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. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Morning everyone - and yet again, thank you all xxxxx

    I know that everything that you have all said is 100% right. Having Mil back here wouldn't make a blind bit of different to how she is now, it would just make life incredibly hard and awful for me and OH, and more importantly, for our youngest. I wouldn't be working, OH would never have been able to sustain working nights in his new job (which he loves), youngest wouldn't have had her pumpkin carving party or sleep overs, I would have been absolutely dreading Christmas (again), be knee deep in washing . . . and Mil would still be asking, pleading, demanding and begging for 'home', for her Mum, to go to work, for her missing 'babby or little one' or for any other number of impossible delusional 'wants' and we would have been dealing with not only the verbal aggression that we had before, but physical aggression too. I really do know that it wouldn't be possible to cope.

    Its just that wish that we all have that it could be different. And even while knowing its a complete waste of time, I do still find myself, despite everything I know to be true, thinking at odd times, 'Could I have done it?'. And even as I think it, I do know that I couldn't - but stupidly, that thought still creeps in. I suspect that every single person who has had to face the decision that their loved one now needs residential care has had to deal with that - and I will just have to learn to deal too.

    OH is planning to visit Mil on Sunday, so when he asked, it seemed pointless trying to play down the way she was, especially given that from what the staff said, she is like that the majority of the time. I'd rather he was prepared, so I told the truth and found myself getting upset again. And angry. I said - and I know it might offend, but its how I feel - that at this point, she is so tormented that it would be kinder if we were able to go and buy a gun and shoot the poor woman. I know its 'early days' but this is a continuation and worsening of what we have seen happening for the last 12 - 18 months, a steady progression of how this illness seems to be affecting her, and I think there is an awful possibility/probability that it will contiue like this and she will remain this tormented till the end. Which is just too horrible to contemplate. At the very least, if it was an option that was available, I'd agree to her being pumped so full of sedation that she simply slept away what is left of her life, rather than see her going through the sheer misery and fear and anger that she lives with now. Either of those options are what I would want for myself - and OH felt the same. Its just all too cruel, to see someone live like that.

    I know that so many others have had to come to terms with these feelings and the anger, and OH and I will (I hope) eventually learn to do the same. Just at the moment, I'm finding it all really hard - so please excuse the ranting and moaning xxxx

    Amy, the vicks that Celia suggests is a good idea - I used to burn an awful lot of scented candles/incense whilst Mil was at DC, and when I was struggling to banish the odours. Can't tell you how many times, after dealing with similar situations in her bedroom/in the bathroom, I would go around 'sniffing' convinced the smells still lingered - a few hours burning the candles/incense sticks usually seemed to help me banish the smells that I was sure I could still detect.

    I totally get the feeling offended, that your Mum in law can't even get your name right - my Mum continually spelled OH's name wrong (his name isn't uncommon but it's spelled the Irish way) even after we had been married over 20 years, and it used to annoy me, as well as him. So though I admit to a giggle, I do understand xxxx

    Slugsta, I think its completely appalling that the paramedics took so long to respond, though I am really glad that your Mum was OK in the end. Enjoy your weekend away - its sounds like you have more than earned it xxxx

    I was absolutely hell bent and determined that I would take a full day off today - but you know what they say about the best laid plans! Went to the college open evening last night to find there had been a complete mess up as regards allocation of tables and who was due to be there. I was passed around and left sitting for so long, whilst various people ran round trying to find someone who knew what was going on, that in the end, I gave up and left. But not before getting the correct contact details for the person I need to speak to, to ensure that I don't face a similar mess at the open day in a 'sister' college I am due to go to tomorrow -its an hour and a half round trip to the sister college and I really don't want a wasted journey and to waste my time again - especially as I am not supposed to work weekends anyway. However, that means that I will have to spend at least a little time today on making work related phone calls - which, much as I love my job, is so annoying!

