Changes to sleeping works.

Yesterday Tuesday 6th November was our latest visit to see Dr.G whom the girls refer to as Dr.McSexy or variations on the theme. The appt was changed to a Tuesday and was later in the day than usual which had it’s good points and it’s bad. The good points- Ju was uncomfortable and in pain and was able to describe the feelings to him directly. The Bad Points- Ju was uncomfortable and in pain.

Attending yesterday were my daughter and her new husband who took us for lunch on the way after which we stopped and had coffee at garden centre where Yvonne and Julia were able to drool over the beautiful ( and very expensive ) Christmas decorations. When we arrived one of my nieces was waiting for us. I have to say that the whole family has been marvelous about Julia’s illness, either wanting to be kept informed or actually attending the appointments. My niece Karen rarely misses any though whether it’s for Ju or not or to ogle the oncologist remains to be seen. At least my daughter wasn’t going to be saying “Phwar” with her husband in such close proximity.

While we waited to be called in I found myself remembering last month’s argument because I wanted to get a more up to date picture. I can understand the point of view of those in opposition but as I spend all my time with Julia, knowing how things stand would give my brain facts to work on and I’d know how far to push and /or encourage Ju in various things. Eating, sleeping and going out. Anyway Ju’s name was called and I suddenly found myself not wanting to go in with them. Ju had promised me she’d be honest in telling him how she felt rather than the automatic “Fine Thanks” when asked how she is. Everyone went in while I the coward dashed to the loo to settle my now churning stomach.

I came out and decided a cigarette might be a good idea to calm me while they were all inside. I just finished it in time to see them all trooping out. Dr.G had asked Ju if the MacMillan nurse had been in touch to which we were able to answer no. We know he’d requested it a month ago. He left the room. Reports say that after a short absence Karen was heard to say, ” Boring without Dr McHottie isn’t it”. He’s also checked why the pain management clinic hadn’t yet responded with an appointment and chase it up. We are to give it to the end of this week before reporting back if there has been no action.

I sleep for roughly four hours a night. In recent months Ju has been going to bed for comfort at about 6pm then watching TV till about 1 am before sleeping. Then I have to rouse her at 8am to deal with the pets ( a playtime they all look forward to with her). On a Friday it’s usually 6 am for shopping. He asked about the pain and about her sleeping before prescribing a new medication which helps with sleep and pain. Last night I went in at 10.30 and she was spark out until I woke her at 8 am today. She was also much more comfortable and we were able to go out for coffee this morning. I think the medication also plays tricks on memory since when time to pay came she remembered she’s left her bag in the car. It’s funny, but this particular medication has been working for months before it was prescribed.

Her weight was the last subject for discussion. Ju is happy that she hasn’t lost any weight in the last month whereas I’m unhappy that she hasn’t gained any despite my hard work. She’s shrunk from a size 14 to a size 8 which is ridiculous. Anyway Dr McBrownEyes has doubled the dose of appetite increasers and suggested  ( with some force) that Ju tries grazing continuously throughout the day. This mornings expedition that led to coffee was to a supermarket to find lots of things which she likes the taste of so she’ll be encouraged to eat. The fridge is now full of yoghurts and rice puddings with a large packet of milk chocolate digestives- for the sake of balance I made sure we got a large packet of dark chocolate digestives too.

So now it’s back to the drawing board. No scan means we ( I ) don’t know how things stand but things are going to be great if the sleeping pills/pain relief continue to work and give her pain free nights. They will be great if we can have a lot of much more comfortable days too. Things will be magnificent if when we see Dr McDon’t it make your Brown EyesBlue, I can report that Ju’s memory has improved and she remembers her purse when it’s her turn to pay. I need her help to choose Christmas presents so she has to buck up. I’m almost done but my brother in law is proving difficult and Yvonne is giving me no idea this year apart from a coat for her birthday. I wanted her to take it now since she was shivering in our arctic blasts of yesterday , but no, she said blue suits her.

