After the deluge?

Discussion in 'I have a partner with dementia' started by Joyt, Dec 8, 2018.

  1. Joyt

    Joyt Registered User

    Jun 30, 2018
    34
    My OH has gone into full time care now aged 65. I cared for him for some years and now find myself at the beginning of a new phase. I feel I have walked with him as far as we could go together and I have brought him to a place where he feels safe and cared for. However, im now having to rebuild my life. Are there other people who are in this place? A sort of widowhood with no closure.
     
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    It'll be 3 years in January since my wife was carted off in the cage in the back of a police van to the local hospital and sectioned (at 62 years old), and no, I haven't really moved on.
    Her shoes are still in the shoe rack, her coats still hung up next to mine in the hall, her books are still on the shelves she could walk back in here tomorrow and pick up right where she left off so I've no helpful advise to give other than don't do what I've done and go into "Miss Havisham Mode" do what others will suggest if you can, volunteer work, join clubs, move on.
    You sound like you've accepted the situation which means this may well work for you, I never have, I've always felt I could have done more so 3 years later, something around 1,000 visits so about 12,000 miles in the car I'm still going to keep doing it... so don't listen to me, take the advise from the ones who tell you to move on.
    On here it's called "midowhood" mid way to being a widow I guess, people can understand someone losing a partner but having a partner in care is somehow different. An often asked question is can someone in this situation start a new relationship, whole can of worms.
    You could join the local Am Dram Society, volunteer for a charity shop or put up a profile on a dating website, whatever you're comfortable with, but whatever you do you have to move on hard as that may be, Satis House ( it's a reference to Charles Dicken's Great Expectations) just isn't the way to go, trust me on that.
    K
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,466
    It is really tough for your age group, we had the early retirement years. We were unable to travel abroad until then so built up memories for our 80s. Physically we are weaker and I struggle with that.
    However it is much harder for you being in limbo, Kevini, in many ways.
    Your advice on here is so valuable.
    We are a strange group, so mixed yet with a common bond.

    Look after yourself, Alice
     
  4. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    1,478
    My husband is back in hospital for the second time in a month he is 71, he is waiting to be assessed by social services, so at the moment I don't know what will happen, will they say he needs to go into care?.
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    5,891
    Female
    Scotland
    That is a very good point. We are indeed a mixed group in ages, genders, backgrounds and problems. The only commonality is our concern with those affected by dementia whether those diagnosed or their carers. Possibly that's why the group is so useful because the experiences cover a wide range. No matter how good the medical professionals or social workers are they cannot match the advice of those who have travelled the journey before.
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    Thank you Kevini. I've been thinking a lot about your post. I think that an accumulation of shocks such as you had, especially when your wife was taken away in police van, and I had over the years with my OH may result in a kind of paralysis about moving on. My moving on could be seen as not moving on at all in that I am so often with OH in his nursing home. But I found a new life there in going back to my nursing roots and discovered I had a talent for working with people with severe dementia. So is this moving on or not? I feel I am still suffering the after effects of all the shocks I suffered while caring alone. Again, I think shocks make it harder for us to accept situations. 1000 visits is just amazing, a demonstration of loyalty and love, not solely about being unable to move on. We each cope in our own way, obviously. I have worked with people suffering from PTSD and the kind of shocks carers have faced have a lot of similarities.
    My dad was a very prominent man back in the day and he was the main carer for my mum with MS and people were always saying why don't you dump her in a hospital and MOVE ON. And do you know, HE DIDN'T WANT TO!!
    Hope you don't mind me saying this, Kevini. with warmest wishes, Geraldine (Kindred)
     
  7. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    254
    Hi Joyt. I am in the same position only a few months further down the line. My husband went into full time care at the end of July. My first two months or so I spent much of my time crying but now I am building a life of my own having joined art and craft clubs (which was a hobby put on hold for the last five or six years while caring for him) . I have made a lot of new friends at these clubs and although I visit him in the home most days, I juggle the craft meetings and visits so that I can do both. The evenings can still be difficult as I miss him but as I know I can go in and spend more quality time with him the next day they are now getting easier. Sometimes when I visit he’s not having a good day so I don’t stay so long that day but sometimes it’s good and I will stay several hours. I find that if I don’t try to be too rigid with my plans for the day I can relax and to begin to enjoy my life again with him or on my own. I hope it won’t be too long before you are able to enjoy some of your ‘me time’ and that your OH soon settles in his new home.
     
