• May 9, 2009 at 5:50 am

    I think it was one of our newer members of the community here that asked me in chat last week, “What do you feel is (or was) the hardest part of caregiving?” Off the top of my head I jumped to the area of “toileting.” I later wrote about that in my blog at “blogspot.” I qualified my answer with the fact that I considered that part one of the most unpleasant if not the hardest parts.

    There are a lot of other possible “hardest parts” too; bathing, feeding, lack of any help from family, lack of intellectual stimulation, the fact that you have to do everything now where mundane household chores may have been shared before.

    But I’ve had a chance to really think it over now and I know now what was for me the absolute hardest part of all. “Toileting” is not even close. I’m going to reserve my answer for a little while and ask you other caregivers out there, “What do you feel is the hardest part of caregiving?”

    Please post on this thread and I will check back in a while and see if any of you agree with what I think and if so or if not, I will eventually post my thoughts.

    Thank you –

    ( my blog – http://analzheimersmemoir.blogspot.com )

  • May 10, 2009 at 5:43 am

    Jim—Incontinence will not be easy…but…With it (and almost every other loss) there is a work around or a fix. Sure…They will be and are time consuming…but…You still have a feeling of some degree of control or accomplishment.

    Finding myself powerless to stop the changes is probably what will be the hardest part of caregiving.

  • May 12, 2009 at 2:17 am

    😕 *underwhelmed by responses*

    BINGO cheri…my thoughts exactly.

    All of the other aspects of caregiving…small potatoes, compared to the struggle to rise above and block out the extreme sadness and the overwhelming feelings of helplessness and despair as you watch your loved one slowly slip away physically and mentally, never again to be the person that they once were. Keeping a cheerful and positive attitude…a stiff upper lip during “The Long Goodbye.”

  • May 12, 2009 at 2:01 pm

    Yes I agree,it is having to watch that decline and however well you are caring and coping,knowing that you cannot take this illness away from your loved one.

  • May 31, 2009 at 7:43 am

    Hi Jim, I haven’t gone through the toileting thing yet, and am not to concerned about it becasue at least then I will be able to do something about it even it is only cleaning up. So far I think the hardest part for me is the lose of campanionship, no conversation and no logic. I still get fooled every day when things seem ‘normal’ only to be bought down to earth with a big thump. I think the lose of companionship of 37 years and knowing that there is nothing I can do to fix things as the get worse will be my hardest cross to bear. Jocelyn 😥

  • June 1, 2009 at 1:55 am

    My Mothers name was Jocelyn…not a common name…nice coincidence. 🙂

    Yes, Jocelyn Hi…lack of companionship was(is) an extrememly heavy cross to bear. I can’t tell you the number of nights I longed for someone to just talk to; someone who made sense. And you’re right too…every now and then there’s a glimmer of cognition and you think, “Oh, this is OK.” And then it’s not again…more frustration. It’s certainly not an easy time Jocelyn…just cling for all your might to the fleeting happy times. Such precious memories. Love is so powerful. Love conquers all.

    The chat room here was a Godsend to me…at least a semblance of sensible conversation with others in the same boat…if only virtual.

    Best wishes to You and your Loved One.
    Jim

  • June 4, 2009 at 8:08 am

    Hi Jim,
    I used to hate my name when I was young as nobody else had it.

    You are right, if it wasn’t for love we would never get through this. We are very lucky because we have done quite a bit in our life together so I have lots of good times to look back on and I can get our photos out (before digital) and say ‘remember when we did this’ so that helps.

    All the best Jocelyn.