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Fear of the Future

One of the ways we cope with Lynn’s condition is to deal with what we have “today” and not look too far ahead.  That’s especially true for Lynn; not as much for me.  My personal make-up requires that I have a sense of control about my life so I ALWAYS look ahead and plan for what’s coming up. I hate surprises and am not an impulsive person, at all! While that works for me, Lynn doesn’t want to think about the future.  He might plan for projects that he wants to do but he doesn’t want to really look at the future.  He’s almost, but not quite, the type to bury his head in the sand.  That’s especially true when it comes to MS.
Ever since he was diagnosed with multiple sclerosis, he has not wanted to learn anything more than he needed to know to manage his symptoms for that day. I was on-line reading all I could find the day we got home from the doctor’s office with the diagnosis. Not Lynn; he didn’t want to know anything about it and would ask me to close the screen if he came into the room.  Part of that, of course, was the fact that he had “lived” MS with his father who had died in his 40’s after a very progressive battle that put him quickly into a wheelchair and then a bed where he stayed till he died of complications.  It’s Lynn’s philosophy that if you are told about negative things that “could” happen, you’re more likely to subconsciously progress in that direction.  I can see his point of view on that so I try not to bring up symptoms he does not currently have and I don’t talk about disease progression.  When he talks about being able to stand independently or do this or that (things he has not done in over two years) then I mutter encouraging words, try to help him with his physical therapy toward that goal, and try to support his mental hope. Then in private, I continue to research what might be causing any new symptoms I might see and look for disease modifying therapies or devices to assist in his daily care.  I also admit that I DO think a lot about future care even though I try not to.
Currently, I am very fortunate that I can work from home and I have his family who comes in twice a week to help.  His mom and sister come on Mondays and his son comes on Wednesdays.  They are a God-send because on Mondays I have a lot of things scheduled that take time and it helps to have Lynn’s needs being met so I can focus on those things.  On Wednesdays I usually go into my office at work for any face-to-face meetings I might need to attend and to just remind people that I actually work there. However, I know at any point that assistance may no longer be available.  His son could get a job that required him to physically be at the office very day (he currently works from home and just works here on those Wednesdays).  His mom could get sick or his sister change jobs and they would no longer be available either.  My daughter used to help out but now she is a full-time caregiver for her son who has special needs and she can’t really manage his care and Lynn’s except for short periods; certainly not on a regular basis. I had a friend who used to come regularly to stay with him a few hours each Thursday but her personal demands have changed and she can rarely come any more.  Therefore, as time goes by my options for support have had a way of dwindling down.  That’s pretty common for long term conditions. People can help temporarily but long term is another matter.  So, I know that at some point, I’ll have to figure out how to pay for someone to come to my home or come up with another solution.
It’s discouraging the way resources are made available to those who do not work but for those of us who try to pay our own way, we can’t get any help.  For me to get assistance, I would need to quit my job, go on welfare, and maybe declare bankruptcy. I currently spend a lot of money on supplements that have really improved Lynn’s health but which are incredibly expensive!  I’m spending $3-4oo easily each month on supplements. Then there’s the grass-fed meats which are more expensive, medication co-pays, assistive devices that we find useful but which are not covered by insurance, and so many other expenses that to think about trying to come up with money to pay someone to stay here while I go into work, is mind-blowing… so I just don’t think about it yet.  I’ll deal with it when I have to since nothing is going to change between now and then…or could it?
A caregiver support group formed at my church in April.  We meet once of month.  In the group, we have one person whose spouse has a heart condition that limits his functioning, another whose spouse had a brain injury who needs significant support, one whose spouse has Alzheimer’s or something similar and three who had parents with cognitive or physical impairments needing care.  Since April, two have lost their loved ones and another has had a series of heart attacks which are limiting his life expectancy to months instead of years. As I told Lynn of each of these occurrences, I could see him becoming more and more concerned.
Our last meeting of the group was held at a rehab facility where two of the group had recently placed loved ones.  When I told Lynn about the one going into rehab and the issues associated with trying to take him home (his house is not handicap accessible with multiple stairs to get into the house and significant restrictions inside for using wheelchairs, lifts, etc.), I could tell it really bothered him. Later that day he shared that he was scared.  He’s so afraid that one day he will have to go into a nursing home.  He knows that even a well-run and high quality nursing home would mean he would get limited attention and would often be uncomfortable (he has A LOT of comfort needs.  It’s very difficult for him to feel comfortable and I’m forever adjusting this, moving that, changing whatever).  He also knows that he would feel isolated from family and friends because they would not be around all the time like I am now. He sees this happening to someone he knew who was able-bodied long after Lynn was unable to care for himself and it brings home to him how quickly things can change.
I assured him that as long as I’m able, he will never be put in a nursing home and that even if something happened to me, I’m sure the kids would take him in and work together to care for him. The reality is that I’m sure they would want to do just that, but could they?  They have jobs; they need to work.  They could not get financial assistance to care for him in their homes; just like I can’t, but they could get assistance if he was put in a nursing home.  How crazy is that?  It’s much more expensive to pay for inpatient care than to have a caregiver come to the home for a few hours but the more expensive one is an option, and the money-saving one is not.  Short-sighted? I would say so.
At any rate, I think my assurances helped him not feel as insecure.  He knows I’m overwhelmed with all I do and he knows my physical condition is deteriorating due to the wear and tear on my body from lifting and lack of sleep so he knows that I may mentally be willing but physically may not be able to do so.
So, what was my advise to him?  The same as always and the only thing that’s sure.  Just trust in God to take care of us when we need Him to do so.  He hasn’t failed us yet and He won’t fail us then.  I don’t know what the future holds for us.  I know Lynn’s likely to get worse instead of better.  I know I’m likely to have problems that interfere in my ability to care for him.  Can I do anything about that now?  No.  So I’m going to move forward in the manner I’ve used to cope so far…I’ll think about that later; not now.  For now, today, I have work to do.  He needs to be fed. He’s calling me to cath him.  I need to do some “work” work and I have some meals to prepare.  That’s enough for today.

