1. Expert Q&A: Living well as a carer - Weds 28 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 Wednesday 28 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. Grace L

    Grace L Registered User

    Jun 14, 2014
    647
    NW UK
    #5921 Grace L, Aug 15, 2016
    Last edited: Aug 15, 2016
    Mornin'

    AnnM, sorry you are feeling down. Hope the Doctor can suggest something useful.
    You have been through so much these last few years as have the family ,
    it will take a few months to adjust to your new lives.

    When my husband was in for assessment (coming back home , not going into care), I also had bad treatment from some of the assessment nursing staff, if I said I was having a day off from visiting.
    One of them took me to one side and asked (told) me to come in every day and shower my husband.
    "Look, you may as well get used to it, you are going to have to do this when he comes home!" .
    She told me they did not have time to help wash/ shower patients every day.
    She was a Senior staff nurse on that ward, and the nursing assistants hated being on shift with her
    if she was in charge. She did no hands on work as she was busy with paperwork.


    Yes, operation still on as long as they don't cancel on me.
    Getting hair cut this week, then extra shopping being delivered too.
    One of the hardest things I will find ... is not to be bothered about cleaning / tidying.
    I'm not OCD, just extra tidy, and can always find things to do. Doing nothing will be hard.

    As I live in a flat I wont have to worry about gardening. Gardener does the bins too.
    He's here 3 x a week and said he will pop in and see if I need anything.
    Getting a bit anxious, not sleeping... worrying a little bit. Not many 'sleeps' to go.
    At least I wont be getting it done over Winter, snow on the ground, extra slippy.


    Saw MiL at the weekend, and I think my next visit will be my last before surgery.
    Her cupboards, and her garage are well stocked with dry groceries and other things.
    If you remember I organised shelves/ boxes earlier this year in her garage.
    I've given my Niece money, and she is going to call in and see Granny with groceries.
    Her Mum should be doing this, but as she is still avoiding her Mum (Unless of course she wants something!) .

    Oh yeah, didn't tell you ..... SiL has been over to see her mum and ask to borrow money.
    Only found out as niece told me. SiL wants a new car (second hand), we are not talking pennies.
    I'm still PO !!! (sorry for swearing).
    Nieces said her mum said ..."Well, (the money), its going to be mine someday anyways" .
    MiL not rich , cannot afford 'loans'. Nor do I want MiL borrowing money !!

    Hope you all have a good day, I'm still 'here' not in hospital yet .

    Take care xxx
     
  2. Bagpuss77j

    Bagpuss77j Registered User

    Nov 5, 2015
    30
    Wirral
    #5922 Bagpuss77j, Aug 15, 2016
    Last edited: Aug 15, 2016
    Any advice please

    Mum is doubly incontinent and although its been really hard for me to come to terms with taking care of her Toiletry needs because I have such a terrible weak stomach I have got my head round it and got Into a routine of sorts, anyway things have changed over past 2 weeks and instead of poohing every other day it is constant sorry to be blunt but it is nor diarrhoea it is semi solid but constantly coming out and it is getting so hard to manage!
    Sorry meant to post this as a new thread
     
  3. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    JM, I'd like to blame the Olympics as well! (Not my fault I have to stay up late and watch, is it?)

    All of your posts are so encouraging and helpful. Thank you all.

    I will take Red at her word and ramble on at length. Thank you all again.

    Red, while you really have no obligation to be here (given that you need some distance and all that) I do want to say how grateful I am to have your perspective. Again, no obligation, and don't think I want to contribute to you feeling that way!

    "Down," "spent," and "running on empty" exactly describe how I'm feeling. Perfectly. Scarily accurate, in fact. So it is reassuring to hear that others have been through this (as it is reassuring about all other facets of this dementia journey).

    I love to travel and in the past, having holidays (of the vacation sort) planned has been something that has helped me inordinately. Because of the uncertainty of FIL's cancer, I had not planned any trips for 2016 so I don't have one to look forward to, but will work to remedy that as soon as possible.

