Friday, 13 January 2017

Having to Watch the Daily Deterioration

is worse than anything else. I can no longer bear it. A man whose fingers plucked and stroked and coaxed his instrument to make heavenly music now takes hours over doing up a button in a cardigan or push a piece of paper into a non-existent pocket.  A man who rushed about London’s streets to the manner born - literally - now doesn’t recognise his own home. “You can drive, can’t you?” he asks, “can we go home now?”

During the prolonged festive season there were no surgeries open and I couldn’t ask for help. It wouldn’t have been much use, because there is no help. But we always think there must be something we can do, don’t we.

On the first working day after the holidays his GP rang. “How is J, how do you find him in himself?” Stupid question, I thought,  but just answered wth “Hmm?” And then she said “And how are you?” Ditto, stupid question. Again I answered “Hmm?” Only then did she come to the point. “I am looking at J’s blood test findings, they're actually not good. Not that we can necessarily do anything about any of it.” “Yes,” I said, “we’ve realised that.” “Particularly the kidney function. That’s gone right down form 20% to 16% now. And it won’t get any better."

She was very nice about it, voice oozing bedside manner - in a good way - sympathy and compassion clearly audible. I felt I had to reassure her. “Tell me,” I said, “I won’t collapse on your shoulder.” I only collapse in private. Or maybe here, where nobody knows me.

“It’s now a question of quality over quantity”, she finally admitted. "Looking at his medication, there are a few things we can cut; just leave the ones which will ease him. None of those blood tests, like INR or routine annuals now. It’s important that he enjoys what he can and forgets about everything else.”

So, it’s official, but then we knew that. Since just before Christmas the dementia has enveloped all of him; almost nothing makes sense. For whole evenings he is obsessed with one subject, we’ve had hospitals, elections to become Archbishop of Canterbury (him!), chairs and whether to take them home with us, car races and crashes (mine), sanitary ware china, and over and over again urgent request to take him to work, because he’s on for Wagner or a ballet, or a concert at the Albert Hall. “Where are my shoes, I need to go.”

His kidneys are slowly poisoning what little understanding of reality he still has. A younger man would receive dialysis, an old man couldn’t survive the treatment.

I can no longer bear it. It breaks my heart. Yet, at the same time, I can understand that there are people who lose their patience and shout, Or worse. I admit to having stamped my foot and screamed at him when I tried for the umpteenth time to make him understand that he needed me to take him to the bathroom to avoid accidents.

The assessment social worker has been. One day when Beloved was particularly agitated, furious that I stopped him going to work and ready to swear at me, and I could barely keep him in his chair, I rang the doctor, demanding to know which of the many bodies in existence could help me, there and then.
Some hope.

Emergency admittance to a care home is never a good idea, these decisions need cool heads and careful consideration. So I gave in. Beloved had fallen asleep by then and given up going to work. But Doctor Wendy got off her comfortable chair and raised Cain. Cain came, closely followed by more social workers, district nurses, a dementia nurse and a dementia specialist doctor. The assessment social worker instantly granted me extra carers during the week and all of them promised to help me find a solution, i.e, a care home for Beloved, either on a respite basis or permanently. The dementia doctor doubted that I’d ever be able to cope with him again and for the sake of my own health and sanity recommended that I make enquiries immediately.

And then the old bugger goes to bed like a lamb and smiles at me and says: “Can I have a kiss?"


51 comments:

  1. There are no words that will provide relief for you. Just wishing you strength to survive.

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  2. Tears.
    With and for you both.
    Heartfelt hugs and oceans of caring are flowing your way.

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  3. Oh, the agony of it all. Praying for daily strength.

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  4. Tears here too ... and relief that you are now being helped to help your beloved.
    Thank you for sharing your journey with us Friko.

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  5. So, so sorry. Keep telling the story.

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  6. Thank you for turning your truth and skill to this story we are privileged and frightened to share. Tears, prayers and caring flow to you. If you can, please do continue sharing.

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  7. My heart breaks for you. I wish you peace and rest.

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  8. Life is really jerked around form hour to hour. My friend was going to kick his wife out of the house because he thought she was somebody else. I hope all goes well to move beloved.

