I feel like I am alone on this journey. Its a curious thing because I know many others are on a similar journey - we share so many of the same experiences, feelings, frustration, etc. And yet, no-one knows my mother in the same way that I know her. Others know her in their way. Many people know about Alzheimers, but most people do not know about how her Alzheimers is effecting her, and me, and others who remain close to her. I know it is important to talk with others about it all, for many reasons: sympathy, other ways of looking at things, ideas, advice, etc. And yet sometimes I feel I am just pushed and pulled by others' advice. There is already so much to worry about and NO clear answers or pathway, and yet others give me even more to worry about at times. But I am the one who sits with her, talks with her, understands where she is this day and why so many things do not apply to her now, and some do.
I need to accompany her. Usually I do this by taking things as they come up and trying to work them through with her so I can get as close as possible to it making even a little bit of sense for her. I accept it may not always be this way - I may have to sometime go directly against her wishes and comprehension, but that's not now. Something about it reminds me of making the decision about putting my dog down some years ago. People sometimes have strong opinions about when that should be done, but who can really know better than the person who knows and loves the dog? And knows themselves and their own capabilities. I'm not really sure why this is a parallel. Its something about my response to "you should do such and such" from people who are nowhere near the person to whom it is done, and are not in the driving seat of my life. I know people mean well too, but I can only do what I think is right - and maybe that's what makes it feel lonely.
I've been trying to think of a metaphor that best describes this experience. In some ways its like those circus people spinning plates. You have to keep about 6 - 8 plates spinning at once. If you take your eye off any they'll slow down and fall off, so you need to shift your attention back and forth. At a more pragmatic level, there are about 10 things to be done (most not simple or easily done - e.g., finding a good care facility) and the priority of which are at the top shifts. No-one knows what's going to come up next to shift the priorities. Sometimes the shift is brought about by a worried emotional response of mine to an important development, other times its a cool headed thought through solution. Its seeing a problem or hazard in its early phase and trying to shove a support structure under it.
And its exhausting - plenty would agree with that!
Doing the right thing by someone you love with this disease is a challenge like no other - I do know that.