who cares????????????

[tamia]

25 years ago I tried to obtain help advice anything concerning autism for my son to no avail, a few years down the line with my second son with learning difficulties I faced the same results , yes life was very hard bringing up 2 boys with problems and left to my own devices.
Last year my 21 year old daughter suddenley went blind with all 3 adults at home life was becoming a nightmare but again even with me undergoing 3 back surgeries and my husbands medical history we have coped.
Now the nightmare is here to stay, in the last few weeks my husband has been diagnosed with AD seemingly having had it for years I have been aware that discretly my husband has been suffering and because of previous commitments I just did not pay attention for this I feel beyond guilty.
I have absolutely no idea what to expect although because I have coped and had all the answers in the past my husband is convinced I can answer his constantly repeated million questions, In the very limited time to myself I have found this site which seems very informative (if I had the time to read) but the one thing I did pick up on is (taking care of the carer take care of yourself) the question I have is WHEN?.
To top it off being a novice to computers for obvious reasons it took me 2 hours the past 2 evening to post this message.
Is there anyone out there who is full of remorse for wanting a little time alone?
Now I have had a whine I better get back to work.

 

[May]

We Do!

Hi Tamia

Welcome to TP... You can find support ,info and a 'virtual' shoulder to lean on here. All contributions valued, we're all 'ordinary folks' trying to cope the best way we know how. We come on the boards to share the highs and lows, and sometimes just to blow off steam and have a 'rant'. It helps Do make time if you can, to come back and join in.
Take care

 

[connie]

Dear Tamia, who cares............we do.

Whatever you are feeling, I am sure someone here has felt the same............a new world, only someone has tread those steps before............ strange new world.

We are here for you, don't despair.

 

[mel]

Hi Tamia
Welcome to TP

 

[Helena]

Dear Tamia,

Life truly has dealt you a rotten hand of cards and you really do have to try to find a way to give yourself time

I would definitely be banging very hard on Social services Doors until i got the help i needed in your situation

 

[Áine]

hi tamia

Now the nightmare is here to stay, in the last few weeks my husband has been diagnosed with AD seemingly having had it for years I have been aware that discretly my husband has been suffering and because of previous commitments I just did not pay attention for this I feel beyond guilty.

hi tamia ....... welcome to TP. hope you get the hang of using the discussion forum quickly. there's lots of support around here ...... and the wonderful thing is that you can log in anytime, in the comfort of your own home, and find friends to care for you and support you.

your comment about guilt struck me ........ hindsight is a wonderful thing. i've been struggling with guilt about not recognising my dad's difficulties earlier ..... though even when i DID, it was a devil of a job to get social/health services to believe me and do anything about it. despite the guilt i think there's a reality that we could only do what we were able to do at the time. it's all very well looking back on it and thinking what we might have done ........ but i guess really we did the best we could. hindsight tends to filter out the 1001 other things we were trying to cope with THEN. we can only act based on what we understand and can cope with at the time ........ not what we NOW think we should have done differently.

kind regards

Áine

 

[Bristolbelle]

