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.

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"

Tuesday, October 4, 2011

Am I a Hard Hearted Hannah or a Wise Woman?

Last Thanksgiving Bob's Niece became engaged to be married. They planned the wedding for the following October in Sedona Arizona. Bob had strong reservations about going.

To be fair he had a condition at that time that was severely limiting his ability to even leave the house and our ability to afford such a trip was non- existant. But I told everyone that if it was humanly possibly we would be there.

Well he had surgery and his quality of life was much improved. We started taking him out to do things that we had always enjoyed. The first outing was with some friends, we went to Bayview Idaho on Lake Pend O' Reille to view the fireworks. This had been a family tradition from back when the kids were really small and Bob had missed it for several years because of being ill. Robin and Diane made sure that Bob knew that they cared more about spending time with him that what condition he was in. The message started to sink in. The next week a customer gave him the gift of a mobility scooter, which, as any of you who know Bob will not be surprised by, he promptly took apart.
He even painted the motor housing




He had me painting the Body

Taking it for a Spin after it was put back together

This was a wonderful gift and is one of the items that has had the biggest positive impact on his life since he became disabled. When one has a project like this it always works best if you have a deadline, so I made the Port Townsend Wooden Boat Festival our deadline.

Here's how the Hard Hearted Hannah comes in. He was intrigued enough with the scooter that he was willing to accept the festival as the deadline to get the scooter in working order. However he did fuss a bit and tell me he was relunctant to go. I further told him that it would be a dry run for the big event and that would be the wedding in Arizona, to which he flatly stated that he was unable to go, to which I would reply "We'll see". And so it went, repeatedly. He fussed and I held firm.

Now I totally understand his position, We had never taken such a huge trip since he had been ill and he is embarassed for people he knew when he was healthy seeing him in his current condition. He is very uncomfortable and sure that people will have a negative response. I knew for certain that he needs to get over the embarassment, that those who love him want to see him and I will not allow him to become a hermit. I was unsure that we would be able to handle the trip, so keeping in mind that it could be a complete disaster I did promise that he would never have to do it again.

Gradually the trip to Port Townsend arrived, the scooter was ready and away we went. While he was relunctant to see people he hadn't seen since he became ill, the trip wasn't too long for him and the lure

of the sea and wooden boats called him. We also had the help of our friends Trudy and Jeff. So the trip to Port Townsend commenced.
We set him up with his laptop in the back of Trudy's Yukon and loaded up the scooter behind us
He got so confident with the scooter the secound day that he ditched us
we later found him at this seminar
It was a very sucessful trip
We learned a lot on that trip, so I put a lot of time in thought and preparation in planning for the trip to Az. He still did not want to go but I held firm and he finally gave in. He was really very nervous about all the aspects. His list of worries went like this:

  1. It's not safe for me to go on an airplane I could catch a cold from someone and it could kill me
  2. My family will be shocked by how I look, I don't want them to see me this way
  3. This is too far, too hard and too expensive.
and so it went.

But I held firm and told him he needed to go
  1. They loved him and this was an important event
  2. We learned a lot of thing on the Festival trip that will help us on this trip
  3. He would break Michelle's heart (He said this was playing dirty)
All three nieces came to the hotel to walk thier Uncle Bob over to the Resort




He was never ignored all weekend

The wedding was beautiful



And the Bride was thrilled to have him there

He had a wonderful time, and we both had a terrific vacation. I had forgotten how much fun he could be to travel with and It was so much more fulfilling to go a share things with him than to go by myself and then try to tell him about it. He even went four wheeling with me through the Red Rock country.
We dared to take the rental car

The scenery was amazing and we got to see it together
The reason he's so fun to travel with- we get to see things most others don't
He was invited into the cockpit during a layover
So why did I call this title this blog "Hard Hearted Hannah" ? Because even though I was endeavoring to do what was right for Bob, to push him when he needed pushing, I occasionally worried that I was so involved in making him go that maybe I was missing something and He really shouldn't go.
It's again that balance thing. We are constantly walking that fine edge of what is good for him and what isn't. Always I keep it in my mind, I try to keep a backup plan so that if it goes south we can deal with the emergency. At one point he thought he was having a gall bladder attack (it was possible) and I had to research what we needed to do if he needed to go to the ER in Sedona.

