It's late Sunday and we are covered in vomit and poop and a bit of blood. Dennis went out for one of his infamous walk for poo cruises around the hall with me. It was obvious he wasn't going a second round about half way through.
Then he got anxious. "I'm gonna fall...I'm gonna fall...I'm gonna fall..." Repeat, repeat and repeat again until the wish comes true.
And so, just a few feet shy of the bathroom, he did fall. And he took me down with him. After untangling ourselves, a few incompetent attempts at getting him up at the floor, I called 911. "He's fallen and I can't get him up." If I hadn't been so out of breath and frustrated, I probably would have laughed at what came out of my mouth.
The rescue team came quickly and the three of us were able to get him up into his chair.
It's time to break out the Hoyer.
Until later,
Ann and Dennis
Sunday, October 31, 2010
Saturday, October 30, 2010
Drama Free Hopes
I was exhausted, and wanted to sleep in for a little while this morning. The red walls took more time and coats of paint than I had hoped, and Dennis had been high maintenance for the past 2 weeks. I was looking for a drama free weekend.
But, ten minutes after Natalie, our Saturday morning PCA, had arrived, she knocked on the bedroom door to tell me the tube was clogged. So I crawled out of bed, and pushed hot water in and out, until the tube finally burst open. Back to Methodist Hospital, once again.
Natalie came along, and she and I had plenty of time to talk. She is a smart gal, and we both enjoy her presence in our house. She comes from a completely dysfunctional family, and yet came out on the top of life. She is one of the resilient children of her generation. Don't ask what I mean by that because I am not sure; it simply seems to be a correct statement.
Anyway, drama free doesn't seem to be the particular label for the weekend. And I am still tired, and I know that Dennis will wake me at 4 or 5 am once again tomorrow. Maybe, just because it's Halloween tomorrow, he will give me a big surprise by sleeping in himself. HA!!
Until later,
Ann and Dennis
But, ten minutes after Natalie, our Saturday morning PCA, had arrived, she knocked on the bedroom door to tell me the tube was clogged. So I crawled out of bed, and pushed hot water in and out, until the tube finally burst open. Back to Methodist Hospital, once again.
Natalie came along, and she and I had plenty of time to talk. She is a smart gal, and we both enjoy her presence in our house. She comes from a completely dysfunctional family, and yet came out on the top of life. She is one of the resilient children of her generation. Don't ask what I mean by that because I am not sure; it simply seems to be a correct statement.
Anyway, drama free doesn't seem to be the particular label for the weekend. And I am still tired, and I know that Dennis will wake me at 4 or 5 am once again tomorrow. Maybe, just because it's Halloween tomorrow, he will give me a big surprise by sleeping in himself. HA!!
Until later,
Ann and Dennis
Thursday, October 28, 2010
Vacuuming
No, not vacuuming the floors or rugs, but vacuuming out Dennis' throat. Yes, there is such a machine and we do have one.
I suppose this is another way of saying that Dennis is having more and more difficulty swallowing every day.
Which also could be another way of saying that I am grateful that he has a feeding tube.
Dennis fought the feeding tube for a while, but he began to drop weight at a high rate, and finally agreed. At first it was a gravity feed or a bolus feeding. He wanted bolus feedings (carer holding a tube of food for 30 minutes while it dripped in) during the day, and then only sporadically. Then he began to complain of acid reflux. He went through all the medications that his part D medicare would allow, but no luck. So we tried feeding at night with Dennis' head slight raised. Still stomach problems.
Eventually the gastric tube was changed to a J/G tube and this required a feeding pump. The acid reflux disappeared. And, except for the clogging, the explosions of a tube full of water or sticky food, and the pump not working in the UK, it has improved his life immensely.
So, if you or someone you know, are having difficultly swallowing, there are options. They aren't pretty, they aren't easy, they aren't very often fun. But if there is a will to live, these inconveniences my be worth it for you, too.
