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
A journal of living with Multiple System Atrophy. How we, a 58 year old woman and a 62 year old man, laugh, cry and love our way through Dennis' latest symptoms and newest diagnosis of MSA.
Saturday, May 22, 2010
Friday, May 21, 2010
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
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
Friday, May 14, 2010
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
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
Wednesday, May 12, 2010
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
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
Tuesday, May 11, 2010
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
Until later,
Ann and Dennis
Sunday, May 9, 2010
Saturday, May 8, 2010
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
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
Wednesday, May 5, 2010
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 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
Monday, May 3, 2010
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
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
Saturday, May 1, 2010
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
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
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