GRRRR Starting it again - hit the wrong button

Well, it's been a while since I've done this. I forget at times I even have a blog because there's always a lot more on my mind than writing things down. So, back to the update.

I sold my house successfully and the closing date was 1 December, 2010. Funny, because that made it 15 years to the day since we'd moved in. The only things I miss about it are the main floor laundry and the view of the cemetery out the back.

My son and his wife came to Ontario for Christmas. He spent most of his time here with Mom and me, Melissa spending time between her parents' places. I drove son to Mono Mills after Christmas where and Melissa, her father and his wife picked him up. He also went to my sister's on Christmas day to spend some time with his cousins. Mom had said she didn't want anyone coming here to see her on Christmas because she thought they were coming just to see her before she died. I didn't feel that was fair to the ones who could come because she's their grandmother, and of course they'd want to see her.

The visits here were very short. Edward made a nice dinner and the three of us ate together when he got back from sister's.

So on to the New Year. I was spending days in quiet desperation while Mom did too. Trouble is, that's how she wanted it, but I wanted to be expanding a bit, and not living in almost complete silence. It's really difficult to live one's life with only 14 definite hours away from the house. That's all I got from Red Cross through the CCAC. That was time for everything I had to do. Haircuts for me and the dog. Groceries for Mom and me. Physiotherapy. Doctors. Socializing with anyone was out of the question because there was just no time for it. And no energy. I don't know if the lack of energy was because it was being sapped from me by our lifestyle, or because of the MS. I feel somewhat more invigorated now, but my body doesn't really want to cooperate.

In February, sister agreed to help me out by taking Mom on for two weeks so I could go and visit Edward in Halifax. I loved my time there. I had freedom I hadn't experienced in months. One day, the dog they were looking after had to go out and I felt badly for it then realized I could leave the house and take it down the street for a little walk. I couldn't do that at home because I had to always be in the house to make sure Mom was ok. We went out for dinners, they cooked suppers and such and I had a great time. I didn't want to come home again. When the plane was delayed coming out of Newfoundland because of snow, I didn't mind because it was one more hour away from my daily life.

I didn't realize until I got home how truly difficult it was to keep on living my life for Mom was. The two week break spelled the end of my caregiving. Sister, Mom and I toured two retirement homes (the first one had sloping floors, seemed dirty, was old, and stunk). Mom agreed on the second one, and the date she moved in was 9 March. It was hard to get her out of the house and on our way to the place. Lots of heel dragging, anxiety and such. I felt awful about doing it. I felt as though we were 'putting her down' in a way. I guess really we were. That is clearly the second to last or last place she'll live. If she has to move again, it will be into a place that is less expensive, with government assistance because the place she's in is almost $4K a month, and she doesn't make that kind of money.

She doesn't like it there because it's not home. She won't try to fit in. Anytime I go to see her she's either napping on her bed or sitting alone in the room. There are plenty of activities, but she's not a social person. However, sister took her to where someone was playing old tunes on the piano recently, and she says Mom was clapping her hands and tapping her feet. She hasn't been there for 2 months yet.

2 April was her 90th birthday. Her two granddaughters from Barrie and their significant others came along with the twins. Brother from Alberta spent a week with his surrounding the birthday. His son and family came up for the day as well. It was very quiet and low key.

She was taken to the hospital by ambulance shortly after her 90th with chest pains and palpitations. Sister said the doctor attending started talking about a defibrillator, so she showed him the DNR and he backed down. He did however, start Mom on Warfarin and Digoxin. Her family doctor took her off of them the next week. Then last week after talking with sister and me, he agreed with my thoughts of removing many of the medications Mom is on. This to keep her comfortable, not to keep her alive. She has said she doesn't want to be here anymore, and who can blame her. Anyway, since some of these drugs have been abated, she's warmer and seems a bit brighter. Go figure. If she has a stroke or heart pain though, they will not be calling an ambulance this time but will call the doctor instead.

For me, life has changed so much in the past almost 11 months. I had my treatment and was freed of MS symptoms - certainly from having to use a walker and from the danger of having to use a wheelchair. The freedom was short lived in that I was a different kind of captive, this time to Mom's disability. Now I'm free again and have been for about six weeks. I find I don't know what to do with myself besides go grocery shopping, do physio, visit with Mom. Now though, I can walk the dog. I actually walked 600 metres one day, but that was a rare occurrence. My legs just won't do it for very far.

So I've decided I have to seek re-treatment of my CCSVI by Dr. McGuckin. He tours around to do the treatments, sharing the wealth so to speak. My earliest possible appointment here in the East is in Pittsburgh PA but I don't have a date yet. He looks at more than just the jugular and azygos veins. He also makes an impact on the valves in the veins. The valves are evolutionarily redundant like the appendix. I am truly hoping this will have a lasting impact on my MS symptoms.

In the meantime, everyone who agrees with CCSVI treatment for MS in Canada is pushing hard to have it accepted and DONE in Canada which continues to discriminate against us by not allowing the treatment here. Anyone who wants it must leave the country. Edward did a documentary for his last term at school. He sent me a sneak preview of the not finished version with strict orders to only show it to Grandma, so I complied except I let my sister see it. His teacher was so impressed that he has told Edward to go ahead and let his course load this term take a back seat to finishing the project, and he will produce it so Edward can get it out there. It will make such an impact, I'm sure, once it's released onto YouTube, Vimeo etc. Teacher wants to take it to CBC.

So I guess that's enough of an update - oops - just remembered that I intend to move to Halifax this summer. The hardest part of that is leaving Mom, but I've told her it's going to happen and I think it's time for me to start living my life at 54 years of age.

No comments:

Post a Comment