1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,918
    Suffolk
    Ouch, Slugsta! I darent add up all the money I’ve spent on glasses over the years. These days it’s varifocals. Even more expensive!

    I agree about changing when you leave home. Seen it in the grandkids as well. And certainly I did!

    Ann, pleased about mils changes, at least it’s not so bad visiting her. I always reckon that was the last thing OH did for me - not hang around in a CH! Bless him.

    The idea was to do paperwork this morning! As it’s 11:00, I’d better try to do something!

    Good wishes to all!
     
  2. tflett99

    tflett99 New member

    May 5, 2019
    1
    This happens alot with my dad who is 91 and is also a diabetic. Its really random, and seems harmless, but really weird. I have learned over time that the best way to deal with this is not to argue. you will NOT win. Instead, acknowledge what they say, but vaguely. IE: dad told me that the picture on the wall was stretching up.its now about 4 feet tall. My response is, as i look at the wall...hmm thats pretty strange. I then quickly change the subject or redirect to a different topic or activity. He rarely mentions it again. Its just a tip, but it works, and is so much more effective than arguin. Hope this helps.
     
  3. Slugsta

    Slugsta Registered User

    Spamar, I have been wearing varifocals for some years. I love not having to wonder where my specs are (cos they are on my nose) but I don't love it when the times come to pay for them!
     
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,918
    Suffolk
    Ages for varifocals. What I did used to lose was sunglasses! No need for that now, at least! Have worn glasses since I was 7, they’re just getting more complicated and more expensive!
     
  5. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Morning all,

    My sympathies on the cost of the new glasses, Slugsta - I've scratched the lens on mine (not badly, thankfully) and am dreading the cost when I get around to replacing them. At least mine aren't varifocals, though - so expensive!

    I saw my older two change a lot when they left home for uni, too Spamar. Not so much with oldest - she was pretty responsible anyway when she left - for her the difference was in money management - she had to learn it pretty quickly, and to be fair, we only bailed her out once, in her final year, when she was swamped with books and other heavy costs when heading towards her exams. Son - well, he learned to do something that I'd never been able to get through to him, though I had tried - he learned to cook, and to cook with fresh ingredients at that. I'll never forget the shock when he came home that first Christmas and casually mentioned that he was going to cook us a meal, and listed vegetables and other ingredients that he previously wouldn't have touched. But, there were no concerns about them being slovenly to live with, or temper tantrums, unlike with youngest. She is currently filling out the application for the local uni - late, but she has been to see them, had an interview, and in light of her experience has been told she will be offered a place on the foundation course she wants - that's if she gets the application in! Its been sitting, open, on the computor for 2 days now, still not finished!

    She took my ultimation, regarding paying for her share of the holiday in reasonable installments, far more calmly that I expected, and although she initially suggested a very silly, low amount for paying for her share, she agreed to a more sensible amount, easily enough. Which was a relief. Short lived, as that was followed by a strop over her room - once again, missing towels that turned up along with a small mountain of other washing, on her bedroom floor. But, checking her room at least once a week - although she objects to this with fury - means that it can't deteriorate to the state it was in before, and all I can do is keep it up and hope that keeping it decent eventually becomes a routine and habit for her.