And there goes the vacuum, once again.
Until later,
Ann and Dennis
I suppose this is another way of saying that Dennis is having more and more difficulty swallowing every day.
Which also could be another way of saying that I am grateful that he has a feeding tube.
Dennis fought the feeding tube for a while, but he began to drop weight at a high rate, and finally agreed. At first it was a gravity feed or a bolus feeding. He wanted bolus feedings (carer holding a tube of food for 30 minutes while it dripped in) during the day, and then only sporadically. Then he began to complain of acid reflux. He went through all the medications that his part D medicare would allow, but no luck. So we tried feeding at night with Dennis' head slight raised. Still stomach problems.
Eventually the gastric tube was changed to a J/G tube and this required a feeding pump. The acid reflux disappeared. And, except for the clogging, the explosions of a tube full of water or sticky food, and the pump not working in the UK, it has improved his life immensely.
So, if you or someone you know, are having difficultly swallowing, there are options. They aren't pretty, they aren't easy, they aren't very often fun. But if there is a will to live, these inconveniences my be worth it for you, too.
And there goes the vacuum, once again.
Until later,
Ann and Dennis
Monday, October 25, 2010
Monitoring Dennis
Dennis has been waking up gurgling almost every morning for the past two weeks. Today, when I came home from my workout, he was in bed. When I left he was planning on going to the Courage Center for his own workout.
We have been pumping water into his g-tube constantly, and he has been using the nebulizer almost daily, but he is still gurgling. We are monitoring his oxygen level, and it's low, but not "frightfully" low. He has a temp, but not an "alarmingly" high temp.
We are trying to avoid going to the hospital, but I think he may be on the verge on bacterial pneumonia once again.
Aargghhhh.
Until later,
Ann and Dennis
We have been pumping water into his g-tube constantly, and he has been using the nebulizer almost daily, but he is still gurgling. We are monitoring his oxygen level, and it's low, but not "frightfully" low. He has a temp, but not an "alarmingly" high temp.
We are trying to avoid going to the hospital, but I think he may be on the verge on bacterial pneumonia once again.
Aargghhhh.
Until later,
Ann and Dennis
Thursday, October 21, 2010
For Judy (and everyone else too)
Judy,
You asked for an answer to a comment you left on my last post - Jealousy.
"I'm Judy from California. It was comforting to hear the patients point of view. I have MSA with very low blood pressure so I am not able to sit up. I am bed bound with 24 hour caregivers. A friend is typing this comment for me. I am able to eat soft solid foods. I understand Dennis's comments about normal people. I am interested in your other experiences with this disease. How others interpret the illness is often not what I are experiencing. I find this very frustrating. I dislike being told I'm not thirsty when I ask for a drink of water, just because I had some recently. I look forward to a response. Judy"
I can't answer you. I am a carer, and my view-point is that of a loving partner, who does interpret what Dennis is going through. I, too, would feel frustrated if I asked for water and was told I couldn't be thirsty. Perhaps you need to have a conversation with your care-givers. I don't know. I just don't.
There are blogs out there that are told from the MSA point of view. One of my favorite bloggers is Dan - We will go on. His blog is listed on the right side of my blog - blogs I follow. There are others, too, but Dan keeps up with on a very regular basis.
I would also encourage you to visit the yahoo groups at shydrager.yahoogroups.com. Pam does an excellent job of letting carers and patients speak their minds in a safe atmosphere. She also keeps on top of new research and shares openly.
No one person in this world sees the world as any other person. We each have our own perspective on everything and everyone that is around us. Perhaps this is compounded when one person is ill and another is not. I do not know.
What I do know is that Dennis knows that I love him with all my heart, and would do anything and everything for him. I know that I will only let loving and competent people work with him. I know that Dennis adores me, and loves me, even when we are frustrated with each other. I know that he wants a new brain, and God knows that I wish I could give him that.
