Dennis has been going to the Courage Center once again. He quit for a bit, simply because he hated Metro Mobility. Now that Raquel has her license once again, he tries to go at least twice a week.
Today Raquel told me he worked out really hard. He was on the reclining walker for 35 minutes and did his upper body work, too. He needs to keep up with this to keep his muscle atrophy at bay for as long as possible.
He has been getting muscle fatigue quite often lately. He also has been stiffening up more often. It is becoming more and more difficult to get him in and out of the car. We are starting the process of looking at accessible vans. Our lease is up this spring, so hopefully we can turn it in and purchase a used van that he can be wheeled in and out of easily.
His lift chair arrived on Sunday, allowing him to sit in the living room without his wheel chair. It keeps me from breaking my back when helping him up and out of a seat.
He is also looking at those scooters, but I am not encouraging this. I am so afraid that one he gets one of those, he will never see the necessity of walking again. But without his mobility, he will become unhappy. And we do not want an unhappy Dennis.
So we will continue to look for more ways to keep his life as normal as possible.
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.
Monday, November 30, 2009
Friday, November 27, 2009
Funeral Day
Sleep was easier for both of us last night. The turkey might have helped. More likely, though, is that fact that we had fun with Jane, Ralph, Hamed and Ashley yesterday.
Hamed, Ashley and I shared stories with Jane about Mother's day at the karate tournament. We laughed about how mother complained to Ashley about how long she had been there, and was Hamed ever going to start sparing. Then, on way home, she told me how much fun she had at the tournament.
We talked about Mother switching from a Packer backer, to a Vikings fan. Or rather, that she really didn't care who won the game, as long as someone won.
We talked only about recent memories, and felt better about her dying while she was still happy and healthy.
Today is her funeral. In a few minutes, we will begin the drive to Eau Claire, perhaps for the last time in each of our lives. Then we will begin the process of acceptance.
Until later,
Ann and Dennis
Hamed, Ashley and I shared stories with Jane about Mother's day at the karate tournament. We laughed about how mother complained to Ashley about how long she had been there, and was Hamed ever going to start sparing. Then, on way home, she told me how much fun she had at the tournament.
We talked about Mother switching from a Packer backer, to a Vikings fan. Or rather, that she really didn't care who won the game, as long as someone won.
We talked only about recent memories, and felt better about her dying while she was still happy and healthy.
Today is her funeral. In a few minutes, we will begin the drive to Eau Claire, perhaps for the last time in each of our lives. Then we will begin the process of acceptance.
Until later,
Ann and Dennis
Thursday, November 26, 2009
Raquel
I was very wise on this Thanksgiving morning! I had Raquel come in and get Dennis ready, so that I could get dinner ready and the house picked up. It turned out to be a very good choice.
Neither Dennis or I got much sleep last night. As I said the other day, Dennis gets needy when I am taking care of something else, and I get overwhelmed. I wish I could be there for him, and him alone, 24/7, but it isn't in the cards. And for so many reasons.
I would kill him after about 2 weeks, is at the top of the list.
Under that heading comes financial needs.
Then there is the needing to be able to have a discussion with someone that I can understand.
Of course, our loving relationship suffering because our roles would become to different.
I could go on, but why?
Anyways, I am glad that Raquel could come in and get him showered, dressed and ready for the day. She also got his wheel chair sparkling for tomorrow and the big day ahead.
She will come in tomorrow, also, to get him showered and into his suit. This will give me the chance to be funeral ready before the 2 hour drive to Eau Claire.
Sometimes I feel so very wise.
Until later,
Ann and Dennis
Neither Dennis or I got much sleep last night. As I said the other day, Dennis gets needy when I am taking care of something else, and I get overwhelmed. I wish I could be there for him, and him alone, 24/7, but it isn't in the cards. And for so many reasons.
I would kill him after about 2 weeks, is at the top of the list.
Under that heading comes financial needs.
Then there is the needing to be able to have a discussion with someone that I can understand.
