Receiving little support

sjcares

Registered User
Oct 1, 2012
48
0
Stafford
Hi, Can anyone give me any advice as to how helpful their ALZ support workers are where they live.

I arranged to see mine to try and coax mom with her help, to attend ALZ Cafes held at my mom's local church and to any other things mom might like to do. I have managed to get mom to attend, but mom expects music every month bless her. Mom wants to keep her condition a secret from her church as her well friends help at the Alz café. So I do feel for her, and hope she will attend again for both our sakes.

The carers association that run the alz café are lovely and supportive at the cafes and hold a monthly meet up just for carers which is good.

I know the ALZ S W's are very busy and have a large area to cover, but the one I have promises to ring then doesn't, Said she wanted to visit mom on her own to get to know her for advice and support but hasn't done so as yet.
Also she told me that she would ring my son who is worried about this nan to maybe send him on a course to understand dementia, but she hasn't done this either. When I ring I'm told she is out of the office and they take my number but she never rings back. Then after 18 months from diagnosis and only having one visit, feel I'm not making a nuisance of myself.

When I arranged a meeting with her, she wanted to see us both at my moms house, then I asked if I could fill her in on how I wasn't coping to well with mom at a later date at my home.

She snapped at me and said, have you just called me round to SOUND OFF as she put it.
I'm all on my own with out family help and disability and didn't expect this reaction for simple advice. I was given a lecture on how she got up at 5am in the morning to see to her mom then went to a full time job and then came home and looked after her kids hubby and home, but had sisters etc to help. She said try and live your own life. I was told that my mom wasn't bad enough if my mom didn't want care in her home etc I just wanted support advise, should I get a job and wanted advice because we haven't been able to get her to visit for 18 months after repeated calls to the office. Have any of you had this problem. these people get paid to do a job like this and I feel if it wasn't for this site and kindness of the people and there good advice, also the carers Ass where I live I would be very depressed. :(
 

Not so Rosy

Registered User
Nov 30, 2013
578
0
Much as I am grateful for this forum, I have had no useful help whatsoever from the actual organisation. :(
 

Not so Rosy

Registered User
Nov 30, 2013
578
0
I assumed it meant Alzheimer's Society Worker, oops sorry if I got it wrong.

It has been like a revolving door here with all the different agencies.
 

jugglingmum

Registered User
Jan 5, 2014
7,085
0
Chester
I phoned local society, before I found TP someone phoned me back, some of her comments were a bit condescending, and I felt made some BIG judgements, and promised to phone back once I had looked at some accommodation, but they never did.

I certainly decided I wouldn't feel comfortable phoning them again.
 

Beate

Registered User
May 21, 2014
12,179
0
London
I think you should go to the top and complain about this woman's attitude. I never had a problem with anyone from the Alzheimer's Society, they are very friendly and have accompanied me to review meetings at the Day Centre etc. so this woman is hopefully only an exception.
 

Onlyme

Registered User
Apr 5, 2010
4,992
0
UK
When I first joined here I posted about a family member and was advised to ring Alzheimer's Society. Yes, I was very tearful when I rang as I had been trying to battle on with very little sleep but I didn't expect "what do you expect me to do about it? Having felt dreadful when I rang I added stupid and a time waster to my list. I never contacted anyone else after that experience.
 

sjcares

Registered User
Oct 1, 2012
48
0
Stafford
What is an "ALZ support worker" new one on me, is this a council/government thing?
K

Hi Kevin.

