1. fiat

    fiat New member

    May 21, 2019
    well here i go mum was diagnosed with dementia 2 yrs ago after being hospitalised for colitis she had a very bad case of delirium and her whole personality changed she was aggressive shouting and refused treatment for several days .once all her medical needs were met she was discharged with very little support dad was alive then and had medical problems himself mum was his main carer so myself and sister took on his care as well unfortunately for us they didn't want our help and each time we introduced any thing it was turned down .sadly dad died suddenly just collapsed in front of mum and me and died . i don't think mum even cried then just sat there .since then we been looking after her we have carers in place for the morning to give her medication which is now locked up as she was forgetting she'd already taking her tablets and was taking more but she wont let them do any thing else she wont even shower .we have had social services in and they ask her if she needs help she says no so they leave ( they cant make her until she agrees she needs help) we have now roped our brother in to help one of us call there every evening after we finish work (yes we all have full time jobs) to cook her an evening meal tidy up an try to motivate her failing miserably to motivate we have tried jigsaw colouring sewing any thing to keep her occupied till we get there mum doesn't think shes ill we do our best. whats hard is the lack of support we as carer get .we tried to get mum into a day centre but there isn't any in our area only one that we have to take and stay with her not viable we work we have had numerous itu that in its self can be problematic and changes her behaviour yet again our gp not very sympathetic and trying to get a dip test done with them unless you go first thing in the morning which we cant cause again we are in work very difficult. i know we are lucky we have each other to help but after 2 yrs we are struggling and there is nothing and no one who will offer us anything unless mum agrees i just don't know what to do i know its not mum being difficult on purpose its this horrible disease but how can we convince her we need help to help her we want to keep her at home for as long as possible but its getting more and more difficult
  2. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    Hi welcome to the forum. You don't say whether your mum is self funding but if she is you could get carers in to sort out the evening meal. My mother-in-law was like this ,always thought she was fine. To be honest, you need to step back ,because you and your family will run yourselves into the ground otherwise. You say day centres are out,what about a sitting service or befriending service. I'm afraid that the default answer with person with dementia is usually no and of course they don't think they are ill. I'm sure others will be along soon with better advice
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello @fiat. Welcome to the forum.

    IT sounds as if Social Services believe your mother still has the mental capacity to make her own decisions. Unless you can convince them she is a vulnerable adult and at risk I`m afraid there is little you can do to expect her to do anything she doesn`t want to.

    It`s not easy to motivate people with dementia to occupy themselves while they are alone. It`s often not easy to motivate them when they have carers as support either.

    I also think your mother is more likely to accept help if you are not so readily available. It sounds cruel I know.

    If your mother seems to be OK while you and your brother are at work then perhaps she is not yet ready for outside care to be brought in. I only managed to get day care for my mother when she was phoning me at work for attention because she had lost all concept of time, didn`t realise it was inappropriate to phone me at work. She also wandered and got lost several times while she was by herself.

    At this time we were checking on her morning and evening before and after work, shopping for her, doing her washing and taking her evening meals.
    She also took up most of our time at the weekends.
  4. LHS

    LHS Registered User

    Oct 5, 2018
    Your story is similar to my mum. She still lives alone and me and one of her friends try our best. I work full time, live 45 mins drive away. Without the frequent presence of her friend I dont think mum would have got this far and if anything it has masked (to others and to herself) how bad my mum has actually got.

    He however is now starting to decrease his involvement after some sort of argument at the weekend (which I believe was prompted by my mum throwing away a sandwich which he had bought for her and left in the fridge for lunch, then told him that she'd eaten it, then complained that she was hungry and then he found it in the bin...). This is the sort of scenario that both of us frequently encounter but I think he has reached a point of losing patience now. It is very tiring having to emotionally support a loved one whose whole personality has been taken over by this wretched disease and also practically draining spending time driving over etc and missing time with your own family as a result.