    All your advice and comments about the holidays (of the Thanksgiving and Christmas sort; the differences in American and British English are often subtle and confusing!) is gratefully accepted and understood. The first hurdle was discussing the subject with DH at all. As tired and drained and upset as I am, it's his father who died, and he is worse off than I am, given the stresses of his job right now (most unhelpful). I delicately broached the topic last night, at a handy conversational opening, and while we made few decisions, it got us started. The next holiday here is Labor Day, which is sort of a Bank Holiday three-day-weekend thing in early September, so not very far off. Usually we go to my aunt and uncle's house (whom I visited last week) but they, conveniently, are doing work on the house (bathroom reno) and don't want guests. So we will either go down just for a day or they will come here or maybe DH and I will sit on the sofa for three days, but whatever we do, it will be low-key. So first hurdle cleared easily.

    I am trying to make plans with some good friends for Thanksgiving, but in case it doesn't work out, haven't said anything to DH. Said friends would look after us and any cooking or work we would do, would be pleasant. We've not seen them in over a year so it would be great regardless, and it would involve going out of town either to their nice house or their holiday home. I don't have a Plan B yet, but will work on it.

    I do not wish to go to my MIL's for Thanksgiving, no matter what. I think I told you all this, but for either two or three years running, we ended up driving to DH's parents' house, unplanned and at the last minute, for Thanksgiving. One year, we took the turkey and ingredients, and then cooked the meal ourselves. (Yes, we drove a turkey 450 miles and then cooked it. Insanity! Madness!! Never again!!!) So I'd quite like to avoid going there, for a variety of reasons.

    Not only am I still upset with MIL, but I think that FIL not being there would be just too painful--salt in the wounds. (That was how I felt after my father's death--the first year I didn't want any holidays the way they normally would be, and spent Thanksgiving in Montreal, where it wasn't Thanksgiving, and Christmas Day, in California.) And I know if I wait, I will end up driving a turkey and cooking it again. Hence trying to cook up a plan with friends instead.

    It's harder to think about Christmas. It's also hard because I don't know what to do about my mother. I know I just have to wait and see what my instincts are, closer to Christmas, but that's challenging with wanting to head off the in-laws. This is where I take a deep breath and say to myself, it will all work out.

    Ann, I did want to say to you, that I think you are right not to try to bring MIL to your house for Christmas Day, as difficult as it may seem now/feel then. Your instincts are good and it would likely only be confusing for MIL, which would (no matter how hard you tried or what contingency plans you made) only be upsetting for you and your family. A visit to her in the morning of Christmas Day sounds very reasonable. That way you can stay and visit if it is working for her, and leave if it isn't. I know it's easy to say and hard to do, but if you can keep your expectations low, it could possibly help just a bit. I know my mother was more confused than pleased by her presents and Christmas stocking last year and for some reason, that was more upsetting to me than anything else (perhaps because "presents" were always so important to her, or because it was a visible reminder that Christmas with her won't ever be the way it was before). I imagine this sort of thing is true for many of us.

    Ann, also glad the cold has gone.

    I don't know what your GP can or cannot do, Ann, but it cannot hurt for you to go. I know I've neglected my own health for the past several years, while dealing with my mother got worse and worse, and am only now moving to remedy that. Certainly you've had your struggles in that arena and perhaps the GP can suggest something. If nothing else, a friendly professional ear may be helpful, who knows?

    Maybe we ALL need a nice holiday by the seaside somewhere. Wouldn't that be something?

    Grace, hope all continues to go as well as possible and please do look after yourself. We are all sending good wishes for your op and your recovery. Keep us updated when you can, we are all thinking of you.

    Red, I didn't address the "forward plan" part of your post but I have been thinking about that and will continue to do so, I promise.

    You are all so amazing and supportive and helpful and I do thank you. I would go quite mad without TP, I am sure. Warm wishes to you all and here's a cheer for Team GB!!
     
  4. Slugsta

    Slugsta Registered User

    Hi all,

    Spamar, I am so glad that you were able to get to - and enjoy - another concert :)

    JM, well done for getting your two offspring packed off to different places before work.

    RedLou, thank you for your input and perspective. I will try and remember some of your sage words when the time comes.

    Grace, I am very glad that it is 'All systems are go' for your op. I would like to pick up on one point - you said that you gave your niece some money to get things for MIL. I trust you are getting that back??

    Amy and Ann, I can only echo what has been said - when we have to keep going, we do so until we absolutely can take no more. When the pressure is released everything seems to fall apart, simply because it can! Things will improve but it could take a while and you do need to be patient with yourselves. Meanwhile, there is no harm in seeing the GP and getting a general check-over. No point in suffering if there is something easily fixable!

