do you recognise this scenario?

[Jude]

Dear Lulu,

Get straight back on to the SW tomorrow morning. Sounds like they have a trainee fielding calls in your area.

Jude

 

[daughter]

Quite right Jude! My Dad finally got a SW assigned to him but nothing much was happening and then we found out that said SW had left. So we had to start all over again with a new one. Luckily she was on the ball and got things moving. You have to keep pushing until someone who knows what they're doing is ready to listen and take action. Keep asking the questions Lulu!

 

[Lulu]

I will phone in the morning. It feels like going back to square one!

Yes, prhaps the SW who came to see us has left, but why couldn't they tell me if this was the case?

Thanks everyone. By the way, Mum uncomplaining today. Asked if she was happy, content, liked her new home ...yes to all these. What a contrast!

 

[Jude]

Hi Lulu,

As much as it feels like a return to base, all of your calls will have been recorded beforehand and on file. Very probably that the SW was out as stated. Just keep on insisting to speak to somebody who knows what they are talking about.

Good to hear that you've had a relatively hassle-free day as well.

Cheers,

Jude

 

[Sheila]

Dear Lulu, yes Jude is right, they have to log your calls, so it will all be on record, hope you have more success in the morning, love She. XX

 

[Lulu]

I don't want to admit to you this evening that I didn't call the SS again - after all, they are in the process of getting someone to see Mum and I ....I hate to be a nuisance to anybody, and I feel in such a mess at the moment, it's all getting muddled. And then, from the previous experience with the SW, we will all sit together in Mum's sitting room. They will ask her, via me, how things are. She will say fine, they will look to me for verification. I will have to tell the truth. Mum will look at me as if it's all a pack of lies ......

I know we are not 'urgent' in the grand scheme of things -it seems only to be my word on what's happening. I don't want it to be on my word only -I need someone to back me up with their tests, to discover for themselves.

I did however leave a message with the DN who came to see us the other day (she was the one who liaises with SW's etc, and she did the initial referral. She told me that SS were snowed under at present, but that I was to make my case as I was to thnk about my own life, as well as Mum's. She will probably get bacj to me tomorrow -she is only part time I think), as she has always been reliable. But she won't be able to do anything further.

I love my mum,as I did my dad, and for instance this evening, she has turned up for her evening meal, looking exceedlingly well, talking a lot of sense in general terms. All the correct responses, in all the right places .......but she is starting to direct all her questions to my husband -bypassing me, the person who does everything. I have a lot on (who hasn't!), She eats her meal at speed, leaving the rest of us to finish in silence as converstaion dries up ....I have 2 0f my 3 children home from Uni , the 3red in her first job ...all wanting attention, all telling me that Grandma is no longer the same,and all I seem to concentrate on is my Mum. Which I want to do -I want her to have the very best, but my children's lives are diaspappearing in fron o fmy very eyes. They love her too, but can see the difficulties, the changes in her ......

Perhaps I am the only one who can detct Mum's disquiet ...but it's there. Making me feel so guilty all the time for trying to carry on, even tho I sense she is aware that I have so much on but unable to do anything about it. I know her personality, all her nuances, so I am feeling it more. Have just had an argument with my husband ... This is their life too. I can't push the SS as I'm not on firm enough ground. They seem surprised to learn it's difficult -that I am unique, then I think I must be weak. But I'm not. I can cope with quite a lot ............but this is going from bad to worsE. I need to believe they are listening to me. Perhaps they are, in theory .....This is a nightmare actually ..... I admire you all.

Sorry, very confusesd message, but had to get it all out.

 

[Nutty Nan]

Lulu,
your message doesn't sound confused to me at all - quite the reverse: you are feeling guilty for asking for help which is not forthcoming > SS are so snowed under that they are only dealing with emergencies > Your stress levels are rising by the day because everyone wants/needs a piece of you and you feel pulled in all directions because you care for them all equally, but it is physically impossible to keep up this multi-tasking which is so in vogue > you cannot expect your Mum to understand and co-operate so you try and concentrate on her (quite willingly), while the rest of the family accept their places "in the queue" >>>> at this rate you will be getting the attention of SS when you finally crack up and they deal with you as an emergency.
Do I sound cynical? Well, I wonder why ......
My situation is different to yours, but only slightly. I have been getting to the point of feeling that I should be giving up work in order to concentrate on the 'caring' bit for almost a year. I have made many phone calls, written many letters, tried many avenues to get some help in order to delay a decision which I don't really want to make. At the beginning of March, the response from SS was "Give up work - why? You wouldn't say that if you were a man. Nobody expects you to give up work. There is all sorts of help we can provide ..... " etc. etc. - would it surprise you that 18 weeks later, I am still waiting? The stress of compromising both my work and my role as carer is considerable, and I wish they had added at the time "but it may take forever!"
I have been stepping up the phone calls, and I will try and ask very nicely whether it might not be a better investment to find a little bit of help soon rather than wait until a great deal more help is needed.
Fingers crossed, and let's both resolve to shout a bit louder.
Best wishes!