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  9. Life is really jerked around form hour to hour. My friend was going to kick his wife out of the house because he thought she was somebody else. I hope all goes well to move beloved.

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  10. Goodness, your doctor is effective! And just as well.
    But what a heartbreaking bedtime...

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  11. It's tough; reminds me of when my dad was dying. My heart goes out to you, and your Beloved. May you find strength, and peace.

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  12. Oh, that last line brought a welling in the eyes.

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  13. Hello again, dear Friko.

    You may feel that you are alone over there. (It's a long way from Texas to London.)
    But let me assure you that my heart is right there with you. I am so glad that you
    posted again so I know more about what is going on. You have explained the reason for the dementia, and why there is nothing to be done. It's good that you were able to get help flowing your way. As I understand it, you will have a substantial number of extra hands to help with the physical demands, and extra heads to help with the big decision about where Beloved should reside. Excellent news.

    Please don't be too hard on yourself for "losing your cool" on occasion. We are only
    human ourselves. We are handling a situation for which we have had no preparation, no training. It is difficult.

    My story is not nearly as distressing a yours, but I understand where you are coming from. My "Old Man" (means 'Beloved' to me!!) had back surgery three years ago. Bad
    things happened. Doctors made mistakes. Since then, there has been little peace at our house. My guy has always been a workaholic. Cannot sit. Feels worthless if he isn't busy at something with his hands. Nevermind that the pain he suffers is
    way beyond a 10 on the scale. His trying to handle the pain, plus the drugs he takes to help alleviate some of it, are taking a toll on his mind. Yes. I have yelled at him. More than once. When he has to be told the same thing over and over.
    When he doesn't remember something that happened a few minutes ago. Fifty-three years of marriage, and he seems a stranger. After I yell, the guilt hits me. He does not deserve it. He is such a sweet Old Man. Very much like a child. I promise myself to try harder to be patient. Then I think, "This is a different
    world. A world I don't know or understand. I will do my best, but I have to cut
    myself some slack, too."

    Can you please do the same? Don't put too much blame on yourself. You are doing your very best. I KNOW he got the kiss he requested.

    Our security is in our love for each other. Yours and your Beloved's. And mine and
    my Old Man's. Nothing on this Earth can take that from us. The scene may change.
    One of us may leave the room. But our love isn't going anywhere. In that,
    we are blessed indeed.

    Please, please! Do keep talking to us here. We care.

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    Replies
    1. This was a beautiful and heartfelt post. Thanks for sharing.

      "Our love isn't going anywhere."

      I am truly sorry for what you and Friko are going through.

      Love, hugs & prayers ~ FlowerLady

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  14. There are no words. My heart goes out to you. As I read this I remembered the lovely afternoon walk and tea in your conservatory with you and your Beloved.
    I am so sorry that you are in this very hard time.

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  15. We live for those shared moments of intimacies, for those smiles, for those meetings of souls in the now, beyond who we were or what we used to be. At least I did. With the unexpected, sudden passing of my Mom, my Dad was placed in a care facility on a moment's notice and providence could not have provided better for him. Your beloved is incredibly fortunate to have you to look after his well being. Institutional care is made so much better by having at least one loving person overlooking the care. Maybe his restlessness can be addressed some with pharmaceuticals, but maybe it is an inner landscape that deserves exploration as it emerges, deserves attention and maybe requires some healing, some processing, some letting go. I hope you can find your curiosity to explore his altered states and marvel at the amazing, complexity that makes us into such multifaceted human beings. Please keep on sharing your experiences that no doubt benefit and touch us all.

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  17. No one is ever prepared for what goes on at that stage of life. I lost my mom to kidney disease and the worst was watching her mind drift away day by day. I am so sorry for you and your beloved. I do hope that the help you get will alleviate some of your stress.

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  18. Dear Friko - oh how I feel for you ... you are having to endure the worst - and stand by and watch, or just attempt to be prescient ... Just wonderful to read your last sentence - those are the times you'll remember. My thoughts and love to you both - Hilary

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  19. This is heartbreaking and frightening at the same time. Clearly those of your readers who have experienced similar circumstances are in a much better position to say something useful, so I won't even try. Just letting you know that I, too, care.

