If you have ever had the hiccups you have found that everybody has a sure fire way to stop them. I have never found anything but time to be effective. So usually I just decide to ignore them and eventually I realize that I can't remember when was the last time I hiccuped. The benefit to this is even while I am suffering from the hiccups I don't allow it to take over my life to the extent that I am stuck and not moving forward. This approach seems to work well for me when dealing with what are admittedly life alterating circumstances. Deal with what needs to be dealt with, ignore what can't and move on. I once tried to just lie there and check out but I got bored after about 5 mins. I'm surprised it lasted that long, I must have been trying really hard to check out. That being said I do know and understand how one can be paralyzed by life and the crap we can be faced with, there have been times when I was overwhelmed and close to that edge.
So if you haven't figured it out by now my husband Bob has a terminal illness and we are dealing with what we can; As in managing his symptoms and learning how to cope with them, and not dwelling on what we can't change; As in his impending death. However there are always people who know an alternative treatment that the Doctors won't tell you about that saved Uncle So & So's life; There are also people who will recommend that you examine your spiritual life and get on board with faith, repentance, etc, etc....
First of all let me say this; Yes there are instances where repenting and faith are ingredients to healing. I do believe that even today there are miraculous healing and that God also works miracles with in the medical system, cutting edge treatments and so on. I also believe that sometimes God says "No" that he has a purpose in what he has allowed to happen in your life, regardless of whether you know what that is or not. Sometimes we never know or understand, but I do maintain that we can be assured that we are working in sync with his plan and purposes and trust Him in our circumstances.
I'm addressing this issue because I have recently been approached by some who want me to try one thing or another and Bob has been accused of not having the right amount of faith or of having some sin in his life.
Bob and I have tremendous faith. It takes alot of faith to endure hardship, more so than to experience healing. I hold as an example my own dear Jesus Christ. In the Garden; He asked the Father if this cup could be taken from him. The answer was - No. Now tell me He didn't have enough faith or that he had some sin in his life that he needed to repent of! The purposes of God in this instance was to wipe away our sins and the only way was for Christ to be the sacrifice for our sins. When I realized that He knew what it was like to be told no, that one had to continue in this suffering; I connected with my Savior more at that moment then in any other in my life. So without going into a lot of detail about how Bob and I got to the point where we knew that we were not lacking in faith, We can say with certainty that we know there have been times when we were told "NO". That God allowed things to occur in our lives that we were not "rescued " from and that we will always be able to stand up and be a testimony and witness to God's goodness. So anyone who would claim that our spiritual life is lacking in some way that keeps us in this trial, they are lacking in understanding of how many different ways God works in peoples lives, Just read Hebrews 11 known as the "Hall of Faith" and specifically verses 35-39.
Now as for the various treatments that are recommended to us. We are always willing to, funding available, to entertain the possibility of receiving a treatment that may help with our illness. Before Bob was diagnosed with MSA and we thought he had Parkinson's we were willing to try DBS surgery. There was a valid technical reasoning and good science as to why it worked. there were also viable examples of successes with many people. Even some Stem cell treatments that were showing good results (and again good science). We did not entertain anything that had to do with embryonic stem cells for two reason, one was a moral aversion to killing babies, as far as we are concerned embryos are babies, and there other reason; It would appear that there are better more successful types of stem cells including harvesting them from your own body that actually do the job better.
When I was trying to have a baby we did try some unique treatments that did not work for us. Sometimes these things work and sometimes even fairly solid treatments don't. I had a friend who tried Invitro Fertilization to no success and unfortunately I do believe that because of the impact of this treatment on other parts of her body a dormant cancer was accelerated filling her with it and she lost her life. The body is always in a delicate balance and we never know how what we do to it will affect it, so Bob and I are always cautious. We have our own stories of how this balance can be affected. Bob was taking a new medication and the next thing we know he is passing out and having what they call Hypo tension. He had blood pressures of 45/34, essentially he was having no blood flow. Fortunately we discontinued this med and he rarely has this happen. It does still occur occasionally because it is part of the MSA but not 3 & 4 times a day anymore.
