1. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    520
    Female
    High Peak
    ...and I don't want to go. I don't want to see her, don't want the horrors of dementia in my life. Don't want the responsibility for someone I'm not even sure I care about.

    So right now I am procrastinating, as I do at this time every week. There's a while to go yet, I have to go to the Post Office and do some shopping first, but those things are just a 5 minute walk. So I will go and do my chores then return to procrastinate some more.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,850
    Kent
    Have a week off @Jaded'n'faded. Your mother possibly wouldn't realise it unless someone reminds her.

    It`s tough enough caring for someone you really love but caring for someone out of duty is even tougher. I know because I've done both.

    It is not set in stone that you must visit at a certain time on a certain day. Give yourself a break and take yourself out for a coffee.
     
  3. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,459
    leicester
    I agree with @Grannie G, enjoy the sunshine, go for a coffee..
    Visiting is not written in stone
     
  4. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    520
    Female
    High Peak
    Oh, but I couldn't do that!

    You're right I don't have to go. I tell myself this every week. No one would know. Mother certainly wouldn't know.

    But somehow I have to go, have to see for myself how she is. I feel like there are changes happening at the moment, like she is starting to move into the later, quieter, final stages. But she isn't there yet. She is still conversational though much of it is nonsense. I am her only visitor and she does appreciate my visits as the rest of her time is spent alone in her room. (She doesn't like people.) She is half in/half out of knowing me - she's refused to believe I am her daughter for a long time (presumably I am too old) but has recently said, 'Are you J'n'F?' when she saw me.

    How I wish I knew when it would end, then it would be so much easier to bear. But her health is otherwise good and I fear she will see dementia through to the bitter end.

    I will visit less if/when she declines further but don't feel I can do that yet. I feel like I am seeing the last bits of the mum I know/knew.

    I thought my guilty conscience was safely locked away in a little box in the airing cupboard, but no. It follows me round constantly. Yet it is fueled by me. Family, friends and others all say the same - don't go. So why do I make myself do it?
     
  5. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    520
    Female
    High Peak
    Well, I'm back. It wasn't a great visit but not the worst either. Today she thinks I am her cousin but later I became her mother :eek:

    She has been out on trips with R (my late father) but she's never seen him before and doesn't know if she would recognise him now. (??) And he wouldn't let her drive the tray. (???)

    She asked if I liked her new shirt and pulled down her trousers to show me her knickers.

    She thinks it terrible that 'all the money' will go to that blind girl. (???)

    Finally she told me she'd love to stay for lunch here at my place but had to get home. Eeek. Distracted her with my trusty, 'Oooh, is that a pigeon?' ploy, cut her off at the pass and after a pat on the shoulder and loud peck above her head, I thrust chocolate in her hand and legged it to the lift. Had to share it with a rather strange man who talked at me (not a clue what he said but I mmmm'd and nodded), made suggestive winks and didn't smell very sweet. Fortunately it's just one floor and I was able to make my escape.

    The cloud has lifted for another week - phew :)

    Now I shall reward myself with half an hour playing in the garden with the kitties. Roly (the caramel one) has just brought me a nice big fat moth to play with... Yet another one. He's averaging 2/3 a day at the moment :rolleyes:
     
  6. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    I hate going in the lift, for the reasons you mention, so I go in the lift on the way up to the third floor, because I am too psychologically and physically exhausted to use the stairs, and use the stairs on the way down. A small relief, if only one way x
     
  7. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    520
    Female
    High Peak
    Visited mum on Monday. I will use my usual phrase to describe her - the same but worse.

    I thought I'd say a bit about my care home experience. I've been visiting every week for the past two and a half years yet the place is still a mystery to me. I don't even know how many residents there are - I'd guess 30-40 over two floors. But I just go in, head to the lift, go up to mum's room, visit then leave. I rarely interact much with anyone else. Usually I will see a carer or two on my way and we say a brief hello. There are usually a couple of people (residents) in each of the lounges though sometimes the place is like the Marie Celeste. I have no idea how much is currently occupied as some residents are bedbound and others (like mum) rarely leave their rooms.

    There's a nice activities lady though I rarely see any activities taking place. To be honest I'm not sure most residents are up to it. I have seen a few seasonal things - Easter bonnet making, dressed up staff and a singer on Remembrance Day and there's always plenty of cheer at Christmas. The rest of the time it seems the activities lady mainly visits residents to paint nails and chat. Which is OK.

