Health Care

Unless I find myself near a computer and needing a writing fix, this will be my final entry until late July. Ireland, here we come!

Before we go, however, please indulge me with one last whine. After all, you will be whine free for 20 days.

I am completely disillusioned with our governments carelessness with health care. Rather than write a dissertation on my disappointments, let me just list a few of the frustrations that I have dealt with over the past few years.

• Once declared disabled, a person must wait for 6 months to receive benefits. Remember, our government is the one who determines if a person is disabled. If they are not able to work, then they are not receiving health insurance. If the are not working, they cannot afford health insurance.
• I had a drug induced stent put in after my heart attack, which means I must have certain drugs to keep it from closing up and letting plaque build up again. These drugs, naturally, are not ones the insurance companies care to pay for. My co-pay, monthly, on these drugs is $400. The government allowing drug companies to advertise has to be at least part of the problem of the high cost of drugs.
• COBRA, the law that says companies with 20 or more employees must allow employees 18 months of coverage, after a person voluntarily or involuntarily leave a position, is a great idea. The employee must pay the full cost of this benefit. This is, on paper,terrific, but for a disabled person, the wait for medicare is 24 months. So now Dennis must enroll in a high risk health insurance company for 6 months.
• The government outsources many of the positions of information gathering to companies that do not have the information. Today, for example, I talked to a gentleman with a decidedly foreign accent, from medicare. He actually read to me the very article I was looking at, online, when I called him. Like I have hours and hours to have someone tell me something I already know. Please, someone, just pick up the phone and answer the question.
• It is more cost effective, for individuals, to go to an emergency room and be admitted to the hospital than it is to see a doctor. Every time Dennis has gone to the hospital, every bill has been paid in full, no questions asked. But when we have asked for an out-patient procedure, we have to ask, appeal, re-appeal and then pay the co-payment. Where is preventative care in our current plan?
• It seems that the sicker you are, the older you are, the poorer you are, the more difficult it is to get good care and be treated with respect. How is this situation okay?
• Dennis cannot be home alone. I cannot afford to retire. We pay, out of our own pocket to have someone come to the house and take care of Dennis. Insurance does not help with this. The government does not help with this. No one helps with this.
  

Oh, lucky you, I am tired of whining. Obama, get your butt in gear and begin to fix this. Be careful not to be influenced by the money machines. Listen to your constituency. You could become the most popular, if not the most powerful, president ever.

Until late July,
Ann and Dennis

What Say You?

Okay, this one is not about MSA. It's not about a movement disorder or anything related to any type of illness. It's about reading the fine print, and thinking beyond yourself whenever you sign anything. It's two completely unrelated stories, actually.

Story One
Dennis Messes Up

We were both so happy the day that Dennis received notice that he was eligible for Social Security Disability. We had worked many hours on his application and had heard so many horror stories about applications being rejected. We did little other than having our own personal celebration and looked forward to having some much needed income. We were told that he could COBRA his insurance for the next 18 months. Since he had been declared eligible as of July 2007, and it was now January 2009, we knew we were set.

Unfortunately, we did not read further. His insurance would be covered until July 2009 only. It seems the 6 months that we needed to wait to receive disability benefits, also were included in the insurance bit. There is no recourse. We had no legs to stand on since we did not declare the need for extended time, within 60 days within receiving notice that he was eligible for SSD.

Now we need to pay triple the cost for insurance for the next 6 months. Guaranteed High Risk State Insurance, they say. We are (pardon me, my tender eared friends) FUCKED. We have little income from Dennis, and now all of it will be put out to pay for his insurance. We shoulda read the fine print.

Story Two
Don't Die Without Telling EVERYONE

I understand that for some purposes it is important to have a death certificate when transferring ownership. Finances, for example. I am happy that my father's financial advisor demanded a death certificate before changing full ownership over to my mother. However, why in the world would the cable company need a copy of the death certificate before allowing changes in the contract? First, my sister had to hand deliver a death certificate to them before they would change Mother's system to basic cable. (She was having so much difficulty with all of the buttons). Then, today, I called to ask about how to do a favorites selection or parental control. She is still having difficulty with too many choices.