Earlier I mention Good Science. What I mean by this is there can be laid out a good argument for a treatment. For instance in Parkinson's disease we know that the patient has lost the cells that make up Dopamine. When a patient has enough Dopamine they can function really well in spite of their disease. The problem is our ability to make sure enough dopamine gets to the Brain as it tends to leak into the blood system as it travels from the mouth to the brain. After awhile they have to increase the levels of meds (The body is always in a constant state of change) until you can't take enough meds to help get the Dopamine to it's destination. That's when DBS takes over. It's a more drastic and yet more powerful way to get Dopamine directly to the brain, even so the need for meds will begin again and slowly increase, and so it goes. The one thing I want you to get from this is We know what is lacking and we know of a way to get it for a period of time until the body says enough is enough. Good Science. however there are treatments that have been proposed that claims success but have no reasonable explaination of why it would help. Say laying in a Hyperbolic chamber. I have yet to be told why this would help, what is it doing to him that would help with the lack of dopamine cells. There have not been reliable sources or claims of improvement. I would call this a fad and the claims of a cure to be unreliable. Therefore We would not entertain the notion of participating. Not Good Science.
So where does all of this put Bob and I? Here's the deal they know what Bob has by observing and listing his symptoms. They do not know what makes MSA happen., therefore there is not currently a cure. Parkinson's is closer to a cure because they know what is wrong with the patient's brain and they are working towards fixing that. So we have a terminal disease and until we are told what is broke nothing regardless of it's claim is going to be considered a "Fix". Especially since we are concerned about the Balance in the Body. The cure could be worse than the illness in our case. We know that Bob's life will be much shorter and I have no wish to make it any shorter than it already is. What we are doing is treating each symptom as it progresses with treatments that are known to be able to deal with each symptom. That means giving the automatic systems that begin to fail help in doing their jobs, I won't go into gross details.
As for our faith and our walk with God. We are good. We know that God is providing for us, he has blessed us with so many gifts that speak to our needs. A home, a job, the ability to be with each other, so many many blessings. We have drawn near to God and asked him to enlighten us about our situation and he has answered us. One day he gave Bob the scripture in John 9:1-3
"Now, as Jesus passed by, he saw a man who was blind from birth. And His disciples asked Him, saying 'Rabbi, who sinned, this man or his parents, that he was born blind?' Jesus answered, 'Neither this man nor his parents sinned, but that the works of God should be revealed in him."'."
Bob asked God Answered, that's enough for us. We are also aware that the story of our lives has been shared with people we don't know or have contact with as an encouragement, that's enough for us. Because God asks it of us we will testify to His goodness in our lives and our love for Him.
On an extremely personal note, ever since Bob was diagnosed with Parkinson's Disease, I have felt the Holy Spirit well up in me and walk with me on this path that I must tread. He has given me warnings and encouragements regarding what Bob and I are facing. As time goes on those whispers in my heart have proved to be right and true. I believe He has been preparing me to be the wife Bob needs me to be so that I can overcome the overwhelming responsibility of Bob's care and to make good decisions. To not waste my time trying to cure the Hiccups but the deal with the things I can and make the best of what I can't and to not be paralyzed and stuck in the trenches of wasted energy and hopeless endeavors.
Saturday, July 23, 2011
Thursday, May 19, 2011
Provisions in the Desert Place
In the previous post I mentioned that God had provided our current living situation and promised that I would tell this story. It shows so very clearly that God is loyal and devoted to his people, even when we are in the desert place we can know that he is there and taking care of us.
Several years ago Bob became deathly ill. He was having horrific headaches that were triggered by simply moving or standing up. This was the begining of a journey that took about two years before we found out that the cause was a rare tumor in his adrenal gland. We had it removed and thought that when he recovered we could start over and go back to the original plan of deliviering boats and becoming charter boat captains.
During the time that he was struggling with this unknown fiend I was going through a very trying time at my job, lost my position and was struggling to make it as a Real Estate Agent. Just about the time that we had discovered what was wrong with Bob and what the solution was we had gone through all of our savings and were at the point where we never knew when the next check was going to come. Time and time again I would close escrow, recieve a check, pay the bills and then sit down and say to God "What next? I don't even have a client in the pipeline". One particular time the phone rang immediately after that prayer and I sold another house and the cycle started over again. So I was learning to lean on God and trust him.
