1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    166
    Male
    Liverpool
    #1 Rob_E, Aug 31, 2015
    Last edited: Aug 31, 2015
    My mum was diagnosed with MCI last December and I have been struggling to cope. She still manages most daily tasks though we encouraged her to sell her car about a year ago as she was having trouble finding her way to places. She has been having problems for over 5 years though the medical profession always seem to want to play it down. Her own mother developed problems at a similar age that eventually developed into Alzheimers. We are aware that there is a very gradual decline taking place. One thing that is becoming a problem is the shopping. She still manages the shopping for the most part, she does this by adding to a list as things get low. The problem is that she keeps adding things to the list that we already have. We now have 12 rolls of bin bags for example, a freezer chocked with multiple bags of frozen veg. Even if i remove something from the list and explain that we already have a good supply, a few days later it will be on again.

    There are other things as well were for example she can't find things, even though they are right in front of her, and repeatedly makes worrying statements that aren't accurate like 'This has been the wettest summer I have ever known, it's never stopped raining'.

    This may sound trivial and compared to some of the stories I read on here it is, but with my own anxiety problems and a very recent and painful relationship breakdown with someone I am very much in love with, I'm having difficulty coping. I have a brother and a sister, my brother lives nearby but only visits one a month for half an hour. I feel that it is all getting on top of me and that I need to admit to needing some kind of help.
     
  2. AndreaP

    AndreaP Registered User

    #2 AndreaP, Aug 31, 2015
    Last edited: Aug 31, 2015
    How does she get to the shops Rob? Presumably someone goes with her and he/she needs to take control of the list and only get what's needed. If she keeps a list then check it regularly and put a small dash next to the things you don't need.

    Or just lose the list and lie about it then help her to make a new one just before the shopping is done. Learning to lie is a prerequisite for dealing with dementia patients. Her memory is probably bad enough for her not to realise that the list is disappearing on a regular basis.

    The third option is to check the list before she leaves and firmly cross out with a black marker the things you don't need. It will require some diligence to police this but the only other suggestion I have is that you get the receipt and take back all the non-perishables to the shop for a refund.

    I'm sorry you have to deal with this when you are grieving for your relationship. I hope mum's compulsive shopping (not unusual) is the worst you have to deal with.
     
  3. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    166
    Male
    Liverpool
    Thanks. She gets to the shops herself at the moment, its only 5 minutes down the road. I think its possible that sometimes she just can't find things and so that's why they end up on the list. I wish the shopping was the only thing too be honest.

    Also there are the funny statements like she will say "This television picture is so much better today", even though nothing has changed with the television. Speaking of the television, I'm also finding that she has trouble understanding things that are being said on the television and so up goes the volume to a level which is far too high. I don't know how much of that is a hearing problem or a problem related to her condition where she misunderstands things. Some of the things she thinks people have said just obviously don't make sense.
     
  4. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    Hi Rob. Everything you are saying here are things I am going through more and more with my O H . He watches TV but when I make a comment about what's happening on the programme the stock answer comes back " I wasn't looking I was thinking about something else " he actually can't follow any programme but watches all night. I suggest it's not a hearing problem but get it checked . Again like your mum he makes things up like I've been here before / I've seen this before / I've heard that before but can't remember when or why ,but I think this is just a cover so that we think he is in the loop. Pretty clever really .Same as you mum ,to make you think she is up to date and she thinks it makes sense therefore it does ! Don't dwell on it just go with it,saves the anghst.. The worst things are when he makes things up about people stealing or talking behind his back I pretend I haven't heard and change the subject. Shopping I give him a list for the local co op and he just finds an assistant and gets them to shop for him .Genius I say. But with so many other thought processes going wrong ,frustrating,soul destroying and lonely for the carer.

    All sounds simple when written down .If only it were .
     
  5. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    My mum has a similar problem with the recognising things. Basically although her eyes are looking at 'peas' and she herself knows they are 'peas'the brain won't retain that information or recognise them as peas itself. So although what she sees is in front of her the word is in her head but the brain isn't tying up the two things.

    Also in respect of the picture being better today on the TV may mean her blood pressure has altered from the previous day as this plays a big part in vision too.

    Has your mum still got the ability to read or write, spelling badly. This is another downturn my mum has. Even holds cards upside down and pretends to read them. Dementia sufferers are good at disguising things rather than admitting.

    How about you offer to do her weekly shop online with her and get it delivered, then you can check freezer before ordering and you won't double up. If she says she needs bread three times that week you just order the one and tell her each time ok I've ordered that.
    Would it be easier for her to just have ready meals to cook rather than all the ingredients, to save ordering everything individually and. Easier for her to cook.

    Sorry to hear about your relationship, just take one day at a time, that's all anyone can do. Set yourself a small target everyday. Even if it's just a kind smile to a stranger one day it will get better, and well done for caring for your mum. She would be proud of you.
     
  6. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    Rob, welcome to TP, I take my mother shopping, and she makes a list, (but I do too) and then we shop together, we get the same things every 3 wks so not too bad, but yes have to watch toothbrushes and toothpaste and toilet rolls, but then you can't really have to many of them........