    Ann, I read quite a lot on TP around last Christmas. I saw people who had taken their POWs out of their residential home on Christmas Day - and most of them came back and said it had been a mistake, something they would not repeat . . .

    The staff where Mum lives managed to catch up with the SW on the phone. SW says that they still can't find anyone to provide care for Mum and she is now considering 'respite' for her. Respite from what? Mum has not had a recent injury/illness that needs convalescence, she does not need intensive physio to get her back on her feet and she is not so dependent on me that she would need care if I was away (which I will not be). Furthermore, the situation at home would still be exactly the same when she returned there. She doesn't need respite, she needs a care package! :mad: She hasn't spoken to me about it but I know the staff share my view.

    Other news is that Sky and Alf are tolerating each other. Sky is currently asleep on the bottom of our bed, Alfie is out 'untin'.
     
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Slugsta, I think feline tolerance is a pretty good place to be. Perhaps, with time, it will be a warmer relationship...or not.

    I do not understand the difficulties you are having with your mother's care. That is to say, I understand your explanations but just can't comprehend why she cannot get a care package. I have no idea what options you might have for help, although others here will know, but clearly something needs to happen.

    I'm so sorry; it must be very frustrating and stressful.
     
  6. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,030
    Female
    Chester
    Feline news in this house is that our little cat slept on our bed last night, she always has been timid and runs away when we first get home from holiday, still ran away as I put food down tonight. Our cats normally feed in a manner to Katrine so big greedy cat is currently stuffing his face. He lost a lot of weight whilst we were away - dried food was always down - and spent a whole day miaowing at us for being back and is still following us round. Our cats are litter mates and 11 now. Glad yours are tolerating each other Slugsta - it sounds like you have done well.

    Amy - it will take time to get over the summers events, your brain needs to process them all. The US seems to make more of all its bank holidays than we do, with only Christmas being big here.

    Grace - you sound extremely well prepared and organised, think I need some organisation skills here - or just more time.

    Ann - I am so so pleased you have got job, I was following with no time to post for first week and then in second week there was no data signal.

    Amy - I did a fist pump on the train when I saw Steve Cummings had got selected for Olympics, and everyone looked at me - so us Brits can be loud, they then wanted to share in my good news. Commuter trains are very friendly on Merseyside.

    So a few snippets of holiday, lots of driving, over 500 miles at end of week one to get to week 2, down after I'd ridden 95 miles that day, OH had everything packed we got away, stopped for tea after a couple of hours and then I managed to drive 10.30pm until 1.30 am before we stopped to sleep, woke up at 8ish and drove an hour for breakfast and to campsite, quick drop of of bikes and back to French market and supermarket as all close up at lunch time on Sunday in France. Kids bed not built fully yet but they manage on floor with mats when we are travelling and in tent on campsite.

    First week is a cycling festival, moves round France each year, Dijon this year, about 11,000 signed up to event, most are cyclists, but some are wives and kids who don't cycle. Different signed routes each day so see a variety of countryside - route choices are 35ish miles up to over 100 miles each day.

    Bed now - more tomorrow.
     
  7. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Hi everyone,

    Red, as Amy has said, I'm another Bizarrite that appreciates your perspective on things - so thank you for still popping in xxxx The holiday is a no-go, I'm afraid - the last 3 years of my being unable to earn very much has wiped out any savings, and especially the last few weeks or so, when even the paltry carer's allowance has now stopped, has made things like a 'proper' holiday an impossibility for the foreseeable future - we have said that if we can get straight, perhaps this time next year we will look at a week away somewhere. But for now, the best we can do is odd weekends away in Old Red - and I do enjoy those, so I am not moaning x

    Bagpuss77j - I saw that you had edited to say you had posted here in error, but I just wanted to send you {{{{{{hugs}}}}} - coping with incontinence is an awfully hard thing to do, and something a lot of carers are totally unprepared for. Many posts I've seen on TP are from carers who have found incontinece to be the last straw and something that they have found impossible to deal with, so please don't think you are alone in struggling with that aspect of care. I had done care work for years, and to a large extent was able to take it in my stride - however, there were times, when Mil had a tummy upset for example, where I also found it pushed me to my limits too. I really hope that you have the support of a decent continence service - you need to talk to someone in that field to find out if there are any pads/pull ups that they can provide that might help with the issue. And of course, speak to your Mum's GP, because constant 'pooing' needs to be checked out medically, in case there is a reason for it that can be treated. I really hope you can get some help with this, and soon xxxxx

