Dennis the Menace

It's 2:38 am on a Thursday morning. Why am I awake?

No, I did not wake up and suddenly need to go to the bathroom. No, although I often do wake myself up snoring, that is not the case either. It, of course, is Dennis.

So what did he do this time?

He has been worried lately, about everything. He is sure that his feeding tube is plugged. He is positive that Raquel and I are plotting against him. He thinks that his catheter isn't draining properly. He isn't eating. He isn't getting out of bed. He isn't having any fun.

And he wants to make sure that I am miserable, too.

We talked when I came home from work, and I thought we had moved ahead, a bit. But then he woke me, at 2ish, to check his catheter. I, very unhappily, crawled out of bed (we keep the temp at 62 degrees, so it is COLD) and put together a set up for unclogging the tube. I inserted water, and then pulled out nice, clean and unclogged urine. No blood, no clots, no nothing but urine. Now he feels better and I am sitting here stewing.

No, he really doesn't want me to be miserable. too. But he is very high maintenance - not a quality that I admire.

We will get through this period. We always do. In the meantime, I have my computer, a free blog site and you, my dear readers (who said that?) to listen to me.

Until later,
Ann and Dennis

It's Not Been a Good Weekend

This has not been a great Labor Day weekend. First, Dennis had a bed, bad case of the shits all weekend. Most of the weekend he sat on the pot, while I cleaned the bed, the carpet, the floor and his butt. We did manage to squeeze in a trip to the Minnesota Zoo with Mother and JoAnne. That was fun.

Last night he started screeching, hollering and screaming in his sleep. I tried covering his mouth, sitting him up, and giving him a second sleeping pill. No luck. I am sure the neighbors were not very thrilled, either.

I went off to work this morning, and had the usual crap at work. When I came home, I found Dennis lying on the floor, surrounded by a broken glass. I don't see it as often as I did a year or two ago; yet I could assess the situation quickly and calmly and act swiftly. I swept, moved him to his knees, got him in a chair and vacuumed the rest of the mess up. Within an hour, I had made him dinner (mashed potatoes and mechanical soft meat - we are off the feeding tube until the shits are gone) and into bed.

Me , I am worried about Dennis. Dennis is worried about both of us. We are trying to find money to help get him more PCA time, but in these economic times, it is difficult. As long as we have any money at all, we are so low on the priority list.

Dennis is going, once again, to his doctor - one that we both like. He is thinking about a colostomy bag. This is way beyond what I am ready to comprehend right now, but I am proud that Dennis is ready to discuss this next possible step.

Not a Pretty Story

Okay, this begins with a strong warning. This post has a very high gross-out factor.It should only be read by people who are struggling with issues of constipation, feeding tubes, loose stools and those who enjoy a dirty tale.

Yesterday was a double diaper day with an extra throwaway pad everywhere Dennis sat. He also spent a good portion of the day just sitting on the toilet. For those of you that have followed for quite some time, you know that Dennis has constipation problems. These problems are further exacerbated by some of the medications he takes. Recently, we found the right combination of stools softeners, yogurt and senna to gently attack the problems.

We forgot to factor in the feeding tube eating.

It seems, like everything else that Dennis takes, the formula he uses when he feeds causes either constipation or diarrhea. This time around it was the latter.

So, given that we have dealt with this many times, we know how to prevent a complete mess, most of the time. This time was the worst ever and our precautions against messiness were useless.

We began with double diapers. Then his usual pad, and a throw-away on top of that. We had the sheet, a pad, a mattress cover and under that yet another pad. Okay, the bed faired okay to midland, but my Danielito did not.

I woke up to a man with poop up and down his back, his legs, the bed and pillow. First came the horrendous smell, then the sound of swishing and the call of Dennis for help. The poor guy had been sleeping in his own feces all night. He must have been terribly uncomfortable. Thankfully, he doesn't have a great sense of smell, or he most likely would have been gagging and throwing up on top of everything.

Two hours later, he is cleaned up and sitting on the toilet. We were planning on going to the zoo today, but we both think it's best to stay away. We don't want any big, mean critters sniffing at him.

