Sunday, May 31, 2009

Every little thing is an effort

It's getting harder and harder for me to do even the simplest things. A "trip" to the bathroom leaves me exhausted and gasping for breath. I just want to stay in bed, but at the same time I feel so frustrated at not being able to do anything. When I'm lying here I think about how easy it would be to do some simple thing, and then I try and find that I can't do it, which leaves me feeling even more frustrated. I don't know how long I will continue to get weaker and weaker; I'm already almost totally bedridden. I guess I should start doing some things, like brushing my teeth, in bed, as it is so tiring just to stand at the bathroom sink.

At least I've stopped wetting the bed. That left me feeling so humiliated--it's such a basic loss of control. Marty had to change the sheets yesterday, which is hard for him. When Laurel is here tomorrow I'll have her wash all the stuff that got wet. I also think I should start having some adult diapers in the house--that's humiliating, too, but not as bad as a wet bed.

We were up very late last night, till about two; it was one of those times when I was too upset to want to go to sleep. So we slept late this morning, till about nine. I'm feeling tired now--I've been coughing all day, unlike most days when I usually stop coughing after a couple of hours. I've got sore muscles in my chest from all this coughing. I spoke to one of the hospice nurses a little while ago, who suggested that I increase my morphine and take a nebulizer treatment, which has helped a little bit.

We had a good time with the Times crossword puzzle, which was very clever, although we figured out the trick pretty quickly. It's good that we can still share this pleasure together--there's so little else that we do for fun these days. Marty is under so much pressure and I hate to add to it, but at the same time I need his help for more and more things. I'm so lucky that he has the patience to put up with me when I'm so needy.


  1. I do my daily crossword in ink, but I can't do the NYT puzzle for the life of me! Congrats in that!

    Re: the wet bed. The problem with Depends is you have to be wearing them before you think you're going to need them. For bedtime occasional issues, try sleeping on a crib liner. It's wet proof and chances are will save you from having to change the sheets. Give it a try!

    P.S. I love reading your blog, and thanks for writing about your experience. It's painful to watch from the outside where there's nothing I can possibly do to make it better for you. Be as well as possible.

  2. I've been using liners--the problem is they bunch up and never seem to be in the right place when needed. I think I need an attitude adjustment as much as anything else. I remember that when my Dad was caring for my critically ill Mom at home and she pooped in the bed, he cleaned it up with a shrug, remarking, "It's only shit." So, it's only pee, there's plenty of clean sheets, and Laurel will do some laundry next time she's here. If I can keep the emotional side matter of fact, it should help.

  3. Hi Judi,

    It is very hard being dependant it really is not good for self image but as your dad said it is just shit and does not detract from the fine woman you are.

    Take it very easy.
    Sending you lots o0f love from Amsterdam.


  4. You can also use other products like a large pad for incontinence. They exist also.

  5. Hi Judi, I have been reading your blog for a little while now and truly admire your courage and appreciate you taking the time to share this with us. Most of the things you are going through I have not experienced, but incontinence is one thing that I have lots of experience with. I have been incontinent for about the last ten years. One valuable lesson I have learned is that there really isnt a need to be embarassed or ashamed about accidents. People dont really care about the accidents, if they do show concern, it is for your well being and comfort. There are many products that I use to manage my incontinence. The best thing I ever bought is a full legnth bed pad, they make them in all sizes. That way there is no bunching up or moving around. If you have your own washer at home, I also recommend the use of re-usable adult diapers. Not only are they more comfortable than the disposable variety but you dont have to worry about going out to get more. Both of these items I get online on eBay. I would be happy to share the names of the places I get them from if you like.

    Keep up the courage and remember to enjoy the little pleasures in life :)


  6. Thank you for your incredibly forthright and meticulous journal. The more we talk about these experiences, the less isolating they become.