    I've done nothing about Mil's missing clothes - between work and the school stuff, I've run out of steam. OH says to leave it, that its just not worth the stress - at the moment, I'm inclined to go along with that, even whilst I know I shouldn't. The school issues just keep getting more and more ridiculous - but now the threat of the education ombudsman is out there, I am being assured that this 'matter' will be dealt with - an absolutely infuriating aspect of the whole complaints thing is that I am required to demonstrate that I have given the school every opportunity to deal with this - well, I reckon I have more than done that, this is their very last chance - and I've made that extremely clear to them.

    Sending big thanks to you all for your words of common sense and reassurance (again x) - I hope you all manage to have a peaceful day xxxx
  2. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    Ann, it's 18 months plus since Mum died in the CH, and lately I have been plagued by these same thoughts..." Did I force her into the home" "Could we have managed", " Should I have insisted". Mum, herself, even said at the end that " this place is my home".... but still I wonder sometimes......:confused:

    .... and I do know that we made the right decision.;);)
  3. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    North West
    Amy in the US.

    If you think the smell is just up your nose trying smelling coffee beans. An assistant in a posh perfume store used this method on me and it did clear the last perfume. Hopefully it might work on the opposite of perfume.
  4. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England
    Amy...two sugggestions re the panties a) buy the cheapest you can if they are being thrown out instead of being laundered and b) could you try paper pants..... I noticed them in one supermarket this week on the babies section labelled as Maternity pants and next to the breast pads. Try asking at the Laundry if Mom's nighties have been taken there for laundering when her sheets are changed. I seriously would let them deal with the laundry all the time. Can I just confirm that this is notjust sheltered ( assisted living) housing but an actual care home, because the staff seem to be needing an awful lot of instruction and not using intuition very often.
  5. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    Amy - I do agree with Cragmaid - your terms are different from ours for these things
    in UK assisted living means own flat with carers popping in and a restaurant on site and some activities but not a care home - eg my mum gets her own breakfast etc

    From what you have said I thought your mum was in a care home and had recently moved to the dementia wing? or more support anyway?

    Having said that I pay for a weekly domestic visit and they change her sheets and do her laundry as part of that visit - but just her stuff goes in the machine so no risk of losing it.
  6. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    You all have such good suggestions and I thank you. I did not know about the paper pants and will look into those. I know I need to get them to do the washing, including the nightgowns, you are absolutely right. I think I was so upset I just took it all away yesterday to do myself.

    In US parlance, this is the memory care/dementia unit at a nursing home. It is not like sheltered accommodation as I understand it in the UK. But she has only been in the memory wing for a month and I am still learning how it works. But you are correct that I should hold them to their jobs.

    Part of the issue with the laundry is that my mother doesn't seem to recognize clothes as dirty, and doesn't put things into the wash. On the other unit they apparently didn't question this. In the new unit they are trying to direct her more, but she is very verbal and independent and it's a fine line between direction and her getting upset.

    Hence my plan to go to the care home when she wasn't there and just remove a pile of clothes and sort/wash things myself. But that just makes work for me. Next time I will sort it out and give it to them to wash. I feel anxious typing that, which is ridiculous. I guess I am trying to have control over an uncontrollable situation.

    Ann, I am not offended by your statement. I typed a longer response, but deleted it since I'm typing on my phone and can't consider it properly and don't want to offend anyone. But I hear what you're saying. If I were allowed to choose what disease is going to finish me off, it sure wouldn't be dementia.
  7. RedLou

    RedLou Registered User

    Jul 30, 2014
    I don't think it's you being passive-aggressive, Amy -- it's your MiL. Classic stuff. It's the last thing you need at the moment and all my sympathies - and empathy - are with you.
  8. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Ann, I forgot to say earlier that I am sorry (indeed I am sure we are all sorry) to hear that the school drama is continuing. Neither you nor your daughter need that, at all, and especially not right now. I hope things can get worked out.

