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Had enough today.

Discussion in 'I care for a person with dementia' started by jorgieporgie, Apr 18, 2016.

  1. rosy18

    rosy18 Registered User

    Jul 23, 2016
    1,032
    Female
    Blackpool
    Marnie just read your thread on your concerns for your Mum with her pressure sores.
    Would you be able to have a carer in through the night to make sure your Mum was turned. If not I would definitely seriously consider a nursing home for a couple of weeks respite. This is all so difficult for you, I feel for you I really do.xx
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    38
    Thanks for being there. It's at this time in the morning 05.00 that I wake and fear for the future. Vascular dementia means a probable step change in my wife's condition.Im going to wake one morning and she's staring out the window. Will she haven't a clue how to dress, cook, not remember my name, all those things I'm warned about. I want to do the the things together while it means something, buy her stuff while she still understands, be normal.

    Anyway, thanks for listening.
     
  3. Pollytickle

    Pollytickle Registered User

    Nov 15, 2015
    756
    I'm having a 'lay-in', before tackling the awful task of dismantling what has been our family home for 49years :(

    I really would have preferred to have Mum home but the practicality of physically getting the essential equipment up two flights of stairs, was the insurmountable pimple on this particular drum. It would also mean condemning Mum to a very small world of just two rooms, whereas the 'care home with nursing' ( as they are now known in this area any way ) has dining rooms, lounges with lots of different views, homely gardens to sit out in, & something different happening on six of the seven days of the week. The staff are friendly & talk kindly to the residents - not just in front of strangers either, cuz I was in Mum's room & no-one could see me around the corner :p .....but today is only her second complete day.

    And Dutchman, you are not the only one who has endured 24hr care alone. Many of us here have lived with our parent & know exactly what that does to the strong bond that begins to crumble, rather like a suspended path over Dementia Chasm & you don't know how much will break as you cross.
     
  4. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,482
    Liverpool
    Hello all.

    I've not been posting for a few days either, been a bit manic with mum. To start with she got a chest infection which 7 days of amoxicillin didn't fix. On Tuesday the GP wanted her in hospital. She was taken to A&E in one hospital and apparently she kicked off big time as it worked out they had no bed vacancies so she was taken on to another A&E. I met them there and she was admitted and put on IV antibiotics and fluids. Yesterday she was very much brighter and I was told they were going to repeat blood tests with a view to a discharge today. I've called and the blood test results aren't back yet and they've decided they want physio to see her as she hasn't mobilised in about a week so I can't quite see a discharge today.

    Given mum's behaviour she was speeded through A&E and has been given a side room on the ward. What is great is that her 16 hour a day one to one is with her so she has supported all the time she's awake (hoping she sleeps at night). I know so many people have had bad experiences, but on this occasion I cannot fault the NHS.

    As to mum she thinks she's in a hotel and is some sort of manager. She plans to kick out anyone she suspects cannot pay their bill. It's good she's not at all distressed by being warded once again. X
     
  5. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    902
    Hampshire
    Oh Lavender, I thought something must have happened as you hadn't posted for some time. It's good that your mum has someone with her during the day - I'm sure that will help make the hospital stay a bit more bearable from a dementia point of view.

    PT - a deterioration for your mum too, and now a home. That seems to have happened relatively quickly. I hope it works out well and things work for your mum in the home. Good to hear that you feel it's a good place.

    Things not great here, I'm still finding the new regime extremely hard. I've been feeling pretty gloomy. It was bad before, but I didn't have this feeling of dread quite so much. It's because the change in mum is so dramatic. I suspect her walking days are now over. Physios tried to stand her earlier this week, but she couldn't. They are coming again tomorrow. She was able to weight bear in hospital and also a few times when she first came home, but then couldn't do it, so we gave up and started hoisting. At least they are trying though. I'm sure if she can do it, she will, but I'm feeling sad as I don't think she's capable any more. She still has muscle strength in her legs and does good exercises in the chair, but maybe the dementia has leapt along and the brain is not engaging with the legs any more. I'm not sure if it's due to the progression of the dementia or the stroke or the immobility, or all of the above, but she is now doubly incontinent. I have got a bit used to that, but it's so hard to deal with. She has also become much smaller. She lost a lot of weight in hospital after the stroke and is only eating small amounts, and I guess the immobility means that the body is a bit 'looser'. The change is very sad. The carer was here for a bit longer today and I went out in the garden for a bit. I ended up in the greenhouse having a good cry! Quite oddly though some of her conversation is making more sense than it was before the stroke and she remembers more things and can do simple sums. It's as if the stroke closed off new paths in the brain, but somehow things that had gone are coming through now and again. Fascinating, if it wasn't so sad and depressing.

