The Walker

I have been planning on buying shoes for 3 weeks, but illness stood in the way of shoe happiness. Yesterday, Dennis and I ventured out to my favorite shoe store. We returned with 3 new pairs for me and a new TV for him. No, he did not buy the TV at the shoe store, but after finding the perfect black pair of heels, I just had to bring him to Best Buy.

Yes, shoes make me happy, but Dennis made me even happier yesterday, by using his walker.

There are a few reasons using the walker makes me smile. The first is purely selfish in nature. The walker weighs about 120 pounds less than the wheel chair. When he takes the wheel chair, I lift 300 pounds getting it in and out of the car, for each stop we make. If we make 3 stops, that adds up to 900 pounds, plus 300 pounds for the beginning and end of each trip out of the house. The walker, weighing in at 30 pounds, saves me 960 pounds of lifting! That is so close to 1/2 ton, that it makes me weary simply thinking about such weight.

The second reason is about Dennis, not me. It's simply good for him to walk as often as possible. When he takes his wheel chair, even when he uses it as a walker, he always can opt out of staying on his own two feet. When he walks, he feels more independent, he gets a good workout and he stretches out those leg muscles.

So, Saturday was a happy day for both of us. I found some great shoes, he bought a new TV for his games and we both came home feeling good about the day out on the town.

Until later,
Ann and Dennis

Changes, Care-giving and Other Such Stuff

It is Saturday morning shower time for Dennis. Once we get his poopy butt clean, he sits in an IKEA metal chair for the rest of his shower. At this stage of the shower, I get about fifteen minutes to myself.

We purchased a baby monitor a few months back, and it works like a dream. I no longer have to sit in the bathroom to watch for problems. Then we bought an extension shower head, so he can turn the water off and on by himself. These to simple solutions bring me 15 minutes of peace on Saturdays.

As a care-giver, I have learned to relish these moments of worry free times. Sure, I still need to be here, and yes, I must be attentive, but it still gives me a few minutes of hands off care-giving.

When I was a young teen, I hated baby sitting and decided never to have children. And here I sit enjoying the freedom that a baby monitor gives to me. When I was an older teen, my grandmother, Ho Ho, needed to have help when my grandfather went to work. I adored her, but really did not like looking after someone who needed help. When I first went to college, I wanted to become a nurse, but I found out. I did not really like sick people. Yet, here I am.

Life stands in the way of plans and contradicts our belief systems. I always knew I could never do what I am doing, today. Yet, I suppose I must have been wrong. What do I believe now? I am not sure, not quite yet, but I think that it is much different than what I have always known to be my own reality.

Until later,
Ann and Dennis

Predictability

Dennis' MSA symptoms seem to have hit a plateau, for the moment. After Ireland, he was very tired, and then the surgeries set him back a bit. But, since his catheter fell out last month, he seems to be doing fairly well. At least nothing new has popped up for a while.

I have learned to enjoy these times. Some have been very brief, others quite a nice amount of time. I have stopped worrying about when it will end, and instead enjoy the time at the plateau.

I easily adapt to change, at least, for the most part. Actually, I thrive on change - if it isn't constant. Even so, the changes in Dennis aren't exactly celebratory in nature. So, instead, I celebrate the non-change times.

Right now, I know how the mornings will look. I understand and am able to deal with the best and worst case morning scenarios. I know how the day may go, whether he is with me or with one of his PCAs. We may not lead the most exciting life, on a day to day basis, but we still have our home, travel, friendship and a complete and total love for each other. So, predictability, at least in this case, is wonderful.

And predictability is what I am celebrating today.

Until tomorrow,
Ann and Dennis

InFuckingCredulous

There are very few movies that include Anthony Hopkins, that I can identify personally with and find any thing to like. However, there is some old movie about puppets, some Ann lady (who made movies with the likes of Elvis and Mathau) and a word that incorporated "FUCK", in the most precious of terms. I cannot remember the exact words this Ann used (I will hate myself in the morning for not remembering her name), but I like the way she used this stupid, and yet, meaningful word.

It is infuckingcredulous that no one gives a shit about a parkisonian type diseases. I was looking through the social security act information, and medica and medicaid, and there is a short sentence about exceptions. Lou Gehrigs/ALS disease is exception to almost everything. You are able to receive help if you are diagnosed with ALS. Medicaid is automatic if you have ALS. A person can receive full coverage for health care, care attendants, insurance, etc, if you have ALS/Lou Gehrig's disease.

