Some advice please about talking to social services

[Boldredrosie]

Anongirl's post Fed up tonight has got me thinking about how many of us in this forum must be the real squeezed middle -- ailing, frail parents on one side and children on the other. In my case my 14 year old son and I live with my mother who is 82 frail physically and now, since my father's death this spring, really succumbing to whichever form of dementia it is that's robbing her of her faculties.

This New Year I'm taking Ma to the memory clinic and social services should be there. I have put in a formal complaint against their total lack of help and given they've been shamed into actually meeting me I would welcome any advice how I get them to offer concrete and practical support that would make our lives easier. I would very much like to ensure some action follows this meeting rather than it just be an exercise in them murmuring how terrible things are for me.

So what should I say? That I am concerned that when my son and I are out at school and work that she may hurt herself, that I know she doesn't feed herself and it's all a bit hit and miss with medication? That there have been instances of her letting quite unknown people into the house?

Or do I say that I can no longer cope, that I have no siblings or family to come and lend a hand and that if I have a physical or mental collapse the system will end up taking care of all three of us? Or that one day I'll just leave home and disappear?

Or do I say I can't cope with both of them, so take your pick -- teenager or old woman, don't mind which one but you need to give me help with one of them before I go bonkers?

Which approach is most likely to galvanise some action? I'm not expecting miracles but even if they could just tell me how do I get her to eat something other than toast at lunch time and how to ensure she knows what day it is so she doesn't feel obliged to phone me at work to check that would be something.

Frankly any suggestions welcomed

 

[supporter1]

Think i would go with 1 & 2 , itemise the difficulties and then say not coping the way things are .

SS deal with detail , they have to evidence everything which is why you need to itemise everything and then emhasize that your stressed and how it is affecting you and your family .

You are entitled to a carers assessment if it has not been offered it should have been !

Good luck and hope you get the help that you need .

 

[kkh42]

I think its interesting that although we, legally, only have an obligation to CARE for our children, so many people are put in a place where they feel obligated to care for parents/spouses, etc. It is my feeling that for those people that step and assume some caring role that social services take advantage of that fact and help is not forthcoming as compared to someone who had no one to look after them. This is such a shame as most (if not all) of us on here are happy/willing/wanting to provide some care to our loved ones, withing our abilities/capacity and other life constraints. If we all just walked away - what would social services do then? The complete lack of acknowledgement is amazing. They should be beding over backward to provide support, so that those of us who have assumed a caring role can continue to care, saving them an untold amount of money and man hours. Instead, once you assume any sort of caring role, you are left to fend on your own.

My advice - set it out clearly to social services what you ARE an ARE NOT able to do. Be realistic, take into account your child's needs and your own. Then make it very clear WHERE the gaps are and that if they DO NOT take responsibility for these gaps or at least assit you in finding solutions for them, they can consider themselves accountable for anything that happens to your parent/spouse/brother/sister etc.

Be willing to work with them, understand their time/resource constraints, but stick to your original plan. Dont be taken advantage of. I know this can be easy to say/type and much harder to put into action, and you will find it exhausting.

I wish you the best of luck, please let us know how you get on or if there is any practical advice needed/offered.

 

[kkh42]

Some practical tips:

1) Food related- my Mom will not get ANYTHING for herself to eat. When asked -she denies being hungry, but when I give her a meal, she eats EVERYTHING. So - we have adopted the "Bird Feeder" approach. Out of sight is out of mind for my mum - so when I go out or am at work I leavea selection of food out in view, anything that doesnt need to be cooked/heated. Sandwiches, nuts, fruit, and some sweets. I also leave a large glass of water or squash out. She will walk by the kitchen and pick something up and kind of grazes throughout the day. Sometimes I come home and everything is eaten, sometimes very little has been eaten. But overall, she is not losing weight, so I assume her calorie intake is sufficient. Plus I get the odd, full evening meal in there when I am home to cook for her.

2) Day/Time of Day
- we use a whiteboard at home. Helpful if you live with the person, not as easy if you are not there every day. I put the date, day of the week and the days activitives, including a short list of "chores" for Mom to do (she likes to feel helpful and gets frustrated by not contributing). I also put my estimated time home at the bottom.
- clocks with LARGE digital numbers, hung in obvious places. You can source these online.
- tags on drawers,doors,etc. Almost everything in our house is labelled.
- "projects" left out for her to workon. e.g. knitting needles and a ball of thread;
a box of old photos to "sort", etc.All help pass the time, ease the anxiety and make the person feel productive.

