A Little Nap

The new bed and mattress arrived yesterday. The delivery men assembled the bed in only a few minutes and picked up every trace of a recent delivery. I looked forward to a great night sleep last night.

Naturally, a sound sleep was not about to happen.

I slept soundly for a few hours when Dennis began to sink into his pillow. (Yes, he still sleeps with me and will not go into the medical bed). From then on it was "Aaaaa" Aaaaa" for the rest of the night.

Today Raquel and Dennis were off to the urologist for a catheter change and a trip to the Courage Center for a workout. I knew that I had enough time to watch my afternoon show, The Closer, and then I would go to bed for a nap. But the phone rang and it was an important call, so the nap got set back about 40 minutes.

I had just laid down in bed when Dennis and Raquel returned. Thursdays she leaves early, so she set him up and took off. For about 20 minutes, Dennis was quiet. Then the "Aaaaa" routine started once more. I yelled out that I was sleeping, but he kept right on with the calling. So I got up to see what was up. It was meds time.

After I gave him the meds he asked if he could come to bed with me. What could I say? Saying no was not a good choice, that would cause an argument and wake me up completely. Instead I said yes, but only if he promised to be quiet.

First he grunted. Then he asked for covers. Then he asked to be turned. Then he wanted his drool rag. Then he grunted and groaned loudly. Finally I asked him if he called this quiet and when he answered yes, I knew I had to give up on a nap.

I came to the living room and decided I might as well write a blog entry. In the background Dennis is giving me not so subtle reminders that he is still in bed and wide awake.

Grunt. Groan. Sigh. Sigh. Grunt. Groan. Grunt.

At least I got something done on this not so quiet day. I should also be tired enough to sleep through almost anything tonight.

One More Large Delivery

Today the new bed is arriving.

This is the bed that is replacing the bed that Raquel and I broke while it was in transit from one bedroom to the other. I am really looking forward to getting up off the floor and back into a bed that sits at a reasonable height.

In the meantime, the lift arrived and is sitting at the foot of the medical bed. Actually it's more of a looming over the bed - it's huge, awkward and ugly. It is not something that Martha Stewart would approve of in a bedroom design. Perhaps I should knit a cover for it?

I believe that we must have everything that a disabled person would want by now. We have all the smaller durable equipment - oxy-meter, blood pressure machine, a saliva suction machine, feeding pump, Dynavox - as well as the larger items - walker, manual and electric chair, lift chair, bed, lift, bed table - and all the repurposed items - helmet, gait belts, hockey pants and baby monitors.

I hope that after today we will not need any more deliveries to this address for quite a while. At least not for huge items that require us to get rid of something old to make room for the new.

Until later,
Ann and Dennis

Being Ann

My parents both had complicated names. My mother's was Avyril Maxine Peterson, and my father's was Robert Steinsland Osterhus. Actually, my mother got the worst of the deals after she and dad got married. This is probably unnecessary to say, but that is how the three of us kids ended up with one syllable first names; Paul, Ann, Jane.

Like most names, people have taken advantage of even 'Ann' as a way to tease, delight or be a bit rude. I don't suppose any name is immune to being twisted and turned into something different.

But the only thing that ever bothered me was when someone was saying "and" and I would hear "Ann." Mostly this happened at school. The teacher would be lecturing and saying something dull and useless, and then he would say "and.........?". Hearing "Ann.....?", I would answer, "Yes?", and everyone would stare at me. Oops, caught day-dreaming again.

Sometimes my siblings would also take advantage of 'Ann' and 'and'. There was always a bit of delight when a Christmas gift tag said "Paul And Jane". Ha. Ha. Ha.

Now I am facing another way the name Ann is giving me something else to dismay me.

Dennis' grunts are becoming more and more easily mixed up with my name.

As Dennis' speech deteriorates, many words are becoming simply vowels. For a long while my name was "Annnnnnnnnnnnn...Annnnnnnnnnnnn...Annnnnnnnnn", but now it is simply "aaaaa..aaaaaaaaa..aaaaaaaaaa." This is not easily distinguished from "Ehhhhh...ehhhh...ehhh" or "Uuuuuuu...uuuu...uuuuu".

So I find myself getting up and checking on him even more often that he actually does call me. Last night I was up twice only to figure out that he was just grunting in his sleep. This afternoon, I checked on a grunt more often than I checked on his "Ann".

And that's what life is like being Ann.

