Mums so aware of her dementia

Discussion in 'I care for a person with dementia' started by CynthsDaugh, Jan 21, 2016.

  1. CynthsDaugh

    CynthsDaugh Registered User

    May 5, 2015
    Salford, Lancashire
    Mum got so upset last night about her lack of memory, it was heartbreaking. We were watching television (New Tricks - one of her favourites), but needed to go to the bathroom so asked me to pause it. When she came back she said she didn't know why she had asked me to pause the program as she hadn't got a clue what had gone on before. Then the tears flowed down her face, and she said she wouldn't exist without me and how much she hates how bad her memory is. I gave her big hug and told her I love her, but inside my heart was breaking at how much my totally amazing wonderful Mum who helped so many people in her professional and personal life has been left like this and it's only going to get worse.

    I know there is not much anyone can do, but just needed to let the above out. Other than my sister who lives 350 miles away there are only two people in my life who truly understand (both with parent/grandparent with dementia). I know my friends try, but they just don't get it.

  2. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    I'm my dad's unpaid carer and your right it's hard when there's no way that people could understand really what it's like. In general people try and understand but like yourself when your parent or loved one says things like that ,;eventhough we deal with everyday with strength and courage on the odd occasion something gets through our emotional shield.

    I suppose we have to allow our loved ones the opportunity to say how they feel but it's important we have the opportunity too!!

    I take my dad to alzheimers society groups , choir, craft, pottery etc. It's great to meet other carers and ironically we support each other..there's a kindred understanding and very few words of dementia but plenty of support. Hand shake, gentle tap on the back or even a cup of tea. Even laughter when needed.

    Here's the place to vent absolutely..

    Best wishes
  3. Rodelinda

    Rodelinda Registered User

    Jun 15, 2015
    Sally -I absolutely understand. I find it so very cruel that my mother who has always been active, got a 1st class honours degree in the 1940s and who spent much of the next 65 years bringing up her children and looking after her huband and organising the home, has had her world narrowed with the memories gone. If I use a normal length sentence (which I try not to do) she has forgotten the start by the time I get to the end; she can't remember what she's looking for and continually forgets how to use the TV etc. Like you, I know it's going to get worse and yes it upsets me all the time and just sometimes she realises what's going on.

    I hope your Mum will enjoy being taken out to activities/social gatherings that provide you with some outlet for sharing your feelings. Unfortunately mine just won't go to anything but luckily for me, many of my friends worked in the same caring charity as I did for a long time or seem to have an understanding of what it's like so I do get lots of support from them (and from my partner without whom I wouldn't be able to cope with my mother living with me). There are times though when the realisation hits - not just how things are now but what could happen. Keep posting and reading.

    Best wishes: Sue
  4. CynthsDaugh

    CynthsDaugh Registered User

    May 5, 2015
    Salford, Lancashire
    Thanks for the replies - it does help to hear from others going through the same experiences.

    I wish I could get Mum to some groups/social gatherings etc, but I work full time and I have been unable to find anything outside of work hours here. I've used so much of my leave allowance to take her to appointments etc. I don't have a great deal left to take regular time off to take Mum to a group.
  5. beverrino

    beverrino Registered User

    Jan 12, 2015
    I can totally relate to this situation! My mum is so aware of her Alzheimers and is continually upset and says 'I don't like being like this' 'I like to be in control and I am not'. Also 'what is going to happen to me?' - it is so hard trying to cheer her up and be strong in front of her - only to go home and feel so mentally drained and upset.

    I too work full time and have the same problems. Its difficult but TP really helps me because people understand. Take care xxx
  6. marionq

    marionq Registered User

    Apr 24, 2013
    I recognise all that you say. When you are at work she could have a Befriender through Social Services to take her to Alz groups or trips to galleries or whatever her interests are. One of the loveliest singers at our group came with a young woman that I thought was her daughter but was in fact an employee of Alz Scotland. If your Mum had even one trip a week to start with that would take some of the strain from you and give her something to get spruced up for. Talk to SS and also Alz Soc and see what is on offer.

    Arrange it first then tell her.
  7. Gwyneth

    Gwyneth Registered User

    Nov 25, 2015
    Yes, it is all so sad particularly when the sufferer still has some notion from timr to time that they are failing. We as carers can only bite the bullet and somehow carry on. My husband has just gone to put the rubbish out for the morning. I clearly told him which 2 bins to put out, the general black bin which is every week and the brown bin which is the garden waste and we pay for. He took stuff from the kitchen bin to dispose of in the black bin. What he has done is put the household waste in the garden bin and not put out the black bin. Job for me to sort without him realising. These blips just make life so difficult. He wants to help and be useful but in reality creates more work in the long run. The TV remote is another major problem and if he is on his own, and has untuned it, does not even have that pleasure of watching sport. Yet all we can do is carry on and cope. If I am critical or get impatieny the black despondency descends even further. So sad. Dementia is such a thief. Big hugs to you all who understand.
  8. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    Once again we have No idea of this lady's age therefore difficult to comment however speaking from my own experience after having dementia for 16+ years I should have thought knowing that you have a dementia problem is good for the patent to carry on and live well and take steps to control the illness of course as I said previously that depends on age at the start
  9. Tiller Girl

    Tiller Girl Registered User

    May 14, 2012
    Your husband sounds exactly like mine Gwyneth. He wants to help but ends up creating me more work. I still let him do things though as something's he can get right with a little guidance. But his memory span is very short these days.

    Cynthsdaugh your mom may not like the dementia cafes. My husband's not keen as he likes to be in denial! I'd be inclined to get someone to take her to places she likes to start with. If you get in touch with your local Alzeihmers group they should be able to give more information.
  10. CynthsDaugh

    CynthsDaugh Registered User

    May 5, 2015
    Salford, Lancashire
    Sorry Tony, I should have put more info in my original post. Mum has just turned 81, and has mobility problems (uses a frame inside, wheelchair outside) as well as mixed vascular dementia and Alzheimers. I think the diagnosis did help her accept her situation after her previous GP sent her away several times saying she was OK (when she knew she wasn't),and just age related memory loss and that there is a difference between memory and cognition. I think his reaction worried Mum.

    Mum does usually go to a care home (residents with mixed needs not just dementia) for day care while I'm at work, to give her company and also help her when her mobility becomes an issue. She's made friends there and has said a number of times she likes going.

    I do my best to make both her memory which her main frustration and mobility challenges as minimal as possible, but the times when she is in tears is getting more frequent. It's become clear she's forgotten all her cousins (8) including her Goddaughter, so I don't mention them any more.

    Sorry, don't mean this to sound so 'woe is me/my Mum'. Generally we do absolutely fine, just been a difficult couple of days. I'm hopeful it will get better soon!
  11. Gwyneth

    Gwyneth Registered User

    Nov 25, 2015
    Hi Tiller Girl. I think our experiences are similar and it sounds like we keep on encouraging little ways of helping. My husband is fab at clearing away the table, manually washing up (don't bother with the dishwasher unless we have guests), drying up and putting away correctly. Also gardening even remembering to use the safety plug for the mower. No rhyme or reason really. He soes not go to the memory cafe as it is only once a month and often clashes with other things I ensure we do!

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