    I feel so sad that the stroke took away more of my mum's abilities. So sad. So very hard to watch this 'death in slow motion' now progressing even faster. I still feel that because mum was so mobile and physically active before, and because of her grand old age of 91, she probably doesn't have long left. Although I don't want her to suffer pain and indignities now, I am devastated about the thought of her dying, even though I knew it was coming. I don't think I have ever felt such sadness before in my life.
     
  6. Carmar

    Carmar Registered User

    Feb 2, 2016
    492
    Female
    Hampshire
    @Marnie63, so sorry for your pain and sorrow. You are being the most wonderful, caring and loving daughter and I'm certain your Mum would say the same if she were able to understand how much you have done for her. The impending loss is so painful isn't it.
     
  7. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,843
    Ireland
    Sorry to hear your Mum's back in hospital @Lavender45 . Good that they seem to have her/things under control though. Fingers crossed for a discharge very soon x

    @Marnie you must be emotionally and physically exhausted. No wonder you went and had a good cry in the greenhouse. I am so sorry that you and your Mum are going through this. Sending you a huge, supportive hug, wish I could wave a magic wand for you x
     
  8. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    902
    Hampshire
    @HillyBilly - I am, utterly exhausted now. Most mornings I find it really hard to just get myself out of bed, which is very, very unlike me. I fear depression, medication for me, my back going, my left knee is now playing up too, but I also fear mum not being here with me while she's still alive. Overnight I seriously pondered the nursing home option. At least it would mean I keep myself healthy and not going down myself with mum's illness. Maybe I need time to accept this? But maybe that time will mean something will happen first, so that I don't have to face it. I know it's wrong to let myself become ill with all this, and I know mum would not want it, but I can't seem to be able to get off this particular wagon.

    I thought I was strong, but I'm not, not enough for this anyway.
     
  9. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,843
    Ireland
    You're "only" human @Marnie63 but you're doing a darned good impression of Superwoman at the moment!

    Here are my thoughts, for what they're worth.

    YOU ARE DOING A FANTASTIC JOB RIGHT NOW!

    You seem to have, in a short space of time, got a bit of a routine going with good carers. But the bulk of the "hours" are falling to you and long term that's really not sustainable.
    There is a real danger of you becoming harmed - either physically or mentally. Or both.

    There is even the slight possibility (despite your best efforts) that your Mum's condition worsens under your care (not because of your care but despite it).

    You do not want your Mum to have to go back to hospital.

    A nursing home might become a necessity if, for example you get ill or your Mum requires more care than can be given at home. Your home is just that - a home, not a nursing home.
    There are fantastic NHs out there with fantastic, caring, professionally trained nursing staff.
    Why not (though how you're going to find the time I don't know) see if you can at least identify a NH where you'd be happy for your Mum to receive care? Even if just to give you a break or, in case of emergency. Better to be in control of where your Mum might go rather than have no say in it.

    I know how torn you must be and it must be impossible to think beyond the next few hours. What would your Mum advise you to do? xxx
     
  10. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    11,469
    Ireland
    @Marnie63 @HillyBilly is talking a lot of sense. My husband spent his last 11 months in a nursing home, and is just over two years dead, and I still have problems with one knee, my back and my shoulders due mostly to the physical strain of caring for him on my own for so long. And he was very mobile! Didn't need hoisting or anything. It was just that he had forgotten how to stand from chairs, how to get in and out of the car etc., so had to be "helped" up.

    I would also worry, Marnie, that the sheer physical exhaustion and worry you are going through caring for your mum is robbing you of any sort of quality time you might have left with her. Time when you could just sit, relaxed with her, knowing that you did not have to do all the physical care.

