Friday, 27 January 2017

I Daren’t Crow Just Yet. . . .. . . .

. . . . .but Beloved has been accepted for nursing care at an EMI facility and Residential Home in Ludlow, a drive of no more than 40 minutes away. It costs an absolute arm and a leg but we have a magnificently generous member of the next generation in the family who is going to bear the brunt of the costs. I am still hoping that a small contribution will be made by social services and maybe the Musicians’ Benevolent Fund but member-of-next-generation assures me that I needn’t worry about funding.

When I got to the ward today I had a shock. Beloved was sitting slumped in his usual chair, ashen faced, chin on chest, oxygen mask attached. Deeply asleep. His pyjamas were stained with food spills, his hair stood off in all directions. Not a picture of health and happiness. In a flash I had a picture of the nurse/assessor walking in on him looking like an immediate candidate for the boneyard and making up her mind there and then to forget about him as a patient at their pristine home. Silly of me, because that’s what their homes are for, to give old people coming to the end of their lives a dignified exit, as pleasant as possible. What's a food stain or two on the front of the pyjamas matter compared to that?

I made a bit of a fuss, the harassed nurse in charge of the bay took off the mask and put in a nasal cannula instead, explaining that his blood oxygen levels had come up again to an acceptable level during the morning and that his extreme sleepiness was due to insufficient oxygen uptake. They couldn’t wash him and change his pyjamas because they simply hadn’t been able to wake him sufficiently and for long enough.

Nurse/assessor being a member of the profession understood perfectly. I combed his hair, tidied his dressing gown around him and sat him up a bit, with his help. Loads of questions, during which Beloved nodded off again, off and on. But when he woke he was quite lucid.

All in all it went ok; it was decided that he should go into their nursing facility to regain some of the strength he had lost in his two weeks in hospital and that he might recover enough to be moved to the residential unit later.

He was sweetness and light, smiled, agreed with everything nurse/assessor said, professed himself delighted at being ‘sprung’ to go to a ‘convalescent home’ (my idea to call it that), that Millie would be able to visit, that I could spend as much time with him as I wanted and that he’d finally have some privacy again. Even the chef-prepared food appeared to interest him. In other words, he was the perfect gentleman.

Then the nurse/assessor left to speak to the staff on the ward and to look at his notes. Immediately Beloved’s face went dark, a serious frown on his forehead. “Don’t believe a word she said,” he whispered, “I don’t trust her for a minute. Do not go in with her, do not invest in anything she suggests". I was taken aback. Dementia patients can become very suspicious of others. “Really,” I said, “you think so?” “Absolutely”, he said, no doubt in my mind at all,” “Very well,” I said, “I won’t then.” He was satisfied with that.

Nurse/assessor came back to discuss arrangements with me before she left. Once again Beloved was smiling and sunny. By now a friend of ours had appeared at the bedside and for a moment several of us talked at the same time, making a conversation he could not follow. Immediately he went on the offensive. “Tell me what’s going on”, he said, “I can’t understand what you’re all saying and I don’t like it. If you don’t stop it I won’t trust you anymore either.” looking daggers at me. Dementia patients have lost the ability to follow a more than two-way conversation and are quickly beset by fear and anxiety, making them aggressive. They take a lot of understanding, tact and intuition and losing patience or intimating that you think them stupid is the worst anyone can do. Always agree with them or distract them. They are easily distracted and even the offer of a cup of tea or pointing at a cloud will do to lead them into safer waters.

A nursing home for dementia patients should be just the perfect environment for Beloved. Make sure you keep your fingers crossed for a few days more, please.

When, like now, I am thinking of him and what he’s said or done today, I have the feeling that all I need to do is run down the stairs, find him sitting in his favourite arm chair, and tell him all about it. Alas, he will never come home. When transferring him to a nursing home means that we can have maybe a few more months of quality time rather than me wearing myself out attempting to look after him, then so be it.



39 comments:

  1. Hugs for you both, and I hope he is made comfortable and dignity is restored. I know this is hard and you are doing more than others I've seen faced with the same situation. I'm glad you are getting some help with the financial end of things.

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  2. Echoing e. And yes, quality time for you both. Fingers and toes crossed.

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  3. You are very wise and handle this better than I did in some situations. I think of you often.

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  4. It is so difficult to go through this - you have to cherish any tiny moments of joy. Use stories and music and pictures to distract. You are doing a great job of giving your love and support. Wishing you the best.

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  5. This is so hard. I am so glad you have found a good place for him.

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  6. I had to smile at your comment about "agree or distract." That's so, so true. And how clever of you to use the phrase "convalescent home." That has a rather sunny feel to it, and certainly beats other names that some (particularly in our health bureaucracy) use.

    You've clearly gained a good bit of understanding of dementia over the past weeks. The fact that you can describe what's required so clearly also hints at the tremendous effort it's taking to live through this. Our sunset tonight is glorious. I wish I could take you out to see it, just for a few minutes.

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  7. I'm glad it worked, and that someone is willing to pick up the tab. Being realistic, that must have helped the decision to take him.
    And he can have visits from Millie too...icing on the cake for both of them.

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  8. Our fingers are crossed, absolutely. May all go well.

