46 days

This past week I have had a string of calls from Raquel trying to set up an appointment with Dr. Nance, the Parkinson's specialist. She had been contacted about an 8 AM, a 7:30 AM and one other strange, impossible appointment time. Then she called about a 4:10 appointment last Wednesday. This seemed doable and we set it.

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

There are some parts of work that I will miss. They mostly belong in the creativity vein. I will need to consider new ways to fill up on creative energy.

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

Delays

Who is ultimately responsible?

We have been trying to get Dennis an electric wheelchair for more than two months. At first the problem was his crashing into walls, but another vendor found a chair that would work for him. It was selected 7 weeks ago.

Then there was the messaging between the OT and Dennis doctor; unclear messages, incomplete messages, and unanswered messages went back and forth. Next, both the OT and the doctor went on vacations. But now it is simply paperwork.

Last week I called both the doctor and the OT three times and was assured all was ready. The OT had faxed over the necessary forms to Dr Kiefer and he had sent them on to LTC Wheelchairs, "The Wheelchair Experts....Let our wheels do your walking!". Finally, everything was ready and a wheel chair was set to arrive soon.

No word from anyone as of yesterday, so I made more calls. First I called Rick, the OT, and he told me to check with LTC. LTC said Rick had not filled out his bits of information, so it had been sitting on the desk for another week. I called Rick back and told him what they said, and, while befuddled, he said he would take care of everything. Then I recalled LTC, and they assured me they were ready to rock and roll.

However, they cautioned me, there may be another delay due to insurance. They may want a preauthorization from yet another doctor.

What?

All this means is Dennis will nag me about calling, I now need to nag four people instead of three, and it will most likely be another month before he is able to sit in his shiny new wheel chair and

Ride, Captain, ride, upon your mystery ship....

And who IS ultimately responsible? Me, I guess.

Until later,
Ann and Dennis
(54 days, 7 hours, 18 minutes to retirement)

Missing You

One more poem by Dennis.

Missing You

I don't bite my fingernails
I don't gnaw on bones
I don't stand in orchards
I like the pines alone
I don't walk with thistles
I can't see the storm
I don't win the roses
But love with you reborn.

Waiting

I have been waiting for Dennis for almost 2 hours. I probably will be waiting for at least one more hour. I should know better by now.

First it was a 2 hour breakfast. That was fine, I expected that. But then he needed to poop. Which is good, because we are planning on a road trip today. But I hadn't expected him to sit there for over an hour.

I wouldn't care, normally, but I don't feel like driving home in traffic. We are headed south, along the Mississippi, hoping to see the bald eagles. It's about a two hour drive each way, and if we don't leave before noon, we will be coming home during rush hour.

2 weeks later....

Last night Dennis kept me up all night, turning him, lifting his head, nightmares..... I was, at the very least, polite this time...and yet...

(I know, too many....'s in this post)

This morning, when Dennis begged me to stay home from work, I did. I was exhausted, and he needed/craved attention from me. So I rolled over and tried to make up for no sleep. But he was still needy, even after the alarm called me to attention. It was only after he was sitting up in his wheel chair that he finally declared that all was right with the world. And I was exhausted.

But, all wasn't right with the world. He had a 2 hour poop, and then ate a bit. Then another 30 minute poop, and off, with Raquel, to the Courage Center at 1:00. We had been up, officially for 6 hours before they left the house. He wasn't moving well at all.

I am concerned, worried, and trying not to be concerned and worried. But he is slowing down, noticeably, lately. More to come.....

Retirement, Yes!

Looking back over the past week, I know am positive that I will be good at retirement.

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

Mirror, Mirror

Today was a reality check, big time.

In the past few years, I have gained weight - a few pounds at a time. When Dennis and I first met, I was fitting comfortably into a size 6. During our first vacation, in Bermuda, I looked like a knockout in my red and pink and white bathing suit. I still have the picture to prove it!

Enter menopause, middle age, a more negative, stressful work environment, family genes, and the drastic changes in our lives, I have doubled my dress size. I am learning to accept the new me, and I know that I will never be the 40-something year old in her bathing suit again. But I really wasn't ready to accept......

....that.....

....I may never wear a bathing suit again.

I had ordered two bathing suits from Miracle Suit!!! Look 10 pounds lighter!!!! I was hoping one would work. They came Thursday, but I only, just today, tried them on. I didn't like what looked back at me in the mirror so I walked out to get encouragement from Dennis.

Dennis just laughed, and told me he still loved me.

I guess if I can still love him, he can still love me, too.

Until later,
Ann and Dennis

Oh, and size 12 may not be big, but going from 6 to 12 in 1 1/2 years is a biggie.