Of course, our loving relationship suffering because our roles would become to different.
I could go on, but why?
Anyways, I am glad that Raquel could come in and get him showered, dressed and ready for the day. She also got his wheel chair sparkling for tomorrow and the big day ahead.
She will come in tomorrow, also, to get him showered and into his suit. This will give me the chance to be funeral ready before the 2 hour drive to Eau Claire.
Sometimes I feel so very wise.
Until later,
Ann and Dennis
Needy
Dennis gets so needy when I am involved in someone else's life - or death, in this case. He was extra needy when my dad died, when I was spending time cleaning out my parent's house, and now, once again.
I think it is because he wants to help, and he cannot. So, instead he wants more of my attention, and frankly, I don't have the energy left to feed his needs.
So he wakes me up in the middle of the night. I cannot understand him at night. He wants something, or wants to say something, but I can't give him what he wants because I don't know what he wants. So he sighs and moans, and I am wide awake.
And, now both of us are whining - he in bed and me right here. Sigh.....
Until later,
Ann and Dennis
Happy Thanksgiving, one and all.
I think it is because he wants to help, and he cannot. So, instead he wants more of my attention, and frankly, I don't have the energy left to feed his needs.
So he wakes me up in the middle of the night. I cannot understand him at night. He wants something, or wants to say something, but I can't give him what he wants because I don't know what he wants. So he sighs and moans, and I am wide awake.
And, now both of us are whining - he in bed and me right here. Sigh.....
Until later,
Ann and Dennis
Happy Thanksgiving, one and all.
Monday, November 23, 2009
Another Life Change
Was it really only six months ago that my father died?
...3 months ago that I sold my parents house and moved mother to an assisted living home near me?
...1 month ago that I defined, in my words, being old?
Today I must report that my mother has died.
I am happy that both of my parents died while they were still relatively happy and mobile. All of my grandparents suffered miserably before dying. They were able to end that particular cycle of events.
Still.....
Today I made Dennis promise that he would not die within the next 6 months. I am simply not ready for that.
Until later,
Ann and Dennis
...3 months ago that I sold my parents house and moved mother to an assisted living home near me?
...1 month ago that I defined, in my words, being old?
Today I must report that my mother has died.
I am happy that both of my parents died while they were still relatively happy and mobile. All of my grandparents suffered miserably before dying. They were able to end that particular cycle of events.
Still.....
Today I made Dennis promise that he would not die within the next 6 months. I am simply not ready for that.
Until later,
Ann and Dennis
Thursday, November 19, 2009
ER, again...
Last night Dennis and I took another trip to the ER. I sent him by ambulance and followed in the car. When I arrived, and walked up to the window, the nurse handed me a visitor pass with the room number already written on it. She greeted me by name. This isn't a place where I would ever have expected to become well known. Sigh...
When we came home, we both laughed about wishing we could get frequent flyer miles.
I knew this new cath was going to be an on-going story.
Until later,
Ann and Dennis
When we came home, we both laughed about wishing we could get frequent flyer miles.
I knew this new cath was going to be an on-going story.
Until later,
Ann and Dennis
Wednesday, November 18, 2009
Roles and Responsiblities
At work today we were discussing the age old problem of prepping, cooking and cleaning up after the holiday meals. Men, age and women all entered into the conversation. Who should prep? Clean the house? Cook the food? Serve the food? Clean up later and watch football?
Then I threw in the disability card. I swore that I would never throw in a card for anything. I wish I could take it back. But it is out there and there is little I can do about it now. I played the one-up-bull.
I have always been a bit militant about the "duties" of women and men. When I was young, there were definite roles, which was normal for my generation. I never liked these roles, mostly because I hated putting my hands in dirty dishwater. Much to my mother's chagrin, I began to make a fuss as the men parted to the TV area and the women were dismissed to the kitchen. I wasn't popular at family gatherings for a while.
Dennis was a sweet change into my life. He cooked and he did dishes. We found a great balance with one of doing job or the other, with very little quibbling.
