Let me say this........I'm officially on overload! We took Mike to the ER yesterday because of blood in his urine and his back hurt so bad that he couldn't stand up straight and could barely walk. The ER was a complete waste of time. They looked at him visually, did a urine culture and said he had cystitis. Wrote a prescription for an antibiotic and sent us home.
We got him home and I fed him dinner, gave him his pills and antibiotic and 30 minutes later he threw them all up. Called the hospital and they said if he threw up anymore (persistently) call them back. He didn't so we got him to bed.
Ron and my older brother are with him today so I can work. Then it is all on Butch starting tomorrow. I have to make sure Ron gets a good night's sleep tonight since we have to be at the hospital by 6:00 am tomorrow.
Ain't timing everything??????????????????????
Wednesday, May 29, 2013
Tuesday, May 28, 2013
I have a tornado of my own. Mike's condition is rapidly declining even though his psychiatrist said his dementia is in the early stages. What the psychiatrist isn't aware of is how much time we are having to devote to caring for Mike.
Yesterday we took his meals to him and I was helping him get his lunch ready. I told him to get some mustard out of the refrigerator and he brought the butter to the table and left the refrigerator door open. I told him to look at the refrigerator and tell me what he needed to do. He said, "Clean the microwave". I suggested shutting the refrigerator door.
He was obsessed about being constipated which I never know if he really is or not. I gave him two ounces of prune juice and told him to drink plenty of water and be patient. We left him and went home after a couple of hours.
I talked to him several times after that and he said he was being patient but I have no idea whether he drank a gallon of prune juice or not. Ron and I got busy working in the yard and about 3 hours later I checked for phone messages and had none. VERY UNUSUAL.....I called Mike and got no answer. We called for another 45 minutes and then drove over to his house. It was about 7:00 pm. We found him in the floor face down.....poop everywhere....his nose cut, his arms scraped, bump on his head. He was dead weight. Ron managed to get him up and then got him showered. With out going into further details......it was a mess!
I called my older brother and got him over there and he stayed the night with Mike. Ron took off work today and will stay with him today. I don't know what our next step will be.
If this had happened this Friday he would have been on the floor for days. Ron's surgery is day after tomorrow! I don't know what I'm going to do. I can't be in two places at once.
Yesterday we took his meals to him and I was helping him get his lunch ready. I told him to get some mustard out of the refrigerator and he brought the butter to the table and left the refrigerator door open. I told him to look at the refrigerator and tell me what he needed to do. He said, "Clean the microwave". I suggested shutting the refrigerator door.
He was obsessed about being constipated which I never know if he really is or not. I gave him two ounces of prune juice and told him to drink plenty of water and be patient. We left him and went home after a couple of hours.
I talked to him several times after that and he said he was being patient but I have no idea whether he drank a gallon of prune juice or not. Ron and I got busy working in the yard and about 3 hours later I checked for phone messages and had none. VERY UNUSUAL.....I called Mike and got no answer. We called for another 45 minutes and then drove over to his house. It was about 7:00 pm. We found him in the floor face down.....poop everywhere....his nose cut, his arms scraped, bump on his head. He was dead weight. Ron managed to get him up and then got him showered. With out going into further details......it was a mess!
I called my older brother and got him over there and he stayed the night with Mike. Ron took off work today and will stay with him today. I don't know what our next step will be.
If this had happened this Friday he would have been on the floor for days. Ron's surgery is day after tomorrow! I don't know what I'm going to do. I can't be in two places at once.
Friday, May 24, 2013
A glimmer of hope!
I live in a state among some amazing neighbors! Seeing the lines and lines of people, miles long, waiting to just sign-up to volunteer. It's absolutely amazing. And the outpouring of support from people all over the US and the world has been amazing. The damage here was so widespread it is hard to get help to all the areas affected by the storms. A tornado hit on Sunday and wiped out two smaller towns east of us and of course the huge one on Monday hit a larger metropolitan area. So many displaced families. The need is great!
We had several staff members who lost their homes and others had family members who lost their homes. One young man here was helping his cousin go through the rubble of his home looking for the engagement ring he had purchased for his girlfriend. The house was completely flattened (and had just been purchased). By some miracle Darrel looked down into the rubble and something caught his eye.....the ring box. His cousin was elated. It was a sign that everything would be OK....life goes on.
Our young teacher friend, Justin Ayres, who was in the Plaza Tower school met with the other survivors from the school yesterday. It was an emotional reunion but a healing one. One little boy who had been seriously injured in the storm was there and wanted to give Mr. Ayres a gift for "saving his life". Justin was very moved by the child's gesture and so relieved that he was well enough to attend. Justin said he had a deep puncture wound in his back the size of a brick!
I think I know how Oklahomans will be spending Memorial weekend!
We had several staff members who lost their homes and others had family members who lost their homes. One young man here was helping his cousin go through the rubble of his home looking for the engagement ring he had purchased for his girlfriend. The house was completely flattened (and had just been purchased). By some miracle Darrel looked down into the rubble and something caught his eye.....the ring box. His cousin was elated. It was a sign that everything would be OK....life goes on.
Our young teacher friend, Justin Ayres, who was in the Plaza Tower school met with the other survivors from the school yesterday. It was an emotional reunion but a healing one. One little boy who had been seriously injured in the storm was there and wanted to give Mr. Ayres a gift for "saving his life". Justin was very moved by the child's gesture and so relieved that he was well enough to attend. Justin said he had a deep puncture wound in his back the size of a brick!
I think I know how Oklahomans will be spending Memorial weekend!
Wednesday, May 22, 2013
Serve and Protect
We all know that police officers and fire fighters put their
lives on the line every day to serve and protect but did you ever think that
your neighborhood schools might be full of individuals that would gladly
sacrifice themselves in order to protect your children?