Are you telling me, that in order to receive the care that you deserve, you have to be diagnosed with a disease that is named after a well known coach of a popular US sport? Yes, I think the government is telling us exactly that.

I work hard at fighting against my own fucked up thoughts. I know I have my own prejudices and my own bents on what is right and what is wrong. But Lou Gehrig's and a parkinsonian disease are basically the very same thing. They are all about your brain not functioning correctly. They are all about your brain not sending your body the messages it must receive in order to live in an ordinary sense. And, they are all about receiving proper care, if they are not functioning correctly.

Excuse me, feds and others. But Dennis is not a popular sports figure. But he has supported, obnoxiously, sports for his entire life. His disease is no less than Lou's disease. His disease is not much different than Lou's disease. His disease, at the very least, is not less than his. He is not as well known, but should he be treated less because he has not made notoriety because of a sport?

This is unacceptable behavior, by each and every one of us. Okay, I have had my tiraid for today, but they are not done. This is not fair treatment. This is not okay.

Until later,
Ann and Dennis

Looking Back

I put my last day in at school today. Sigh. I am exhausted. I can't believe how much has happened since last year at this time.

Dennis has been in the hospital twice
Dennis has gone from a walker to a wheel chair
We moved into our condo
We went to Paris and London and are planning our trip to Ireland
I lost a best friend due to Dennis' illness
I gained a bunch of friends and buddies due to Dennis' illness
My father died suddenly and unexpectedly
My mother needs more of her children's care than before
My sister married and moved to London

Whew. I get tired just writing this list.

I am in the process of reading a book called The Diving Bell and The Butterfly. It was made into a movie a couple of years back. I have never seen the movie, but I purchased the book for my mom a year or two ago. When we were staying with mom, after dad's death, I found the book and read it one sleepless evening. I am re-reading it now for an online book group. It's inspirational, touching, and reminds me that life could be so much more difficult. And it could.

This has been a difficult year, but also a year filled with love. Some days, love is all we have.

Until later,
Ann and Dennis

Freezing

Every once in a while, Dennis freezes and is incapable of initiating a move. Today he had one of those episodes. Naturally, we were outside in the first rainy day for the past 30 days.

This time, he could not lift his foot to get into the car. He just stood there, rain pouring down on both of us, completely unable to move. After standing there for a ridiculous amount of time, I tried to lift his leg by grabbing his calf. I couldn't budge it. I attempted this same rescue a couple of times, before finally succeeding by grabbing the tab on the back of his shoe. I was able to move his foot up and into the car. He was then able to get the rest of his body moving, and into the car.

This is a short post. Either blogspot is working funky or it's the Vista, again.

Until later,
Ann and Dennis

Listening and Talking

When I arrived home today, Dennis shared the good news that he was up at 8:30 this morning. In addition to getting out of bed early, he ate a huge breakfast, did some weight lifting, walked outside for a while and was cheerful. A nice change from yesterday.

His drooling is getting beyond pesky again, though. His botox has worn off, and his nurse practitioner is reticent about receiving another injection. She is afraid that his pneumonia last month was, at least in part, exacerbated by the injections. This was disappointing news, as his speech is so difficult to understand under the best of conditions. The more saliva he produces, the more difficult his speech is to decipher. The injections were the first intervention that helped even a little bit.

What all of this means for me is, simply, we are not communicating as easily. Dennis is the talker and I am the listener. Okay, those of you that know me well, know that I love to talk, too. But, I am basically lazy, and if I am around someone who likes to talk more than me, I easily acquiesce. Dennis likes to talk more than I do, so I have become the listener. It isn't easy being a listener, however, when the talker is so difficult to understand.

We have played these roles for so long, it is difficult to change. I simply need to become the talker, once again, as Dennis takes on the role of listener. I have a feeling, deep down, that the transition will be much easier for me, than it is for Dennis.

Until tomorrow,
Ann and Dennis

Dennis Is Not Alone

I have been receiving a few emails from care-givers, lately. It seems there are a few undiagnosed Parkinson's related diseases existing in the world. They all have quite a bit in common, but none completely match what Dennis is going through.

