Dementia’s journey

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

  1. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,292
    No, you don't have to use up all of your savings before the local authority will contribute to care home fees. If savings drop below £23,250 they may still contribute, depending on income:

    In England, there are two capital threshold limits:

    • Upper threshold (limit) – If the financial assessment shows that your capital is above the upper threshold (£23,250), you will be expected to pay all your own care home fees.
    • Lower threshold – If your capital is below the lower threshold (£14,250), the local authority will pay some of your care home fees
    If your capital is under the lower threshold, then your income will be used to pay for your care, provided you are left with a minimum amount, known as a ‘personal expenses allowance’ (PEA).

    If your capital is between the two thresholds, the local authority may start to contribute towards the care home fees, depending on your income. You must still be left with your PEA. A person with assets between the two capital limits will pay what they can afford from their income, plus a means-tested contribution from their assets (calculated as £1 per week for every £250 of capital between the capital limits).
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,599
    @Dutchman i did just an hour of pruning in the garden - oh my it was therapeutic! Bit of a test then back out to clear up all the pruning into bags ready for the tip.

    For me breaking everything down into little hour by hour bits helps sort out my day & my head. It just helps me feel things are more manageable rather than blitzing away & then being exhausted & frazzled after trying to achieve too much. After 3 hours this week if pruning & weeding ( not including the breaks & tidying up bit!) my jungle of a garden has pockets of tidiness, so I live in hope - as I can see the small differences I have made!
    Actually they seem big differences to me & make me feel that little bit like I am getting on top of life a bit more.

    Take care & little steps my friend
    x
     
  3. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    395
    Sheffield
    Hello Dutchman, my OH is in a care home and he always wants to come home especially if I go alone to visit. It’s so upsetting as I would love for him to come home but I know I’ll struggle to cope with him as he can be aggressive and paranoid. If I speak to a man in the home who likes to chat he gets angry accusing me of having an affair with him.

    I wish I could take him out for a walk and coffee but I don’t think he would go back. He gets upset because he can never remember where his room is. I always tAke him to it but it’s up to the next floor in the lift and that confuses him.
    If he comes home I’m worried he could be very angry and aggressive with me.
     
  4. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    I’m so tired of all this. I’m always fed up and stressed. I went to a hypnotherapist this morning who says he’ll be pleased to work with me. So that was that. Who knows, it might prove beneficial. I’ll try anything. Counselling isn’t working and very expensive. And I’m taking Prozac.

    Came home I’m physically tired. So I lie on the sofa trying to lighten the feelings of dread and then I remember a Memory cafe nearby so I go there and meet a guy in almost the same boat as me only his wife is bed ridden and been in the nursing home for 6 months. It just seems he did loads more at home for his wife than I ever did but her progress downwards was slower. He goes everyday to the home and spends hours there, feeding her, keeping her company.

    When I go to see Bridget she just wants to get out. As she hasn’t settled yet I’m reluctant in going. When I don’t go I imagine her upset and I don’t want to phone in case they tell me she’s upset.

    Bridget was quickly changing. One year ago neglecting her hygiene. Then I’m not her husband, then wanting desperately to go somewhere. No washing, changing clothes, no appreciation of my feelings, no real relationship

    But, if only I’d just stepped back from the situation, had others indoors with me to help to advise me on the day she went away. I had to make the decision on my own . I know the dementia would have progressed anyway but I’m consumed by the thought that I just shoved her into the home because it was convenient. I had to stop the terrible behaviour. And now she’s there there’s no going back.

    She said to me yesterday...I wish it was normal..meaning that she wished she could be somewhere else away doing normal things. Talk about break your heart!

    I know it would be beneficial to get out the house more but I’ve no motivation. Just getting out of bed in the morning is a struggle.

    Anyway, sorry that was so long and repeated past thoughts but telling my forum friends helps
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,430
    East of England
    It does indeed and without the outlet of being able to put it all down I think I would have burst with anguish and pain for his plight. Somehow it seems to relieve the pressure even if it all builds up again. I sense a little bit of improvement in your wellbeing but it’s an emotional roller coaster of a life. Keep letting it all out and trying to maintain your own mental health. .
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,248
    DUtchman, you went through hell before Bridget went away. You would have broken. I did. I am glad you didn't. Hypnotherapy could help you relax a bit, even a bit would be good. Your job is to try to get through this, reading and posting is good, getting out of the house is good. This is another kind of endurance You did an amazing job with your wife and now it is time for others to take care of her.
    P@
     
  7. kindred

    kindred Registered User

    Apr 8, 2018
    2,248
    SOrry, that sent before I was ready.
    Please ask the carers to tell you if she does have settled times at the home.
    I know this breaks your heart. You are such a good man. Warmest, Kindred
     
  8. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    Does anyone or has anyone experience those strange feelings in the arms when really stressed and unhappy as I am now.