Divine Intervention?

I’m supposed to be at my eye appointment right now.  Since I’m writing a blog instead, you are correct in assuming, I didn’t make it there today. I really wanted to go get my eyes checked but even more, I really wanted new glasses.  I wear progressive lens in very inexpensive frames and for the past two years I have struggled with them constantly slipping down my nose, irritating the bridge of my nose where they sit, and not being able to see anyone I was talking to who stood within two feet of me because I would have to view them through the wrong “progressive” section of my lens.  I had it all arranged…Lynn’s aunt and uncle were coming early so I could leave on time and I had planned in my mind how I would get my exam, order my frames and pick up things I needed at the store, but as they say….the best made plans of mice and men…

I got to bed at 2:30 a.m. last night which is fairly typical for me but not what I wanted to do since I had to get up at 6:30 a.m after a night of every two-hour catheterizations. So we agreed that we would get up at 7 and cut a few corners in getting ready.  I set my alarm and went to bed.  Got up at 4:30, did my thing, went back to bed.  Got up at 6 for another catheter experience and back to bed for an hour.  Next, I’m being awakened at 8 a.m.  Apparently, my alarm did not go off and Lynn had just woke up and needed to be cathed.  I checked but there was no apparent reason that the alarm did not work.  We figured out how to cut corners from our normal 3 hour morning routine to be able to be ready in 1 1/2 hours. We started our scramble doing multiple things at one time to get in all we could.  Our plan could work, PROVIDED his bathroom time went smoothly.