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  9. I so hope the news stays good! You really seem to have learned a lot about coping with dementia. Having those mental tools to work with makes it easier for you both. I wonder if you, maybe, weren't as alone as you were feeling, since somebody who is able cares enough to pick up the tab. A huge bonus that is. Thanks for letting us know so quickly. Friday was to be the day, and you did not keep us waiting for the news. You deserve the best.

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  10. Such sad moments, but now you do have the acceptance to the EMI facility on the horizon. And yes, what a blessing to have such help from the family.

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  11. My fingers remain crossed. My best wishes go out to you and your husband. My admiration for you grows. xo

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  12. You are accepting the irrational and learning to deal with it. You understand what dementia patients are like. It helps you to see things in a realistic way.

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    1. You have explained this all very well. That is good news that his family will help in paying for his care. The money issue is real and, for many, a tremendous burden and worry.

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  13. I am sorry you and Beloved are going through this. You do have a good grasp of the situation, however and you have a lot of people wishing you the best in all things. You are a wonderful example of a human being.

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  14. This is so hard as I recall my experience with placing my mother in a facility -- the days before she left -- my knowing these would be her last moments at home -- fighting my own tears at times lest she see them -- the few days in the hospital and then that final move. Yet, I knew it was best -- the memories are all vivid with me still -- so many years later and she has long since passed on. I'll be thinking of you and hope all goes well as your husband settles into his new home -- as you adjust to your new situation at home. All will be well -- be patient with yourself.

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  15. I hope the move comes to pass! It sounds like such a good place for your Beloved. Fingers crossed!

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  16. Thinking of you as you handle this situation. Thankful some financial help
    and you are handling all wisely, rest when you can and take care of yourself.

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  17. -glad he will be looked after in a home. It's a wonderful thing to have a generous relative.

    All the best from CA.
    B

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  18. Answers to the question are not always easy when dealing with dementia. What is best for us all? Thoughts are with you as you face the next stage

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  19. What a potential relief, and to know that others in the family are stepping up as well. I hope you get some time to rest and gather your strength, and settle into a manageable routine.

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  20. Dear Friko - that sounds like good news for you both ... it will take the 'care' anxiety of looking after Beloved, while giving you both time together ... and you can recover each evening and have a reasonable time at night ... Millie will provide you both with some degree of normality. I do feel for you - and wish you all the best ... so pleased help is generally at hand for all things. So here's to wishing all things go well in the next few days and you can know that life will be easier and at least you can enjoy some time together without worrying too ... with thoughts and hugs - Hilary

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  21. Dear Friko ~ This is such good news, a caring facility/home, and someone's stepping up to take care of the majority of the finances. This has to be such a big relief for you.

    Love, hugs & prayers ~ FlowerLady

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  22. Still keeping everything crossed for you. Wonderful to have the cost met for you, what a blessing.

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  23. I'm glad to know he has good care. I wish we could get the same sort of care in the US, but it's prohibitively expensive. And you will be able to have him for some time ahead, I pray. :-)

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  24. You are very lucky to have a family member who can assist in the cost. I hope your Beloved settles and is comfortable in his new surroundings

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  25. Fingers are crossed and good thoughts and hopes coming your way and this good and encouraging news.

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  26. I am so happy to learn that you have been able to find such an acceptable solution to such a painful and difficult problem. The convalescent home sounds like a very good and positive place for your Beloved to be. Your reaction to the difficulties that present themselves with a dementia patient are so positive and I am sure are helpful not only for him, but for you and others as well.

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  27. I'm so relieved for you. How fortunate that the family member cares enough to cover the costs. we are all loathe to send our Beloveds out of the home and into a facility but sometimes that is the best option. as you say, quality or quantity. you will need the time away to recharge yourself and you can enjoy your last days together. if you were caring for him at home, there would be no enjoyment.

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  28. He is is very lucky to have you. And how fortunate someone has come forward to finance this next step on his journey.
    You're in my thoughts.
    XO
    WWW

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  29. Thanks for this update. Cold haard reality hits here. Why the pursuit of long life if it ends like this? Better to go out with a bang I think.

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  30. So very glad he was accepted! :)

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  31. My fingers are crossed. Glad you have all this help and blessings on the member of the next generation!

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  32. You did the right thing, friend Friko ... although I must warn you ... keep a close eye on him when visiting ... I worked on a dementia unit once but lasted only a year ... not because of the residents but the very "hardened" staff ... anyway, wishing you and your husband much peace in every way ... Love, cat.

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  33. Indeed, so be it.
    How wonderful that there is such a generous family member to bear the brunt of the enormous cost. I hope Beloved will feel better at the nursing home than in hospital. How horrible it must have been for you to find him the way you did, oxygen mask, stained pjs, and ashen-faced.

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  34. Yo are helping us all by sharing your life with us . Thank you. This posts shows strength and acceptance. Take good care of yourself .

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  35. That is indeed good news. I hope that he does well there and it brings you peace.

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  36. What good news for both of you! And blessings to that generous family member!

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  37. Dementia sucks especially for you. I am glad your beloved has good care and I was sorry to read about his kidney function...so sad that there is no cure for him and you. Stay strong and take one day at a time :(

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