We had reached the point that we had to go to Seattle for Bob's surgery and because of the time required to facilitate this I was unable to tend to any clients leaving a huge gap in our finances. For several months I had been working two jobs and scraping by, I noticed however that our grocery bill was not eating up as much of the budget as it normally did and I wondered about it. When I finally figured out how we were able to afford to eat I was staggered by God's provision and the precious people who he had brought into our lives.
God's people, they are so precious to me. I had been attending a ladies bible study and become good friends with the leader. She in turn became friends with Bob and was having him work on her computer. He had a medication that helped him avoid the headaches but he was still fragile. Since she was familiar with taking care of fragile people I trusted her when she would pick him up and bring him to her house and have him there all day. She would call me at work and tell me she had him and if I came by to pick him up later would I like to stay for dinner? For several months I enjoyed the company of Leone, her husband Bob, and the widows and friends that gathered around her table nightly. That's what my epiphany was- Leone knew and she was feeding us. I found that I was only buying food for breakfast and a few dinners a week. She and God were caring for us and we had not even had to ask. They knew and they did.
So as we prepare to go to Seattle for surgery, we know that we will be returning to an empty bank account and our rent will be due. We don't even have the money for the gas to go to seattle or the hotel that I have to stay in for a week. The ladies bible study handed me a check. I had not shared my concerns- God told them.
Before we left for Seattle we recieved another gift. Leone's best friend Brigitte Janke and her son Mark owned a Mini-storage facility and were looking for a couple to be thier Resident Managers. So as we went to Seattle we knew that after Bob's recovery we would be taking over this position and moving into a new home. Bob would be the manager, Iwould continue my jobs while at the same time assisting him. We figured we would stay there and help rebuild our finances and when Bob was recovered maybe we could resume our plans.
I was grateful and surprised by God's provision but at the time I did not realize how well he had taken care of us. Bob slowly improved but unfortunately not as well as we would have liked. We were puzzled by his very slow recovery. Just about a year after we had moved to the Mini storage we recieved the news that the doctors believed Bob had Parkinson's Disease. He continued to get worse and two years later he was fully disabled and the doctors were concerned because he was degenerating much faster that the expected. Then in February if 2011 he was diagnosed with Multiple Systems Atrophy Parkinsonian. MSA with Parkinson's symptoms.
And so here we are Bob has a job that provides our housing and he has to resign because he is unable to continue to work. However I am able to take over his job and become the Resident Manager and we don't loose the job or our home. This job enables me to be at home to care for Bob, and while other couples work full time jobs and see each other for a few hours each night, I get to be near or with Bob all day. We know that his time will be shorter than we could wish for so we enjoy this time. God knew long before we did that we would need this place more than we could ever imagine. He hand picked and handcrafted it for our needs.
God provides, even way back when Bob was in the Navy, who knew that because of his service he would be able to have medical care? God did! Evrything that we have and are depending on are gifts from God. Friends, Church, Employers, Mechanics, Doctors every one and everything. Praise God he is so good.
Even though we have to walk in the desert place Blessed be His Name!
After thought- We do not know how or why Bob has this disease. We do not believe that he is being "punished". We do not beleive this for two reasons. Often we are subject to health issues because we live in a fallen world and stuff happens. Also Bob was given a verse that encouraged him. He was worried that maybe he had commited some huge sin and he was being punished , but God reassured him, with this verse:
"Now, as Jesus passed by, he saw a man who was blind from birth. And His disciples asked Him, saying "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither this man nor his parents sinned, but that the works of God should be revealed in him." John 9:1-3
Other versions say "for this purpose" We do not begin to understand all of God's purposes or how He plans to make them all come about, but Bob and I beleive that God is using this disease in our lives for His purposes and we are ready and willing to be participnats in God's will and work. We will give our testimony to God's goodness in our lives and His loving care. We will always shine the light on what is so fortunate in our lives and give God the Glory for it.
So now you know how we believe that God has been with us all along and how he is providing for us. I hope that you can take a closer and harder look at your life and see his hand in areas that you previously had no idea he was working and then you too can have a heart filled with joy and gratitude that will lift you up when you are in the desert place.
