My mum has dementia

CHEESEGRATER

Registered User
Apr 2, 2015
2
0
My mum has dementia. She is trying desperately to live independently in Thorne in South Yorkshire, (about 75 miles away from where I live), because she still has a few friends in that area. She loses her keys and they are later found in a bag of peas in the freezer. She tells me (Kate) about Kate (me) and Allan (my husband) taking her for a ride out somewhere a few days ago. She sends a card to her new grandson and writes 'from Auntie Kathleen' on it. She telephones three times in the space of three hours on Friday and asks me the exact same questions each time having no recollection of the previous conversations. She asks approximately every 15 minutes what day it is. She can't understand that her gas-fired central heating boiler has absolutely nothing to do with her electric fire. She has difficulty doing simple things like opening jars and bottles etc. because her hands are crippled with arthritis,never mind all the other chores needed around the home. Myself and my sister (who also lives some distance away) and my niece, (who lives in the same town but has a new baby to look after and a full-time very demanding job) are doing the best we can to support her. We approached Doncaster Social Services for support; they asked 'Can she dress herself?' Yes, she can. They asked 'Can she feed herself?' Yes, she can (but doesn't always). Having answered yes to those two questions they were not interested in anything else and are not prepared to offer any support whatsoever. Doncaster Mental Health in the Elderly came to assess mum and deemed her dementia to be 'mild' because she scored a certain number on a set of ridiculous questions. Despite the fact that the result showed a marked deterioration since her last assessment, that dementia is a condition which is only going to get worse, they do not intend to visit mum again. They are too busy, they say, to monitor people like mum who have dementia. We pay for someone to visit mum every day to check that she is ok, to ensure that she takes her meds because without them, she would be (an avoidable admission) in hospital and is classed as a vulnerable adult; I should have said at the start that in addition to dementia mum has epilepsy, has mini-strokes, high blood pressure, high cholesterol, diverticular disease and LGL syndrome (which means her bone-marrow does not produce any white blood cells meaning that she has no natural immune system - she has to have injections on a regular basis to make her bone barrow produce the white blood cells - it's like leukaemia. These injections keep her alive but also give her unpleasant 'flu'-like symptoms for a few days). She is no longer physically able to walk much further than the local newsagent's across the road and most days sees nobody other than the home help. I'd really like it if this comment (and subsequent comments re mum) could somehow end up coming to the attention of someone who might be in a position to do something about the dreadful situation in which my mum and many other elderly people find themselves; not ready to go into a care home but needing much more support than is on offer in order to be able to live independently.
 

tre

Registered User
Sep 23, 2008
1,352
0
Herts
I agree with you,this is a terrible situation. I do not think that Doncaster is any worse than anywhere else. It is all down to budget cuts. The social care budget has been cut to the bone and this results in help only being offered to those who are judged to be in substantial need or crisis and indeed in many areas help is restricted to those in crisis.
I think this probably does not save money in the long run as what is not spent on social care probably results in more costs to the hospitals but all of this is not looked at in a joined up way despite the fact that health and social care are now being brought back together.
Basically, the hard truth is that unless your family or your mum make a private arrangement to bring in more outside help then the state will not offer this until she is much worse.
Sorry to be sending such a depressing post but I cared for my mum ( though she did not live with me) with vascular dementia until she died in 2011 and I am now caring for my husband who has one of the early onset types of AD and it is my experience.
Tre
 

Pottingshed50

Registered User
Apr 8, 2012
514
0
Cheesegrater - I am so sorry for you and the worry you feel about your Mum. Unfortunately all you describe is exactly how the disease seems to manifest itself. Mum did lots of crazy things prior to going into a Residential Care Home but she is self funding and so that could have made a difference. Even that was not a piece of cake and for about 3 years the family made a nuisance of themselves to get attention as to Mum's needs.

Mum is obviously 'under the doctor' as poor lady has had a bit of a time of it by what you say. Just because SS say they cannot monitor Mum and do not intend to visit again, I would keep on at them and dont give up.

Have you contacted Age UK , I have seen on here many positive outcomes when they become involved, even if they only give advice. It may be worth giving it a go.

I am sorry I cannot be more help.
 
Last edited:

Sianey

Registered User
Mar 23, 2015
103
0
Yorkshire
Your mum

Have you got a good social worker involved, I think you have to really push though? You should be assigned one. I have with mam and I couldnt manage without her. They are there to help especially providing enough carers to help her.

You could be talking about my mam everything is the same. Mam hides things or according to her they are pinched I find things in ridiculous places, the t v remote in a sock in the wash basket.

It is very stressful especially for you living away.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
There are some basic things that SS should be involved in eg helping with Attendance Allowance which is not means tested, removal of council tax once AA is given, helping to put her in touch with care agencies, social groups which she might visit for company etc. I agree that Age UK may step in to fill those gaps if SS are not up to it.
 

Sianey

Registered User
Mar 23, 2015
103
0
Yorkshire
Have you seen the Welfare Rights Officer? It sounds like you should be more entitled to more help to me.
 

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