Well, you guessed it….his bowel regiment didn’t work today. That’s not unusual for when we have to go somewhere. Maybe it’s a subconscious fear that it won’t go smoothly that causes his nerves and muscles not to work for success but it’s often the case. Of course today was typical of that.  Two suppositories and a pediatric enema later and we have very return on our investment.  Ugh…I can’t leave him home with folks who cannot take him to the bathroom in the event his GI system decides to become cooperative later so I call and cancel my appointment.  I’ll reschedule eventually but I only have Saturday “coverage” every other week and the next time is my Caregiver Support group so it could be a month before I could reschedule.  Oh, well, what’s another month when I’ve been dealing with these irritating glasses two years anyway….

Actually though, I’m at peace with it.  Normally I get very upset when my plans get sabotaged by uncooperative body parts but for some reason today, it did not upset me at all.  I calmly told Lynn I would cancel my appointment and reschedule and never thought another thing about it.  Why? I never act that way (as I have shared before, when my plans get changed, I get frustrated and then my evil twin comes out) but today I was not upset at all. The way I figure it, God was telling me I should not go today.

I believe there are no coincidences in life.  I think God’s hand is in everything.  Not that he makes things happen, but that he is aware of and working through whatever happens. I do not believe that God does things TO us but that he works within whatever happens to and around us either for our good and that of someone else.  I do not believe he causes fires or earthquakes or terrorist attacks to get even with us but that He allows those bad things to happen and through those struggles we learn perseverance or we are humbled into realizing we need others or for some other reason unknown to us but for the good of someone or something.

Sometimes I wonder, “why us,” about Lynn’s condition. At the time he was struck down by MS, he and I both were extremely involved in our church; we were there almost every day of the week either in choir, drama, praise band, worship, or service.  We were actively serving God and reaching out to share His word but now we can’t even go to church.  We hardly even see anyone.  We went from serving others to being served, and served, and served…and it was a hard transition to make.

I’ve had people from church who come help us out say what a blessing it is to them to be able to do so and having helped others, I know that is true, but being on the receiving end is hard at first.  “It’s more blessed to give than to receive,” is true.  Being the “receiver” was initially embarrassing and humbling but eventually, I learned to accept that we were God’s receptacle for the service of others and to be thankful we had that role.  We have been blessed over and over again by His interventions using others on our behalf.

So why am I not upset today about not getting to my appointment?  Because for some reason, and I may never know why, I was not supposed to go to that appointment today.  Maybe I avoided an accident, maybe it was His way of preventing me from causing an accident due to lack of sleep, maybe someone else needed my appointment more than I did, or maybe it was so I could share my thoughts today with someone who needed to hear them.  I’ll never know, but I do know this….God did not want me to go to that appointment.  My alarm didn’t go off, I overslept, and Lynn’s bowel program all worked together to keep me here–so that’s that.  Not sure what the rest of today will hold but for now, I’m at peace.

Hope you have a good day as well.