    Grace, I'll echo Slugsta's comment and say I hope you are getting reimbursed for the shopping money for Mil? Once again, your Sil's sheer cheek and 'me, me, me' attitude leaves me gobsmacked! I too hope that your Mil hasn't coughed up cash she can ill-afford - but I also want to say that if she does, then Hun - it isn't your problem to solve! At the moment especially, you really need to be concentrating just on getting yourself through the op, and your recovery xxxx

    Annbythesea - thanks - I haven't heard of that book, but will check to see if I can get it on my kindle, or find a hard copy I can order on-line xxx

    Slugsta, I am totally disgusted (but somehow, not surprised) at the situation with your Mum's care package. Utterly, totally wrong :mad: Like you, I honestly don't see how 'respite' would help. Its at this point, in your circumstances, that with a sinking heart (and if I could summon up the energy) I would be starting to make an awful lot of noise, going over the SW's head, to councillors, to MP's, even the press, basically kicking up a lot of fuss. Here, I know that SS offer contracts to a few specific agencies, tending to stick with one agency for 'Social care', and another for 'home care', for example. When I had some major concerns about an agency that supported Mil for a short while, I got told that if I 'refused' to have them provide care, then there wasn't anyone else - which basically meant that they had tied themselves in to using just the one agency, because I know that there are dozens and dozens operating in this area. I approached it that they had a 'duty of care' to give contracts to an agency that could adequately meet the needs of the service users in the area, and that if the agency they had chosen couldn't, then they had an obligation to sort it out - asap. In our case, a change in DC provision wiped out the need for the agency anyway - but not before I had got them at least agreeing to look at getting another agency on their books. Glad the kitty's are at least tolerating each other - fingers crossed that they move onto being 'friends' - but if not, at least there is no all out war and things are peaceful :)

    JM - that sounds like an incredibly 'hectic' holiday! Lol - you must have come back more exhausted than before you went - though, its obvious you enjoyed it too, and that probably wipes out any tiredness :D

    I'm with you on the 'running on empty', Amy. That's a pretty accurate way of describing some of how I feel - I've said a few times lately that tackling even just the basics around the house makes me feel as though I'm 'wading through treacle' - so much more effort needed than usual to just get through and do even the routine, every day 'jobs' that I used to fly through. And feeling totally useless and negative - constantly wondering how I am going to manage to carry out this new job, when even tackling the ironing is currently taking a herculean effort. And all I can focus on is going over and over the last 3 years, constantly questioning what I did and if I did right, regretting some of what I did (or didn't) do, feeling both bitter and angry at times - when I should be focusing on the future and getting my head wrapped around starting this new chapter. Even though Mil isn't living here now, she and her care is still the main thing I think about, it still feels like its dominating eveything, still my main topic of converation when I chat with my mates - I wonder if I have anything left to offer, to contribute, when so much of me is still caught up in the last 3 years and in thinking about what happens to her now? I need to move on, and don't know how, I guess. The GP appointment has been made for tomorrow - not exactly sure what I should say to him or how to explain how I feel, never mind what he could possibly do to help even if I can make sense when I go - it seems mad that I should feel so 'bleurgh' only now that the 24/7 care is actually over :(

    I've read a lot of the same posts as you, Slugsta, about family bringing their L.O.'s home for Christmas - I saw it worked for some, but not for a lot of others. I guess its us, as carer's, that have to get our heads round accepting that doing what seems to be the 'proper' and 'kind' and 'right' thing actually may not be the 'best' thing for our L.O's. Even with the evidence right in front of me, even when Mil's behaviour shows clearly that she has had enough, that she just can't cope with prolonged visits at the moment, I still feel awfully guilty when we leave after just 30 minutes, sometimes less. On one level, having decided already that we won't be attempting to bring Mil 'home' for Christmas day seems almost cruel and even selfish. On the other, we all know with 100% certainty, that bringing her here will cause her anxiety and stress, probably confuse her and make her unhappy, will impact on her behaviour and will also make Christmas day not very nice for the rest of us. Writing it down makes sense - thinking about it is not so clear cut!

