Relationships

Hope or Reality?

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It is Lynn’s belief that if he accepts that he has MS then he is allowing MS to “have” him. He says that he has seen enough people who we struggling along, maybe feeling bad, but still going along until they find out they have a serious condition.  Then as soon as they accept that they have cancer or heart disease or whatever, they give into it and no longer push through it. So what he tells people is that he was diagnosed with MS but that he refuses to accept that he has MS.
Though I understand what he’s saying, I don’t buy it myself.  I’m the type who wants to know as much as I can so I can take control of my options.  I want to choose what I do and when I do it. I want to plan for my future.  I’m a realist. I want to know, within reason, what to expect, good or bad.  I know that knowing can sometimes have a “self-fulfilling prophesy”  component to it but I think that knowing doesn’t mean you have to just accept that nothing can be done but instead it allows you to make intelligent decisions.
When we are expecting test results that may not be good, Lynn usually tells the doctor to tell me the details and he tells me to just take care of it because he doesn’t want to know.  I’ve found that’s not entirely true.  The reality is that he has to ease into the knowledge. He’s more like the person who s-l-o-w-l-y peels off the bandage while I’m the one who ripes it off, sees stars for a moment, and then takes a deep breath and moves on. 
This difference in how we view life and the future has us at odds at times.  For instance, before he found out he had MS, we bought land to build a house.  He wanted to do it all himself so for about five years, he designed the house, researched materials, and found someone to draw the detailed plans.  Then he began to build the house.  We currently have a complete foundation that has been sitting there untouched for 2-3 years.  Last summer, he decided we were going to find subcontractors to start back to work on it.  He has not made much progress on that decision other than he has selected a builder and has some contractors selected and he’s re-designing the house to adapt to being in a wheelchair.
He has changed the design of the master bathroom to make it easier to shower.  He’s figuring out how to put a floor to second-landing ramp in the living room so he can drive his wheelchair to the two lofts that will be at either end of the open living space.  He continues to work on the new home, planning for the future.  He’s looking forward to the day he can oversee it being built and moving in.  He even still wants to add a pond in the back so he can fish….
Me, other the other hand–I’m thinking, “yeah right.”   I have no true belief that we will ever move into that house.  In fact, right now, I can’t say that I even want to.  The house we live in now is wheelchair accessible.  My daughter and son-in-law live ten minutes away.  I have a good neighbor I can call on to look out for the place if I’m away.  It could certainly be designed better for us but if we moved, I would have so much work to do to get the house ready to sell and I had rather burn it down than try to pack everything we have in it! (not really but it will truly be a nightmare to pack up)
If I share that with Lynn, however, then it’s the same as if I’m saying he will never get better.  He works out every day and pushes every day to get stronger so that he may someday be able to walk again.  I have to be so careful with what I say so that I don’t take that hope away from him….but I’m afraid to hope. I know how MS works, especially when it gets to this stage.  It doesn’t go away.  I occasionally hear stories of people who were in wheelchairs who walk again but I’m afraid to hope that that will be him because I don’t want to be disappointed when/if it doesn’t happen.  But I don’t want to stop him from hoping or trying either.  He needs that hope.  He needs something to work toward….and it could happen, couldn’t it?
What if he’s right?  What if the only reason he is unable to do anything for himself is just because he needs to build more strength? What if there is not permanent damage but instead what we see is his de-conditioning from all the set-backs he has had?  What if this new diet continues to make him feel better and by feeling better, he can do more and by doing more, he gets stronger and by getting stronger, he regains his ability to walk?  It could happen, couldn’t it?  If it did, then my reality would totally change and I would be willing to move and pack and whatever else was necessary to start a new life in a new home.
So what do we do?  Hope or live in reality?  I guess I promote hope for him with a strong dose of reality for me.  I still need to plan for “what if” and I still need to make sure his needs, as they are now, are met.  He can hope but I need reality to cope….that’s just the way it is….

