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. Cocoloco

    Cocoloco Registered User

    Dec 29, 2018
    15
    This is really interesting,all my mums tastes have changed. She now takes sugar in her tea, eats cake biscuits cream buns chocolate etc as if they are going out of fashion. She will not eat any vegetables or drink plain water, it's as though its poison. If it's not sweet she doesn't want to know. She also makes wholly inappropriate comments about people in the loudest voice ever. After all her life being smart in her appearance of which she was very proud she now spends her time in the care home going around other people's room taking their clothes shoes etc and wearing them if they fit or not . When I try to remove them from her room or try to get her to change into her own things she has a complete meltdown.
     
  2. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    398
    My dad and vegetables have become a real issue. I made a ratatouille, which my dad ate completely. 3 days later I roasted the left overs of the vegetables and he threw all of them in the bin. The exact same vegetables he ate earlier he now doesn’t like?! The following day I then put peppers in a dish, he ate them all!!
    My dad is only earlier stages but I’m really starting to realise how hard this is going to be
     
  3. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    Yes Mum is early stages as well. Last month she was eating cheese sandwiches everyday. Now she tells me there is no point in buying it for her as she does not like it.
     
  4. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    Hi. Yes many of those apply to my Mum too. I used to be accused of moving and hiding stuff but over the last few months it is the man that comes in during the night. I now find post it notes everywhere saying ‘ do not move’ or ‘do not use’
     
  5. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    398
    We have started to leave some notes for my dad so he doesn’t forget things. Like don’t forget to put jacket potato in oven at 4.30. He hates us doing this as he thinks we are treating him like a child. But if we don’t do it then he might forget and when he forgets things he berates himself calling himself an idiot. So not sure if doing right or wrong, as it is only mild at this point
     
  6. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    I take Mum shopping once a week for groceries but a friend will also sometimes offer her a lift. When I next go to visit there appears to be total random items of food in the fridge/cupboard. Food items I have never seen Mum eats and she says that I put them in her fridge. I suspect she is just buying random items to appear ‘normal’ to her friend. Is this common? Thanks for any feedback
     
  7. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    Feeling bad. Due to some commitments I had pre Mum’s diagnosis I had not been able to stay overnight with her for the last month. Just day visits. She had complained about her telly not working properly on the phone but I had just put it down to user error. Only found that channels had not been updated (which I usually do) so most channels were pixelating so she had turned it off in frustration and sat in silence for the last 2 weeks every evening. So lesson to learn - listen better and don’t assume. It may also help to explain why she was more ‘fuddled’ the word she uses, over the last week or so.
    I rang her when I arrived back home the next day - a 2hr journey- to say I was home safely and she had forgotten that I had been there the last 2 days. She was a bit better this morning having remembered I had been there but did ask me why she was wearing a nightie in top of her P.J’s. Every time you think you are getting a handle on this illness it throws another curved ball
     
  8. Rach1985

    Rach1985 Registered User

    Jun 9, 2019
    398
    Yes my dad has been on memantine and have seen improvement in his short term memory. Remembered appointments etc but then today just felt like a step backwards. Keeps taking his watch off and on again. Not following a simple instruction, or what would’ve been classed as simple in the past, randomly decided he needed a change of clothes at 4pm for no reason. Then makes a phone call but does it outside as doesn’t want me to hear as it’s a personal secret.
    I agree completely you think you have a handle then you have a tough day like what’s this now?!
     
  9. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    As mentioned on the earlier post Mum was really confused when I rang to say I had got home. My Mum’s very good neighbour rang me yesterday to say that she had found Mum outside of the neighbour’s house very confused and disorientated at 8pm that Tuesday evening. Luckily the neighbour managed to get her back into her home and settled her down with a cup of tea. This is the first time this has happened
     
  10. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    So tonight my Partner tells me that I am making decisions for my Mum without listening to Mum. Apparently I do the same to him so much that he feels like a tenant in our home. I feel so down and just cried for hours. I thought I was doing a reasonable job of juggling everything. :(
     
  11. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    482
    Female
    High Peak
    Oh the loud, rude comments! I dread having to go with mum to a hospital or similar. She's always been a horrible racist but these days she lets everyone know. Several times I've wished the ground would open up and swallow me. Or her.