    Didn't go to see Mil yesterday - hadn't slept at all well on Sunday night, and yesterday afternoon I felt so drained that I headed to bed for 3 hours. OH was supposed to go visit her whilst I was sleeping - but didn't 'feel up to it'. Not pleased, because now I feel that I must go today, if only to sort any laundry - and I'll have to fit it in around the shock wave therapy, which left me very uncomfortable last week and I dread the thought of walking from one end of the hospital to the other, in order to fit in both the treatment and a visit to Mil. Youngest is off to her big sisters for the weekend, and OH has announced that it would be 'lovely' if just he and I go off in Old Red for a couple of nights too - and it would be, but that means (to me) that one of us at least should really visit as much as possible this week, if we are not going to see Mil at the weekend. He is on a run of 3 shifts from this evening, so I know he won't be able to go - which means I'll have to do it. And again, its not that I don't want to see her - I actually feel better on the days when I do visit, in an odd way - but its just that even the current half hour visits really throw out the rest of the day.

    I'm going to put in another hour on the wedding editing now, then shower, a bit of housework, then off for my appointment and Mils visit (hopefully - there is a good chance that even if I get to the hospital an hour or so early, I may not find a parking space - seeing and hearing an increasing numeber of complaints about people being unable to attend appointments or visit simply because ther eis nowhere to park!). Then back here, sort tea, try and tackle the ironing mountain!

    Take care all, and hope you have a good day xxxx
     
  8. angelface

    angelface Registered User

    Oct 8, 2011
    1,086
    london
    Sorry you are feeling so low Ann. After what you have been through in the last few years,I think you really need to cut yourself some slack.

    I know it sounds old fashioned,but could you manage a tonic from the health store? I expect you already have a good diet, but extra vitamins as well might help.

    Could you bear to drop your standards on the house work so you get more rest.

    When you go to the gp,I suspect he will offer valium or simular . Could you opt for sleeping pills and counselling instead?

    Hope you dont mind the advice,just that after every you have done for mil, you have my greatest admiration. Wish I could do something to help.
    Gill x
     
  9. Slugsta

    Slugsta Registered User

    Hi all,

    JM, your holiday sounds utterly exhausting - but it is clear that you enjoyed it very much.

    Hi to bagpuss and dad's carer. You will find a wealth of help and support on this site in general, and this thread in particular.

    Ann, I would be utterly disgusted if your GP offered you valium (as angelface suggested)! He might well suggest blood tests for anaemia, thyroid and diabetes, all of which can cause low mood and fatigue. As I said earlier, there's no point in suffering if you don't have to! It's likely that everything will be OK but wise to make sure.

    It's such a shame that finances mean you can't get someone to do the housework, ironing etc. Do you shop on-line? Many delivery slots start at just £1 - and I gain that by not picking up things on impulse like I do in store!

    I think you need to work through the feelings of anger, resentment, guilt etc. I'm sure they will retreat in time. Hopefully, having the job to keep you occupied will be a help. You can do this, you are a strong, capable, intelligent lady!

    Today I had an email from the SW. As expected, saying that she cannot find carers and suggesting 'respite'. Although she also goes on to say that she has not discussed this with her manager who might take some persuading! I phoned the AS line and they suggested I try some local agencies and then contact SW to say 'I have found this, why couldn't you?'. We were offered Direct Payments but I feel that agreeing to this would take this problem from SS and give it to me!

    Due to all the extra washing, I ironed 8 tops for Mum today plus 1 sheet (I don't routinely iron sheets but this one did need doing. It might not have if hubby hadn't screwed it up in the basket when he took it off the line :mad: ). Oh - and a hanky as the iron was hot anyway. After that, I couldn't do my own things. I either need to get Mum more non-iron summer tops, or pay someone to do the ironing as I cannot/will not maintain this due to my own problems :(
     
  10. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    For Slugsta, Ann, and anyone else who has a pile of ironing to face: if you can tell me to forget about the in-law for the holidays, then I can definitely tell you to forget about the ironing!

    Seriously, though, Slugsta, I think more non-iron tops for your mum are a very good idea, or just hire it done. There are so many things about being a carer that demand time and energy, and often things that only the carer/family member/PoA is/are able to do (because of legal requirements or whatever). But washing and ironing don't require a PoA.

    I admit that when my mother moved into the care home, I did not take her any items of clothing that would require ironing, dry cleaning, or other special care (with the exception of her winter coat and gloves). I felt terrible not taking her, her favourite winter cashmere jumpers, but knew they would get destroyed if they went into the wash at the care home, and that would upset her. Mercifully she seems to have forgotten about them. Since you're in charge of the laundry, do what makes it easier for you.

