I am up at 3:00 AM. Dennis is squawking and breathing heavy, but that's probably not why I cannot sleep. Some nights, sleep is just not easy.
A reader left a comment the other day for another reader. It was regarding how do you know when it's time to move a loved one from home to another living situation.
How do you know?
From his short stint in an after care program at a nursing home 2 1/2 years ago, I know that Dennis would quickly die if he were put in a nursing home. We have talked and have decided that when he is ready to let go, I will cut off the feeding at night and have hospice care in the home.
But I know that is not the right choice for everyone.
I was lucky with my mother, too. When my father died last year, she decided she wanted to live near me, but not with me. She and my father had the discussion years ago, and knew they would never want to live with their children. I don't know what that says about us kids, but I choose to believe they were asking what was right for all of us.
It's not easy to know when to make a change, but I do believe that by talking honestly, you come to the best decision for everyone. You may (probably will) make mistakes along the way, but if it is done with love, I am positive it will work out in the long run.
Until later,
Ann and Dennis
Showing posts with label Mulitple System Atrophy. Show all posts
Showing posts with label Mulitple System Atrophy. Show all posts
Friday, October 15, 2010
Sunday, June 6, 2010
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
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
Sunday, May 30, 2010
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:
Until later,
Ann and Dennis
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:
- Two diapers for each day. Not much weight, but lots of bulk.
- Bed pads - same thing.
- Pills (he is up to 25 assorted pills a day) and plastic tubes to inject the pills into his "G" tube.
- A coffee grinder to pulverize the pills so they don't clog the tube
- His computer for communication - while small in size, it weighs about 20 pounds.
- His helmet and pads for walking. Lots of bulk, and the weight adds up.
- His nebulizer - another 10 pounds. Perhaps we can get a script for individual neb treatments, but then we trade in bulk for weight.
- 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.
Until later,
Ann and Dennis
Tuesday, May 25, 2010
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
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
Sunday, May 23, 2010
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
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
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
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
Friday, September 18, 2009
Shit, I am Old
Just how old are you when you find yourself the official closer on your mother and father's 30 year home? Or, maybe better asked, when your partner falls down three times in one week?
There are significant events in your life that make you realize that you have aged. For some people, the 30th, 40th, 50th 0r 60th birthdays are milestones (I don't yet know beyond the 6th decade). For me, the years haven't meant as much as the events that have happened along the way.
In the past few years I have lost my waist line. This has been a huge reminder of my own age. OLD. Mary, of Peter, Paul and Mary, died two days ago at the age of 72. I thought about how young 72 is - another indication that I am rather old. I am OLD.
I need some time to accept this new thought in my head. What is the routine? Anger, denial then acceptance?
Okay, I am angry! I am old! Grrrrrr!!
Until later
Ann and Dennis
There are significant events in your life that make you realize that you have aged. For some people, the 30th, 40th, 50th 0r 60th birthdays are milestones (I don't yet know beyond the 6th decade). For me, the years haven't meant as much as the events that have happened along the way.
In the past few years I have lost my waist line. This has been a huge reminder of my own age. OLD. Mary, of Peter, Paul and Mary, died two days ago at the age of 72. I thought about how young 72 is - another indication that I am rather old. I am OLD.
I need some time to accept this new thought in my head. What is the routine? Anger, denial then acceptance?
Okay, I am angry! I am old! Grrrrrr!!
Until later
Ann and Dennis
Sunday, September 6, 2009
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
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
Tuesday, September 1, 2009
Predictability
Dennis' MSA symptoms seem to have hit a plateau, for the moment. After Ireland, he was very tired, and then the surgeries set him back a bit. But, since his catheter fell out last month, he seems to be doing fairly well. At least nothing new has popped up for a while.
I have learned to enjoy these times. Some have been very brief, others quite a nice amount of time. I have stopped worrying about when it will end, and instead enjoy the time at the plateau.