Thanks every one for letting me blow off steam like this and indulging me. I love my wife dearly ( and I mean expensively)and there are times I don’t know which way to turn. Am I doing the right thing?  Who do I talk to? What can I do next? Talking to you all helps me considerably and I do appreciate those who follow the blog and comment.

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33 Comments

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33 responses to “Changes to sleeping works.

  1. It sounds to me as if you’re doing exactly the right things, David. As you know, we went through this for years with my step-father, and allowing him to do what he wanted and trying to keep him comfortable seemed the best treatment. We continue to pray for you both!

  2. David, you sound like the husband many women dream of. To have a man stand by your side when you’re ill, is one of most heartfelt things a man can do for his wife, girlfriend, mom, etc. I was told by mine from the get-go, when he was alive, that I couldn’t depend on him if I got sick. At least he was honest, huh. At the point when he couldn’t eat, and everyone tried to convince him, force him, he said, “Imagine how you feel when you look at food and it makes you sick. How could you eat?” I had a better understanding, but I still didn’t stop trying to make him eat.

    Is there a caregiver support group you could join? There are some online. One is Well Spouse Association, but there are fees to join. Maybe your community has one.

    As always, my thoughts and prayers are with you and your family. Give Ju a big hug right now. 🙂

    • Ha, I think if you asked Ju she’d describe me as a nightmare rather than a dream Mary J. She also says she just can’t face food and yet I have to keep asking her to try. I’m disappointed you got a man who wouldn’t stand by you if you were sick, I wasn’t aware we could pick and choose circumstances whereby we’d stick to a marriage.
      The idea of group is out I’m afraid since I’d have a real problem with strangers, that being my own Achilles heel. Just talking to you, my friends, helps though.
      Hugs.

  3. I think once you get the Macmillan nurse that will prove to be a huge comfort for you, having an extra person to bounce ideas from and also someone who can help you reconcile your desire to have a timeframe of sorts opposed to the others not wanting to know, I am one of those who like to have all the facts to deal with and know how much I would struggle to cope in your place. You are keeping her spirits up and doing all you can don’t be hard on yourself for also being human

    • Many thanks Paula. I’m looking forward to seeing the MacMillan nurses who must have dealt with situations like this many times and may be able to satisfy some of my questions. Facts help a great deal when you’re a little lost but in this case at least someone will be able to advise Ju what to do on her worst days and counsel me as to whether I continue trying to get her to eat and increase her weight, or just leave her to it and hope she’ll eat when she wants to.
      You’re a great support and I thank you.
      Hugs

  4. Hey David – it’s such a “love hate” day to day journey. It’s always tough to know if “You’re doing the right thing” “Talking to the right people” and “What to do next.” It’s mind boggling, physically draining, and emotionally disrupting for all…how well we understand. I so enjoy reading your sense of humor laced throughout your words. You always have been, still are, and am sure will continue to be one of the best and sweetest people on the face of this planet. Ju is very lucky to have you, along with your entire family…true folks who earnestly care so much for her, and are with her every moment to help make her world a better place each and every day. As always…you remain in our hearts and prayers – we send our love along with some beautiful flowers, dark chocolate, and tons of hugs!!!! ~Janet, Don, and Wiseguy~

    • Ah, Dear Janet, I know you understand and that’s probably why I’m more able to open up because you all have experienced this or similar.I think you’ll find it’s me that’s lucky rather than Ju but I don’t mind who it is as long as it is. Thanks as always for the sweet words to me and for the gifts.
      I send a bunch of flowers of your own choice, a huge box of mixed chocs so I can’t get it wrong and Hugs by the bucketload.
      xxxxxxxxx

  5. Catherine Johnson

    Not only are you doing the right thing but you are still cracking jokes so your spirits are pretty high considering. Don’t worry about anything to do with Christmas that will sort itself 🙂 Take care!

  6. I don’t know what a MacMillan nurse is but I’ve got my fingers crossed that Lady J [and you] get one soon. And the grazing sounds like a good idea too. Huge hugs to you both.