    Having said that, I do want to say that over and over and over people tell me to be kind to myself, or to take care of myself, and often I want to shout at them, I would if I could, but I can't.

    So feel free to tell me where to stick my advice about the ironing! :D
     
  11. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,918
    Suffolk
    I rarely iron, even now. My cleaner does sheets ( I lo o o v e freshly ironed sheets, in my dream world, I'm like the Queen, fresh clean, ironed sheets every night!!).
    I simply cannot manage to handle sheets, too big, too heavy. Clothes are OK, but not too many!!!
     
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
     
  13. Slugsta

    Slugsta Registered User

    I agree about the sheets - the idea of sleeping on freshly laundered and ironed sheets every night is heaven. I don't know if that is what the Queen does, she is very thrifty in some ways. I wonder if anyone really knows?

    I got caught with Mum's things this week. It is 'very hot' here by our standards and I want her to be comfortable. She has clothes packed into her wardrobe, in a chest of drawers and also filling the airing cupboard - which is interesting as she has never been interested in clothes or fashion! I need to try and have a look to see what she has got. In normal weeks it won't be so hot and, I hope, I won't have to deal with so many bloodstained things. The microfibre sheets I bought wash and dry very well without needing ironing, it is a cotton undersheet that I felt I needed to iron. I'm going to buy some 'kylie lookalikes' to try and protect the bed from both blood and worse in future :eek:

    I have emailed a few local care agencies and asked about availability for the times Mum will need. Then, if they come up with anything, I can pass these onto SS. I want to see Mum's GP soon too and will ask if there is anything he can do to help.

    Amy, I have seen your posts in various places in the forum and am always impressed with your helpful and kind messages (((hugs))) :)
     
  14. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Slugsta, stop, I am blushing. So many people have been so kind to me, along this horrid journey, that I just want to do what I can. And right now it seems this is all I have energy for.

    To be honest, I am also procrastinating the dreaded paperwork (I considered other adjectives and discarded them). It's not that I don't know what to do, it's not that I am not capable, I simply don't want to do it. (And the places that don't answer their phones and require me to send them all sorts of extra stuff don't help.)

    Yes, I do hope the bloodstained clothing is a one-off for you.

    It's interesting what you say about the clothes. Pre-dementia, my mother was quite interested in fashion and clothing, and she was also not a person who was organised or interested in clearing things out. Having said that, when I cleared her home last year, I was really shocked at the amount of clothing that had accumulated, and also the way she had been storing it. I found clothes in the cupboard in the spare room dating back to the 1980s; she had clearly just moved those from the prior two houses and never sorted them and not touched them since. Fair enough (I hate to tell you about the state of my spare room closet, no space for guests' things).

    But what was odd, and I'm sure this was part of the dementia, was that she had clearly been buying all sorts of clothes for years, and most of them were piled up all over her condo. Piles on the sofa, piles on the chairs, and piles on every surface in the bedroom. I think it has something to do with her not being able to "see" things, unless they are in the open. Certainly she only ever wore about the same five tops, so they weren't clothes she was wearing, just...that she had?

    She did the same thing with certain snack foods and, oddly enough, hair styling products. Oh, and boxes and boxes and BOXES of facial tissue/Kleenex.

    When we moved her into the care home, I took her plenty of clothes, but she kept asking for more and more, so I kept bringing her more and more, until she stopped asking. Her closet there is generous, but stuffed full. :rolleyes:

    She did the same thing with snack food items, kept asking for more until we finally filled an entire shelf of a bookcase with junk.

    I'm only mentioning this because there seems to be some sort of minimum threshold of "stuff," that my mother needs to feel comfortable, and I wonder if that could be the case for your mother as well. Certainly sort through it and make some items "disappear," if need be, but perhaps do this where she can't see you. My mother gets upset if I try to clear things out of her room, but if we go in and do it when she's not there, it doesn't seem to matter. Of course, she has no short-term memory so I doubt she'd notice anything was missing, but you never know. She was quick enough to notice missing glasses and dentures, but that might be different.

    Good for you for calling the care agencies. I am still baffled by their (lack of helpful) response to you. Please keep us posted.

    Ann, I was mulling over a response to you. While I don't know if there is anything the GP can do to help, it still seems reasonable to get checked over. I must say that although she couldn't do anything to help in a practical way about my mother, my doctor was incredibly sympathetic, and somehow that really helped. I felt like she was the first (official) person who listened when I said that I was not okay, and it was incredibly validating. So I hope that somehow, it's helpful for you.