    It is not just a case of mum being defiant about being ill or steadfastly refusing external support, it is also that she directly lies to us and sabotages efforts we put in place such as getting food for her or planning to take her out on a nice day to get her out of her endless sorting through stuff in the house and then she accuses us of managing her life and that she has no free time!

    I said to her friend at the weekend that maybe it would be good if a couple of days a week neither of us went to see mum. Guess what, on Monday I got a distressed phone call from mum at midday at work saying that she was starving and couldnt find her front door key or purse. I ordered a delivery pizza for her which she actually accepted (amazing what raw hunger can do) and when i rang her about an hour later she was a changed person and had actually forgotten that she had rung me in distress. As others say on this forum i believe that when someone is so defiant it has to take some sort of emergency to be able to make progress in providing further external support. My next step is going to be to hopefully order a meals on wheels delivery when i can be there to eat it with her and smooth over the delivery process.

    I have previously tried to get some gentle involvement from the council but they have said that they cant if she refuses. She gives a wonderful performance if anyone asks her questions saying that she socialises with neighbours (in fact she goes round in tears), she eats well and cooks her own meals still (she has had several food related ill health episodes from eating uncooked or off food, can no longer operate the cooker or the microwave, throws away perfectly good food) etc.
  5. marionq

    marionq Registered User

    Apr 24, 2013
    Food can become a battleground with elderly people. My SIL is handicapped although still very active, eccentric but not with dementia as yet. Her fridge and freezer as well as her food cupboards are as barren as a famine hit country. For years I used to fill them up with food which she would use but never replace. She will not cook as she says it makes her kitchen smell! She does like to eat though and because my life is taken up nowadays with looking after my husband who is her brother I have had to step right back.

    She now regularly, possibly daily, eats in Macdonalds even though some years ago when she was doing this she had chronic constipation and had to have an enema twice to clear her bowel. I have reminded her of this but to no avail. This week I checked her kitchen and she had half a packet of peas in the freezer and milk and butter in the fridge. That was it. No bread. Eggs, veg or fruit.

    I give up. She has money and is active so I have to allow her to make bad choices. Frustrating.
  6. Palerider

    Palerider Registered User

    Aug 9, 2015
    North West
    I'm in a similar situation, despite a recent assessment by social services and the psychiatric team (memory clinic), they felt mum wasn't in need of urgent placement, even after she had walked to the GP's 6 miles away (as she didn't feel well). I got a phone call while at work (50 miles away) and had to get the police to search for her as the GP receptionist let her walk out. This is because when she was assessed she put up an amazingly good front, plus the psychiatrist didn't push her assessment in my opinion.

    Mum did agree to day care when social services came to see her, so I am still waiting for a package of care to be put in place, twice a day (which is proving difficult as we live in rural Cheshire) so that they put her in a taxi to day care when I am working as well as ensuring she takes her meds and eats a hot evening meal, in the meantime its down to me to carry on as best I can.

    Its a horrible place to be, and your anxieties must be unbearable at the moment
  7. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    Hi Fiat
    Your mum sounds very like mine. She was diagnosed 3 years ago and looked after by dad. Sadly he died in March 2017, and we had an assessment so mum goes to a day centre 4days a week and has carers 4 evenings, with family doing washing, shopping and providing meals at the weekend. For 2 years mum refused help from the carers saying she could do things herself ( in reality she could do very little). Eventually, after good advice from TP we told the carers they must heat up an evening meal for mum , then it was her choice if mum ate it or not. We did mention that we didn't want to get a safeguarding situation where mum was being starved, and since the meeting the carers have been microwaving meals ..... and mum is actually eating them. This has really helped ease the burden on family. The only thing now is that mum never changes her clothes or showers, and at the moment we feel that having carers in the morning just wouldn't work , as mum gets up at different times so could be up and dressed before they arrived, Will have to see how things progress, but have started looking at care homes for the Autumn.
  8. LHS

    LHS Registered User

    Oct 5, 2018
    I have just been taking first steps towards getting care visits for my mum to include the prep of a hot meal and was told a lunchtime visit is best to allow for variable getting up/bed times.

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