    Back in the early days we took her on holiday where she complained loudly about absolutely everything. That week made me realise my fears that she had dementia were well-grounded. The worst time was when she went to 'coo' over a woman's baby. She leaned down into the pram then turned to me and said very loudly, 'My god, what an ugly baby!' o_O

    Mum never took sugar, now she wants it 'there on the saucer so I can eat it'. :eek:
     
  12. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,676
    Female
    I think it is. My mother used to claim she had no problem doing the shopping, but I think she just picked random stuff off the shelves. She never had anything in the house to eat (and couldn't remember how to prepare it anyway). She acted as if everything was fine and it took me a while to realise what was happening.

    I recognise the other behaviours mentioned too. I would sometimes ring and my mother would sound confused and hesitant and I could tell she couldn't follow what I was saying. A few days later and we'd have a perfectly normal conversation. It was so tempting to think she was 'really alright' when she absolutely was not. I never knew why the variability happened. This stage was about 4 years ago, she's in a care home now.

    As for what your partner said - I don't know what his problem is but you have to make decisions for your mother, she is no longer able to. I hope he is usually more supportive.
     
  13. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    #33 Bikerbeth, Jun 30, 2019
    Last edited: Jun 30, 2019
    Thank you - your comments they were very helpful and reassuring. A new day a new dawn as they say.
     
  14. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    At least I have not had to contend with that ....,.,........yet
     
  15. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    Well after the last week or so this morning I arrived to Mum’s. The day started with Mum in tears due to her frustration of not being able to remember something she wanted to tell me. A far away look in her eyes when we went to her favourite cafe for lunch. More frustration in the supermarket when the people behind her in the queue and the cashier were getting impatient when she could not find her money. They shut up when I made a rather sarcastic comment to them but the damage was done with mum nearly in tears again. However the day ended on two good notes. At Mum’s instigation we had a long chat about care homes versus her staying in her bungalow and going to day care etc as she says she is very lonely. No doubt a conversation we will have many times. But the best bit by far was us behaving like a silly pair of kids ‘arguing’ over her using my bathroom ( really her small cloakroom) instead of her bathroom To the extent that we were both ended up giggling and laughing as the conversation got sillier and sillier and 30 mins later she went off to bed with a big grin on her face. A moment to cherish and probably one of the best times with my Mum ever as she can be quite reserved with me
     
  16. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,676
    Female
    It's good that you can still have a giggle together, and also have the care home conversation (and yes, no doubt you will have it many times!) My mother had several hours of company from the carers at home but as soon as they left she was lonely, and she did not have the insight that a care home would be the best solution.

    There is a resident in my mother's care home who often comes over to see us, she still has good verbal skills and is very friendly. She told us (and it actually turned out to be true) that she'd discussed it with her children and they agreed amongst them it would be best if she moved to the care home because they work all day. She is very outgoing and she loves the company. I think this is very unusual - that she was able to discuss it and come to an agreement - but possibly you could have the same arrangement.
     
  17. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    Yes I think I am very lucky that Mum is instigating the Care Home option even if it does end up with the ‘not yet’ situation. If I can get her to have a look around or do a respite it would give me an idea of what she would like going forward when she may not be able to articulate or know what she wants so much. Mum has carers in twice a week who know to chat to her as they clean. I think some ‘chatting’ is appreciated more than others but the agency do try and send the carers she likes most of the time. How did you get your Mum to go into a care home?
     
  18. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,676
    Female
    You need to bear in mind that there will probably come a point where your mum's needs will trump what she wants - she may keep saying 'not yet' way past a point where independent living is safe or desirable. So you may have to make a hard decision.

    I didn't discuss it with my mother, I knew she would refuse to leave her flat because of her cat. She would have been really distressed at leaving him and would never have said yes while he was around. He was old and I was hoping he would die a natural death, but he kept on going! By this point she had 6 hours of care a day (v expensive) and it wasn't enough, she was very anxious when the carers weren't there and started wandering (winter, no coat, no keys, drenched in rain, trying to get into strangers' cars, at risk of falls - I had a lot of increasingly exasperated contact from her neighbours). So I told her she was going on a short break near me and moved her. She was unsettled for the first week or two, but then settled in well, and quickly stopped even mentioning 'home' or the cat. She adopted a large group of cuddly toys as a substitute. It was a very stressful couple of months making the arrangements - for me, she knew nothing about it. (I rehomed the cat by the way!)
     
  19. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    294
    Bedford
    I guess in my optimistic world my Mum will have a fantastic time at respite and make the decision to stay on which would also save me a difficult discussion with my brother who lives 200 miles away, now visits for 2 days once every 3 months after a 2 year absence and thinks she is just a bit forgetful. Will worry about that when the times comes
     
  20. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,676
    Female
    That would be a nice outcome, I hope you are luckier than most.
     

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