    However know that we are here with you. There's nothing we can do to help, other than be here. xx
     
  11. jorgieporgie

    jorgieporgie Registered User

    Mar 2, 2016
    1,969
    YORKSHIRE
    Morning Ladies,
    Thinking of you all especially Lavender and Marnie xx
     
  12. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,482
    Liverpool
    Morning all.

    Marnie I cannot imagine how stressed and worn out you must feel. It is easy for us to say a care home at least on a temporary basis would be best, but I can appreciate that making that decision is a huge thing and one only you can make. I just wanted you to know I'm thinking about you and your mum as I'm certain we all are.

    My mum returned to PC Thursday evening and seemed happy to be back. She's still unwell, but not poorly enough to need to be in hospital.

    Mum seems to have accepted the nursing home as her home with remarkable ease, maybe being in hospital so long has made this move easier for her. I do have some issues with the home, it's not perfect, but it's what is achievable at this moment in time and the staff who one to one her genuinely like and care for her. Having a one to one is a bit of a dual edged sword in my eyes, it's needed to deal with her aggression, but having someone with her all the time allows mum to have meals in her room and not to join in with activities which isn't so great. Not joining in any activities disappoints me, she is still capable of doing so many things, but having someone constantly at her side gives her the freedom to say no and of course mum being mum she's exercising that right to the full. Trust mum!
     
  13. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,482
    Liverpool
    Wow our thread is silent. I hope everyone is OK. Marnie and Rosy how are things?

    I spend ages with mum yesterday, she's not mobilising and I'm starting to think mobility might be a thing of the past. This leaves me with some thinking to do. If mum's no longer a flight risk and cannot get her hands on things to use as weapons could I have her home, with a care package of course. Don't get me wrong there's nothing basically wrong with the home, but it's not home. Could I try, but what if I failed. Something for me to give thought to at least. X
     
  14. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    902
    Hampshire
    Yes, very quiet on here still! I hope everyone is OK.

    Lavender - interesting thoughts, but don't give up yet on your mum's mobility (though I know in your case it would of course come with advantages!). Is mum just not wanting to walk? So sad if that's the case. Do think carefully about the 'bring her home' idea. At times I think I'm going to throw in the towel and ask SS to look into a nursing home place for mum, it really is hard now that she is immobile and most care has to take place in the hospital bed. But, I still want to give it a try for a while with the daily care visits, as in time I'm hoping I may get to a point where this is not only doable, but I get used to it. But, that's me. I'm not giving up yet!

    Rosy - how is your mum? We haven't heard from you in a while. And PT - how are things going with your mum in the home?

    I got the vacuum cleaner out today - first time since mum's stroke - 8 weeks ago tomorrow! I am slowly trying to get some order in the house after so many weeks of 'neglect'. It's only now that I'm really starting to get some proper time to myself. We are still battling with the sore on mum's behind, though there are signs of progress. She finds it so painful now that I only have her out of bed for a few hours a day - bed is the only place she does not complain of the pain. But this will of course compromise any possibility of her using her legs again, though to be honest, I have started to accept that this may no longer be possible anyway. The physios are still visiting, for which I'm very grateful, but I guess the visits will probably stop soonish if there is no more progress. The left arm is much improved though, mum can now do much more with it, she is lifting mugs of tea and cups of water with it and seems more aware of it. She does move her legs and actually flings them around in bed a lot in the night (she shouted for me in the night as she managed to swing them right over to press against the bars of the bed - tonight we have put a pillow in place!). I do so wish she would fling them to the floor and start walking, but that would probably be a miracle. The physios are still trying to stand her with a stand aid, but she's very weak and cannot hold herself up without a huge amount of help.

    I still get days where I feel very gloomy, its mostly in the mornings. A kind of realisation hits and I get a huge feeling of dread at the thought of another day of seeing mum in her new state. But, once we have her cleaned and settled, either in bed or in the nice tilting wheelchair we have been supplied with, she seems comfortable, and I can even make her laugh occasionally. The laugh is different though. The one before the stroke was more 'normal mum', but the new laugh is, well, different. A bit like someone doing an impression of my mum's old laugh/character. It's very hard and very odd dealing with and accepting these changes, but there is no alternative.

    At the back of my mind I have a fear already of what is going to happen next. Because of the stroke, I suspect the next change, whatever that may be, will come sooner than the 22 months between the initial TIA/sudden onset and the stroke. Although it's probably much better not to have a clue, fear of the unknown isn't great either.
     