I easily adapt to change, at least, for the most part. Actually, I thrive on change - if it isn't constant. Even so, the changes in Dennis aren't exactly celebratory in nature. So, instead, I celebrate the non-change times.
Right now, I know how the mornings will look. I understand and am able to deal with the best and worst case morning scenarios. I know how the day may go, whether he is with me or with one of his PCAs. We may not lead the most exciting life, on a day to day basis, but we still have our home, travel, friendship and a complete and total love for each other. So, predictability, at least in this case, is wonderful.
And predictability is what I am celebrating today.
Until tomorrow,
Ann and Dennis
I have learned to enjoy these times. Some have been very brief, others quite a nice amount of time. I have stopped worrying about when it will end, and instead enjoy the time at the plateau.
I easily adapt to change, at least, for the most part. Actually, I thrive on change - if it isn't constant. Even so, the changes in Dennis aren't exactly celebratory in nature. So, instead, I celebrate the non-change times.
Right now, I know how the mornings will look. I understand and am able to deal with the best and worst case morning scenarios. I know how the day may go, whether he is with me or with one of his PCAs. We may not lead the most exciting life, on a day to day basis, but we still have our home, travel, friendship and a complete and total love for each other. So, predictability, at least in this case, is wonderful.
And predictability is what I am celebrating today.
Until tomorrow,
Ann and Dennis
Friday, February 13, 2009
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.
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.
Saturday, January 31, 2009
The Good Fight
We have been on a few missions this week, trying to fight the good fight. We didn't make much headway, however.
The insurance story you already know. We visited his doctor at the Struther's clinic and she agreed to refer us to the Mayo clinic, but the insurance company turned us down one more time. We aren't finished, but we do need to find another tactic before proceeding.
The other issue is about our condo. Our windows are iced up and dripping with water. The builders say it is too much humidity - well, duh. They say we our causing too much humidity by taking a shower a day and cooking occasionally. The humidity problem has nothing to do with the construction of the condo.
I am taking the weekend to not think about any battles of any type. I have absolutely no interest in trying to figure out the next step at this moment. When I have re-energized , I will take up the fight once again. Right now, my brain needs a rest.
Until later,
Dennis and Ann
The insurance story you already know. We visited his doctor at the Struther's clinic and she agreed to refer us to the Mayo clinic, but the insurance company turned us down one more time. We aren't finished, but we do need to find another tactic before proceeding.
The other issue is about our condo. Our windows are iced up and dripping with water. The builders say it is too much humidity - well, duh. They say we our causing too much humidity by taking a shower a day and cooking occasionally. The humidity problem has nothing to do with the construction of the condo.
I am taking the weekend to not think about any battles of any type. I have absolutely no interest in trying to figure out the next step at this moment. When I have re-energized , I will take up the fight once again. Right now, my brain needs a rest.
Until later,
Dennis and Ann
Tuesday, December 30, 2008
The Test
I was just becoming satisfied that we had worked out all of our issues regarding personal care attendants, when JoAnn told us, a few weeks back, that should would not be available on Fridays for the month of January. I simply asked Raquel and she said "yes." So I was cool and relaxed when Raquel asked me today if it was next week that we needed her on Friday.
I said yes and Dennis yelled out a huge 'NO!'
As Raquel tripped off to the other room, we began a slightly heated discussion. It might have gotten hotter, but a guy was here fixing an installation problem with our blinds. Neither of us were in to looking like complete fools.
I understand that Dennis wants time alone. I love being alone in my home, and I don't get the opportunity very often. No matter how far away the PCA stays, he is still never alone. I feel the very same way about his presence. But, in reality, it's not the same. I can do anything I want to when Dennis is here. You do put limits on yourselves - like the really good fight we could have had - when someone else is in the house with you.
Oh the other hand, he has not proven to me that he can take care of himself without someone here. He believes he is capable, at least for one day a week.
So, a test for the rest of vacation, seems to be in order.