    Hi @tflett99 and welcome to TP :) Oh, I agree 100% about agreeing to avoid rows and upset. Trouble is, responding like that with Mil could be problamatic. Unfortunately, until very recently her dementia was driven by paranoia and delusions that left her angry, agitated, terrified or confrontational (or a combination of all those reactions). The bizarre itself, I had no problem with - it would have been easy enough to go along with her claims that she knew Terry Wogan personally or performed nightly on a stage with her co-star, the horse. Not so easy when she then starts demanding that you phone Terrys' parents, or that you open the front door so she can catch a bus to the theatre she thinks she works in. And when her dementia is such that she won't/can't be distracted by anything you say, when 'I'll phone later' or 'I've lost their number', or anything else you try, leads instantly to melt down and accusations of lying or being cruel, her then banging on doors and windows and attempting to get the phone so she can call the police - well then, its a whole different ball game, sadly. Compassionate communication - agreeing with a pwd, entering their reality, distraction, not contradicting and love lies - must be fantastic when it works, and I am so glad for your sake that it works with your Dad - but there are a sizable number of pwds for whom it doesn't work, who are resistant to everything it entails. And there are some situations where you can't agree and can't avoid contradicting because it would fuel the delusions and hallucinations. None of us could agree with her when she insisted that her son (My husband) was her husband, for example - because to do that led to extremely innapropriate behaviour, her demanding that (as I must be the fancy woman) that he throw me out of the house, right now and when he obviously couldn't/wouldn't do that, it would lead to screaming meltdowns where she was in danger of hurting herself. Going along with her would have meant us living 24/7 having to avoid any normal interaction, and having her inviting him to 'come to bed' or trying to kiss or touch him in a way that just couldn't be accepted. That delusion (only one of several recurring delusions the poor woman suffered) eventually led to her physically attacking me, and that's what led to her going into residential care. Over the last 6 years, I've had Community Psychiatric Nurses, day care staff, social workers, support staff, nurses, doctors, consultants, and staff from the EMI nursing home she now lives in, advise that we try distraction and CC, and assure us that it will help - only to come back to me, after they have had actual experience with Mil, and tell me in amazement that it 'doesn't work' with her. And there are lovely carers on this thread, and across TP who will confirm that they have experienced either that level of resistance and/or behaviours/fixations that you just can't go along with, sadly x

    OH has been to see Mil, and again, food served without it being cut up - so a visit to talk with Nurse L on the horizon - just hoping it doesn't morph into another battle, like getting them to use her cushions did!

    Very quiet BH weekend here, mainly due to the cold and rain making the prospect of trips out unattractive. Its actually been nice just to chill. I've pootled round the house, read books and basically been pretty lazy for me. Makes a nice change!

    Hope all of you are having a good BH weekend, and sending love to you all xxxx
     
  6. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Morning all,

    Hope everyone is OK?

    Just a brief pop in. Mil is still chugging along. I visited on Friday, she was in her room, quite happy watching the TV. No idea who I was 'You're a cousin or something, aren't you?' she asked. I agreed I was, gave her my name - and she then called me Phyllis for the rest of the visit :D Not very chatty, but very chilled, and not really bothered by me being there. Lunch was served whilst I was there - a rather large beef burger, on a bread roll, with fried onions and chips. She couldn't manage the burger, even with the bread removed and the meat cut up - a few of the chips she more or less sucked to death, then gave up. She clearly told me NO when I offered to help her get the chips from the plate to her mouth. And then, after about 35 minutes, she very clearly told me 'I want to be by myself' - so, I got a kiss goodbye, and I went.

    I stopped on the way out to speak to the manager about her food. They are waiting for an assessment before moving her to a soft diet - they can't change her to soft food until the assessment, but they didn't know when it would be! I asked could her food at least be cut up into very small pieces, untill the assessment took place - hopefully, they will listen - and hopefully, poor Mil won't flipping choke whilst they are waiting for the assessment!

    Busy, as always - last week saw me single handedly decorating the upstairs bathrrom - took me all day, it looks great, but boy - did I pay afterwards! Saturday, I did a 14.5 hour day for work, helping out at a National event. I did get it in writing beforehand that I can take the time back, at my convenience. Slightly shocked and disgusted by an email sent out after the event, to many of us who helped out, informing us that we could log the hours as 'voluntary' if we liked! Er - no - I work, I get compensated for it - end of!

    I hope everyone is OK, thinking about you all and sending love as always xxxxx
     
  7. 2jays

    2jays Registered User

    Jun 4, 2010
    11,589
    West Midlands
    Gold star for decorating bathroom. When we achieve something on our own it really makes it special doesn’t it.

    Gentle slapped leg for doing it on your own :)

    Still having to battle then Ann?
    If it’s not battling for MIL, it’s also to do with work. So frustrating!!

    Mind you, if it’s “only” to do with MIL’s diet, what a relief you must feel after the war you have been through for her..... but it’s sad isn’t it when the need to battle so hard has lessened, because the person is also being more and more lost - if you know what I mean. I know I had a sigh of relief hearing that she seems more content, but sad too

    I’m still awaiting results. I have an appointment with GP next week, the earliest I could get when booking 5 weeks ago. I’m feeling better than I was. I still get swollen glands, randomly, without a temperature, that’s when I feel very washed out, but I am able to function better than I have been.

