Dementia’s journey

Discussion in 'I have a partner with dementia' started by Dutchman, Aug 31, 2019.

  1. Dutchman

    Dutchman Registered User

    May 26, 2017
    407
    Male
    Devon
    Hi there. I’ve been reading the leaflet issued by Cruse and one of their DON’T do it is to take drugs when we’re going through bereavement type symptoms. They say it’ll only mask the symptoms and emotions will come back. I’m taking Prozac now hoping for some relief and now I’m worried
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    407
    Male
    Devon
    Hi there. I’ve been reading the leaflet issued by Cruse and one of their DON’T do it is to take drugs when we’re going through bereavement type symptoms. They say it’ll only mask the symptoms and emotions will come back. I’m taking Prozac now hoping for some relief and now I’m worried
     
  3. Dutchman

    Dutchman Registered User

    May 26, 2017
    407
    Male
    Devon
    Hi there. I’ve been reading the leaflet issued by Cruse and one of their DON’T do it is to take drugs when we’re going through bereavement type symptoms. They say it’ll only mask the symptoms and emotions will come back. I’m taking Prozac now hoping for some relief and now I’m worried
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    When they say dont take drugs, I suspect that they are not talking about drugs prescribed by a doctor.
    Your GP knows your situation and feels that the Prozac will help. Dont just stop them.
     
  5. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    835
    Male
    Newcastle
    You can't judge your own efforts by referencing what others seem to have done @Dutchman. Everyone's situation is different. I have read all of your posts and I am 100% convinced that what you have done is not just the only option it is the best option for your wife. As her world closes in you need to take assurance from the fact that the routine of the care home will become both familiar and necessary to her. You are used to putting her first and are continuing to do your best for her. Take some comfort from that. At your own pace and in your own way, embrace your new situation and try to leave regrets behind. You'll maybe never be free of them entirely, but you have only one life and need to dedicate some time to looking after yourself. I hope that the amazing response that you have had from members of this forum shows that we all have your best interests at heart.
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    @Dutchman - prescription by GP isn’t what any bereavement councillor would say not to take.
    Prozac won’t mask these emotions, it works to help boost chemicals lacking in the brain caused by depression. ( actually that’s a really simplistic explanation but it explains enough how they work!)

    You need help at this time & cyberspace isn’t always the best place for reliable information.

    Exercise, healthy diet & medication can all help relieve depression. At the moment your motivation for exercise & healthy diet I expect are low; so let the Prozac help you balance your equilibrium a little so you are able to instigate the exercise etc you need to rejoin the human race.
    Personally I feel I dip in & out depending on emotional stresses etc, but the tablets do help.

    Keep posting we are here to support each other. Keep taking the little pills!
    C
     
  7. Dutchman

    Dutchman Registered User

    May 26, 2017
    407
    Male
    Devon
     
  8. Dutchman

    Dutchman Registered User

    May 26, 2017
    407
    Male
    Devon
    I’ve lost a post so here it is again. I here sobbing my heart at home because my wife has upset me so much big time. I went to the care home today to help with her personal care, get her pyjamas on but she was very uncooperative and kept pacing the room pulling me to the outside door saying I want to go, please, please, you’ve got to, please I want go home and says I’m going to cry and then starts to cry. This sets me off too.

    I was so tempted to take her home there and then my emotions are all over the place but I know I can’t lose this care homes accommodation and who’s knows what will happen if she did come home here. I just can’t the chance.

    I can’t take it anymore and say to the staff I’ve got to go and just about get home and driving and crying all the way. I phone the home later and tell them to get an emergency doctor to check for another UTI and they will try some Diazepam possibly.

    I’m all on my own doing all this despite my doctor saying the family should get more involved. How’s that supposed to work when they’re all 5 hours away with full time jobs.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Im sorry you had such an upsetting time - it definitely sounded like she was sundowning and I know that was the time it was worst when she was at home. If you took her home I think that she probably wouldnt recognise it and would think you have abducted her.

