difficult time
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loveley to hear from you helen and am sorry about the memories it must bring for you of allan, i often thinkhow similar they are. dave does qualify for CHC we are now waiting for the PCT to agree too it and find out if they will fund the home we have chosen. sylvia it amazes me too that dave can still text, only one word now though, he always used his phone to call me in emergencys, now it is used for all the photos we have put on there. he can stall plays draughts and four in a row. he was very sleepy today have been twice and will go back at 6. no news today hopefully tomorrow xx
Hello Lyn,
Don't you worry about the memories it brings back. I love remembering Alan even when it was tough
It really amazes me what your Dave is capable of doing. These diseases really are puzzling in how they affect each person differently. It must make training really difficult!!
Love to you and yours. x
Don't you worry about the memories it brings back. I love remembering Alan even when it was tough
It really amazes me what your Dave is capable of doing. These diseases really are puzzling in how they affect each person differently. It must make training really difficult!!
Love to you and yours. x
thanks annie and helen,. the worst part is that dave is trapped in a body that wont work but his mind does, it must be torture for him, ive never seen him cry so much and even that he cant do properly. i hope something happens tomorrow, i cant bear this anylonger for dave or me. he is going on a new named patient drug called LMTC but cant untill hes out of hospital and he dosnt understand why, well i dont either really surley thats the best place to trial it, might phone tomorrow and say we need it now xx
wanting to go home
Ray used to ask the staff to ring me to take him home. Now they give him an old mobile and he just carries it around in his pocket.
It is so sad when those downturns in health come, we know they will but we still seem unprepared and a little scared when it comes.
Thinking of you but not posting a lot right now.
Sue.
Ray used to ask the staff to ring me to take him home. Now they give him an old mobile and he just carries it around in his pocket.
It is so sad when those downturns in health come, we know they will but we still seem unprepared and a little scared when it comes.
Thinking of you but not posting a lot right now.
Sue.
Morning Lyn,
I wanted you to know that I am thinking of you this morning and hoping that the new drug will help in some way. What you are experiencing is very traumatic and I hope that you will take the best care of yourself. I think you are doing amazingly well under the circumstances and if you could see yourself (like in a film of your story) then you would know how well you are doing. It doesn't mean you don't feel shocking at times and very frightened and vulnerable but it does mean that despite these feelings you 'run the gauntlet'. Because of this you need rest, rest and more rest if you can and anything you can do to try and find some peace of mind.
Big (HUG) x
I wanted you to know that I am thinking of you this morning and hoping that the new drug will help in some way. What you are experiencing is very traumatic and I hope that you will take the best care of yourself. I think you are doing amazingly well under the circumstances and if you could see yourself (like in a film of your story) then you would know how well you are doing. It doesn't mean you don't feel shocking at times and very frightened and vulnerable but it does mean that despite these feelings you 'run the gauntlet'. Because of this you need rest, rest and more rest if you can and anything you can do to try and find some peace of mind.
Big (HUG) x
thankyou so much helen, no news yet today, i phoned today about the new tablets but dave cant start them untill hes out because they think the hospital will loose them and it needs careful monitering, i do agree with them and even though its not a trial drug its not licienced yet. i would be interested to here if anyone on here is taking it, its called LMTC XX
Hello Lyn, I'm so sorry to read about Dave's progression. I'm sorry but I've never heard of LMTC and can't seem to find much by googling either. I'll keep looking.
I hope you have some positive news today, it must be so wearing waiting for people to make their minds up.
Kind regards Deborah
I hope you have some positive news today, it must be so wearing waiting for people to make their minds up.
Kind regards Deborah
Dear Lyn
I have been catching up with your thread and am so very sorry and sad to read what you and Dave are going through, it is heartbreaking. Yes the tears are devastating, you feel utterly helpless to give comfort, reassurance, when there is awareness causing such anguish and despair. I know when Henry was going through this in hospital my pain felt unbearable but for him it must have been beyond description. A situation can change so rapidly, it is frightening.
Wish I could offer words of comfort, although I can empathise and sympathise as I am sure others can.
Yes, you do have support here from so many, good wishes, and more. Don't apologise for not being here much, but keep writing when you need. Letting it out can help to ease the stress and tension when you are living with so much trauma. I can't imagine at all how I would have got through it without TP, the caring support given by so many.
I want to say "take care of yourself" but know how difficult that is when your entire focus is Dave and your mind is racing, not to mention your heart aching. But I hope you are managing some rest, when possible, especially sleep.
My thoughts and heart are with you,
Love
Loo xxx
I have been catching up with your thread and am so very sorry and sad to read what you and Dave are going through, it is heartbreaking. Yes the tears are devastating, you feel utterly helpless to give comfort, reassurance, when there is awareness causing such anguish and despair. I know when Henry was going through this in hospital my pain felt unbearable but for him it must have been beyond description. A situation can change so rapidly, it is frightening.
