Welcome to March which is MSA Awareness month. MSA is a form or disease related to Parkinson's Disease. Bob was initially diagnosed with PD but this was changed to MSA Feb 23, 2011 one year ago.
Definition of MSA from the Mayo Clinic:
Multiple system atrophy (MSA) is a rare neurological disorder that impairs your body's involuntary (autonomic) functions, including blood pressure, heart rate, bladder function and digestion. Formerly called Shy-Drager syndrome, the condition shares many Parkinson's disease-like symptoms, such as slowness of movement, muscle rigidity and poor balance. Multiple system atrophy is a degenerative disease. To see more regarding MSA follow the Mayo Clinic's link :
www.mayoclinic.com/health/shy-drager-syndrome/DS00989
So this means that March is "Bob" awareness month for me and this blog.
How does MSA affect us? What is his current condition? How are we coping? In sharing these things we hope to take advantage of "Awareness" month to make you aware of MSa and Bob.
How it affected us?:
Since Bob was dx one year ago - Feb 23, 2011- We have had a major change in our jobs. Bob retired from his job as the manager of the mini-storage and I resigned from my job to take over his job. This allowed us to stay where we were living as he was a resident manager and now I can continue to work and still be a full time caregiver. this is the best of both worlds - I stay in the workforce and I am home with him full time.
What is his condition?:
I am fortunate that for the most part Bob is fairly easy to care for, however gradually as time has passed he has needed more and more help with daily life. Two years ago he could walk around the property, reheat food in the microwave, dress himself and get in and out of bed (although that was difficult). He was still able to manage his medications and only occasionally forget. He could still run the office, answer phones and open and close the gate each day. I could still work part time and go away for a weekend and he would be okay. He usually didn't travel with me because of the work schedule and travel was more difficult and uncomfortable for him. He was severely constipated and had developed some large hemorrhoids and so he tended to stay at home and not go out, visit friends, travel and go to church- He remained at home where he could sit in comfort and address his bathroom issues as he needed to.
MSA is a degenerative disease and in several ways he has lost ground and needed more and more help, but in other ways we were able to improve or learn how to cope with things in such a way that he has become more mobile and social. In the begining of last year we were able to deal with the constipation, it's still an issue but we have learned how to keep it at a controled level and know how to deal with it when it gets chronic. He also had surgery that dealt with the hemorrhoids and are now keeping them at bay. All through this disease we will encounter syptoms that while they will never be completely gone we can learn to minimize them or deal with the when they flare up. We have measures we can take to make our lives more liveable. For now. Eventually they will over take us. During the year - he had the surgery, we were given a mobility scooter, we learned about several incontenence products and installed a bidet that helps with his constipation. these items have made an amazing difference in his life.
So now this year he can travel, he goes to church with me on sundays (with his scooter), He gets out on the scooter as much as he can. We have lots of stores near us and he has "Shopped" Home Depot. Lowe's, Shopko, Harbor Frieght, Dollar store, URM, Michael's and many more. When the weather gets better he wants to try going to the VA on his scooter, I think I'll follow on my bike. Because he is able to travel now, I am taking him with me, last year we went to the Port Townsend Wooden Boat Show on the Washington coast and to his niece's wedding in Sedona, Az. We learned how to travel by car and plane with the scooter and with Bob's special needs and we had a great time.
As far as the daily stuff that I detailed at the begining. He can no longer walk any significant distance, while he can get around the apartment sometimes he needs a hand because he can be unstable.His posture is bent forward due to the disease, his muscles are rigid and painful and he has lost some of his motor skills and can longer wash his hands or bathe on his own. We experienced a fall in the bathroom one night because his foot will "Freeze" and not move even while his momentum wil continue to carry him forward. this can be hazaedous when he is sleepy and wobbly- so I will usually guide him to the bathroom. For the rest of the day, unless it's a bad day, he is fine. He no longer is able to get into the fridge and reheat his food in the microwave , I need to serve it to him and then take it from him when he is done. Some foods are harder than others to deal with, so adjustments have been made, foods avoided and different utensils are used. He rarely dresses himself anymore and needs help getting in and out of bed. We are installing bedrails and a trapeze that should help him be more independant in that regard. I now have to manage his pills and make sure that he takes them and has applesauce to help swallow if needed. His voice can be soft and he will often stutter but he can still talk my ear off.
