I have mentioned in passing that my Mom has macular degeneration and dementia ( I will not give either one capital letters) and that it has been a very stressful situation for all of us. My husband and I live with Mom in the house where I grew up – childhood triggers all over the place. The change has been gradual until the past few months, suddenly it seems to have speeded up and now it is hard for Mom to remember who I am. I think I have come to terms with it, I feel so in the middle of it all that it is hard to be objective. I also realized it is stirring up all kinds of uncomfortable things as well, but I am now at a point where I can say “I’m not thrilled to deal with all this but let’s do it and clean it out”. It is uncomfortable, but then again, all the work with Ike Pono and Debye and her deep tissue massage have all been uncomfortable. However, I am still here, I have survived all of it and it feels good to have things cleared out finally. Yes, I know there is still a lot more to unearth, yet I am not as afraid to look it in the face as I was.
I have “kinda” known some things I learned growing up, it is only now that I see how it has operated in my adult life. One of them is not asking for help – it is imposing on people. I was talking to my older sister the other night and mentioned that – boy, does she know what I mean! Her comment was”Ditch it girl!”. I have had to ask for help because all of this has made me realize I am in over my head. I haven’t felt I have a handle on what todo, where to go , etc. I contacted the Alzheimer’s Association and they have given me a place to start. I have been to a couple of support groups for caretakers, plan to go again next month and also to understand I have to take care of myself as well as Mom. There are legal and financial ramifications, plus now I need to make sure there is someone with Mom all the time. That way I can go out and do things for myself and my sanity, yet she isn’t left all alone when I do go. My life has become narrower and narrower because of that. But I do have to take care of myself and what’s left of my business – not sure how all of this will come together yet.
This not asking for help, doing it alone – we very seldom went to the doctor, Mom took care of us at home. As I look back on my years of RA while we were moving around, I realize I was doing it on my own, not asking anyone for help except maybe the doc or the OT. So I didn’t really have anyone to talk to about it until I started volunteering at the Connecticut Chapter of the Arthritis Foundation. I met other people who understood, but a lot of what I did was not about me but more about giving basic info on arthritis and what the Foundation offered. Also, not talking about it because “other people really aren’t interested” as well as “you don’t tell other people your business” – now I know other people have dealt with the same thing or similar and they are there to support me. I have gotten so much support from friends and business associates – last week I talked about it in my breakfast group and found myself breaking down. I hadn’t planned on that happening, I just wanted to thank people for their support. That just brought up another one – be stoic and don’t show emotion – we do have British ancestry so I come by the “stiff upper lip” honestly.
These days I have a very wobbly upper lip, I seem to be crying a lot. Now I have always cried easily, I always thought it was a sign of weakness. I cry when I am mad, when I am sad, when I am depressed, frustrated, fed up with pain – the list goes on and on. Now when I talk about Mom and the things I am dealing with, I am a puddle so quickly ; I find when I am doing work with the massage, more puddles. I am wondering if that is just releasing and that stuffed down emotion and stuff that I didn’t feel qualified or eligible to express at the time.
We were also taught that when someone offers you something, you politely decline. Never did understand that one. I also found myself picking apart a compliment, as if I was worthy or deserving of a compliment. It took a long time to be able to just say Thank You when someone told me how well I looked or how amazing something was that I had done. I understand now that I am giving a gift in receiving a gift, whether it is a compliment or a physical object. Sometimes it takes awhile for the message to finally get through and I know that I know it.
I know my parents did the best they could – they always made us feel loved and wanted, taught us integrity, honestly, gave us discipline and boundaries we could count on and they always did things as a family. As I grew up and learned how other families operated – I just assumed everyone was like us – I began to appreciate and understand how blessed the three of us are. It is a big job to raise a child and I knew I didn’t have the patience to do it – thank goodness I married a man who also didn’t want children. My hat is off to people who do raise their children well. So now I am a parent after all.
Gift of RA 