1. Expert Q&A: Living well as a carer - Thurs 29 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 Thursday 29 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. Dutchman

    Dutchman Registered User

    May 26, 2017
    Hello all my fellow posters.

    I want to write this while it’s still fresh. I did a stupid thing this evening. I looked at photos of my wife and me when we were younger, my vibrant wife, one who loved me and I think I took for granted. She was so beautiful and intelligent, articulate and witty. All those things that make for a wonderful marriage. All memories are personal, of course, but it’s cruel when you know that person is gone and never to return. No pills, therapy or treatment can make it better.

    So for the horrible things I say about her deep down I still love her and hate the VD condition.

    She doesn’t recognise me as her husband now which makes things a thousand times worse. Because I’ve no one to comfort me as a wife would. No hugs or kisses now. I’ve only just stopped crying and at one point I couldn’t get my breath so it frightened me as I’ve never been that bad before even when I was going through a bad divorce. And I do have no one and like a lot of us we go through this cruelty alone when all it would take is for someone to put their arms around our shoulder and reassure us.

    In some ways, if she was dead, at least I wouldn’t be constantly reminded of the cruelty of it all. There’s a vacancy of emotions now, she doesn’t recognise that I’m upset.

    Perhaps one day I’ll look at our photo albums and not sob my heart out. Until then I’ll avoid them I think.
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Oh @Dutchman my heart goes out to you.

    I wish I could say something to help. I can only say that I totally understand how you feel. I’m glad you were able to share here and I hope that has helped a little.
  3. Dutchman

    Dutchman Registered User

    May 26, 2017
    Here’s a strange day never to be repeated. We visited my wife’s patents grave yesterday, a round trip of 360 miles. Got there, spent 20 mins there and came straight home. She took flowers from another grave as souvenirs and, without going into too much detail, had a underwear accident while we were driving home. It stinks and she stinks.
    Got home, I’m all in, all I wanted was to get her cleaned up with clothes straight in the machine but no, she refuses to comply. I lose it big time and find myself pleading, begging, arguing, shouting, calling her names. Of course none of this gets me anywhere.

    In the end our daughter phones and eventually she takes her clothes off so I can wash them BUT she still hasn’t washed herself. All I can be grateful for is she puts clean knickers on....that’s something!, Today I’ve decided on getting a care plan going ....this is too much for me now.

    Daughter says why dad did you do it anyway. The journey achieved nothing for you. But thought I was doing something nice for wife. No thanks, no nothing.
  4. Dutchman

    Dutchman Registered User

    May 26, 2017
    #4 Dutchman, Jul 15, 2019
    Last edited by a moderator: Jul 15, 2019

    Oh boy, I’ve just lost it and she’s banged up the stairs. She hasn’t washed now for about 6 weeks , no regular change of knickers as if that would make a difference to a smelly bottom. When they do come off the underwear is gross and it proves there is no efficient wiping of her bottom. No wonder she smells like a farm yard. I’m attempting a carer visit principally to get her clean and if that’s achievable I can almost put up with most other things.

    Our daughter can sometimes manage her mother better and has offered to try for a wash. She lives 4 hours away but it could be worth it. But that’s not a long term solution.

    No matter what care is available out there we are really on our own in the end. Bit like dying really. I believe that if this doesn’t get sorted out and my wife continues to live like this then a care home it must be. I’m not coping and can’t see any way out of this unless I die of stress first.
  5. kindred

    kindred Registered User

    Apr 8, 2018
    Sweetheart, this can't go on. It is pushing you towards despair. I was a prisoner like you are. A care home is not such a terrible option, really not. You have tried so very hard, heck of a good man. Must not die of stress. This stress is inhuman.
    Kindred aka Geraldine
  6. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I agree with @kindred I have been reading your posts @Dutchman and this has been going on for so long and you are at breaking point. She has got to the stage where it really will take a who;e team of people to cope with her - not just one stressed person, however loving and willing. It is just too much for you now.