    1jay has had his 4th lot of anti bios in the last 6 weeks. These seem to be working, but he has to take time to feel really better as he’s been ill since January. He’s frustrated that it’s taking the time it is, and wipes himself out of energy regularly. But these times are getting less and less :)

    So all in all the 2jays are looking like they are on the up health wise. Decided we would be pushing our luck going away to foreign, so have decided to spend short times away looking around the uk.

    Love to you Ann. Don’t let the work monsters grind you down :D

    Love to all others reading. Hoping today goes as well as it can do xx
     
  8. CandyCrushed

    CandyCrushed New member

    Apr 6, 2019
    8
    Hello Ann,
    Hello JM, Slugsta, Spamar, Amy, 2jays and everyone who posts here.
    I hope that you won't mind me making my first post on your thread....... I joined a month or so ago, and have read right though here.
    I just wanted to thank you all for being so frank, and open, and inclusive. I feel that I have a much better (and realistic?) insight into my family's situation..... I really hope so.
    Perhaps I can help my mum (pwd 82) and Stepdad (carer 89) in a much more compassionate and understanding way thanks to your generosity.

    My love and thanks to you and yours.
    Candy
     
  9. Moggymad

    Moggymad Registered User

    May 12, 2017
    337
    Female
    Hi @Ann Mac we had similar issues with my mum who is now on a purée diet. However I was told if she needed purée then she should also have thickened drinks & an assessment was needed to determine what thickness she needed. There is also a long wait for this here too. I was told 6 months! The manager agreed to put mum on soft food to start with & she now has either soft or purée & as far as I know no one has assessed her. It just seems common sense to do this when it is necessary. Mums swallow is fine it's the ability to empty her mouth that's the problem, getting the food in position to swallow. Mum lost quite a bit of weight over the months which has now stopped with the purée or soft food. Still manages ok with her normal drinks but does cough a bit sometimes. Surely it's crucial for the care/nursing homes to have some flexibility in the type of food they can provide for their residents without having to wait months for assessments.
     
  10. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Morning all,

    2jays, I'm so glad that the Jay household seem to be finally getting better! Its about time, you guys have had such a rough ride recently. Hopefully it won't be long before you can head off to Fuerteventura or Landsagrotty again. Its the thought of getting into that lovely sunshine that keeps me going (only 123 days to go!)

    When I stop and think, it really hits how bitter-sweet it is that we are so happy that Mil is finally having a really calm and content phase, because acheiving that has been brought about by a pretty big deterioration in her health and abilities. But thats the nature of this foul disease, I guess. I can't quite believe that this calm phase will last - though God knows, I am hoping and wishing and have everything crossed that it will - and being honest, a big part of me is thinking it would be so kind if she could drift away in her sleep, now, whilst she is so peaceful. If I have to fight to sort the food issue - well, that doesn't seem so daunting now, not compared to what we have had to fight before. Plus, because she is so calm, in a very odd way, it calms us, I think. It makes dealing with any minor issues less fraught, we are all just so relieved that the agitation is nearly non-existant, and its almost like while she is calm and content, we can be too - if that makes sense? I know its made a big difference to OH - he is visiting more than he has ever done, which is lovely, and I know he feels happier about being comfortable being able to do that. Its also - and this is quite selfish - taken a lot of pressure off me. I'm OK with going once a week, and don't get too stressed even if I have to miss the odd week. Even youngest has been to see her, after a break of around a year, and though she was clearly shocked by the physical deterioration, the lack of anger, fear and misery meant she was happy to be with her Nana again.

    I forgot to say, about when I saw her on Friday - for the first time in literally months, Mil didn't make any attempt at all to hurt me! No attempts to slap or pinch, she didn't even try to squeeze or twist my fingers. And it was only after I left that I realised this. OH reported that she didn't try to hurt him when he was there on Monday, either.

