A Practice Vacation

Today Dennis and I are filling another wish on Dennis' Bucket List. We are staying at the Nicollet Island Inn for the night. This is a historic building in Minneapolis, known for it's romantic get-aways. While we have eaten at the restaurant a few times, we have never checked in for the night.

It is also a test run for how to feed Dennis while on longer vacations.

With his new "J" tube, he must use a pump for his night feedings. We are really hoping that we can leave that at home when we travel. So tonight we will jerry-rig a pole to hang a bag from, and use the drip bags for feeding. The fear is we will not be able to set it at a slow enough pace for his intestines to take in the food and begin the digestion process before the emptying into the stomach. However, if it works, it will save us 20 pounds on luggage when we travel by plane.

We do have a letter from Delta (not our preferred airline, but the one we are stuck with in Minneapolis) saying we can check a bag for medical equipment at no charge. But this isn't really the problem - the issue is me loading and unloading a bag filled with heavy, but necessary equipment.

Here is an idea of what we take along:

1. Two diapers for each day. Not much weight, but lots of bulk.
2. Bed pads - same thing.
3. Pills (he is up to 25 assorted pills a day) and plastic tubes to inject the pills into his "G" tube.
4. A coffee grinder to pulverize the pills so they don't clog the tube
5. His computer for communication - while small in size, it weighs about 20 pounds.
6. His helmet and pads for walking. Lots of bulk, and the weight adds up.
7. His nebulizer - another 10 pounds. Perhaps we can get a script for individual neb treatments, but then we trade in bulk for weight.
8. Cans of food - he is taking in 3 cans of food each day and each can weighs about 2 pounds. This adds up on any vacation over 3 days.

So tonight is a practice night for saving 20 more pounds by not bring the feeding pump. Lordy, I hope it works.

Until later,
Ann and Dennis

Rabbit and Turtle

The newest edition to the house - the electric wheel chair - seems to be working out, for the most part. Dennis has a bit more freedom, a bit more ability to move from one spot to another without assistance from anyone else.

However,

The other day, he almost killed both of us by moving our solid wood dining table across the room. He had the speed set on rabbit instead of turtle, and couldn't move his hand off of the joy stick. I had my back to the whole thing, and heard the table moving behind me. I turned and yelled, "STOP, DENNIS." I have a very loud yell, and it was able to shock him into stopping. I am sure the neighbors were wondering, but who cares anymore.

New rule of the house: NO RABBIT!!

Of course, as I sit here and write this, he just slammed into me one more time, moving my chair a few feet across the room. He was on rabbit again.

How do you slow a boy down when he wants to get away?

Until later,
Ann and Dennis

A Mantra for Ann

I need a mantra.

For too long I have depended on the Serenity Prayer to get me through tough situations. Oh, it works, and it has served me well since I was a child and first saw this prayer on my grandmother's wall. But I need more. I no longer want to accept what I can not change. Nor do I always want to try and figure out what I can change and what I cannot.

So I am searching. I found a (dead) dude named Og Mandino, and American author who not only wrote books, but is somewhat revered for his famous quotations. I shall try on a new one each day and see how it fits. Or, perhaps better yet, I will find a few that I can say together that will work for me. Anyway, the one I choose for today is:

"No longer shall my vocabulary include such words as cannot, unable, impossible or quit."

I can, am able and it is possible for me to care for Dennis in a loving and nurturing manner. I will not quit, even when I want to run and hide from reality. I shall move forward with grace and love.

Until tomorrow,
Ann and Dennis

New "Stuff"

After 2 months, the electric wheel chair has arrived. There have been a few stubbed toes and the machine cornered me in the doorway once, but there have been no broken windows or dented furniture so far. The house is quite filled up with movers and shakers - a manual chair, a walker and now an electrical chair.

A tall toilet also was ordered and installed after 3 months of waiting. Unfortunately, I found out this morning, after emptying Urina (night bag) that it wasn't sealed properly. It's so much fun to wake up in the morning and find yourself standing in a pool of urine. Wakes a girl up.