 

[Norman]

Hi nutty Nan
I have been through all the phone call,pleading ,begging and then the promised "someone will ring you" not happening time and time again.
Moved from one office to another without any detail of where we are now contacting, or why we were moved at all.
Told "we are thin on the ground you know".
So now enough is enough I have made a formal stage 2 complaint,will keep you posted.
Norman

 

[Sheila]

Hi Lulu, these early stages of the disease are a killer to the lives of those around the sufferer. You try so hard to be "normal", to make their lives "normal", but in reality you get to the stage where you are hanging on by your fingernails and every one seems to be agitated by the knock on effect of keeping things "normal". Least, thats how we were, it wasn't till Mum had gone down a few more notches bless her, that narmality for her was finally out the window and the rest of us got into some sort of patern of coping, not just with Mum, but with life as it now had become. I know what you mean about your kids lives passing you by and you not being able to give them the time you want, but we are all of us only human. Try not to be so hard on yourself. Talk to your children, share your fears with them, tell them how much you love and admire them. Even though your lives can never go back to the way they were before AD came to stay, you can and must have a life you all can enjoy together. I am sure that if your Mum could say so, she would want this for you too. It's not her but the disease that is messing things up, so don't let it, fight it, say enough, then make time for the things that really matter. As long as your Mum is safe and well cared for, you are entitled to take time out for yourself and your family, we all are. Lotsaluv, She. XX

 

[thompsonsom]

Hi Lulu

Can I just say I sympathise totally with you and know exactly what you are going through, 18 months ago we were going through the same things as you with my mum/in/law she wasnt coping by herself and as we lived just round the corner she was on the phone constantly and we were flitting from our house to hers on top of trying to work full time. She refused to go into a nursing home when suggested by other members of the family and we took the decision to mover her in with us. We thought she would settle better as she had once owned our house and spent a lot of time with us so it was all familier to her but as the illness progressed and she forgot who my son was and vented her anger at him. It became to difficult to work full time and deal with the problems at home so another decision was made for me to stop working and look after her full time. We were lucky as within a month we managed to get her into day care 3x a week. It has been a difficult 17 months with lots of bridges to cross, there has been good days and bad days dealing with the illness and whilst it was better than running round to her house it has taken its toll on the family, my husband and I have had many arguements caused by the stresses we have faced and it has put cracks in our 21 year marriage, we have no life outside of carers and cannot visit friends and stay away from home as mum/in/law gets upset and then we end up arguing. My son as been made to feel like a thief in his own home and the once loving grandma whom he spend many hours playing games and cards with has now become the wicked witch and I hate the fact that his last memories of her are ones of her scowling at him and making comments whenever he walks in the room. My daughter is at uni away from home and whilst she understands the problems of looking after grandma there has been times when we have tried to have conversations on the phone and i have got sidetracked doing something with m/in/law and she has said something about not having time for her.
It has now got to the stage where my mum in law has periods of not liking me and at times has become quite violent towards me, truth in the fact that some alzheimers patients seem to single out 1 person and vent all their anger and frustration at them, in the beginning it was my son, now its me and there are so many days of late that i think why i am bothering if she hates me so much, i know in my heart she doesnt its the illness but it doesnt make it any easier to deal with when youre getting punched and kicked by a 79 year old and you have to maintain restrain. We have been lucky in finding a nice care home and put her name down but in reality we should have done it months ago as there is a long waiting list and now we really feel the time has come when in order to keep our marriage we need a nursing home place. If I can offer one piece of advise it would be to look at places now and put your mums name down if there is a waiting list, you will know the good homes as they always have queues of people waiting, just because mums name is on the list doesnt mean you have to accept a place as soon as one comes up if the time is not right but at least you are in the system for when the time comes. we do have regrets at the decision we made as we never really knew what we were letting ourselves in for and whilst we do pat ourselves on the back sometimes for giving m/in/law 17 months more of family life we wonder sometimes if it has been worth all the stress and toll on our family when at the end of the day she has no recollection of what we have done and whilst it would have been hard to have put her in a nursing home in the beginning she would, due to the nature of the illness have settled eventually and we could have all had quality visiting time without the stresses of dealing with the illness on a day to day basis. If given the choice would i do it all again? no never! but at the end of the day it is each individual persons choice as to which road they go down, if someone I knew was faced with the dilemma we were faced with I would point out all the pitfalls we have faced and tell them to think very carefully about how much of their life they want to give up to this illness, not the person with the illness because in reality you are not dealing with them, they are just a body taken over by this dreadful disease.
It doesnt matter what decisions you make you will always carry this great guilt feeling around with you and i am sure i must have lost a couple of inches in height with the guilt i feel at times.
Best wishes to you all