In the end He had a wonderful time and even conceeded that since he was doing better than last year (in the ways that count for a trip) he might be willing to go on another trip. I am so glad I stuck to my guns and so very glad that it all worked out well

Sunday, August 28, 2011

Rough week

Some weeks are filled with discovery, others just day to day stuff and then there are weeks that have significant milestones. MSA progresses much faster than Parkinson's Disease, however both have stretches of status quo and periods of dramatic change. Neither progresses in a manner that you can say- Oh! we have moved into the next phase. Every patient has a mixed grab bag of symptoms.

 I go regularly once a month to a care giver's support group and between the combined knowledge of the group I learn about a lot of things that we could be facing. I could let this freak me out, but because it is a group I have learned that everybody has a different reality and that he probably won't get all these things. What helps is that when something does happen I can see it and know why it happened. This brings me to the first thing this week.

#1 - Bob fell.  Let me allay all fears - He is fine and didn't have to go to the ER. It was the classic middle of the night, had to go the the bathroom fall. Because he hit his head (and has a small gash) I called  911. I have decided that I am not messing around with his care If he had fallen on the carpet and didn't appear to have any problems I'd have hefted him up checked him out and let it go. But 3am, head and blood - I call the paramedics. I always look for the benefits in a situation and even in this I can see it. The Fire station is across the street from us. I have previously gone over and made a report about Bob so they would have a clue. The minute I called they knew who and where we were (and not just because it was on their screen).

The Benefits? - They got to meet Bob and asses him personally. They got a look at the apartment and realized the challenges they would be facing if he had needed transport. Besides the non accessibility of the apartment you don't want to bring the Firetruck into certain driveways between buildings, so they learned how best to arrange the vehicles. Believe me they were actively inspecting options because... They knew they would be back. And that was the hard thing. They will be back. Fortunately this was a relatively minor incident and so we were able to make the most use out of it. Oh and Bob was really impressed with the treatment he got and less likely to be reluctant to ask for help when we need it.

The next day Bob and I talked about it. Why did he fall?  He told me that as soon as he entered the doorway his leg stuck or "Froze". Because of the support group I knew that often doorways present a challenge to PD'rs. For some reason they often freeze in doorways and because he was hurrying he still had some momentum and when his leg froze he could not recover and he went down. So we talked about ways to help cope with these kind of situations.

So tough thing #1 coping with falls, having to call for help and realizing - this is just the beginning.

#2 - My parents are getting older and it is never a good thing when my sister calls on a Sunday afternoon. My mom is currently staying overnight at the hospital for tests and observation. She's fine for now but she was having significant chest pains and they aren't playing around. Prognosis? - Likely a change in meds possibly a procedure. Appears to be an early thing that detection will prevent a more serious event.

I must say that my sister is an awesome guardian of my folks and I so appreciate that I can count on her to manage their situations while I focus on Bob and I know that when it's imperative she will let me know if and when I need to come to Portland. I could feel guilty about being so far away - but I need to look at it as - we are a team and she is doing her part and I am doing mine and when we need to consolidate - we will. I thank God for siblings who are so competent and easy to work with. Well behaved, well loved and loving God what an awesome family to belong to!

#3 - this one is subtle and because he doesn't read this blog I can express my concern here.Memory is a very complicated and multi layered thing. He has never had a great memory for stuff like names, and short term things ect. He has a photogenic memory for his profession. In his mind he can project on the wall any schematic he has ever seen. That's one of the reason's why he is so good at fixing things. This is why I nurture his computer addiction and why we benefit as much as the people who bring their computers to him. It's his therapy, it keeps his brain working and uses areas of his memory that are firmly embedded in his brain. By the time someone is diagnosed with Parkinson's and then later MSA there is a neurological loss that can be up to 80 percent.



So - it's been a tough week but it's also been filled with the Love of my community and God's people. I had some wonderful times of recharging and respite with my Ladies bible study. I received some recognition for a huge creative project I did this summer that was unexpected and flattering to be so recognized. And several people have told me that they appreciate me and my testimony as a caregiver for my husband. It always amazes me how other's perceive me and it's nice to know it's not as bad as I would think :) Sometimes their perspective is something I hadn't realized and it can be enlightening to see a different perspective of yourself.

God provides the nourishment that I need as I travel this earth and I will continue to hold on to his hand, put my roots deep into his everlasting water and live the best life that I can and hope that it brings praise and glory to him.

Thursday, August 25, 2011

My Best Intentions: Musings on dealing with people offering alternative treatments.