    • The MacMillan’s are specialised nurses who deal with terminally ill patients in hospices and in their own homes. They’re a real comfort and very helpful at getting things that are needed, even big things like washing machines sometimes. They help the patient and the family with care and advice.Thanks for crossing your fingers as I reckon Lady J needs rescuing from me for a bit. I’d love to send her on a weeks riding break but I’m not sure how the horse would cope with four rats and three degus on it’s back too. Mmm, maybe I should leave her here and go myself.
      Sending Huge Hugs.

  7. I think you’re a hero, myself. I suspect your family thinks the same! All the best. Glad she’s sleeping. Everything improves with good sleep.

    • Thanks so much Shawn. I’m definitely no hero, I’m just a husband and I’m sure most would do as I do in this position. I’m glad she’s sleeping too, but I think she’ll have to take the tablet earlier as she took it t 9pm yesterday and it was almost midnight before it had her snoring. As for your last statement, that’s blatantly untrue since I sleep every day and my looks don’t improve a jot. …
      Huge Hugs. x

  8. I wish I could offer more to you and your family, David, but my ears and prayers are all yours. I’m really glad Julia’s sleeping better and more comfortable, despite the side effects…

    As others have said, sounds to me you’re doing everything right in a very difficult time. Just keep being who you are, I think that’s all your family, and especially your lovely (and loved) wife need.

  9. Renata you’re a star. Thanks so much for the comments and the kinds ones at that. All my friends offer plenty by allowing me to vent sometimes and still offering me support despite my whingeing. I’m so very grateful to know people like you who have such kindness.

  10. That standard reply “Fine, thanks” doesn’t do anybody any good but we just can’t help ourselves, can we!

    My Nan was a terror for it, my mum would come out of the doctor with her completely gobsmacked. The reason they were there was for the pain in her legs that made life impossible and when the doc asked how she was, “Fine, thanks”, it is just a reflex!

    My Dad is very funny and goes the opposite way. An enquiry after his health will result in a dramatic sigh and a “Well, how long have you got?” then a recount of the nail in his toe and the bone in his foot with a final “Just cut my head off and sew a button on.” 🙂

    So glad to hear that Lady J’s sleeping has improved. A good nights sleep would have to contribute to better days, I’m sure. It is a pity about her not eating more, but that doesn’t give you an excuse to eat her share of cake too, ok!!

    Hopefully the MacMillan nurse will be able to help both of you with making life a bit easier. Fingers crossed for you all 🙂

    • Hi Metan. Well Ju didn’t go to sleep last night till almost midnight.This morning I had to wake her at 6.45 to be out of the house by 7.30am. I had to use a crowbar on the eyelids and roll her off the mattress to the floor. I think she drove with her eyes half closed anyway so how she didn’t fulfil the threat to kill me I don’t know.
      Your Nan sounds typical of her generation, going to the doctor with her leg hanging off and asking to borrow needle and thread.
      I’m still determine on the food front and made sure there were plenty of tempting things in today’s shopping. She can graze to her heart’s content now and I’ll suggest things she likes or one main meal if possible.
      Getting hold of a MacMillan nurse will be a start, it’s like trying to knit fog finding one.
      Sending you big hugs.x

  11. Dear GL,

    You know darn well that you don’t need any of us to tell you what to do for Ju. You feel lost and helpless because that’s the big C making you feel that way, but you will always do right by Ju. I know that in my heart as well as you do. You are the perfect one for her. Now keep being great big huggable you! MUAH! xxoo

    Hugs,
    Patti (Spidey to you)

  12. Thank you for allowing me to live in your world a tiny bit and hear you and your friends talk about life with your Ju. Be careful driving,
    Maria

  13. David,

    You are doing everything perfectly correctly. In my humble opinion, you shouldn’t question how you are feeling, reacting or simply being human. You just want the best for Ju, yourself and everyone. Your posts show me and the world how much you truly care. You are doing great my friend.

    Aaron

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