    RedLou, thanks for your kind words and reassurances. I just found said card and envelope in the recycling bin. It's an anniversary card. If my note to my poor husband didn't irritate him, the card surely did, as it's religiously themed, and he hates that sort of thing, VERY much. Oh, dear. Probably she means well. She is not a spiteful or unkind person. She's just maddening, for a variety of reasons (the religion thing, no filters, and a weird 1952-esqe world view that wasn't accurate then, let alone now, and is utterly alien to my background and upbringing). My father-in-law provided a lot of balance for her. Heaven help me if she ever gets dementia (her mother had Alzheimer's)!

    RedLou, how are you doing vis-a-vis the brother and your dad's remains and all that mess?
  9. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Trying to find control over an uncontrollable situation........

    That's what we all try to do isn't it

    That's why the guilt monster causes us to do things we wouldn't "normally" accept or do......

    My place on the rollercoaster of dementia has ended...... but still it goes on...... because of the guilt monster..... despite my best efforts...

    I was told, years ago, when I first joined TP from someone who was wise due to experience......

    take a step back. Do Not listen to emotions...... to listen to rational thinking.....

    I guess I'm that wise person now.....

    Take a step back. Think without emotion. Deal with situations without the emotion of the memory of what was.....

    Deal with what is now

    This could cause an acceptance. It did for me during the time of dealing with the new normal....

    Sent from my iPhone using Talking Point
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    Morning all!
    Ann, hope you're having a good lie in!
    Just an update on my fall. I've got a big L shaped bruise on my arm just below the elbow, think I must have fallen on one of my sticks, they're the ones with a shaped hand grip..... then had to go for BP and blood tests ( nothing to do with fall), I had to request right arm please! And the nurse bruised my other arm! I haven't bruised from a needle for so many years I can't remember!
    To add insult to injury, my glasses broke last night! Or at least, I guess the fall broke them, they just came apart last night. So it's a trip to get them mended tomorrow.

    Blood pressure all over the place, got to take it daily for a while. What a bore! However, it suddenly went back to its 'normal' yesterday after being really high (☹️️☹️️) on Friday. Long may it last!

    The sun is shining, the sky is blue, enjoy everybody!
  11. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Oh I am sorry to hear that spamar

    From my fall I'm just left with an ungainly limp... no bruises to show off to gain sympathy, just horrible sharp pain if I turn my body, without moving feet.

    I can walk ok, just not down or up steps easily..... or do any housework ;)

    Hugs xxxx

    Sent from my iPhone using Talking Point
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Spamar, I'm sorry to hear about the bruises and the broken glasses. Hope you're not too sore today.
  13. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Morning everyone,

    Spamar, poor you - it sounds as though you went with one heck of a wallop! I hope firstly, that the aches and pains from the bumps and bruises has eased, and secondly, that your blood pressure is behaving for you. Sending {{{{{{hugs}}}}}} to you, and to 2jays - hoping that the pain has eased for you, and that you have recovered enough to lose the limp - even if you are not quite comfortable enough to tackle the housework yet :) xxxx

    I feel for you and your OH having to deal with your Mum in laws attitudes, Amy. After the loss of Fil, all OH's work related stress and the stress of moving your Mum into the memory unit, I can see just how much her behaviour would be particularly hard to deal with at the moment :( Sending you {{{{{hugs}}}}} too x

    Red, I was also wondering how you had got in with the arrangements for your Dad's ashes - I really hope your brother hasn't caused any more stress and hard work for you xxxx

    2jays - the advice to listen to rational thinking is good, and I do try. I do know that there really wasn't any other option than to go down this route with Mil and residential care. I don't think either OH or I are at the point of acceptance - but we keep talking, keep reassuring each other, I keep listening to all of the Bizarrites and I keep bashing the GM, and I hope acceptance will come soon.