Something is fishy. I don't believe anyone is out there, hiding the truth from us - I am not a complete nut - but, there seems to be a few too many undiagnosed, neurological disorders that is complicating the lives of too many baby boomers.

Or, perhaps, these diseases have always been in existence.

It really does not matter. Dennis is suffering from a disease his brain is controlling. Or, perhaps it is a disease that his brain lacks control over. We don't know what it is, this nasty thing. There is no stopping this disorder, not right now. We can somewhat control the symptoms, but we cannot stop the progression. Not today.

I hope someday the medical world will figure out how the brain works, how to fix malfunctions and how to keep the brain from interfering with everyone living the best life. This most likely will not happen in Dennis' lifetime. Maybe none of our lifetimes. But it seems to me, it should be at least pursued a bit more aggressively.

And now.........

Dennis' most recent visit to the Struther's clinic revealed one more problem that will be keeping the two of us our toes. Dennis is in the early stages of diabetes.

Those of you that have spent time with Dennis, know about his passion for Coke, pies of any flavor and ice cream. You will not be surprised at this diagnosis. While I was not caught completely off guard, I still was not prepared.

I must admit being tired of learning about medical conditions and all of the related issues that accompany any illness. I feel like we are still trying to learn about how to deal with his swallowing problems. And now a new diet issue to incorporate into our lives.

We are taking the day off, today. We slept in, took naps, ordered pizza and watched movies. Tomorrow we will have the energy, once again, to deal with the changes life brings.

Until later,
Ann and Dennis

New Changes

Raquel is off for three days on personal business. Our back-ups were unavailable, so I am home to be full time care-giver. Unfortunately, he does not see me as his PCA during this time, so I don't get paid. But I do get all of his undying attention.

Today we went to the urologist. Dennis has decided that he wants a different catheter; an upper pelvic cath. Instead of going through the penis to the bladder, this one goes directly to the bladder from below the belly button. It sounds strange, but not much stranger than anything else we have encountered over the past few years.

It was only a couple of years ago that Dennis began to collect canes. Just when his collection started getting interesting, more changes came along. It was diapers, layered, to prevent urine leaks. Next it was a walker, then a catheter, and now a wheel chair full time. He tucks his chin to drink, and mushes and chops his food to a "mechanical soft."

Ah, you have heard all of this before. It's just one more change, just one new and different experience. But we aren't living in his body, are we?

I am so sorry, Dennis, that your body has decided to fail you. Just know that you are still loved, and I am lucky to have you in my life.

Tired

Dennis gets tired too easily. Well, maybe it's just too often.

Last night I came home from work, and he had just finished a session with the in-home PT, Phoebe. He was sitting in front of our new, big screen, LCD TV and practicing tennis on the Wii. He was feeling feisty and challenged me to a game of bowling. Neither one of us played a good game, but he challenged me to a second game. After the second frame, he was done.

I had picked up stuffed chops for dinner, and cooked them while we played. I chopped one up nicely for him, and halfway through dinner, Dennis wanted to go to bed.

Tonight he was in his office when I came home. The phone was ringing as I was walking up the steps, but he wasn't able to pick up the call.

We didn't spend any time together today. He was just too tired. Too tired to talk, too tired to eat, to tired to do much of anything.

Vacations are our real measure of how we are doing. Last summer, while in Paris, we took off about 2 days a week, due to tiredness. This fall, in London, it was closer to 3 days a week. But, giving that I was sick for half of the trip, it seemed a bit skewed to be considered real data. During this years spring break, we were at an every other day rhythm of fun and rest. But we were at home, and it was more about relaxing than anything else. We have slowed down, but both of us rally for real vacations.

We have been considering how long to take off for vacation this summer. How long can we rally? How many days will be down days? How much do we really want to see?

It's a question that we need to answer soon.

No Wonder I Am a Cynic

Yesterday, Dennis went to visit his family doctor. Dr. Keifer is the one who Cigna denied as a family practitioner, and held up a few of the insurance claims. I asked him about his credentials, and he told me he has been, always and only, a general practitioner. He has no ENT interest, let alone specialty. Should I call Cigna and let them know?

No.

Today, I went to the pharmacy to pick up one of Dennis' meds. His insurance refused to pay, because his coverage had been terminated.