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The Day It all Changed

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In 2010, I was going into work every day and Lynn stayed home alone. At that time he was still walking though he would lose his balance frequently and fall. However, being the stubborn man he was, he chose not to use his rollator unless absolutely necessary (i.e. he was too tired or had too far to walk) and would instead hold on to furniture to get around.  On this day in March, I left early to head to Williamsburg to attend a conference for the day.  It was approximately an hour drive to where I needed to go.  I got everything set up for Lynn for the day and off I went.  I had made it to the conference center and was checking in as my pager went off.  I dropped by things on a chair and went out to find out who needed me.  When I saw my home number, I got nervous but figured he was just checking to make sure I had arrived safely.  (He gets very concerned whenever I have travel.) 
I called and said, “I’m here safe and sound…no worries.”  Then I heard his voice and realized that maybe I had a worry after all.  He started out with something like, “I need you.”  One second, I’m annoyed thinking, “what can I do from here?” and the next I’m scared and I’m thinking again, “what can I do from here?”  He explained that he had fallen when he tried to get out of bed and had been trying for an hour to get up.  He was exhausted and panicked and obviously scared.   I did my usual nursing telephone assessment (are you bleeding, can you breath okay, anything hurting, did you hit anything on the way down…) I asked him about calling an ambulance but we didn’t have a key hidden outside and there would be no way for them to get in and no one else was at home for me to call to run over there.  So I told him to hold on and I’d be there as soon as I could.  I grabbed my things and took off.
By the time I arrived home, Lynn had been lying on the floor near a heating vent for about three hours.  He was exhausted from struggling to get away from the vent;  dehydrated from the heat; emotionally distraught from fear and frustration.  He was overheated and started vomiting shortly after I got him off the floor (which was very difficult by this point).  He was in bed for the next two days and was never the same after that.  To this day, he’s now afraid for me to leave him alone for any significant period of time and panics at the though of me being far away.
That day marked the day our lives truly changed due to MS–more so than being diagnosed; more than his losing his job; more than anything that has happened since.  That was the day he became DISABLED.  That’s when he faced his mortality and he realized that life as he knew it had changed and he was no longer in control.
That’s also the day we became “disconnected” from others  After that I started staying home full-time to work and only went into the office for meetings and then only if I had someone to stay with him.  We became more isolated.  Afraid to be around anyone who might make him sick, we stopped going to church.  Limited to a wheelchair (because now he was afraid to walk on his own) we could not visit friends because there was no wheelchair access.  I could not go visit my parents who live five hours away because their home is not wheelchair accessible.  I could not leave him along to go shopping so I shopped via the internet.  I couldn’t visit anyone so they had to come to us (and since we live in a rural area, that was not very convenient.)  I realized that if we kept going that way, depression would set in for both of us and his condition would deteriorate even more.
So we had to find ways to get connected!  I started asking for help from church. We have a wonderful church member who has created a ministry of sending email messages to members to keep anyone who wants to know up to date on prayer requests and praises or requests for assistance.   I sent email requests for help and before long I had the help I needed and the process of connecting again began.  Our families and friends now come to us more often because we have reached out and asked for help…and they give it abundantly.  Even our stent(s) in the hospital last year served to connect us to others.  Through that visit I came up with the idea of this blog by talking to the wife of another MS patient. 
And through this blog, I have connected even more. I connect to people who have MS, people who know people who have MS, people who care for people with MS.  Some live close by and some live very far away.  Some know very little about MS and others have lived with it for 20-30 years.  We are all different but we all have a common connection–MS or caregiving.  That bond makes us family and friends instantly–a connection that brings us together even though I would not know most of these people if I was sitting across from them.  But through this bond of our desire to care for each other and relate to each other,we are connected on an intimate basis.
The National MS Society is starting a similar connection on March 12.  It’s called MS Connection and will be located at  http://ntl.ms/MSconnection.   It looks interesting and looks like a way to help us all make more connections so none of us have to deal with this condition alone.  Check it out when you get a chance.  I think you’ll find it has lots of potential.

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Happy Anniversary

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Today is my Mom and Dad’s 59th wedding anniversary.
When people comment about the sacrifice I’ve made to care for Lynn, I truly don’t understand why it seems so different.  I practice now what I saw my parents demonstrate for each other and for us, over and over again. Before I was born, my mom quit her job to take care of her family.  She has never gone back to work outside the home but her work inside the home keeps her busy more hours than most “day” jobs.  When we were in school, she was always active in the PTA; she and Dad often were the classroom parents who brought in cupcakes and other goodies.  They came to every play, every ball game, ever presentation that any of us had. They were always there for us.
When one of them is sick the other one is right by their side helping to make them comfortable. If one grieves, so does the other. If one is happy, so is the other.  They go everywhere together and not because they have to but because they want to.  They truly are the ultimate example of togetherness and oneness.  It was through their example that I learned commitment and self sacrifice. 
And it wasn’t just for us that they sacrificed their time.  They always pitched in to help our other family members with their projects and needs. My parents have always done what they can for others.  If someone in the neighborhood lost a family member, they always went to the wake and they always brought food to the house.  If there’s a celebration, they again bring food and enjoy the event with others.  My Mom records everything through pictures–then she creates these awesome photo albums that includes names, dates, locations and events –each picture has it’s own story.  She’s become the community historian.  She shares those memories with others at all types of community events and enjoys the pleasure her albums bring others.
My Dad can build and repair anything.  He spoiled me in my expectations for a husband.  If he sees something that needs doing, he does it then and there. Be it a car, a piece of equipment, an electrical appliance, plumbing, siding, brick laying, carpentry, whatever it is, my Dad can fix it like a pro.  He loves to read in his spare time and I’m sure that’s where I got my love of reading as well.  We often exchange books and talk about characters.  When we were young, he worked shift work.  He often took only a short nap before returning to work so he could stay up and be with the family, or watch a ball game, or help coach the team for one of his sons.  If there is a community event that needs a helping hand, he’s there. 
At the age of 79 my Dad and Mom are key partners in the community’s fire house and fund-raising.  They help clean up the parks in the area.  They cook for hundreds of people to raise money for the fire house.  They never stop.
When my Mom’s mom started having TIAs and strokes, she and her sisters took turns staying with her and caring for her.  During her last days, I think they  were there nearly full time.  When my Dad’s mom needed a place to live after my Dad’s brother died, they took her in and made her at home. 
My parents are caregivers at heart and they have passed that trait down to me.  They seek to make other’s lives better and there is nothing they would not do for me and my family.  I have been blessed to have them as my parents and to have their example as my guide.
Happy Anniversary, Mom and Dad.