Hope some of this is helpful

 

[cragmaid]

Emphasize 1 & 2 and chuck in a bit of 3 for good measure. The more you say you can manage to do such and such, they more you are left to do it. Remember the simple thought.......What happens to your child if you break your leg helping Mum?
Easier to say than to do...God knows, I know.......but prioritize for your sake, your son's AND your Mum too.

 

[BrightSide]

Hi. My father was only given help after he was diagnosed in hospital with vascular dementia, and later with Alzheimer's. My 85 year old mother struggled for at least three years with his decline. I helped as much as I could. His GP was useless. One day he went a 'bit funny' and we called an ambulance . He probably didn't need an ambulance, but at least he was admitted and 'noticed' ! There he had a scan and they found a recent bleed. Social services were involved because of his age and my mothers age. He was discharged with a care plan for personal care once a day. This has since been increased to twice per day. Up until this point my mum and I were struggling to give him the care he needed. My mum said she couldnt cope but nothing was done. He goes in for respite which I think you would find so helpful, but I think your mum needs to qualify for personal care and and attendance allowance in order for you to get her in. Two years on and my dad needs permanent nursing home care as my mother can simply no longer look after him, she has her own health issues, but it is not happening quickly, and it is a nightmare finding a place and we are on a waiting list. In the meantime, we are waiting for day care assistance and voluntary sitter service...anything to get him out of the house and stimulate him, or let mum go out. she is with him twenty four seven and only goes to shops if i can come over to sit. Our new GP basically tapped his nose and suggested that if mum could not cope with him, that we call an ambulance again and then tell the hospital we cannot take him home once he is admitted! We will not do this, and i am not suggesting you do this, but it shows that even the GP knows how hard it is to get help.

In my experience, you need to get your mum to a GP for a diagnosis of dementia. Then you need to tell social services that your mother has dementia. You need to then ask how they intend to help you, as a carer, and your mother as a client. Then you need to find out who her care co ordinator or care manager is, and phone them daily and get her name in their head until they get so fed up of you they give you the help you need! It is a very very steep learning curve which we are still climbing, and I wish you the best of luck.

 

[Boldredrosie]

Thank you for the posts of support and advice. KKH42 we do have a notice board and I'll try and make more use of that.

Thanks Brightside but mum does have a diagnosis of dementia and has had for many years. She was an emergency referal to social services who did nothing, after many calls on my part came to see her five months after the emergency referal and when mum declined whatever it was that was offered (I wasn't there when they met with her) they decided to close her case. That's why I made a formal complaint about SS and why we have the meeting in the New Year. And it's for that meeting I need some advice on how to take our situation seriously.

It's like KKH42 says, as soon as they see there is somebody around any help or advice disappears. And the fact we all live together is a perfect excuse for them to do nothing. And so far it hasn't mattered to them the trauma it's causing my son or me.

 

[Shash7677]

Hi there,

I totally agree with everyone else 1 & 2 definitely and a bit of 3 just to emphasise your point. You have 2 people in your house who are dependant upon you, who donyou depend upon? This is when SS should be doing their job. Just tell them, you realise you need to be a brick for everyone else but even bricks crumble so what happens then???? Who cares for mum and son when you are potentially end up ill through all the stress that you have at the minute?

When mum was discharged from her psychiatric assessment unit she was placed in a Residential Care Home that allegedly specialised in dementia. We had a meeting with mums consultant psychiatrist, social worker, OT and psychiatric nurse at which time I asked if my could go into a home I knew well. No, she didnt need nursing care so no, that home isn't an option! 5 weeks after her discharge into the residential home after much hooraying by myself she was moved to a NH as 'evidently the residential home cannot cope with mums level of AD'. How I wanted to sit there and say 'didn't need nursing care eh' but I didn't, as everyone in that meeting room 2nd time round knew that they had been wrong, very wrong infact in mums case. I'm fairly sure when you have your meeting the SW there will also realise they have been in the wrong in not helping but if I were you I'd bloody well tell them so as well!

Take care and update us with how you get on.

Sharob