When I was growing up we would have never considered
teaching a dangerous profession but in today’s world that is what we have seen
it become. We have seen teachers shield
children from the bullets of a mad man and we have witnessed teachers using
their bodies to shield children from the ravages of a tornado. Does your job entail sacrificing yourself to
save others? Mine doesn’t.
What saddens me is that the very people who are willing to
risk everything to protect your children are not given the respect their education
and dedication deserve. They are often
looked upon as glorified babysitters rather than the educators that they
are. They are held accountable for
someone else’s bad parenting; they are blamed when a child doesn’t learn
because he is disruptive and refuses to work.
They are held accountable for test scores over which they have no
control. They are continually expected
to do more with fewer resources. We
pass laws governing classroom size but never enforce. It is easier to pay a fine than to adhere to what is right.
Like police officers they are constantly told how to do
their job. And, like police officers,
they are almost always under paid for the job they do.
Yet, in spite of the low pay and the unreasonable expectations they are willing to work to open the eyes of young people to all the possibilities our world has to offer and they prove their dedication by sacrificing their own lives to protect the children in their care.
Tuesday, May 21, 2013
Tornado Alley
We survived yesterdays horrific storms but many of our friends were not so lucky. A young friend of ours whose wife teaches with my daughters was in the Plaza school when it took a direct hit. We were unable to get any word of his condition until late last night. Cell phones were down and of course no one could even get to that area but finally someone called his wife to tell her they had seen him and he was helping pull children from the rubble. Later we learned that none of the children he removed were still alive. He is in shock (understandably) and it will take a long time for him to process what has happened. School was to be out for good this Friday.
Ron left Okla. City at 5:00 yesterday and didn't get home until midnight. We are just about 10 miles south of the path of the tornado so getting home was an obstacle course. But at least everyone is ok.
I was texting my best friend when the storm hit and she lives right in the path of the storm. She has MS and was home alone. She text me that she was in her hall but was scared. The next text I received said "I can hear it" and then I got nothing further. I suspected her cell phone was dead but it took awhile to find out just where the tornado hit and I realized it was about a block from her house. I finally got a call from her this morning and though they have minor damage and a lot of debris in their yard, no electricity or water, they are safe and unharmed. My next question to her was "are you ready move?" This is the 3rd major tornado that barely missed their house.
We are setting up here at our hospital to take in displaced children with special needs. We are also doing a wheelchair and adaptive clinic for people who lost wheelchairs or they were damaged. That's going out as a public announcement this morning. We may use our camp cabins to house some displaced special needs adults whose group home was destroyed last night.
This is whats great about Oklahomans. We've unfortunately had a lot of practice as responders to horrific events in our state. People are more than generous.
Nothing like an F5 tornado to make you gain perspective. The death toll keeps rising and so many of those are children. A little thing like schizophrenia and dementia just don't seem that big of a deal in the light of day!
Check this out! Watch to the end.
This is the school where Justin was a teacher. Several of the children drowned in the basement. |
Ron left Okla. City at 5:00 yesterday and didn't get home until midnight. We are just about 10 miles south of the path of the tornado so getting home was an obstacle course. But at least everyone is ok.
I was texting my best friend when the storm hit and she lives right in the path of the storm. She has MS and was home alone. She text me that she was in her hall but was scared. The next text I received said "I can hear it" and then I got nothing further. I suspected her cell phone was dead but it took awhile to find out just where the tornado hit and I realized it was about a block from her house. I finally got a call from her this morning and though they have minor damage and a lot of debris in their yard, no electricity or water, they are safe and unharmed. My next question to her was "are you ready move?" This is the 3rd major tornado that barely missed their house.
This is what came within two blocks of her home! |
We are setting up here at our hospital to take in displaced children with special needs. We are also doing a wheelchair and adaptive clinic for people who lost wheelchairs or they were damaged. That's going out as a public announcement this morning. We may use our camp cabins to house some displaced special needs adults whose group home was destroyed last night.
This is whats great about Oklahomans. We've unfortunately had a lot of practice as responders to horrific events in our state. People are more than generous.
Nothing like an F5 tornado to make you gain perspective. The death toll keeps rising and so many of those are children. A little thing like schizophrenia and dementia just don't seem that big of a deal in the light of day!
Check this out! Watch to the end.
Monday, May 20, 2013
Monday Blues
What a Monday it has been....Mike called at 6:30 am to tell me he had taken the wrong meds. He had taken his night time pills instead of the morning pills so I ran over there to see just what he'd taken. It wasn't too awful since most of them he takes twice/day anyway but there were 3 that needed to be omitted tonight since he has already taken them. I was mostly concerned about the anti-psychotic medication but we were OK there.
He is getting closer to requiring 24/7 care. I just don't know how I'm going to pull it off yet. I'm still trying to decide what is best all the way around both financially and with his safety as a priority. But this is hard!
Last night I went to bed feeling completely overwhelmed. But if I just slow down and tackle each thing one at a time I'll eventually get this under control.
Ron and I have one more weekend before his surgery. I just went to the doctor myself because I was pretty sure I had a kidney infection coming on and I was right. Thank goodness I caught it early. I can't afford to be sick right now.
He is getting closer to requiring 24/7 care. I just don't know how I'm going to pull it off yet. I'm still trying to decide what is best all the way around both financially and with his safety as a priority. But this is hard!
Last night I went to bed feeling completely overwhelmed. But if I just slow down and tackle each thing one at a time I'll eventually get this under control.
Ron and I have one more weekend before his surgery. I just went to the doctor myself because I was pretty sure I had a kidney infection coming on and I was right. Thank goodness I caught it early. I can't afford to be sick right now.
Friday, May 17, 2013
Appointment Update
Yesterday my older brother took Mike to see his psychiatrist. I always send the notebook with them that I keep documenting the daily observations I have made of Mike and how he is doing. That way the doctor can see any patterns or changes since his last appointment. Butch discussed the changes we have seen in Mike's cognitive abilities. The psychiatrist wants to work with Mike's primary care doctor to get a neurological work up done.