The feeding tube is working well, and Dennis has only thrown up two days out of ten. Yesterday he threw up quite often, but by the end of the day the acid reflux had ended. Last night, however, Dennis managed to unhook the feeder, and there is another mess for Ann to clean up today. It's probably too late to do much of a clean up - the food is very thick and sticky and dries quickly. Doesn't matter too much, the whole carpet needs replacing anyway.

A medical bed is supposedly coming in a week or two, and I have no idea what to do with it. Our bedroom barely fits our bed, and Dennis' office is filled with the remains of what Dennis is hoarding and hanging on to for dear life. We will need to deal with this issue this weekend.

It's a stormy weekend, and a good weekend to stay home and pout. Looks like I have just about enough stuff to fuss about to pass the rainy day away.

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

Caregivers - Multiple Systems Atrophy, part 1

Out Patient Surgery

From the immediate looks of it, Dennis' calorie issue may have been solved.

He had a new feeding tube inserted today. Yesterday he had an appointment with a GI specialist. This doctor decided that Dennis had the wrong type of feeding tube. Instead of one that feed directly into the stomach, he needed one that fed into the intestine. He was brought up to out-patient surgery and they inserted Novocaine into his belly. Then they asked when he ate last.

When I came home he told me they had been mean to him. They made him get shots into his delicate skin and then decided his stomach was too full to do the surgery.

So today he went back on a very empty stomach. When we left a couple of hours later, he had the newest tube on the market hanging out of his belly.

The gadget feels almost like silicone. It's tough, but soft. It has three separate places to insert junk. The "J" tube goes into the intestine. This is where food, and only food, gets injected. Then there is a "G" tube, where water, pills, and any other odd stuff get shoved directly into the stomach. Finally there is a balloon, which we were told not to touch under any circumstances. It's all a bit overwhelming, but we all will get it straight in a few days, and it will seem as if we have been doing this forever.

Dennis will now eat at night while he sleeps. This will leave him with several extra hours in the morning that he has used up slowly eating as much as he could for as long as he could. He will need to get a new hobby. Well, actually he has - he spent a small fortune the other day on a Nintendo DS. Now he can sit at the kitchen table for hours playing memory games and killing monsters.

Until later,
Ann and Dennis

There is a Season

"To everything, turn, turn, turn..."


I could credit this to the Bible, but I learned this message best from the Byrds. If you don't know what I mean, I couldn't possibly explain myself. Suffice it to say, it was a beautiful song that has stayed with me since I was a teen.

Today, while I was actually enjoying myself at work doing lunch duty, I received a telephone call. I was thinking it might be a parent whose kid was in a bit of trouble, but it was a call from Jones Harrison's executive officer. He called to tell me the Minnesota Office of Elderly Something-or-Other had released the information regarding my Mother's death. He wanted to warn me that a TV station and the local newspaper were going to write articles regarding my Mother's death.

In two days it will be the first anniversary of my Father's death - and the fallout of moving my Mother, selling the house, and her death to all follow in the next six months. I was not ready for this smack in the face.

I immediately went to my boss who stopped everything she was doing to find me the telephone numbers I needed, hook me up with the right people that new how to move and shake, and give me the hug and the afternoon off that I needed. I wanted to stay at work, but she was right - I needed to make some calls and lower my blood pressure.

From work, I first called the TV station that was going to run a story. I got a tad bit of run around, but for the most part they were sympathetic. I asked that they not run the story, and I even pulled the "poor family still in so much mourning" card, but they were not very sympathetic. The story ran, without Mother's name, and without much fanfare. I did not watch it, but Dennis did. He said they mentioned that I had said that she was happy while she lived there.

When I arrived home, the telephone was ringing and it was the Star Tribune, the Minneapolis paper. By this time I was calmer, and asked them to include that we held no animosity towards the facility. The ending article also included that I stated that the staff at the facility was as distraught as the family over the loss.

Today is a new day, and hopefully the beginning of  a new season of letting go and mourning without drama.

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