im stuck and cant seem to go forward

[MarieM]

Hello again, my dad has just had his results and has been diagnosed , with alsheimers , early stages , ie : forgetting , names, people ,places , time ,, he lives at home with my mam and i am round the corner not even 5 mins away , the doctor at the memory clinic said he would be quite happy to send my dad home and see him again in 6 months, which we were pleased about ,but i read on here peoples posts , and they all say the same when they say nobody knows what somebody will be like 6 months down the line , my mam and me are his main carer's and altho he is not the same man he was a year ago he seems to be happy enough ,so therefore i have not informed social services or any 1 else of my dads illness , do i need to ? or can we just go on like we are ? i feel i should inform some 1 but my mam says we dont need to we can manage. im going on holiday in may was booked last year before we knew dad was ill , and now we have had the diagnosis i feel so guilty leaving them for 2 weeks , even tho my sister is only over the road , im terrified i go away and come back and he has got worse , and i get so angry sometimes because nobody can put a timescale on this disease WHY ??? it does my head in , when people have cancer they are given periods of 3. 6. 9. 12. months to live etc etc !! sorry for ranting but i'd just love to know WHY !!!!! I think i'd rather have heard your dad has cancer and has about 6 months to live .

 

[leslin48]

hi marie, i know just what u mean,although i have lost some close family members to the dreaded cancer,a terrible disease,like u say a time limit was given to them, but with dementia we are in limbo, my mum has had it for 2 years i did try my best to look after her but could not manage any more and sadly she had to go into a care home, as each week goes by she is getting worse, this might sound horrible but i pray that the end will be soon not for my sake but for hers, i will miss her so much, but saying that, i lost my mum when the dementia kicked in, and as we know this disease could last for years, my heart goes out to you, and u are in my thoughts.

 

[Tender Face]

Marie – your post struck such a nerve with me. My own mum’s diagnosis was one of the most difficult times to deal with. It is a ******* of a disease that you may get a diagnosis but no prognosis. (And then you wonder just how long it started before even being diagnosed!!!) No-one knows. And the not knowing what you are up against is the bit – for me – drove me crazy until I learnt to live with the ‘not knowing’ (I hope that makes some sense?)

I’m going to suggest two things – first, you get yourself off on that holiday. Enjoy it, don’t feel guilty – and any minute you do, tell yourself you are just charging up the batteries for what may come or not. The diagnosis is not good, of course, but it does not mean, from what the GP has said, you are needed immediately and must start thinking about sacrificing everything if you chose to .... . had there been a real grim prognosis with some immediacy I would be saying otherwise.

Be prepared for when you come back things will seem worse. It is natural to note changes when you have been away for some reason. I couldn’t see things happening under my own nose with my mother at times when others could .... the difference in 2 weeks – 2 months – even 2 years in some cases – was so significant to others not living with it and observing (or not) day in day out.

Taking some time away from the situation may help you think more clearly about the whole impact of this diagnosis.

Dementia does not negate cancer – or anything else – happening to sufferers either. No-one can know if they jet off for a holiday what might happen to family ..... dementia or not .... and cancer sufferers can beat all the odds just like dementia sufferers do at times .... horrid, horrid, horrid – it’s about learning to live with it ..... making the most of every precious day you have left ... if that precious moment is just sending a postcard to let someone know how much you love them while you take care of yourself .....

Karen, x

 

[nicoise]

Hi MarieM,

Tenderface gives some good advice there - make the most of your break, it will not make the situation any worse, and it is really important that you grab any opportunities that come your way to recharge your own batteries.

A diagnosis just gives a name to a list of problems, it is not the end of the story. How it will work out is unknown, but the solutions to the problems will become more obvious as the story unfolds. It is very difficult to make decisions to cover every eventuality until you really know what the problems are that you need to tackle.