Life's Precious Balance

As winter progressed to spring this year, Lynn was finally beginning to feel less fatigue, his muscles were getting stronger, his reactions to the Rebif injections were becoming less and less and it seemed that he was finally over the hump of recovering from his hospitalization in 2010, the anemia afterwards, and then the adjustment to the Rebif.  He was feeling good.
We set a goal of returning to church the first Sunday in April and were really getting excited about our plan to re-enter the fellowship of our church family. He started trying to get acclimated to his manual wheelchair so he would be able to tolerate sitting in it for up to two hours (our church elevator is old and cannot accommodate his powerchair so he would have to use a manual chair for the service and the 30-minute trip there and back).
That first weekend in April rolled around and he just wasn’t feeling himself.  We waited till the last minute but finally had to say, “no,” to our plans to go to church that Sunday.  We figured maybe it was the pollen build up because that always affected him.  Then the next few weekends after that, we had Daniel and Katie’s wedding so those activities were tiring him out, we said.  Each week we tried to figure out what was going on?  He said he was feeling like he felt when he first started Rebif.  Why was he going backwards?
I think this week we might have an answer.  Lynn asked his doctor to order some lab work on the recommendation of his dietician to find out why he could not lose weight.  He had been steadily losing about 1/2 to 1 lb. a week since he started trying to lose weight in January but around March/April he hit a plateau and no more was coming off.  Since Rebif can affect blood cell production and liver/thyroid function, we also asked for those values to be checked.  The blood work results came back this week and his thyroid TSH is up.  There’s our answer!  The Rebif has reduced his thyroid function so that he has developed a leaning toward hypothyroidism.
If you’re not familiar with hypothyroidism, symptoms include, among other things, fatigue, weight gain, and feeling cold.  All symptoms that Lynn has been experiencing and which have been getting progressively worse over the last several weeks.  Fortunately, the “fix” is an increase in his thyroid medicine so we know he will get better but often it takes several weeks to notice an improvement.  There goes most of the summer….  Hopefully he will be back to normal or at least less miserable when we go on vacation at the end of August.
When we figured out what was going on, what struck me is how tenuous  our health and, by association, our happiness is.  The thyroid gland is not very big but it carries a significant role in the health of the body.  A little too much or not enough hormone being released and it makes you feel like you’ve been run over by a tank, scrapped up, and then fed through a shredder.   That’s true though for so much of what makes our bodies work.
Have you noticed that if you get a paper cut on your finger or a blister on your toe how you are aware of that pain in your subconscious all the time?  Something so minor will make you favor that appendage.  By favoring that body part, it puts a strain on other body parts which in turn start complaining.  If their complaints are ignored too long then they malfunction in some way making them the center of attention and resulting on other areas adding their voices to the mayhem. Let one little area get off track and the precarious balance we count on for health and happiness comes tumbling down.
That’s not only true for health but also everything else in life.  Too little sleep, too much food, not enough water, too many activities….  Too much or too little of anything and our world tilts.  Reminds me of the advise I’ve received so often, ” Practice moderation in everything.”  It’s good advise.
As a caregiver finding balance is very difficult.  Maintaining balance seems almost impossible.  Just when I think I’ve got it all under control, something changes.  I get a new project with a short deadline at work.  Lynn’s health gets worse and he needs more attention.  One of my kids has a problem or is reaching a milestone in their lives that I want to share. I know that’s true for everyone but for caregivers I think it’s even more difficult to manage.
So much of our lives are not under our control.  We manipulate events to handle them the best that we can, but I don’t think we have much control.  I’ve found, in fact, that the more I try to control, the more depressed or overwhelmed I get.  When I’m smart, I recognize that fact and turn it over to God to manage.  When I don’t turn it over right away, then I just suffer longer and finally have to go there anyway.
Being a caregiver has convinced me more than almost anything else that I’m a created being and that my world was likewise created.  The very fact that imbalances wreak havoc tells me that something with intelligence had to have put this all together. I’ve looked at mud puddles and they aren’t very smart.  They just sit there and let things fall into them or they dry up and go away with the sun’s heat. Therefore, I cannot believe a glob of goo millions of years ago suddenly came together to create any of the things I see before me today.  Same goes for a big bang…I’ve seen fireworks and all that comes from them are sparks and maybe a fire if they’re too close to trash.  It takes a whole lot more faith to believe in either of those theories than it does to believe that a rational, intelligent being created man and this earth.
Enough on that soapbox…it’s just that I realize how complex life is when I see how a small wound, a change in lab values, or too little rest can throw us off-balance.  It makes me appreciate having a routine and the common sense to realize that having “enough” is enough.
I WISH YOU ENOUGH
I wish you enough sun to keep your attitude  bright.
I wish you enough rain to appreciate the sun  more.
I wish you enough happiness to keep your spirit  alive.
I wish you enough pain so that the smallest joys  in life appear much bigger.
I wish you enough gain to satisfy your  wanting.
I wish you enough loss to appreciate all that  you possess.
I wish you enough “Hello’s” to get you  through the final “Goodbye.”
– – – written by Bob Perks, P.O. Box 1702,  Shavertown, PA 18708-1702, USA

The Caregiver's Prayer by Kelly Combs

The following Caregiver‘s Prayer appeared in a local church’s newsletter recently.  Lynn’s aunt shared it with me and I contacted Kelly, the author, to see if I could share it with you.  She graciously agreed. I have included her bio below as well as the introduction to the prayer and the prayer, itself. I hope it blesses you as it did me.
Kelly Combs wrote this poem for her father, who has been a dedicated caregiver to many, and is currently caring for his wife who has Alzheimer’s. Kelly writes a devotional blog at www.chattykelly.com.