    My mum moved into a care home and I agree with kindred over this too - they are not so bad. They have a bad press and people seem to view them like they are the poorhouse or something, but mum was happy in hers. She made friends, joined in the activities and lost her paranoia. The carers looked after her beautifully and managed to get her to wash, change her clothes, eat and drink properly. I dont know how they managed it. Mum and I had some happy times together while she was there.
  7. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    I know what it is like to be dealing with this on your own @Dutchman as much of what you describe could have been written about my wife. If it is at all a feasible option please do consider a care home trial. I did and have found that the quality of my life and my wife's life have both improved since her move into residential care. I could not go back to the old life of cleaning up, washing soiled clothes and towels, and battling daily to get my wife to attend to the most basic hygiene, something which she no longer knows how to do. I hope that you can find a solution soon.
  8. Dutchman

    Dutchman Registered User

    May 26, 2017
    Thank you all so much for your kind thoughts. I’m getting a care package arranged to see if they can solve the hygiene problem where I’ve failed. I’m also going to phone some care homes to get a heads up on the probability of going there sometime in the future. How long that will be, well who knows, but we all know even with some good days matters will decline as they have declined over the past two years. Once again thank you all.
  9. Dutchman

    Dutchman Registered User

    May 26, 2017

    Second visit from our carer today. Main goal is to get my wife to have a shower . I know it takes a little while to get both of them to build trust but I’m still apprehensive on how long it would take get her under that shower. She’s here for two hours each session. My first go at bringing a carer in.

    . In anyone’s experience what’s expected from a carer and am I obliged to stay around even if wife likes to sleep a lot. Is a carer ok with just sitting there for secure company or expected to do something for her money?
  10. Dutchman

    Dutchman Registered User

    May 26, 2017
    I’m constantly floundering over how to handle all these arrangements and I know others are better at this simply because they’ve been longer at it, perhaps more savvy at doing it or have more practical support. I’m tired having been woken up twice by wife who has no idea of time and turns the lights on, speaks to me and opens my bedroom door at 4 o’clock this morning. She sleeps a lot during the day so it’s no wonder she awake at night.
    And, strangely, I’m sometimes wondering if I’m making too much of a fuss over our vascular dementia circumstances and then sometimes something happens which reinforces my belief that I’m struggling and on my own I can’t do it.
  11. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    It’s going to depend on what is in the care plan and what you are happy with. Put your questions to the care company so you know exactly what is expected of the Carer.

    Having spent 7 years caring for my husband without any outside help I would have welcomed someone and been happy for them to just have sat with him so I could get a break. Sadly he would not tolerate anyone in the house.
  12. Vitesse

    Vitesse Registered User

    Oct 26, 2016
    I feel for you. My situation is nowhere near as bad as yours, but I often feel that I can’t face another hour of this torment. We haven’t reached the point where my husband cannot keep himself clean, although he needs prompting regarding cleaning teeth, having a good shave etc. When you’re the only one there to look after your loved one, it becomes unbearable. I found myself the other evening thinking that I wished I’d never set eyes on him!! That is an awful feeling and makes this trauma even worse!,
  13. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    Hi Dutchman. Your situation sounds a bit similar to mine - the traumas I went through with my mum when she resisted certain things. It was tough, but both myself and the carer (it was usually the same one who spoke a common language with mum), through trial and error, found small ways of dealing with things. Mum always trusted me, right to the end (which is why a care home was not an option while I was still standing and sane), which of course helped. On the showering front, I would be ready to go out when the carer arrived, and we would both take mum into the bedroom and start undressing her for the shower. I would still be there when the carer led mum into the bathroom, and once there, I would slip out. It worked for us as I guess the distraction of the washing meant mum forgot about me quickly. Sometimes on my return I would come back to hear mum shouting obscenities at the carer and running around upstairs looking for me, but it seemed to take a while to get to this point. As soon as I appeared, a smile, and all was well.

    I also had periods when I thought I was coping, and moments when I felt on the verge of a mental breakdown myself. We are all different and as you well know each day is different, so after a bad day, I would try to hope for the next one to be a better day. Eventually, as mum's dementia progressed (she also had Vascular), she slowed down and stopped roaming around at night. In fact, before she had the big stroke and was still perfectly mobile, I'm sure she was no longer able to think about how to get out of bed. She would be awake, but making no attempt to get out of bed unless prompted. After the stroke, she was no longer able to mobilise on her own, which of course meant no chance of wandering. What a strange illness, where the worst it gets, the easier it became, in a way, to deal with. Not that we hope for decline but as decline comes, so some stressors, like the roaming, are removed.

    Our carer used to often just sit with mum. There wasn't a lot to do at times, but someone had to be here while I went out for a break. It must have been quite boring for the carer, but I was happy for her to sit on her mobile doing stuff, in between making lunch and drinks for mum and taking her to the toilet.

    I posted some desperate pleas on this site at times, and I am sure the support of others on here will help you also, in your desperate times. Best wishes.
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    The carer is there to keep your wife safe @Dutchman and in doing so give you space to rest, go out or do whatever you are unable to do when you have total responsibility for your wife’s wellbeing.