  8. Joyt

    Joyt Registered User

    Jun 30, 2018
    34
    Thank you for all your replies.
    I’d like to add a few thoughts. Many of the people who post in this forum are deep in the problems of caring for their partner with dementia and with all the horrors of the disease. At some point most pwd will go into full time care. I wonder what support we can collectively offer carers once this has happened. For me, I’ve had therapy to try to alleviate recurring nightmares and other symptoms associated with post traumatic stress disorder. I’m still not right and am struggling With coming to terms with loss. Sadly the NHS can’t offer bereavement counselling as my husband hasn’t died, (similarly Cruse) My original post was really asking how people begin to recover from the damage the disease has done to carers. As I read your posts on this and other threads I see that many of you seem to move to a new phase of caring. I feel I’m still too damaged to do that.
     
  9. marionq

    marionq Registered User

    Apr 24, 2013
    5,891
    Female
    Scotland
    At various points on the caring journey I have reached as low as I have ever been. The phases of dementia have tested me in ways I had never experienced and it troubles me that this continues for others. In the run up to diagnosis of Alzheimer's I won't pretend that all was well because there were question marks about my husband's behaviour and decisions long before that. The reality was worse than I could have imagined.

    We are now at the end of stage six and I know that could go on for a long time. Because my husband is much less active he is easier to look after in many ways but ironically it also means it is much harder to leave our home as he is so lame and unstable on his feet.

    Somewhere in the future his life will be over and like us all I wonder if I will have any life left when that occurs. As I look back at our life together I know I would do it again but this episode of dementia has spoiled what we had and I will be relieved when it is over.

    Good wishes to all.
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,437
    East of England
    This is a very resonant thread because it is for all age groups and severity of dementia. For my part, I feel that my life is over in any meaningful way because everything I do is concerned with his care. The PWD at home requires a lot of care from little to a lot, and if they go into a care home there are all the associated anxieties of grief, guilt, not to mention financial worries. So whatever you do you are caught in the dementia trap. I suppose it is possible to build a new life even while your partner is alive in a CH, but it would be a very strong person to be able to put it behind them and do that.
     
  11. Joyt

    Joyt Registered User

    Jun 30, 2018
    34
    Strong? Maybe just desperate.....
     
  12. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,437
    East of England
    I wasn’t quite sure what the right word for a person who can put all this behind them and build a new life when their partner is still living. Maybe there isn’t such a person? Maybe they just live in the old life with additions?
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,466
    I wonder if moving on is really moving in to the situation whatever it is and finding meaning in that?
    Finding some acceptance.
    What is moving on, to what? It seems to me that we can not really move on by moving back to who we were before, we have changed, the world has changed. So when people say move on are they really saying move on or sometimes are they saying move over, I cannot bear your pain?

    Kindred has shown, yes, the pain is real, the anguish is deep but she is embracing the day, polishing and adapting old skills. This life is not what we planned or actively chose, but it is what we have.

    I am reminded of the Island by Victoria Hislop. A dreaded place but lepers found a life there. A role and a meaning. Sometimes I feel we are the new lepers! People draw away too often as if it is catching.
    Holland have some better ideas, places where life is gentler, more supportive for dementia.
    I am having respite on here purely because my husband is asleep. I should get on but the present is good.
     
  14. Joyt

    Joyt Registered User

    Jun 30, 2018
    34
    I’m sorry I didn’t reply properly to your question and time has moved on so quickly. Have you had a resolution?
    My experience with social services is that they were kind and had been here plenty of times before, so they were the experts.
     
