anouter detereation

[donkey]

just when i think i have things under control something else crops up and i realize how fragile i am. have mentioned that ive cut hours at work , dave goes day centre 3 times a week, has a home visit 1 day and goes phisio 1 day a week. ive just had patio lifted and relayed on a slope as dave canout negotiate 3 inc step onto lawn. saturday i said come on dave lets try the patio out. he needed help in geting out over the door step but did manage to walk down the garden but coming back in the house was a nightmare and was a good job i was behind him. we tried half a dozen times but it is totaly unsafe even though we have rails both sides he just cant lift his foot over the step in and would fall back . dont no what i can do apart from putting a grab rail on kitchen work surfice for him to pull him self in, not a good idea if im not behind him. dave can no longer look up or down without moving his head , im sure this is why he keeps walking into things and poors water onto the floor thinking its going into the sink. he says his memory is going and i think he means short term but because he cant speak its difficult to tell. his talking aid is difficult to use now as he cant spell and dosnt no what he wants to put.. to top it all my 18 year old has lost so much weight docter has put her on antideppressants for stress. i feel so alone as daves illness is described as uniqe and i cant find anyone else who is experiencing all of the symtoms dave has and nither can his doctors consaltants and everyone else involved in his case the latest being the day centre workers im wofling again and do no you all care and give me lots of support xxx

 

[larivy]

really sorry to hear of Daves down turn sending you a big hug

 

[Helen33]

Dear Lyn,

I am so sorry Lyn that you feel so alone with all of this but glad that you feel somewhat supported by Talking Point. I wouldn't know what to suggest with regard to safety for Dave outdoors Hopefully someone will come up with some useful suggestions. I never was a very practical person

Sending love and a (HUG)

 

[donkey]

thanks larivey, you trying to say we are a couple of asses

 

[BeckyJan]

Hi Lyn:

I recognise what a difficult time you are going through. Not sure I can help although I would love to do more.

I hope you are being honest wth the Consultant about how you are coping - please give them the worse scenario not the best.

Thinking about you. Best wishes

 

[Helen33]

You posted at exactly the same time as me Lyn!!!

 

[larivy]

well i never thought of that but now you have said it i think we must be

 

[Skye]

Lyn, I'm so sorry it's so hard for you just now. It's awful to watch our loved ones deteriorating day by day.

Could you get the physio to come out and see what would help Dave get about? Perhaps there's a way to make that step easier for him.

It sounds as if you're exhausted Lyn. Are you getting enough sleep?

Sorry, don't know what to suggest, just wanted you to know I'm thinking of you.

Love,

 

[donkey]

thanks helen, i find it very difficult to understand how quickley that dave is progressing, im still thinking of cortical basal and that seems the only answer, the outcome is a very quick progresion and that is what im seeing at the moment, every day dave can do less than he did the day before and it is torture for him. he knows he wont be able to go in the garden anymore unless someone helps him. xx

 

[Amy]

Would it be possible to have a ramp with rails? Would he be able to manage that? It must be so hard for you not having a proper diagnosis.
Best wishes
Amy

 

[TinaT]

I know its more expense which you can certainly do without but I've got a sliding metal door into the back garden. It has struts in the shape of diamonds and slides back on itself on little ridges at the top and bottom. I used this to let air into the room in summer but know that Ken couldn't get out into the garden by himself.

I think you will always have to be with him going around the garden. Ken has Lewy Body disease and had so many movement problems very similar to which you have described in your post. I had to have the garden modified for him and thought it might solve the problems but it didn't.

Please don't think you are alone, We all have differing problems to deal with but there are also so many similarities that we can very well understand what each other is going through.

Keep your spirits up.

xxTinaT

 

[Helen33]

Hi Lyn,

Does this mean that Dave will be given Continuing Health Care? I am wondering whether he would be allowed extra carers to help with his rapidly progressing care needs.

Big HUG x

 

[donkey]

thanks hazel for caring , im going to phone ot tomorrow and ive looked on the easy access site, the problem is dave canot lift his right foot and trips on anything and with the upvc theres quit a big ledge to get over. i had just ordered two big wooden chairs for the garden so at best i can put one by patio window and open door. i took him a walk in wheel chair at the weekend nearly killed me and dave never aknowledged wether he enjoyed getting out or not xx

 

[larivy]

how about a ramp instead of step ot should be able to help
dont know if this will help but when mum found it hard to do things because of her MND the ot recommended having a possum (not the animal ) put in its a machine that mum could control with her foot she just had to press a button it goes through a load of comands like turn telly on, turn telly over listing channels , phone and a list of people, answer phone, plus you can have alot more put in it you just have to press on what one you want love larivy

 

[willsar]

Although no expert, surely Dave is not unique, I struggle daily since my husbands sudden decline with his balance that can be thrown off by anything, step, slope, bed ANYTHING!! I spend my life picking him up, rebalancing him, comforting him, shouting at him when I really cant cope anymore Please I feel sure you are not alone in this that it is the medical professions wish not to listen. Love and hugs to you. xx

 

[donkey]

daves just had a fall in toilet after soaking floor washing his hands. had to prise my way in a 5 inch gap and luckily son was here to help lift him hes tucked up in bed now. im on tender hooks all the time. helen whats continuing care ive got appoitment at daves gp on my own on thurs so shall i ask him.xx

 

[willsar]

Any comfort that our 19 yr old son struggles with his fathers decline and probably the effect it has on his mother as with your daughter And we struggle because of the effect it is having on our children!. You are not alone in any way, I am just not good at words to help!I wish I was. XXX

 

[willsar]

Oh love to you I have not long with my sons help got hubby off the floor again whilst trying to get to toilet, probably to leave tap running or flush toilet endlessly. Dont feel alone we are all there.XX

 

[Helen33]

Dear Lyn,

Continuing Health Care or Continuing Care means that Dave's needs are financed and it is not means tested. I am not an expert in this as Alan was granted it automatically after he had the stroke. I wonder whether you would be up to ringing the Alzheimers Society's helpline tomorrow and asking them? I do know that some TP members are very expert and they may offer their advice. Just the fact that Dave has fallen is a factor that is considered when going for CHC.

You must be on alert so much of the time and I am just hoping that you get some rest.

Please let me know how you get on with your enquiries.

Love

 

[donkey]

wilsar dave dosnt just have problems with his mobility, he canot speak any more so cannot comunicate but he has awareness of his problems which he cannot express his feelings.daves consaltant has looked all around the world and done everything he can to find out why and what dave has , and all of daves mri spect and every other one he has shows multiple problems with his brain. tina i will look into the ramps but our house is very high so it would have to be a very long one and the problem is more getting in and out over the threshold, coming back in more so because he has to let go of rails and topples back trying to get himself in the rails council fitted 2 years ago were great up untill a couple of weeks ago xx