Until later,
Ann and Dennis

G/J Tube Problems, Again

Once again, the "J" portion of Dennis' tube is clogged. It is just too narrow for the thick, sticky food that we are suppose to use. This time, when I tried to unclog the tube, a balloon formed. It was fun to watch, but not as much fun to try and fix.

So, today we are back at the hospital once again. The staff will assess the problem and either put a new one, the same style, back in or give him a separate tube for the gastric another for the jujunal. I imagine that Dennis is hoping for the first because it is an easier change. I am hoping for the second, but this will mean one more hole in Dennis' abdomen. It will also be a bigger surgery, and more recovery time.

I guess all we can do is wait and see. Perhaps the nutritionist will be able to figure out another alternative.

Until later,
Ann and Dennis

Time on My Hands

Dennis has another bladder infection. After two days of bed, antibiotics and lots of attention, he is finally feeling better. I worry whenever he gets sick.

But I had plenty of time on my hand and accomplished two big tasks.

I booked a late August cruise for the interior of Alaska. Dennis and I were in Alaska a few years back, and were in awe of the glaciers. The sounds they make when they melt and crash into the ocean is indescribable. We also enjoyed the laid back atmosphere. Now we are looking forward to seeing other parts we have not yet seen. Even better, Raquel will be joining us to help out with Dennis.

I also finished a painting. Raquel really seemed to like it, so I am giving it to her for her birthday. It was fun to give away something that I created and the recipient likes.

It's angels in the night. And while Raquel is not here during the nights, she is an angel in our eyes.

Until later,
Ann and Dennis

A Vacation Story

One of the more interesting days in Boston happened on the day that the four of us (Jane, Ralph, Dennis and I) decided to take a cruise down the river Charles. It's a great, informative, hour long trip that hits many of the highlights of what makes Boston so special.

We had decided, fairly early on in the day, to go to the to the top of the Pru (Prudential Building in Copley Square) to take in the view from the top. We were educated along the way about the stories of Boston from the beginnings until today. Most interesting fact learned? Much of Boston is built on Land Fill. That left me feeling a bit queasy about standing on the 50th floor of a building.

After the Pru, we began to make our way to the dock for our boat. We couldn't find a taxi that would take the four of us, plus a wheel chair, so Jane and Ralph took off in the first taxi that came along. Dennis and I were told to head to the Fairmont hotel, where taxis cued up on a regular basis. This was a short couple of blocks away, and even though we were a bit late, we charged over there with lots of hope of tagging a taxi. The first taxi in line was driven by one of the worst of the Boston lot of drivers.

As I asked him if he wanted a fare, the driver looked at Dennis with disdain. I should have turned to another driver, but I have been taught the rules of queuing taxis and knew that we were to take the first in line. He finally allowed me to work Dennis into the back seat, unpack the gear that we carry on the back of the chair, load the chair and the gear into the trunk, when he decided he would not take us. The chair wasn't a perfect fit.

I can swear like a sailor given the opportunity, and I am very defensive when it comes to Dennis. I told him he would take us, but I lost the battle. All of a sudden he did not know any English. So I asked him to help me and take the chair out of the trunk. He refused. I swore more at him, asked for his name and licence number, and swore a bit more. Then I moved to get Dennis out of the back seat and he started to fall. I yelled again for help, and finally the other driver came over and helped me get Dennis back into his chair.

In the meantime, Jane had been calling me on her cell telling me her driver was hopelessly lost. I had shown the driver the exact location on my Blackberry before they pulled out. When he got lost, Jane had used her IPhone to show him again. But he was still lost. It looked as though none of us would make it to the boat on time.

With the help of the Fairmont staff, we were able to snag a cab and finally met up with Jane and Ralph a few minutes after the boat pulled out. They were gracious and let us change our reservations to the next ride, which gave us an hour to settle down, chill out and enjoy the River Charles. This is a picture of my sister (on the left) and me overlooking the River Charles. Please note that I am smiling and no longer cussing like a madwoman being undone by a taxi driver.

Until later,
Ann and Dennis

Thick-It Tips

When ever we go anywhere, we always take thickener along so Dennis is able to drink. Dennis loves, loves his Coke and will also order a beer with dinner. Usually I ask the wait staff to fill the glass only 3/4 full, but that ends up in a confused look and always an explanation. So, if it is a beer, I will usually just drink the top off the beer. For Coke, I always go through the explanation; I dislike Coke as much as Dennis' loves it.

While we were on the cape, I trained Ralph to drink the first third of the beer. By the time we met up with Hamed and Ashley, Ralph was completely in the habit of helping out and did it automatically. While Ralph was drinking, and I was adding thickener, Jane was explaining to Hamed about why Ralph was drinking it and my assertion that every beverage reacted differently to the thickener.