How are we coping?:
His brain is still amazingly sharp and he is very very interested in EVERYTHING! He is a joy to be around and fun to travel with I'm so glad that we get to be together now and can enjoy this time together. Every morning after we have finished dressing we indulge ourselves in the daily HUG. this can last for a very long time. It is an essential daily ritual for us. Just husband and wife, Bob and Susan. We are taking advantage of his ability to travel right now and are planning several trips this year. We are making sure that he has all the safety tools he needs so he can go adventuring on his scooter this summer. He has a mapping GPS, multiple lights (including a strobe), a loud bell and a cell phone. Weekly he has had started attending church with me on sundays and wednesdays and recently joined. He is getting to know and be known by many people there and we are starting to socialize as a couple. Spiritually we talk about this disease and what it means to us and our future. He and I are both very willing to allow this circumstance in our lives to speak as a witness and testimony for God's goodness and blessing in our lives. Please read previous posts for specifics. We are wallowing in this togetherness and are secretly pleased to be able to be together so much even while we grieve the losses we have and will endure due to this disease.
So that is our current situation or the cliff notes. I hope that this has been informative to you about what we are dealing with and how and that you have become "Aware" of MSA and Bob this month. think of us often and send up a prayer for wisdom and strength.
Susan
Friday, March 2, 2012
Tuesday, February 28, 2012
Recieving the Blessings
So the last few months have been quiet, after all the business of the holidays, it's been a nice change. We haven't been motivated to do much and haven't had enough snow to write home about until recently.
Bob has been trying to get out on his scooter every day that is sunny and warm - makes me think about this spring and how much he will be adventuring. We got him a street GPS and I think I'll get him a phone he can text with. It will make me feel better (hopefully) when he is out and about. He apparently thinks that he can go to a lot of places that may be just a little too far, not safe, or complicated to get to. This spring and summer should be interesting. Youv'e got to love his spirit!
Recently I wrote about Eucharisteo, being grateful before the blessing, and I am happy to report that we have recently recieved many blessings.
After visiting the Bob's GP and telling him all about the adventures and joy that the donated scooter had provided in Bob's life, the GP figured out how to get us a brand new scooter. Now Bob is all decked out and styling . the new scooter also breaks up into smaller parts and I can get it into the car much more easily. We passed the blessing on by donating the scooter to my mom who has difficulty walking long distances.
Because of his new found mobility he has been attending church with me every Sunday and Wed, even prodding me to go on Wed's when I might have stayed at home. Originally I was concerned that having him join me at church would simply extend my caregiving duties and I would loose that time of worship and respite that I had been enjoying. I was selfish and yet worship and respite are very important for me to be able to care for Bob. Yet I didn't want to prevent him from being able to worship (and get out of the house). I was conflicted. Well it all worked out. The men at the door have been amazing in learning about our routine, getting the scooter set up and guiding Bob into a place in the sanctuary. After the service we attend different classes (a men's and women's) The men make sure he gets there and gets settled with coffee and munchies. Afterwards he meets me out in the lobby. He wanders around while I visit and has his own visits. I LOVE it!! I get to have him with me in worship and I get to relax in my caregiving duties because others are always around to help. I didn't loose a thing and I gained more than I can imagine.
Two things have happened recently at church that have just floored me:
The Sunday before Valentine's Day the sermon was about marriage. It wasn't your typical mushy sermon on mariiage and I won't expand any further on it because the best part came at the end. We usually have a prayer and an altar call at the end of each sermon. We are encouraged to turn our lives over to God (if we haven't yet) or if we have been movedto do so, to bring anything to God there. That Sunday we were encouraged to come forward for a variety of reasons. Maybe we have had some issues in our marriage, or difficulties from life that affected it or we just wanted to bring our marriage forth to lift it up to God for his blessing and to honor each other.
