A journal of living with Multiple System Atrophy. How we, a 58 year old woman and a 62 year old man, laugh, cry and love our way through Dennis' latest symptoms and newest diagnosis of MSA.
Sunday, June 6, 2010
The Past Week
During the practice vacation we found out that we will need to bring along the pump for Dennis' night feedings. We tried hanging it from a light, which was fine, but not high enough to force the liquid down. And the "j" tube is 1/2 the size of the "g" tube, making it all the more difficult for gravity to do it's work. The liquid food is fairly thick and it was not moving any where. I am glad that we tried it before we headed out for more than one night.
Work was not fun at all. The boss was gone for most of the week, which made me the boss. Long, long ago, when I was a young, thin and energetic teacher, I had been encouraged by many to go into administration. But, I have the temperament of my father (impatient, demanding, always right, and stubborn) and my mother (sensitive, especially when stressed, and personalizing other peoples negative ways) and I knew I would not be suited for the work. But here I was, on my last few days of work, being in charge. Which mostly means, putting up with all of the parents and grandparents of the stinkers at school. And let me tell you, those stinkers do not come out of the wombs of sane women or the sperm of pleasant and intelligent men. By Thursday I was done, and took the last two days off from work as sick days.
The retirement party was a blast. I have had several jobs, at several locations over my 22 years in education. I did not invite anyone in particular, but put it out in the district hotline that a party was to happen. A diverse group of friends showed up, and I laughed a months worth of laughs in 6 hours. There were stories shared about me that I remembered, some that I sure were made up and some that were vaguely familiar, but I am sure they were only partially true. Dennis came with me, and tried to stay until he got food stuck in his mouth and wanted to make a get away. Raquel was his, and my, designated driver, and while he left a bit earlier than I did, he had fun.
I haven't hung out much with Jane and Ralph yet, but they came to the party, too. The four of us are going to Boston in a week together. We will stay in Boston for a few days and then head to Cape Cod. There we will meet up with Donna and Louie, Dennis' sister and brother in law, for the weekend. After the weekend, Hamed and Ashley will join us for a couple of days before we head home. I guess this vacation will be the beginning of the next chapter.
So stay tuned and carry on.
Until later,
Ann and Dennis
Saturday, April 24, 2010
46 days
I assumed that Dennis had felt the need to make this appointment. Generally he sees his GP every 3 or 4 months and Nance every 6 months. But this appointment had been moved up by 6 weeks. It wasn't until after the appointment that I found out Nance had requested the earlier appointment.
As many of you know by now, Nance is far from my favorite person in Dennis' life. She has always been cold, is unable to call Dennis' disease MSA (she insists on Parkinson's) and bristles when we talk as though we have some of our own knowledge. But she was nicer, and more open this time. We spoke about hospice care, and she was helpful about the whens and the whys to move into hospice care. And, for the first time in 3 years, acknowledged my part in this horrid disease.
So now we think about what happens next. No one can put a time-frame on living with MSA. We have from one day to several million days left together. And while that could be a curse, not knowing, I want to see it as a gift given to us. Time to be together.
In 46 days, I will be with Dennis 24/7.
OMG!!! What Have I Done???????
Until later,
Ann and Dennis
Enjoying the Last of Work Events
As a Building Climate Specialist, I not only work with kids with behavior problems, but I also do a bunch of preventative activities through out the year. Wednesday is the second to the last of my schools pride days. These are monthly fun and celebratory events that are attended by all students who have not messed up behaviorally for the past month. It's a perk we all wish we could get - a fun party just for being "good."
This month's Jenny Lind Pride is a scavenger hunt. The student council and their advisor - a teacher that I really enjoy at work - came up with the idea and are helping with the event. Last year the same group put on a Hawaiian Festival. The student council worked hart at putting together stations, and Carol and I worked just as hard. It was a hit! This year, the group is less than helpful, but thankfully they didn't decide to do anything bigger than a Scavenger Hunt.
The whole point of this post is to tell you that I have just checked out the weather, and it is suppose to be warm, dry and partially cloudy. This is perfect weather for such an event. I will let you all know how it all turns out.
Until later,
Ann and Dennis
Sunday, April 4, 2010
Retirement, Yes!
I loved having the opportunity and energy to spend time with Dennis. Just hanging around the house, helping him out with his chores, his nagging me, my nagging him. going out for a movie or a ride - just being together.
