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
    412
    Male
    Devon
    The feeling of abandonment is strong. The Admiral nurse confirms that the home is the correct place for my wife but when I go in to see her she looks so unhappy and wonders why’s she’s there. She’s unable to explain her feeling, the words just don’t come out so it’s so frustrating for her.

    In staying home today, at least the awful feeling I’m feeling now is not added to by the stress I feel when I sit there in the home. Going to the doctors later for some advice about and I’m going to talk to the home about my wife’s various health issues. She’s been there 3 weeks now and everyone says it’s still early days but for me it’s one day of agony after another.

    The staff seem stretched all the time. Its a dementia home but I do wonder what skills they do have. I wonder sometimes if the home might give up on my wife and ask me to consider an alternative. they try their best with food and drink but my wife is always reluctant. What alternative? There’s no perfect solution unless you are very rich and can give your relative everything they and you desire.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,746
    Kent
    Is it possible something similar was experienced when your wife was in her own home with you @Dutchman.

    My husband was always searching for his `real` home and his `wife`.
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    I am pleased to read that you are going to the doctors, but please talk about how you are feeling. The care homes realise this is a transition time for the PWD & family, but the need for routine is paramount. Each day is structured with routine punctuated by food & drinks. It’s difficult to accept that others can achieve for your loved one what you were unable to.
    The qualifications required vary but be assured that the same bodies that asses the hospitals & doctors surgeries also asses care homes & nursing homes.

    A care home is a different environment- an alien one to most. Adjustment on how different is something that takes time.
    Your wife will settle, but her behaviour patterns when you are present visiting might always be the same. Believe me all care homes document very carefully each resident, how they react, what they eat & drink on a daily basis.

    Please try to focus today on your wellbeing
     
  4. Helly68

    Helly68 Registered User

    Mar 12, 2018
    465
    So sorry to hear you are having such a difficult time.
    In response to your earlier question, I often used to leave at a meal time and I would say that I was going home to make tea for my partner. This was well understood by my mother, who in happier times always made tea for my Dad at a specific time.
    In terms of "difficult behaviour" and wanting to leave, I think you might be surprised at how hard staff will try to make sure someone settles in. They have seen a lot of this before, especially when someone is settling in. My mother recently kicked another resident and whilst we all agree that this is regretable, there hasn't been any talk yet of her having to leave.

    I have also seen with other residents, an increase in anxiety when family members visit. It is heartbreaking for all concerned but hopefully when you wife feels better things may improve.

    I concur with others who suggest you focus on your own health - although this is very hard. I have had counselling and found it helpful, though you may have to try more than one counsellor - perhaps someone who has experience of dementia.
     
  5. Dutchman

    Dutchman Registered User

    May 26, 2017
    412
    Male
    Devon
    Thank you all for your kind replies. I know I need to look after myself so why did I stroke a cat today that scratched me and my hand hurts..stupid!!

    Anyway, I messaged my daughter yesterday after the bad time at the home and she explained today that she had her own child drama to deal with yesterday. Please understand she says. She’s very supportive and this all consuming stress and loss I’m feeling is making me forget what others are dealing with.

    So I’m feeling now that I’m bothering people and I’m half expected to deal with all this on my own and please keep a little bit quieter about it all. But in times of extreme stress I reach out to who I can. But I cannot afford a family upset over this.

    Anyone have advice on this tricky point? I’m going to stay at my daughters this week end and I’m thinking either one or two nights. This means I won’t see my wife obviously but will she really miss me anyway? I’m advised that restricting the visits could be beneficial to get my wife used to the home but I’m torn between staying or going back to see her. More decision, more stress, more heartache. Is there never an end to it?
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    #66 DesperateofDevon, Sep 10, 2019
    Last edited: Sep 10, 2019
    Go support your child & spend time with your grandchildren. Your wife is safe, & well looked after. Your daughter sounds like she needs her Dad. You have focused so much on your wife, now time to focus on the rest of the family.
    Take them out for a meal somewhere child/ teenager friendly. Talk to your grandchildren, take them out for a waffle & icecream maybe, take your daughter for a walk & visit a pub have a drink together. Your daughter has lost her Mum with dementia, don’t let dementia steal this precious time with your daughter.
    I speak from experience my children feel I have lost myself in sorting care for my parents. I’m not getting that time back, so need to make positive effort to repair & build on my relationship with them.

