Dementia’s journey

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

  1. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    873
    Male
    Newcastle
    #21 northumbrian_k, Sep 3, 2019
    Last edited: Sep 3, 2019
    If I left my coat my wife would put it on in a flash. It is difficult to know what she thinks about my whereabouts when I am not there but she often greets me with a smile and an easily deflected question. Today she mainly slept whilst I was there. She seemed at peace and not worried when I kissed her cheek and left after 45 minutes.

    The visit was not wasted as it allowed me to sit with 2 of the staff, answering quiz questions with other residents, and also talking about my wife and how they look after her. It was good to get to know a little about them as individuals not just 'carers'. The time we spent in friendly conversation will I am sure benefit my wife too. I was heartened to hear how well they know her ways and how to deal with them.
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    442
    Male
    Devon
    I really really don’t know what to do for the best. I hear that you need me to tough this out but I’m not tough and I so tired of the mental strain this is all putting on me.

    My dilemma is that for the same money as the care home I could have a live in carer and get my wife back. It’s so tempting but of course it comes with its own set of particular concerns.

    I visited my wife today at the home and I found it so depressing with all the business of the home going on around us and my wife saying that she hates it here. At home it would be quiet and surrounded by her belongings, her own bed. I know that here would be an extra person in our house but in the home people are coming and going all the time.

    And of course everyone I’ve asked advice from says it my decision alone. It seems at the moment the biggest decision of my life and I don’t know if I’m up to it.
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,093
    Yorkshire
    hi @Dutchman
    you are tired, so allow yourself to rest for a while ....
    maybe think of this as a few weeks of respite ... it may not be ideal but your wife is safe and being looked after where she is for now, so let that be for the present
    no irrevocable decision needs to be made immediately, you have time, so take it
    let that be your decision at this time, to give you both some breathing space ...it will do no harm
     
  4. Dutchman

    Dutchman Registered User

    May 26, 2017
    442
    Male
    Devon
    Thank you so much Shedrech. Yes she is being looked after even though she looks a shadow of herself which apparently is down to the drugs and a strong urine infection. Where’s my wife gone? I really hope that if she gets better we can have some form of relationship where we can do at least something together.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    10,809
    Female
    South coast
    If your wife has got a bad urine infection she will be completely out of it until its gone.
    Once the infection has gone she will be so much better.
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,285
    Dutchman, Shedrech is right, regard this as respite and getting her better from that infection, infections like this can really take a toll. I believe when she gets better you can have some form of relationship, and a good one. The first year Keith was in his nursing home, before he got really ill, was so so happy for us both, and I would never ever have expected this. With love, Kindred.x
     
  7. Dutchman

    Dutchman Registered User

    May 26, 2017
    442
    Male
    Devon
    That is so kind of you to say this

    I went into the home this morning and helped my wife to have personal care and get changed. I realised that I would be unable to do this on my own even if I had the assistance of a live in carer should that be something to be considered.

    I promised myself that I would go in to the home every day and today I lasted about 4 hours. Sat in the lounge for an hour with wife asleep. Dinner time she wants nothing to eat even though I try and spoon feed her. They bring an entertainer in and we all sit around and nobody is interested, my wife’s asleep and I’ve had enough and leave. Now I feel bad for escaping. My only hope is that she will want to go out with me, we go somewhere and she’ll want to return to the home.

    At the moment all she wants to do is go back to our house and when we tried a little walk outside of the home she said ‘quick’ and pulled me towards the car. She wants to escape and feels a prisoner. I feel such an idiot for making that mistake.
     