Several years ago Bob became deathly ill. He was having horrific headaches that were triggered by simply moving or standing up. This was the begining of a journey that took about two years before we found out that the cause was a rare tumor in his adrenal gland. We had it removed and thought that when he recovered we could start over and go back to the original plan of deliviering boats and becoming charter boat captains.
During the time that he was struggling with this unknown fiend I was going through a very trying time at my job, lost my position and was struggling to make it as a Real Estate Agent. Just about the time that we had discovered what was wrong with Bob and what the solution was we had gone through all of our savings and were at the point where we never knew when the next check was going to come. Time and time again I would close escrow, recieve a check, pay the bills and then sit down and say to God "What next? I don't even have a client in the pipeline". One particular time the phone rang immediately after that prayer and I sold another house and the cycle started over again. So I was learning to lean on God and trust him.
We had reached the point that we had to go to Seattle for Bob's surgery and because of the time required to facilitate this I was unable to tend to any clients leaving a huge gap in our finances. For several months I had been working two jobs and scraping by, I noticed however that our grocery bill was not eating up as much of the budget as it normally did and I wondered about it. When I finally figured out how we were able to afford to eat I was staggered by God's provision and the precious people who he had brought into our lives.
God's people, they are so precious to me. I had been attending a ladies bible study and become good friends with the leader. She in turn became friends with Bob and was having him work on her computer. He had a medication that helped him avoid the headaches but he was still fragile. Since she was familiar with taking care of fragile people I trusted her when she would pick him up and bring him to her house and have him there all day. She would call me at work and tell me she had him and if I came by to pick him up later would I like to stay for dinner? For several months I enjoyed the company of Leone, her husband Bob, and the widows and friends that gathered around her table nightly. That's what my epiphany was- Leone knew and she was feeding us. I found that I was only buying food for breakfast and a few dinners a week. She and God were caring for us and we had not even had to ask. They knew and they did.
So as we prepare to go to Seattle for surgery, we know that we will be returning to an empty bank account and our rent will be due. We don't even have the money for the gas to go to seattle or the hotel that I have to stay in for a week. The ladies bible study handed me a check. I had not shared my concerns- God told them.
Before we left for Seattle we recieved another gift. Leone's best friend Brigitte Janke and her son Mark owned a Mini-storage facility and were looking for a couple to be thier Resident Managers. So as we went to Seattle we knew that after Bob's recovery we would be taking over this position and moving into a new home. Bob would be the manager, Iwould continue my jobs while at the same time assisting him. We figured we would stay there and help rebuild our finances and when Bob was recovered maybe we could resume our plans.
I was grateful and surprised by God's provision but at the time I did not realize how well he had taken care of us. Bob slowly improved but unfortunately not as well as we would have liked. We were puzzled by his very slow recovery. Just about a year after we had moved to the Mini storage we recieved the news that the doctors believed Bob had Parkinson's Disease. He continued to get worse and two years later he was fully disabled and the doctors were concerned because he was degenerating much faster that the expected. Then in February if 2011 he was diagnosed with Multiple Systems Atrophy Parkinsonian. MSA with Parkinson's symptoms.
And so here we are Bob has a job that provides our housing and he has to resign because he is unable to continue to work. However I am able to take over his job and become the Resident Manager and we don't loose the job or our home. This job enables me to be at home to care for Bob, and while other couples work full time jobs and see each other for a few hours each night, I get to be near or with Bob all day. We know that his time will be shorter than we could wish for so we enjoy this time. God knew long before we did that we would need this place more than we could ever imagine. He hand picked and handcrafted it for our needs.
God provides, even way back when Bob was in the Navy, who knew that because of his service he would be able to have medical care? God did! Evrything that we have and are depending on are gifts from God. Friends, Church, Employers, Mechanics, Doctors every one and everything. Praise God he is so good.
Even though we have to walk in the desert place Blessed be His Name!