Earlier I wrote a blog about how Bob and I felt about Alternative treatments. I needed to hash it out and write it down so that when we were confronted with those who are passionate about whatever miracle cure they have found we could make our statement, clearly concisely and well thought out and then they would understand and go their way.

Recently I had the opportunity to execute this plan. It didn't go well. The petitioner continued to push and finally I caved and allowed the information to be mailed to me. A week went by and I was called and asked when I wanted to schedule a phone or face to face consultation. I refused again, stated our beliefs and reminded this dear passionate person that I had expected the info in the mail.

A week later I received said material, scanned it and our minds were not changed. We have encountered some of the proscribed items and found absolutely no benefit whatsoever. Maybe it works for someone else but truly we tried and it was nothing... So I filed it away, not quite ready to dispose of it and hoping that was the end of it.

A week later I received a phone call. "Did I get it?' they asked. Yes, I replied. Maybe after a little chit chat the topic will end. "Did I read it?" Uhm... I scanned it. "What did you think?" It was pretty much what I thought it was and we don't think it will benefit us.

I was trying, really but there appeared to be no way to get off this merrygoround. So I resorted to blunt - I'm really sorry that you have put so much effort into this but I have been trying to get you to see that we are not open to this. We have our reasons and I only agreed to receive the info in the mail because you insisted.

Instantly, they saw the light. Unfortunately they were embarrassed. It was what I was trying to avoid. I felt really bad. I don't want to hurt anyone, but they weren't listening. I appreciate everything they were trying to do. I'm glad they are finding relief with their system, but everybody has their own journey to take and even some boundaries that they won't cross and if that can't be respected, someone is going to get hurt.

There is so much stuff out there. We do have to be careful and responsible. Maybe Bob and I will miss something that could help. But I would rather ere on the side of missing it than becoming involved in something that would not honor my Lord and King. I know who is in charge of our lives and I will rely on Him to guide us in this journey and I know that He will make sure that we have everything that He has prepared for us because we are His willing servants and we will glorify Him in abundance and in need.It is not our decision if Bob gets well, it is God's decision, filtered through his purposes and His Devine Will.

Wednesday, August 24, 2011

Laura Story Blessings (lyrics)


My new favorite song By Laura Story "Blessings"

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching(s) of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Laura has an incredible Story:

In 2006, a trial entered Story’s life that would not only provide her with a deeper understanding of God’s sovereignty, but also serve as fodder for the songs on her new record. After one year of marriage, Story’s husband was hospitalized with a brain tumor.

“There was a time he was on a breathing machine and we weren’t sure he was going to make it. I spent my whole life singing, ‘’Tis so sweet to trust in Jesus,’ but until Jesus took me through something where my only option was to trust Him, I didn’t really know that sweetness,” reflects Story. While supporting her husband through surgery, radiation, complications, and intense physical therapy, Story has composed new songs with meaty, real substance that have ministered to her as much as they will minister to her listeners.

“It’s hard to understand why God would allow us to go through this, but I know He works all things together for good, and I feel my new album is reflecting that. Though He leads us through valleys, that’s when we get to trust Him and draw closer to Him all the more. Though I’ve doubted, His grasp has never released, never slipped. He’s remained completely faithful to me. He has proven that He really is my foundation and my hope.”

On a regular basis, Story gets to share this hope with the 100+ women she ministers to through her job at Perimeter Church; and it’s not a job she’s giving up anytime soon. After all, the opportunity to pour into others’ lives and treasure each moment reminds Story that she is just a passenger on this remarkable journey.

“Mine is not the perfect voice or the perfect life. My life is as messy as the next person’s, and God is using me to speak to the church. For this season of my life, God has really blessed me with some insight into who He is and what that has to do with me. For some reason He just gives it to me in song form.” (reprinted from "Lyrics Hall")

Tuesday, August 9, 2011

Bitterness

I was 45yrs old when my husband first became ill and 49 when he was diagnosed with Parkinson's Disease and 51 when we were told that He really had MSA, that it was terminal and his life span had been shortened considerably. For a wife to have to face the realities of becoming the caregiver of a disabled and terminally ill husband - this is very young.

