Tuesday 10 January 2017

It’s one thirty in the morning

and I’ve suddenly realised that I am completely alone. When my father lay dying I rushed over to Germany to take turns to do the  night watch in the hospital while mother did the day shift. We were together and she held on to me. When mother died I rushed over to be with her during her last weeks and when she'd gone Beloved came over immediately to support me and help with arrangements.

Now that Beloved, my husband, my best friend, my rock, the man I consulted on everything, with whom I made every decision, small or important, has  left me in all but body, I am truly alone, I want to ask him what to do but he cannot answer me any more. There has been a catastrophic change in him since  just before Christmas and the deterioration progresses at an alarming rate. It’s terrifying. Almost nothing makes sense to him and he makes no sense to me. He was obsessing about being in a hospital for most of the evening. Is he trying to tell me something?

Tomorrow some kind of assessment will be done in our house. I hope the person knows what she’s doing and is not just a pen pusher and penny pincher.

I’ll try to get some sleep now.

40 comments:

  1. I am sorry to read of this. How heartbreaking for you. I'll keep you in my thoughts. Sending hugs.

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  2. Oh Friko massive hugs. This is so heartbreaking and lonely for you. Keep writing we're listening and loving you.
    XO
    WWW

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  3. So sorry you're going through this Friko. It's got to be one of the most frightening things to deal with. Sending you love and encouragement. I always got the impression from your blog that you were a very strong character. He may have changed but you can still be strong. Wishing you the best....

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  4. This must be incredibly difficult and frightening. You must have careful faith in the person who does the assessment, ask lots of questions, make sure they know where you stand. They may also be able to recommend some respite options for you. I'm not sure what might be available near your village but it is always worth an ask. Sending strength across the pond...

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  5. I am so sorry, Friko. This must to be so frightening for you. I hope that the person who is coming by tomorrow will be of help. We, on blogger, care about you and wish there was some way that we could help.

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  6. I am so sad for you and wish I could let you know what is in my heart. I am sure that in the days ahead you will face many painful challenges, but also, I am sure that you are every bit as much his 'rock' has he has been yours. God bless you both, Friko.

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  7. Oh, dear Friko. Your first sentence hit me hard!!! That idea has hung with me my entire life----well, for more than 50 years. When I lived in a dorm during college years, I had a quotation pinned to my small board. It said, "There is nothing to escape from. There is nothing to escape to. Man is always alone."

    So many times, over the years, I have been haunted by that quotation. I know i had used scissors to cut it from some publication. I have tried countless times to discover who said it. I thought Emerson, but searched in vain. I think it has sort of helped me to always be aware that the time will come when I will be forced to accept the fact. That I am alone. Now, I still have MY Beloved. But I know the time is approaching when I won't have him. He is suffering greatly from physical problems. To be expected since he is nearing 84 years old.

    I think all we can do is be really grateful for the time we have had sharing our lives. Being loved, and loving, too. We can go back over happy times in our heads. A wonderful thing that is. Some people haven't known that joy.


    Somehow we have to look within ourselves and find the strength necessary to cope with whatever is our present state of affairs. You are a strong person. You can handle your future. You fit the group my grandson labels "thinkers." That thinking will help you. Take each day as it comes. Take care of your physical needs. Let any who offer be there for you.

    When you think about it-----here we go again!!!----we are ALL the same in that we are alone. So we are alone together. Know that we are feeling with you and for you. I only wish I could be physically near you. Hugs help so much.........







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    Replies
    1. Such a wise and deeply felt testimony. Thank you.

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    2. That's T.S. Eliot -
      "“What is hell? Hell is oneself.
      Hell is alone, the other figures in it
      Merely projections. There is nothing to escape from
      And nothing to escape to. One is always alone.”

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    3. Wow. So many years. Then, out of the blue, the answer to my question arrives. THANK YOU!!

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  8. Sending positive, hopeful thoughts your way.

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  9. i join your other friends here in saying i'm sorry. i know you have the strength and the heart. but having to see the loss bit by bit is maybe hardest of all.

    i want to tell you that you will be alright. i believe you will be alright
    love
    kj

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  10. Dear Friko, I do hope you are able to take some comfort in the collective good will of your readers. Perhaps you will have the strength to create a new plan for your beloved and yourself as you must become your Beloved's advocate.
    Thinking of your.
    Regards Janine

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  11. I am at a loss for words, because all my own positive attitude (as in "Es wird schon nicht so schlimm werden") does not hold up against a situation like yours - it is NOT going to get better, and I can only imagine how terrified and alone you feel now.
    So sorry.