  8. Dutchman

    Dutchman Registered User

    May 26, 2017
    442
    Male
    Devon
    My wife’s reluctance to eat is very worrying although the home does try their best. I spoon fed her two sheddies and a tiny bit of her dinner and managed to get her to drink a little. We all realise where this will go if it carries on any longer and I wonder if it’s my wife way of saying I’ve had enough. I really fear for the worse. It’s only been nearly two weeks in the home and everyone says it’s early days but I’m going out of my mind with guilt, fear and clutching on to hope.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,809
    Female
    South coast
    Your wife has got an infection!
    She is probably feeling pretty poorly
    I never want to eat when I am ill
     
  10. Dutchman

    Dutchman Registered User

    May 26, 2017
    442
    Male
    Devon
    Well I’ve done it. I’ve decided to go for the care home option. Reason being is that this morning I tried to clean up and dress my wife and it needed two people and there were others that could be called on. Try that at home with just me and one other. I’ve also just got the contract and first bill . I knew it was coming but wow!! Still a shock. Savings goodbye.

    I think behind all this, when I look at what my wife has become , that there’s a distinct possibility she won’t make it. Early days I know but I don’t know why but I just feel it.
     
  11. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,093
    Yorkshire
    strangely @Dutchman you may now find you are able to settle a little
    I think finding a way to accept what has happened can be as difficult as making the decision to arrange residential care
    you have realised for yourself that care in your home sadly just isn't viable for either of you ... and you also have seen that the staff are able to care for your wife
    I hope you can have a good night's sleep
    then, as my dad used to say, just put one foot in front of the other and take it all one step at a time
    best wishes to the both of you
     
  12. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,947
    Female
    Dundee
    I hope you've managed to get some rest overnight @Dutchman.

    It must be hard coming to that realisation but now that you have I hope you are able to settle to a routine in terms of visiting. I hope that being with your wife, holding her hand , talking to her and sharing time together will be a comfort for both of you.
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,895
    Kent
    This is such a terrible feeling @Dutchman.

    I hope you are wrong and you and your wife will still have some quality time left now you have realised it is not possible for you to meet her needs alone.
     
  14. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    257
    Central Scotland
    Yesterday was a big day for us too. 6 week review at Care Home with Social Worker, Key worker, Manager and Me. OH sound asleep in his chair. The home are very happy and feel OH has settled well. They feel it is time for me to try taking OH out of the home which I have been reluctant/scared to do in case he refuses to return. They think he will be fine.

    Like you I had to sign the 'contract' agreeing to the terms and conditions and to paying the home. By coincidence, the first bill for the Home arrived in the post in the morning it was £££££ because it covered the first 6 weeks. With it was the bill for the 2 weeks respite he had back in April - more ££££. I have set up a Direct Debit for future payments from the account where OH's savings and income go and see that at this rate we will be self funding for approx 18 months. I realised that if the charges rise money will run out sooner but that is not worth worrying about as inevitably it will all be gone, sooner or later, and the Council will take over the payments.

    I'm content that he is where he needs to be, but felt like a traitor signing away his freedom. Was also a shock when our Social Worker said goodbye as we are no longer on her caseload. A day of very mixed emotions.
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,895
    Kent
    I don`t know why `they` make these suggestions. I would prefer the care home staff to take residents out first to monitor their reactions. It is too big a responsibility and too emotional for spouses or adult children and the person with dementia could pick up on their anxiety.

    I had planned to take my husband down to the seafront in his wheelchair but he went into residential care in February so we had to wait for the weather to improve.
    The first time I took my husband out, it was only into the garden of the care home. By then it was August and the home was having a Garden Party.
    He told me he didn`t feel safe and we had to go indoors after about 10 minutes.


    I know many people have successful outings but no one knows how `fine` they will be until it is trialled.
     
  16. canary

    canary Registered User

    Feb 25, 2014
    10,809
    Female
    South coast
    That is absolutely true,
    Im one of the people who could take mum out for outings. We used to do simle things like going along the seafront, watching the ducks in the park, garden centres and cafes and so long as I took her back before she got too tired all was well.

    The first time I took her out I got a friend of hers to come out too and I only went to a cafe which was literally about 100yrds down the road. The carers said that if there were problems they would come out and help, but there wernt any problems. Is there somewhere similar where you could go for a short time and maybe the carers would be willing to be "on call" in case of problems?
     
