Monday 9 January 2017

Living with Dementia / 2

I sincerely hope that I will have other subjects to write about again but since that dreadful day in the middle of December I have barely had time to think, much less do, other than slog away. He’s got worse at a tremendous rate since then and hates to lose sight of me. Which means that I have to sit and watch idiot TV programmes with him. I have noticed though that TV has little interest for him now, he often falls asleep in the middle of his previously favourite shows, like Endeavour and Sherlock. Documentaries which fascinated him before are a waste of time now. There is a hole where his interests were.

The paramedics recommended that I arrange for a bed downstairs for him, so now he sleeps in the dining room, with the dining room table and chairs piled up in the conservatory. It’s winter and we don’t use the conservatory much anyway. We are lucky that the dining room connects to a downstairs bathroom which means no stair climbing any more. Scratching my head how to get a spare single bed from upstairs down the stairs and put into the dining room which is right at the end of the house, leading from the hall through the sitting room, I came up with an ingenious answer: call the fire brigade in the shape of the husband of one of my carers and a mate of his, who happens to live right opposite our drive. What else was I supposed to do? It was two days before Christmas and everybody was busy. So, one major problem solved. I have seen a lot of kindness in the past three weeks, kindness I never expected.

At least he’d be safe downstairs, I thought. He was very unsteady on his pins and needed my arm as well as his stick to move at all. Even with assistance he tottered and stumbled and more than once I grabbed him just in time before falling. Still, twice more he fell. Once he slipped on a rug (which has since been removed) slid down the wall behind his chair and grazed his arm, his back and bottom severely. On that occasion I called my good friends and neighbours, Sue and Ralph, for help. Luckily, their son in law Owen had arrived for the holiday and Owen and Ralph got Beloved back up and into his seat. Shaken and less mobile than ever. Those of you who know these things realise that the patient has to be accompanied and assisted at all times, in the bath, loo, at table, - oh my God, table manners are a thing of the past! - into and out of chairs, etc. Whatever you can think of, the dementia patient needs help with it.

So there we were, having overcome the first hurdles. We were also waiting for the doctor to visit with test results. Beloved was a little calmer, not wanting to get up every three quarter hour to visit the loo. I had started a groceries order which needed completing in time for a delivery the next day; he was asleep in his chair and I grabbed the chance to rush upstairs and add the last few items. Ten minutes later I heard the loo flush. Oh bother, I thought, he’s gone by himself. Well, if he’s dribbled into his pants, he’s dribbled and it’s too late anyway; I must get this order finalised. One learns to put up with a whole lot of things which one would never have countenanced before.

When I got down about fifteen minutes later he was nowhere to be found. Hello? HELLO? No Millie either. I went to the front door, he might have gone down the drive, although that seemed most unlikely, seeing that he could barely walk unaided. I saw a little red car had drawn up, doors open, motor running. Sometimes tourists mistakenly use our drive as an entrance to the castle and I was going out to tell them to drive out again and use the next track instead. No tourists stood there but Karen, one of Beloved’s carers got out, closely followed by Beloved and Millie. She had driven over the bridge and found the pair of them struggling up the other side, just starting on the steep hill to the top.

"I found them the other side of the bridge", Karen said. She’d recognised Millie and took a closer look at the man she was following, without a lead, walking freely along a busyish road. It was one of those icy days we had recently, bitterly cold. Beloved was dressed in sandals and a cardigan over a shirt, another ten minutes’ uphill struggle might have ended his adventure there and then.

He thawed out in our warm kitchen, Millie faithfully lying at his feet. “They’ve made a lot of changes over there,” Beloved said, “a lot of new buildings have gone up. I hardly recognised the town.”

No buildings have gone up in that part of Valley’s End recently, it’s been as it is for four hundred years, bridge and all, barring a few minor alterations. He’s lost the geography of his home village as well as that of his house.

When I berated him for endangering Millie, taking her out into the village without a lead, he said “She’s so good, I just told her to stay with me. And she did. She knew where she was, as well.” Meaning that he didn’t quite.

The amazing thing is how he got out and up there so quickly. For a man who can barely move he made extremely good time. It’s not an easy walk either. If he left by the back door there is a slope to negotiate and a very narrow, muddy track which I tend to avoid in icy or wet conditions because it can be quite treacherous. I asked how he’d got to the lane and he said he held on to the hedge and then the ivy growing at the entrance to it. When I told the District Nurse who had come to patch up his bruises and grazes she said “well, we all know how quickly toddlers can be.”