You are more than welcome to read my blog at anytime, Judy. But it will always be written from my point-of-view. It's the only perspective that I have.
Until later,
Ann and Dennis
You asked for an answer to a comment you left on my last post - Jealousy.
"I'm Judy from California. It was comforting to hear the patients point of view. I have MSA with very low blood pressure so I am not able to sit up. I am bed bound with 24 hour caregivers. A friend is typing this comment for me. I am able to eat soft solid foods. I understand Dennis's comments about normal people. I am interested in your other experiences with this disease. How others interpret the illness is often not what I are experiencing. I find this very frustrating. I dislike being told I'm not thirsty when I ask for a drink of water, just because I had some recently. I look forward to a response. Judy"
I can't answer you. I am a carer, and my view-point is that of a loving partner, who does interpret what Dennis is going through. I, too, would feel frustrated if I asked for water and was told I couldn't be thirsty. Perhaps you need to have a conversation with your care-givers. I don't know. I just don't.
There are blogs out there that are told from the MSA point of view. One of my favorite bloggers is Dan - We will go on. His blog is listed on the right side of my blog - blogs I follow. There are others, too, but Dan keeps up with on a very regular basis.
I would also encourage you to visit the yahoo groups at shydrager.yahoogroups.com. Pam does an excellent job of letting carers and patients speak their minds in a safe atmosphere. She also keeps on top of new research and shares openly.
No one person in this world sees the world as any other person. We each have our own perspective on everything and everyone that is around us. Perhaps this is compounded when one person is ill and another is not. I do not know.
What I do know is that Dennis knows that I love him with all my heart, and would do anything and everything for him. I know that I will only let loving and competent people work with him. I know that Dennis adores me, and loves me, even when we are frustrated with each other. I know that he wants a new brain, and God knows that I wish I could give him that.
You are more than welcome to read my blog at anytime, Judy. But it will always be written from my point-of-view. It's the only perspective that I have.
Until later,
Ann and Dennis
Tuesday, October 19, 2010
Jealousy
I just walked away, and started watching my latest TV passion - Weeds. I stream it from Netflix onto our Wii, and I watch about 2 episodes an evening. Dennis eventually asked to come and sit by me in the living area and watched an episode with me.
Then he asked to go to bed. It was only 5:30 pm. I didn't argue and put him into bed in a propped up position so he could watch football and hockey and America's Next Top Model (sports and models, his two passions). A while later I returned to give him his meds, and even later to start his nightly feeding. It wasn't that we didn't talk, it's was just that I could tell he was in a funk. I knew he would tell me when he was ready.
It wasn't until this morning, when he woke me with a gurgling throat and I needed to prop him up, one more time. Then he told me that he told me he hated me because I was normal. I could eat by myself, put myself to bed, sit up in bed when I wanted and roll over in the night when I needed.
This is a picture of Dennis propped up in the morning - every pillow type thing we own just to sit him more or less upright so he could swallow everything that gathers in our throats over night. Most of us can simply cough out a bit of phlegm , but it isn't as easy for Dennis. Of course he hates my normalcy. He wants to be normal.
Pardon the language, but shit - this just won't happen.
We do still have a life that others would dream of having. But it's not normal, not for either one of us. And it never will be again. But it is our normal, and others may be jealous of what we have. Right now, it's Dennis being jealous of me.
And there it is - life.
Until later,
Ann and Dennis
Saturday, October 16, 2010
Two Helpful Links
I have been intending to add some links to my blog that may be helpful to others, but I have been a bit busy and forgetful lately. I will get around to it when it gets cold and we get home from our next vacation. For now, here are two links that I think you will all find interesting.
The first is simply the best idea ever - World MSA Day. I found out about too late to do anything this year, but next year I hope to plan something for awareness in my area. Perhaps you will wish to do the same. Her is the link.
http://www.world-msa-day.org/World-MSA-Day/Welcome.html.html
The next one I found through the Shy Drager support group on Yahoo. I know that all of us have had difficulty talking about MSA/Shy-Drager with others, even our doctors. This dude, Paul, made a pamphlet explaining the disease and it is wonderful. It's written in simple language and it's very well done.
http://tinyurl.com/PDCANADA-MSA
I hope that these two links will get you thinking today.