I wish I could say nice words, but none come to mind.

So I came home, called Cigna, who told me I had to call Medco (his drug coverage), who told me I had to call ADP (where he sends his Cobra payments). I spent the next hour and a half on the phone, once more, talking pleasantly to people who try hard, but aren't able to accomplish much of anything.

I asked the guy, who happened to answer the phone at Cigna, how many calls had been placed on Dennis' behalf since January 1, 2009. Over 75 calls, most of them from one of us, have been generated to fix Dennis' insurance problems. This does not take into consideration the calls to ADP or his drug provider.

No wonder we have been sleeping so much during my spring break.

The Silver Lining

No matter how crappy life gets, if you look, something good shows up.

Because of the latest incident of pneumonia, Dennis will now have the services (covered by insurance - HA!), of an RN coming two to three times a week. We met with her today. On Monday or Tuesday, we should hear from a physical therapist to arrange for home visits on a weekly basis.

A year ago, Dennis would have outright rejected the help. Now, although he downplays the necessity, he accepted the offers.

Right now we need this. Dennis is vulnerable, under the care of highly unqualified people. I have absolutely no qualifications, other that a fairly good intuitive sense, to take care of a disabled person. His PCAs, both nursing assistants, have more experience than me, but aren't qualified to do much, medically, either. Even if it's only 60 minutes a week, having a trained and licensed nurse in to take his temp, check his heart, lungs and oxygen, it is more than what we have going for us right now.

Even though today started out rough - with a blood pressure rating of 65/40, it improved all day and ended up with some good news.

Ann and Dennis

We Are Not Happy

I try very hard, these days, not to get angry. I am suppose to be mature, at 56, and I am suppose to have learned to control my temper. I am also suppose to be a role model for the children that I work with. In addition, I am suppose to have learned something about the advantages of control and assertiveness, over aggressiveness and being overtly pissed off.

Most days, I win at this game. Some days, I do not do as well. When I am tired of a fight, or I find no sense in a particular stance, I do not do as well as I wish I could. I don't feel too guilty; I am sure most of us have a particular weakness that does us more harm than good.

But I am sick and tired of this insurance business. I imagine that a big part of the problem is that I do not understand the rules. I barely understand simple insurance, let alone, the complications of a Cobra account. I really am not looking forward to Medicare or Medicaid, whatever it is that Dennis deals with next.

This is not right. We throw good money at insurance. We expect our insurance companies to protect us, not fight us. Maybe the whole idea of insurance has become a joke. I, as a consumer, could not argue that insurance has been our friend.

I know that I am naive about matters of making money. Money has never been my number one priority. But I am not stupid, either. I do not like being taken advantage of, as a consumer, and I will fight back when I feel that I am.

And I must quit now, before I say something that I will regret for a long time. And there is something rather sad about that statement, too, isn't there?

Until later,
Ann and Dennis
being screwed by big companies with big money

The weekend

Maybe this is a entry for a list. Bits and pieces of tiny items that just beg to be shared with someone. And you are the lucky recipients of this non all-inclusive list of the ups, downs, and stories of our lives recently.

Insurance

1. Our insurance woes continue. We have been dismissed by Cobra, who holds his insurance, by being told Dennis is only covered by an HMO in Wisconsin. There are no HMO's in Minnesota. They are not budging.
2. ADP, a data processing company, appears to be trying to help us somewhat, but they get the very same answer as Cobra. At least the woman working with us now calls back when she is not happy with the answers given to her.
3. We will contact Ikea directly this week, as well as the Minnesota Attorney General in an attempt to get everything put back into some sort of order.
4. Meantime, the bills keep piling up, and for the most part, the service providers have been more than patient with us.

Work (for me)

1. We made a decision that I would cut back to 4 days a week for next year. One week I will take care of Dennis, to cut down on PCA expense. The next week I will have time to myself, without worry about care-giving for a period of time. We will need to cut down on a few expenses, but now that we have furnished our condo, and really don't need anything new, this should work out okay.
2. I have a countdown until the end of the school year, and I have less than 89 days until my summer vacation. If you remember, the work schedule is one of the best parts of my job. I don't do summer work, and hopefully never will need to work for the money.
3. The long, cold and wet winter made it difficult for teachers and kids, but all of the prevention measures that I put into place this year, have still made my job easier than last year.
   