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Privacy? You've got to be kidding…..

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I keep thinking about how this is a topic none of us talk about but everyone has to face at some point so I decided to write about it.  Warning, it may seem insensitive to some but in reality it’s one of the elephants in the room we don’t talk about.
If you are a caregiver (or the one receiving the care) you know that there is no such thing as privacy anymore.  I think that’s one of the most difficult things to get used to in the shift of our personal dynamic with each other.  It was one thing when I was a young Mom and my children followed me everywhere, but once they got to a certain age, that need to go with me everywhere stopped.  They became too embarrassed themselves to invade my privacy.
It’s different when you start losing your privacy when you’re an adult.  I’m 54.  I was raised to be very modest.  I have never liked going to the bathroom with anyone else around.  I never liked showering in gym class.  If I wanted to take care of personal hygiene, I wanted it done behind closed doors…alone.  Furthermore, I wanted those same lines of separation with my spouse to a large extent.  I was never one who felt comfortable with too much sharing of personal space or private moments.  There were just some areas of our relationship I preferred to keep separate.
Once Lynn became disabled, that of course, had to change.  He has NO privacy at all. He had to let go of his dignity completely as his ability to use his hands or balance himself were no longer in his control.  At first it was a little awkward but, like with most things, you both get used to it after a while…especially if you can laugh about it.  We have been in some very awkward situations that could have been humiliating and extremely embarrassing for both of us but instead, when I started feeling that uncomfortable tension mounting, I took a look at the situation we were in and I started to laugh.  Then he started to laugh and before long we were both nearly hysterical laughing. It has really gotten us through some difficult moments.  Thank goodness he has a good sense of humor or my laughing might not have gone over as well.
Another challenge we have had to over come is public restrooms.  I never realized before how difficult it is for the disabled in public areas.  Most places have a “his” or “hers” bathroom. Of course when we go out, that’s a problem for us because he can’t go into the “hers” and I don’t want to go into the “his.”  So what do we do?  We go to the van and take care of the catheterization using the tinted windows in the van to have privacy.  I admit though I see some strange looks at times when I catch sight of people looking in the window as they pass by!
Lynn’s really a good sport about those situations but I’ve found that I’m not there yet when I need a private moment.  You would think that as often as I have to take him to the bathroom or cath him or shower him that I would have no problem when I need to go myself when he’s around but honestly, I still want my privacy!  I resent not being able to go to the bathroom without hearing my name called for help or him waiting expectantly for me in the public restroom while I relieve myself.  That’s just a little too much closeness for me.
So I guess what I’m saying is I want a double-standard when it comes to privacy.  I want my space and I want my own time to have my space without being urged to hurry up.  I want to be able to lock my door, take as long as I want, and do what I want to do in private.  I admit I’m actually glad at times that he can’t follow me when he’s hooked up to his peddlar or in bed because I know that even if he’s calling for me, he will just have to wait. So the bathroom is still my one private domain (at least at our house). I might have to repeatedly say, “wait a minute,” but I can still have my privacy to some extent. 
I’m sorry that he can’t though.  It’s just one more loss that most people don’t even think about but for those of us of live with it everyday, it’s a reality that takes some getting used to.
Hope I haven’t offended anyone.