I did some research and found that a person must show significant impairment in at least two of the core mental functions to be diagnosed with dementia. Mike is showing impairment in four out of the five. He has deficit in all areas except visual perception.
I think we are embarking on a whole new world of care for my brother. My head is spinning trying to wrap around what comes next. Right now I just want to slow down, get as much information as I can and then take each day one at a time. My goal is for Mike to continue to live in his own home with support.
One thing that may be available if he has a clear diagnosis of dementia is additional assistance through Medicare. I don't know if it would qualify him for more in home help or not but I'm sure going to find out. Even if it is just help with his medications that would save me $100.00/month. Maybe later on we might be able to get additional help.
So, life goes on as a caregiver. I learn more every day and especially just how much I love my brother. I will do everything I can to make his life as good as I can.
I did some research and found that a person must show significant impairment in at least two of the core mental functions to be diagnosed with dementia. Mike is showing impairment in four out of the five. He has deficit in all areas except visual perception.
- Memory
- Communication and language
- Ability to focus and pay attention
- Reasoning and judgment
- Visual perception
I think we are embarking on a whole new world of care for my brother. My head is spinning trying to wrap around what comes next. Right now I just want to slow down, get as much information as I can and then take each day one at a time. My goal is for Mike to continue to live in his own home with support.
One thing that may be available if he has a clear diagnosis of dementia is additional assistance through Medicare. I don't know if it would qualify him for more in home help or not but I'm sure going to find out. Even if it is just help with his medications that would save me $100.00/month. Maybe later on we might be able to get additional help.
So, life goes on as a caregiver. I learn more every day and especially just how much I love my brother. I will do everything I can to make his life as good as I can.
Wednesday, May 15, 2013
I need Room Crashers....Yard Crashers...Bath Crashers...I need a demolition derby!
Last night I was invited to a women's circle meeting. A bible study group from my church. I'm really not a very social person, don't know why but I guess it stems from being shy as a kid. I always feel awkward in group settings. But I keep telling myself I am a 63 year old woman and it is time to step out of my comfort zone from time to time.
The meeting was held at a lovely woman's condominium. A huge two story home with white marble floors. It was straight out of an HGTV design show. When I learned that the meetings rotate from one woman's home to another I was immediately intimidated. Now, don't get my wrong, I love my tiny house but folks....it is tiny! Why I barely have enough room for Ron and maybe a gold fish. And I can assure you it was not decorated by Vern Yip or the design stars. It's more early American hand-me-down.
Now, why do I know that "stuff" is of no consequence yet I'm self-conscious by the lack of it. I felt like a country bumpkin in the city for the first time. I was just in awe looking at her original paintings and silver service. She had the table laid out with fine china and sterling silver. My red walmart plastic cups and paper plates wouldn't cut it.
I did enjoy the fellowship and bible study. We discussed hate and how it kills. It was from the book of John. That when you hate your brother you are a murderer and do not have eternal life within you.
When I think about hate I think about how it kills the hater's spirit. It kills something within you and probably doesn't affect the person you are directing your hatred towards in the least. Forgiveness is key and in order to heal your heart you have to forgive. That is not the same thing as condone. I'm afraid people are unwilling to give up their hate because they do not want anyone to think that whatever transgression was done to them was OK. But the longer you hang on to hatred the more it steals from you.
The meeting was held at a lovely woman's condominium. A huge two story home with white marble floors. It was straight out of an HGTV design show. When I learned that the meetings rotate from one woman's home to another I was immediately intimidated. Now, don't get my wrong, I love my tiny house but folks....it is tiny! Why I barely have enough room for Ron and maybe a gold fish. And I can assure you it was not decorated by Vern Yip or the design stars. It's more early American hand-me-down.
Now, why do I know that "stuff" is of no consequence yet I'm self-conscious by the lack of it. I felt like a country bumpkin in the city for the first time. I was just in awe looking at her original paintings and silver service. She had the table laid out with fine china and sterling silver. My red walmart plastic cups and paper plates wouldn't cut it.
I did enjoy the fellowship and bible study. We discussed hate and how it kills. It was from the book of John. That when you hate your brother you are a murderer and do not have eternal life within you.
When I think about hate I think about how it kills the hater's spirit. It kills something within you and probably doesn't affect the person you are directing your hatred towards in the least. Forgiveness is key and in order to heal your heart you have to forgive. That is not the same thing as condone. I'm afraid people are unwilling to give up their hate because they do not want anyone to think that whatever transgression was done to them was OK. But the longer you hang on to hatred the more it steals from you.
Tuesday, May 14, 2013
What's in the future?
As my brother's cognitive abilities decline, for reasons unknown to us, I am being forced to think about what comes next. My first thought was to try and find out just what is causing the decline in the first place. I've read everything I can about psychotic episodes and one article really rang a bell. It said that the more episodes a person has and the increased severity can lead to brain damage. Mike has had several hospitalizations over his life time but only two psychotic breaks. The first one only lasted a few days and he fully recovered. Of course he was more than twenty years younger. The one he had in 2010 was long and debilitating and he has never recovered to his previous level of function. In fact he has been a different person altogether.
I think I kept trying to get him to be as he was before and have only recently accepted the fact that it will never happen. Every day I see him fading away a little more. He is no longer able to handle his finances or simple tasks. But he tries so hard. He will look at you with the most confused look on his face and blank eyes.
Yesterday I went over after work to get his mail and see if he needed anything. He hates being alone and wants company all the time. That's why he is constantly on the phone. He cried a little over his friend Lloyd but I reminded him of all the great friends he made through Lloyd. I told him the best way to honor his friend is to live the happiest, most joyful life that he can.
He asked me why his memory is so bad and I didn't have a good answer for him. I just said that it just happens sometimes to people as they age. I told him he is lucky because he has friends and family that are there to help him. I told him my goal is for him to live independently for as long as possible. I did say that I can't guarantee it will be forever though. That my main concern has to be his safety.
