This is not how it is supposed to be.

Artgirl

Everyone ~ hello!

I started this thread after a Womens gathering in our church and seeing a speaker give a wonderful talk that relates to SOOO many of the things that a caregiver can relate to. The above subject is the title to her book - in which she shared her own personal story.

Being new to this select group that no one really wants to join (lol) and not really knowing what we were getting into we have watched a rapid progression of symptoms of this disease - still in process, all while waiting on doctor appointments after moving to a smaller city. My husband and I take care of my mom after she came to visit us in another state. We moved and we did not notice too many changes as we were too busy unpacking, job hunting. Helpful hint: I keep a journal/diary to see how often things are taking place. This also helps me keep on point with a pocket calendar for her hygiene as she will not tell us anything!!

Please feel free to direct message me or to add to this thread as I would love some communications!  

SusanB-dil

Sounds interesting - where/when would the book be available?

agree - would rather not have to be in this group.  Very glad it is here, but....   

We (spouse and I) should start a journal - keep track of the 'better' days and the 'not so much' days. It might help when she has doc appts, as well as give us some clue of her 'trajectory'.  We are taking care of his mom, and brother and his wife are taking care of my mom. Both are well into 'stage 5'.  Some good (better) days they may step into 'stage 4', and we have seen signs of 'stage 6' with both.  Would be good to see if there might be any 'trigger' to having a 'better' day.  We already know there is no rhyme or reason.

Arrowhead

I began keeping a journal six months after my wife’s diagnosis five years ago and I’ve referred back to it many times. I also keep a timeline of events; listing such things as tests that were run, when she began and ended taking certain medicines, when she gave up certain activities, changes in behavior, and other such things. These have been helpful to me and I’m sure they’d be helpful to others as well.

Artgirl

SusanB-dil,

The book title is:  It's not supposed to be this way, Author is: Lisa Turkeurst, and again she has told her own personal story. NOTE: These are not specific to AD. She has published many books on her life journey.  Another one is:  Forgiving What You Can't Forget.