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In sickness and in health…till death do us part

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Donna and Lynn October 11, 1997

Sometimes I catch people looking at me in sympathy and you can read in their eyes that the path I have chosen is too much of a sacrifice but what they don’t seem to understand is that I did in fact choose this life.  No, I did not go out and look for someone who I knew would someday become disabled.  In fact, I was very reluctant to marry anyone after my first marriage ended. 
When my first husband left, he explained he had never loved me but thought I would make a good mother for his children so he married me…then realized that wasn’t enough.  Therefore, after being burned in that fire, I wasn’t so sure marriage was for me. I wanted companionship and I wanted someone who was a man of faith and had strong family values.  I wanted mutual sharing and participation in our marriage. 
The way I met Lynn was through answering his personal ad in the paper.  I screened him as he screened me for two hours during that first phone call.  I prayed about continuing to see him and it seemed that I had the green light.  We dated for about four years before we got married.  Neither of us were in a hurry because both of us had bad experiences the first go round.  I in-fact prayed often to ask God, “are you sure he’s the one I should be with?”  We actually have very little in common except for our faith and family values.  Was that enough?  God seemed to be saying, “yes.”  Even on my wedding day, I kept wondering, “should I really do this?  We are SO very different, how will we ever make this work?” but I took a leap of faith and moved on.
The first few years were very hard as we tried to blend our families and life styles. Those differences I was afraid of were really hard to adapt to.  We really struggled and both of us wondered during that time if we had made a mistake.  We just could not intertwine our lives it seemed.  We each kept ourselves at a distance; I guess both being afraid it would not work.
My biggest issue with our marriage was that he did not need me.  By nature, I “care” for people.  I do things for them; that’s how I show my love.  I couldn’t really do anything for him.  He didn’t need me and I felt shut out.  Then he got MS and though he was still physically able, he needed me.  He needed my support; my reassurance and my understanding. 
I think he had a fear though, at least initially I think he did, that I would get frustrated and leave.  He often talked about how he didn’t want me to get too isolated or fed up with him because he didn’t want me to leave.  I think he finally understands now that I have no intention of leaving.  God gave me a caregivers’ heart.  I don’t mind being a caregiver.  I like being needed in fact.  I don’t mean that I don’t get frustrated and that I never want to escape; no, I feel like that nearly every day.  What I mean though is that we have a bond that we will not break now.
Lynn needs me.  He needs my companionship.  He needs my help.  He needs my participation in his life.  So now I have what I was looking for when I first got married.  I feel wanted and appreciated and needed.  His illness meets my needs in a way.  I guess that sounds sick to some but I don’t think so.  I think God is very wise.  He knew what I needed and he knew what Lynn was going to need, and he put us together.  He gave us both perseverance and commitment to make it through the tough years so that now we both have what he intended us to have.  We are truly one now.  We are each a part of the other. 
I know many marriages break up when one of the partners becomes disabled.  I can see how it could easily happen.  It’s really hard to be the strong one all the time and to dedicate your life to the comfort of someone else, but when I said, “in sickness and in health…till death we do part,”  I meant every word of it.  I’m in it for the long haul whether that’s this year or twenty years from now, he’s stuck with me because I’m not going anywhere.

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Happy Anniversary

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Donna and Lynn October 11, 1997

On October 11, 1997, Lynn and I got married.  As I stood at the entrance to the sanctuary, with my ten-year old escort (my son), my soon to be husband, was playing his guitar and singing me a song that he wrote just for our wedding.  The theme of the song was, “you’re my best friend.”  How true that was to become.
As I stood there listening, my son kept saying, “you’re not going to cry, are you mama?”  I didn’t.  I was just amazed at his ability to sing to me when I knew how sentimental he was.  He’s much more sentimental than I am.  I’m a realist.  He’s a softy. 
Thinking back to those days, I thought our greatest challenge would be blending the two families and it was indeed a challenge.  There were times in those early years that I was not sure our marriage would make it…but we were committed.  We had said our vows before God and we intended to keep them….no matter how difficult. 
The first years were strained as two very independent people learned to adjust.  I admit my greatest issue with the marriage was that I didn’t feel that Lynn needed me at all.  He did everything himself, he wasn’t one who shared his thoughts very much, and we didn’t really enjoy many of the same entertainments so we lived fairly separate lives.  Realizing that was a major problem we worked on finding commonalities and sharing our lives more.
Fast forward fourteen years….now we share everything and he’s totally dependent on me and we’re closer than we ever could have imagined.  Yes, we even finish each other’s sentences and we often start to mention something we’ve been considering to find out the other one has been thinking the same thing.  We are truly one now.  So while MS has certainly been a major challenge that neither of us really expected back in 1997, in many ways it was an answer to my prayers.  I had often asked God to make us closer–to make us one.  I’ve learned over the years, God has a strange way of answering prayers and I have to say, this one falls into that category, but God took a dreadful condition, MS, and made it an answer to prayer.  How awesome is that?  Because you see, now, we truly are, “best friends.”

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