Friday, 10 February 2017

Good Days Bad Days . . . . .

and so it goes, there is no help, there is no hope.

When I visited the care home today Beloved was sitting in an armchair in the TV lounge, fast asleep. It was about three fifteen pm, long enough after lunch for him to have woken again from his regular nap. Or so I thought. He barely managed to open his eyes, and even Millie raised only a very feeble smile. He still knows me, still knows who it is who strokes his hair, holds his hand and speaks close to his ear.

The nurses say he is bright and alert in the morning, eats a hearty breakfast, potters about in his room,  with the aid of a Zimmer frame, and listens to the radio until lunch time. I can hardly believe it although they have no reason to fabricate stories. Perhaps I should visit in the mornings rather than late afternoon.

Today it looked as if he’s given up, or perhaps the dementia has fully enveloped him. In the very short space of two months he has changed beyond all recognition. He’s always been rather handsome, in a gentle way, now his face is deeply lined and pale. His eyes are rarely other than vacant, except when somebody other than me visits him; there is still that ingrained politeness, the good manners, the obliging personality. The carers and nurses have already grown fond of him. “He’s lovely, no trouble, the perfect gentleman.” The lady in charge calls him “a charming man”.

I am getting used to being home alone, with only Millie for company. Tears for what was, and is no longer, still come but not as frequently and overwhelmingly as a few days ago. I come in, take off my coat and pour myself a glass of wine. I have started to cook again, meals with a few vegetables and small quantities of fish or meat or an omelet. Nothing very elaborate, just more than the chocolate and tranquillisers I ate when the whole misery kicked off. I still make for the cupboard that hides the chocolate but my consumption of it is less compulsive.

On two days I didn’t visit the care home, once to buy a fridge/freezer - wouldn’t you know it, several household appliances have packed in - and once because I was inundated with jobs left undone. Of course, I felt guilty for not going, but I must admit that those two days were also a much needed break.

I am not going to visit Beloved tomorrow either, tomorrow is a grown-up day: friends are taking me to see 'The Rover', a play by the seventeenth century poet, novelist, translator and playwright Aphra Behn. She was one of the first English women to earn her living by her writing, I’ve never seen the play and I'm looking forward to experiencing an early feminist writer’s take on love, infatuation, confusion, anger and revenge at the Royal Shakespeare Company. I believe it all ends well which will help cheer me up.

Monday morning a violin dealer is coming to the house to take a look at Beloved’s remaining instruments, a bow and other musician’s paraphernalia. I hope he will relieve me of much of it. No one in the family plays the viola or the violin, they’ve all taken to other instruments, so there cannot be any bad feeling about getting rid of them.

Last Wednesday afternoon I came home, plagued by the usual guilt feelings at my ‘cold-hearted disloyalty’ to the one man in my life who has meant more to me than any other. We really were two sides of the same coin, indissoluble, I thought. Friends for life, lovers for ever. I sat over my glass of wine, shocked and in disbelief at the enormity of what I was doing. I thought back over the days since he left hospital and entered the care home, and pictured everything that has happened since: everything he said and did, everything he needed to have done for him, everything doctors and nurses, carers and the memory specialist said. I pictured him being helped in and out of his chair, into the bathroom, into the shower, being dressed and undressed, put to bed. His alarm button and the mat in front of his bed which is sensitive to the pressure of feet - setting off the alarm in the nurses station telling them that he is on the move in the middle of the night - , his long sleeps and confusion on waking, his growing impatience with me for being unable to help him make sense of life generally, his incoherent rambles about a time I know nothing about.

Setting it all out before me, in my mind, I suddenly knew, without a shadow of doubt, that I could not look after him at home; I knew that what I had done was the only thing to do, the kind thing, the decent thing, the safe thing. People have been telling me so for three weeks, I suppose I had to realise it for myself. When I saw him today, frail and absent with just the tiniest smile playing round his lips when I called him ‘my darling’ my eyes filled again, but this time there was no guilt, bitter regret, but no guilt.




34 comments:

  1. There is nothing to say in response to this post, except that my heart goes out to you, and Beloved. Life as we age is no picnic, but demential is especially horrible. :-(

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  2. Bitter regret ~ no guilt! Oh yes, I understand completely.