"I am sorry, who are you?"
"Ann Osterhus, daughter of Robert and Avyril."
"You are not on the account, only Robert."
"He died last month and we have turned in the death certificate."
"It's not on file, I must talk to him."
(lowering my voice) "I am dead, please talk to my daughter."
"That did not fool me. Dead people don't talk. What is your pin number?"
"I don't know. Dead people do not have a good memory."
"Don't sass me, boy!"
"Sorry, Ma'am. I am trying my best to be calm. God is rather mad at me for not fixing this before I died."
"So you knew you were going to die, and did not contact the cable company."

Somewhere in these two stories is an absurd connection. Both stories are true, by the way.

Until later,
Ann and Dennis

A Sunday Dinner

Dennis challenged me today, to surpass the meals I have made on the past few Sundays. Last week, it was steaks, glazed asparagus and baked potatoes, and Hamed and Ashely for a 2:00 dinner. The week before, he reminded me, I made linguine with short necked clams and a small salad.
I don't really have any idea of the week before that, however.

Sundays really are the easiest day to cook a good meal for the the two of us. We are able to eat early in the day. I am able to devote time to thinking about the meal and making the meal. And I tend to rise to a challenge thrown in front of me, as long as it is given in a positive spirit.

Today, we had lamb kabobs, asparagus and potatoes grilled on our new Weber Q gas grill. It's hard to mess up lamb, asparagus is only good in the spring, and Dennis always loves a potato. I new, even though I may not have topped the last Sunday dinner, I would at least have made a match.

The verdict is in - Dennis cleaned his plate and is grinning. If I keep on making a great Sunday dinner, maybe he will lay off the dessert thing.

Ya, right.

A Good Day Again

Remember, when I write here, I am not necessarily complaining or celebrating. My intent here is to explain the facts, as I see them, in life, as I experience it. You may agree, disagree, find me boring or find me informative. You may also find me any other way that you desire. I do understand that this makes me self-centered, but this is one of the few places that I am allowed to be such a person.

I feel lucky to have found a fully selfish outlet in life.

Today was a good day. We paid Raquel for a full day just to tag along with the two of us. She pushed him and took his wheel chair in and out of the car. When I felt like it, I pushed him for a while, but mostly I just enjoyed Dennis' company. I wish we were rich, and I could have all the time in the world to enjoy Dennis. But we can't. Unfortunately, we really can not afford this simple luxury.

So, since I am unable to hire someone full time to take care of all of the demands of Dennis, you will be my outlet, dear readers. I can only say, "Thank You," and keep on writing. And I do thank you, and hope that you, some how, some way, will find a bit of grace in my writings.

Until later,
Ann and Dennis

Being a Bother

"You act as if I am a bother!" Dennis griped at me this morning.

Well, Dennis, sometimes you are. That doesn't take away the fact that I love you. But when you wake me at 3 in the morning and ask me to turn you, you are a bother. When you wake me again at 6 am (and yes, I had just fallen back to sleep around 5) and ask for Boost, you are a bother. When I have just, that very minute, sat down with a cup of coffee and kitty on my lap, and you call out, "Aaaaaaaaaaaaaannnnnnnnnn", you are a bother.

Jane, my sister, says this is just men in general. Mother says, "He is such a good guy, and I admire you." Friends say, "I don't know how you do it." Dennis' family says, "Thank you. You must really love him."

Dennis and I talked. I told him that sometimes he was a bother. I also reminded him that he was married to a woman who had serious mental health issues, and hadn't she been a bother? I have never been a mother, but I can only assume that at times, children are a bother.

I suppose I could work harder at not rolling my eyes, after all I hate the old eye roll myself. I could "sigh" less, I suppose. And I could stop telling him that he is driving me crazy. I am so good at verbalizing everything, that I forget that Dennis is sensitive.