    I tried to explain to the hypnotherapist yesterday. It’s like a sharp tingling, like a burning sensation in the forearm and sometime in my legs. It comes goes but the more I get anxious over the whole situation the more it happens.
    None of my family call me that often now. Seems they think that now mum is in a home everything is as it is and dads just got to cope with it. I’m quite upset by it though. I feel abandoned by them. A phone call would be nice.

    But I can’t force them to be interested. And they live miles away. I just seems that now the dust has settled somewhat people are getting on with their own lives and leaving me to get on with mine.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,709
    Female
    South coast
    When I get stressed I get awful tension in my muscles and sometimes they are really contracted (not for nothing it is described as being "uptight"!) and Im wondering whether this is the sensation you are feeling.
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,599
    At the home where my Dad is, a lady’s husband comes in everyday; he lovingly comb her hair & sits with her meanwhile there is no response. She’s hoisted into chairs & seems to be in her own world.

    Until... one day I was sat with Dad opposite on a sofa, & in came this lady’s husband, the gentleman greeted us all & got out his comb to do her hair.
    Sitting lower we could see the expression change in her face as he combed her hair; she hated the experience & rolled her eyes at us & grimaced!

    The carers tell me that she doesn’t like her hair to be messed & detests combs & cant vocalise that !

    Guess what I’m saying is that it’s not always as it seems. We see what we want to see.

    You have done everything you could have done to keep your wife in your home. In your heart of hearts you know this. I constantly compare myself to others & find myself lacking in my own eyes; but you did what was best for your wife.
    The fact that what it is best for your wife, isn’t what you would want or choose in your married life makes that decision all the more harder.

    To truly love someone & make the hard choices so many on here make is a testament to the unconditional love & depth of care & compassion you have.
    Whatever you choose is not an easy choice; but putting another needs above what you want or desire is a heartbreaking decision.
    So be kind to yourself, you have done the right thing. Your loved one is safe & loved by you.
     
  11. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    I’m up now with a cup tea and just spoken to my daughter who seems the only one of our family that understands and gets what I’m going through. They are visiting next weekend.
    The pains have gone for the moment. It’s like a sharpness, tenderness. No, here they come again.

    I’m lost really, I wander around the town with no purpose. I get fed up telling people about my wife. I rely on films to get me through the evening. No one contacts me now and I feel so terribly alone and I’ve no motivation to do anything about it.
    The forum is my lifeline as only you know what it’s like to be like this
    I feel like just going back to bed really but that wouldn’t help.
     
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,599
    No I totally understand, dreading what each day might bring; but I set myself silly achievable goals every day!
    Yesterday’s was bleach the kitchen, tidy the dining room table & get my washing done!

    Yep I’m living the high life here!

    Today I will go & get food shopping, find a new book that’s not “ chick lit” ( my go to comfort zone!), make some soup & freeze what I can’t eat ! Change my bedding!

    Mundane I know but I get small amounts of pleasure from achieving my goals!

    Tonight “Strictly “ is on & I fully intend to watch & be on the Strictly forum here & comment!
    I have never watched it so will be totally outside my comfort zone..... I pity the other people on the Strictly thread!!!
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    404
    Male
    Devon
    Thanks for those kind words.
    I suppose one of my main problems with all this is that at the time during her last week at home her dementia behaviour was so uncontrollably and it had been going on for so long and because no one could alter it I was glad at the time to be rid of it by her being taken into a home. I feel I did this for my sake not hers. Another selfish action.

    I know she’s better physically and possibly mentally at the home but I can’t help but wonder if I jumped the gun in having her taken away.
    Oh I don’t know. It’s all a mess really and I cannot sort it all out in my head
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,702
    Kent
    Hello @Dutchman

    You really are struggling with a mountain of grief aren`t you?

    These things cannot be shrugged off, we work through them as best we can.

    While you are really suffering in your own world the rest of the world even family and friends go about their business. They are sympathetic and think they are understanding but there is a limit to how understanding they can be.

    Your heartache is your heartache.

    Is there any chance you would consider a carers support group if there is one in your area. You could meet with other carers and hopefully find something in common with some of them.

    If you search this link there might be somewhere for you to go.

    https://www.alzheimers.org.uk/get-support
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,599
    No you did what was best for your wife. This is just a horrible part of grieving for the personality changes your wife is experiencing. Easier to blame oneself than blame a disease that’s deprived you of your wife.
    Being sad & angry is emotionally draining but part of a grieving process. For those with loved ones with dementia it’s a continuing grieving process as more of our loved ones are lost to this disease.

    I am determined that my experiences of dementia will not define me as a person. I will not be taken & consumed by it as a bystander. Dementia takes & destroys so much, I will be my loved ones legacy.
     
  16. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,599
    I’m thinking about this option as well.
    x
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,702
    Kent
    The support group was my salvation at one time, alongside Dementia Talking Point. Two places where I could go where people understood what was happening in my life.
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,599
    I will look into this it’s a possibility, again a sign of a more positive attitude from me!
     
  19. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,702
    Kent
    Please let us know how you get on. It helps others try to find strategies for coping.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,599
    I will between this & @nitram leading me astray with Aldi inflatables.....
     

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