You've just heard news you never wanted to hear, and its scary. However, and your sister and your mum will cope for the two weeks you are away, it is highly unlikely that anything will happen in that time that you being there would be vital. And put away that guilt - you can return the favour to them by covering care for your dad if they want to have a break in the future.

Best wishes

 

[Tolkny]

i have not informed social services or any 1 else of my dads illness , do i need to ? or can we just go on like we are ? i feel i should inform some 1 but my mam says we dont need to we can manage

I guess what we each do is our choice, my experience is struggling to know what choices are best for all concerned and what actions can I take to get them in balance and not leave me exhausted and useless.

I see there is some relevant stuff - well relevant to me in the fact sheets of the Alzheimer Society - others reading this may find them useful, in as far as they reflect similar situations and concerns for you.http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=124

http://alzheimers.org.uk/Caring_for_someone_with_dementia/

It might be worth talking to someone on the Alzheimer Society's Helpline, to help the holiday not be a time of feeling guilty for going. Further information
Alzheimer's Society helpline

If you have any questions, or require further information, please contact the Alzheimer’s Society helpline.

England and Wales: 0845 300 0336

Northern Ireland: 028 9066 4100

 

[Margaret W]

Marie

No-one can give a prognosis of how this disease will progress - and it's the same with cancer. The standard time given for cancer is 6 months. The person might live less than that, but statistics show that they often live longer. My dad had a prognosis of 6 months and lived for 18 months. He didn't even die of the cancer. My daughter's sister in law, age 34, was also given a prognosis of 6 months, and we fully expect her to live for many years, since the wonderful news last month of the "all clear". Who knows?

Take heart, Marie, and see what happens, and I hope it is positive for you.

Margaret.

 

[DeborahBlythe]

my mam and me are his main carer's and altho he is not the same man he was a year ago he seems to be happy enough ,so therefore i have not informed social services or any 1 else of my dads illness , do i need to ? or can we just go on like we are ? i feel i should inform some 1 but my mam says we dont need to we can manage.

Hello MarieM, I'm very sorry to read about your dad's diagnosis and the worry you are going through.
You ask if you should inform Social Services and in answer to that, I think yes, it would be a good idea. Your dad could have a community care assessment through Social Services which would look into the support that your dad might need now and get him firmly into the system before things get worse.http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

You and your mum would be entitled to a carers' assessment (see the same factsheet) which will be handy for the day when your mum and you feel that you need mores support.

I would say contact Social Services sooner rather than later if only because they tend to move terribly slowly and sadly there is no doubt that at some stage the situation for your mum and dad is going to go downhill.

I hope this is helpful.
Kind regards Deborah

 

[Tolkny]

The standard time given for cancer is 6 months.

By whom?

I would think it is a VERY individual thing.

 

[Liz Saunders]

From experience, i found the help from my CPN was brilliant, i had been struggling to cope with my Mums increasing anger ( hitting out, insults etc) and she talked me through it and gave some great tips. I suppose it depends on the CPN, we sold our houses (Mum & Dads and mine & my husbands) and live together, after we moved the new GP got me so much help. New district=better help. As for going away, i did, worried ofcourse but you must think of yourself as well, a holiday will make you able to cope better on your return and i am sure he won't change much in a week, this illness is a slow one, unfortunately xxx

 

[MarieM]