I was passed on to Alz support worker/ Dementia support worker for a better name, from Alz society from our local memory clinic after mom was diagnosed, for her and me to get support.
Mom told her she could manage as was frightened soon after diagnosis, which is very understandable. I contacted the DS worker after her first visit 2 years ago, she made promises to do this and that for us and nothing happened,after not answering my calls for 18 months.
I was asking for advise, as I'm out of work due to a spinal op and have retrained to do office work, I wanted advise that should I get a job, maybe she could coax mom to go to activities or a day centre so she wouldn't get bored etc The only help I have had was that she gave me a leaflet to attend a monthly meeting for Alz sufferers and carers to attend an evening meet up with music. As I cant drive and it's in a local village with not a very good bus service and mom wont pay for taxis', so this is useless to us. It seems if you get low and need support to cope, you are shouted at. This DSW is paid to visit dementia patients to befriend and give support also to their carers. If I could drive and had the money to learn I'm sure I would be more empathic than this women. give us a job LOL:):):mad:
 

sjcares

Registered User
Oct 1, 2012
48
0
Stafford
I think you should go to the top and complain about this woman's attitude. I never had a problem with anyone from the Alzheimer's Society, they are very friendly and have accompanied me to review meetings at the Day Centre etc. so this woman is hopefully only an exception.

Hi Beate,

Thanks for your advise and to all who have answered me.
The dementia support worker visited mom soon after her diagnosis.
Mom was in denial, and frightened but wanted to remain independent, which is good although she is finding some things more difficult to manage as this cruel disease does to so many.
The DSW discussed about mom making a LPA so it wont be difficult for me later on and said she could choose who she wanted, even a solicitor if she wanted. She didn't explain to mom how it worked just what it was.
Moms reaction was "I'VE MADE A WILL AND WILL FRIGHT THIS ALL THE WAY. I don't want carers and want to stay in my own home." which I agree with, but wanted the support workers support and help for my mom, and for her to have someone to turn to and talk with for support for her and to explain things my mom may not understand.
The DSW said, to my mom." What about if you wake up one morning, and you didn't recognised your home" and you couldnt do this and that etc. I think this has frightened mom and she is very suspicious more so now and thinks I'm after her money, which I know happens to many carers of dementia suffering parents. All because I mentioned talking about LPA with this support worker. I just thought it was a callous way to talk to my mom to frighten her further. This women is suppose to be trained to talk to dementia suffers as well as being a carer in the pass for an dementia suffering family member.
 
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carpe diem

Registered User
Nov 16, 2011
433
0
Bristol
Hi in my opinion for some people the Alz soc can offer help mainly to go to social gatherings like sing for brain. They can also give good advice about getting attendance allowance, poa and other benifits.
Being rude and uncaring is unacceptable though I would say I have more experience about dementia than most of those working in our local office.
My mum was told at diagnosis she would have a home visit from them I am still waiting over 3 years later.
Any organisation which needs to hit targets and make "profits" will seek the easy options and those more vunerable will be fall by the wayside.
I am lucky that my mum's area no longer has an Alz soc and eveything is delt with by a very friendly and capable department in her LA.
My advice would be try and solve one problem at a time and accept that things go slowly but will eventually fall into place. Get your LPA sorted first, deal with other things later. Make your mountain several mole hills.
Print off and fill out your LPA first. Second, persuade your mum to sign. Only then start thinking about your next challange like day care. You are not Bradley Wiggins and can't get to the top of your mountain in a day!
 

jugglingmum

Registered User
Jan 5, 2014
7,085
0
Chester
You are not Bradley Wiggins and can't get to the top of your mountain in a day!

He does 4 mountains in a day, but spends months beforehand training for them. Having cycled up a few of the Alps they are a damned sight easier than dealing with dementia in my experience.

It is actually a relief that others have said they found the same attitude, I thought that maybe I had got the reaction I did because my mum was self funding, my phone manner came across as the professional middle class person that I am (no comment on anyone else on here - just I felt put down because of it), and the fact I wanted to go to work!! and look after my kids at the same time as make sure my mum was in the best place possible (Rant - been bottled up a while).