    Love, hugs & prayers for you and your Beloved dear Friko ~ FlowerLady

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  3. Oh, dear Friko. You are a brave and wise woman. Regret without guilt - yes. Love and prayers.

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  4. This is deeply important writing. Incredible important to aging me with an aging mate and age-related worries. It strikes me that MANY MANY others would find much value in it too.
    Thank you for posting. Warmly,

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  5. oh Friko. this whole thing is so fucking sad. I'm glad you have accepted that you have done the right thing, the only thing you could do really. For as strong as our bodies seem, we are all on the edge of frailty. dementia though is a cruel joke.

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  6. That realisation, when it comes, is blessed.
    Your Beloved seems to be a stage similar to my mother's. I visit most days, but she is now in a place in which I have confidence. I know own that she is well cared for when I am not there. Don't discount the length of time it will take your Beloved to settle completely. The sleepiness is something with which I am familiar. Mum sleeps a lot and will tell me that she is tired and wants to close her eyes for a bit.
    I am so sorry to read your posts, Friko. This is where life seems so unfair. I wish I could come by to go for a walk with you or to talk about what we are reading or just to sit quietly. You are every bit as strong as I told you I thought you'd be. You need that strength.

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  7. Stages! You have to go through stages of grief. However, it's sad to see someone lose so much of themselves.

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  8. I'm so sorry that dementia has taken him from you...it's a cruel fate for you both.

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  9. Your writing is full of love for him...

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  10. At times like these we want to reach out with words of comfort but only come up with lame and useless ones. I am glad to see you surrounded by love here.

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  11. I wish I could offer something beyond kind words. Your strength and resolve in the face of this have been amazing. I am glad you have support and time with friends.

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  12. I hope you have a delightful time at the theatre with your friends. A few hours of diversion may lift your spirits a little. These past few weeks have been really tough ones. Your strength, your intelligence, is helping give you some equilibrium during these stormy times. You are an inspiration for the rest of us. Yes, you ARE surrounded by love here. Take care of you.

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  13. Sounds like you've worked through some of the necessary adjustments, at least if you've been able to let go of any guilt feeling, as you should. My husband had sold his upright bass years earlier so I didn't have that to address. Glad you could get out to the theatre.



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  14. You are right, no matter what in life it is about, we need to come to realise its truth in our own minds, regardless of how many times and how many people have told us before.
    I am glad Beloved still recognises you and Millie, and that the gentleman part of him remains part of his personality.
    How is his grasp of time? Does he know when you have not been to see him for a day or two, or is one day quietly slipping into the next for him, with not much difference between them?

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  15. Dear Friko - oh how this resonates back for me ... yes it was my mother but similar feelings and ultimately understanding - that glass of wine ... I feel for you. I do hope the play takes you away to other realms ... and that happy ending will be so helpful - enjoy. I'm pleased you will be letting another aspiring musician have the opportunity to play Beloved's instruments - letting that link pass to another who loves fine instruments.

    I'm sure you'll visit as often as possible ... when I couldn't go I found someone who would go in for me ... someone my mother didn't know - but who was ideal for her ... it ended being one of the best decisions I made. Perhaps the Home might know of someone who could fulfil that role for a couple of times a week ... spending that hour with Beloved ... just being with him.

    With many thoughts - Hilary

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  16. Your decision to have him cared for by professionals was the right one, for you and for him. 'Don't ever put me in one of those places', is a request that simply cannot be respected in some situations. You are fortunate that you have the resources from whomever to provide the best care for him. Mind, I do know of aged pensioners in your country who have received excellent through the local council system. Maybe not so much now as council funding has been much reduced by the national government.

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  17. continual thoughts of you
    and your beloved
    go through my mind.
    take care of you...

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  18. This is so sad, but you definitely are doing what's best for you both. I fear dementia and a major stroke more than anything because I'm alone already...husband has passed and no children, but a few good friends. It seems you have many friends and good family. You will be ok.