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  20. I am so sorry. Life seems to get more difficult as we age. People will say, "well, you'll always have all the good memories and you will....in time. In the long run, you and your beloved have been fortunate to experience a long love and happiness.....many don't.

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  21. Oh dearest Friko. Your sharing with us here, brings you lots of love, encouragement, well wishes and prayers. We may not know you personally, but you are part of our blogging 'family, and as everyone has said, we care.

    What you are going through is heart breaking and then to read your last sentence where your Beloved asked for a kiss. A gift in the midst of turmoil.

    Continued love, hugs & prayers ~ FlowerLady

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  22. I have had some experience with dementia in my family. But the speed with with your Beloved has been felled is breathtaking. I do so hope for you and for him that you are able to find suitable and appropriate care for him quickly. You are doing remarkably well.

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  23. You are fortunate you don't live in the US, where you would still be waiting for an assessment. I have a friend who cannot even get someone to come in and help her for a few hours, and she cannot leave him alone. My heart goes out to you and Beloved. Sending you my love and concern. :-(

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  24. My heart aches for you, Friko. I'm so glad that you have people around you now who can help with decision-making. And thank goodness for honest physicians, who aren't afraid to talk truth with people. I admit I'm shocked at how quickly the decline has happened -- I can only imagine how distressing it is. Or perhaps I can't. You're in my thoughts, every day.

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  25. So sorry for what you are going through. Be kind to yourself. Find courage and strength to do the right thing. But most of all, be kind to yourself.

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  26. Dear Friko, may I add my love and admiration for you to what others have already written much more eloquently. xo

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  27. I wish and pray and send forth wishes for your strength and for you to have help, in any and every way possible. You are surely exhausted in every way, Friko, and I'm sure sleep is never complete.

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  28. So trying for you Friko, but nice to get a small glimpse of the old him at the end of the day...

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  29. Good grief. Yes, they want a bedtime kiss, just like the old days. Sad to hear you are going through this.

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  30. So sorry things have got to this stage, but thank goodness your GP is fighting your corner and there is at least some additional professional support.

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  31. Dearest Friko, When I went through this with my Father I finally realised that, for me, the worst part was that there was no good outcome for which to hope. He did spend his last long months in a specialized Dementia/Alzheimer's care facility. The careers were angels. I saw many goodnight kisses, as well as Hello and other random kisses, given to the residents. They also had a wonderful chef and kitchen staff. My Father would forget that he'd had his dessert.They'd bring him another. Ice Cream happiness outweighs diabetic restraint at that stage.
    One thing we learned too late was that an order to take no extreme measures to resuscitate, does not cover an instruction to withhold antibiotics in case of bronchitis or pneumonia. What could have been a peaceful exit, lasted on and on after that. Please get them to spell out the exact details of these options and don't be afraid to transfer some of your burden to trained professionals. There are wonderful people out there.

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  32. Good for Dr. Wendy. Listen to her. (I know you are). And remember, if you end up venting at him in frustration, chances are he won't remember an hour later. Not that you should do that as your norm, but if you do, don't get the guilts. Sorrow is tough enough without the guilts.

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  33. I'm crying over that last line. Actually, the entire situation is so heartbreaking. Thanks goodness you and Dr. Wendy raised Cain. Oh Friko. This all so very sad. I'm grateful in someways he doesn't have to fully realize this terrible decline, but if only you didn't have to experience it. Hope and help appear to be on the way.

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  34. I am so glad they sent people out right away! I really hope that they can find a good place for him that is close enough for you to visit him frequently. You can't take care of him by yourself. Having people there will help, but if he was in a care facility you could at least sleep at night and not be afraid he will wander off. One person can't watch someone 24/7 and they do get to where they need that much attention. Your heart must feel like it is brittle and bare. I collapse and cry alone, too. *love and hugs*

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  35. Oh, my heart goes out to you! I can only imagine what a muddle of emotions must course through you from one unpredictable moment to another. My first hand experience with individuals who have your husband's medical issues has been in facility settings. Can appreciate how staff has had to assist them and loving family members/friends of the person cope, even becoming frustrated even in that situation. I'm glad you're receiving some assistance relative to what living situation might be best for your husband now. My dear, I know you care much for your husband, but you must care for yourself, too. You may need to give serious consideration to what is best for you now. My caring thoughts will be with you.