We are home alone for the next 5 days. If he can show me that he can get out of bed, get dressed, feed himself and get around the house without my help, I will give in to his request. I will not feel at ease, that day at work, but I will give him back his independence, at least one time.
Until the next time
Ann and Dennis
I said yes and Dennis yelled out a huge 'NO!'
As Raquel tripped off to the other room, we began a slightly heated discussion. It might have gotten hotter, but a guy was here fixing an installation problem with our blinds. Neither of us were in to looking like complete fools.
I understand that Dennis wants time alone. I love being alone in my home, and I don't get the opportunity very often. No matter how far away the PCA stays, he is still never alone. I feel the very same way about his presence. But, in reality, it's not the same. I can do anything I want to when Dennis is here. You do put limits on yourselves - like the really good fight we could have had - when someone else is in the house with you.
Oh the other hand, he has not proven to me that he can take care of himself without someone here. He believes he is capable, at least for one day a week.
So, a test for the rest of vacation, seems to be in order.
We are home alone for the next 5 days. If he can show me that he can get out of bed, get dressed, feed himself and get around the house without my help, I will give in to his request. I will not feel at ease, that day at work, but I will give him back his independence, at least one time.
Until the next time
Ann and Dennis
Thursday, July 10, 2008
Raquel, Dennis' PCA that we found on Craigslist, didn't show up today. The frustrating part about finding someone "inexpensive" is that they are generally younger and often not as dependable. I am not saying that all young people aren't dependable - my nephew, Hamed, is a great example of reliability and maturity. But Raquel, who is one of the sweetest girls I know and cares about Dennis, is rather flightly and unaware of how her actions impact others.
I had planned on dealing with selling the car that Dennis can no longer drive. Yes, I should have tried to sell this a year ago, but we kept hoping and I was over-whelmed with work and the changes in Dennis, so we just never got around to doing anything about our extra car. I needed to go over to our old houseto pick up the car, fill it with gas, drive it to yet another location, get a ride back to my car and drive home. And I was hoping to meet with a friend to take a break from all of this humdrum stuff.
Dennis told me to go and promised to sit in his office and be good. So, I went off, with reservations, to spend an hour with a friend, drive for two hours, deal with the car and check up on the house that was finally on the market. I was gone about 5 hours.
All seemed well when I came home. Dennis was happily eating chocolate cake and working on the computer. He had reconfigured the wireless settings that we had been experiencing trouble with since we had Comcast installed and seemed in an okay mood. Then he told me he wanted to take a nap. As I was helping him into bed, he told me he had been lonely while I was gone. He had been afraid to be alone and realized how hard everything was for him when no one else was around.
Which means to say, before I go back to work in the fall we will need to find a new PCA.
We both new this day would come, but we were still hoping that somehow Raquel would work out for us. She is so kind and gentle and Dennis really likes her. But, more than that we need dependability. We need to know that when I go to work, someone will be here to help him and keep him safe. I need to know that I will come home to Dennis in an upright, well fed, dressed and happy condition.
I know that there are others to be found that will have great attributes that we like and will be more realiable, too. But I am not looking forward to the process of looking, interviewing, hiring and breaking in someone new. I think I had better get use to this, however. Oh, well, live, love, laugh and be happy.
Until tommorow,
Ann and Dennis
I had planned on dealing with selling the car that Dennis can no longer drive. Yes, I should have tried to sell this a year ago, but we kept hoping and I was over-whelmed with work and the changes in Dennis, so we just never got around to doing anything about our extra car. I needed to go over to our old houseto pick up the car, fill it with gas, drive it to yet another location, get a ride back to my car and drive home. And I was hoping to meet with a friend to take a break from all of this humdrum stuff.
Dennis told me to go and promised to sit in his office and be good. So, I went off, with reservations, to spend an hour with a friend, drive for two hours, deal with the car and check up on the house that was finally on the market. I was gone about 5 hours.