4. As education goes, especially under our extremely right winged governor, we are facing yet another budget crunch for next year. For the 10th year in a row, we will be facing astronomical cuts for services to our students. We still hold out hope for a change under the new administration of our federal government.

Our weekend

1. Saturday we both had our eyes tested. We both still have healthy eyes, thankfully. We also have both improved eyesight for distance. Unfortunately the changes were significant enough to demand new lenses.
2. We both picked out a new frame -Dennis purchasing one of the bendy frames with bendy lenses and me finding a new funky frame. I guess we will still be fashion plates as we get older and older.

That seems like enough for now.
Until tomorrow,
Ann and Dennis

A Bit More Blood

In honor of Dr. Suess, the first Monday in March is Read Across America Day. At our school, they celebrate this by having tons of guests, teachers, volunteers and parents inundate the children with one of the favorite picture books.

I dressed up as a little old lady, introduced myself as MaMa Osterhus, and told the children the story of the old woman who swallowed a fly. I was a hit. So were many others. But, it also was a long day.

Dennis was in bed, reading the mail, when I walked in. He wanted to get up and get to his room to pay some of the bills we had received. I helped him to a sit up position, put his chair in a good position, and at his request, left him alone.

Ten minutes later I heard a thump.

His already bent up nose has a new bend in the bridge and two more small cuts adorn his face. He still looks better than Mickey Rorke, but he is catching up, slowly.

Until Tomorrow,
Ann and Dennis

Cabin Fever

This has been one of the worst years for cabin fever in a very long time. Of course, my memory is short and I may have said the very same thing last year. But, for at least today, I say it most emphatically - everyone I know is suffering from the winter yucks.

The kids are really icky at school, and we are all running out of patience. The adults at work are the second signal that this winter is way too long and crummy. We all want the kids, and their parents, to go far, far away. We want each other to go far, far away. No one is happy.

Tomorrow is Jenny Lind Pride at school. All of the students that have been referral free for the month get to spend a little bit of time having nothing but fun, fun, fun. It's a ton a work for me, but the kids that attend, love it. Most of the staff enjoy these events, but some (the curmudgeon, for one), seems to feel that an hour or two a month is too much time away from academics.

During the fall and spring, these people don't bother me too much, but during the winter, well, it's a whole different story.They really bug me during cabin fever time. In my mind, everyone needs to enjoy life a bit more. I imagine that I really bother the overly serious, as much as they bother me.

It's time for spring.

Until later,
Ann and Dennis

An Extra Day Off

Today is President's Day, an extra day off. Dennis asked his PCA to come in late, rather than not come in at all. I am going to be care free, for a few hours.

I have been sitting here for about 15 minutes, re-reading that sentence. I guess I have nothing else to say right now. So, there it is. I will be care free for a few hours. And that is enough.

Valentine's Day

Happy Valentine's Day!

When Dennis and I were a younger couple, he would send me roses on Valentine's Day and have them delivered to my work site. A few years ago, I encouraged him to stop this insanity. The roses at Valentine's Day were too forced, and died within a few days. He didn't argue, and the deliveries stopped.

Today, I was called to the office during breakfast duty. The most gorgeous long stemmed, scented, red roses in a crystal vase were waiting for me. The card read, "Remember when I used to send you flowers?, Love Dennis."

I love this guy.

A Substitute Teacher

The speech therapist at school is on vacation and we have had a substitute all week. I usually try to meet all subs and give them a heads up on difficult children and our school expectations. I found this particular woman while she was talking with a group of some of my favorite classroom teachers. It seems they had worked together in the past, and had enjoyed each others company.

Yesterday, she came to me and asked if we could speak privately. It was no big deal, but it ended up in a very nice conversation.

She is has stage 4 cancer. To look at her, you would never guess that she has a life sentence hanging over her head. She has chosen to live each day full of joy and full of life. She is living focused on what is right and not on what is wrong.

She and talked about how a person actually accomplishes this goal. I think a happy spirit, to begin with, helps. She thought a person simply needed to adopt this way of thinking.

I doubt if either of us has the answer to how to meet this particular goal, but I do know that she and I, and Dennis and her husband, are all working on it daily. I suppose that, ultimately, is what is important - know your goal and work.

Until later,
Ann and Dennis