Until later,
Ann and Dennis

Doctors

Yesterday, I took Dennis to see his Parkinson's doctor. I don't particularly like her. She seems to have forgotten to develop people skills as part of her practice. I think she tries, but being a doctor of some prominence seems to be more important that being there for her patients. In reality, I am sure that this is not true, but this is how she comes off, to me.

Most of the doctors, nurses, and other health care professionals that we have met over the past 5 years have had a very positive impact on me. During our hospital and emergency room visits we have met many caring, selfless, interesting and dedicated staff. At the Mayo, we were impressed with how much time was spent listening to and talking with us by research doctors. The Courage Center welcomes the disabled with so much comfort, no one feels out of place. I could, and probably should, go on and on, but I believe that I have made my point.

There definitely people at the Struther's Clinic that we both do like. Joan, the social worker, and Jean, the Physicians Assistant are both easy to talk to and provide the information that we need. There are others, too, that we both like. Happily, we deal with the "others" much more often than his doctor.

I believe that it is fairly apparent that I value social intelligence more than other types of intelligence. Perhaps I should get over this prejudice of mine and accept her for her expertise. I will think about this.

Multiple System Atrophy Stinks

" Ur ee." " Ur ee." " Ur ee, ur ee, ur ee." I am trying to pretend that I do not hear Dennis, once again, wake me at 3 am to turn him over.

" Ur ee, ur ee, ur ee, ur ee!"

I feel bad for him, but I cannot tell you how much I hate being woken up in the middle of the night. I roll over and then I feel guilty because I am able to roll over. So I get out of bed and roll him over from his left side to his right side. This time I am able to go back to sleep with ease.

A while back, I received an email from Angi, whose mother has MSA. She had recently moved her mother into assisted living because she could no longer care for herself. But, her mother was getting into trouble because she called for help so often.

I understand both sides. Dennis does need help with quite a few movements that most of us take for granted. On the other hand, I do tire of hearing, " Aaaaaaaaaannnnn," 30 times a day.

I suppose all diseases are unfair.

I hate what Alzheimer's is doing to my mother. She gets argumentative and frustrated. She feels that people she meets think she is stupid. She can't remember how to change stations on the TV using a remote. This is unfair to a woman who is extremely bright and articulate.

Even so, Dennis's disease seems particularly unfair. In four short years, he has gone from playing tennis weekly to not being able to walk without a walker and a personal aid. Four years ago, we would share nightly stories and now his speech has been reduced to vowels and some hard consonants.

I could go on, but why? I think I will close for now and celebrate all that we still have, together.

Until later,
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

Feeding Tube

Dennis has lost 30 pounds in the past year. The first 15 he was grateful to loose, the next 15, I was grateful he lost. It's easier for him to walk around, and much easier for me to help him get up and get around. However, it cannot keep going down and down.

Several people involved in Dennis' care have thrown around the idea of inserting a feeding tube. This seemed to me to be a last resort. I cannot fathom the idea of never being able to eat again. I don't think a world where Dennis is unable to eat pie is a world in which he wants to live. And how would he exist without ice cream?

But, yesterday, a visit with the speech therapist cleared up this whole feeding tube business. We found out it is really just a button that open and shuts, and nutrition is inserted via a needle, into the stomach. It is used more as a supplement to nutrition rather than a substitution for the whole enchilada. He can still eat, but when he is too tired to get all of his nutrition through edible food, we can stuff his belly full of liquid food.

I am feeling so much better about this whole business now. And, for those of you that expressed concern about my feeling overwhelmed the other day - thanks, and I am feeling much better.

Until later,
Ann and Dennis

Virtual Friends

Ten years ago, or so, I began to keep up with my relationships by email. When I would vacation, I would send home emails about my adventures. I remember first starting this when I went to Guatemala to study Spanish.

Eight years ago, I met Dennis online. Well, actually, we were introduced online and met in person a few days later. When we met, we knew that both of us were honest about who we were online, and that we had so very much in common.

Nowadays, I have several virtual friends and acquaintances.

There is Iva, in Sweden, who reads my blog frequently and comments often. Iva has a heart of gold and always is here to give me as virtual hug.

A woman, whose mother has MSA/SDS, or something Parkisonian, that was so thoughtful to send me an ecard when dad died this month. We have corresponded a bit, and I find some relief in her emails, as she finds some relief in my blog.