All seemed well when I came home. Dennis was happily eating chocolate cake and working on the computer. He had reconfigured the wireless settings that we had been experiencing trouble with since we had Comcast installed and seemed in an okay mood. Then he told me he wanted to take a nap. As I was helping him into bed, he told me he had been lonely while I was gone. He had been afraid to be alone and realized how hard everything was for him when no one else was around.
Which means to say, before I go back to work in the fall we will need to find a new PCA.
We both new this day would come, but we were still hoping that somehow Raquel would work out for us. She is so kind and gentle and Dennis really likes her. But, more than that we need dependability. We need to know that when I go to work, someone will be here to help him and keep him safe. I need to know that I will come home to Dennis in an upright, well fed, dressed and happy condition.
I know that there are others to be found that will have great attributes that we like and will be more realiable, too. But I am not looking forward to the process of looking, interviewing, hiring and breaking in someone new. I think I had better get use to this, however. Oh, well, live, love, laugh and be happy.
Until tommorow,
Ann and Dennis
Wednesday, July 9, 2008
Drooling Issues
Dennis started his pesky drooling last year sometime. The kind of symptom that gets in the way of some activities, but not all of the time and everyday. He is now at the frustration drooling stage and he drools through day and night, but it is being treated with the drug Robinul, or a generic, to be exact.
Now this drug has all those dreaded side effects, some of which are the very symptom he is fighting against. But of course they are, you know that as well as I know that. Truth be told, it already seems to be loosing effectiveness, anyway, and the doctor seems very reticent to increase his dose, so he most likely will not be taking it for much longer.
It's not always the drooling itself that becomes the biggest issue, it's the problems the drooling causes when Dennis eats, sleeps, talks, drinks, and does anything what-so-ever. When he sleeps he drools, so the pillow cases always have stains on them. Oh well, at least we aren't washing whole sets of sheets everyday like we did all winter. His catheter does have some benefits. Talking and being heard and understood is difficult enough for Dennis, add in the drooling and it is close to impossible to comprehend what he is saying. Even I have troubles most days and need to remind him to talk to me 1) only when we are in the same room, 2) to look at me when he talks and 3) and to swallow before speaking.
But it's the eating that is most exasperating for both of us, and I am sure it isn't all that pleasant for the other people present when he eats. Everything he eats ends up staining the drool which is still coming out of his mouth even though he is eating. After he collects enough colored drool on his face it begins dripping on his clothes. He is forever holding a towel up to his face to collect the drool.
Ah, drool. Sometimes he reminds me of one of those huge dogs that you just got to love through the drool. He is a sweetie and easy to love, drool and all. I wish it didn't bother him so much, but the man has his dignity, one thing this syndrome takes away from a person rather quickly.
Until tommorow,
Ann and Dennis
Now this drug has all those dreaded side effects, some of which are the very symptom he is fighting against. But of course they are, you know that as well as I know that. Truth be told, it already seems to be loosing effectiveness, anyway, and the doctor seems very reticent to increase his dose, so he most likely will not be taking it for much longer.
It's not always the drooling itself that becomes the biggest issue, it's the problems the drooling causes when Dennis eats, sleeps, talks, drinks, and does anything what-so-ever. When he sleeps he drools, so the pillow cases always have stains on them. Oh well, at least we aren't washing whole sets of sheets everyday like we did all winter. His catheter does have some benefits. Talking and being heard and understood is difficult enough for Dennis, add in the drooling and it is close to impossible to comprehend what he is saying. Even I have troubles most days and need to remind him to talk to me 1) only when we are in the same room, 2) to look at me when he talks and 3) and to swallow before speaking.
But it's the eating that is most exasperating for both of us, and I am sure it isn't all that pleasant for the other people present when he eats. Everything he eats ends up staining the drool which is still coming out of his mouth even though he is eating. After he collects enough colored drool on his face it begins dripping on his clothes. He is forever holding a towel up to his face to collect the drool.