But now, at family gatherings....
Dennis can't do much. Mother forgets, and doesn't do much. For some reason, my nephew and his girlfriend just don't do anything. Jane and Ralph aren't here often. Paul is never here; at least he does not add to the load. But for the first time in my life I am okay with most of this. I don't care about the disabilities standing in the way of family gatherings right now.
Dennis and Mother can't help their situations. Hamed and Ashely will eventually be in charge of hosting events, and the payback will be their due. Jane and Ralph always do their share when they are around. And roles and boundaries just are not as important as they were at other times in my life.
Maybe I just grew up?
Until later,
Ann and Dennis
Then I threw in the disability card. I swore that I would never throw in a card for anything. I wish I could take it back. But it is out there and there is little I can do about it now. I played the one-up-bull.
I have always been a bit militant about the "duties" of women and men. When I was young, there were definite roles, which was normal for my generation. I never liked these roles, mostly because I hated putting my hands in dirty dishwater. Much to my mother's chagrin, I began to make a fuss as the men parted to the TV area and the women were dismissed to the kitchen. I wasn't popular at family gatherings for a while.
Dennis was a sweet change into my life. He cooked and he did dishes. We found a great balance with one of doing job or the other, with very little quibbling.
But now, at family gatherings....
Dennis can't do much. Mother forgets, and doesn't do much. For some reason, my nephew and his girlfriend just don't do anything. Jane and Ralph aren't here often. Paul is never here; at least he does not add to the load. But for the first time in my life I am okay with most of this. I don't care about the disabilities standing in the way of family gatherings right now.
Dennis and Mother can't help their situations. Hamed and Ashely will eventually be in charge of hosting events, and the payback will be their due. Jane and Ralph always do their share when they are around. And roles and boundaries just are not as important as they were at other times in my life.
Maybe I just grew up?
Until later,
Ann and Dennis
Sunday, November 15, 2009
Nuerological Disorder Family Member #3
Friday I took Shiva, the cat, to the vet for her check-up and shots. Whenever I see her around other cats, I am shocked by her size. She is about 1 1/2 years old, and still weighs under 7 pounds. The doctor said she is the perfect weight for her size.
But, the doctor also confirmed something that I had been thinking for a very long time.
She has a neurological disorder. Her brain is only half developed. In other words, she is a half-wit.
This explains why Shiva cannot leap, or misses when she attempts a leap. It also explains why she simply tips over at times just walking along. She still is cat like and wants to perch, but she needs help getting up on the back of chairs or sitting on the window sill.
The staff showed me one of the clinic cats with the same disorder. She fell over, too, had a hard time playing with toys and looked befuddled.
I am simply destined to be surrounded by special needs living things. Oh well, at least they are all of sweet dispositions.
Until later,
Ann and Dennis
But, the doctor also confirmed something that I had been thinking for a very long time.
She has a neurological disorder. Her brain is only half developed. In other words, she is a half-wit.
This explains why Shiva cannot leap, or misses when she attempts a leap. It also explains why she simply tips over at times just walking along. She still is cat like and wants to perch, but she needs help getting up on the back of chairs or sitting on the window sill.
The staff showed me one of the clinic cats with the same disorder. She fell over, too, had a hard time playing with toys and looked befuddled.
I am simply destined to be surrounded by special needs living things. Oh well, at least they are all of sweet dispositions.
Until later,
Ann and Dennis
Wednesday, November 11, 2009
Telephones
When I was in my twenties, I became involved with a guy who turned out to be a bum. He didn't pay bills, show up for work and had two kids who were in trouble all of the time. The telephone rang all the time with complaints about one of the three of them. This was long before caller ID and I dreaded hearing the phone ring.
The relationship ran it's course, but the dread of the phone calls did not. I had become conditioned to break out in a sweat whenever the phone began to ring. I spent the better part of my adult life running away from telephone.
By the time Dennis and I found each other, I had shaken off the fear of phone calls. But in the last two years, the old feelings have begun to return.