    It really does sound to me as if you are totally overwhelmed by the responsibility of meeting your wife’s needs.

    Do you think the time has come to consider residential care? It does sound as if your own well being is being truly compromised.

    It was a hard lesson for me to realise I was becoming unable to meet my husbands needs The last thing in the world I wanted was to hand his care over to others.

    What seemed to be the worst decision turned out to be the right decision and once my husband was cared for by a team , life became better for both of us.
  15. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    I agree with @Grannie G . My mother-in-law had carers in three times a day for over three years. She refused personal care, sort of half washing herself once the carers had left. During the whole of the 3 years her hair was never washed once. The difficulty with carers coming into the home is it they are time-constrained . What I found was if they didn't achieve the personal care or whatever it was within the set time of course they were rushing off to the next visit. My mother-in-law eventually went into a care home after a spell in hospital. Once there , within 48 hours they had her hair washed and bathed. The care home had a whole team of people to cajole and persuade and deal with my mother-in-law in plenty of time. If they couldn't persuade her the first time round they could always come back to the situation at a later point . It was the best decision we made for my mother-in-law to go into residential care
  16. Sirena

    Sirena Registered User

    Feb 27, 2018
    My mother had several hours of self funded care each day and the carers would provide companionship (sit and watch TV with her in the evening), take her shopping, to the park, to appointments, make her meals and also do her laundry and housework. They prompted her with personal care (she could still do it under her own steam, if prompted). I told them to begin with what was needed so it was set out in the care plan. There is no need for you to stay with them, although the first two times it could be useful, while your wife is getting used to them. If the carer is experienced with dementia she should know how to coax your wife into co-operating, I hope it works out.
  17. Dutchman

    Dutchman Registered User

    May 26, 2017
    Oh my goodness such a load of good advice. Many thanks
    Carer said that next time she’ll try a small flannel wash and progress from there. Her dad had VD so has immediate experience. She said go out if you wish but I feel I need to do this in stages. I’m off for a couple of days (wife doesn’t know) while my daughter looks after her. Lots of therapeutic lies as to where I am as I’m taking the caravan and that obviously won’t be there. A diversion is needed.

    The local Social Services have called wanting to know how I’m coping but I’m unable to leave a message I wonder what what they have to bring to the situation if I’ve got a carer plan in place. I suppose it’s good they are on my radar in case I do need them. Anyone needed SS?
  18. Sirena

    Sirena Registered User

    Feb 27, 2018
    That's great that the carer has experience of dementia. My mother's carer had looked after her own gran who had dementia so was really good with mum.

    SS did call me after I had arranged self-funded care and offered to do an assessment in case they could bring anything to the table. So I agreed to the assessment, - and the SW just said I was providing better care they they would! And that was that. Assuming they do not provide any help, you will not be on their radar, because they immediately close your case. So if you need them in future, you will have to start the process again from zero - at least that was my experience.
  19. Dutchman

    Dutchman Registered User

    May 26, 2017

    I’m sitting here , wife’s gone to bed. My daughters on her way to stay for the week. Tomorrow morning I’m off for a couple of nights on my own while my daughter takes over and looks her mum. Great you might say as I deserve the break. Problem is that this has only been achievable through subterfuge and deceit.

    My wife knows nothing and has been kept in the dark with secret phone calls and plans. When I’m not here tomorrow morning l hope that she will not fret too much. To be honest I’m feeling really horrible because of going behind her back and it’s very upsetting . All through our normal 25 years of normal life we never had secrets and now I feel I’m letting her down. You achieve a little bit of respite only to have these sneaky feelings intrude into your time away. I wish I could dislike her as it would make it easier but I still love the women I married as she’s in there somewhere and this awful VD has eaten away at good side of our relationship.

    I only hope that once away I’ll settle down
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I became a proficient liar when my husband was ill @Dutchman.

    If I had told him the truth it would have resulted in confusion , anxiety, fear of the unknown and possible defensive aggression which would not have helped either of us.

    We too were always straight with each other but pre dementia it was an equal relationship. Once dementia reared it`s head I lied to protect both of us, to make life easier. It`s not a crime in my book, it was just trying to make the best of a sad situation.

    I hope you will be able to get some relaxation on your few days away otherwise it will have been wasted. A bit of peace and freedom from responsibility may help just a little and I really hope you will feel the benefit.

    It`s not what any of us would choose. We just try to make the best of what we have.

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