  15. Pollytickle

    Pollytickle Registered User

    Nov 15, 2015
    756
    Morning...

    What can I say...in some ways having the responsibility of all the laundry upon someone else's shoulders is a wonderful feeling, but some of the other stuff can 'irritate' when you hand over all care to the 'professionals'.

    The staff are wonderfull with the residents & treat them with respect at all times but, of course, they have more than one person to look after. The other evening ( about 6:30 I guess ) Mum was incredibly sleepy so I used her bell to summon help; that wasn't an easy choice to make, but when someone eventually arrived ( they have different buzzers for the level of urgency, & do adjust their response times accordingly ) & I explained Mum would be more compliant if they did what they had to do then, rather than let her fall asleep in the wheelchair & become ... feisty, shall we say...later if they woke her to do it, it was well over an hour before they came back. It's that kind of thing that is upsetting, but I knew it was because other residents were probably in the exact same position.

    On the other hand, she will be getting a lovely hair-do Weds morning from a hairdresser who has extensive experience of working with PWD, in the afternoon a fashion show put on for the residents by B0n M@rche with a tempting 20% off all purchases and - best thing is - it's her birthday too!
    There's no way I could do anything to make her days at home even slightly different, being in a flat & no lift, & of course I wish I had the resources to have a full-on dedicated nursing team to care for Mum in the custom built apartment in the west wing, but I don't live in Downton Abbey...we're more like a make-do tent in a lay-by... Doesn't stop me dreaming though.

    Then again, in my world, there wouldn't be pain or suffering in the first place...
     
  16. john1939

    john1939 Registered User

    Sep 21, 2017
    39
    Male
    Newtownabbey
    Hello, Sometimes during a quiet moment I think about the situation we find ourselves in.
    As a child brought up during the last war our family endured many hardships but we survived because we had the support of the greater family. During those days most of my family lived close by so you could call on relatives at a time of trouble, and there was always someone to help at the time of illness.
    Not so nowadays as children and siblings tend to be scattered to the winds, due to work and relationships. This causes feelings of isolation and despair.
    I often told my daughters as they were growing up that life is "not fair" and you will be better if you don't expect it to be. We just have to make the best of the situation we find ourselves in while consoling ourselves that things could be worse, much worse.
    Nothing is forever, time will eventually resolve everything.
     
  17. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    240
    Just the same here @Pollytickle but nothing lost by having a dream and of course we’re grounded. X
     
  18. Pollytickle

    Pollytickle Registered User

    Nov 15, 2015
    756
    Oi you sleepy-heads :)

    Has everybody survived the wrath of Ophelia? You folk in various bits of Ireland looked like you had the worst of it this time...

    I'm beginning to think our mothers are related via kindred spirit Lavender :rolleyes: cuz when I went in yesterday I was told Mum was "exerting her rights" too, refusing to eat or drink & getting a tad annoyed with the staff trying to freshen her up for the day. With that in mind, I'm going in early today to make sure the chiropodist can check her feet & ankles :confused: can't remember the last time it was done but it's an important one, with her Diabetes & things...best get a shifty on then!
     
  19. rosy18

    rosy18 Registered User

    Jul 23, 2016
    1,032
    Female
    Blackpool
    Oh Lavender what a dilemma for you. Think long and hard. I'm having a few bouts of aggression with Mum lately mainly at toilet and tablet times neither of which she wants to do so that dreaded look is happening, grabbing my hands and some verbal abuse which is new so I'm hoping it's just a blip and peace and quiet will come back PG.
    So don't rush into anything too quickly with your Mum there's no need to make any had type decisions.xx

    PT hoping you're coping with the different way of caring for your Mum as we all know whether our loved ones are at home or in a home we are still taking care of them. Hope your Mums feet were ok.xx

    Marnie just read your incontinence post so I hope you get some good feedback That must be a nightmare. At least I can get my Mum to the toilet to change her pads. (Hugs)xx

    Hope the rest of the gang are all OK not heard from a lot of you for a little while so hoping you are all alright
    Jorgie, Worrier, Mollyd, Harrys'd ((huge hugs))xx
     

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