And then there were none

Jeff86

There are six widely recognized activities of daily living—to wit, dressing, eating, toileting, bathing, ambulating, and transferring.   My DW, in late stage 6, has long been unable to independently perform the first five.   Now, transferring is also a challenge.

For the past few weeks, DW has difficulty going from sitting to standing, standing to sitting, and from sitting to lying down.  And getting her in or out of the car is easily a twenty minute affair.

Best I can tell, DW is afraid of falling, and so doesn’t want to stand, or sit, or lie down, as the case may be.  Needless to say, she is not amenable to any sort of reasoning.  Mostly, I wait her out, and eventually she’ll stand, or sit.   If I attempt to force the issue, she hollers bloody murder.  So….I don’t.

Every phase of this disease is so hard that, somehow, it takes me by surprise when it gets harder still.

Ed1937

Jeff, I'm sorry. It's unfortunate that getting harder is the only way it goes. I think you're right when you say you think she is afraid of falling. That makes a lot of sense. I  just wish it could be easier all around.

Faith,Hope,Love

Jeff, I agree with what you said that "Every phase of this disease is so hard that, somehow, it takes me by surprise when it gets harder still".  I hadn't thought of that until I read your post.  But that's exactly where I am.  It seems like DH gets a little worse and I try to readjust.  We stay at that level for a little bit and then he gets worse, and I try to readjust.  If things would just stay the same for a while it would be a lot easier to cope.

Beachfan

Jeff,

I am sorry for the heartache each step of progression brings you.  My DH, also late stage six, is very much like your DW.  The only difference being, DH is in the hands of others now; I am no longer struggling with the physical aspects of his decline.  It is easier for me, but it doesn’t lessen the pain I feel as I watch him fading away.  I admire your stamina, strength, and resolve in caring for your DH at home.  I thought I could do that; I did not.

M1

Dear Jeff, I also am amazed that you have carried on as long as you have.  Losing mobility--one more thing.  Do you need the assistance of someone else to move her?  That is going to take it to a different level...

Joydean

Jeff so sorry. You are so right . I just echo everything FHL said. Just when we get to where we can manage some new nightmare shows it’s ugly head. Wishing you strength to carry on.

Jo C.

So difficult, I am sorry.   I did discover after a bit that my LO was experiencing lightheadedness with movement; upon occcasion to the point of dizziness, so moving took longer than long sometimes to accommodate the scary feelings that generated fears of falling or disorientation to space.

J.

Jeff86

Thanks for the comments/empathy.  The kudos, however, I don’t deserve.   Others among us have been on this road longer, some much longer, than I have; my DW is far easier to care for than many; and I have a lot more help than many of you.  

M1, I don’t need help moving DW.   Her weight is now down to two digits; when the EMTs were here last week, they dismissed any issues getting her downstairs, saying, “She’s tiny.”
I continue to care for my DW at home because I can, so far, and I think it’s what she wants insofar as I can tell.  I have discovered that a recent increase in bowel incontinence is not proving to be a proverbial line in the sand.

What I can’t solve for is heartbreak.

toolbeltexpert

Jeff so sorry, your right about heartbreak, and I don't think the proverb that time heals all wounds applies to heartbreak. And you deserve all the Kudos. All the help you have," makes the work easier" it's  the heart that bears the brunt of this terrible,terrible disease, you said it well.

M1

No, no solving for the heartbreak, that's for sure.  I have no doubt,though, Jeff, that you will be able to look back, in the future, and honestly say you did everything you could.  Perhaps that ultimately solves it, Jeff.  I don't know.  Loss comes to all of us--grief is the price we pay for love, is it not?

Ed1937

Jeff, you're right. Heartbreak is the worst. But I can promise that it will get easier. I'm sorry you have to deal with this.

ImMaggieMae

Jeff, I’m so sorry your DW is having these new issues. You are right, there is heartache every step of the way. You kind of hope certain things will never happen and if and when they do, it’s crushing. But we find ways to deal with it. You absolutely deserve all the kudos for caring for your wife in her own home. Even with help, it isn’t easy.I have so much admiration for you.

Hoot619

Jeff, I'm so glad you can be there for your wife . I finally had to give up.  It is real lonely around here now. I wish I could have done more for her. Hoot