    You need to see the bigger picture, I’m sorry I don’t think you ( or I did) see the effect all this has on your family.

    Your family hate seeing you torn apart with all of this. They have not just lost a Mum / grandmother through dementia but also they have lost you, & they want you back. They need you.

    Both my parents now have dementia & I miss my Dad the most, I’d love to have some time with him. Even now 3 years on this dementia path I still want my Dad to be my Dad, & give me a big hug!
    I’m 51 with adult children.
     
  7. canary

    canary Registered User

    Feb 25, 2014
    10,713
    Female
    South coast
    I agree absolutely, !00% with @DesperateofDevon and she has expressed it so much better than I could.
    Your family needs you
    Your wife will be looked after.

    xx
     
  8. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,187
    Nottinghamshire
    As a daughter who had a mum in a carehome a dad who was grieving the loss of his wife and two teenage children who were dealing with important exams I can only agree with DesperateofDevon.

    We all felt the losing of my mum to dementia very keenly and helped to support each other.

    I felt my dad was going through the hardest time but I still had to be there for my children. Hopefully in time you'll find a way to support each other and find a new purpose in life.

    My dad became a very close part of my family when we lost my mum and the transition thru the trials of dementia was horrible. But in the end I think my dad found a new purpose in life with us.

    I hope you can find comfort in the rest of your family.
     
  9. Dutchman

    Dutchman Registered User

    May 26, 2017
    412
    Male
    Devon
    Wow. What replies. I know my wife will be taken care of and I’ve neglected the feelings of the family. I can’t come to terms that my wife is being lost to me and doesn’t need me as much...that’s what hurts so much. The home told me today that she eat well and has taken her meds. Relief.

    I suppose if I know she fairly content at the home I can stay away without too much anxiety.

    Thanks again
     
  10. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    You sound so much better in yourself @Dutchman. Acceptance of the new ‘normal’ your lovely wife now lives is going to take time not only for you but for your family to come to terms with. It’s a grieving process, but I found letting my family talk about happy memories, laughing at the good times has been a help. Often tears have followed but then laughter at a funny memory.
    The recent horror of your loved ones dementia is but a small part of their life. It shouldn’t become the defining memory of their life.
    This weekend with your daughter is the time for you to be a father,(father-in-law?)& grandfather. Keep yourself busy with having time with your family, do things outside of your comfort zone, maybe an activity - ice skating, trampolining, or even going to an American style diner, or an Escape room experience appropriate for your Grandchildren ( Harry Potter themed is always a big hit with all ages!) for a more less energetic activity. You don’t have to be the person you were when caring for your wife. It’s hard to envisage but this is a challenge that you need to give a chance. It might seem bonkers ( I have been told I’m nuts by my children! Followed by but we love you for it - as do all our friends!!) but I promise you will feel lighter of heart, & seeing smiles on loved ones faces & hearing laughter is infectious you just want to experience it again.
    Please keep posting, we all have dark days.
     
  11. Dutchman

    Dutchman Registered User

    May 26, 2017
    412
    Male
    Devon
    Many thanks for your reply. The home and me are taking my wife to the doctors this afternoon to check her mouth and hopefully some good news on the recent urine infection. I can’t get out of being there around sundowning time. Perhaps tomorrow I’ll make up for it.

    Isn’t it strange that the company of someone is a real basic need even when they’re being extremely difficult. I just thought at the time...get rid of it. Now I’m rid of it and she’s in the home I miss her company tremendously.

    Thanks once again
     
  12. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    Just be kind to yourself, your wife is safe /clean / fed & cares for. You need to do the same for you. Easier said than done ...