In the back of my mind I have thought the next phase would be for him to live with Ron and I. But when I really think about that my greatest concern would be that he might outlive me or that my health might prevent me from being able to take care of him. It might be more compassionate to transition him to a nursing home rather than my home. That way if anything happened to me he would already be settled and wouldn't have to go through such a trauma twice and I wouldn't be here to help him.
I don't know what is ahead or whether we will be able to find a home that would even take him. I almost believe he would have to be so far gone that he wouldn't realize where he was before we'd be able to get him to go.
We have a lot of questions for his psychiatrist Thursday. I wish someone would do some testing to determine if he has brain damage or is this dementia or what. Information is power and I could use a little power about now.
I think I kept trying to get him to be as he was before and have only recently accepted the fact that it will never happen. Every day I see him fading away a little more. He is no longer able to handle his finances or simple tasks. But he tries so hard. He will look at you with the most confused look on his face and blank eyes.
Yesterday I went over after work to get his mail and see if he needed anything. He hates being alone and wants company all the time. That's why he is constantly on the phone. He cried a little over his friend Lloyd but I reminded him of all the great friends he made through Lloyd. I told him the best way to honor his friend is to live the happiest, most joyful life that he can.
He asked me why his memory is so bad and I didn't have a good answer for him. I just said that it just happens sometimes to people as they age. I told him he is lucky because he has friends and family that are there to help him. I told him my goal is for him to live independently for as long as possible. I did say that I can't guarantee it will be forever though. That my main concern has to be his safety.
In the back of my mind I have thought the next phase would be for him to live with Ron and I. But when I really think about that my greatest concern would be that he might outlive me or that my health might prevent me from being able to take care of him. It might be more compassionate to transition him to a nursing home rather than my home. That way if anything happened to me he would already be settled and wouldn't have to go through such a trauma twice and I wouldn't be here to help him.
I don't know what is ahead or whether we will be able to find a home that would even take him. I almost believe he would have to be so far gone that he wouldn't realize where he was before we'd be able to get him to go.
We have a lot of questions for his psychiatrist Thursday. I wish someone would do some testing to determine if he has brain damage or is this dementia or what. Information is power and I could use a little power about now.
Monday, May 13, 2013
Final Class
Our Sunday school class ended yesterday and a new class will not start until the fall. The last two classes were on the stages of grief. We first covered the grief we experience when we lose someone. Yesterday's class was on the grief of the dying person himself.
It was interesting to hear how important it is to listen to the needs of the dying person. Someone in class had lost their wife about 6 months ago and talked about the strain it was on his wife that her adult children were unable to accept her inevitable death. They remained in severe denial throughout her 3 month illness imposing their will upon her. They put all their hope and faith into homeopathic treatments and refused to acknowledge their mother was dying. Her husband said that his wife went along with their denial for their sake but longed to be able to talk to them about what was happening and tell them the things she wanted them to know.
I thought that was very interesting. They discussed how it is ideal if the dying and the loved ones are able to reach the same stage together. But that no matter what you should listen to the needs of the dying person. Even if you are not at the same place.
I guess everyone is different and our greatest hope is that when that time comes whether our own or a loved one....that the passing will be peaceful and without pain. That's about the best you could hope for.
I kept watching Ron and wondering if this was a difficult topic for him. He said that it was very interesting and that he was really OK with whatever comes. He said he isn't anxious about his surgery only anxious to get the results. I think he is as prepared as anyone could be under the circumstances. He said he is tired of the "not knowing" whether his kidney cancer has actually metastasized to his lung. If it has it will be a game changer but we will deal with it. If it turns out to be benign that will give us more hope than we've had in 4 years. He says he is ready to know one way or the other.
Yesterday was the children's service and it was so precious complete with a cheer for moms!
After church we spent the remainder of the day with my daughters. We had a wonderful cookout and Mike had the best time of all.
It was interesting to hear how important it is to listen to the needs of the dying person. Someone in class had lost their wife about 6 months ago and talked about the strain it was on his wife that her adult children were unable to accept her inevitable death. They remained in severe denial throughout her 3 month illness imposing their will upon her. They put all their hope and faith into homeopathic treatments and refused to acknowledge their mother was dying. Her husband said that his wife went along with their denial for their sake but longed to be able to talk to them about what was happening and tell them the things she wanted them to know.
I thought that was very interesting. They discussed how it is ideal if the dying and the loved ones are able to reach the same stage together. But that no matter what you should listen to the needs of the dying person. Even if you are not at the same place.
I guess everyone is different and our greatest hope is that when that time comes whether our own or a loved one....that the passing will be peaceful and without pain. That's about the best you could hope for.
I kept watching Ron and wondering if this was a difficult topic for him. He said that it was very interesting and that he was really OK with whatever comes. He said he isn't anxious about his surgery only anxious to get the results. I think he is as prepared as anyone could be under the circumstances. He said he is tired of the "not knowing" whether his kidney cancer has actually metastasized to his lung. If it has it will be a game changer but we will deal with it. If it turns out to be benign that will give us more hope than we've had in 4 years. He says he is ready to know one way or the other.
Yesterday was the children's service and it was so precious complete with a cheer for moms!
After church we spent the remainder of the day with my daughters. We had a wonderful cookout and Mike had the best time of all.
Friday, May 10, 2013
Buying Time
My brother has no sense of money or time. He doesn't understand abstract concepts and if he has an appointment on Thursday, May 16th....all he understands is Thursday! He's been telling me his psychiatric appointment is on Thursday for the past two months. I have to explain NOT this Thursday but Thursday, May 16th. He obsesses over and over about it and calls the doctor's office daily. I've used calendars and marked them but it doesn't mean a thing to him. All he knows is THURSDAY!
The money issue is harder. I'm not sure how to creatively manage it. I have control over his money but he also needs to have some independence and freedom. I'm thinking I will start giving him just enough money for each day. I'd like to give it to him weekly (because it is just more convenient for me) but I afraid he would spend it all in one day.