Bob: "...go forward"
Susan :"Do you mean you want me to go up?"
Bob: "No I want us to go up"
Susan: "Okay, move your scooter and I'll follow"
Bob:" I want to walk"
So I get him out of the scooter and we start to walk forward, people are begining to return to thier seats and he stops.
Bob:" They are all leaving"
Susan:"That's okay they will wait for us"
And so we proceeded to go up to the altar where my husband took me to honor me as his wife and to seek God's blessings. There evidently was not a dry eye in the house. Pastor came off the platform and hugged us telling Bob how much he blessed him personally.Wow! All I can say is it was amazing to be a wife that has a husband who loves her, appreciates her and is willing to honor her before God and man. What an amazing moment, one I will treasure forever. I will be able to visit this memory when the times get rough, when he is gone, what a gift!
The second was that last week Bob attended the membership class and joined the church. I did two years ago and never thought that he would be able to do so also. But now on sunday morning I can check off "member" instead of "member" and "attender". It may seem to be a little thing but it helps to shore up the "Contented" column of my life.
As a caregiver I belong to a few caregiver sites and have heard or read many horrific stories of how this disease can affect relationships.This disease takes both a physical and emotional toll on the caregivers, it can destroy and warp the mental and emotional capacity of the patient. Paranoia, delusions and hostility can dominate the day to day life. Right now Bob and I do not have to battle these things and I hope we never do. I trust that the good Lord will help shield us from this. But this I know that if we do have even a little bit of a struggle or we encounter more than our fair share of it - He has given me this day to remember and to give me strength to know the truth that Bob loves, honors and appreciates me. this will comfort me and give me strength to honor him by taking care of him with love and joy.
So just as I gave thanks this fall for blessings I had yet to recieve I will rejoice in them now as I recieve them and continue to give thanks for blessing as yet not bestowed, knowing that God knows what I need and when I need them.
Bob has been trying to get out on his scooter every day that is sunny and warm - makes me think about this spring and how much he will be adventuring. We got him a street GPS and I think I'll get him a phone he can text with. It will make me feel better (hopefully) when he is out and about. He apparently thinks that he can go to a lot of places that may be just a little too far, not safe, or complicated to get to. This spring and summer should be interesting. Youv'e got to love his spirit!
Recently I wrote about Eucharisteo, being grateful before the blessing, and I am happy to report that we have recently recieved many blessings.
After visiting the Bob's GP and telling him all about the adventures and joy that the donated scooter had provided in Bob's life, the GP figured out how to get us a brand new scooter. Now Bob is all decked out and styling . the new scooter also breaks up into smaller parts and I can get it into the car much more easily. We passed the blessing on by donating the scooter to my mom who has difficulty walking long distances.
Because of his new found mobility he has been attending church with me every Sunday and Wed, even prodding me to go on Wed's when I might have stayed at home. Originally I was concerned that having him join me at church would simply extend my caregiving duties and I would loose that time of worship and respite that I had been enjoying. I was selfish and yet worship and respite are very important for me to be able to care for Bob. Yet I didn't want to prevent him from being able to worship (and get out of the house). I was conflicted. Well it all worked out. The men at the door have been amazing in learning about our routine, getting the scooter set up and guiding Bob into a place in the sanctuary. After the service we attend different classes (a men's and women's) The men make sure he gets there and gets settled with coffee and munchies. Afterwards he meets me out in the lobby. He wanders around while I visit and has his own visits. I LOVE it!! I get to have him with me in worship and I get to relax in my caregiving duties because others are always around to help. I didn't loose a thing and I gained more than I can imagine.