Irrespective of our life's journey to this point we are all in the same boat when Dementia turns up - not a clue, and wanting to do the best for our loved one. The fact I had little time because I was trying to juggle everything, and go to work, didn't go down well.
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
I am amazed at how things appeared to have changed in the last 6 years, since OH was diagnosed. Then, a lady from AS was there, came to see us shortly afterwards, answered all our questions, pointed to the local Alzheimer's Soc meetings, told us what benefits OH could get and filled in the forms.
Now, it seems, nothing happens. Just this morning I heard of a lady whose husband had been diagnosed some time ago and knew nothing about the disease, the benefits or, seemingly , nothing else. My neighbour was telling her things that she had learnt from me!
I know there are cuts, but isn't this going too far?
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
My jaw has just dropped at the unfeeling reaction of Alz workers in your areas. We have had great support from Alz Scotland and the Link workers attached to our local clinic. I admit that we don't need as much help as some but I feel that there a number of people who are a phone call away from giving advice if I need it.

My one request would be a sort of family tree chart with GLASGOW at the top then all the services, personnel and phone numbers associated listed underneath as I sometimes have trouble figuring out who is who.

If we have other Scottish members apart from Izzy I would be interested to know if they too have a positive spin on our services. I am just stunned that anyone would be unfeeling in dealing with a carer at the end of their tether.
 

sjcares

Registered User
Oct 1, 2012
48
0
Stafford
I think you should go to the top and complain about this woman's attitude. I never had a problem with anyone from the Alzheimer's Society, they are very friendly and have accompanied me to review meetings at the Day Centre etc. so this woman is hopefully only an exception.

Hi Beate,
What is a day centre,? how often do they run? daily, weekly, monthly, what activities do they do? If I got a job could my mom attend one in my town if they have the activities she enjoyed and my mom wants.? i.e. music therapy, attending singers, fun games etc? Do they provide lunch, how much does it cost and would they pick my mom up and bring her home afterwards? I get no answers on this topic from any support workers where I live. It seems I have to take mom in a car. I feel so cut off because I cant drive and getting to out of town places, where they run these clubs. We can only attend a few things that are on a local bus service run from our town. which is once a month for both clubs.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
Hi Beate,
What is a day centre,? how often do they run? daily, weekly, monthly, what activities do they do? If I got a job could my mom attend one in my town if they have the activities she enjoyed and my mom wants.? i.e. music therapy, attending singers, fun games etc? Do they provide lunch, how much does it cost and would they pick my mom up and bring her home afterwards? I get no answers on this topic from any support workers where I live. It seems I have to take mom in a car. I feel so cut off because I cant drive and getting to out of town places, where they run these clubs. We can only attend a few things that are on a local bus service run from our town. which is once a month for both clubs.


Just had a read through the Alz Soc for Stafford and you are right - they are not exactly falling over themselves with offers of groups or help. Why are some areas so much better than others?
 

Beate

Registered User
May 21, 2014
12,179
0
London
Hi Beate,
What is a day centre,? how often do they run? daily, weekly, monthly, what activities do they do? If I got a job could my mom attend one in my town if they have the activities she enjoyed and my mom wants.? i.e. music therapy, attending singers, fun games etc? Do they provide lunch, how much does it cost and would they pick my mom up and bring her home afterwards? I get no answers on this topic from any support workers where I live. It seems I have to take mom in a car. I feel so cut off because I cant drive and getting to out of town places, where they run these clubs. We can only attend a few things that are on a local bus service run from our town. which is once a month for both clubs.
I can only tell you how it is here in Tower Hamlets, London - your situation might be completely different. My OH attends day centre Monday - Friday so 5 days a week, a transport bus fetches him around 9am and they transport people back from 4pm. The only cost we have to pay is £3 daily for lunch which consist really of breakfast in the morning, a hot meal at noon and tea and biscuits in the afternoon. They do all sorts of activities with them, quizzes, bingo, singing and dancing, puzzles etc. My OH absolutely loves it and I couldn't have a job without this vital help! I got it approved through Social Services when I asked them for an emergency assessment as he was putting himself in danger alone at home.
 

sjcares

Registered User
Oct 1, 2012
48
0
Stafford
I am amazed at how things appeared to have changed in the last 6 years, since OH was diagnosed. Then, a lady from AS was there, came to see us shortly afterwards, answered all our questions, pointed to the local Alzheimer's Soc meetings, told us what benefits OH could get and filled in the forms.
Now, it seems, nothing happens. Just this morning I heard of a lady whose husband had been diagnosed some time ago and knew nothing about the disease, the benefits or, seemingly , nothing else. My neighbour was telling her things that she had learnt from me!
I know there are cuts, but isn't this going too far?