Lola, and Poppie, in London, who we have been lucky enough to meet. We both love them to bits. We would never have met them had it not been for this darn thing called Internet.

I keep up with my family and friends via email, or texting, even more often than telephone. I doubt if my nephew has ever handwritten a letter and sent it via postal mail, but that doesn't mean we aren't in touch. There are those (over the age of 100) that would argue, that virtual friendships are not as deep as real friendships. I, being my obstinate, stubborn self would argue, that some of my very deepest relationships are virtual.

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

Such a Sweetie

Dennis visited with Jean, the nurse practitioner who works with Dr. Nance, today. He hasn't told me much about the visit, but he brought home a copy of a letter she wrote to his insurance company on his behalf.

She, like everyone else he encounters, noted his upbeat attitude and contagious smile. I love his goofy laugh and very peculiar sense of humor even more. Most of all, I love that he can still make me laugh.

Dennis has so many wonderful attributes that are getting lost in the mire of this awful disease. At least his humor, his enjoyment of life, has not disappeared. For that, I feel very lucky.

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.

Score, Times Two

Oh, my, it's been a very long time since I posted. I am sure that all of my faithful readers have left me! Perhaps I should Twitter instead of blog. I suppose I could get a sentence out each day. Or, maybe I should just work a bit harder at what I have already started.

Actually, I have always been a gal that gets bored easily. I dabble in this, and then I dabble in that. I tend to think of myself as a connoisseur of many interests, but a master of very few. Maybe I have a touch of attention deficit disorder. I will have to look this up in the DSM IV and self-diagnosis myself. Someday, when I have nothing better to do with life.

In the meantime, we have had a few wins. We received notice from Dennis' insurance company that they will cover an initial visit with the movement disorder specialist from Mayo. Score! We also have finally convinced the insurance company that having an HMO from Wisconsin cover him is not acceptable, since we live in Minnesota. Score, 2!

We are lucky. We have the resources to get what we need. We are educated, resilient and resourceful. No one should have to fight this hard to receive what is rightfully coming to them. Yet, we do.

Obama, fix this! Please!

Until later,
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

Stablilizing

Last summer, everything in our lives was changing so fast that I was sure I would have something new and exciting to write about each and everyday. A blog was born with a promise of a new entry every day for one year.

Well, life does happen, and illnesses do stabilize. I have been sick, and Dennis is stable. I have not needed to write as often, to release my angst, and Dennis' life is a bit easier, in some ways.

The falls for Dennis are, for the most part, an event of the past. He has learned how to walk with aides, people, walkers or chairs, and avoid dangerous situations. It's part acceptance of the reality of his disease and party fear of what the next fall could mean.

His blood pressure has stabilized, also causing fewer falls. This is because he takes fewer medications and he is more aware of when he should and shouldn't move. Sometimes a guy just shouldn't stand up.

The catheter has taken care of the need for daily bedding change. My days have stopped centering around a bed stripping, washing and redoing.

The Courage Center has been wonderful for Dennis. He is able to work out on disability friendly weight machines and his muscles are becoming stronger once again. He enjoys the time there, and feels able once again.

A year can bring about so much change, good and bad. For the most part the last few months have been great. We both needed this - a bit of stability and time for acceptance.

Until later,
Ann and Dennis

Sleeping

There are simply a few things that a person should not talk about when they wake up in the middle of the night and find their partner awake, too.

One is money and the other is death.

Dennis takes a light narcotic sleeping aide, that keeps bad dreams and movements at bay through the night. So when he brings up money worries or decides to tell me how long he believes he has to live, he falls asleep easily after he is finished. Me, I am kept awake for the remainder of the night.

Last night, however, after he announced at 1:30 am that he thinks he has about 2 to 3 years to live, I got up and took one of his pills.

I know, I really do know, that prescribed meds should never be shared. But I also know that going to work without my eight hours is an equally bad idea. So I took one pill and slept until the alarm went off at 5:30.

I suppose I should go back and finish the conversation with Dennis at a time other that the middle of the night. I should also talk to my doctor about a proper sleeping pill for me, for times just like this.

It might also help if I brought a large hammer to bed, and smacked Dennis when he brings up inappropriate night time conversation. But that could lead to jail time, and that has to be worse than taking a prescribed drug, without a prescription.

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.