Two things have happened recently at church that have just floored me:
The Sunday before Valentine's Day the sermon was about marriage. It wasn't your typical mushy sermon on mariiage and I won't expand any further on it because the best part came at the end. We usually have a prayer and an altar call at the end of each sermon. We are encouraged to turn our lives over to God (if we haven't yet) or if we have been movedto do so, to bring anything to God there. That Sunday we were encouraged to come forward for a variety of reasons. Maybe we have had some issues in our marriage, or difficulties from life that affected it or we just wanted to bring our marriage forth to lift it up to God for his blessing and to honor each other.
Bob: "...go forward"
Susan :"Do you mean you want me to go up?"
Bob: "No I want us to go up"
Susan: "Okay, move your scooter and I'll follow"
Bob:" I want to walk"
So I get him out of the scooter and we start to walk forward, people are begining to return to thier seats and he stops.
Bob:" They are all leaving"
Susan:"That's okay they will wait for us"
And so we proceeded to go up to the altar where my husband took me to honor me as his wife and to seek God's blessings. There evidently was not a dry eye in the house. Pastor came off the platform and hugged us telling Bob how much he blessed him personally.Wow! All I can say is it was amazing to be a wife that has a husband who loves her, appreciates her and is willing to honor her before God and man. What an amazing moment, one I will treasure forever. I will be able to visit this memory when the times get rough, when he is gone, what a gift!
The second was that last week Bob attended the membership class and joined the church. I did two years ago and never thought that he would be able to do so also. But now on sunday morning I can check off "member" instead of "member" and "attender". It may seem to be a little thing but it helps to shore up the "Contented" column of my life.
As a caregiver I belong to a few caregiver sites and have heard or read many horrific stories of how this disease can affect relationships.This disease takes both a physical and emotional toll on the caregivers, it can destroy and warp the mental and emotional capacity of the patient. Paranoia, delusions and hostility can dominate the day to day life. Right now Bob and I do not have to battle these things and I hope we never do. I trust that the good Lord will help shield us from this. But this I know that if we do have even a little bit of a struggle or we encounter more than our fair share of it - He has given me this day to remember and to give me strength to know the truth that Bob loves, honors and appreciates me. this will comfort me and give me strength to honor him by taking care of him with love and joy.
So just as I gave thanks this fall for blessings I had yet to recieve I will rejoice in them now as I recieve them and continue to give thanks for blessing as yet not bestowed, knowing that God knows what I need and when I need them.
Wednesday, December 14, 2011
A Servant's heart - or Surviving being a caretaker
As you all know or have read in previous posts, my epiphany on how to have a servant's heart and pointing me on this road to learning how to be the very best caretaker Bob could ask for started with an angry shovel full of snow. I was having a temper tantrum. It was all about me and how unfair life was and then God interrupted my tantrum.
There have been many ways that I have learned (and still am learning) how to be a caregiver
In the following years I have had to do more and more for him and we have received an even more dire prognosis that we originally prepared for. Along the way God has whispered in my heart and prepared it to face each thing as it comes. I say face because to describe it any other way would to imply that I had nothing to learn and already had the skills to "deal" with it. No I faced it as one who knows that there is an enemy that must be dealt with and begins to gather up the necessary skills and tools to overcome. I am not shocked or surprised-I had heard whispers that it was coming and when it arrived I was, if nothing else, prepared to face it and learn how to deal with it.
An example - I had almost reached my 15th anniversary with West Marine (July) it was a slim hope, but I had hoped that I could get at least that far along before I had to resign and become Bob's full time caregiver. But as Bob needed me more and more, the demands of the ministorage, the filing for Social Security and the arrival of a new store manager, it became clear that the time had come to resign. I'm often asked if it hurts or was it hard? The answer is - yes, it's sad to leave a job I loved, but no- God had been preparing my heart and when it was time I embraced it and was in fact eager to go on to this new chapter.
As you can imagine I have received a lot of advice (and support) on how to navigate this path I am on. I have relatives who have taken this journey, a caregiver support group, friends who are both caregivers and the person who is ill. Professionals and lay people, Family and church family - all are amazing and I am so blessed to have them in my life. I welcome and am blessed by all of you. Thank you for reading my blog and bless you for the comments you make. They are an amazing encouragement to me and sometimes provide me with surprise with your insights. How you view it and how I see it are very different and I am always surprised ,delighted, encouraged and grateful that I am not alone or forgotten.