After thought- We do not know how or why Bob has this disease. We do not believe that he is being "punished". We do not beleive this for two reasons. Often we are subject to health issues because we live in a fallen world and stuff happens. Also Bob was given a verse that encouraged him. He was worried that maybe he had commited some huge sin and he was being punished , but God reassured him, with this verse:
"Now, as Jesus passed by, he saw a man who was blind from birth. And His disciples asked Him, saying "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither this man nor his parents sinned, but that the works of God should be revealed in him." John 9:1-3
Other versions say "for this purpose" We do not begin to understand all of God's purposes or how He plans to make them all come about, but Bob and I beleive that God is using this disease in our lives for His purposes and we are ready and willing to be participnats in God's will and work. We will give our testimony to God's goodness in our lives and His loving care. We will always shine the light on what is so fortunate in our lives and give God the Glory for it.
So now you know how we believe that God has been with us all along and how he is providing for us. I hope that you can take a closer and harder look at your life and see his hand in areas that you previously had no idea he was working and then you too can have a heart filled with joy and gratitude that will lift you up when you are in the desert place.
Wednesday, May 18, 2011
Moving to the Next Phase
The month of April (and also May) have been emotionally difficult. We have had to make Bob's diagnosis official by calling the Social Security office and filing a claim for disability. In the process Bob submitted his resignation to our boss Mark and I was given the official title of Manager. Although we all know the true manager is really Spike the cat. We are now in the process of moving Bob and his Bob cave upstairs. He is no longer requires to have his Bob Cave next to the office and moving him upstairs will put him and everything he needs on one level. This will also save me at least 3 trips up/down each time Bob needs something.
On one hand I am excited about the benefits that all these changes will bring about. However as I move through them and complete each necessary step I grieve. When I handed Mark the resignation letter, I had to go upstairs and have a good cry. It is a very sad moment when a man is forced to end this phase of his life. I spent this morning replying to and filling the requests of the SS dept and writing a cover letter. I became overwhelmed emotionally at one point and had to take a break. I forced myself to complete it and it is now in the hands of the USPS. I also had to address some unfinished business regarding a private transaction and in doing so had to explain Bob's situation. Both the issue and the explanation took some of the steam out of me. I still have one more area to address but I'm so tired and wrung out now that "I'll do it another day".
There now I have posted my current mood and feelings - or is that "Blogged". Now I want to go on to say how grateful I am!. This transition is necessary and we will reap great benefits from it and hopefully we won't have too many more "transitions" for a long while and we can get down to make the best of this time and enjoy it. How can we be grateful and joyful you ask?
God is taking care of us.
Firstly he provided the roof over our heads and the job that comes with it. The story is an amazing one of how we received this job and how it was tailor made for us long before we knew what we would need. It truly was a work of God and I'll post it as a separate post so this one won't be too long. (I know every thing I write is long). So.... We have a home and we were able to keep it by having me take over the job. We did not have to have a huge upheaval to make this change, like finding new housing or even a new job in this economy. All the changes so far have been on paper.
Secondly He has provided me with the ability to be Bob's full time care taker. Because we live where I work I am at home most of the day and available to care for Bob. I get to enjoy the day being near or with my husband. We don't know how many years we have left and he is still an enjoyable companion so instead of having to shut him up in an apartment all day while I work 40hrs or more a week with a few hours each day together, I get to enjoy him and fill my heart up with memories of Bob.
Thirdly He has provided resources I never dreamed of. Over the last 5 years it always seemed that if there was a program or benefit to be had we some how didn't qualify. I stressed out how I was going to care for him all the way to the end. I can't afford to house him in a nursing home if and when the time comes, and I had no idea how I was going to afford taking care of "his final arrangements". Also in between, there are going to be those times when I will need someone else to come in and take care of him and that can be expensive.One by one God has brought us the resources we need and some that I had no idea existed. When all the dust clears and everything is in place we should be in good shape for awhile. What a relief!
Lastly He has provide us a community. We have an amazing Neurologist - Dr. Heidi Heller. She gets who Bob is and relates to him very well at the same time she doesn't forget about the impact this has on me. I am going to an amazing church where I have made more close friends in 2.5 yrs than I have the whole 17yrs I've been in Spokane. Not to mention the Bible teaching is so Spirit filled and lead by God- I am blessed every time. Even though it can be risky I was encouraged to come to church Mother's Day and I was truly blessed on a day that is usually very painful due to our infertility. Last but not least are our home, Jobs and Bosses. We are so blessed the jobs have been very accommodating and the respective bosses are very supportive .