    Next time she asks to go home, ask her where her home is and what it is like - you may well find that the home she wants to go is not the one that she shared with you

    Please remember that her reality is not the same as yours.
     
  10. kindred

    kindred Registered User

    Apr 8, 2018
    2,251
    Dutchman, me again. NAll my sympathy. This will even out. Please keep taking the pills, they do take a while to have full effect but they will add to your resilience. As you know, I help at my late husbands nursing home and every time I am there residents are asking me or one of the other nurses to take them home in dramatic and pleading tones. Yet a few minutes later they are happily distracted.
    I think the doctor means that it would be good if someone else shared this load with you. All fellow feeling, I know it is hell.
    With warmest wishes, Grraldine aka kindred.
     
  11. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    395
    Sheffield
    I’m so sorry it awful when they want to come home. My husband was the same when me and my daughter visited on Monday. But when I visited yesterday he was much better and it was all forgotten. It’s so hard emotionally I walk home it’s only half an hour. But I usually cry when I leave for 10 minutes.
     
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    So @Dutchman I had a horrendous day visiting Dad today with my poor mum up to visit present to all the unpleasantness.

    Sometimes life just sucks! So I found myself bawling & just so desperately frustrated that I couldn’t care for either of my parents.
    The tall thin dog has been walked & is now snuggled up to me on the bed! Not to everyone’s liking - dogs on bed; but it’s of great comfort. I never feel alone. My canine companion is more empathetic than some people, & unconditionally adores me. even when my family reach saturation point this big soft hound will cuddle up & listen to my woes.
    Okay I have to carry poop bags in case but it’s a small price to pay!
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    407
    Male
    Devon
    Does anyone else feel desperate and also frightened of the future or am I just taking all this extraordinarily badly. I frightened because I’m on my own. I wouldn’t want to and couldn’t anyway replace my wife, I’ve loved her too much.

    I know she is lost to me already through dementia but the thought of a future on my own fills me with an absolute dread. I’ve always been with someone and I thought, when my wife was at her dementia worse, that it would be easier with her out of the way. How wrong I was. My caring role is gone and my wife is almost dead to me, my companion and best friend gone.

    My daughter and son are here staying with me at the moment . They’ve seen their mum at the home today and they thought it wasn’t that bad. Even told me what they thought was the best way visiting. But even as their mum they are a step removed and tomorrow they go back to their lovely families. I’m jealous as hell and I know I shouldn’t be. But I can’t help it.
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,721
    Kent
    I feel for you @Dutchman.

    I`ve been in something similar to your situation. We are all individuals and this form of separation affects each of us in a different way.

    All I can say is there is no way out.

    Our families may be one step removed from our spouses but they are grieving too and the decline of both parents instead of one could be the biggest tragedy of all.
     
  15. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    395
    Sheffield
    It’s so sad I know how you feel my husband had been in the care home 6 weeks now. I went this morning as they had a coffee morning, He had lost his hearing aids. I really hope they find them he’s only had them since April. They are insured. I felt like bringing him home and looking after him myself! I went to town after but so felt sad as I always took him to town for coffee I felt so lonely having coffee in John Lewis on my own, I cried when I got home the house was so empty!
     
  16. Dutchman

    Dutchman Registered User

    May 26, 2017
    407
    Male
    Devon
    I’m sitting here with my family and I feel awful. They’re going back soon and I’ll be alone with my thoughts . Do I visit my wife. Do I just go back to bed . I feel I’m going to have a nervous breakdown over all this as there’s no way out. The future looks bleak and empty.
    I get stressed when I go to the care home and I’m stressed here. There is no escape from it all. My body aches and I’m loosing weight because I’ve little appetite .

    Not much of a life is it!?
     
  17. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,266
    Female
    Chester
    I've been following your thread and I don't really have a lot to add.

    However I think going back to your GP might help. As others have said there is a chemical imbalance in your brain and tablets might help, maybe you need something stronger. Did your GP refer you to counselling, if so please follow this up, this can take time to be accessed on the NHS and maybe consider paying for some private counselling.