So as I become a full time caregiver there are lots of things that I struggle with.
- The first is the worry about becoming overwhelmed, suffocated and burnt out. My goal, or mission statement as it were, was to survive this time in my life in such a way that I would still be vibrant, healthy and relevant. I didn't want to be so used up that there was no life left in me and I just shriveled up and expired.
- Secondly I want to be able to provide Bob with the best care I possibly can, so that he will be as healthy as he possibly can be for as long as he can be.
- I want to remember to not only be his caregiver but his wife
- I don't want to just make sure that I only take care of his day to day needs but that I care for his mind and heart and soul. He needs to know that he is precious and relevant and not just someone who has to be taken care of.
There have been many ways that I have learned (and still am learning) how to be a caregiver
God has whispered in my heart with cautions, preparing me for what was coming and soothing my fears for what is ahead by promising to go before me and make a way
In the following years I have had to do more and more for him and we have received an even more dire prognosis that we originally prepared for. Along the way God has whispered in my heart and prepared it to face each thing as it comes. I say face because to describe it any other way would to imply that I had nothing to learn and already had the skills to "deal" with it. No I faced it as one who knows that there is an enemy that must be dealt with and begins to gather up the necessary skills and tools to overcome. I am not shocked or surprised-I had heard whispers that it was coming and when it arrived I was, if nothing else, prepared to face it and learn how to deal with it.
An example - I had almost reached my 15th anniversary with West Marine (July) it was a slim hope, but I had hoped that I could get at least that far along before I had to resign and become Bob's full time caregiver. But as Bob needed me more and more, the demands of the ministorage, the filing for Social Security and the arrival of a new store manager, it became clear that the time had come to resign. I'm often asked if it hurts or was it hard? The answer is - yes, it's sad to leave a job I loved, but no- God had been preparing my heart and when it was time I embraced it and was in fact eager to go on to this new chapter.
I am blessed with an amazing community of support
As you can imagine I have received a lot of advice (and support) on how to navigate this path I am on. I have relatives who have taken this journey, a caregiver support group, friends who are both caregivers and the person who is ill. Professionals and lay people, Family and church family - all are amazing and I am so blessed to have them in my life. I welcome and am blessed by all of you. Thank you for reading my blog and bless you for the comments you make. They are an amazing encouragement to me and sometimes provide me with surprise with your insights. How you view it and how I see it are very different and I am always surprised ,delighted, encouraged and grateful that I am not alone or forgotten.
I have been fortunate to be able to draw vast comfort and insight from the books that I have been reading in my daily quiet time
My quiet time each morning has a variety of books that I have been reading. It usually involves a bible study I am doing, a book that the ladies at Crossover church have found and are all reading, or one that has been given to me or I have stumbled across. Even a book about desiring God over Food book that my health and fitness group are reading through together and when I don't have anything in particular to read -good old Oswald Chambers will fill in quite nicely. I rotate them through the week and am amazed at how seemingly off topic books will lead me to such insight into my life and it's challenges.
And the conclusion is it's all about perspective and attitude - that results in leaning on God's strength not mine
I have been following Ann Voskamp's journey of thanksgiving in her book "One Thousand Gifts - A dare to live fully right where you are". I've written about it in the post "Eucharisteo".
Attitude
Thankfulness
So I am endeavoring to live in the now by counting the blessings and giving thanks for them - now. Ann writes "I keep on counting blessings to keep on remembering to keep on walking out into the unknown."
Complaints vs Laments
Learning to know the difference between complaining and muttering - very self destructive activities, and offering God a lament about the things I grieve about. "True lament is the bold faith that trusts God enough to feel and cry authentic"
Perspective
Smallness
To make my self smaller because "How much larger your life would be if your self could become smaller in it!" and "the joy of small that makes life large" think about the feeling of smallness that we have when we stand on a rock like Half Dome - we are dwarfed by it's size and we stand in awe of it. I want the "wonder and worship" that "can only grow out of smallness."