I received an update from the yahoo groups today, and there was a link for a clinical study that those of you in earlier stages of MSA may be interested in pursuing. Dennis does not qualify because of his severe speech and swallowing impairment, but I hope some one out there will qualify.
http://www.clinicaltrials.gov/ct2/show/NCT00977665?term=rasagiline+msa&rank
The first is simply the best idea ever - World MSA Day. I found out about too late to do anything this year, but next year I hope to plan something for awareness in my area. Perhaps you will wish to do the same. Her is the link.
http://www.world-msa-day.org/World-MSA-Day/Welcome.html.html
The next one I found through the Shy Drager support group on Yahoo. I know that all of us have had difficulty talking about MSA/Shy-Drager with others, even our doctors. This dude, Paul, made a pamphlet explaining the disease and it is wonderful. It's written in simple language and it's very well done.
http://tinyurl.com/PDCANADA-MSA
I hope that these two links will get you thinking today.
I received an update from the yahoo groups today, and there was a link for a clinical study that those of you in earlier stages of MSA may be interested in pursuing. Dennis does not qualify because of his severe speech and swallowing impairment, but I hope some one out there will qualify.
http://www.clinicaltrials.gov/ct2/show/NCT00977665?term=rasagiline+msa&rank
Friday, October 15, 2010
When?
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
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
Wednesday, October 13, 2010
Double Happiness
When not working in my new consulting job, or taking care of Dennis, I paint. I started working with symbols lately, and I am really enjoying having the time to be creative. It helps that Dennis is not only supportive, but encourages me. 
This painting has three Chinese characters for double happiness.
Double happiness is something that we all deserve. I am a believer in creating your own happiness. It's not always easy to be happy when surrounded with situations that can cause sorrow, but I believe it is possible.
Dennis makes me happy.
Painting makes me happy.
My new job makes me happy.
My family makes me happy.
Planning the next trip on the list makes me happy.
My friends make me happy.
Raquel makes me happy, especially when I watch her take such good care of my honey.
My readers make me happy - thank you!
But now I must go to the gym. I don't like it, but the way I feel after makes me happy. Maybe not double happy, but happy. And when I come home, I have the rest of the day to paint while Raquel works with Dennis. And that will make me double happy!
Until Later,
Ann and Dennis
This painting has three Chinese characters for double happiness.Double happiness is something that we all deserve. I am a believer in creating your own happiness. It's not always easy to be happy when surrounded with situations that can cause sorrow, but I believe it is possible.
Dennis makes me happy.
Painting makes me happy.
My new job makes me happy.
My family makes me happy.
Planning the next trip on the list makes me happy.
My friends make me happy.
Raquel makes me happy, especially when I watch her take such good care of my honey.
My readers make me happy - thank you!
But now I must go to the gym. I don't like it, but the way I feel after makes me happy. Maybe not double happy, but happy. And when I come home, I have the rest of the day to paint while Raquel works with Dennis. And that will make me double happy!
Ann and Dennis
Tuesday, October 12, 2010
Don't Watch the Video Until After You Have Read The Post
Jet lag and hurt feelings have subsided, and I am back working at my new part-time job. I have scheduled 3 weeks worth of visits to schools to meet staff, encourage, and congratulate everyone on any progress they have made. It's nice to work and get out and about. It's great that my boss is so accomodating about when I do my work. I like consulting work.
On our trip to England I learned that I cannot travel with Dennis alone. Maybe for a few days, but two weeks was overwhelming. He can do so little for himself anymore. I feel as if I am doing the eating, the walking, the talking, the everything for two people. When he needed a day off, I did too. It was a great trip, and Ralph and Jane were wonderful about helping, but it's all the personal care and the lifting that gets to be too much. So Raquel will travel with us from now on, or we will find a temporary agency to give us help if she cannot come.