  15. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    1,478
    I have just read all your posts and am sitting here crying, I was going to visit my husband in hospital but have realised there is not a bus to the hospital today I didn't go yesterday as I woke up with back ache also the weather was awful, I know he won't know I haven't been but I will and will feel guilty all day. Lx
     
  16. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    Thank you so much for your kind words, Alice. You have said the key to it: a role and a meaning. I did not imagine I would move on to being a volunteer in a nursing home, and now they have asked me to think about a campaign to recruit other volunteers which is lovely. A role and a meaning. Caring for someone at home 24/7 is an honourable occupation but the price is too high. Moving on in life. I don't know. I write the wildlife notes for the local church magazine and that helps with meaning, I now run the little church group that once saved my life by reaching out to me when life with Keith was terribly dark. These are small things but they are a life. I am by no means recovered from my ordeal. I feel fear easily, find it hard to cope with the bureacratic incompetencies of life and am often in state of terror first thing in the morning, as I was when caring for Keith at home. I tell myself all this is normal bearing in mind what I went through.
    I would say the practicalities of moving on are choose a small activity, any one, go to the library if you have one once or twice a week, make it a habit. Habits become imperatives and this can give us a way to move on, little by little. I guess moving on means put your mind elsewhere.
    I would say, as mental health professional that there is something about the nature of dementia that is compelling and consuming to the normal mind and it is very very hard to get the mind off it.
    with love and best, Geraldinexxx
     
  17. AliceA

    AliceA Registered User

    May 27, 2016
    2,466
    I too have found kindness but so far no action. I am waiting on my husband having a needs assessment.
    I have had a Carers Assessment but although supportive, and I am very grateful for that there has been no practical help. I will chase them again.
    The answer is simple and cheap, the day centre bus to pick up over the county.
    It is these border lines, they are so foolish! We lived in the county concerned for many years, we slipped over four years ago for mutual family support.
    The border is a mile if that away, the facility we need one and a half miles away. Nothing meets the Care Home Day Centre, for price, location, integration and possible future respite of care. We have known people who spent there last years there so there is a reassurance.
    Thank you for you kind support, TP is keeping me sane, if I have ever been sane:):):)
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    2,466
    You are right with your advice. Small steps and habits. Part of the idea of day care was to form new habits and new routines. Give me time to look away from dementia issues.
    I do get a sense of meaning in caring as I once found meaning in raising children, my various jobs and study.
    I think there is a wider existence that the mere physical, the ripple of every action and attitude roll further than we can see.

    When we had transport we visited a few friendly cafes in town, the local bus, surgery and library gave interactions to prevent isolation.
    Once before I found my self on my own, I had to relearn how to do things as a 'married single'.
    We moved to a new area, then my husband's work did not end as expected, he lodged with family while I settled in and made roots. I went back to college, ending with a place offered at University.
    I do not regret not taking it, I chose to follow the plan of a shared retirement and we took on a charity project.
    The study had done the trick of boosting my confidence.
    I found ordering a meal out was a challenge, some places did not really want single people, I used to like a corner. It gave me a taste of how real single people can be treated. I had to do things normally left to him.

    I am not one for looking back, each phase is another volume of my life. My book shelf is groaning!
    Now I have a home study course waiting my attention. I think I should change it for a DIY bus kit.
    Perhaps a self drive one. I was anti this idea but am beginning to see the point!

    Take care, darling, you are doing such a great job. Xxx
     
  19. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    Thank you for lovely words but YOU HAVE TO TELL US WHAT THE HOME STUDY COURSE IS ABOUT!!!
    Gxx
     
  20. Joyt

    Joyt Registered User

    Jun 30, 2018
    34
    Do you have power of attorney for health for your husband or will social services call a “best interest” meeting? I was the latter and so eventually decisions about his welfare were taken out of my hands. To be honest that was a great relief and freed me from the constant fear that Is talked about here. The fear that something terrible was going to happen on my watch,
     

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