The Caregiver’s Prayer

By: Kelly Combs

Being a caregiver is hard. Whether it is your aging parents, a sick spouse, or another chronically ill person, the weight can be overwhelming, even as it is done in love.  We can’t do it alone, but when we partner with God, His strength can sustain us. I hope this prayer blesses those of you at Fairmount who may be caregiving, or know someone who is a caregiver. Please feel free to share it.
Dear God,
I’m feeling overwhelmed. I don’t know what to do. I’m tired Lord, the work is hard, and so I come to You.
My role here isn’t easy, but it’s one I wouldn’t trade. I know I’m following Your will, but my strength’s begun to fade.
You said Your yoke is easy, and that Your burden’s light.
I need to rest my soul in You, and lean on You tonight.
I pray for peaceful, restful sleep; to wake fully restored.
I hope that’s not too much to ask of You, my precious Lord.
I pray that You renew my strength because in You I hope; Then I will soar, and not be faint, and You will help me cope.
You modeled loving-kindness, teaching us to be like You.
That gives me the strength to care. I know it’s what You’d do.
So I will keep care giving, on the bad days, and the good.
I’ll love the way You love me, treating others as I should.
Please bless the one for whom I care and hold us in Your hands. Together, with You, we will make a strong cord of 3 strands.
And when I get to heaven, and stand before Your Son,
He’ll call me faithful servant and say to me, “Well done.”
– Amen