Humility
Mary was humble - she was willing to put aside the dreams, plans and event the expectations of what her life was "supposed" to be to accept what God asked of her "In Mary's humility - her willingness to die to her expectations and plans - God exalts her. In her submissiveness to His will, he fills her emptiness with fullness of himself.
Putting it all together
Service and Contentment
When I do the work for God rather than for myself or for others I am filled with his strength and contentment. If I render service just to people, I can become weary and frustrated. I want recognition for what I do and start to believe that they owe me some kind of gratefulness for my sacrifice.but when I care for Bob because it is pleasing to God then the work becomes easier to do, my attitude changes, it becomes an act of worship and this is what makes me content.He will lend me the strength that I need, He will give me His joy to live this life. He will give me blessings and I in turn will bless others. In surrendering to this life of care giving I have found time and energy to invest in the lives of others. I have begun a campaign to reach out to my loved ones. The more I give up the more life he gives me. And so I no longer worry that I will be "used up" I am going to live as fully as I can now. paying attention to what He has given me and passing the blessing on to others.
- I am vibrant, healthy and relevant
- I can care for Bob well because it is a joy to do so
- I can separate the routine of tasks from the expression of a wife's love and be both
- I will always let Bob know how precious, important, vital and relevant he is even in this difficult time and make sure that he has the opportunity to experience these things in the community we live in by not allowing him to hibernate in the house and getting him out as much as possible to interact with others.
Friday, November 11, 2011
Eucharisteo - Give Thanks
I know that I am a very upbeat person, some would say "Bubbly" but that's not a description of a whole person. Joy and enthusiasm and all the things that go with it are like a well that continues to overflow and flood the visible parts of who I am. It's the deeper, quieter, easily overlooked parts that are actually the bedrock of me. On my facebook page I state that : I might be a bubbly person but I am also someone who likes to ponder things. I work hard, play leisurely and love God with all my might. I think the blending of both of these aspects help me to cope with Bob's disease.
As a resource for coping, occasionally I cruise thru a forum for caregivers of Parkinson's Patients. This forum is not for the faint of heart and although Bob does not have true Parkinson's they often deal with many of the things I do. It's a good reference source - It gives me more knowledge on how to handle things - like Dr's and Nurses, Surgery and Meds. I found advice on how to travel with Bob and it helped our trip to Arizona run smoothly. For example not all of Bob's necessary medications are prescription and since some of these are ingested in large amounts the liquids don't fit the category of 3oz and powders would/could be suspect. We were able to find pill forms, prepackaged powder doses and cookies that would take care of his needs and not cause the "Powers That Be" (or PTB's) a hissy fit.
Some of the posts are heartbreaking, but the others always seem to come along side to help encourage and support the struggling caregiver.Recently there was a person was really struggling and she was glad to see the honesty and struggles of others so she didn't feel so alone and inadequate. She had evidently been exposed to others that were "Little Miss Mary Sunshines". I don't know where she experienced this but I will say that there are those who seem to breeze thru this challenge and I hope that I am not one of those.
I want to be honest and real about how Bob and I are coping. Do I grieve? Yes! Do I get angry and scared? Yes! Do I get exhausted, overwhelmed, sleep deprived and become a ugly human sometimes? Yes! I fail often, and sometimes it's hard to not respond as a wife instead of a concerned caregiver. It's not always easy to tell if he's being challenged by his disability or he's just being a husband. We both wear two hats and sometimes you can't tell them apart.
So in the posts in this blog I have shared some of the deeper things that have helped me along the way, my Faith, the Word of God and the things that get Bob and I excited - the little (which are huge) victories, an inspirational song or testimony. Maybe these can help you too. But I don't want to neglect to show the hard things, it's not always sunshine and roses, and recently I have been reminded that we need to not only celebrate and give thanks for the "good" things it is very important to give thanks for the hard, even ugly things in our lives.