    Just an idea - night classes, learn a language or skill- also available during the daytime. Once a week it will get you out of the house & you will meet new people. Worth a thought perhaps
     
  13. Dutchman

    Dutchman Registered User

    May 26, 2017
    412
    Male
    Devon
    Hi there. I’m also in Devon.

    We went to the doctors today and while my wife was sitting there I spoke of the dementia journey of just over 3 years. She said that you could have been the perfect husband/carer, where we are now would have happened anyway. Don’t beat yourself up with feelings of guilt.

    Ok, that’s very rational and straightforward. But when I’m at home now looking at all the stuff that makes the home, and it’s my home not our home, and she’ll never come back, it just destroys having a sensible outlook on all of this. What am I supposed to do with everything at home? It’s all meaningless.

    What killed me today is as soon as I went in to the care home she said ‘where do you go’ , what am I supposed to say to that? It’s heartbreaking and it just piles guilt upon guilt.
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,713
    Female
    South coast
    Just say something vague like "Oh I'm around - you must have just missed me"
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    #75 DesperateofDevon, Sep 12, 2019
    Last edited: Sep 12, 2019
    Ok, hello neighbour which lovely part of Devon are you in?

    Why are you feeling guilty? No please bear with me I’m not being facetious. What specifically do you feel guilty about?
    The reason I ask is each feeling & reason of guilt has to be analysed... this sounds clinical & cold; but to understand the complex emotions you are experiencing the feelings of guilt need to be assessed properly.

    Me & others telling you that these emotions are a common experience among those who have had to make the choices you have had to make obviously isn’t going to help you move forward.

    You actually need to make an appointment with your own GP & ask for some mild anti depressants to help you through this emotive time. Your wife seems to have a better handle on the whole situation, that moment of clarity should be of great comfort to you. Not a reason to feel more guilt. Many on this forum would have loved to have had that moment, it should be treasured & of comfort.

    In your post you focus on your feelings, that’s understandable ( they are with you 24/7) but you haven’t said how all this is effecting your daughter, or grandchildren.
    All of this must be a terrible strain on her as well, she to will have conflicting emotions. Plus you said that she was having her own struggles, yet you haven’t said about the support you have given her; but you have said that you don’t feel that your family understand what you are going through.

    As a Mum & wife, I’m also a daughter of two parents who have dementia. Believe me it’s soul destroying, but as a mother I am still wanted by my adult children to be part of their lives; & have a maternal drive still to be a mother to them. Your wife still has that strong maternal need, & you as the father now needs to step up into that roll to some degree.

    Your wife asks where do you go? It’s a simple question but complex in it’s possible meaning, have you asked if if there is anything she would like you to get for her. Item of shopping? Face cream, make up, hand cream. These are things my Mum still asks for & loves the pick me up they bring. It might not be the question that you interpret, your own emotions are excluding any other possibility other than your first thought.

    Please don’t think I’m being abrupt or not understanding the grief you feel at this moment in time, but you have a family, grandchildren, a lovely home which was created with love by yourself & your wife, yet you only see the negative. How would your wife have responded to this before her dementia ?
    Cross, insulted & desperately wanting you to see the positives in life & what you achieved together. You married for better or worse, you’ve had the better & now sadly the worst has arrived. Bluntly - are you going to write off an obviously loving marriage & life time achievements because of dementia?

    Your daughter is struggling, I expect her husband/ partner/ friends are doing their best to help your daughter come to terms with everything; but where are you for her?