Wish I could offer words of comfort, although I can empathise and sympathise as I am sure others can.
Yes, you do have support here from so many, good wishes, and more. Don't apologise for not being here much, but keep writing when you need. Letting it out can help to ease the stress and tension when you are living with so much trauma. I can't imagine at all how I would have got through it without TP, the caring support given by so many.
I want to say "take care of yourself" but know how difficult that is when your entire focus is Dave and your mind is racing, not to mention your heart aching. But I hope you are managing some rest, when possible, especially sleep.
My thoughts and heart are with you,
Love
Loo xxx
thankyou for your support, ive good news today, yesterday i had a phone call to say PCT are funding dave for CHC and dave will be able to go to the home we have chosen. its the best news ever and dave seems happy about it, he gave the thumbs up its only a few minutes walk away from our home so we will be able to wheel him home in his wheel chair. he could possibly go friday or monday so it gives me time to make his room nice and homely for him. i cant quite believe this is happening and we can all start to relax and have some sort of normal life again. i no there will be problems settling dave but i no that i can cope with that, and knowing he will be able to pop home on a regular basis will help dave to adjust xx thankyou for all your kind words. xxx
its only a few minutes walk away from our home so we will be able to wheel him home in his wheel chair. he could possibly go friday or monday so it gives me time to make his room nice and homely for him. i cant quite believe this is happening and we can all start to relax and have some sort of normal life again. i no there will be problems settling dave but i no that i can cope with that, and knowing he will be able to pop home on a regular basis will help dave to adjust xx thankyou for all your kind words. xxx
Thank goodness for that Lyn. Its good you have a place for Dave near your home and he has given it the thumbs up too.
Take care of yourself and let us know how things go.
Take care of yourself and let us know how things go.
thans jan i will let you all no as things progress over the next few daves, its daves birthday friday and i suppose it would be good if he got out of hospital by then xx
Morning Lyn,
WOW that's brilliant news and I bet you are chuffed to bits
Regarding the drug, it could be possible to contact the professor from the American FTD site. One of TP's members did this once when information wasn't available here and they did respond. I'll try and find the link for you and if you want you can take it from there.
I hope you have a good day preparing Dave's room.
Love
WOW that's brilliant news and I bet you are chuffed to bits
Regarding the drug, it could be possible to contact the professor from the American FTD site. One of TP's members did this once when information wasn't available here and they did respond. I'll try and find the link for you and if you want you can take it from there.
I hope you have a good day preparing Dave's room.
Love
Really pleased to read your news today Lyn. So glad that Dave will be in the home of your choice, and so close. That is going to be such a boon to you both.
Love from Deborah x
Love from Deborah x
thankyou helen for the link ive had a look and find it very interesting. on thursday and friday i walked dave home in the wheelchair and friday was his birthday, 57 and dave had a lovely day at home with his family. trouble was it was all up hill and ive now pulled my neck so havnt done this again. this morning dave phoned and text me at 8.15 saying on toilet chair cant real i took this to mean he couldnt reach his buzzer and was on a commode so i had no choice but to go too his ward after noone answered the telephone. i arrived at 8.45 just as they were putting dave onto a chair. well he had been sitting on commode since 7.10 with no clothes on and no buzzer. as you can imagine i went barmy broke down in tears and had everyone rushing round too appologse and bringing me cups of tea. lots of things have happened since dave went in and now i have documented everything and the complaint is going in. im ashamed i work there. its basicaly 2 or 3 staff letting the whole ward down. 1 incidence was that i had spent all day taking dave to the toilet and noticed a massive scraze down his side. i called the HCA in and showed her, it was caused by the cricket hoist and dave cant sit on the sling without catching his back on the metal at the back. i asked her have you been in here today since 8 oclock when you got him up she replied no he hasnt buzzed. i replied well he probably wont because he has dementia , she said ive only worked with him twice so dont no him..... this was after onanouther occasion i had to tell her not to speak to my husband like that and hoped her family never had to go through what we have.... since the episode of the injury and not checking on him she is not looking after dave anymore because i said i didnt want her anywhere near him. after this morning after i had got myself together and left the ward i walked straight into the consaltant who saw dave right at the begining, well i fell into his arms he is such a compationate man who did everything for dave at the verystart of his illness and got dave refered to the right people. we are so blessed to no him and he came back on the ward to see dave and gave him a hug and shook his hand , dave didnt remember him though but did manage a smile. anyway hopefully dave will be going to the home on tues or weds, his room is looking nice and today me and son installed a 32inch tele and dvd in there, hope i sleep tonight i keep waking in a panic on the hour every hour goodnite everyone, sorry this is so long but think im just letting it all out xx
xx