    Its been a mad busy weekend. Saturday, I went to an open day - to do with work - at a college quite a distance away - I was worried it would be a wash out after the open day that I'd gone to at another college earlier in the week, but actually, it was really good - very much a case of worth the effort. We are nearly at the end of our zoo annual pass, (though I've made it very clear that I'd like another one for Christmas this year :D ) so OH, dau and I headed there around lunch time yesterday. A bit cold, but the zoo was quiet and much to our delight, the baby otters were out and so dau and I had a great time with our cameras :)

    On the way home, we went to visit Mil. We thought that by timing the visit for 4.30, half an hour (we presumed) before the evening meal, that if Mil was as bad as she was the other day, the meal being served would help make us leaving easier for her and us. We were a bit surprised to get in there and find Mil already tucking into a large bowl of ice cream as her pudding - it seemed awfully early for them all to be having tea!

    Mil was once again sat apart from everyone else - the main dining area is at the far end of the large 'day' room, but just as you go through the door into the room, there is a table where the staff seem to sit when they are doing paperwork - Mil was sat there. She barely spared us a greeting, she was just so intent on spooning up the ice cream as fast as she could. She didn't speak, didn't respond to us, just scooped up her pud and belted it in, with as much ice cream ending up on her and the floor as made it to her mouth :(

    As she ate, both OH and I saw that her lower right arm was pretty badly bruised, and she had some skin tears there, and it was obvious that they had been caused by someone gripping her arm - they weren't in the right 'place' for her to have been able to have caused them herself, but were still clearly made by a fingers and nails. I'm not suggesting that she is being abused, btw - both OH and I are pretty sure that this would most likely be another incident where Mil has been in an altercation with another resident - and that the chances are that she might well have 'started' whatever the incident was. But we did wonder how much this had to do with her sitting by herself again, and if this is the 'norm' because of her behaviour. There were more bruises on the backs of her hands - and again, from experience, those were probably down to her banging on doors - she has a trick of first knocking, then sort of turning her hands round and using the backs of her hands to bang - we saw it so many times when she was here, and even whilst she was at the hospital.

    There wasn't an opportunity to collar a member of staff and ask quietly - all the staff were 'on the floor' so to speak, and busy with residents and other visitors. Afterwards, OH and I wondered about Mil sitting by herself - not in a 'complaining way', because we can both see that if Mil is being irritated by and aggressive towards others, then giving her a bit of distance is probably best for her - but if that is the case, then its just so sad, as she was always such a sociable lady, pre-dementia.

    Once the ice cream was finally finished, and Mil came up for air, I don't think she really had much of a clue as to who OH and I were - she never once used our names, or said anything that indicated that she was aware of any connection with us. She did, however, greet dau really warmly and got her name right - though again, not sure if she knew who dau is to her. Within about 5 minutes the 'Well - time I was going home' started - nowhere near as agitated as my last visit, but persistent and repetative, with her repeatedly getting up from her seat. Over and over we fed her a long line of distractions and love lies, she would appear to listen, maybe even say OK - and then with the next breath "Right - I'm going now", "Come on, lets go home now", "I'll see you later - I'm going home now". On perhaps 3 separate occasions, as we tried to reassure her and give her a reason why she couldn't go 'yet', she looked at us blankly and said "I don't understand what you mean", before going back into the 'going home' loop. It really seemed that what we were saying just made no sense to her at all - though whether that was her struggling with following a sentence or just not understanding the context of what we were saying within what she believed to be the reality, I don't know. We had a few comments about her going back to school and a couple of references to her Dad giving her money, but mainly it was 'home'. When her eyes started filling with tears, after about 30 minutes, and her remarks about home starting to get a bit tetchy and distressed, we made our excuses and left. She tried to come with us, and again, to be fair, a member of staff was there straight away and managed to distract her.

