Gift of RA

Some days it is hard to visit my Mom as the dementia continues to take over her life.  I sometimes don’t recognize her as my Mom sometimes – who is that old woman?  But she stays essentially my Mom, the woman who gave birth to me and raised me with my two sisters.  She and my Dad did a great job of making me (I won’t speak for my sisters) feel loved and wanted, taught me integrity ( my sister Ellen feels they gave us a great gift in that, I hadn’t thought of it before and I am glad she said it) as well as honesty, respect for other people and their property.  They gave us discipline too – when they threatened with “warming your fanny”, I knew they would carry out the threat.  They always felt kids needed to have boundaries and they would test those boundaries to make sure they were still there.

I saw Mom on Friday and she was doing well, alert and aware.  Maybe it was sitting at the dining room table instead of the recliner with a throw over her that made the difference.  My neighbor Delores called in the morning and asked to come with me to visit Mom.   She took some sugar-free chocolate and a mandarin orange for her – I took the cookies just in case.  We did have a nice visit and I think I may be getting more comfortable about just seeing how it flows.  At one point I read some of Candy’s new book and Delores really liked it – so I have lent her my copy for her to read.  She also thought “The Translucent Heart” was good as well and I lent her the pages I printed so she could read the whole thing.

I had a long email from my sister Candy the other day; she was writing from her perspective as a daughter living many miles away.

 I feel I can really only communicate from the other side of the veil now. Strange to think that all the things I used to be able to do for her are useless now. No phone conversations, no books, only cards and toys and treats–and who knows what gets through from this side of the veil. I think we have each taken our turn with her process. My Sunday night phone conversations took us through memory lane, then deciding what to do with certain precious family heirlooms (part of the reason for my long list), and then through the disorientation and waiting for the train, which was always a time of reassuring her it would all be fine, and that she would find Daddy and Josephine and friends and family on the other side, and that her daughters would eventually come to join her. 

I also think about our different experiences of Mom in various stages of life and from our different perspectives. As the youngest, I got to know a mother who began to gain self-confidence when she started volunteering at the airport and hooking rugs. She told me that she had no self-confidence before then, even with all the love she shared with Daddy. I think I would have been around eight or ten when she started volunteering at the airport, so the two of you would have been either out of the house or migrating out of the house into adult lives just as Mom was getting some confidence and perspective on herself. I got the benefit of being around in my twenties, too. I could visit Mom and Dad quite often, without all the holiday craziness. Just being there, yet even at that, still not that often. But I saw her in happier times when we were all healthy and independent. 

I often wonder what Ellen’s perspective of growing up is; as the oldest, she saw two join the fold and I’ve often wondered how it felt to go from the only child to an older sister.  Mom and Dad were learning about kids when she was born, so when I came 4 years later, they were more experienced.  By the time Candy came 6 years after that, they were much more relaxed.  It is fascinating to realize how growing up with the same two parents can be so different for each child.

Some of the early childhood training seemed to be about being self reliant; don’t ask for help, don’t bother people, do it yourself.  In many ways that is a good thing, but I realize now that is how I dealt with RA from my diagnosis – not the best way to do it.  But that was my subconscious training, along with not complaining, or at least, not too much.

So many people would tell be I have such a positive attitude about it, plus how I do as many things as I do.  My first response is that I didn’t think I had a choice, I had to do something about treatment for RA.  As for the positive attitude, they had no idea how depressed, discouraged and crabby  I could be only Eddie bore the brunt of that.  Maybe I hid behind a positive attitude, after all, I got a lot of positive feedback.  People would tell me they admired me and how well I do with RA – now that I think of it, maybe I thought it was the one thing I was successful at doing.  Is that why I let it become my identity for so many years?

I have written before how Mom’s dementia has helped me see much more clearly my childhood programs carried into adult life – real gift, though uncomfortable at times.  I am finding that gift is continuing as I become more open to seeing the truth rather than my perception of the truth.  Maybe that is part of Mom’s purpose in this lifetime.