    I really need to either tackle some paperwork on my desk, or go trudge through some treacly housework/chores/errands. Not appealing options!

    As always, thanks for listening.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    Ann Im so sorry that you are feeling so "bleugh", but Im not surprised - you have been through so much. Quite a lot of the things you describe - especially the bit about everything going round your mind, questioning whether you did the right thing, regretting things that you had done and feeling angry and bitter - sound very much like a form of bereavement. Would it help if you thought of it in that light?
     
  16. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    #5936 Rageddy Anne, Aug 16, 2016
    Last edited: Aug 16, 2016
    That's one fantasy you can't just " go along with". When my husband was fantasising about other people stealing things I found it best to ignore those accusations, and a bit later start on some thread of my own, involving the heroic efforts the " criminal" was making to find the real culprit! If I persevered enough, my husband would eventually be going along with my version...." How nice of Simon to try and find out who's taken your model railway trains.He's trying really hard" etc etc." Tomorrow he's going to ask at the police station in case any have been found" "he's really cross to think anyone would take anything of yours" etc etc.

    Perhaps that would help, I don't know.
     
  17. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    An mac, so sorry your're getting those awful feelings of fatigue, not really surprising after your heroic time of caring for your challenging MIL's unusually challenging dementia. The Olympics aren't just sporting.....you've been running one long caring marathon! I hope you can get some proper rest.

    When I asked my GP why I was still so tired six weeks after my husband went for respite, he said I would feel more tired before I eventually started to feel better. It's been a very long time, he said. You mustn't expect to feel better in a short time.
     
  18. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,030
    Female
    Chester
    Still trying to get round to posting all my updates, Jason Kenny's fault I didn't get on last night.

    Just wanted to post I am going to a funeral today of a dementia sufferer. He had a serious bike accident over 20 years ago fracturing his spinal cord, and losing the use of his legs, and only partial use of his arms so has been wheelchair bound since then. He was on his way to work at the time of the accident, due to take early retirement at the end of that week, his wife cared for him at home for many years, hoisting and turning him in the might, but when dementia set in, he forgot he could no longer walk, and she couldn't cope any more, and struggled with visiting him. Guessing he was late 70s. There is a bike procession, as normal, ahead of the cortege, but I can't get out of work in time for that.
     
  19. Grace L

    Grace L Registered User

    Jun 14, 2014
    647
    NW UK
    Hello, Still here, not gone in for my knee Op yet...


    AnnM,
    I spent years feeling drained, running on empty, and sleep deprived when I was looking after my husband.
    I described it to my GP it was like having permanent 'long-haul jet lag', I felt trapped having no way out.

    When my GP did a full blood check, my Vitamin D was really low, and I had to take extra strength tabs for several months.


    Recently, I'm feeling soooo tired all over again, and I'm not even seeing MiL on a daily basis.

    And to those who asked, No , I'm not being reimbursed for any of the things I buy for MiL.
    I can afford it ... well that's what I tell myself. Its only for groceries £20 here and there.
    I suppose when you add it up over the year it is a lot of money, especially as it is most weeks.

    I trust my niece 100% with the money I've given her. She will continue to get MiL her weekly treats.
    She knows to avoid buying cakes as MiL will eat the lot. She's been known to eat a box of Mr.K cakes in a day.
    My niece knows how to 'distract Granny', and empty the fridge of rotting food , and replace with fresh.:)

    ALL of my in laws (MiLs sons and daughters) know I do this, and have never once given me money,
    or offered to buy xyz. If they went shopping for their mum they would ask her for money.


    Hmmm... SiL asking her Alz Mum for money, I'm lost for words ... that are not swear words.
    MiL gave (not a loan) her daughter some money for her last car. Long time before Alz diagnosis.
    At the time, SiL was single, no boyfriend. She got her way £££ and never looked back.
    She does not really need a new (second hand) car. Boyfriends mum and dad refused to lend them money.
    I don't think MiL has handed over any money, but if she does, I will report it.


    Hello to the new people on TP. xxxx I'll try and catch up with the rest of you later xxxx
     
  20. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,918
    Suffolk
    I watched JK last night as well. I felt I'd been through the wringer, heaven only knows how the competitors felt. Obviously Jason could deal with it!
     

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