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  12. auch ich bin in gedanken bei dir und wünsche dir, dass du einen guten weg findest, mit der neuen situation umzugehen. vielleicht hilft es dir, dich zu erinnern, welch schöne und bedeutungsvolle zeit du mit beloved verbracht hast. es soll dir kraft geben, nicht zu verzweifeln und zu tun, was zu tun ist. es wäre aber sicher wichtig, dir auch freude und wenigere gedanken zu gönnen, um dich zu entspannen. vielleicht findest du etwas, das du mit freude und gutem gewissen während des tages für dich tun kannst. es wird dir helfen, neue kraft zu schöpfen. und alleine bist du nicht. jeder ist mit jedem irgendwie verbunden... ein universales oder universelles bewusstsein, würde die wunderbare spirituelle lehrerin annette kaiser hier wohl sagen!

    https://www.youtube.com/watch?v=ZxVvp7jvgmw

    https://www.youtube.com/watch?v=51EF3wqOTN4

    alles gute! renée

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  13. Dear Friko - my thoughts are with you now and will be during this day and in the coming ones too. I also hope the 'assessor' is kind, compassionate and empathetic ... with love Hilary

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  14. Claudia said it best, I think. But you have the children—his and yours—and even though it's not the same relationship at all, they are still people who are concerned, who love him, who will help you, I hope. And you have friends. It's not the same, I know, but what it does mean is that you are not entirely alone. Much love, D.

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  15. Damn auto-correct. I meant Cloudia, of course.

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  16. Dearest Friko ~ I lost my dear husband 4 years ago, and the 4 months he was ill and going downhill before he left this planet were so very hard. The past few days I have really been feeling the loss greatly, so I truly relate to your feeling all alone.

    A few minutes ago I was reading in my Bible and read this verse, found in Joshua 1:9 ~ Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with you wherever you go. ~ This is just what I needed this morning and I pray that it may be a source of comfort to you also at this time.

    I pray that the lady who is coming will do you and your situation good for you and your Beloved.

    Love, hugs & prayers ~ FlowerLady

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  17. I wanted to comment frankly on your last post and I thought about it and thought about it and did not. I thought about writing a general blog post without mentioning names. I thought about emailing you privately. I thought about myself too, of course. Will I come across as brutal and harsh and you and your readers will hate me? Here goes and with a deep breath.

    No doubt you will have heard how dementia patients quickly deteriorate if they go into care, but what has happened in front of your eyes?

    The love of your life and your best friend has been battered and bruised and lost. While he is comforted by your presence, how long will that last? It will be hard for both of you, but, with some personal experience and a field where my partner worked for a couple of decades, it is surely time to consider professional institutional care. In such situations as you find yourself, 'never put me in one of those places', go out the window, as is that is where he will receive the best care. True, they are not always perfect places, but again, my partner's sister was a warden and in charge of such a place in the north east of England, and I was quite impressed by the level of care and the day to day stimulation of the residents.

    It is not all about you but what is best for him and can you really offer him the best care? You probably hate me now, so be it.

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  18. While I have not experienced dementia, my husband died from brain cancer and I saw a vital man deteriorate to a man incontinent and in diapers who could literally not move, in 5 months. And now I am alone. As another poster said, we end up alone. I do have a few friends and some family, but we are all ultimately alone inside our own head. But yet the commonality is that we are all in this life together. We are all experiencing it collectively. We all have bits and pieces of understanding and care for others and their plight. In that we are not alone. Take some comfort in realizing that. As I have gotten older and experienced death and loneliness, I feel this connection to humanity at large, that I never did before. I also feel those that have not had to struggle yet or may never, don't feel this connection. It's hard to explain...just know people care and you are never really alone in the deepest sense.

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  19. As hard and lonely and unsure that we are in the daylight, they take on an enormous presence at night. I think many fear that vastness of being alone, but, for you, Friko, it is a reality right now. I can only send you calming thoughts and that you keep up your strength. Do keep writing and reaching out.

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  20. I feel night time brings on the unaware thoughts. Its much harder when the lights go out, or are dimmed, or the sun going down. Darkness brings other thoughts to the surface, for it is much quieter and the feelings of being alone, empty, seem to make any bit of security less secure. I feel you will not be alone, there is help on the way - grasp it from the source that visit you tomorrow. The person that comes to make an assessment, may indeed be an angel and very understanding. Thinking about you and know you are not alone in these thoughts.

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  21. To have the person you love ripped away from you is, it seems to me, the ultimate in mental pain and I don't have solutions.

    I don't write a great deal about the detail of Leo's illnesses on my blog - it would give too much pleasure to the gloating family of his brother - but the times when he is only with me in body are very difficult to bear so I have some faint glimmer of how you are feeling.

    If it is an assessment of the way to equip the house to better care for your husband then I am sure that you will find the person concerned both professional and caring: penny pinching? I think these things are means tested to some extent...but I am not up to date.

    Any number of people care about you - both of you - but I know that that is not much comfort in the early hours of the morning.

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  22. Hoping that you were able to get some restful sleep, dear Friko, and that the professional folks who visit will be caring and helpful. xo

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  23. So sorry to read this. This long walk that we all must take at one time or another. Nothing can be said to make it easier. You are not alone, clearly from all the blog readers who care for you enough to send their love. You are brave to share this and it helps us all in some way.

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  24. I hope that daylight brings some solace and some help. I read all of the comments and I hope that they will make you feel a little better. Living all alone here in the US is my greatest fear.