So while I may be slogging through the mud of red tape and emotional mine fields my heart is full of gratitude that is reflected in the song "Blessed be Your Name"
Blessed be Your name in the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
And blessed be Your name when I'm found in the desert place
Though I walk through the wilderness
Blessed be Your name
Chorus:
Every blessing You pour out I'll turn back to praise
And when the darkness closes in, Lord, still I will say:
Blessed be the name of the Lord !
Blessed be Your name!
Blessed be the name of the Lord!
Blessed be Your Glorious name!
Blessed be Your name when the sun's shinning down on me
When the World's "all as it should be"
And blessed be Your name on the road marked with suffering
though there's pain in the offering
Blessed be Your name
Chorus:
You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
Written by Beth and Matt Redman
On one hand I am excited about the benefits that all these changes will bring about. However as I move through them and complete each necessary step I grieve. When I handed Mark the resignation letter, I had to go upstairs and have a good cry. It is a very sad moment when a man is forced to end this phase of his life. I spent this morning replying to and filling the requests of the SS dept and writing a cover letter. I became overwhelmed emotionally at one point and had to take a break. I forced myself to complete it and it is now in the hands of the USPS. I also had to address some unfinished business regarding a private transaction and in doing so had to explain Bob's situation. Both the issue and the explanation took some of the steam out of me. I still have one more area to address but I'm so tired and wrung out now that "I'll do it another day".
There now I have posted my current mood and feelings - or is that "Blogged". Now I want to go on to say how grateful I am!. This transition is necessary and we will reap great benefits from it and hopefully we won't have too many more "transitions" for a long while and we can get down to make the best of this time and enjoy it. How can we be grateful and joyful you ask?
God is taking care of us.
Firstly he provided the roof over our heads and the job that comes with it. The story is an amazing one of how we received this job and how it was tailor made for us long before we knew what we would need. It truly was a work of God and I'll post it as a separate post so this one won't be too long. (I know every thing I write is long). So.... We have a home and we were able to keep it by having me take over the job. We did not have to have a huge upheaval to make this change, like finding new housing or even a new job in this economy. All the changes so far have been on paper.
Secondly He has provided me with the ability to be Bob's full time care taker. Because we live where I work I am at home most of the day and available to care for Bob. I get to enjoy the day being near or with my husband. We don't know how many years we have left and he is still an enjoyable companion so instead of having to shut him up in an apartment all day while I work 40hrs or more a week with a few hours each day together, I get to enjoy him and fill my heart up with memories of Bob.
Thirdly He has provided resources I never dreamed of. Over the last 5 years it always seemed that if there was a program or benefit to be had we some how didn't qualify. I stressed out how I was going to care for him all the way to the end. I can't afford to house him in a nursing home if and when the time comes, and I had no idea how I was going to afford taking care of "his final arrangements". Also in between, there are going to be those times when I will need someone else to come in and take care of him and that can be expensive.One by one God has brought us the resources we need and some that I had no idea existed. When all the dust clears and everything is in place we should be in good shape for awhile. What a relief!
Lastly He has provide us a community. We have an amazing Neurologist - Dr. Heidi Heller. She gets who Bob is and relates to him very well at the same time she doesn't forget about the impact this has on me. I am going to an amazing church where I have made more close friends in 2.5 yrs than I have the whole 17yrs I've been in Spokane. Not to mention the Bible teaching is so Spirit filled and lead by God- I am blessed every time. Even though it can be risky I was encouraged to come to church Mother's Day and I was truly blessed on a day that is usually very painful due to our infertility. Last but not least are our home, Jobs and Bosses. We are so blessed the jobs have been very accommodating and the respective bosses are very supportive .
So while I may be slogging through the mud of red tape and emotional mine fields my heart is full of gratitude that is reflected in the song "Blessed be Your Name"
Blessed be Your name in the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
And blessed be Your name when I'm found in the desert place
Though I walk through the wilderness
Blessed be Your name
Chorus:
Every blessing You pour out I'll turn back to praise
And when the darkness closes in, Lord, still I will say:
Blessed be the name of the Lord !
