The Test

I was just becoming satisfied that we had worked out all of our issues regarding personal care attendants, when JoAnn told us, a few weeks back, that should would not be available on Fridays for the month of January. I simply asked Raquel and she said "yes." So I was cool and relaxed when Raquel asked me today if it was next week that we needed her on Friday.

I said yes and Dennis yelled out a huge 'NO!'

As Raquel tripped off to the other room, we began a slightly heated discussion. It might have gotten hotter, but a guy was here fixing an installation problem with our blinds. Neither of us were in to looking like complete fools.

I understand that Dennis wants time alone. I love being alone in my home, and I don't get the opportunity very often. No matter how far away the PCA stays, he is still never alone. I feel the very same way about his presence. But, in reality, it's not the same. I can do anything I want to when Dennis is here. You do put limits on yourselves - like the really good fight we could have had - when someone else is in the house with you.

Oh the other hand, he has not proven to me that he can take care of himself without someone here. He believes he is capable, at least for one day a week.

So, a test for the rest of vacation, seems to be in order.

We are home alone for the next 5 days. If he can show me that he can get out of bed, get dressed, feed himself and get around the house without my help, I will give in to his request. I will not feel at ease, that day at work, but I will give him back his independence, at least one time.

Until the next time
Ann and Dennis

Vacation

When I have time off from work, I always think about retirement. I enjoy sleeping without an alarm and living without an agenda. Eventually, however, Dennis wakes up and begins needing me for this, that and the other.

I do love helping him. I have learned to enjoy almost everything about giving him the care that he requires. We even have a pet name for me, when I am giving care - Bec N Call. But I only love helping when I am not doing it full time.

I am not a natural born care giver. I am sure that if I had ever gotten around to having children, that I would have hired a nanny to do at least half of the work.

It's not that I am lazy, I just need lots of variety in my life. It is not out of a lack of love, either. I love, love, love Dennis. I want to keep that love, too. Taking away my entire independence is not the way to keep my love strong.

We seem to have found a good balance that is working for us, at least right now.

And that is all I have to say for today.

A Dance

First, let me say how lazy I have been lately. The very idea of writing has had absolutely no intrigue to me at all. Maybe it is because winter, so far, has been very cold. Maybe it was the London break, and the cold, virus type of stuff that followed. Whatever, I became a bit down and uninterested in keeping any of my goals alive and well and fulfilled.



But today, I feel a bit lighter.



Perhaps it was finishing the wrapping of presents. Maybe it was setting the table for dinner tommorow. Then again, it might just be that this is the fourth day that I haven't had to go to work.



But, I really think it was the dance I had with Dennis today.



Dennis loves rock and roll. Me, too, but only the lighter stuff. The kind of rock that a girl can join in singing or dancing.

Dennis loves it all, but today he wanted to hear one of his favorites. We bought a new Bose Wave for ourselves, and he wanted to play one specific track. It was a great slow song. He knew the words, and I knew how to wrap my arms around him and hold him up.

We danced the entire song. One whole rotation around in a mini-circle. He sang the entire song. And I lost my tiredness.

I am back.

Until tomorrow,
Ann and Dennis

Doctor Visits

We are set for the next Mayo visit in January. This is the test where the force radio-active materials through Dennis' veins. The test that will definitively answer the question, "Is it Shy-Drager or something else?"

Dennis also has an appointment for botox injections in January. These are suppose to help his drooling issues. His doctors all approve and we are both hoping this will be the answer to the most pesky of problems.

Tomorrow it is a visit to urologist for a catheter change. They will also check for a bladder infection if Dennis remembers to ask for one. He has been a bit under the weather and he was thinking perhaps . . .

I also need to call his general practitioner about his depression. He is understandably depressed, but I hate the idea that it can keep him from living as fully as possible.

If nothing else, his life is full of doctor visits.

Until tomorrow,
Ann and Dennis

Life

Right before we left for London, I received a call from telling me that Larry, an old friend of mine was in the hospital. I did not have time to visit him before we left, but I knew that he had family and friends around to be with him.

Today I called to find out how he was doing. He had been diagnosed with pancreatic cancer, is non-responsive and has only days to live.

I think this is the way that Larry has chosen to go out of this world. He lived his life his way, and spending time in a doctors office, even if it meant living for several more years, was of no interest to him. Until right before Thanksgiving, he ignored the fact that he hadn't been feeling well. He will die quickly, if not a bit too soon.

Dennis looks at life so differently. He wants to live and tries everything he can think of to extend his life for many, many years. He fights hard to live a great life.

I can respect the way Larry choose to live his life. But I not only respect Dennis' choices, I also admire the way that he has decided to live his life.

Thank you, Dennis, for being strong and for loving life.

Until tomorrow,
Ann and Dennis

Conversation

It was back to work for me, today. My body clock is still confused and I was wide awake at 3:00. By the end of the day I looked and felt worse than the proverbial dishrag. But I made it through and I should be feeling quite normal in another day or two.

I was asked by so many people how the trip went. 'It was a great trip,' was my first response, but most people went on to ask how Dennis did on the trip. I told them great, but then went on to tell them the best part of the trip was having conversations with Dennis.

Dennis' best speech hours are after his morning meds and breakfast and before 4:00 in the afternoon. By the time I get home from work, his speech is close to incomprehensible. On Saturdays I am exhausted from work and care-giving, and I don't feel like talking. That leaves us with Sundays, but then that pesky game called football begins right after our late breakfast.

So, for me, one of the highlights of going to London with Dennis for two weeks was having the hours between 10:00 and 4:00 for conversation. We didn't talk about anything important, but we had the time to talk with each other.

Until tomorrow,
Ann and Dennis

Home, Again.

Ah, back at home again. So bittersweet. There is nothing quite as comfortable as your own bed. Even if I don’t enjoy cooking everyday, there is an easy feeling when you can easily reach for just the pot you need without opening several cupboard doors. At the same time, you are at home and not exploring new spots and meeting new people each day.

During our last trip to London, we met up with Poppie, one of my online friends. This visit, we not only saw Poppie again, but also met Lola, another online friend. Of course, we also spent lots of time with Jane and Ralph.

Shiva greeted us at home with lots of love. She was well taken care of, but still has not let us out of her sight since we returned. She finally stopped purring sometime this afternoon. Even if it's only a cat, it is nice to know you have been missed.

I have lots of London stories, so please stay tuned. Now that my computer is back in working condition and we are back home, I have no excuses not to write. Drat!

Until tomorrow,
Ann and Dennis