Hamed then proposed a research study - Dennis and I could travel around the world testing different beers and how they responded to the thickener. While every beverage acts different to the thickener, every beer (in my humble experience) also reacts differently. So why not research the project, and save other thickener folks the messy problem of cleaning up a goopy, slippery and sloppy mess?

Sounded good until we figured the market for this research was probably low, and I really don't want to work for the government again, in any capacity - way too much paperwork. But, I could share my experiences with you.

Then I figured I could pass on other coping tools that we have discovered, used, and what value we found in any of these tools.

So, Number One Tip - Using thickener in beverages

• No ice. None. Nada. Not one bit. As it melts, the thickener
• Orange juice needs very little thickener - it keeps getting thicker and thicker
• Use a whisk to mix - it goes much faster and the consistency is more even
• With fizzy beverages, start with a glass half full and add thickener. Then add more pop with the head goes back down. Add more thickener if necessary and never fill the glass full until you are done adding the thickener.
• Use half flat fizzy drinks if possible to start the process. Finish off the drink with a freshly opened drink.
• Wines thicken nicely and there is no overflow problem.
• Treat beer as you would pop - but remember, all beers are different. Go slow when adding mix.
• If your doctor tells you to use thickener, do it. It may just save your life. 
• There are many on-line dealers for Thick-It and if you purchase in bulk, it's not all that expensive.
• Carry a small container of thickener where ever you go.

Do you have any suggestions? Do you have questions that we may have an idea about? Please feel free to email me or drop a comment. I am ready and willing to share or ask around.

Until later,
Ann and Dennis

The Lift

The last time a social worker came to assess Dennis, she decided we needed a lift to help move Dennis from one place to another. Yesterday a representative came out to show us how it works, before he started the insurance paper work process.

"I hate it, I hate it, I hate it," Dennis yelled throughout his visit.

The man understood. He told me he generally gets that reaction from customers.

I ordered it, anyway, much to Dennis' chagrin. "It's for me, not for you," I told Dennis. I explained it was for my back, the PCA's backs and to help prevent any further bruising of my body.

"It's out of the dark ages! It's barbaric. I hate it, I hate it, I hate it."

I do too. It's huge, it's a lot of work, it's ugly and it takes up too much room. However, I know even if we do not need it right now, we will need it soon. And since the wheels of government dollars runs so slowly, we should take it when it is offered, or we may not have it when we really do need it everyday.

If the days do not come when we need the lift, it will most likely mean Dennis isn't around anymore. I know enough about this disease to be assured that this will be the case. I don't mean to be maudlin or even discouraging, but it is a fact that Dennis isn't going to become easier to move and position as his disease progresses.

So, in a way, we are stepping back to the dark ages. We are dependent on what is available, and the lift is not the most innovative pieces of equipment I have seen. It's not computerized, it's not even operated by batteries. Some days we simply need to be grateful for what is at hand, even if it isn't up to our normal standards.

Until late,
Ann and Dennis


(View the video above if you want to see what this looks like and how it works.)

The Past Week

Oh, my dears, what a whirl-wind week I have just been through. Our anniversary weekend, the last days of work, Jane and Ralph in from London for a few weeks, my retirement party and the beginning of the next chapter of our lives.

During the practice vacation we found out that we will need to bring along the pump for Dennis' night feedings. We tried hanging it from a light, which was fine, but not high enough to force the liquid down. And the "j" tube is 1/2 the size of the "g" tube, making it all the more difficult for gravity to do it's work. The liquid food is fairly thick and it was not moving any where. I am glad that we tried it before we headed out for more than one night.

Work was not fun at all. The boss was gone for most of the week, which made me the boss. Long, long ago, when I was a young, thin and energetic teacher, I had been encouraged by many to go into administration. But, I have the temperament of my father (impatient, demanding, always right, and stubborn) and my mother (sensitive, especially when stressed, and personalizing other peoples negative ways) and I knew I would not be suited for the work. But here I was, on my last few days of work, being in charge. Which mostly means, putting up with all of the parents and grandparents of the stinkers at school. And let me tell you, those stinkers do not come out of the wombs of sane women or the sperm of pleasant and intelligent men. By Thursday I was done, and took the last two days off from work as sick days.