He was able to manage pretty well until the last two months. His cognitive decline has been rapidly progressing and he spent $1,300 last month just on food but we don't know exactly on what. Going to Subway, Homeland grocery and Walmart are just daily activities for him but he's buying all kinds of weird things. So we took the debit card away. Now I have to come up with some clever way for him to have access to a little money at a time. I wish I could give it to him weekly but he would spend it all in one day.
We are going to arrange to have all his mail sent to me so he won't even see a bill. He can't remember where he puts his mail and we keep finding it in the strangest places. I know he will not be able to live alone much longer but right now he would fight us if we tried to change that. I'm just trying to buy time.
We are looking at the possibility of building a small guest house in our backyard. If the city will approve it that is. They were impossible to deal with when we enlarged our driveway so I can only imagine how picky they would be about a guest house.
We don't want to live in the same house with Mike if we can help it because he can consume you. He consumed our parents and I just don't want that to happen to me. He already is a full-time job without living with him.
The money issue is harder. I'm not sure how to creatively manage it. I have control over his money but he also needs to have some independence and freedom. I'm thinking I will start giving him just enough money for each day. I'd like to give it to him weekly (because it is just more convenient for me) but I afraid he would spend it all in one day.
He was able to manage pretty well until the last two months. His cognitive decline has been rapidly progressing and he spent $1,300 last month just on food but we don't know exactly on what. Going to Subway, Homeland grocery and Walmart are just daily activities for him but he's buying all kinds of weird things. So we took the debit card away. Now I have to come up with some clever way for him to have access to a little money at a time. I wish I could give it to him weekly but he would spend it all in one day.
We are going to arrange to have all his mail sent to me so he won't even see a bill. He can't remember where he puts his mail and we keep finding it in the strangest places. I know he will not be able to live alone much longer but right now he would fight us if we tried to change that. I'm just trying to buy time.
We are looking at the possibility of building a small guest house in our backyard. If the city will approve it that is. They were impossible to deal with when we enlarged our driveway so I can only imagine how picky they would be about a guest house.
We don't want to live in the same house with Mike if we can help it because he can consume you. He consumed our parents and I just don't want that to happen to me. He already is a full-time job without living with him.
Thursday, May 9, 2013
nothing like a spare
Ron got his tooth out and man is his jaw swollen.....took the wrinkles right out. An interesting thing about this tooth...he has another one under it that couldn't come through. The dentist is interested to see if it will now that the other tooth has been pulled. I'm just glad he got it out and is on an antibiotic. We have a good 3 weeks to get the infection cleared up.
The shirts I got him for our anniversary did a great job of covering his Budha belly but they were too big across the shoulders. He hasn't decided whether to keep them or not.
I also got him (us) a new patio umbrella. I thought it would be a nice shady spot to recuperate after his surgery. I didn't want everyone to think I only gave him cotton balls......that would just be mean.
If I can get the house back in order I think we will be ready for his surgery. I just have to square things away at work and then I can devote my time to Ron. I have plenty of meals in the freezer so we should be good to go.
Thinking about retirement is new for me. I've been working since I was sixteen so it's pretty much what I know. Does everyone feel a little anxious when they are preparing to retire? All I hear is the gloom and doom projected for social security and medicare just at the time I'm thinking about drawing both. I worry about my state retirement and how solvent it will remain. I am constantly doing the math and wondering if it is feasible to retire. I took a pretty good hit to my retirement account during the recession but it has recovered somewhat. I'm just scared it will happen again. I guess it is just the vulnerability I am feeling. Sixty-six seems to be the age when others have left the hospital. That seems to be the magic number around here and I've seen pressure put on some individuals to retire. I'll be 64 in July so that magic age of 66 isn't that far away.
Is this fear normal?
The shirts I got him for our anniversary did a great job of covering his Budha belly but they were too big across the shoulders. He hasn't decided whether to keep them or not.
I also got him (us) a new patio umbrella. I thought it would be a nice shady spot to recuperate after his surgery. I didn't want everyone to think I only gave him cotton balls......that would just be mean.
If I can get the house back in order I think we will be ready for his surgery. I just have to square things away at work and then I can devote my time to Ron. I have plenty of meals in the freezer so we should be good to go.
Thinking about retirement is new for me. I've been working since I was sixteen so it's pretty much what I know. Does everyone feel a little anxious when they are preparing to retire? All I hear is the gloom and doom projected for social security and medicare just at the time I'm thinking about drawing both. I worry about my state retirement and how solvent it will remain. I am constantly doing the math and wondering if it is feasible to retire. I took a pretty good hit to my retirement account during the recession but it has recovered somewhat. I'm just scared it will happen again. I guess it is just the vulnerability I am feeling. Sixty-six seems to be the age when others have left the hospital. That seems to be the magic number around here and I've seen pressure put on some individuals to retire. I'll be 64 in July so that magic age of 66 isn't that far away.
Is this fear normal?
Wednesday, May 8, 2013
The fabric of our lives.................
Mike's good friend and neighbor Lloyd died this morning. Mike had such a tough day yesterday grieving for his friend but he seemed OK this morning. He was going to his Silver Sneakers class today (that Lloyd introduced him to) and tell the other members of Lloyd's passing. I told him to have fun in Lloyd's honor with joy in his heart!
Ron woke up with his jaw swollen around his tooth. Thank goodness he's been on the antibiotic for a week. He's on his way to the dentist to have it extracted. He still won't admit I was right.....stubborn man!
We were both so tired last night we didn't go out for our anniversary. Instead we built a fire in the chiminea and ate dinner outside. It was very relaxing and we enjoyed just staying home. He gave me a box of Q-tips in response to my cotton balls.....he made me a card that said I was the fabric of his life...Now I have to see what year three will be. We've done paper and cotton so far.
My niece is doing well and staying very positive. I'm proud of her hard work. As Dr. Phil says......this has been a changing day in her life.