The word "Eucharisteo" has recently come to my attention, on the surface it means "Give Thanks". Where we see it used in the Biblical texts is when Thanks are given Before the miracle. If you break the word down into it's parts there is "Charis" which means Grace and the root of that is "Chara" which means Joy. So when we see a word that means give thanks that has grace and joy deeply rooted in it and it is commonly seen before the miracle - what can we say? We receive grace and joy when we express gratitude - especially in the midst of things we would not normally be grateful for. The lesson goes on to say "Thanksgiving is the bridge to Joy... from the not enough to to the more than enough. A further thought is - when are we going to not allow our circumstances to dictate how we live? Emotionally, Spiritually, Relationally? How will you choose to live?
I will choose to live as God sees fit to have me do so. As Philippians 4 says " In Plenty and in Want." For what reason, only God knows, Bob has this disease, so how will we choose to live? We will give thanks, we will be grateful. For the time we have together, for the providence of God in providing what we need. In the midst of want we have plenty.
If God had asked me to write my story it would have been vastly different. Children, comfort, long life, "The Golden Years" of retirement- we all know the dream. But that's not how it's turning out. We never could have children, we are far away from family, we live simply and will never "Travel the world" together, or grow old together. But there is a cautionary tale here. Be careful when you finite man that you are try to write the story. You might miss the very best blessings of all, miss the opportunity to change someone else's life or create something far worse than you are experiencing now. A King of Israel as he was dying was granted his wish to live and he was given another 15 years. He had been a good king but in those last 15 years he made mistakes and failed badly and sired a son who was to become known as the very worst King that Israel ever had. I believe I'll let God continue to write my story, He has a much better vantage point than I do.
One last thought - What good is it if you give praise and gratitude when things are going well? If you die or sacrifice for someone you love? Isn't that expected? As it should be? How much more valuable is it to be thankful and joyful when life sucks? To be grateful when hard things happen, to find joy in the midst of hard things, to sacrifice for the unlovable? In expressing gratitude in the midst of pain, hard, grief and want we recieve God's Grace and Joy and we can choose to not allow our circumstances to dictate how we live.
I live a hard life. He's dying. I work hard. and am required to perform unmentionable tasks. And I will rejoice that I am able to Love him, Care for him, Be with him. I will rejoice that we are going on our 34th year together and I am so vastly thankful that I know that when he leaves this earth he will be in the presence of God. You have no idea how much gratitude I have with just that one thing.
We hope you have a wonderful Thanksgiving and that when you give thanks for all the blessings that you have, all the good things you can name, remember the hard things and see how they can also bless your life and give thanks for them also. Practice Eucharisteo.
Susan
note: The lessons regarding Eucharisteo have come from 1) Ann Voskamp's Book "1,000 Gifts" and readings from 2) Oswald Chambers "My Utmost for His Highest" and 3)Teachings from the Women's ministries at Crossover Church in Mead, Wa - I have blended them all together and posted my combined "Take away"
As a resource for coping, occasionally I cruise thru a forum for caregivers of Parkinson's Patients. This forum is not for the faint of heart and although Bob does not have true Parkinson's they often deal with many of the things I do. It's a good reference source - It gives me more knowledge on how to handle things - like Dr's and Nurses, Surgery and Meds. I found advice on how to travel with Bob and it helped our trip to Arizona run smoothly. For example not all of Bob's necessary medications are prescription and since some of these are ingested in large amounts the liquids don't fit the category of 3oz and powders would/could be suspect. We were able to find pill forms, prepackaged powder doses and cookies that would take care of his needs and not cause the "Powers That Be" (or PTB's) a hissy fit.
Some of the posts are heartbreaking, but the others always seem to come along side to help encourage and support the struggling caregiver.Recently there was a person was really struggling and she was glad to see the honesty and struggles of others so she didn't feel so alone and inadequate. She had evidently been exposed to others that were "Little Miss Mary Sunshines". I don't know where she experienced this but I will say that there are those who seem to breeze thru this challenge and I hope that I am not one of those.