We had hopes and dreams and plans. We were active and adventurous and free spirited. Hopes of working together, dreams of following the sea, plans to rebuild our finances and maybe own a home or a boat again. We worked on a Lake cruise boat and took vacations with just a tent and no plans. We met amazing people and had amazing experiences. And then we got stuck. Confined to staying at home and putting everything on hold, not knowing what was wrong and at every stage it kept getting worse until we knew that our life would never be the same again. I always thought that the life I'm living now couldn't happen for another 30yrs. I was wrong.

So as we settle into this life we now have - people are curious and they ask me questions. "How do you do it?" "Is he hard to care for?" "Does it bother you?" or they offer well meaning sympathy "That's so sad, and your so young, I couldn't do it."  What they want to know is am I putting up a "Good" front on things or am I really the happy woman I seem to be and if so How? How come I'm not angry? How can I do what I need to do and give up those hopes and dreams we once had and not be - Bitter?

I was - Bitter. I was - Angry. Especially through the years when we had no idea what was wrong or if it would ever end, and I fought giving up my hopes and dreams. My family will tell you I am very goal oriented. I conceive of a plan and then I work to make it come to pass. I used to say - give me a plan and I can deal with anything. But I wasn't planning on this and there isn't really a plan you can focus on, we don't know how this is all going to move along, Ultimately all we know is right now and what the end result is, all the in between is a mystery.

But I can tell you that I am no longer- Bitter. I am no longer - Angry. Don't get me wrong, I Grieve, and I get tired and frustrated and sometimes scared. Every time we have an episode I wonder if this will pass or if we have entered into a new phase of "Reality". Thankfully God was grooming me for this journey, and even when I had not quite "Got" the lesson, I was beginning to follow the lesson plan and incorporate it into my life.

So this morning during my quiet time it all came together. I love it when you explore the word of God and see an amazing truth and you can say "YES!" that's what it is and yes that's what I'm learning to do!

Jeremiah 17:5-8, 13
A curse on the man who puts his trust in man,
     who relies on the things of the flesh,
     whose heart turns from the Lord.
He is like dry scrub in the wastelands:
     If good comes, he has no eyes for it,
He settles in the parched places of the wilderness,
     a salt land, uninhabited.

A Blessing on the man who puts his trust in the Lord,
     with the Lord for his hope.
He is like a tree by the waterside
     that thrusts its roots to the stream;
when the heat comes it feels no alarm,
     it's foliage stays green;
it has no worries in a year of drought,
     and never ceases to bear fruit...
Hope of Israel, Lord!


So here's what stood out for me:

"He is like dry scrub in the wastelands." - dry, bitter easily burnt up weeds - nope I don't want that.
"He is like a tree by the waterside." - green and bearing fruit - yep that's what I wan

What's the difference?

"A curse on the man who puts his trust in man."  -VS- "A blessing on the man who puts his trust in the Lord."

What are the results in each choice?

"He settles in the parched places." Dry , bitter and alone
""When the heat comes it feels no alarm, it's foliage stays green."

Even though the bad times come, and they will (It says so right there 'When the heat comes') we can avoid being dry and bitter and revel in being green and bearing fruit. I can be free from worry even when there is a drought by trusting in God's provision and I can bear fruit by glorifying God and caring for my husband and not letting bitterness in. I believe that I am learning to do this and God is in the process of perfecting this attitude in me. If you haven't heard how God has been working in our lives please read the previous blogs that go into a lot of detail about His provision for us.

We are in a drought, a terminal illness, God has provided abundance in family, friends, jobs, home, medical, finances and church. But the biggest blessing is relying on him and enjoying my time with Bob.

So "How do I do this?"

I am a tree that "Places his trust in the Lord, with the Lord as his hope." and that is "Planted by the waterside that thrusts its roots to the stream."

My roots are planted in the Word of God, He is the one that has living water.

Jesus said that he had living water to give us. John 4:14
"but whoever drinks of the water that I shall give him will never thirst. But the water I shall give him will become in him a fountain of water springing up into everlasting life."

How can I be bitter if my life is well watered by the Word of God that provides living water as a well springing up inside of me? Water that keeps me from thirsting and gives me everlasting Life?

So to answer the questions in the beginning - I "Do it" through reliance and trust in God. I'm not bitter about how it isn't fair that we have to endure this "Drought" so young because I plant myself in the Word of God and His living water sustains me. Bitterness and Anger have no place to sit in my life because I bubble up with the Joy of the Lord. My prayer is that I continued to dwell in His word and never withdraw my roots from His streams.


Saturday, July 23, 2011

Alternative treatments

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.

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.

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

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!"