The retirement party was a blast. I have had several jobs, at several locations over my 22 years in education. I did not invite anyone in particular, but put it out in the district hotline that a party was to happen. A diverse group of friends showed up, and I laughed a months worth of laughs in 6 hours. There were stories shared about me that I remembered, some that I sure were made up and some that were vaguely familiar, but I am sure they were only partially true. Dennis came with me, and tried to stay until he got food stuck in his mouth and wanted to make a get away. Raquel was his, and my, designated driver, and while he left a bit earlier than I did, he had fun.

I haven't hung out much with Jane and Ralph yet, but they came to the party, too. The four of us are going to Boston in a week together. We will stay in Boston for a few days and then head to Cape Cod. There we will meet up with Donna and Louie, Dennis' sister and brother in law, for the weekend. After the weekend, Hamed and Ashley will join us for a couple of days before we head home. I guess this vacation will be the beginning of the next chapter.

So stay tuned and carry on.

Until later,
Ann and Dennis

The Coat

Dennis and I celebrated our 9th anniversary recently. For the past nine years we have been downsizing almost daily. We moved two households into one smaller house and have tossed, given away, sold and bartered belongings through three moves into new homes. It's been easier for me - I have always been a thrower. But Dennis is a collector, and he does not like to give up his things. One of his favorite items to acquire is coats. However our new condo has limited storage space, and we have had to come up with a household rule - one new purchase means two items of the same type must be given away.

On Saturdays, our part time PCA, Susannah comes and gets Dennis ready for the day. She has a two year old daughter and a boyfriend, David, in her life. Both she and David are immigrants from Northern Africa, and are living on the financial edge. One Saturday, when we were giving Susannah a ride home, Dennis gave David two of his coats. One was a rain type jacket and the other a very warm shearling coat.

Last Saturday it was warm - 80 degrees and not a cloud in the sky. We gave Susannah a ride home, and when we were a few blocks away, Susannah called David, who was babysitting, and told he told her that he wanted to see Dennis. Dennis had been sick most of the week, and David was concerned and wanted to see him. As we drove up, David came out of the apartment building wearing the shearling coat and grinning from ear to ear. Susannah told us that he loves that coat.

We teased him a bit about wearing a winter coat in such warm weather, and he simply said that he wears it all of the time. He thanked us profusely for the coat, once again, and for bringing Susannah home. He hugged Dennis through the window asking how he was feeling and blessing us over and over.

It's not everyday that a simple action can bring so many warm feelings. It is easy for us, who have so much, to give away our stuff. Seeing someone so happy with what we have discarded makes the giver feel as great as the receiving. I am grateful for such small pleasures.

Until later,
Ann and Dennis

Better Attitudes

Okay, I am better. Dennis is better, too. The sun is shining and the birds are singing. It's time to get back to seeing the lighter side of life.

I have had a few worried emails, phone calls and messages on Face Book, lately. All I can say is you should see some of the drafts that I did not finish.

We really are better today. Last night we both slept most of the night, and the alarm for the feeding didn't go off until 5:30 this morning. I can live with that.

Dennis is going to the Courage Center with Raquel today, and then I will take the car and get out of the house myself. Life has made it's inevitable turn and we have both decided to live on. And that is good.

Until later,
Ann and Dennis

Stressed Out

I have been bookmarking last minute disabled vacations. I figure, if we have a couple of weeks, we will have several choices to pick from, for last minute travel.

But then right smack dab in the middle of planning for the future, the present happens.

I have been crying, Dennis has been worried. Dennis has to poop, the PCA isn't showing up for work. I do not feel well (haven't for a long time) because I am exhausted and really, really need some time off. I have a month until work is finished (and I do know that is nothing), but I am exhausted and ready to stop everything right now.

Dennis is waking up at least 5 times a night, and now the feeding pump buzzes 2 or 3 times a night. I should be able to get that down to one time, but for now, I am lacking sleep, patience and desire to do anything.

So I am taking the week off from work. 30 days until I am done, and I am taking a week off? It's not only best for me, but also best for the kids. Not only am I not at my best, but I am so on edge that I catch myself saying and doing things that are not like Ms. Ann! At home, we are used to Ann being stressed, but at work, not so much.

So for this week it is napping, television shows to dull my senses, and a bit of peace.

Until later,
Ann and Dennis

MSA on You Tube!

I never would have guessed there would be even one You Tube video on MSA, let alone several. The one I posted below sounds so much like the two of us, I wanted to share it.

Until later,
Ann and Dennis

I Love This Man!

Dennis has not been feeling well for a few days now. His strength is low, he feels spacey often and he has been having difficulty consuming enough calories each day.

I have been wallowing in my self pity for a much longer time, and have been drinking when I get bored and frustrated.