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  25. Your visitor will have had a great amount of experience in the care of dementia sufferers and will know exactly what is available in the way of help locally .
    And don't be alarmed if a care home is suggested eventually . The final choice is yours and no one will want to rush any decision made .
    Having said all that , it still sucks . Good luck !

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  26. my heart goes out to you. frightening enough when it happens but how much more so when it comes out of nowhere and descends quickly.

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  27. So sorry, heart felt compassion, understand and realize more and more
    everything can change so quickly

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  28. You are constantly in my thoughts these days Friko, so when I read this post today written by Elizabeth Gilbert I felt compelled to share it with you too ...

    This is what the small, still voice told me in the middle of the night last night.
    WE HAVE AN ASSIGNMENT FOR YOU.
    IT'S CALLED COURAGE.
    This is what I believe you (what WE) have come here for: to learn how to be courageous.
    I don't think life asks anything more from us than this.
    Everything on earth, it seems, is set up to test our courage, and to give us chances to find our bravery.
    As a human being, you will need courage for EVERY important thing you do here on Earth — to love, to create, to share, to transform your life, to fight for goodness, to overcome heart-shattering losses, to tell the truth, to face criticism, to rise above your own inner darkness, to stand up for yourself, to defend those who are weaker than you, to face down those who are stronger than you, to find your own pathway to God, to ask for help, to offer help, to search for joy, to express pain, to celebrate, to grieve, to hold on tight at certain times, and — at other times — to just walk away.
    Courage is the hardest assignment in the world. But it's also the only assignment in the world. So in that regard, at least, it's pretty simple! (As the small voice said to me last night, "At least you know what your assignment is." To which I said, "Gee, thanks." But it's true: I do know what the assignment is.)
    All of which is to say: If you are stuck and lost right now, and you are wondering what you're supposed to do with your life next, I can tell you only this: You are supposed to find your courage.
    I wish I could tell you more than that. But that's the only thing the voice told me last night. And so that's what I will work with today.
    And tomorrow, too.

    .......

    So dear Friko, I wish you courage to face whatever the future holds.
    Thank you for sharing your journey.

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  29. It really is way tougher than you imagined when your best friend and life partner has taken such a turn and the wnhole thing sped up more quickly than hoped. Alone is a place that we never wish for. It is the hardest pain to have to face. Let us hope you will be assisted more after the assessment. All I can offer from afar is to reach out by listening. Please know that you are being sent good vibes. You need lots. And accept all the help from those close by for you need to keep well.

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  30. I am so so so sorry to hear all this Friko, really my heart goes out to you. I wish for you that your strength will not leave you as long as you need it so bitterly. I hope you still see the sun when it peeks through. I know life is cruel sometimes and hard to live. I also know that in the end we will always remember the good, you will too. Ich drueck' Dich mal ganz fest.

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  31. I agree with Andrew's comment. My mother was dead set against going into a "place," and I was equally opposed. Still, there came a time when there was nothing for it but to make the move. The (relatively) good news was that it came very near the end of her life. Your situation is quite different, but here is what I will add to Andrew's remarks. If you kill yourself with work and worry, it will be of no use to Beloved whatsoever. "Taking care of yourself" is more than a cup of hot chocolate or a glass of wine. You may be in it for the long term, so prepare accordingly.

    I, too, feel like my comment could come across as harsh, but I don't mean it that way at all. It's only that we're finite creatures, with finite amounts of energy available to us. Learning to use them wisely is critical.

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  32. With everyone else, I'm sending my love.

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  33. In the darkness, unquiet thoughts that are kept at bay by daylight creep in to haunt the mind. I send you my love, and pray for comfort in the midst of darkness, and for wisdom to know what to do.

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  34. Sending you every good wish that friends, neighbours, patients' and carers' groups, and above all the professionals, will rally round in a practical and sustaining way. I'm sure you can stand up to the penny-pinchers, but don't let them take you for granted so that you burn out.

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  35. Dear Friko - as with so many others, my thoughts are with you and your Beloved. Your posts have always warmed me with their sincerity honesty and wisdom. But above all I think you inspire so many with your words - and reading some of the responses to your post has itself been rewarding. As one person mentioned, the message of being alone is shared by all of us. (What a great quote from TSEliot) Yet here we are as a collective which is the other side of the coin. I hope this will help you find some solace and peace.

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  36. I read your blog always and have followed your journey with your Beloved. Just wanted to say that I too am thinking of you and hoping things work out for the best. And I hope your assessment the other day went well.

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  37. One thirty in the morning and alone, those words got my attention immediately. You have been on my mind and in my heart since your last post. I have no words of wisdom, but I do send you my sincerest hopes that the person coming to visit has brought you answers, support, and whatever else you need to carry this load. Being so unfamiliar with the system over there, it is hard to even know what kind of support you might be able to get. Here we have hospice, but honestly, that means that the caretakers are often still left to take care of the patient and all of the other needs themselves. I wish our blogging community could all fly over and spell you because I am quite sure there would be many, including myself, who would do that for you. I pray for you to find the support and care you need. Prayers are lifted for Beloved too.

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