So.....hopefully today will be a peaceful reprieve from recent events. Mike is willing to let me handle all of his finances from now on and Ron will be helping me. He understands that we just want him to be safe and happy!
Ron woke up with his jaw swollen around his tooth. Thank goodness he's been on the antibiotic for a week. He's on his way to the dentist to have it extracted. He still won't admit I was right.....stubborn man!
We were both so tired last night we didn't go out for our anniversary. Instead we built a fire in the chiminea and ate dinner outside. It was very relaxing and we enjoyed just staying home. He gave me a box of Q-tips in response to my cotton balls.....he made me a card that said I was the fabric of his life...Now I have to see what year three will be. We've done paper and cotton so far.
My niece is doing well and staying very positive. I'm proud of her hard work. As Dr. Phil says......this has been a changing day in her life.
So.....hopefully today will be a peaceful reprieve from recent events. Mike is willing to let me handle all of his finances from now on and Ron will be helping me. He understands that we just want him to be safe and happy!
Tuesday, May 7, 2013
The Touch The Feel of Cotton!
Happy Anniversary to my best friend and husband! It has been two wonderful years and I can't believe I have been so blessed. I hope you know why I gave you a jar of cotton balls this morning. The 2nd anniversary is, you guessed it, cotton! I could have given you a shirt but I thought the cotton balls got right to the point. Plus, I needed some anyway. Of course this isn't the only surprise awaiting you today but you will just have to be patient and let the day unfold.
I had to scramble yesterday to make some anniversary plans as we had expected Ron would be in the hospital today recovering from surgery. Since it was postponed I had to get it in gear. I will not divulge my plans just in case he reads my post before I have a chance to surprise him. Thank goodness my Board meeting was last night and I'm going to be home this evening.
Mother's day is coming up and it is always bittersweet since my mother's death. But, I hope to spend time with my girls and I'm glad Ron will be able to be with us as well.
Many of my treasured gifts still hang on the wall in my bedroom. I have a wooden plaque hanging in my room with the following saying burned into the wood:
All these mother’s day gifts are more precious to me than gold!
I had to scramble yesterday to make some anniversary plans as we had expected Ron would be in the hospital today recovering from surgery. Since it was postponed I had to get it in gear. I will not divulge my plans just in case he reads my post before I have a chance to surprise him. Thank goodness my Board meeting was last night and I'm going to be home this evening.
Mother's day is coming up and it is always bittersweet since my mother's death. But, I hope to spend time with my girls and I'm glad Ron will be able to be with us as well.
I have a cedar chest I keep in the spare bedroom. It doesn’t contain heirloom quilts or
treasured family keepsakes. Every
Mother’s Day I like to sit on the floor and open the chest and carefully exam
its contents. Inside are all
the special mother's day gifts I have received from my daughters through the years.
There are handmade gifts from school. One of my favorites is a construction paper
cookbook with recipes from all the children in my daughters’ kindergarten
class. Their submission to the cookbook was a recipe they titled, My Mom’s
Stew! Of course they left out several
key ingredients but the jest of the recipe was there.
I have another book titled, “My Family Having Fun”. In this book they told a story in drawings
about what their family did to have fun.
One picture depicted myself dressed in high heels wearing cross earrings
and a cross necklace and bracelet standing next to themselves (identical twins)
only one of them had red hair and the other blond hair. With us was a dog and a cat neither of which
we had at the time. In this picture we
were just standing in front of a house.
In another picture we were on an escalator “shopping” and the last
picture and my personal favorite, we were all in the bathtub (dog and cat
included) in a sea of bubbles waving American flags. (a typical clean, patriotic, animal loving family having fun)
I also received the various store purchased or garage sale
gifts such as the snowman earrings, the tennis shoe purse and the broken milk
jug clock that had a dangling minute and second hand.
One special gift received from my daughter Julie was a
wrought iron sequined butterfly necklace she purchased at a garage sale. Many of the sequins were missing but she was
so proud of her purchase. Every morning
she would watch me get ready for work anxiously waiting for me to put on her
necklace. One morning she asked if I
would be disappointed to learn it was costume jewelry. I wasn’t!
The only problem with the necklace other than the missing sequins was
the fact that it weighed a ton. It was
more like a gate ornament for South Fork ranch. But, I hung it around my neck and waited until I was at work to
remove the necklace and hang it on my rear view mirror. One day after work I got in my car to find
the necklace had actually pulled the rear view mirror off the windshield!
Many of my treasured gifts still hang on the wall in my bedroom. I have a wooden plaque hanging in my room with the following saying burned into the wood:
I love you in Big
ways
I love you in Small
ways
I love you this
minute
And I’ll love you
Always.
I love to read it just before I fall asleep at night.
On another wall in my room hang two plaster hand prints, one
of each of the girls when they were four years old. They made them when they were attending a mother’s day out
program and they are hanging in the same place I hung them some 38 years ago.
All these mother’s day gifts are more precious to me than gold!
Monday, May 6, 2013
One of those Days!
Mike's impulsiveness has made today just "one of those days". My patience is wearing thin from all the phone calls but mostly because he does the opposite of what I tell him to do.
There was an issue with one of his prescriptions that I told him his nurse would handle. I specifically told him to leave it alone and let us take care of the problem. But he calls the pharmacy 10 times instead and they are getting tired of dealing with him. It makes it hard for me to get his meds and to keep them straight.
He calls the nurse who fills his med planner just to tell her he's not worried about his meds. Thank goodness she is a personal friend or she would refuse to deal with him.
He knows I'm frustrated because I'm sure he hears it in the tone of my voice. Sometimes I feel I have to get firmer with him in order to get him to stop calling me every 10 minutes. I know he can't help his behavior but I really need him to try!
There was an issue with one of his prescriptions that I told him his nurse would handle. I specifically told him to leave it alone and let us take care of the problem. But he calls the pharmacy 10 times instead and they are getting tired of dealing with him. It makes it hard for me to get his meds and to keep them straight.