That’s what he is now, a toddler.






34 comments:

  1. Friko, I don't have anything helpful I can say, just that I want the sun to shine on you tomorrow and everything to be well.

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  2. What a beautiful post about very hard situations. This is hard for you to get through and I send you a hug. My dear husband died suddenly in November and I know how precious our loved ones are.

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  3. Thinking of you, Friko, in your world.

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  4. The wondering is one of the more stressful aspects. My friend just went behind bars! He's in a locked ward.

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  5. Music helps. But dear goddess I'm so sad for you. Music helped the husband of a close friend. I would sing to him to calm him down. She would dance (awkwardly) with him and his face would light up.
    XO
    WWW

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  6. I can only imagine how frightened you must have been when you found him gone! And how frightening your life is at the thought that you have to be constantly vigilant. I just hope that there are times when someone else relieves you of the responsibility, even if only for a short while. Do the carers assume the load, or are you always there when they are there?
    Thank you for taking the time to inform us about what is going on. My admiration-----respect!---- for you continues to grow, Wishing you warm days and helping hands to aid you in this journey.

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  7. My heart aches for you. I hope the help increases and continues. Most people are so kind.

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  8. Heartfelt hugs and oceans of caring.

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  9. Oh my! It must have been very frightening, you coming down and Beloved not being there. How fast he made it to the road when actually he is barely mobile really is amazing. I guess it goes to show what is possible when one is truly determined to do something.

    I like the music suggestion Wisewebwoman made in her comment.

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  10. Dear Friko - it is extraordinary how quickly people can up and go ... following what they think is their own routine at that time - Millie thank goodness seems to be aware of the situation. Oh ... such a difficult time - my thoughts as you go through the process and life as it is. You are showing us your strength and determination ... Beloved made an excellent decision all those years ago - my thoughts Friko - with hugs .. cheers Hilary

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  11. Until it happens , living with a dementia patient is impossible to imagine . You've caught it perfectly .
    Take care of yourself .

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  12. You'll need all the support you can get; don't be reluctant to ask for it, please. People like to be useful, and there's a lot of goodwill out there. A gentler hug to you this time. Much love, D.

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  13. It is wonderful, how much kindness is there when we really need it, and I do hope you continue to get all the help and support you need now. My mother was affected by dementia and it really is 24/7. Tough time.

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  14. Dear, dear Friko ~ My heart aches for you. What a scare you had, but what loving kindness is being shown to you by others. It is so unbearably hard watching our loved ones fade away.

    Love, hugs & prayers ~ FlowerLady

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  15. My cousin's husband is suffering from dementia, and she had a similar experience: waking in the middle of the night to find him gone. She searched their apartment, and then walked the building's hallways. As luck would have it, a friendly insomniac also was walking the hallways. She said, "I just saw a fellow in the front lobby -- perhaps it was your husband." Eventually, she got in the car and went searching, and found him six blocks from home. She echoed your comment: "It was amazing how fast he moved, when he hardly can walk to the dinner table."

    As she puts it, it's like suddenly finding herself on an alien planet. Nothing is as it was, and everyone is affected. In some ways, you will be more affected than your beloved, because you know what's happening, and feel the anxiety and worry more sharply. My cousin asked a dementia specialist what she should do to keep herself functioning. The answer? "Good food and sleep." Of course, that can be difficult, at best. Still, the answer's a good one, especially if you combine it with some sort of lock on the doors.

    My goodness. I wish I could pop over and give you the day off. All I can do is worry for you, at a distance, and send much love.

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  16. Friko thinking of you as your world changes and on kindness when we need help
    I am experiencing. It seems angels appear out of no where when we need them.
    Take care of yourself and receive all the help you can..

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  17. Thanks for sharing Friko. The world of dementia can be very lonely for the spouse. Just like they say on airplanes (put on your own oxygen before you try to help someone else), you need to take good care of yourself so that you can be there for your beloved. Easier said than done, I know.

    There is a great website www.welcometodementialand.wordpress.com Elaine Eshbaugh is a professor of gerontology. She writes about dementia with compassion and caring. Her focus is on supporting and educating the caregiver. I have learned a lot from her, and look forward to her posts.

    Take good care of yourself; sending peaceful thoughts your way.