Ah, drool. Sometimes he reminds me of one of those huge dogs that you just got to love through the drool. He is a sweetie and easy to love, drool and all. I wish it didn't bother him so much, but the man has his dignity, one thing this syndrome takes away from a person rather quickly.
Until tommorow,
Ann and Dennis
Tuesday, July 8, 2008
Somedays You Just Need Help
Dennis hasn't been able to get out of bed since we returned from our vacation in Paris. It doesn't seem to be hypotension, but rather just plain low blood pressure. He's exhausted, coughing and choking and not eating well. He did eat toast with jelly, drank his daily portion of Boost and ate a few of the bbq'd ribs I bought for last nights dinner. Of course, just the simple act of putting his hand to his mouth with the food I cut up for him wears him out, so he finally decided to just stay in bed for the day.
I should let you know that my day job is in education, so I am off for the summer and able to spend more time with Dennis. And before anyone reading this thinks or says anything about teachers having 3 months off in the summer and how lucky we are, let me tell you something. That is exactly why I am in education. For the summers. So there.
We hired a PCA last winter when it became completely apparent that I was not going to be able to continue working full time knowing that I might come home, once more, to Dennis sprawled out on the floor in a pool of blood or Coke. We thought she was coming today, but we had forgotten to call her, so I was staying home. Since I have my summers off, it was not a problem. I had tons of laundry anyway and all those pictures of Paris to download and then upload and then share with friends via email and the boomer forum I hang out in all of the time and staying home all day seemed to be okay.
We found Dennis' PCA, Raquel, through Craigslist. I know this is not the traditional way to hire a care attendant, but when we called the organizations on the list that the Parkinson's social worker had given us, we figured we had to find a more affordable alternative. I mean we are already paying those huge cobra payments for his insurance and the co-payments for all the medications and physical and speech therapy and I was NOT going to give up Laticia, my housekeeper who makes the house sparkle every other Saturday. So we decided to find an independent PCA to save our budget.
We needed some help and we found Raquel. But Raquel was not coming with us to Paris.
I knew that Dennis wanted to see all of Paris. I mean ALL of Paris. I also knew that I was not going to be able to push his wheel chair everyday, everywhere. So we asked at the desk of the hotel about hiring someone to push him around for a day. We both wanted to visit the Latin quarter and it has lots of small streets and small hills. Pushing a 150 pound chair and 170 pound guy up even a slightly hilly area is not my idea of enjoying my vacation, so if we were going to see this part of Paris, we simply needed a strong kid.
We found Julien. An 18 year old, who just graduated from High School and whose mother runs an agency that takes small groups on different types of tours around Paris. Seems she wanted he son to get some work, so she lined him up to take us around the Latin Quarter. Julien knows the Latin Quarter well, since that is where he goes to school, so he was the perfect guide and he was also able to push Dennis up the hills and able to hold onto the chair while going down the hills. Sometimes a girl needs a young boy to help out.
Thanks, Julien, for helping us out. Thanks, Julien, for showing us the Latin Quarter and all the great stories.
Until tommorow,
Ann and Dennis
I should let you know that my day job is in education, so I am off for the summer and able to spend more time with Dennis. And before anyone reading this thinks or says anything about teachers having 3 months off in the summer and how lucky we are, let me tell you something. That is exactly why I am in education. For the summers. So there.
We hired a PCA last winter when it became completely apparent that I was not going to be able to continue working full time knowing that I might come home, once more, to Dennis sprawled out on the floor in a pool of blood or Coke. We thought she was coming today, but we had forgotten to call her, so I was staying home. Since I have my summers off, it was not a problem. I had tons of laundry anyway and all those pictures of Paris to download and then upload and then share with friends via email and the boomer forum I hang out in all of the time and staying home all day seemed to be okay.
