennifer.

No, you're not in denial, Sylvia. You know your situation with Dhiren, much better than any of us do, and unfortunately Jennifer has hit the nail on the head.

Dhiren is used to you leaving him on occasion, and if this would be easier than getting carers in, then this is what you should do. You'll realise for yourself the day that this becomes inadvisable, just as you'll know when he becomes unsafe on the roads.

I hope you find some U3A groups that interest you, it'll do you good to have a break from AD.

Love,

[Natashalou]

Why not try and say the carer is for YOU. (Which in a way the carer is) Dhiren seems to notice albeit intermittently that you have a bad leg. Maybe he will accept it better if he believes the caring aspect isnt being directed at him?
Then perhaps he will get used to someone there and hopefully adjust a bit himself?

[Grannie G]

Thanks Natasha but he is too wily to let me get away with that.

Anyway, he`s supposed to be going away tomorrow again

Thanks for caring everyone.

Hazel, you know where I`m coming from.

I`m going to stop driving you all mad now and let you have some time for your own problems.

Thank you all very much for being so supportive.

Will keep you posted.

Love xx

[Brucie]

I think I`m wishing for it now

There is a strange, unreal yet too real and frightening time between the manageable and the unmanageable in this situation, in my experience.

We desperately want to cling on to what we had, because we know that, once we have lost the grip, it can't be quite the same again. More to the point, we have no idea just how it WILL be; we have only the direst fears.

We try to do every possible thing we can to help the person, yet they seem to be fighting us at every step of the way.

I remember thinking [and yes, we can shout in thought] "Jan, please let me help you... can't you just [do this] or [not do that].. please let us go on as long as we can, because even this hell may be better than the next one."

No matter how strong we are, in body, mind and love, there may come a time when there is no way else to go. We want things to get better, somehow, anyhow. We want the pain to get less, somehow, anyhow. And finally, we just want change, anyhow, but perhaps the only way for that to happen is for things to be taken out of our hands.

It is that standing on the edge of a precipice of exhaustion, fear, anger and tears that is so hard.

But we have to get there to fully appreciate all the options that might be available to us.

There could be a surprising turnaround with an assessment and a totally new medication regime enabling a loved one to stay a bit longer with us.

The SS etc may come up with something more in the way of support.

We may slowly come to believe that other options may be sensible, if not comfortable.

Sylvia, you are doing an incredible job in impossible circumstances. Take things a step and a day at a time, if circumstance permits it.

From my recollection Jan and I hit this sort of point three times before what I thought was the worst happened, yet it proved to be the best thing for both of us, given the impossibility of the situation, and we are still both there.

[Grannie G]

Dear Bruce, Thank you.

I knew you`d been where I am now, but I didn`t know you`d been there 3 times.
What a daunting prospect.

This evening I asked Dhireen if he`d make dinner. He made smoked haddock, mashed potatoes, peas and spinach. It was delicious, well flavoured, buttery and steaming. The kitchen was even tidy too. And he`d managed to find everything.

So we sat down to eat and I asked if he was feeling better. He said he felt fine, but he`s still going away tomorrow, I might think I was being clever trying to trap him into staying, but mark his words he was going. He doesn`t know me any more I am hard and cold and he will go to his real family where people will talk to him and welcome him and on and on and on...............

Now he is having a sleep and tomorrow is another day.

[sue38]

Hi Sylvia,

Just catching up on the latest on this thread.

Not sure I have anything useful to say, but just wanted to let you know I am thinking about you and Dhiren.

It is so hard when someone in many ways is so capable, buying train tickets, cooking dinner etc., and you feel so awful wishing that they were less capable and then you could protect them more easily.

If you feel that Dhiren is not a threat to his own safety, or those of others, I think that locking him in the house or taking his cards off him may only make matters worse. Is there anyone who can calm Dhiren down? I know my Dad loses it with my Mum, but he will talk calmly to me or my sister, even when my Mum did lock him in the house.

I get the impression that Dhiren is quite a proud and private person and may not easily talk to others. It sounds as though the GP is a good place to start as he has Dhiren's trust. My Dad has to a certain extent lost his trust of my Mum (just too close) but still trusts me and my sister.

Sending you HUGE HUGS!

Sue

[Brucie]

but I didn`t know you`d been there 3 times

...but on looking back, by golly Jan was/is worth it.

From the words you use in all your posts about Dhiren, I'd be guessing that will be your verdict about these times, even if not now when you are so stressed.

Good job you didn't pre-advertise the menu tonight... I'd have been knocking on the door, cutlery in hand.

Take care.

Let's pray for a national railway strike tomorrow.......

[connie]

Sylvia love, thinking of you.

May not hep you but we went through a patch where Lionel went to the GP and told him that I had thrown him out of the house, taken his money, and he needed help to return 'home' to Kent.

I was sat indoor waiting for him to come back after his walk!

No, no help to you at all...................but you will get through this, with love and infinite patience. Remember, we are always here if you need us.

[Amy]

Sylvia,
Sorry if I said the wrong thing earlier - but you answered the questions. Dhiren is still not a danger to himself or others - so you have not yet reached the point where he needs to stay in.
You will get through this - enlist what help from family and friends and professionals that you can.
Love Helen

[alfjess]

Hi Sylvia

Sorry, I have no words of wisdom, so therefore I'm no help, but just want to let you know I'm thinking about you.

I hope things calm down a little and your hip becomes less painful.

Could you try gradually introducing Dhiren to carers?

Take care of yourself
Alfjess

[Nell]

Dear Sylvia,

I cannot imagine how you are coping. I know it is annoying when people say "I don't know how you do it!" because all we can say is "Because I have to!". But I HONESTLY do not think I could survive what you are doing for Dhiren.

I was sobered by Jennifer's post about the train but I still think it might be worth trying. The railways have a "duty of care" to passengers and, in Dhiren's case, the duty of care is to protect him from the dangers of unsupervised rail travel. "Duty of care" is a big part of public responsibility, so even hard hearted railway employees might think differently if it is put to them in this way!

I guess the hardest part though is the curtailing of Dhiren's freedoms. Bruce's post seemed so apt, especially this bit:
I remember thinking [and yes, we can shout in thought] "Jan, please let me help you... can't you just [do this] or [not do that].. please let us go on as long as we can, because even this hell may be better than the next one."

Sylvia, do try to put yourself first - at least some of the time. I have no idea how, but U3A is a good idea. It has been great for my (retired) hubby.

Please know that you are loved, admired and respected on this forum - and no-one is a greater fan than me!!

[Grannie G]

Thank you again, to everyone.

I was awake at 3.45am and Dhiren got up at 4am. He couldn`t find his wallet, looked everywhere, was accusing me of taking it. I told him all the places to look, no success. So I went to help him and it was in the drawer where it usually is.

He was so angry, accused me of hiding it there, threw the wallet onto the chest of drawers, jumped up and down in temper, hit his head and hit his chest in a rage. I told him to thank me for finding it and he calmed down immediately.

This is the first time I`ve seen this behaviour.

I think he frightened himself.

Now he is calm and is making us both a cup of tea.