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  36. It is good, at least, that you have been able to marshall the carers, and may they be forthright, decent, and serve you both well. You are both in our thoughts, with much love.

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  37. We try to reach out with words to comfort or support, but only come up with lame and useless ones.
    Get help with the care taking; and let others provide support.

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  38. I remember loosing my patience with my mother and how horrible I felt afterwards. My heart goes out to you. Take it one day at a time.

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  39. The last line says it all. A kiss. And that is what makes this ever so much harder. Hugs to you. You are being brave.
    Please continue to share.

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  40. Yes, asking for a kiss, makes it even harder.
    My prayers go out to you..

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  41. life is so different now. so sudden it seems, so swift. so irreversible. and frustrating. and hard. and yes sometimes you yell at him but it's understandable. we are all human so please have some compassion for yourself. as much as we may want to do or care for someone, it is not always within our abilities. we must rely on the care and help of others. even so you are not abandoning your Beloved.

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  42. I hope you can have compassion and concern for yourself as well as beloved and let the carers do what they can for you both. Sending hugs!

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  43. It is so hard. So hard. I know everyone here had tragedy slide through their lives. I know many of them, and their sorrows. You go through it, then you know the way to the end another time, and can offer support to the next novitiate. Take care of yourself.

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  44. "Where are my shoes?"
    ...because he’s on for Wagner or a ballet, or a concert at the Albert Hall...

    He remembers the music? ...

    This is sooo sad...

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  45. friko, how i wish i could help. am i reading correctly that you will be seeking a nursing facility, what you call a care home? i hope you may find one that is as kind and caring as you will need to consider your beloved's transfer there. my mother finally entered such a program and it was a heartbreak until i realized she was alright and i was better able to handle her needs and my needs too. i know you have entered a new reality. i suspect there will be some pockets that are still bonding and real and i hope those touch your heart but do not bind it. take care of yourself. you deserve that.
    love
    kj

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  46. Dear Friko,
    As a long time follower of your so wise, courageous and unflinching sharing of your world I send heartfelt echoes of others' comments. Please feel supported and cradled yourself in this Alice like time of free-fall as you seek to gain peace for your beloved soulmate.

    On a practical note, can't help adding the speed his decline does warrant excluding possible reversibles (drug interactions,dehydration, electrolyte imbalance,urinary retention e.g) at play by experts, as acute toxic confusional states can play havoc with the ageing brain with no reserve. Sudden falls take a terrible toll as I know from own experience with my husband,and I can so relate to your present anguish....
    Sending love
    Chris ,70 ,trying to keep afloat in an aged farmhouse, with ailing husband, and sometimes too lively dog, SE Wales

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  47. Ah, Friko, thank you so much for sharing here. It gives those of us facing similar situations with loved ones a glimpse into ways of coping. Sending courage and hope and gratitude your way.

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  48. Friko, so sorry. So sad. You are very frightened, I know. My mother-in-law survived a similar time with her husband until a doctor told her that her heart could not handle the stress and lack of sleep and so we put the angry man in a facility. (He was always angry even before the aging.) Then when she became senile she lived with us. We got a day care person because we both worked. It was sad but sweet because she was so gentle and innocent in her belief that she was visiting her brother and waiting to go home. I got up in the middle of the night to take her to the bathroom or assure her when she had a dream she thought was real. BUT as much as I loved her, she was not my mother, and perhaps that made it easier. She go so ill with a minor stroke that she went to a rehabilitation facility and after months passed away. My own mother, to whom I was close in a very contentious way, got liver cancer and was much like your husband. Never in any pain she did become paranoid and thought her children were trying to trick her in some way. Such difficult times when we have NO CONTROl and losing patience makes us feel guilty an so small. I am so very sorry as you walked this well-trodden trail at this time in your life. Be strong. Be loving to yourself. Eat and use the respite times for something that reminds you the world is still beautiful even if it is not noticing your pain.

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  49. I forgot to ask...do you play CD or radio music for him? Does that help?

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