We found Dennis' PCA, Raquel, through Craigslist. I know this is not the traditional way to hire a care attendant, but when we called the organizations on the list that the Parkinson's social worker had given us, we figured we had to find a more affordable alternative. I mean we are already paying those huge cobra payments for his insurance and the co-payments for all the medications and physical and speech therapy and I was NOT going to give up Laticia, my housekeeper who makes the house sparkle every other Saturday. So we decided to find an independent PCA to save our budget.
We needed some help and we found Raquel. But Raquel was not coming with us to Paris.
I knew that Dennis wanted to see all of Paris. I mean ALL of Paris. I also knew that I was not going to be able to push his wheel chair everyday, everywhere. So we asked at the desk of the hotel about hiring someone to push him around for a day. We both wanted to visit the Latin quarter and it has lots of small streets and small hills. Pushing a 150 pound chair and 170 pound guy up even a slightly hilly area is not my idea of enjoying my vacation, so if we were going to see this part of Paris, we simply needed a strong kid.
We found Julien. An 18 year old, who just graduated from High School and whose mother runs an agency that takes small groups on different types of tours around Paris. Seems she wanted he son to get some work, so she lined him up to take us around the Latin Quarter. Julien knows the Latin Quarter well, since that is where he goes to school, so he was the perfect guide and he was also able to push Dennis up the hills and able to hold onto the chair while going down the hills. Sometimes a girl needs a young boy to help out.
Thanks, Julien, for helping us out. Thanks, Julien, for showing us the Latin Quarter and all the great stories.
Until tommorow,
Ann and Dennis
Monday, July 7, 2008
Is it Parkinson's or MSA or SDS?
If you are reading this blog, I can only assume that you, too, are wondering about your own, or your loved one's, disease/syndrome. Dennis and I no longer expect any real answers from doctors or websites. They simply don't seem to exist.
A bit over four years ago, Dennis was diagnosed with Parkinson's. He had begun having touble with his serve and return during his tennis game. One of his legs was didn't seem to work right and his hands were beginning to show signs of tremors. After several visits to a nuerologist, it was finally determined that he did, indeed, have Parkinson's.
Now, since this blog is not about the past, but the present, I will not bore you with stories of how fast his Parkinson's seemed to be progressing. I will tell you, however, that he did qualify for social security disability within three years of his diagnosis and that says quite alot.
Last month, Dennis ended up in the hospital for a week and that was followed by two weeks of rehab in a care facility. He had started passing out on a regular basis. I have a great story about why I finally dialed 911, but I will save that for another time. Suffice it to say that he was given a new diagnosis, after leaving the nursing home, of either Shy-Drager or Multiple System Atrophy or possibly Parkinson's Plus. Or maybe something else. Sigh.
So, we decided, together, that we would write about our experience from this day forward. And here we are. Ann and Dennis. A 55 year old woman and a 60 year old man. With a syndrom or a disease that we share together.
We look forward to sharing our stories with you.
Until tommorow,
Ann and Dennis
A bit over four years ago, Dennis was diagnosed with Parkinson's. He had begun having touble with his serve and return during his tennis game. One of his legs was didn't seem to work right and his hands were beginning to show signs of tremors. After several visits to a nuerologist, it was finally determined that he did, indeed, have Parkinson's.
Now, since this blog is not about the past, but the present, I will not bore you with stories of how fast his Parkinson's seemed to be progressing. I will tell you, however, that he did qualify for social security disability within three years of his diagnosis and that says quite alot.
Last month, Dennis ended up in the hospital for a week and that was followed by two weeks of rehab in a care facility. He had started passing out on a regular basis. I have a great story about why I finally dialed 911, but I will save that for another time. Suffice it to say that he was given a new diagnosis, after leaving the nursing home, of either Shy-Drager or Multiple System Atrophy or possibly Parkinson's Plus. Or maybe something else. Sigh.
So, we decided, together, that we would write about our experience from this day forward. And here we are. Ann and Dennis. A 55 year old woman and a 60 year old man. With a syndrom or a disease that we share together.
We look forward to sharing our stories with you.
Until tommorow,
Ann and Dennis
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