    But there is no lively atmosphere. The few souls I meet wandering look lost, the sad ones in the lounge unable to move from their chairs and stuck in front of another antique show or quiz they can't follow. Pretty sad really.

    There is a core of long-term regular staff, some I like, others I don't. There are carers I see once then never again - presumably temp/agency staff. There are care notes in each resident's room though these are often poorly/imcompletely filled in. Often they are illegible. (Or just amusing, e.g. '2 profitor rolls'.)

    I usually visit about 3-4 in the afternoon, which limits what I see. Often the manager has gone (or is elsewhere) and the office is shut up, though I can email the manager and she is quite responsive. The home has a nurse on the premises 24/7 which is good.

    There are a million things I could complain about but I rarely do. Overall mum's care is good. I 'don't sweat the small stuff' because I think it is immensely hard to give each and every resident the care they deserve, all the time, with such a tight staff budget. And care homes evolve. A lot can change if a couple of occupants leave or when new ones arrive. Same with staff.

    Do I trust them? No, not entirely. There have been some things I really haven't been happy with and at least one member of staff is dishonest. (The manager agrees but it is impossible to prove.) I feel the management company have their own agenda and 'best care for individuals' is not at the top of their priority list. I think 'adequate care' is what they go for. We have to watch the invoices because they don't think twice about charging for hairdressing every week even if the hairdresser hasn't been for some reason. It's as if they know you won't be sure what has/hasn't happened because 1) you're not there all the time to observe and 2) the accounts of our PWDs are not reliable. But they've had over 100 grand from my mother already and know she isn't going to run out of money. The cynic in me says that makes her a desirable resident so I know they will try to 'keep me sweet'.

    I've written this account because I feel my CH experience differs somewhat from that of others, who seem far more involved in the CH 'community' and where their care homes seem happy, lively places. (Thinking of you @kindred !) Mum's place, though it is bright and clean and individual staff are cheerful and helpful, just seems.... I don't know.... like a place where people are just shut away quietly until they die. I have never seen anyone there 'living well with dementia'.
     
  8. kindred

    kindred Registered User

    Apr 8, 2018
    2,278
    Hello, good to hear from you and this is such an interesting and rather sad description of life in your mumj''s care home. I've only come on to say hello and to offer an insight into this kind of atmosphere. At Keith's nursing home as you know, the activity nurses were amazing. BUT in the sister home down the road, very posh, the atmosphere is flat. Enter a gorgeous young girl who has taken upon herself the task of being activity person- most of the ones who try leave because trying to energise the place is almost impossible on your own. So I have accepted the role of activity consultant and spent the day with her yesterday. Most young girls are a bit shy but I am not (shy or a young girl) so we sung, we danced, we got people awake and clapping, those who could did the twist with us … so much laughter. Yes, it can be done especially with someone lively and mouthy like me. BUT having a heart to heart with lovely young girl afterwards, she says a lot of the carers don't want the residents livened up because they get agitated … it's obviously easier to live with a kind of muffled peace. So we will have to see what happens... But for goodness sake, these places are homes, they must have some laughter and fun …
    with love, Geraldine aka kindredxxx
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,773
    Female
    South coast
    Hi @Jaded'n'faded

    I have a feeling that the reason that the atmosphere is like it is is because of the time you visit.
    Quite often activities take place in the mornings - they did in mums care home. The residents are at their brightest and there is more of a upbeat feel. By the time you get to the afternoon, most of the residents are having an afternoon snooze and the whole place feels much more quiet. Then come late afternoon the sundowning starts and it can get a bit hairy.

    Id also like to mention that having too busy and lively an atmosphere is not necessarily a good thing. Many people cannot cope with too much stimulation and it leaves them overtired and irritable - a bit like a small child at the end of an exciting day. So you need a balance - some bustle and stimulation, but not too much.
     
  10. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    520
    Female
    High Peak
    Yes, @canary I think you may be right that I visit during 'siesta time'. The CH isn't in the least bit gloomy, nor have I seen residents needing further attention or activities to occupy them. It just seems.... quiet.