dad is getting worse

hi again i would just like some advice as to what we should do next, my dad over this last week seems to be really getting worse wih his memory , and recently had a fall in the garden , he still thinks he can do the things he used to do he was trying to get the bin in , i was outside within seconds as i knew hwe would try to do this i said leave the bin dad i;ll fetch it and as i went for the bin he walked back up the path and fell on the drive i couldnt stop him from falling altogether tho i managed to jump infront of the garden wall and his head caught my lap , but he scraped all his elbow anyway, me and my mam are his carer,s he wont sit still now for more than 5 minutes and when he is getting up he loses balance and we are fearful of more falls . he is a big man and we are very small so its quite a task to keep him up when he does wobble , he has a stick but forgets to use it so im now sat with him constantly round the clock from 7am till he goes to bed at 7 pm , then im awake into the early hours listening for him getting up to use the toilet i dare not go to sleep incase he falls , he is very unsteady on his feet now and there is also a flight of stairs to his bedroom my biggest fear is him falling on the staircase , i go up the stairs behind him everytime he needs the loo but if he toppled over im afraid we woud both be injured im past myself , i havent been outside the house for nearly 3 weeks now cos i darent leave my mam and dad alone incase an accident happens , we had a social worker come to the house for the first time last week and he said he would look into getting some hand rails put on the side of the front door, and ive also voiced my concerns about the bathroom he is struggling to get in and out of the bath now my mam goes in then bathroom with him but he is to big for my mam to manage by herself , he will not allow any 1 else in there with him as he is early stages and knows whats what , s/w said they will get some rails round the bath , i think it would be better if he had a shower with a seat maybe , and would definately benefit frrom a stairlift , but i dont know how to go about getting this done and dont even know if we could , he wont have carer's in and we dont think thats nessascary just yet but do need help with the saftey side of things and just this week alone i and my mam are absolutely worn out following my dad round for 12 hours a day making sure he doesnt have another fall , but as im sure you are all aware of he wont sit still he is up and down all the time unaware he is very unsteady on his legs please any advce would be very helpful. im getting about 3 hours sleep a night and i know my mam isnt getting the rest she needs either so im worried about her to. who do i talk to apart from on here well no-one really they all think we are coping but really we aren't and as i said its early days yet , but i am sick of hearing m own voice repeating the same thongs over and over again and then within minutes he has forgotton what we have said .im very depressed and dont know what to do .

 

[Tolkny]

Oh dear, MarieM and family are having it tough.

Sounds like more than hand rails are needed.

I reckon it is time to make a call to the Helpline mentioned up thread and perhaps to Social Services again, as well as to the local branch of Alzheimer's Society.

Those with Alzheimer's reach a point where they do not have the understanding to know what is best for them and Carers carrying on without enough support can become worn out until they have little energy left to decide the best way forward.

I do hope that extra help can be found very soon.

 

[Grannie G]

Hello Marie

It`s time to get social Services on board. Phone up and ask for a carer`s assessment for your mum. Someone will talk to her about the difficulties your dad presents and will tell your mum what help is available.

Your dad probably thinks he is still able to walk steadily. My husband forgot he needed help and he too kept falling.

Your mum needs help now.

 

[Jackcat]

Yes, you need some help. Our social worker was organised by the consltant who diagnosed Mum, it was done through a community nurse type of worker attached to his clinic if I remember rightly, but a GP can do that too, or you can ring them direct. They organised all sorts of things for Mum, some of which she felt she didn't need and objected to, but which give us peace of mind (telecare, heat alarms, stair rails, etc). The assessment processes are not as bad as you might be fearing. Be prepared for your Dad pretending everything is ok, and don't cover anything up - tho' you may need to tell the assessors about it privately to save his embarassment.

 

[Christin]

Hello Marie, I am so sorry to read that your dad seems to have become worse quite recently and is at risk of falling. You did well to step out and prevent him hitting his head.

You have good already, do please ask for a carers' assessment.

You may also find that your local Occupational Therapist is able to do a home visit and offer advice. We not only had rails, but a frame around the toilet, shower stool, bathroom stool for the sink, a bed rail for FIL to grab hold off as he got out of bed, and a commode in his room (which to be honest he refused to use but it was there). They also provided a zimmer frame for him. You should be able to contact them through your local hospital.

Very best wishes to you all. Please let us know how you get on. xx

 

[chucky]

My friends dad died 6 years ago, my dad has dementia in a care home. We both think the same thing,she wishes her dad was still alive even if he had dementia, i wish my dad would pass away rather than live with dementia. We both want our dads back. How can you put a timescale on that?