  17. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    873
    Male
    Newcastle
    My wife expresses a desire to go out but often wants to go straight back when we do. Both family and carers have walked with her a few times to a local cafe but she will not go in if she takes against the other customers. When she does go in, she eats her cake and drinks her coffee very quickly then wants to go. Her world has shrunk. Only her mainly Invisible son has tried to take her any further. She was sick in his car and he hasn't been back since. My wife has always gone back willingly but there is always a worry that she won't.

    It would be a good idea if the care staff could try a short outing or two to see how it goes @Wifenotcarer. Don't feel obliged to do it yourself.
     
  18. Dutchman

    Dutchman Registered User

    May 26, 2017
    442
    Male
    Devon
    chman, post: 1657737, member: 66269"]Well I’ve done it. I’ve decided to go for the care home option. Reason being is that this morning I tried to clean up and dress my wife and it needed two people and there were others that could be called on. Try that at home with just me and one other. I’ve also just got the contract and first bill . I knew it was coming but wow!! Still a shock. Savings goodbye.

    I think behind all this, when I look at what my wife has become , that there’s a distinct possibility she won’t make it. Early days I know but I don’t know why but I just feel it.[/QUOTE]
    my wife is now over the urine infection and seems a lot better. She’s eating more and drinking more. Because she’s more aware now she’s reverting back to wanting to get out of the home. We had to really restrain her and divert her attention while I did some paperwork in the office.

    Later we went to her room and had a close time just lying hold hands and it’s a time when I don’t feel upset and have all those feels of dread and the lurching in the stomach. My wife says I really love you and it breaks my heart.

    Why is it that when I eventually go I feel that I’m abandoning her. I can escape but she’s still a prisoner. It’s awful and I feel selfish. Will these feelings ever go away.

    Now my doctor tells me that my family should get more involved even though they live miles away and have children, schools, jobs etc. How can they? but I do feel a bit abandoned myself now really feel on my own now the initial rush of sympathy and support when my wife first went in has gone of the boil. I suppose this happens but I feel hurt. I know they still care but now it’s my problem and I have to get on with it I suppose.

    I have all the feeling of extreme anxiety. Painful arms, lurching stomach, tiredness. I still feel guilty and feel that none of my family really understands. I got taken out to a restaurant last night by my brother in law and partner and they’re talking about their life and all I can think about is my wife stuck in the home. I want them to talk about me and help me and understand what I’m going through. It’s so easy for others to push it to one side and think about their lives when all I think about, apart from the time I’ve taken my pills and fallen asleep, is my wife.

    This situation is unmanageable emotionally because I have someone who’s lost to me but not gone. She drifting away I’ve got to cope with this all on my own back to an empty house each time. It’s beyond cruel.
     
  19. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,947
    Female
    Dundee
    Good morning @Dutchman.

    I'm glad your wife is over the infection but sorry that things are still so hard for you. Forgive me if someone has suggested this before but I wondered if you have considered counselling. Your GP should be able to refer you for this. It might help to have some sessions where you could talk to someone face to face about how you are feeling.
     
  20. Dutchman

    Dutchman Registered User

    May 26, 2017
    442
    Male
    Devon
    Yes I’m trying counselling but after two sessions nothing has made much difference. She just sits listening to me but nothing has shifted. I still feel wretched and hopelessly emotional about losing my wife, guilty I’ve left her there, I feel abandoned myself and unable to connect with any positive way forward. I know it’s early days but I cannot see how length of time will change anything.

    My lovely house means nothing to me now because my wife will never walk on these carpets again, never sleep in our bed, never walk in the garden. What’s the point of it all when she’s not here. She’s dead but not dead and I’m not sure how much longer I can go on. And if I don’t go on then there’s no one to support here when she’s in the home.
     

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