We both called each other on the other's behavior.Dennis needs to get more calories and I need to be in control when I am taking care of Dennis.

I heard you Dennis. I have been drinking too much and you get scared. My behavior causes you to feel concerned for your own safety and well-being. Will I be able to take care of you in an emergency?

Then you added an out for me. If I wanted to over-indulge, I may, but I need to find a PCA to be with you and care for you.

I just told you to consume more calories.

Is it any wonder that I love you so much?

Until later,
Ann and Dennis

Dates of the Year

The past few weeks have been difficult. Dennis has been talking more about death and whining about being a freak. Last Friday I spent the day with a girlfriend, and when I returned home he was a bit pouty. He was jealous that he could not party like he could in the good old days.

May probably will not be a whole lot easier. The 7th is the anniversary of my Father's death, Mother's Day is May 9th and my Mother's birthday would have been May 11th. It's a lot to take in and relive.

But, on a happier note, May 17, is Dennis' and my anniversary of our first official date, 9 years ago.I think we will need to go out on a breakfast date to celebrate loving each other for 9 big years.

I know that I have not written much - there seems so little to say that is relevant. Maybe tomorrow I will think of something completely irrelevant to say, and share it.

Until later,
Ann and Dennis

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.....

Practicing Retirement

I received a call at work this morning from Raquel. She was throwing up and Dennis was feeling sick. I had to go home.

Once again, thank you boss for being so very understanding.

Dennis felt he had a fever, so I checked his temperature. All was fine - he is running a bit low, as is usual. He was warm, but he was under the down comforter without the fan running or the windows open.

Now he is digging through a drawer of socks and underwear. He has decided to downsize. He also filled a bag with shirts before Raquel left this morning. Mostly white dress shirts, I imagine. He doesn't wear them anymore for obvious reasons (if you have ever seen him eat, it is obvious).

I imagine I am practicing retirement today. How will I fill my day while Dennis is filling his? I believe I had better come up with a game plan.

Until later,
Ann and Dennis

Urine

Our home smells like urine. Not like pet urine. Not even like an old folks home urine smell. But exactly like pee that has been sitting around for days and days.

Many years ago, I worked at a small school with uneducated janitors in charge. They waxed the floors yearly, but only washed the floors within a few inches of the edges. Pee in the boys room was contained, forever, in the wax.

Now my home smells like this.

Today I had Susannah wash the floor and toilet with bleach. When we returned home it still smelled. In the past I have found small leaks in Dennis' bags, but this time, nothing. Could it be that he is leaking through his bladder, around the area of the incision into his bladder?

Yuck, yuck and double yuck. I hope we can figure this one out.

MSA

I have had a difficult time making my way to the computer lately. When I have made a blog entry, it has been more out of obligation, than desire. It's not that there hasn't been anything to say, it's just that I haven't been able to figure out how to say it.

Ever since I received the phone call from Janet that Patrick, her husband. had died from MSA, I have been unable to put in writing what I has been going on in my brain. I never met Patrick, and only met Janet after his death. But, the lived fairly close to us, went to the same clinic as Dennis and were purchasing the same equipment as we were.

I suppose that makes Dennis' imminent death more real to me.

I am trying to focus on the stories of those like Marsha's; her husband, Johnny, has had MSA for 9 years and is still alive. We also are starting to plan our summer and fall, and that keeps both of us going.

I will find my voice again. Please bear with me while I mourn this latest loss and learn to move forward once again.

Until later,
Ann and Dennis

An MSA Death

Another memorial service today. I will, however, only attend the visitation, as I have never met the man who died. I only know his wife through a couple of phone calls and emails.

But, he had MSA, and died from complications of the disease.

Janet found me through my website and asked around at the Parkinson's clinic if anyone knew me. In January, we both gave Joan and Marjorie permission to share our information, and Janet and I talked a little while later. We chatted about life as a care-giver, the uniqueness of MSA, and where we all were headed in the future.

Then, when Dennis checked out the communication device, we were told that Patrick, Janet's husband, was receiving one too. Patrick and Dennis also were in for fittings for electric wheel chairs about the same time. We seemed destined to meet.

In my mind, although it never came out of my mouth, we would get together as couples after both guys had received the new Dynavox that was being built for each of them. I thought about how nice it might be for both guys to "chat" comfortably, and hopefully share quite a few laughs. Sadly, it is now too late.

Tonight, please, hold Patrick and Janet in your hearts. In fact, let's all hold each other in our hearts.

Until later,
Ann and Dennis