He calls the nurse who fills his med planner just to tell her he's not worried about his meds. Thank goodness she is a personal friend or she would refuse to deal with him.
He knows I'm frustrated because I'm sure he hears it in the tone of my voice. Sometimes I feel I have to get firmer with him in order to get him to stop calling me every 10 minutes. I know he can't help his behavior but I really need him to try!
As the brain churns
As my brother's cognitive abilities decline it becomes increasingly evident that Ron and I will have to step in more and more. For the most part Mike has been handling his own finances with Ron and I checking in and making sure he has enough money. But lately we are noticing he is more and more confused about how much he has and how much he is spending. (The extra foot long sandwich each day for the refrigerator for example).One idea we are considering is to have all his bills sent to us and then we will pay them from his account.
He likes to use a credit card for all his food purchases but we are thinking about putting a cap on the limit. We've tried to avoid getting legal guardianship of Mike because of all the red tape you have to jump through. We had legal guardianship of my mother and the majority of her estate went to pay the lawyer. We want to avoid that if possible. As long as we have power of attorney and Mike is cooperative I think we can manage without that formality.
We want him to remain as independent as possible but at the same time we want to protect him from people who would take advantage of his disability. Sadly there are many. One of his neighbors was able to get nearly $7,000 from him to paint the house inside and out. (This was before our mother died) The money is gone but the house was never painted. Ended up the guy was a drug addict that took the money and split.
Mike is so impulsive that he does things first and then asks if it was alright after the fact. I guess I have no choice but to get even more involved than I have been. I guess I'm just feeling overwhelmed. I wish I could just enjoy him and not be responsible for him....if that makes sense.
He likes to use a credit card for all his food purchases but we are thinking about putting a cap on the limit. We've tried to avoid getting legal guardianship of Mike because of all the red tape you have to jump through. We had legal guardianship of my mother and the majority of her estate went to pay the lawyer. We want to avoid that if possible. As long as we have power of attorney and Mike is cooperative I think we can manage without that formality.
We want him to remain as independent as possible but at the same time we want to protect him from people who would take advantage of his disability. Sadly there are many. One of his neighbors was able to get nearly $7,000 from him to paint the house inside and out. (This was before our mother died) The money is gone but the house was never painted. Ended up the guy was a drug addict that took the money and split.
Mike is so impulsive that he does things first and then asks if it was alright after the fact. I guess I have no choice but to get even more involved than I have been. I guess I'm just feeling overwhelmed. I wish I could just enjoy him and not be responsible for him....if that makes sense.
Friday, May 3, 2013
Peace Treaty Signed
Things are calm again at our house. Ron got a prescription for an antibiotic yesterday for 30 days and he'll get the tooth pulled next Wednesday. He's forgiven me for interfering but he still thinks everyone made a big deal out of nothing, even his thoracic surgeon. That's OK....he doesn't have to admit I was right he just has to get through all this and be OK. That's all I want!
I woke up this morning thinking he would be going in to the operating room right now if the surgery hadn't been canceled. It felt a little surreal since I've been preparing for today for months. This whole battle with cancer has been surreal. We hurry up and wait....wait for doctor's appointments, wait for test results, wait for consultations, then wait some more for everyone to get on the same page and develop a plan. Ron and I are just passengers on a train. We know we are heading down the track but we have no idea where we are going or any control over where or when we get off. So, we just settle in and try to enjoy the scenery (our lives) along the way.
I had everything on track for work for the next few weeks but now I have to start all over. I'm looking at my schedule in June now and trying to figure out how to cover everything. Oh well, it will all work out in the end. In fact, I think June is actually a lighter month than May so it may even be easier.
My niece was discharged from the hospital and started her AA program last night. I haven't seen her but I've talked to her on the phone. She sounded good but she has a lot of work ahead of her and I'm praying she will focus on getting well. Alcoholism isn't something I've ever dealt with..... I don't know exactly how to support her but I'm trying.
I woke up this morning thinking he would be going in to the operating room right now if the surgery hadn't been canceled. It felt a little surreal since I've been preparing for today for months. This whole battle with cancer has been surreal. We hurry up and wait....wait for doctor's appointments, wait for test results, wait for consultations, then wait some more for everyone to get on the same page and develop a plan. Ron and I are just passengers on a train. We know we are heading down the track but we have no idea where we are going or any control over where or when we get off. So, we just settle in and try to enjoy the scenery (our lives) along the way.
I had everything on track for work for the next few weeks but now I have to start all over. I'm looking at my schedule in June now and trying to figure out how to cover everything. Oh well, it will all work out in the end. In fact, I think June is actually a lighter month than May so it may even be easier.
My niece was discharged from the hospital and started her AA program last night. I haven't seen her but I've talked to her on the phone. She sounded good but she has a lot of work ahead of her and I'm praying she will focus on getting well. Alcoholism isn't something I've ever dealt with..... I don't know exactly how to support her but I'm trying.
Thursday, May 2, 2013
No surgery Friday
Well, surgery has been re-scheduled. It seems that my sweet, dear, husband had kept the fact that he has an abscessed tooth a secret from his doctor and his wife.
Ron had gone to the dentist about two months ago about the tooth and he came home and told me that the tooth was dead but they said it was up to him if he wanted to pull it. At the time I thought that didn't sound quite right but I didn't question him about it.
Well, it seems that the dentist wanted to pull the tooth and Mr. Ron just didn't want to because the tooth wasn't hurting. He didn't even take an antibiotic. So, it has continued to get worse. Tuesday night I happened to remember the tooth and I asked him if it had cleared up. He said no that it still had an abscess and was draining. He just poohed it off and said it was no big deal. I told him to call the surgeon and tell him about it but he called the dentist instead who wasn't in the office.
I called the surgeon yesterday and he said no way was he having surgery Friday....Ron has to be on an antibiotic at least 3 weeks before he will be able to have surgery.