I want to be honest and real about how Bob and I are coping. Do I grieve? Yes! Do I get angry and scared? Yes! Do I get exhausted, overwhelmed, sleep deprived and become a ugly human sometimes? Yes! I fail often, and sometimes it's hard to not respond as a wife instead of a concerned caregiver. It's not always easy to tell if he's being challenged by his disability or he's just being a husband. We both wear two hats and sometimes you can't tell them apart.
So in the posts in this blog I have shared some of the deeper things that have helped me along the way, my Faith, the Word of God and the things that get Bob and I excited - the little (which are huge) victories, an inspirational song or testimony. Maybe these can help you too. But I don't want to neglect to show the hard things, it's not always sunshine and roses, and recently I have been reminded that we need to not only celebrate and give thanks for the "good" things it is very important to give thanks for the hard, even ugly things in our lives.
The word "Eucharisteo" has recently come to my attention, on the surface it means "Give Thanks". Where we see it used in the Biblical texts is when Thanks are given Before the miracle. If you break the word down into it's parts there is "Charis" which means Grace and the root of that is "Chara" which means Joy. So when we see a word that means give thanks that has grace and joy deeply rooted in it and it is commonly seen before the miracle - what can we say? We receive grace and joy when we express gratitude - especially in the midst of things we would not normally be grateful for. The lesson goes on to say "Thanksgiving is the bridge to Joy... from the not enough to to the more than enough. A further thought is - when are we going to not allow our circumstances to dictate how we live? Emotionally, Spiritually, Relationally? How will you choose to live?
I will choose to live as God sees fit to have me do so. As Philippians 4 says " In Plenty and in Want." For what reason, only God knows, Bob has this disease, so how will we choose to live? We will give thanks, we will be grateful. For the time we have together, for the providence of God in providing what we need. In the midst of want we have plenty.
If God had asked me to write my story it would have been vastly different. Children, comfort, long life, "The Golden Years" of retirement- we all know the dream. But that's not how it's turning out. We never could have children, we are far away from family, we live simply and will never "Travel the world" together, or grow old together. But there is a cautionary tale here. Be careful when you finite man that you are try to write the story. You might miss the very best blessings of all, miss the opportunity to change someone else's life or create something far worse than you are experiencing now. A King of Israel as he was dying was granted his wish to live and he was given another 15 years. He had been a good king but in those last 15 years he made mistakes and failed badly and sired a son who was to become known as the very worst King that Israel ever had. I believe I'll let God continue to write my story, He has a much better vantage point than I do.
One last thought - What good is it if you give praise and gratitude when things are going well? If you die or sacrifice for someone you love? Isn't that expected? As it should be? How much more valuable is it to be thankful and joyful when life sucks? To be grateful when hard things happen, to find joy in the midst of hard things, to sacrifice for the unlovable? In expressing gratitude in the midst of pain, hard, grief and want we recieve God's Grace and Joy and we can choose to not allow our circumstances to dictate how we live.
I live a hard life. He's dying. I work hard. and am required to perform unmentionable tasks. And I will rejoice that I am able to Love him, Care for him, Be with him. I will rejoice that we are going on our 34th year together and I am so vastly thankful that I know that when he leaves this earth he will be in the presence of God. You have no idea how much gratitude I have with just that one thing.
We hope you have a wonderful Thanksgiving and that when you give thanks for all the blessings that you have, all the good things you can name, remember the hard things and see how they can also bless your life and give thanks for them also. Practice Eucharisteo.
Susan
note: The lessons regarding Eucharisteo have come from 1) Ann Voskamp's Book "1,000 Gifts" and readings from 2) Oswald Chambers "My Utmost for His Highest" and 3)Teachings from the Women's ministries at Crossover Church in Mead, Wa - I have blended them all together and posted my combined "Take away"
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