    I was very, VERY glad that she wasn't as agitated as she was on my previous visit - I hadn't really wanted dau to come with us, just in case, but she was adamant that she wanted to see her Nana, and I think she was really pleased that Nana had seemed so warm with her. But, dau wasn't impressed with the home - she found it sad and I think that the very residential, institutional setting wasn't quite what she had imagined - she said that its 'not like a proper home, is it?' a couple of times. I had to agree that no, it wasn't - but explained that though its perhaps not what she or I would consider a 'nice' environment, because of the dementia, that sort of environment meets Nana's needs better now, than we could in a 'proper home'. Not sure if she was convinced. As she talked about the home - the smell of cooking, all the 'plasticky chairs, all alike', all the people 'just sitting', etc - I could sort of see it in very sharp detail through her eyes. Brought home to me how very different it is from what we would have wished for, for Mil. Again - that's something I am going to have to learn to deal with, sadly.

    Right - time for me to start work - hope you guys all have a good day xxxxx
  14. Slugsta

    Slugsta Registered User


    Ann, I'm very glad that the latest open day went better than the first! It does sound as if you are starting to get to grips with the new job - and really hope you will find that things don't take as long once they have become routine.

    How lovely to see the baby otters! They are such lovely animals, lively and inquisitive, I bet the babies are adorable :) I do hope that your hints to Father Christmas bear fruit and you get another annual pass to the zoo.

    I'm sorry that your visits to MIL have been so difficult. I understand your daughter's concerns, a residential home for PWD is not the kind of place where anyone of us would choose to live. I know your daughter is very fond of her nana and saw a lot of her difficult behaviour. However, it wasn't her who cleaned her up and did the mountains of washing and it wasn't her who bore the brunt of the awful aggression. For this reason, I suspect she thought 'it wasn't that bad'. We know otherwise.

    Don't forget that guilt is a stage of grief. It is natural for anyone in your situation to wonder if there was anything more they could have done - just as we do when someone dies. You know what to do to the GM, don't you?!

    I hope that Spamar and 2Js are now recovered from their injuries. Spamar, I hope you get that BP under control. Mine was up to 220/120 at its worst at the beginning of the year :eek: I went from 1 tablet a day to 4 and it is now nicely managed. The new tablets cause some swelling of the ankles, which makes me feel a bit :( , but that is the worst of it so I can't complain.

    ((( Amy ))) I'm so sorry that you are still getting carp from your MIL :mad: What a nasty way to behave! Actually, my MIL never once spelled my forename correctly in more than 30 years (it's only 3 letters long!). However, I knew that it was not out of malice and that makes a big difference. Happy Anniversary BTW :) How many years have you and Mr A been together?

    Mum doesn't seem to have had any repercussions from her fall, which is a relief.

    We went away for the weekend and had a great time. We have done a murder mystery weekend with this company before and they are very good. We didn't quite work out whodunnit but did well at the other games and quizzes during the weekend.

    My darling husband had a bug at the beginning of the week and kindly gave it to me, so I came home yesterday feeling hot and fluey :( I didn't have any aquagym booked for today and cancelled my morning out with BFF. I also sent hubby round to Mum (she needed some bread) as I don't want to give this to her. I'm feeling better today than yesterday, so I'm hoping this will soon be gone.

    Hubby didn't go over to Mum until this afternoon. He said Mum had been wondering why we hadn't been round to take her out (we don't usually do that on Mondays) which made me sad. Not so long ago she would have been phoning every few minutes to ask why we were not there. Now we don't get that because she can't remember how to use the phone :( I never thought I would be sorry the calls have stopped! :rolleyes:

    We had a text from our son yesterday to say that he was nowhere near the earthquake and was fine. He's up on North Island and says they just felt the edge of the tremors - so he can now say that he has experienced his first earthquake!

    Our house moving plans have come to a bit of a standstill. Although I checked with the EA that cats are allowed, it seems that it is not quite that straightforward. Permission has to be given by the rest of the freeholders (flat owners) first, so the vendors have emailed everyone to ask. They also have to give permission for the cat flap to be put in the outside wall. Fingers crossed!!
  15. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Morning everyone,

    Slugsta, so glad that your Mum is OK after the fall, but sorry to hear that you have picked up a lurgy from your OH. Fingers crossed that it doesn't linger and you are over it soon. I've always fancied doing one of those murder/mystery weekends, but it doesn't appeal to OH at all, sadly - glad you and your OH enjoyed it though :) You must have been relieved to hear from your son too - thank goodness he is OK and missed the worst of the earthquake!