We will work this out. So far we have been able to work everything out. It helps that we are both highly motivated to stay together. "What's love got to do with it?" Everything, my friends. Everything.

Until later,
Ann and Dennis

A Poem by Dennis

This is a poem that Dennis wrote years ago. He told me it is how he feels about this whole business with his MSA.

The Darker Universe

This incessant dying
This living Death
That say you; God
In your passionate handiwork,
In Roses and in Stones
In the Infinite stars
In the flesh that burns out
Like a Bonfire lit by Mirrors
A Dream
A color in your eye
And you Yourself
Perhaps have died for Eternities
Without us Knowing
We are Dregs, Shards and Ashes of you
You that still are Present
Like a Star Faded by it's Light
An Empty Light without a Star
That Reaches us
Hiding
This infinite Catastrophe

Money and Care

I have been trying to find my mother a decent place to live in an assisted living complex. It seems like it should be easy, but I am finding out that it is not. Every single place is completely different in what they offer. Some rooms have only a bed and a sitting area, others have full bathrooms and full kitchens, and yet others, have no private bathroom at all.

I remember last year when Dennis was in after care at a nursing facility, and how much he hated the place and the experience. It made him feel old and useless. I actually think he deteriorated more by staying in the facility than he would have had he been at home.

It also comes down to money. Private pay gets you a better place, but there is only so much money in this world. I can find better places in Minneapolis, but they are even more expensive.

It seems very unfair to me, given my mom's and Dennis' conditions, that money should be a factor in the type of care that they get. Shouldn't the sick and old get the best care, no matter what the financial status of the person? Something in our system is very broken.

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

The MSA Diagnosis is Official

Yesterday was our last scheduled visit to The Mayo Clinic. Dennis was filled with hopefulness, I had rather lower expectations. We spent two hours with Dr Ahlskog, a movement disorder specialist with plaques, awards, certificates, and diplomas lining his wall. He was not only a well respected man by his colleagues, but we liked him, too.

And we finally got what we had been asking for all along. A final diagnosis. Dennis actually does have Multiple System Atrophy. For those of you that seldom read, or have just begun reading, I will offer up my understanding of all of the movement disorders in following blog entries. But, for today, I need to talk about Dennis.

Dennis was hoping for some sort of miracle. A different diagnosis, one that offered him a longer life. One that said there was a cure and a possibility. I understand. I, too, hope for that, but no longer do I expect to hear such news.

On the drive back to Minneapolis, Dennis started his grieving process once again. This time, he skipped denial and went right to anger. "I might as well start smoking cigarettes again." "My goose is cooked." "It's not fair."

Yes, my love it is not fair. I don't know what to say about the cooked goose thing - I never did understand what that meant. But, please, don't do something dumb like smoke cigarettes. I won't ever kiss you again, if you do.

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

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

Overwhelmed, For the Moment

I have worked very hard to avoid the feeling that I am overwhelmed, but this weekend it hit me between my eyes like a ton of bricks. I am only able to deal with so much, and, it seems, I have reached my limit.

I cannot deal with the long emails from Personal Care Attendants (who are calling themselves, personal care providers, in Wisconsin). I now understand Minneapolis' ex-crazy superintendent who asked that everything be sent to her in bullets. PLEASE send me bullets. You may want to become a writer of the next great American novel, but please, do not do this at my (or Jane's) expense.

I am so done with Dennis' PCAs not turning up on time, or simply not turning up. Actually, the same goes for Mother's attendants.

There are drugs coming to mom, that the insurance company let me know about, but they did not tell me whose drugs were being mailed.

There is always dinner....shit, I am writing this before making dinner. Be back in a jiff, folks.

Okay, slow down, Ann. Dinner will be asparagus, already purchased and ready to steam, and sea fish, of some kind, ready for lemon induced oil and a bit of garlic. Things are not so bad.

I am surprised that life has caught up with me. But it has. And there it is. I am exhausted, and do not have a whole lot to spare.