    I think the lack of a lively atmosphere probably reflects the personalities/needs/behaviours of the residents really - few are up to doing much :(

    I should also add that Dear Mama hates the lovely activities lady with a passion! Mum thinks she has known this lady all her life, that she has always been really stupid, especially when she (mum) used to teach her. The truth is you couldn't meet a kinder more cheerful, patient person. Mum does not know her nor was mum's career in teaching...

    Sadly it wouldn't matter what activities were arranged or if staff and residents were doing the can-can naked in the lounge - mum would still be scathing and rude and would refuse to leave her room. You can lead a horse to water..... :(
     
  11. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    520
    Female
    High Peak
    I visited yesterday and found myself feeling somewhat distant and detached. I felt I was there more as an observer than mum's daughter.

    She was downstairs in the lounge annexe when I arrived - I assumed she had been guided there after having her hair done (which she loves.) I took her back to her room (she wanted to go back to 'her place') which is about 8 yards to the lift, up one floor, then another 8 yards at the other end. It took more than 10 minutes and I was surprised at how poor her mobility is now. Usually she's sitting in her room so I don't see her walking much.

    She complained of severe pain in her legs. By the time I got her sat down (she really struggled with turning round and judging where the seat was) and asked again, the 'excruciating' pain was now in her back. Mum has always refused to take pills of any sort so it wouldn't occur to her to ask for pain relief. I nipped out to find a carer and asked if she could have a coffee and some painkillers. These duly arrived and I had to persuade mum to take them. She glared at me but complied. By now (as she told the carer) the pain was not in her legs or back but right across her shoulders and sometimes in her arm. Both arms. And her back. Then she wanted to show him the rash on her arms and the marks. There is no rash, the marks are freckles and have been there forever. Tut.

    But I didn't need to know exactly where the pain was - the expressions on her face as she was walking said it all - each step took enormous effort and really seemed to cause her pain. Poor mum. Because she manages OK with the frame (since breaking her hip 18 months ago) and I don't often see her walking, I have overlooked the fact that her mobility is declining.

    I have noticed the increasing paucity of speech though and yesterday was particularly bad. When she recognised it was her turn to say something in the conversation, she just said random non-sensical things, talked about not having seen her husband or mother (hardly surprising...) or used one of her stock phrases such as, 'So did you have a nice Christmas?'

    She has increasingly developed a 'don't care, what's the point' attitude. She claims she likes to just sit in her room and read though I've not seen her reading or even wearing her glasses for months. She won't watch TV though sometimes a carer puts it on for her. Mostly she just stares vacantly into space, though she does love the trees she can see from her window. One already has its Autumn colours which she finds especially pleasing - talks about it over and over.

    So a somewhat sad visit. When the decline is gradual, you don't always see it if you visit the person often. But things are definitely starting to slide now. I'm hoping a bad case of flu or something sees her off this winter as I am dreading her descending into the mute/bedridden final stages. I don't know if I could stand that.
     
  12. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    520
    Female
    High Peak
    Yesterday's visit was very difficult. I knew I was in trouble as soon as I saw her - she was wearing her 'thunder face'.

    She launched into her tirade of woe before I could sit down. It was all about getting out (they won't let her), going home (she wants to go to her mother's/her place/the other place), she needs to catch the bus, she wants some clothes ('no, I don't want you to buy them I WANT TO GO OUT!!!')

    On and on, at increasing volume, she hates everyone here, the food is awful, no one does anything for her, she is bored, bored, BORED!

    I did my best. Repeated the usual, 'the doctor says...' etc, but it did no good. 'There's nothing wrong with me!' she says, 'I'm better now!' I remind her how much she likes getting her hair done and the trees outside her window (because she does, and goes on about them endlessly) but she just turned with a really nasty sneer and said, 'You want to swap places then?'

    The weird thing is, the angrier she is, the more lucid she is. Her speech was far better too when she was ranting loudly. Last week she could hardly string a sentence together, yesterday no one would have misunderstood her. Then a staff member came over and started talking to her , referencing something that had happened earlier. Mum switched! She was lovely (well, pretty smarmy actually) to this woman (but talked complete nonsense to her) and after she left, told me how nice she was. But.... 'Not like all the others!' Switch back! The tirade resumed - I could hardly believe the massive change in her then back again in just a few minutes.