Janice

 

[Jude]

Dear Lulu,

I see the AD Guilt Monster has arrived at your home, bags and all...!

This is an insidious little demon that variously barges through the front door, creeps in through open windows or limbo dances under the back door - and then wreaks total havoc. It usually brings a load of luggage with it, with bags variously marked as stress; anxiety; inertia; loss of sleep; indecision; sadness; isolation and fear, to name a few. It's a nasty house guest who has no intention of leaving unless we take stringent steps to get it evicted asap...!

GM's can be defeated and booted into touch, but you do have to check its baggage beforehand. That means identifying the problems and opening the boxes it brings with it. GM's hate clarity of thought; ongoing plans; frank discussions and personal strength.

It takes a bit of beating but once you've sussed its devious habits, then you can start an eradication programme. Rather like mental Domestos, I guess.

Jude

 

[Geraldine]

Dear Lulu

I really feel for you. In my dealings with the SS I soon realised that if they think you are coping and then if YOU tell them that you are coping you will not see them for dust. Because they only seem able to work in firefighting mode they seem unable to anticipate a situation and put measures in place to stop in happening.

I found that the only way to get help is to tell them you cannot cope anymore or that you will not cope anymore. It is very hard especially when it is our Mums we are talking about. I left it too late and nearly had a breakdown when the crisis came, Mum went into hospital then into a home and never came home again. I'm sure others on the forum have probably had much the same thing happen.

Norman will agree that the only people who get any help are those who shout longest, loudest and to the top of the ladder!

Please make those 'phone calls before your own health starts to suffer - your priority has to be yourself and your husband and your children. I have just read Janices heart breaking message, it is all so true and exactly how it happenned with Mum. But I only let the evil illness have my Mum try to kick me me once before I made the 999 call, I knew that I could not let her condition poisen our relationship any longer.

best wishes

Geraldine

 

[Lulu]

That is so good Jude! And thanks everyone , yet again.

OK. First thing, up to Mum's. She seemed OK, no complaints ...all apparently very normal. Came home, and after a few moments of mental turmoil, (I was wrong for even considering Day Centres and all the rest of it, how could I be doing this to her), rang SS and was put through to who I thought was our social worker. It took her a few moments, but she seemed to recall who we were from our one meeting -and it seems she is no longer our social worker, that we would be allocated someone perhaps next week. Well that was all I needed -an explanation.

So, when I do see our new SW, my plan is to ask about day care, and to ask about respite -where to start looking. I just need my search narrowing down a little. The aim is to get on a waiting list for the future should it be necessary.

Day Care I have started to make my own enquiries. The one which sounds really good, and just right for mum's needs, is out of bounds I think. Even though Mum's surgery is in the right catchment, she actually needs to live there too and we happen to be just over the border. I want to speak to the SW about that, too.

All the frustration stems from these people making comforting noises -yes, you need to have these things in place, yes you need to make time for yourself, there is a lot of support out there, get back to us if necessary -but I am not seeing that.
I can't see much support at all at the moment. Except here!

Thanks for being so frank and open to everone who has replied.

