difficult time

[donkey]

dave had too be taken into hospital thursday, there had been amassive decline in his mobility and i couuldnt stand him and he couldnt weight bare. we are all distraught because at the last minute dave was turnad down for his place in residential care and now he needs nursing home.. we have found a loveley one 5 mins walk away which would be perfect for him but once again social services are trying to find cheaper alternative. i will fight this though. consaltants described dave has having FTD Parkinsons, and MND dave isnt aware of that but he is very anxious shakes violently and is clearly petrified. i cant believe that in just a few days i was able to assist to toilet ect and now they are having to use a hoist because of lack of comunication i have too be at hospital most of the time. i feel im greiving and spend most of time crying as does dave and for dave too cry its devastating too watch, he still clearly understands what is happening too him and still keeps indicating too end it for him. i no i have all your support and good wishes and im sorry i cant get on here much, its upsets me further to talk about it and read how you all are trying to do the same as me cope xx

 

[Izzy]

Oh Lyn I am so sorry to read this news. Your poor Dave. He must be so scared. I hope you get a suitable place sorted fir him soon. I'm glad you wre able to share on TP We will all be thinking of you both Take care of yourself. X

 

[donkey]

thankyou izzy we are also waiting results of biopsys that dave had from his flexi sigmoidoscopy last saturday they found too areas that wernt right but hopefully that was down too his constipation xx hope you and bill are doing fine xx

 

[Skye]

Lyn, I'm so sorry. Dave seems to be going downhill so quickly just now, just as John did. It's such a shock when it happens, and you must be feeling desperate.

Sending you love and a hug,

 

[donkey]

thankyou hazel xx

 

[elaine n]

Oh Lyn I'm so sorry. I know what a shock such a rapid decline can be and how hard it is to cope with emotionally. Like Dave, Gary was scared and cried a lot when he first went into the assessment unit and he also told me he wanted to end it all, he actually asked me once to cut his throat. I think seeing your once strong husband cry like a child with fear is one of the most distressing things to witness. If it's any consolation to you to know this, that phase did pass and he no longer seems afraid, possibly because he's declined further but if that brings him some peace I can accept it. Thinking of you, this is a difficult time for you now. xxxxxe

 

[donkey]

thankyou elaine, ive just been reading your thread and no you are in a similar situation to me my thoughts are with you too xx i am off to hospital now so will come back later xx

 

[elaine n]

I hope your visit isn't too distressing Lyn
Take care, lots of love xxxxe

 

[eastiesgir]

Oh Lyn I'm so so sorry to read your thread. I can't imagine how it feels to go through it and watch your loved one go through it.
My thoughts are with you
sending you love
x

 

[sussexsue]

I can really feel your heartbreak with every word you write. Even when you find a solution that might ease things just a bit, you have another battle to fight, and it sounds as though you are pretty much running on "Empty".

Take care

Sue xx

 

[Grannie G]

Dear Lyn

I feel so sad for you and Dave. The fear is the hardest to witness especially as there dioes not seem any effective form of comfort.

I do hope like Elaine`s Gary, Dave takes a further downwards turn which will ensure he no longer has as much insight into his condition.

Elaine, I`m relieved for you and Gary.

It happened with Dhiren who is now more contented than he has been for 10 years. I wish the same for you both.

 

[donkey]

i wish for the same sylvia, on arriving at the hospital for 9 oclock i found dave in a bed that was soaked from top to toe he had a bed pan half under him and a urinal atatched too his water workrs he was very disstressed i pressed the buzer and got things together for cleaning changing etc. eventually the nurse in charge came in and i completley let him have it of course he apologised but i said i knew this wasnt acceptable and was putting in complaint. the same thing happened yesterday plus dave had his breakfast on top of him. daves breakfast had been there an hour untouched because it was too far away. i was exploding inside but keeping things cool for dave he didnt see my tears but the nurse did. he ofererd to help but i said no i would do it as i had for so long so i totally stripped bed totaly washed dave from head to toe shaved him covered in talc and lynx i did get assistance for getting him in a chair then at 10 oclock he got his porridge thats anouther story and cup of tea but the tea went all down him and i realized he cant hold his beaker without shaking so now he has a beaker with lid and ive put a straw in. the girls are there now and im going back at 5 . it feels very strange sitting here without dave in his chair its hard to believe that he wont be backxxx

 

[elaine n]

Oh God! I'm sitting here thanking god that Gary has better care than your Dave. That's inexcusable! Thank heavens he has you to stand his corner Lyn! xxxxe

 

[Bristolbelle]

Just tos say.....

I'm thinking of you and sending you both my love

 

[Sox]

Hi - I am so sorry that things are such a struggle for you. The lack of care is inexcusable, but sadly seems to be the same in lots of situations. My husband was also diagnosed with Parkinsons just 2 weeks ago as well as AZ, so your post makes me rather scared as I know I will not be able to cope when he can no longer weight bear and I dread the thought of him going into care. He has no communication so I don't know how much he still realises, possibly more than I think, but I hope not. I do hope things improve for you both. Try to get some rest and look after yourself. Sox

 

[Grannie G]

There is no excuse for such lack of care Lyn and I`m really cross you and Dave had to experience it.
I hope you have the strength for a formal complaint and if not, perhaps one of the family can write on your behalf. xx

 

[donkey]

the visit tonight was quite stress full , i had to reley on a fantastic student nurse to help get dave on a comode then off again , it was a dangerous situation that had us both trying to get dave into bed aparantly the hca s had disapeared and there was noone to help, im glad daves state of uncontrolable shaking and rigidness was witnessed and they are now believing me that the best way forward for dave is too have a catheter fitted, its one less thing to stress about for him, i still cant believe how only three days ago he was sitting here with me and able to be helped to walk to the toilet , now he is incapablee to even stand with two of us, i think it will have to be a hoist from now on, the shaking is so violent that its almost like a sesieure,its every time he trys to move or be moved x

 

[larivy]

So sorry lyn to read how dave is it's discusting how the staff are treating him
I hope and pray that you manage to get dave in the home near you
It don't seem that long ago when we were talking about your patio steps now look at us thinking of you both love larivy

 

[Margaret W]

Scuse me butting in, I've nothing to offer but admiration for you all. I never got to this stage with mum. I don't know how I would have coped. Just remember that you can only do your best.

Good luck

Margaret

 

[donkey]

just a little up date, as promised daves bed was dry this morning but they had put enourmous pad on him, i managed to shower and wash his hair. he is still quite disstressed and types home and bored. i hope monday brings some news from social worker and now we have hospital S worker and own S worker working together and dave having anouther continuing care assessment. im not hopefull on getting that but if they didnt think he had any hope they wouldnt be doing it would they. well probably because if he did it would solve all there problems. have visited twice today and will be going with son abit later, good job we live round the corner. two of our children are down with a sik bug today and i hope i dont get it that would be dreadfull for dave as he needs me there most of time xxx