    I suppose it's good to know hostess mode is still functioning in mum's brain... Or not.

    But she does have a point. She is - effectively - in a prison. She feels like she is being punished for something. She is not allowed to do all the things she wants, which mostly involve going out, like shopping, visiting people, going for a coffee or going on holiday and no one is able to give her a 'valid' reason (as she sees it) for stopping her. The alternatives she is offered - occasional activities, watch the TV, talk to others in the home - none of this appeals to mum even slightly. She hates other people (looks down on everyone so has never had any friends) and won't watch TV as she clearly doesn't understand it and anyway, 'it's all rubbish, I just want to stay in my room and read.' Only she can't do that now either. She still pretends sometimes but no one is fooled.

    So what does she have left in her life? Every day is the same and there is nothing to do that sparks her interest. All she can think about is what she's not allowed to do. So I'm not really surprised she's angry. I'm sure I would be. I just don't know what I can do about it.
     
  13. Helly68

    Helly68 Registered User

    Mar 12, 2018
    469
    I am afraid I don't have an easy answer to your question.

    I do find that my Mum - mid to late stage mixed dementia in a care home, does become much more animated when angry. She is formidably determined (shouting, throwing things, hitting if vexed) and can change from sweet little old lady to harridan in about 0.3 seconds. However, this determination has kept her alive and she is in what must be a terrifying and frustrating situation. Mummy isn't looking for reason any more, she is beyond that, but is prone to sudden emotional outbursts - love, hate, crying - it all cycles very quickly - perhaps because she also has bipolar disorder, though this is controlled by lithium.

    There are some things we can't change for our loved ones, however much we want to. Doesn't make it any easier though
     
  14. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    520
    Female
    High Peak
    Today mum was fairly stable. All she talked about for an hour and a half was how bored she is. (Yes, mum, I know.) So we played, 'Why don't you...? Yes, but...', round and round, over and over till I lost the will to live.* Her solution was that she will have to move. She IS moving sometime next month she says. OK, I told her, 'Let me know when you've sorted things out and I will help you shift your stuff...' ;)

    Halfway through the visit it dawned on me just how detached I have become. There is nothing personal between us - I could have had exactly the same conversation with someone else's mum. I feel no attachment towards this strange person and feel like I am merely managing a situation that I am responsible for, going through the motions, pretending that my visits mean something when really whatever I do seems pretty meaningless and pointless.

    I don't like how I am feeling but can't see it changing either :(

    * Eric Berne's Games People Play, if anyone remembers that - transactional analysis.
     
  15. TNJJ

    TNJJ Registered User

    May 7, 2019
    769
    Female
    cornwall
    I can relate to that.I usually have the “I’m bored “scenario but today I had the “I can’t be bothered “one..

    Today was a struggle for me and him but there is nothing I can do for him(newspapers tv all looked at)
     
  16. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    610
    Your mum sounds a lot like mine @Jaded'n'faded . I used to correct her when she said things like she was coming round to my house the next day or she wanted to go on holiday. Now I just let her ramble on. It seems to keep us both happy.
     
  17. annielou

    annielou Registered User

    Sep 27, 2019
    209
    #17 annielou, Oct 14, 2019
    Last edited: Oct 14, 2019
    Today mum was fairly stable. All she talked about for an hour and a half was how bored she is. (Yes, mum, I know.) So we played, 'Why don't you...? Yes, but...', round and round, over and over till I lost the will to live.* Her solution was that she will have to move. She IS moving sometime next month she says. OK, I told her, 'Let me know when you've sorted things out and I will help you shift your stuff...' ;)