Well, I was in the dog house last night. Ron was not happy that I told his surgeon and thinks it was just no big deal. I told him I only gave the doctor the information it was his decision to re-schedule the surgery. There was no way I was going to let him go to the hospital knowing he hadn't told his doctor about the infection.
I guess to some I overstepped some code by telling his doctor about the infection but if I hadn't and something awful happened I wouldn't have forgiven myself. I just told Ron I'd rather have him alive and mad at me than dead.
Ron had gone to the dentist about two months ago about the tooth and he came home and told me that the tooth was dead but they said it was up to him if he wanted to pull it. At the time I thought that didn't sound quite right but I didn't question him about it.
Well, it seems that the dentist wanted to pull the tooth and Mr. Ron just didn't want to because the tooth wasn't hurting. He didn't even take an antibiotic. So, it has continued to get worse. Tuesday night I happened to remember the tooth and I asked him if it had cleared up. He said no that it still had an abscess and was draining. He just poohed it off and said it was no big deal. I told him to call the surgeon and tell him about it but he called the dentist instead who wasn't in the office.
I called the surgeon yesterday and he said no way was he having surgery Friday....Ron has to be on an antibiotic at least 3 weeks before he will be able to have surgery.
Well, I was in the dog house last night. Ron was not happy that I told his surgeon and thinks it was just no big deal. I told him I only gave the doctor the information it was his decision to re-schedule the surgery. There was no way I was going to let him go to the hospital knowing he hadn't told his doctor about the infection.
I guess to some I overstepped some code by telling his doctor about the infection but if I hadn't and something awful happened I wouldn't have forgiven myself. I just told Ron I'd rather have him alive and mad at me than dead.
Wednesday, May 1, 2013
visitors
I was 39 years old when my father died. He and my mother were the most important people in the world to me along with my children. My dad was the patriarch and the humor in our family. A world class storyteller and a wit as sharp as a knife. Growing up and just imagining losing him was unthinkable. I fully expected his death to be the end of my life as well. Up until his death I had never lost anyone close to me so I had no idea what to expect.
My dad's death was sudden as far as deaths go. He had never been seriously ill or in the hospital until then. But one day he started having a problem with his bowel and went to the ER. His colon was completed blocked by a tumor. There was a question as to whether he would even survive the surgery but he did. They removed 90% of his colon but he survived only to succumb to an asthma attack 7 days later.
The shocking thing about his death for me was not what I expected. I had always anticipated I would crumble under the grief but that is not what I experienced. From the moment he died I never felt he was gone. It's hard to explain but I felt him with me as if I could reach out and touch him.
At night I would feel him sit on my bed. I didn't recognize what it was at first...thinking the dog had jumped on the bed only to turn on the light and see nothing there. Then I recalled how my dad would always sit on my bed when I was a little girl and listen to my prayers. His weight would always cause me to roll toward him resulting in a burst of giggles. For almost two years this became a routine experience. I'd turn off the bedside lamp after going to bed and almost immediately feel the bed sink as if someone heavier had sat on the edge. It was the most comforting feeling.... one I didn't share with anyone for almost two years. Then one evening out of no where my mother told me "You know your daddy sits on my bed at night." I was just shocked. Then I shared my experience with her and we both just knew it was true.
Over time he has stopped coming. The last time it happened was the night after my mother died. I just knew that he was telling me they were together.
Well, last Sunday in our Sunday school class we were discussing the stages of grief. The ones everyone are familiar with such as denial, anger, acceptance, etc. Then we were asked to share experiences of loss. A woman in our class spoke about losing her daughter when she was in her late twenties. She said that every day while her daughter was sick they would lay together and nap in the afternoon. The woman described how after her daughter died she would go to her room and lay down on the bed as she had done before her death. She described how she would feel the weight of her daughter behind her as the bed sank just a little and feel her body curl up behind her. She said she would sleep so peacefully feeling her daughter was still with her and how it eased her grief.
Her story brought back my own experience and how my dad's continued presence comforted me through those days.
My dad's death was sudden as far as deaths go. He had never been seriously ill or in the hospital until then. But one day he started having a problem with his bowel and went to the ER. His colon was completed blocked by a tumor. There was a question as to whether he would even survive the surgery but he did. They removed 90% of his colon but he survived only to succumb to an asthma attack 7 days later.
The shocking thing about his death for me was not what I expected. I had always anticipated I would crumble under the grief but that is not what I experienced. From the moment he died I never felt he was gone. It's hard to explain but I felt him with me as if I could reach out and touch him.
At night I would feel him sit on my bed. I didn't recognize what it was at first...thinking the dog had jumped on the bed only to turn on the light and see nothing there. Then I recalled how my dad would always sit on my bed when I was a little girl and listen to my prayers. His weight would always cause me to roll toward him resulting in a burst of giggles. For almost two years this became a routine experience. I'd turn off the bedside lamp after going to bed and almost immediately feel the bed sink as if someone heavier had sat on the edge. It was the most comforting feeling.... one I didn't share with anyone for almost two years. Then one evening out of no where my mother told me "You know your daddy sits on my bed at night." I was just shocked. Then I shared my experience with her and we both just knew it was true.
Over time he has stopped coming. The last time it happened was the night after my mother died. I just knew that he was telling me they were together.
Well, last Sunday in our Sunday school class we were discussing the stages of grief. The ones everyone are familiar with such as denial, anger, acceptance, etc. Then we were asked to share experiences of loss. A woman in our class spoke about losing her daughter when she was in her late twenties. She said that every day while her daughter was sick they would lay together and nap in the afternoon. The woman described how after her daughter died she would go to her room and lay down on the bed as she had done before her death. She described how she would feel the weight of her daughter behind her as the bed sank just a little and feel her body curl up behind her. She said she would sleep so peacefully feeling her daughter was still with her and how it eased her grief.
Her story brought back my own experience and how my dad's continued presence comforted me through those days.
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