    Its a horrible truth about dementia that as it progresses, behaviours and stages that used to drive you to screaming point with frustration can actually become behaviours and stages that you miss, when your loved one deteriorates and they lose the ability to do the things that once drove you mad :(

    I've also got my fingers crossed about the new flat and Alfie and Sky - really hope there isn't a problem with you taking them!

    Busy couple of days with work - more glitches with delivery companies. I've been chasing after some stuff that was ordered for me weeks ago, and finally have been told that the delivery company tried to deliver it last month! Only I had no failed delivery slip and the house they said they left it with is (a) right at the far end of the street and (b) claim not to have received any package on my behalf anyway :( Although the name given by the delivery company matches, the chap pointed out that all in the house work full time and were in work when its claimed that the parcel was left at their address - so I need to sort that again.

    Other annoying bits to also be tackled today - been brought to a grinding halt by folk who are very keen for me to provide the service for them - but not so keen to sort the paperwork that I need done by them before I can move forward. So frustrating.

    I'm just going to work a half day today - after the extra hours I did last week - and will be going to see Mil this afternoon. Can't say I am looking forward to it, but the dread of seeing her is outweighed by wanting to make sure she is OK and the feeling that if I don't go, it feels like she is being abandoned - yep, I know its daft, but its how I feel and not going will make me more stressed than going, IYKWIM. Just hoping that she is more settled and less upset today - though I'm not holding my breath.

    Hope you all have a good day xxxxx
  16. Slugsta

    Slugsta Registered User


    Ann, I hope that today's visit went well and that MIL was calmer.

    What a PITA about the missing delivery! Don't really see why you have to sort it out - the person who sent the item is the only one who has any sort of contract with the delivery company.

    Hubby and I arrived to take Mum out this morning, as usual. Mum was wandering around with a used (wet) pad in the basket of her rollator :)eek: ) and looking upset. I took her back to the flat and asked what the problem was. Mum said she couldn't get the pad to stay in place - that would be because she uses pull-ups now and I removed her knickers (but left the pads there cos she seemed happier that way).

    It appeared that Mum had no pull-ups left. This morning's carer had written that Mum had no underwear - but rather than phoning me had simply gone away :mad:

    I managed to find a pair of pull-ups in my 'emergency' bag and got Mum dressed, first stop was to get a good supply of pull-ups, including a pack to keep in the warden's office in case of emergencies. When hubby was writing up the shopping list he found an almost full pack of pull-ups in one of the kitchen cupboards! :confused:

    When I spoke to the wardens they were in the middle of doing their own referral for Mum to SS. They really don't believe that this is the right place for her anymore - certainly not without a lot more SS input and possibly not even then. I really don't know where we will stand if the HA's Housing Officer asks Mum to leave but SS don't believe she is ready for a CH? We do have an Extra Care scheme quite nearby but I don't think it would suit Mum for long, surely moving her twice in quick succession would not be good for her either?

    At least Mum enjoyed her hot choccy and cake and was happier when we left her - despite no longer knowing which day of the week it is, that Thursday follows Wednesday or that she goes to DC on Thursdays :(
  17. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Slugsta, how on earth do the carers expect you to do anything about a situation (like no underwear), if they don't TELL you? Surely they could phone or text or email or something??? I haven't dealt with carers so don't know the answer to this one but surely it's common sense. Thank goodness you were able to sort it out. Your poor mum.

    I am not sure I understand the distinctions between Extra Care, and where your mum is now. I agree that two moves in quick succession is not a good idea for her (or you), if it can be helped.