    Whatever you think about what you read of what others go through, you have been through an awful lot whilst caring, and you did a brilliant job for your wife.

    I don't know whether the experience I am going to recount below will help, but it might:

    My son is dyslexic, and for about 6 or 7 years I did battle with the school system to get him help, on and off I couldn't sleep for being so upset I hadn't got him help, and that I had failed him. I had some counselling last year, and the counsellor said to me I didn't fail him as I kept asking for help, I did all the right things however those I had asked didn't help. This gave be a big mental release with someone else telling me it wasn't my fault.

    It isn't your fault your wife is how she is, it isn't your wife's fault, it is the disease's fault. You did your very best to keep your wife at home, and you are doing your very best for your wife now she is in a care home. She needs you as her advocate in the care home, and to navigate the many hiccups in the care system that she yet might come across.

    It isn't easy to go on do things when you feel as you do, and the first second or third time you do them they won't make you feel any better, in fact you will be thinking I shouldn't be able to do this, as life shouldn't have turned out this way, but you will be taking something out of doing them. I lost my first child (stillborn), which I know is very different, so I went back to what I did at the time, cycling and canoeing, but as I did them all I could think was I shouldn't be doing this I should have a baby at home to care for. But slowly slowly I took pleasure in doing them. This might not be right for you but for me I'd suggest try and find something out of the house to do every day - it might be something you did before or something new. It might be that one week you do something on Monday, the next week Monday and Wednesday - slowly build up. If you can find something that will involve interaction with others - however disconnected you feel - I think this will help you slowly reconnect. One day drive/ walk to a local cafe and buy a cup of coffee, chat to the waitress and ask them if they are busy today, you will slowly become a regular and chat with you. Go to a local park and walk round, I like looking at the light on the leaves of the trees, it changes all the time, and then when the trees are bare the light is different. If you like dogs see if there is a local animal rescue centre in need of a dog walker, they are normally desperate. You mentioned a bike, is there a nice traffic free route near you that you can ride, take time to look at the plants trees on it, this might help distract your thoughts. Everything you try to do, try and do 4 weeks running as it gives your body and brain time to accept it.

    This might all be too much, this might not be who you are, but hopefully there are some thoughts here that connect with you to help you.
     
  18. Dutchman

    Dutchman Registered User

    May 26, 2017
    407
    Male
    Devon
    I’ve just phoned the home and they tell me that my wife didn’t sleep all night and someone was with her till 5 this morning. Then she wasn’t very compliant during her personal care. Then later she smells and won’t let them touch her to change her.

    How could I have done all this day in day out at home 24/7 on my own. Little sleep, uncooperative wife? I suppose that’s why I pay all this money to have all this care provided.
     
  19. Dutchman

    Dutchman Registered User

    May 26, 2017
    407
    Male
    Devon
    Thanks for such a long and detailed compassionate answer. I did try private counselling but at £80.00 a go it was too much for me and after 3 times with no shift I ended. I’ve been twice to a hypnotherapist and it could produce results. I’m on Prozac but I doubt if they’ll up the dose, just tell me to wait for results as I’m advised it takes 4/6 weeks to feel different. Trouble is I want to feel different NOW.

    I’m told by my children who saw their mum yesterday that I shouldn’t expect to visit each day and not for so long. I’m caught between a rock and a hard place. If I don’t go I miss her but then she’s not any company when I’m there and is constantly anxious so I come away upset. She wasn’t any type of companion when she lived at home, dementia killed all that. But I had the role of carer and it filled my life. Now dilemma after dilemma with impossible situations.

    Thanks once again
     
  20. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    870
    Pain and loss is part of the human condition.I have been in a place where there seemed to be no hope but am now able to look forward.There is still sadness but no longer overwhelming.Many people said to me 'you won't always feel this bad' and they were right.Feeling better creeps up on you,small things rather than anything dramatic.My life will never be the same but this is where I am.Be patient and kind to yourself.Try not to feel guilty,there is absolutely no need.And as JM said try to do one thing to break the cycle of sadness and pain.One step at a time.Do take care of yourself
     

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