He no longer can feed himself, but he is still able to each very soft food as long as it is early in the day. At least by feeding him, we keep the mess to a minimum. This means less laundry and less sweeping. Who could complain about that?
Saturday we attended National Karate's big tournament in Minneapolis. National Karate is the company that my nephew, Hamed, works for. He is considered to be one of the top guys in his category. He is a small guy, but all muscle and lots of flexibility. We were not able to stay long enough to see the final sparring event - called superfights, but he did win in his category. The video above is not great, but Hamed is the dude that starts each time on the left. This is not the superfight, but an earlier sparring event that we did attend.
So, here I am, back to my normal and ready to take on whatever comes my way. With the guy I love at my side, and lots of help, we are able to live a pretty great life.
Until later,
Ann and Dennis
Monday, October 11, 2010
Thank You
Thank you to all of you who commented on my last post. I have had such a difficult time coming back to here since those few negative comments from past posts. Your new comments have given me the chance to put those others behind me.
I am sensitive, I admit this. I take my critics words personally, and they hurt. I must get better at this, because I will always have those that dislike me for speaking my truth.
I will go on, but give me a few more days to let your kind words fill me up again.
Until later,
Ann and Dennis
I am sensitive, I admit this. I take my critics words personally, and they hurt. I must get better at this, because I will always have those that dislike me for speaking my truth.
I will go on, but give me a few more days to let your kind words fill me up again.
Until later,
Ann and Dennis
Sunday, October 10, 2010
Anger, Frustration and Reader's Judgements
A while back I posted that I was so frustrated with Dennis that I slapped him on his back. I received lots of feedback and emails, most of them putting me in my place.
What a horrible carer I am....how awful Dennis must have felt....that I am a woman that should be taken away from Dennis.
This feedback hurt. I have tried to be honest and open about how we are dealing with this horrendous situation. I felt horrible after slapping him, and apologized over and over.
I am far from perfect. I have never pretended to be perfect. I get angry and act in ways that are, at times, horrible. Dennis gets angry at times and acts in ways that are horrible. He is also far from perfect.
I am not sure that I want to write any longer. I want to be honest, but I do not want my honesty to bite me back.
I will think about this for a while.
Until (maybe) later,
Ann and Dennis
Still loving each other the best that we can
What a horrible carer I am....how awful Dennis must have felt....that I am a woman that should be taken away from Dennis.
This feedback hurt. I have tried to be honest and open about how we are dealing with this horrendous situation. I felt horrible after slapping him, and apologized over and over.
I am far from perfect. I have never pretended to be perfect. I get angry and act in ways that are, at times, horrible. Dennis gets angry at times and acts in ways that are horrible. He is also far from perfect.
I am not sure that I want to write any longer. I want to be honest, but I do not want my honesty to bite me back.
I will think about this for a while.
Until (maybe) later,
Ann and Dennis
Still loving each other the best that we can
Monday, October 4, 2010
Home Again
The trip was as much work as I anticipated, but it was worth the back aches and a few tiffs between Dennis and me. Ralph was great, once again, about pushing Dennis around whenever we were outside. He even pushed him for over an hour as we walked through Hamstead Heath, up and down hills, over muddy and rocky paths and all without a complaint.
But the food pump did not work. We carried 50 pounds of food across the great pond all for naught. We never were able to figure out why it wasn't working, but it would not take a charge. It must have shorted out, because it did not work once we returned home, either. I did try to feed him with gravity, but he became nauseous and wanted nothing to do with it. So we purchased Ensure and Complan and lots of deserts to fill him up. Some days he was able to eat quite a bit, but other days we simply depended on empty calories.
We are home now for two months, while I work and Dennis rests up.
Until jet lag subsides,
Ann and Dennis
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