    This isn't at all the same thing, but my mother goes through toilet paper at an amazingly quick rate. Of course the care home supplies toilet paper, but my mother prefers a different brand, so we keep her supplied. Every time we would go to the care home, I would suggest we take more toilet paper. OH would say, no, we just took her some last week, she'll be fine. Then we would get to the care home and there would be no toilet paper. :rolleyes: It didn't take long for OH to agree to always keep a package of toilet paper in the boot/trunk of the car. The point is, how about keeping a pack or two of pull-ups in your car, to lessen the chance of having to make an emergency shopping trip for them?

    Any progress on cat flaps and moving and so forth?

    Ann, hope you can sort whatever needs sorting and that your visit to MIL was okay today.

    Sending good wishes to you all.
  18. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    #6458 Ann Mac, Nov 17, 2016
    Last edited: Nov 17, 2016
    Morning all,

    Slugsta, hope you are over the lurgy now, hun? How ridiculous that the carer didn't contact you about your Mum having no pull ups! Typical though, of poor communication, which seems to be an issue with just about every single 'support' service that we have to deal with :rolleyes: Everytime we visit Mil, I make a point of asking about toiletries and so on, and stress each time that if she is running low on anything, all they have to do is phone us, that we won't mind, that we don't want her to be without anything she needs. Whether or not they actually will - well, we will see.

    Worrying for you that the sheltered housing think your Mum needs more support than they can offer now. There is absolutely no sense in a move to somewhere that she could only stay short term, so if moving is what becomes necessary, I hope that SS for once, take a common sense approach.

    Any news on your move yet?

    Amy, keeping a suply of things like that in the car is a great idea! You know what, I am going to go and buy a selection of toiletries for Mil and keep them in the boot of our car - that way if we ever do walk in there and Mil needs something urgently, we'll have it to hand! Though, the home actually do keep a supply of shampoo's and showergels and so on to hand, and tell me that they allow for the provision of toiletries in the costs - which is something I've never come across with a home before!

    Despite the plan to only work a half day yesterday, I managed to find enough to do that in the end, I finished just an hour earlier than usual. However, it was a productive day, so worth it. I headed off to see Mil just after 2pm, and once again, found her sat by herself by the area where the staff tend to sit to do their paperwork. When I went in, it took her several moments to realise who I was - or at least, she then remembered my name - once again, not sure if she had any idea what our connection is. She had had her hair cut and her nails painted, which I felt was positive - of course, when I complimented her, she was certain that her 'friend' had styled her hair for her (telling me that she hadn't had it cut for 'months') and that she had done her own nails, but she was clearly pleased with the admiration, so that was good.

    But then she rolled up her right sleeve to show me the skin tears that we had seen on the last visit, and started telling me that they had been made when 'she cut me with the knife'. I tried to distract, and rolled her sleeve back down, starting to rabbit on to her about her 'lovely nails' - she then rolled up her left sleeve and I saw that she now also has 2 or 3 really nasty looking gouges on that arm too, along with a large area of bruising :( I did manage to ask a member of staff how she had acquired the tears. She said she didn't know, but suggested I stop at the office and ask on my way out. She also added that Mil spends a lot of time banging on the doors, walls, tables, windows - and that the bruising at least was probably as a result of that.

    I'd taken in a 'peoples friend' magazine for Mil - its one of the few womens magazines that dosn't contain lurid 'real life' stories - and it had a feature on Dublin in it, so I tried to engage Mil in looking at that with me. But, she suddenly spotted a lady at the far end of the room, a visitor, and became certain that it was 'Betty Maloney' (?) and was determined to go and talk to her. When she asked a member of staff to confirm that it was 'Betty' and the staff explained (really nicely) that no, that was 'Cath', Mil very rudely turned to me and told me the staff was stupid because it was 'Betty'. However - quite a shocker - Mil couldn't get up out of the chair to go to the woman - she couldn't seem to find the balance or strength needed to actually get up. Thats the second time I've seen that happen with her since she has been in the home - its a sudden and quite big downturn. I again asked a member of staff - yes, they had noticed that happening, but she added that when Mil is 'agitated', she has no problems with mobility at all, and in fact is often up and almost running, leaving her frame behind most of the time.