A 6:00 am phone ringing means a PCA isn't going to show up for work. This, in turn, means that I must scramble to find coverage for Dennis, or take a day off of work.
Any phone call between 8:00 and 4:00 could be either about Mother or Dennis - a fall, a tear in the skin (really, I have had a call about this), someone is going to the hospital or worse. Often, I get phone calls from Assisted Living or the Transitional Care Unit, telling me that Mother is in trouble (she and a friend were leaving the grounds to walk)or she is missing a meal or some other silly thing. Then, the bill comes at the end of the month and there is a charge for these calls! I didn't want the call in the first place, and now you are going to charge me for it?
At least these days we have caller ID and I know who is calling, if not why they are calling.
Until later,
Ann and Dennis
The relationship ran it's course, but the dread of the phone calls did not. I had become conditioned to break out in a sweat whenever the phone began to ring. I spent the better part of my adult life running away from telephone.
By the time Dennis and I found each other, I had shaken off the fear of phone calls. But in the last two years, the old feelings have begun to return.
A 6:00 am phone ringing means a PCA isn't going to show up for work. This, in turn, means that I must scramble to find coverage for Dennis, or take a day off of work.
Any phone call between 8:00 and 4:00 could be either about Mother or Dennis - a fall, a tear in the skin (really, I have had a call about this), someone is going to the hospital or worse. Often, I get phone calls from Assisted Living or the Transitional Care Unit, telling me that Mother is in trouble (she and a friend were leaving the grounds to walk)or she is missing a meal or some other silly thing. Then, the bill comes at the end of the month and there is a charge for these calls! I didn't want the call in the first place, and now you are going to charge me for it?
At least these days we have caller ID and I know who is calling, if not why they are calling.
Until later,
Ann and Dennis
Friday, November 6, 2009
Something New?
Oy! A full moon and Halloween candy makes for a very, very long week in schools. I am very happy this week has been checked off and completed.
I don't think I can blame candy or a full moon for Dennis' latest trials and tribulations, however.
He has been so much better, since our brief time with a family therapist (we were deemed in darned good shape considering our situation) about waking me up in the middle of the night. However, the last few nights he has yelled out "seven" until I was awake enough to tend to his needs.
Seven is the level of pain he is experiencing. In the ER and Urgent Care centers, they have a rating scale, 1 to 10, on pain. Dennis, not being a stoic Scandinavian, heads directly to the high numbers. We have, however, agreed that a 7 is "wake Ann," worthy.
He has been having issues with his cath. He feels it is clogged, even though there is some urine in the bag. I have been able, via a syringe, been able to pull out quite a bit of urine whenever he announces to me, "Seven."
Raquel called the urologist, and they figured he had a bladder infection. They prescribed another antibiotic for him. I am doubting that this is the real problem. Okay, I am not a doctor, nor do I play one on TV, but I know that something is amiss.
Unfortunately, I fear that more is to come.
Until tomorrow,
Ann and Dennis
I don't think I can blame candy or a full moon for Dennis' latest trials and tribulations, however.
He has been so much better, since our brief time with a family therapist (we were deemed in darned good shape considering our situation) about waking me up in the middle of the night. However, the last few nights he has yelled out "seven" until I was awake enough to tend to his needs.
Seven is the level of pain he is experiencing. In the ER and Urgent Care centers, they have a rating scale, 1 to 10, on pain. Dennis, not being a stoic Scandinavian, heads directly to the high numbers. We have, however, agreed that a 7 is "wake Ann," worthy.
He has been having issues with his cath. He feels it is clogged, even though there is some urine in the bag. I have been able, via a syringe, been able to pull out quite a bit of urine whenever he announces to me, "Seven."
Raquel called the urologist, and they figured he had a bladder infection. They prescribed another antibiotic for him. I am doubting that this is the real problem. Okay, I am not a doctor, nor do I play one on TV, but I know that something is amiss.
Unfortunately, I fear that more is to come.
Until tomorrow,
Ann and Dennis
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