I share your expereience

Dear Tamia, how my heart went our to you. Your expereince is so similr to mine. I have two teenage children with disabilities. My daughter (18 in two weeks) has mild spins bifida, mild hydrocephalus, hearng impariment, Reflex Sympathetic Dystrophy and suspected ASD, my son (16) has Reflex sympathetic dystrohy as well. My husband has been unwell for many yeas with a whole range of conditions and is waitng for the result of an assessment for DLA, and last week my Mum as diagnosed with AD.
So there is someoe else who can relate to just how hard it is to be a mutliple carer, and to know the pain of giving up so many of those ideas and ambitions you craved for yourself. My son tells me when I pass on my angel wings are waitng for me, but I often wonder why its been so hard down here. I helped nuse my dad through lung cancer 18 months ago as well and I;m only just getting over losing him.
Yes I know how hard it is to try an access services, and how heartbreakling it is when your children are rejected socially for being different, yes I have cried just because I am so tired I don't think I can load the washing machine one more time or whatever. But for me the worst thing is people who say "oh you doing a great job" or social workers who say "you appeare to be coping so well, we're only really used to dealing with dysfunctional families" and best of all "YOU SHOULD FiND sOME TIME FOR YOURSELF" when they dont offer any support. How many times I've wished I really could give up completely I've kind of wanted to break a leg or something like that so I am forced to rest. I've even considered mass euthanasia and suicide in my darkest hours. But you keep on, you cry, you sigh and you get upa and do it all again tmorrow and one daywe will have time to sit and reflect and do you know what Tamia? You and I will know we made a difference, that we changed and lightended the load for not one but several people, that we have been selfless, and when I;m old and grey I'm gonna hoild my head up high and ask all the other people in my nursing home "What did you do that was REALLY worthwhile" Thats when Ilm gonna feel ten feet tall.
Oh yes dear Tamia I know just how you feel and any time you want to share it with someone who can relate to it 100% just let me know.
In the meantime contact the Princes Carers Trust they hve branches all over the country and have been much more support to me than anywone else.
Take care,

 

[Norman]

Hi Tamia
welcome to TP.
I can promise you that a great many on this site do care.
This isn't just a web site a chat room,it is a big family of people who care,willing to share you burden,and offer comfort and support.
Day and night ,anytime there is someone here for you.
Post whenever you feel the need
Best wishes
Norman

 

[Margarita]

Welcome

I must say that as it took you two hours to post your post you done a great Job at it, as that is just the beginning of trying to find some time out for yourself.

I remember when I first started on the internet I do hope like Helena said that you get in contact with Social services to get a carer in to give you time out.

How are your Children Now ?

 

[jenniferpa]

Hi, Tamia.

Welcome to TP.

Guilt. I think we all have it to some extent. One thing to remember, though: even if you'd realised that your husband had AD the moment it started to develop, there is absolutely nothing that you could have done to change that diagnosis,

Bristolbelle - my son (now 17) had/has RSD, but is now in remission. If you want to PM me feel free.

Jennifer

 

[tamia]

exactly

Dear Tamia, how my heart went our to you. Your expereince is so similr to mine. I have two teenage children with disabilities. My daughter (18 in two weeks) has mild spins bifida, mild hydrocephalus, hearng impariment, Reflex Sympathetic Dystrophy and suspected ASD, my son (16) has Reflex sympathetic dystrohy as well. My husband has been unwell for many yeas with a whole range of conditions and is waitng for the result of an assessment for DLA, and last week my Mum as diagnosed with AD.
So there is someoe else who can relate to just how hard it is to be a mutliple carer, and to know the pain of giving up so many of those ideas and ambitions you craved for yourself. My son tells me when I pass on my angel wings are waitng for me, but I often wonder why its been so hard down here. I helped nuse my dad through lung cancer 18 months ago as well and I;m only just getting over losing him.
Yes I know how hard it is to try an access services, and how heartbreakling it is when your children are rejected socially for being different, yes I have cried just because I am so tired I don't think I can load the washing machine one more time or whatever. But for me the worst thing is people who say "oh you doing a great job" or social workers who say "you appeare to be coping so well, we're only really used to dealing with dysfunctional families" and best of all "YOU SHOULD FiND sOME TIME FOR YOURSELF" when they dont offer any support. How many times I've wished I really could give up completely I've kind of wanted to break a leg or something like that so I am forced to rest. I've even considered mass euthanasia and suicide in my darkest hours. But you keep on, you cry, you sigh and you get upa and do it all again tmorrow and one daywe will have time to sit and reflect and do you know what Tamia? You and I will know we made a difference, that we changed and lightended the load for not one but several people, that we have been selfless, and when I;m old and grey I'm gonna hoild my head up high and ask all the other people in my nursing home "What did you do that was REALLY worthwhile" Thats when Ilm gonna feel ten feet tall.
Oh yes dear Tamia I know just how you feel and any time you want to share it with someone who can relate to it 100% just let me know.
In the meantime contact the Princes Carers Trust they hve branches all over the country and have been much more support to me than anywone else.
Take care,