Blessed be Your name!
Blessed be the name of the Lord!
Blessed be Your Glorious name!
Blessed be Your name when the sun's shinning down on me
When the World's "all as it should be"
And blessed be Your name on the road marked with suffering
though there's pain in the offering
Blessed be Your name
Chorus:
You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
Written by Beth and Matt Redman
Tuesday, March 1, 2011
Patience
As a caregiver I can feel as if the whole world is standing at my door demanding my attention and everyone wants it NOW! As a couple you tend to divide the "chores", things he likes to do, things you like to do and the things that each of you do best. But when it comes to Care giving often ALL of those things (including the things you don't like or do well) become your responsibility. I always thought I had a very busy and full life and now it seems to have tripled. I have my things, his things and now the Parkinson's things. It can be enough to make me crazy!
It became a real struggle because I would feel the pressure to do everything, frustrated by the things that I don't do well and just plain ran away or ignored the things I didn't like to do until critical mass was achieved. I especially struggled with Bob"s requests. I seemed to believe that when he asked me to do something it meant that I was expected to do it right then. More often than not that would be extremely inconvenient or just down right impossible in consideration of other time related issues. For instance - as I am walking out the door to go to work and am already running behind he would request a task that would be extremely hard to do and still make it to work on time. I'm thankful that I have a lot of hair or I could very well be bald by now. Another repercussion would be my attitude and stamina. Both would deteriorate greatly and rapidly.
I became grumpy, grumbly murmuring unattractive comments and becoming exhausted by the stress placed by the demand of trying to do all of it. Pressure lead to stress, stress to exhaustion, exhaustion to a very unhappy and sullen demeanor. This created it's own feedback as the person we take care of will feel the effects of the discontent.I became extremely ungracious and often martyred in my approach to "The Chores" He became defensive, feeling as if he were a burden, frustrated that he couldn't do things for himself and would nag me because he perceived that I would ignore his requests (or demands depending on both our moods).
Last month was all about balance. This month seems to be about patience. Patience - what a really hard thing to acquire or remember on a daily basis. We can get so bogged down in our gotta do's that we do not gladly welcome additions to the list. Patience is not a zen thing where we calmly take everything in stride. Sometimes patience is simply not getting annoyed and snapping or lashing out at each other. Patience is not wallowing in the negative, having a thin skin, bowing to the pressure or taking on an impossible task in an impossible time frame. We are not super human and neither is our loved one.
One of the things that I learned and once understood was greatly relieved of some pressure was that He doesn't always need or want it right now. With the Parkinson's he has found that if he doesn't voice the thought when it occurs he will forget it so he will tell me right then. That doesn't mean he needs me to do it now, but he may need to know when I will do it. He knows that he forgets and he knows that I have a lot on my plate therefore it would be easy for me to forget so he has some anxiety about this. so I need to
#1 Clarify the request
#2 Determine the expectation of when it needs to be done.
#3 Affirm that I will do it and when I think I can and sometimes show him how it fits into my day and other tasks. (Caution - this is for his comfort and understanding of your process. Not a chance to whine about your overwhelming schedule)
#4 Make it important to complete it for Him. Not all of my tasks are that important that I can't accommodate him.
#5 Remember Balance! Husbands are husbands and wives are wives - does he really need me to do this? Or does he really need to do it himself. Or maybe - Does it really need to be done?
Instead of letting life and responsibilities overwhelm you so that you become this unhappy frazzled nasty worn out person. Patience - take a deep breathe and evaluate, rearrange things if you need to, and maybe even re-evaluate what is necessary and what is not. Realize that not everything needs to be done now and some things can be let go of. What is important? What is necessary? And sometimes what is just plain fun? That has to be thrown in every now and again to keep your sanity.
Speak kindly - impatience is unattractive and poisonous. Take a deep breath and reply kindly as if you are in a meeting and laying out the day's schedule. Take the temper out of the words, how you say a thing is just as important as what you say. Sometimes the way to take the temper out of the words may mean you may need to rephrase what you were going to say. Take out the ugly and negative or just don't go there at all.