    Please let me put this in context.
    I’m adopted & my biological mother who I’d known & loved for 20 years became more unwell & passed away last year. Her husband wouldn’t see what was infront of him & when my biological Mum passed last year he didn’t deal with things well shall we say. Everything was done his way, no consideration for others emotions or feelings. His own children struggle with having a relationship with him. I did everything I could to support him, but at no point did he acknowledge my grief or emotions. His behaviour hasn’t changed infact it’s become more exaggerated., at no point does he consider his children or myself. Yes we are adults - but that was still my Mum the person who gave birth to me, loved me enough to carry me through pregnancy even though she knew she would have to give me up, the person who always loved me & wanted & hoped that one day I would find her; & I did so to lose the person who made the ultimate sacrifice for my benefit tears at your soul.
    I cannot for the love of me understand his rejection of not only his own children but myself., the only child who was adored by the woman he called his soulmate. No matter how much I’ve supported, cooked, cleaned, tidied, phoned, texted, messaged he has not reciprocated or attempted to. He says his life is over without his soul mate my biological Mum, but he has moved on; & now lives in another lady’s home with her. He previously talked about how was he meant to go on without my mum, what was the point, circling around & around spiralling in his grief, not appreciating others pain & loss, only his own.
    Now I don’t expect a return phone call to my messages, or him to think about anyone else other than himself. He’s not going to suddenly realise that being married means that you pick up the pieces of life your partner has dropped & continue where your loved one can no longer.

    Please don’t be like my biological mums husband. I can see it’s an easy path to fall into; but it’s your daughter, your grandchildren, a tangible part of your love of your wife.

    If my husband ever put my children on my through this experience I would be furious with him! Seriously I am writing a living will I feel that strongly about it. I have lived through my adoptive mothers parents dementia it tore her apart & she didn’t deal with it well. To then have to go through dementia in both adoptive parents & see the effect on my own children I have made hard decisions for my own future care & my husbands.

    As I said before , in previous posts- you are a Dad, a grandfather etc, many do not have that precious gift in their life.
    Stop looking at what you have lost only, look at also what you have & you will begin to see that’s the point of your lovely home, items in your home, it’s impregnated in the very paint & paper in a family home. It always will be a family home that is it’s history a history that you & your wife created. You cannot now rewrite that history, just find a path forward. That’s what you should be doing & what any loving person would want for their loved one.

    Apologies, if you feel this is insensitive.
    I hope somewhere in these words something might strike a note with you, & help you find your path forward.
     
  16. Dutchman

    Dutchman Registered User

    May 26, 2017
    412
    Male
    Devon
    Thanks so much. Now the home have informed me that although they do their best my wife has slapped out in frustration and hit one of the staff. I think I have to be mindful that the home may well ask me to alternative arrangements. Mental health team ringing home on Monday to discuss issues. What can I do ? They can alter her meds but what else. I’m becoming an all consuming worry person
     
  17. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hi @Dutchman
    the home staff have to let you know of any incidents, it doesn't mean that they will be asking for a move

    my dad did plenty of things, the manager sensibly involved the community psychiatric team who monitored dad, worked on his meds and worked with the home staff ... they were all brilliant and found ways to help him ... I saw this with other residents too ... the carers were remarkably resilient
     
  18. canary

    canary Registered User

    Feb 25, 2014
    10,713
    Female
    South coast
    My mum hit one of the carers with her walking stick when she first moved into her home and I was terrified that they would kick her out, but they didnt. They just said it was one of those things.
    As shedrech says - they are legally bound to tell you about any incidents and it doesnt necessarily mean anything..
     
  19. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    841
    Male
    Newcastle
    The way it was put to me @Dutchman was that the carers understand that it is the dementia not the person that is responsible for any disruptive actions. It is their responsibility as carers to try to help the person with whatever is troubling them and to seek a way of reducing it. I hope that this puts things into perspective and gives you some peace of mind.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,700
    I totally agree with @Shedrech @canary & @northumbrian_k the care home are trained for this behaviour & have a understanding of it being dementia generated behaviour.
    But it’s such a shock when it’s your loved one that does this. Please try not to worry about the phone call, it shows that the home are top of their game/ good at what they do.
    Try & enjoy your weekend with your daughter & have some fun. Laughter is a good balm for the soul. I try to find joy/ laughter each day as it brings not only happiness (however fleeting a moment) not only to myself but to others I encounter.
    The laughter yesterday of the school children passing by to attend an event locally made me smile & feel that lovely warm feeling; & I wish that for you.
    Take care neighbour
     

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