Thankyou you know exactly where I was coming from, like you I will only be able to access the site a couple of times a weeks circumstances allowing you sound as busy as me and I have contacted social services but although I never stop what are you to say when they ask "what help do you need?" when there is so much which seem like little things constantly. the help they did give over ten years ago when it was just the boys was inconsistant which caused even more problems. now there is 4 of them and a 2 year old living with us with doctors etc I feel I am constantly being judged because my family cannot speak up for themseves in almost all situations so I end up trying to discretely explain changes etc in their medical condition without causing them upset and I am met with complete ignorance that really upsets me to the extent most of the time I walk round with my teeth permently clenched and ready to fly off the handle to outsiders.only carers know how difficult it is to care for adults that are as vunerable as a new born but then demand the same lifestyle as anyone else they are every bitt men in a childs mind.
I would like to hear more about your family situation maybe I would recover the values I was brought up with that there is always someone worse off than yourself. I don't want to be a marta even they die one day but I would like a little retierement first.
thank you very much for understanding
tamia

 

[Tender Face]

Is there anyone out there who is full of remorse for wanting a little time alone?

Hi Tamia and welcome!

For me, no remorse.... I CRAVE time alone and often despair of finding it - when I have nothing like you have to cope with......

I think we have to be creative in engineering that space for ourselves .... take my morning crawl into work towards the city centre .... get giddy if I achieve second gear!!!! I have learnt that instead of getting frustrated with traffic just to enjoy being on my own, tuning the radio into the station I want.... winding the window down and having a ciggie without being nagged at!!!!! Whilst other drivers are clearly frustrated by the situation.... I use it to my advantage.... in fact the rare days the traffic flows I get horribly frustrated!!!!! .....Just an example....

I think you have raised a very important point about 'martyrdom' - from my own point of view, I just don't see that on TP - I sense that people here are very much 'fighters' - for their loved ones and for themselves.... martyrs are skulking off somewhere else... we're all here because we care - and that includes looking after ourselves and each other......

Well done you on your posting!!!! Well done you for creating that time for yourself, most of all!!!!!

Look forward to hearing more from you as and when you can or need to!

Love, Karen (TF), x

 

[Libby]

Hi Tamia (and Bristolbelle)

After reading both your posts, I think I'm begininng to understand what caring for someone truely entails. I don't mean to diminish what anyone else does, because there are a lot of people in different situations on TP, caring for a loved partner or a parent, but to be caring for more than one person and to feel that you are doing it all alone must be so hard to cope with. I'm not surprised you want some time to yourself. You need to, just to recover from coping on a day to day to basis.

Do you not have siblings or friends who would be willing to help out at all. I would like to think that if one of my sisters/brothers/friends were in a similar situation, that I would offer help - just to let them have a bit of time to themselves. Maybe no-one has offered because they think you are coping?!

I do hope you keep posting - take care

Libs

 

[Nebiroth]

Hi Tamia. You said

Now the nightmare is here to stay, in the last few weeks my husband has been diagnosed with AD seemingly having had it for years I have been aware that discretly my husband has been suffering and because of previous commitments I just did not pay attention for this I feel beyond guilty.

For myself I don't think you should torture yourself with these sort of thoughts. It is only natural to feel this way - looking back with hindsight.

For a long time I simply did not notice my Dad's lapses of memory and concentration, or I dismissed them as simply being old age, it was only when things got worse that I started thinking anything was wrong and sought professional help.

If you live with a person you may not notice the slow and subtle changes taking place in them, you become used to them as part of normal life.

Thankfuly I do not think that Dad has been suffering, as he does not realise that there is anything wrong.