    Welcome to TP, @CandyCrushed - though I'm sad for you that you have had to find us. I am so glad that you think the posts on this thread may help you - the support from all the lovely people on here has kept me going at times when I was at my wits end. I hope you are able to access lots of support for your Mum and Dad, and I hope TP can keep you going, the way its kept me going, as your journey continues xxx Feel free to post here, or wherever, as you need - I can guarantee that someone (probably several someones) will quickly jump in to help, or even just listen xxxx

    Hiya @Moggymad - even if they would just ensure that the food chosen for her (there are usually a choice or at least two, often 3 options, at each meal) was more suitable, and - most importantly - cut up quite finally, it would be better. Not sure why they say they would need an assessment before they could at least do that? The liver from the previous visit was actually quite tender, and once it was chopped into tiny pieces, with help, she really enjoyed it. The burger, I thought, was a joke. No way can she manage a large bread roll, she can't use a knife now, struggles to even scoop with a fork and bless her, no way will she wear her dentures either. Chunks of bread seem to be near impossible to 'gum' into submission! From what the manager said, they have someone (visiting regularly, I think) who is qualified to do the assessment - its just a case of this person getting round to Mil! I'm planning on a visit at either lunch or tea time tomorrow - if she is served a meal she obviously can't eat again, I thought I might just take it down to the office, and very politely ask how Mil is supposed to eat it? She has always loved her food, and still enjoys it - when its served to her in a way she can actually manage to eat! She certainly tucked into the liver the other week, once I'd chopped and reduced it to a point where she could manage to eat it!

    OH and I are still busy getting stuck into house and garden when we have time! Hall, stairs and landing are next on the house list - though quite when that will be, I don't know! I can't reach to do the paintwork on the stairs, so 6ft 4" OH is needed for that bit - but he is flat out on his latest garden project at the moment. Building a pizza oven and putting in an outdoor kitchen type area! The decking at the bottom of the garden needed replacing (nearly 16 years that's been down), and that was the plan - just to replace that. Then he saw something about how easy it is to make your own Pizza oven, and decided to replace the decking with pavers and make said pizza oven himself - so out he went, bought one of the big inflatable gym balls, and spent several days constructng said oven, which is now nearly ready for final process of firing it. I have to admit, it looks extremely professional! And his plan has expanded to add a sink and a canopy, outdoor lighting, space for the barbie and fences around that area . . . Oh, and he has added a jacuzzi to the patio area by the house too! By the time he has finished, it will be more comfortable in the garden than the flipping house!

    Youngest still hasn't completed the uni application and there are regular weekly mini-meltdonws over her bedroom - though we are making her (reluctantly) keep on top of it. Its her 18th on Friday, and she has plans for a meal with her mates, followed by a club in Chester! Oldest is quite happy in Coventry and spending a lot of time helping her best friend prepare for her wedding in October (oldest is chief bridesmaid); son is in the middle of moving house (or trying to - new landlords agency is proving to be totally incompetent at the moment!). Son is also now into his 3rd week of prison officer training - and loving it! All furry family members are doing well, even 17 year old Busta dog, who is still plodding on - slowly, nearly blind and deaf, but still eating, wanting (short) walks, enjoying cuddles and wagging his tail. The garden is full of baby birds at the moment, which is bringing me a huge amount of pleasure too - especially the baby bluetits, who I've yet to get a decent pic of, but who are soooooo cute!

    @Slugsta , @Spamar @jugglingmum @Amy in the US @canary and everyone else - hope you are all OK - sending love to you all, as always xxxxx
     
  11. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    Yes, it is indeed bittersweet that your MIL is more peaceful now, I do hope you can get her food sorted out. Why is everything such a struggle in our lives?

    Your garden sounds lovely. Brick built barbie? Kitchenette area with sink and canopy?! Jacuzzi on the patio?!!! Does your OH do commission? I could certainly do with someone like that around here - the best OH can do now is remember where the switch to turn on the water feature is located!
     
  12. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
    Dear Ann, reading with interest, as ever... it's all go at your place!

    However.... I am intrigued by:

    'so out he went, bought one of the big inflatable gym balls, and spent several days constructng said oven...'

    OK, I can't be the only one struggling to work out where exactly an inflatable gym ball fits in a pizza oven - please tell us more!
     