    As for repeating things, everytime we go out in the car it's "How wonderful the trees are , how big they are, sorry that is something we have to put up with.
     
  7. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    166
    Male
    Liverpool
    There are indeed certain things that we end up with. Another is rubber gloves. In a lot of ways I'm glad she is still wanting to shop, she doesn't do too badly really, it's just something for us to keep an eye on and also I definitely need my brother to be more involved, I plan to ask him round for dinner with us this week. The doctor told us that it was quite an unusual case as she scored very well with some of the tests but very low with others. She's good with spelling and word games, she even gets the conundrum on countdown sometimes. She struggles with anything that requires memory and logic or maths. To some extent this has always been the case but of course it has become progressively more noticeable over the past 5 years.
     
  8. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    Rob, you're in what I see as Stage 2 of dealing with a diagnosis of Dementia (Stage 1 being shock and denial). Every sign of it sends you into a fearful panic. As you adapt and accept what is happening you will learn to 'pick your battles'.

    What I mean by this is: the repetition, the odd comments about the weather, while all being signs and symptoms which will highlight what is happening to her, are not really causing any harm. Likewise a lifetime supply of binbags and rubber gloves aren't the biggest disaster ever - unless money is tight of course.

    If she gets LOST on her way to the shops, that is something that SHOULD ring alarm bells and requires immediate action.

    I agree with you that, for now, her keenness to do the shopping is something that should be encouraged and prolonged as long as it is still safe for her. The option for online shopping is always there as a backup as and when it's needed.

    Use the instances of her coming out with strange things as a way to keep track of the progression of the Dementia rather than Chimes of Doom or you will drive yourself bonkers. That way you can be aware of what is 'normal' and what might indicate a drastic change, such as a UTI (urinary tract infection, very common in Dementia patients as they forget to drink fluids) which can cause them to suddenly behave very alarmingly.

    And treasure the times you spend with her when things are jogging along nicely, even if she is coming out with weird stuff, and you can have a chat with her about your day etc.

    So sorry to hear about your heartbreak. Dealing with your Mum's diagnosis is hard enough without the trauma of a breakup too which will automatically make everything more overwhelming and impossible, especially if you relied on that person for support. My boyfriend of 5 months couldn't have been more supportive, verbally anyway, when Mum had her first stroke and her Dementia accelerated, telling me he'd be there to hold my hand whenever I needed him, that he would always travel the 60 miles between us when I wasn't able to get away etc etc.

    Well, fine words butter no parsnips indeed! At the first sign of him actually having to act on his promises he dumped me by text blaming ME for not being as affectionate to him as I had been at the start of our relationship, thereby causing him to feel rejected and driving him to the arms of another woman... nice huh?

    Luckily I had angry hatred to get me through it, sounds like you don't have that at the moment.
     
  9. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    166
    Male
    Liverpool
    Thanks for the comments, it's good to share these concerns, I know it's early days and some of the things seem trivial but they are still worrying. I have only really recently started to accept the situation with mum even though I have known for a long time.

    The relationship I had didn't finish due to my mums condition, it's quite complicated and been very upsetting as I have lost a great friend who I had a lot in common with. I won't go into it too much here but it was one of those things that doesn't come along very often.
     
  10. AndreaP

    AndreaP Registered User

    The loss of anything catapults us headlong into the grief cycle. Breaking up with a loved one is unique because the person didn't die they just removed themselves from our life. Not only do we suffer loss but rejection and knowing the other person is happily getting on with life while we are suffering is an added torment.

    One reliable cure is finding a replacement but we don't always feel like even attempting that at the beginning. Just try to inject something pleasurable into your life every day even if it's re-runs of a favourite TV program or reading a new book. The brain can't concentrate on two things at once so a brief respite from our grief is a welcome relief.

    Time does heal all wounds. Gradually the routine of our new single life begins to become familiar and we mourn less and less for what we've lost. Don't get bogged down in any part of the grief cycle, just try and move through it in the knowledge that this is what we risk when we enter relationships. If you loved the person very much try to understand that sometimes we need more than we are needed and while that sucks it's just part of the journey. I've dumped and been dumped and the former was always something I needed to do but hated doing. Finding that equality of feeling in a relationship isn't easy but don't give up. You may well look back on this in time and be grateful because something better was waiting just around the corner.
     
  11. Rob_E

    Rob_E Registered User

    Feb 1, 2015
    166
    Male
    Liverpool
    #11 Rob_E, Sep 6, 2015
    Last edited: Sep 6, 2015
    I must say that in part that is what has been so painful, they left me for someone else. They wanted us to be friends as we really do get on well and have a great deal in common, but all I was getting was what a wonderful time they are having with their new partner so that had to stop. Also, the new partner sounds to be quite manipulative and controlling, making decisions for them and laying down the law, insisting that they give up things they have always loved for many years for example. But they can't see this, even though everyone else can. The old saying of 'you've made your bed now lie on it' springs to mind, got a feeling sometime in the not too distant future they will realise things aren't so rosy when it's too late, I'm not waiting around for them!

    Anyway going back to mum, I am feeling a little better about that now I have started to accept the situation, its been very difficult even though we have known for years. She's still our mum and we still love her. We can now start to make some adjustments that are required.
     

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