 

[Sheila]

Jude! That GM thing is brilliant, it should go as a sticky!! Also into the magazine etc. I have printed it out and stuck it on the fridge door, love She. XX

 

[daughter]

it seems she is no longer our social worker, that we would be allocated someone perhaps next week. Well that was all I needed -an explanation

I don't want to say 'been there, done that'

nothing much was happening and then we found out that said SW had left.

but I have 'been there done that'!

we would be allocated someone perhaps next week

I hope you will be phoning again next week to make sure that's a definite! (That's just me nagging but I know how easy it is to not want to make a fuss thinking they'll get around to me eventually ) You've come such a long way in a relatively short time Lulu, keep up the good work!
All the best,

 

[Splat88]

I'm new to this forum, but I can really sympathise with Janice. We sold my mother in laws house, and our house 2 years ago because we spent more time running to Mary's house when she got alarmed about something. My husband has one brother who thought Mary was putting it on, and has stopped ringing her once a week since we moved in together. His only contact now is birthday and Christmas cards, and if we don't remind Mary she has two sons, she never mentions him. It's as if he doesn't need to worry now we have responsibilty for her. So, 2 years of coping with the mental side of it, fortunately there are no physical problems yet.

We have three sons, from 19 to 24 years of age, and even though they all live here, she still doesn't know who they are, we can't leave the house easily as she's inclined to let anyone in because they may be friends!!


Apart from the visits to the clinic, we get no help at all, and I am assuming that it's because she lives with us and we make sure she eats, takes her medication etc. SHe takes 10mg of Aricept, and anti depressants as well blood pressure drugs. Washing is another matter, she's intenslye private and will not allow any help. I wish she would attend a day care centre, but she is quite anti social and alienated all her neighbours before she moved in. She doesn't see herself as ill, it's all down to old age, and in fact the only medical diagnosis we have is of short term memory loss.

So, we plod along having the same conversation every few minutes, not that Mary cares, she's only lived here 2 weeks!!!

 

[Rosalind]

It strikes me the powers that be do not volunteer information about help that is available to carers. It was only when I threw some rather dramatic wobblers that things suddenly kicked in, and now my husband gets visits from AS befrienders, agency visits when I am away, and attendance allowance. Before that we got absolutely nothing. I have now established that the Community Psychiatric Nurse is my first call when seeking information, and help.

It is in the state's interest that people like you continue to care for your mother in law, rather than having to take her into a home, so you need to make them think you are getting close to breaking point. Next time you see the clinic insist they tell you where you should apply for support with home care and everything else. Do this with a wild look in your eye, your hair in a mess, a railway timetable to far away places poking out of your pocket, etc - don't do the British 'everything is fine' bit.

My local carers group were helpful, and pointed out that I, like you no doubt, have no training whatsover in this type of work, whereas the professionals have spent years, so there is some obligation upon them to help you.

Good luck!

 

[Lulu]

where to start

Rosalind, Jude, Splat88, Hazel, Sheila, Geraldine. Norman, Janice, Nutty Nan, EVERYBODY.
thankyou. Such heart rending tales. I wish I could help.
Rosalind, I don't think I'd have to work very hard at gettting myself looking the part! Am more than half way there ...and going greyer by the day. I enquired about the carers support group back in January but was told it had ended til the spring, and I had meant to ask again because they haven't sent me the info as arranged -but that was as much my fault -I had just forgotten to chase it up. Have e mailed them again, but no response. Shall have to phone ...
Splat88, my brother thought Mum was putting it on, which threw my resolve for a time ..but now know there is no doubt, and he is coming round to things. Like you, Mum never mentions the rest of the family -out of sight =out of mind. I do try to keep everyone informed, up to date, but it's fast becoming an impossible task. Too many other priorities.
Hazel, I can hear what you're saying and I shall phone again next week if nothing happens. It took me a while to pluck up the courage ...but it's OK now! You can chase me up !!!
So we wait ... I am so grateful.

 

[Norman]

original posting by Norman
Hi nutty Nan
I have been through all the phone call,pleading ,begging and then the promised "someone will ring you" not happening time and time again.
Moved from one office to another without any detail of where we are now contacting, or why we were moved at all.
Told "we are thin on the ground you know".
So now enough is enough I have made a formal stage 2 complaint,will keep you posted.
Norman




Following my formal complaint, I received an acknowledgement dated 13.JULY 2005
6 days later (today) my direct payments were made from the city treasurer's department!!!
What a coincidence,if they had been paid 11 days earlier I would have had no complaint about non payments.
Norman

 

[Sheila]

Hi Norm, glad thats sorted for you, love She. XX