  13. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,030
    Female
    Chester
    Not time to update but I agree with @Jaded'n'faded - I did reread several times to try and work it out

    Maybe he used it as a former to shape the oven over and then burst / removed it when the bricks were set.

    I have been to London and Sheffield last 2 weekends, and can confirm that I well and truly have 2 teenagers in the house. Fun, not.
     
  14. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
  15. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    Mitts off. I asked first
    [​IMG]
     
  16. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    #9917 Ann Mac, May 16, 2019
    Last edited: May 16, 2019
    Lol, everyone! I never thought how odd it would sound, referring to the gym ball to build a pizza oven :D JM - you have it right! OH used it as a sort of mould - and he even incorporated the chimney flue that came crashing down into our garden during that awful storm a few weeks ago - that has made for a great chimney on the oven. Talk about waste not, want not!

    So - you start off with a wooden base, with a hole cut out that the gym ball rests in.

    57738868_1821269921306650_3270913781143699456_n.jpg

    You add (in OH's case) a plastic container of some sort that forms the opening for the oven - and cover the whole lot in cling film
    57649368_1821269961306646_3914920990190075904_n.jpg

    Then you start to build the shell around it, using chicken wire to strengthen it

    57561072_1821270007973308_6205267830414245888_n.jpg

    58443087_1821270131306629_8531071850459955200_n.jpg
    And then you add the 'chimney', and it goes through a drying process, which includes lighting small fires inside it, to 'fireproof' it - its a lot further along than this now, but these are the only pics so far :)

    57462779_1821270217973287_4092473168680189952_n.jpg

    And that is how you apparently make a pizza oven - Mr Mac stylee :D

    @canary - shhhhhhhhhhh - no, not a brick build barbie, a bought one - but please don't give him any ideas! And ladies, you can borrow him, of course - just as soon as he has finished helping me sort the rest of the house (and the pizza oven and his outdoor kitchen, too :D )
     
  17. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
    You're on :p

    My house is falling down. Don't know whether to try 'My Builder' or 'Tinder' :oops:

    P.S. Google 'The Guilty Feminist'...
     
  18. CandyCrushed

    CandyCrushed New member

    Apr 6, 2019
    8
    That's absolutely ingenious Ann - well done Mr Mac.

    I enjoyed listening to the birds with Mum and Stepdad In their back garden yesterday, after bringing round their shopping. It wasn't very restful though - your thread title "So Bizarre" was what first brought me here.

    Poor Mum has an abscess 'down under', and a nurse from the local surgery had been to check up after antibiotics were prescribed by the doctor last Friday.
    Mum wouldn't allow her to examine the sore place apparently, so with issues of 'consent' etc...... She'd gone on her way, leaving Stepdad with two sterile packs of gauze. :(

    He had no idea what he was supposed to do with that.
    I had no 'luck' in persuading her to let me to have a look either.

    Stepdad resists any help, support, respite, cleaning, caring.
    If I'm not very, very diplomatic - any and all suggestions or offers from me are taken as interference.

    I NEVER had a good relationship with my mother (left home at 17)..... further compounded when she 'ran off' with Stepdad and his younger children over 30 years ago.
    I had 5 children, and one part of me thinks, well she never helped me (although that's not strictly true, it is almost),
    The other part of me is absolutely wracked with guilt.
    But they're really struggling now.
    She doesn't know that I'm her daughter, if she did I'd probably be even less welcome.

    I guess that like so many experiences I've read about on TP, that it will only be a crisis that changes things.

    Many hugs to all.
    Candy x
     
  19. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,030
    Female
    Chester
    Hi @CandyCrushed welcome to TP.

    Hope getting things off your chest has helped.

    I did have to smile at leaving your step dad with 2 packs of sterile gauze, you do have to wonder at health professionals sometimes.

    I'm afraid 5 children made me shudder, coping with 2 teenagers is a struggle for me at the moment. Son is being a bit of a nightmare and we have first A level for dau on Monday.

    I did have a good relationship with my mum and I think it does make it easier, although there was a lot of what I now think was dementia behaviour which was nasty and critical to me in the years before crisis which I have found hard to get past.

    Keep posting, as it helps all of us to muddle along.
     

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