Hi Spamar,

I rang the Alz soc soon after my mom was diagnosed and they sent me leaflets about the disease and about care for the future. This was after the first visit from DSW and after the comments made to my mom about LPA. whether my mom has read them is hard to say.
She wont now discuss anything and tells us all, she just wants to live her life and not be reminded. After the first visit from the DSW my mom told my son and her visiting brother that it is me that as told her it will get worse and she wont remember her home etc. Which as caused them to take her side and be unpleasant to me. I have sorted all my moms AA and I have claimed CA all done and helped by my local job centre who have full advice etc to benefits.

The support worker already mentioned about Alz café and where it was held, but I already knew that as my mom attends the church it is held at. So I've done everything to help my mom and just wanted kind support as to what would happen if I got a part time job, and if mom wanted outings could attend without me and get transport paid for by my mom etc.

Also maybe to have a moan about moms mood swings and other difficulties etc, I was told that if my mom still as capacity and doesn't want carers it's pointless getting a care assessment done as she isn't lacking in capacity yet. I shouldn't call her to my home for a moan etc It wasn't just a moan but for advise about activities and what I can do for mom if I got a job.
She also gave ME not introduce them slowly to my mom and explaining to her, she may one day find them helpful, Memory Lost cards! for mom to carry if she became lost etc. My mom would have a fit if I explained them to her and what they were for as she can at the moment get about to shop etc on her own. I think it was to avoid battles so it's all left to me to introduce these things.
She has also implied that mom can count on her if the other people mom see's claiming to be her daughter visit her again, to tell her.!!!! The DSW is making out she will be there for my mom and support her on future visits. Also to support me and my son with advice on understanding dementia, WHAT FUTURE VISITS I ASK MYSELF. In 2 years time??? sorry for the rant I'm just so angry and despondent at the moment. Kind thanks to all who have commented.
 
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Beate

Registered User
May 21, 2014
12,179
0
London
Does Age UK provide a sitting service in your area? They could take your Mum out to all kinds of outings but you might need to get it approved long-term via Social Services so if you haven't got an assessment for your Mum and a carers assessment for yourself, please get one.
 

sjcares

Registered User
Oct 1, 2012
48
0
Stafford
I can only tell you how it is here in Tower Hamlets, London - your situation might be completely different. My OH attends day centre Monday - Friday so 5 days a week, a transport bus fetches him around 9am and they transport people back from 4pm. The only cost we have to pay is £3 daily for lunch which consist really of breakfast in the morning, a hot meal at noon and tea and biscuits in the afternoon. They do all sorts of activities with them, quizzes, bingo, singing and dancing, puzzles etc. My OH absolutely loves it and I couldn't have a job without this vital help! I got it approved through Social Services when I asked them for an emergency assessment as he was putting himself in danger alone at home.

Thanks to all for your kind responses, As I've been advised I maybe cant get a care assessment done as mom may not be bad enough yet, So if I get a job may have to wait until she becomes unsafe to leave. I will certainly look into it though. Hope they have something like that here which I will find out about. Kind regards SJ Cares.
I thought it was just me being a moaning Minnie as I'm very cut off with no job etc. I want to do the best for my mom but I must also work to support myself which is very worrying when there is only you as a carer. I feel guilty enough but I feel more could be done in our area. the groups running once a month isn't enough for dementia suffers they want more than sitting at home in front of the telly. Also carers need to socialize with other carers if alone and not working or we would go mad.
 
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