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  19. This post both breaks my heart -- for your loss of the life and love you knew and cared for with all your heart -- and for the hope that in doing this very hard thing, the knowledge that it was the right thing will move you forward. Knowing you are without guilt will help as you heal -- and there is the healing we do as we move forward now and the healing in the future. Your friends are taking care of you and I'm glad you have a night out at the theatre, something you love. Sending you that squeeze of the hand as you walk forward.

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  20. When we had to find a safe place for my dad when his dementia became dangerous to himself and others, we felt guilty. We visited every day, taking turns so that we each had two days off. We needed to do this for ourselves so that we could cope. When we would visit, we walked in with hope that it would be a good day for him and us, but often left sad and with relief that someone was there to help him and we could go home. When we lost him after seven months, we knew we had done our best for him and now he was at peace. We had no guilt, only the memories of a very good man and the happier times we shared

    Take care of yourself, dear Friko, and be comforted knowing that the staff at the home likes and cares for your Beloved.

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  21. I hope that by the time you read this, The Rover will have entertained and enlightened you beyond your expectations. It sounds like a perfect, if brief, escape from all that surrounds you these days. These are the ways we manage to take care of ourselves.

    You have done the right thing for both of you, Friko, I hope that your writing helps you through this, and hope you know that there are many who read your words will find strength now and in the future.

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  22. Take care of yourself Ursula. This is difficult I know. Sharing helps others (me) who are only at the beginning of the process.

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  23. I appreciate your openness and sharing your feelings on this blog. My heart goes out to you, don't feel guilty when you take care of yourself.

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  24. I am relieved for you that rational objectivity has taken the place of guilt. It would have been an impossible situation, ending, quite possibly, with your own breakdown. Dear U, consider yourself hugged—gently. Much love.

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  25. The development of your and Beloved's journey has been heartbreaking to read about and yet so many of us have to travel this road. There are some lovely comments here which I echo wholeheartedly. I'm so pleased the guilt has abated since there was no cause: and that the sharpness and overwhelming grief subsides from time to time. Life seems so short and the end so cruel: thank goodness for good friends and family. Thinking of you very much.

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  26. Not one of your decisions on this journey is going to be wrong. You must accept that. They are just what works for you in that point in time. This was very painful to read. Losing someone so slowly with a teasing hope that you will find some part of him when you visit is cruel. I am so sorry and glad that you are adjusting.

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  27. Blessed be, friend Friko ... for you are writing not only for yourself but countless others ... Love, cat.

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  28. So very grateful you share so openly and honestly. You are helping so many throw open their own doors. Blessed be, my friend. Blessed be
    XO
    WWW

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  29. I've been reading everyone of your posts - haven't commented much but they have made an impact. Your sharing this time in your life has gifted us all. As usual, your honesty, sadness, and yes, bravery I admire very much.

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  30. Thank you once again, dear Friko, for allowing us these views of what you are experiencing. Every post gives me so much to think about, while also causing me to wish I were able to be helping you. xo

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  31. That's so hard, but I'm glad you are coming to some peace about it.

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  32. I always save your posts for a time when I have a little extra time: not just to read, but to grieve for you, to let my own pain at your pain subside, to ponder. I'm relieved beyond words to hear you say that the guilt is ebbing, if not wholly gone. You could not have kept on caring for your Beloved at home - not because you are weak, but because his needs now are beyond any one person's ability to provide.

    I hope you had a wonderful time at the theatre. And I have to say, I was surprised by your mention of the pressure-sensitive mat by his bed. I didn't realize such things were available. Perhaps, when my mother was in hospital, they weren't. Believe me, such a gizmo would have been welcomed, since she was a bit of an escape artist herself.

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  33. Ah, Friko. I've been reading your accounts of yours and your Beloved's foray into foreign territory. You are the consummate artist, painting word pictures that let us accompany you into both the reality and imagination of your days. These stories help those of us who have not experienced this yet know it might be coming. Thank you for your honesty and your compassion and for sharing such a difficult time in your life. Your kindness is healing.

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  34. You are such a decent, forthright, and honest person. I respect so much your ability to move through this with such clear-eyed understanding. Our thoughts are with you daily, as always.

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