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  18. He has come full circle, from toddler to toddler. I also feel for you, Friko, but I am glad you are taking the time to write about your experience, as you are not alone in trying to find a way to cope with a terrible situation. Sending you my sincere wishes that you will find the help you need for yourself.

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  19. There is not much more I can say that hasn't already been said, Friko, so I will wish you as peaceful a day as possible and I will thank you for continuing to share this rocky journey you are on.

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  20. My heart goes out to you. Nothing can prepare one for this sort of situation, and nothing I can say will really help. Just know that my thoughts are with you and you take care. Diane

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  21. Dear Friko, your husband's ability to fly the coop with such speed is very frightening. I am wondering if any of the doctors or carers are able to advise you on how to protect your Beloved from himself.

    Some of my dearest friends are facing a very serious medical situation in which one partner has become a round the clock carer. It is heartbreaking to see how both of their lives have been and will continue to be altered. I thought of their relationship as I read your post.

    It is heartening to read of assistance you've been receiving from folks who care for you. From this side of the ocean, i send my love. xo

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  22. Is it OK to admit that I feel so deeply for what you are enduring instead of finding something upbeat to say?

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  23. please do continue to write. it will be a good outlet for you and I'm sure your readers will not abandon you. many of us probably have the same future waiting for us before too awfully long. please try and take some time for yourself. one of the vendor's (at the antique store) husband has Alzheimers and he managed to get out of the house and drive off before his wife noticed and he was found about 4 hours away on a lonely road at night where he had run out of gas. fortunately a good samaritan stopped when he saw the car with a man sitting inside. the man found Sam's phone which he had turned off and the minute he turned it back on it rang with his son calling and so they got him back safe.

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  24. Love and hugs! I guess all you can do is be glad you are the one looking and not the one who is lost. You have a rough road ahead. We're here for you, even if it doesn't help as much as people who can move beds and locate lost husbands. We're here for you. We can heart-listen.

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  25. You need eyes in the back of your head and locks on the doors: but most of all you need to ensure that you have proper rest to enable you to cope.
    People will be all too willing to help, but don't always know what is needed...so don't be too independent to ask or to admit that it is a frightening situation.

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  26. You are living the experience of my friend Cheri. Hands on, day and night, and be careful they don't escape. You will need new locks or better ones, And especially the kindness of friends. It sounds like they are there for you and if there is any comfort, I think everyone is willing to help as they can for they, too, are in the path of this disease as are those they love.

    One thing -- be very careful when you are walking with Beloved that he doesn't bring you down if he slips and falls. It's weight that isn't balanced and you need to be aware. The last thing you need is two of you on the floor and you possibly hurt. It would be better to call the neighbor for help righting him, I think.

    Dear Millie. And oh, that sentence about how she knew where she was sent a lump to my throat.

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  27. Oh dear, dear Friko. My heart just broke for you all. I see that Jeanie has advised caution when it comes to supporting Beloved when he might fall. I had just thought the same thing. Being a caretaker means that you too could so easily be hurt trying to keep him from being hurt in a fall.

    Dear Millie. She stayed by his side and led to him being recognized.

    All of this is so upsetting. Beloved is loved by us all because he is loved by you. I am just so very sad to read of his decline. What a terrible disease this is that robs so many brilliant and gifted people of so much as they come to end of their days. Blessings, dear one.

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  28. when we stop trying, we start dying.

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  29. A little beside the point, but I'm gonna say it anyway, friend Friko ... Dogs know more than we think they do ... Millie is much like my Piwo was with me ... Piwo knew a day ahead when I would have a migraine ... he would not leave me out of his sight ... in fact he would stay physically so close to me, that I would almost stumble over him at times ... and sure enough ... next day I would have that dreaded headache ... I learned a lot from him ... I wish you strength and patience with your Beloved, friend Friko ... Love, cat.

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  30. You are doing such a great job caring for him.

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  31. Your dog did a wonderful thing in following...I wish you strength and I'm glad others have been helpful.

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  32. This is so sad. I feel for you.

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  33. I am aware that there are moments when the person gets strong willed and even gets a surge of enormous physical strength that are most unpredictable. Can Millie be trained to bark if he tries to leave the house?
    You are really on a new path of care giving.
    My hubby keeps insisting we have to watch Downton Abbey each night since September. We have gone through 4 repetitions of all the series and he still needs to see it again. He has lost the ability to follow a show. He finds it to be new each time. You are being very strong and brave. I am aware of how draining it must be.

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  34. And again, I'm sorry. Holding you in my heart.

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