    My mum and I have the bored, can't be bothered conversations all the time lately, and some days when I turn up it's like she's waiting for something to have a go at me over. I can usually tell by the way she answers my hello when I go in.
    She's still in her own home and has only just been to the gp despite having symptoms for a couple of years. I'm see her every day but she is so lonely and fed up because she has no one but me and hubby and only sees my sister 'once a flood' as she says. Even when she's with us she gets a bit bored as she's not up to doing much and having a proper conversation with her is hard work so we normally just sit and watch simple programmes on tv. As soon as she's on her own at home she's bored and hates it but won't do anything I suggest to fill her time.
    I feel so sorry for her as she probably can't remember what she used to like doing or how to do the things she used to do and it can't be fun being on her own and not always knowing what she's supposed to be doing or even where she is at times.
    I find it really hard that I can't fix things for her and that she won't or can't do anything I suggest to help her fill her time. It does get me down and frustrates me even though I know it's not her fault it's hard to always remember that when hearing the same thing again.
    I find it's getting harder to cope spending time with mum who is not like the mum I know anymore.
    I think it sounds like you handled today well by keeping calm and just going along with what she said.
    I wish I had managed that today as I'm feeling really guilty today after during a long round of something similar today mum told me she didn't want to be here anymore and I told her I didn't want to be here anymore either as I feel so useless and pointless as no matter what I try I can't help her and might as well not be here. Which I now feel extremely horrible about as that serves no purpose only to maybe make her feel guilty and worse which I don't really want, and can't believe I said it aloud to her.
     
  18. TNJJ

    TNJJ Registered User

    May 7, 2019
    769
    Female
    cornwall
    You’re not on your own with the feeling guilty.I have had a shouting match with dad before now and it does eat into you.
    He only listens to the radio now or tv.Cannot read the newspapers all the way through as he gets “bored”.

    I hate this stage (mid) .It is really difficult to manage .Its like trying to entertain a toddler.
     
  19. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    520
    Female
    High Peak
    A definite downturn today. Had to help mum get out of a chair - usually she can manage. It was like lifting a dead weight and she just didn't know what to do. We walked (using her frame) from the lounge to her room and I thought we wouldn't make it. She was wobbly, weak and couldn't seem to move her feet properly. She complained her back was really bad and a couple of times I saw her face contort in pain.

    Back in her room, I perused her care notes. As usual, incomplete, inconsistent and largely illegible but hey-ho. I suppose it doesn't matter that they write, 'bannarnas + huny - decloined'. But more worryingly, mum has been unwell for most of the week and had a fall on Saturday night. No one phoned me :( Further notes mentioned doing regular obs, testing for UTI (neg), contacting the phone triage service and phoning the GP.

    I was really annoyed - they are supposed to phone if she has a fall and always have before. Went to find a nurse... She confirmed all of the above and also said they are struggling to get mum to eat much. I know. This has been happening for a while but I thought today that she'd lost weight - her shoulders in particular looked really thin.

    The lack of phone call was duly noted (I was nice about it) and the nurse went on to tell me they'd called the out of hours doc but they'd refused to come. Called mum's GP next day who also refused to come. Great, innit? The problem is, there's nothing particularly wrong with mum (as far as I can see) so there is little a doctor can do other than say, 'Yes, she's getting worse isn't she? The disease is progressing.'

    And it is - inexorably. She's not going to be mobile for much longer and her speech was really poor today. She would start saying something but the sentence would peter out after 3 or 4 words and what she did manage made no sense. There were more made up words today too.

    She doesn't have a cold or a UTI or a chest infection, or anything else really but she says she doesn't feel very well and that's very unusual for mum. Says she just wants to sleep though she doesn't sleep all that much. And she is so unsteady on her feet I think further falls are both inevitable and imminent.

    She has been fairly stable for the past year but I'm really seeing a decline now.
     
  20. millalm

    millalm Registered User

    Oct 9, 2019
    20
    I'm so sorry you are seeing such a swift decline, it is unbelievable how quickly this disease can change course. My Mum went from walking independently to needing a wheelchair in less than a week as she suddenly started walking into things, and sliding down the wall , and it seemed like she had forgotten how to keep herself upright. I hated to see it, but the thought of falls and stitches and broken bones seemed to be the greater evil. You said she didn't seem to know what to do to get up from the chair, it sounds like there has been a definite change in her cognitive ability so please don't wait to have them reassess her mobility. Here in Canada we are facing the same issues in care homes, they really are so understaffed they only have time to provide the basic care, and phone calls to family and good communication just don't happen. I too try to be nice about it, but my Mum's welfare comes first and so it is a weekly battle to try to stay on top of her changing needs. Pleasant badgering has become my approach to making sure she is as well cared for as possible. I have become resigned to the fact that pushing every step of the way ( like Sisyphus) is just how it is going to be, and so I try not to let it get me down, but let the tears flow when they come.

    It is a tough row isn't it?
     

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