It's alright to confess to having a struggle with doing all you had planned- He might even have a solution or an idea that is helpful. Remember you can still be a team and it's helpful if he still feels like part of the team.
Humor helps with patience. I've been known to be stomping up the stairs for the umpteenth time and catch myself being a brat. So I will yell down to him "Sorry! evidently my evil twin sister is not feeling very gracious right now. I'll just show her the way to the front door and be back in a minute!"
It became a real struggle because I would feel the pressure to do everything, frustrated by the things that I don't do well and just plain ran away or ignored the things I didn't like to do until critical mass was achieved. I especially struggled with Bob"s requests. I seemed to believe that when he asked me to do something it meant that I was expected to do it right then. More often than not that would be extremely inconvenient or just down right impossible in consideration of other time related issues. For instance - as I am walking out the door to go to work and am already running behind he would request a task that would be extremely hard to do and still make it to work on time. I'm thankful that I have a lot of hair or I could very well be bald by now. Another repercussion would be my attitude and stamina. Both would deteriorate greatly and rapidly.
I became grumpy, grumbly murmuring unattractive comments and becoming exhausted by the stress placed by the demand of trying to do all of it. Pressure lead to stress, stress to exhaustion, exhaustion to a very unhappy and sullen demeanor. This created it's own feedback as the person we take care of will feel the effects of the discontent.I became extremely ungracious and often martyred in my approach to "The Chores" He became defensive, feeling as if he were a burden, frustrated that he couldn't do things for himself and would nag me because he perceived that I would ignore his requests (or demands depending on both our moods).
Last month was all about balance. This month seems to be about patience. Patience - what a really hard thing to acquire or remember on a daily basis. We can get so bogged down in our gotta do's that we do not gladly welcome additions to the list. Patience is not a zen thing where we calmly take everything in stride. Sometimes patience is simply not getting annoyed and snapping or lashing out at each other. Patience is not wallowing in the negative, having a thin skin, bowing to the pressure or taking on an impossible task in an impossible time frame. We are not super human and neither is our loved one.
One of the things that I learned and once understood was greatly relieved of some pressure was that He doesn't always need or want it right now. With the Parkinson's he has found that if he doesn't voice the thought when it occurs he will forget it so he will tell me right then. That doesn't mean he needs me to do it now, but he may need to know when I will do it. He knows that he forgets and he knows that I have a lot on my plate therefore it would be easy for me to forget so he has some anxiety about this. so I need to
#1 Clarify the request
#2 Determine the expectation of when it needs to be done.
#3 Affirm that I will do it and when I think I can and sometimes show him how it fits into my day and other tasks. (Caution - this is for his comfort and understanding of your process. Not a chance to whine about your overwhelming schedule)
#4 Make it important to complete it for Him. Not all of my tasks are that important that I can't accommodate him.
#5 Remember Balance! Husbands are husbands and wives are wives - does he really need me to do this? Or does he really need to do it himself. Or maybe - Does it really need to be done?
Instead of letting life and responsibilities overwhelm you so that you become this unhappy frazzled nasty worn out person. Patience - take a deep breathe and evaluate, rearrange things if you need to, and maybe even re-evaluate what is necessary and what is not. Realize that not everything needs to be done now and some things can be let go of. What is important? What is necessary? And sometimes what is just plain fun? That has to be thrown in every now and again to keep your sanity.
Speak kindly - impatience is unattractive and poisonous. Take a deep breath and reply kindly as if you are in a meeting and laying out the day's schedule. Take the temper out of the words, how you say a thing is just as important as what you say. Sometimes the way to take the temper out of the words may mean you may need to rephrase what you were going to say. Take out the ugly and negative or just don't go there at all.
It's alright to confess to having a struggle with doing all you had planned- He might even have a solution or an idea that is helpful. Remember you can still be a team and it's helpful if he still feels like part of the team.
Humor helps with patience. I've been known to be stomping up the stairs for the umpteenth time and catch myself being a brat. So I will yell down to him "Sorry! evidently my evil twin sister is not feeling very gracious right now. I'll just show her the way to the front door and be back in a minute!"
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