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  1. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,529
    Ireland
    Dutchman, I completely understand how you feel. The "middle" stages are, I think, probably the most difficult for the carer, and there were often times when all that kept me going was telling myself "this won't last forever". But of course, that brought guilt with it! My husband wouldn't go to a day Centre or anything. It is very isolating.
    Eventually, as his illness progressed, it actually became easier. He was more content, and just pottered about and we sat in armchairs side by side and watched DVD's, looked at magazines, and I took him out to the shops every day, and for tea and cake. Sadly, this didn't last either. Eventually, he needed full time care in a nursing home, where he thrived for several months before succumbing to aspiration pneumonia.

    It's very difficult and can sometimes prove impossible, but you do need to try and get even a couple of hours a week to yourself. Maybe invent an appointment that your wife can't accompany you to, and arrange for someone to stay with her. I hired a man to "help in the garden", which he did, but he was there to keep an eye on my husband. They did a little pottering around the garden, then made themselves tea and snacks, then pottered some more, then made lunch....!
     
  2. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,485
    East Sussex
    @rosy18 , just in case you missed this
     
  3. rosy18

    rosy18 Registered User

    Jul 23, 2016
    1,279
    Female
    Blackpool
    Thanks Sam, yes I've PM Gina.
     
  4. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,605
    Hampshire
    Is everyone OK? It's gone very quiet on here!
     
  5. Dutchman

    Dutchman Registered User

    May 26, 2017
    412
    Male
    Devon
    Is there any wife/partner or husband/partner out there who is experiencing what I'm experiencing? My wife is at the stage of Vascular Dementia where she still appears okay but her behaviour is becoming more not normal. A person looking after her mum or Dad doesn't have to live 24 hrs including bed time with their loved one, see them struggle with normal activities like what something is called, what's the time, tv timing and remote control operations, difficulty with cash, etc, etc. I've done plenty of chats here and received plenty of good advice but I feel sometimes that I'm experiencing a loneliness that is permanent or at least going that way.

    My wife's stormed upstairs after worrying about a tv program and missing it even though we had time to spare and I'm 'alway right' and now I have to pour oil on the water even though I don't feel I have to. One day without a row would be so nice. I tred a path between helping and being accused of interfering. I'm advised that it's the illness but I'm an ordinary bloke trying to do my best and not always getting it right. I've turned the tv off and now sitting in silence writing this and wondering what awaits me when I go upstairs. I'm really, really fed upwith it to be honest and sometimes long for a big break from it all. How do I cope when matters deteriorate as they will do.
     
  6. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,529
    Ireland
    Oh, @Dutchman , it's so terribly hard! The "daily grind" takes on a whole new meaning, doesn't it? I remember several years ago, someone well meaning said to me "I know it must seem like this will never end, but you know, it will pass, and some day you'll be able to get your life back." :eek::eek: I knew the person was trying to be encouraging, but that was kind of ham-fisted to say the least!!

    The thing is though, that there's hard, brutal truth there too. It did pass.

    But knowing that truth doesn't make coping with the here and now any easier for you, any more than it did for me. Is there any way for you to get some time to yourself? Respite? Day Centre? Little breaks in it can make all the difference.
     
  7. rosy18

    rosy18 Registered User

    Jul 23, 2016
    1,279
    Female
    Blackpool
    Hi everyone hope you're all doing ok. It is quiet on here you're right Marnie.

    Marnie I do hope things are getting a little easier for you to cope with as you try and get into some form of routine and I'm hoping your Mum is settled.xx

    Lavender how's it going with your Mum?xx

    Jorgie not heard about your hols yet I hope you had a great time.xx

    Harrys'd , Mollyd , Worrier, hope you are all coping ok and PT ((hugs)) xx

    Dutchman sorry to read you are feeling so down just wanted to send you a (hug).
     
  8. rosy18

    rosy18 Registered User

    Jul 23, 2016
    1,279
    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
     
  9. Dutchman

    Dutchman Registered User

    May 26, 2017
    412
    Male
    Devon
    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.
     
  10. Pollytickle

    Pollytickle Registered User

    Nov 15, 2015
    760
    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.
     
  11. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    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
     
  12. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,605
    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.
     
  13. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,947
    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
     
  14. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,605
    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.
     
  15. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,947
    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
     
  16. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,529
    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
     
  17. jorgieporgie

    jorgieporgie Registered User

    Mar 2, 2016
    1,985
    YORKSHIRE
    Morning Ladies,
    Thinking of you all especially Lavender and Marnie xx
     
  18. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    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!
     
  19. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    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
     
  20. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,605
    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.
     
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