I also enjoyed having the time and energy to indulge in some of my own fun. Dancing in the house to a stupid song, painting and writing, sleeping without an alarm, and eating and peeing when nature called.
I have practiced retirement for a few years now, whenever I was on a break from school. But this time was different. I was really looking at my day to day life to see how retirement fits me. And, it fits quite nicely, thank you very much.
June 10 is the last day at school. I look forward to the next chapter of my life, starting on June 11, 2010.
Until later,
Ann and Dennis
Monday, March 22, 2010
Practicing Retirement
Once again, thank you boss for being so very understanding.
Dennis felt he had a fever, so I checked his temperature. All was fine - he is running a bit low, as is usual. He was warm, but he was under the down comforter without the fan running or the windows open.
Now he is digging through a drawer of socks and underwear. He has decided to downsize. He also filled a bag with shirts before Raquel left this morning. Mostly white dress shirts, I imagine. He doesn't wear them anymore for obvious reasons (if you have ever seen him eat, it is obvious).
I imagine I am practicing retirement today. How will I fill my day while Dennis is filling his? I believe I had better come up with a game plan.
Until later,
Ann and Dennis
Wednesday, March 10, 2010
Retirement
I imagine I will work again. But for a while, I just want to spend time with Dennis. We plan to vacation this summer, as always, and then again in the fall. Nothing, other than me, makes Dennis happier than travel. As long as I do not have to go to work as soon as we return from a trip, I will be able to enjoy and relax as much as Dennis.
In between trips, I will have time to write, paint and plan my next career.
Looks like a win-win to me!
Until later,
Ann and Dennis
Saturday, February 27, 2010
Retirement?
Dennis was a doll about the whole matter, and tried hard not to ask for much from me. He also let me know that he would support any choice that I made regarding working next year. He would be a very happy camper if I decided to retire.
I am leaning, very strongly, toward retirement. (If you work with me, please do not ask me about this - I will make an announcement when I have made my decision).
I do have an appointment with TRA - Teacher's Retirement Association - to see how much income I would have if I retired at the end of June. After that, I need to meet with our Human Resources to see how many of my sick days could be converted into dollars for insurance. I know that it will most likely be a break even situation - I probably will make just enough money to cover my insurance and co-pays.
Fiscally, I suppose it isn't a very sound decision to retire. Emotionally, however, it seems to be the best idea that I have had in years.
If I do retire, I will take sometime to just be with Dennis and myself. Then I will begin one more career - what that will be, I don't know. But my bliss will find me. It always does.
Until later,
Ann and Dennis
Sunday, January 4, 2009
Tomorrow
Dennis is going to try botox for his drooling. I am not sure if it is suppose to cut down on the production of saliva, or cut back on the saliva leaving the mouth. In either case, it should make swallowing food easier. Hopefully, it will also help with his ability to speak.
As far as work is concerned, I am ready to return. I know that in a few weeks, I will wish that I was retired, once again, but today I am ready.
Until later,
Ann and Dennis
Tuesday, July 29, 2008
Planning A Full Life
I was reminded, yesterday, by my nephew and my mom, that I will be returning to work very soon. Drat. I am not a big fan of working, at least not anymore. I have been practicing retirement for many summers, and I happen to like it quite a bit. But, alas, returning to work is inevitable, so I might as well get my ducks in order now.
I need to find an alternative to Raquel for the days she does not show and days that she needs off.
I need to discuss with my boss my plan about taking Family Medical Leave. She knows and supports me, but we need to work out a plan about how and when I will take time to be with Dennis.
I need to iron my clothes. Yuck! Oh, perhaps I should wash them first.
I need to think about getting into a new routine of going to bed at a decent time and getting up in the morning.
Most of all, I need to figure out how to find the time to do what I want to do, so that my life isn't all about working and taking care of Dennis and our home. I know I can do all of this, and I also know that I will be successful in creating a full life in spite of barriers. I also know that I need to plan for how everything will happen.
I am a certified life coach and well trained in aiding others design a life that they enjoy. Now it is time for me to self-coach myself through this process. All I ask of you, my dear readers, is to notice when I seem to be falling behind in the joyful parts of life, and let me know.
I believe it is time for me to play with my paints!
Until Tomorrow,
Ann and Dennis