    Mil was clearly getting a bit tetchy, and a couple of staff came over, including the senior staff, and joined in with me chatting to Mil - full marks, they really do seem on the ball there, each time Mil has got agitated when I've been, staff have been very quick to either place themselves near by or to actually intervene to help distract and calm her. Mil calmed down, slumped back in her seat and sort of zoned out. Talking qietly, the senior staff asked me to clarify who some of the people Mil had been talking about were. She had given them, at various times, the names of both OH, and her B.I.L. as her husband - neither even remotely like Fil's actual name. She was consitant in naming and identifying one of her brothers correctly, but was persisting in using her maiden name to identify herself. I was a bit irked, because the 'This is me' info that I had emailed in had obviously not made it through to the staff. I think that perhaps I need to put together that info, with pics if they can be tracked down, into a book/album, to be left in her room.

    It was also suggested that we bring in her TV - we haven't done so, so far, because of Mil's current trick of throwing things in temper - not so much the TV itself, but we figured the remote control could do some damage if lobbed at a person or a window. However, the staff now feel that she would benefit from being able to spend some time in her room, watching TV or DVD's in peace. They agreed that they would take charge of the remote to prevent it being lost - or to stop Mil using it as a missile! We'll also get a bracket to wall mount the telly - just incase Mil progresses to trying to throw bigger objects!

    Then 'Home' started. I gave it another 10 minutes, but the agitation grew very quickly, so with the help of the staff, I made my escape. One staff commented that Mil had done well - that she isn't often 'calm' for as long as she had been during the visit. I stopped and asked about the skin tears on my way out, and the manager said that Mil is actually doing it to herself, very deliberately, in temper! That's completely new, but the manager said that she had sadly seen it before in dementia patients, and that they were 'monitoring' it. She reminded me that it was very early days for Mil, that it might actually be months, rather than weeks, before she is more settled. I know she is right, but the thought of Mil being so distressed that she is basically self harming is really, really horrible :(

    I've edited this to ask if any of you guys have come across this sort of self-injury in association with dementia - I'm wracking my brain, but I've never heard of this being an issue before and it is worrying me. I don't think that Mil is being mistreated, BTW - although the marks are not where I would expect them to be from Mil grabbing herself and digging nails in, when I've thought about it, it actually would be physically possible for her to do them (although it would be an awkward way for her to grip herself and dig her nails in), and the fact that the home are aware of the marks and monitoring this happening suggests to me that it is certain that Mil doing this to herself :(

    OH and I have decided that we will use some of Mil's money to buy her a TV with built in DVD, and also get a selection of films that we think she will be able to watch without them causing her scary delusions - musicals and Disney's are fairly safe. We'll take that in for her on Friday, and I'll add more films to her Christmas present list too. I hope that she is able to enjoy them and it helps to calm her when she is so upset.

    Right - better get moving and get youngest up for school.

    Hope you all have a good day xxxxx
  19. RedLou

    RedLou Registered User

    Jul 30, 2014
    Just very quickly - there are some posts on here and some scholarly articles on dementia and self-harm, Ann.
    Hope you all okay. Think I'm on the home straight with getting arrangements sorted. Been quite stressful. In the interim, we took in a baby hedgehog that was so tiny it wasn't going to survive the winter, but now it has escaped and we think is under the floor boards! Trying to coax it out with delicious hedgehog food but so far, no luck. :confused:
  20. Margi29

    Margi29 Registered User

    Oct 31, 2016
    Hi Ann

    I am steadily reading through various posts / threads and have to say I have just come across this.

    I am caring for mum at present with this awful disease.

    But the above is a total description of my MIL as a normal person to me !! God help me when she maybe gets this ?? Showing signs ( early at mo ) or maybe she will become a sweet old lady lol

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