Just Sharing

Usually I have a theme for my posts, but not so today.  Instead, I just want to share what’s going on in my life because life doesn’t stop for a caregiver; it just gets busier and busier.
Lynn:  He has started to feel better from taking his Rebif. Hallaluyah!  It only took a year.  Though he still has fatigue, it’s much better; except for this past week. For some reason when pollen comes out each spring, it really hits him hard.  He needs about 25 squirts of saline mixed with nose spray every time I enter his room and sometimes twice while I’m there.  He has felt very tired all week and rather depressed. The depression leads to impatience and irritability so my tolerance has been stretched as well.  He seemed better today so I hope he’s getting adjusted.
Eli 146My grandson, Eli:  Poor little guy has been labeled with “failure to thrive.”  He’s 10 months old and the size of a five month old.  He has not gained height or weight in several months. He will only drink 2-3 ounces of breast milk at a time and if he eats solid food, he breaks out in a rash.  The GI specialist says his tummy probably has the same type of rash inside as he skin outside and so it hurts him to eat. He’s on an formula that has been added to the breast milk and it smells bad and must taste bad because he pushes it away as soon as he tastes it.  We’re trying to get him to drink at least as much as before adding the supplement but he’s really fighting it. If this is not successful, he may need a feeding tube.  It’s very frustrating and anxiety producing for his caregivers but the little guy is just as happy and loving as he can be! His smile is infectious and he’s a joy to be around. 
His mom, my daughter:  She bent over a chair Monday and broke two ribs!  She also broke her ribs bathing Eli when he was about two months old so now we have the added concern of why are her bones breaking so easily?  Bones don’t usually break unless an unusal stress or intense pressure is applied. She just leaned over the chair.  So, she’s having all sorts of lab work done plus a full body bone scan and a bone density test to figure out what’s wrong.  Though they do not suspect cancer, bone tumors or bone infection can be the cause of such breaks.
While she goes to the doctor, I keep Eli and Lynn.  A typical hour from such a day:
     Lynn:  “Sweetie, I need to pee.” (I pick up the baby, settle him into something he can’t get out of, cath Lynn and deal with whatever else he needs.  Meanwhile, baby gets fussy.)
     Eli:”Mamamamamam, (squeal), dadadadad, (whine)” hands reaching up, whining getting worse; he’s rubbing his eyes and needs his bottle. (I settle Lynn, go heat up the bottle, with Eli crawling around my legs begging for his milk that he wants THIS MINUTE)
     I rock Eli to get him sleepy so he won’t fight eating.  As his eyes start to shut, I remove his pacifier and stick in the bottle. Success, he eats 2 ounces.  I try it again in a few minutes- another ounce-and that’s all he will take.  I finish rocking him to sleep (he’s a very light sleeper; if you move he wakes up and is ready to play) I start to fall asleep (I’ve only slept six hours so I’m always tired) and after about 20 minutes, I hear:
     Lynn:  “Sweetie, I need to pee”  and we start over.
      I never ends…
My son:  He’s getting married on Friday at our house and having the reception on Saturday at our house so Lynn can attend and have a place to rest. So my house is covered in flowers and wedding preparations and every spare minute I’m busy working on something related to the wedding.  I’m taking next week off from work to get it all done because I’m WAY behind. I don’t even have a dress yet!  But I’m very excited and happy for them both.  It’s been a lot of fun helping them put it all together.
Me:  I’m seeing a surgeon on Monday.  My right thumb joint needs to be replaced.  I can’t really put it off any longer.  It’s painful all the time, I can’t open anything with it, I can’t grasp anything so I need to get it done BUT, what am I going to do with Lynn? I’ll need some respite care of course but I won’t know till I see the surgeon how long I’ll be unable to use my hand.  Ugh….I dread dealing with his needs more than I dread surgery for myself.  I don’t know how I’ll afford the continuous care but I’ll need to see if we can get help for 24 hours because I can’t cath him with one hand nor can I transfer him into or out of bed with one hand.  Wish me luck on this one.  May take several weeks to work this out.
My work:  busy as usual, still needing me when I’m needed at home. 
So as a caregiver, I find there are many ways I need to provide care and to many people. Lynn and my daughter for their medical needs. Eli for medical and baby care.  My son for sending him off into the world with his own family.  And myself. 
Who takes care of me?  God.  He provides me with what I need, when I need it and thank goodness for it.  
PS:  All prayers are welcome!

When is a Nurse Not a Nurse? When she's a Family Caregiver.

My first career in life was as a registered nurse.  I graduated in 1978 with a diploma in nursing and obtained my BS in 1980.  I was fortunate to have a position that allowed me to learn lots of new procedures that I would teach to others so I had exposure to all types of products, procedures, and knowledge.  Though I left nursing after my first child was born to begin a new career, I kept abreast with many of the changes. I even did home health care for a while as a second job.  I fully believe that God used those experiences to prepare me for my current role as a family caregiver.
We have had a home health nurse overseeing Lynn’s wound care for several weeks now.  I was telling her last week, that we really did not need her anymore because the pressure ulcer is nearly healed.  All I had needed her for anyway was a consultation to make sure I had the supplies I needed to care for the wound.  I could not get them as a family member but I could if I asked a home health nurse to get an order for them.
It’s been a bit frustrating at times being a nurse but unable to “be” a nurse as a family member.  When Lynn was in the hospital I assisted with all his care except managing machines.  I was unfamiliar with those so I either left them alone or had someone teach me how to manage those too (not something they would usually do).  I would do my own assessments of his body and vital signs and consult with the medical team regarding what they observed.  I still do that.
When I call in to the doctor, I have already taken vital signs, I give sizes and descriptions of skin breakdown, I describe sounds or smells that indicate problems, I have “home” kits that I use to determine if infections are developing.  I do all these things and his doctor’s trust that I know when something is wrong and they listen to my recommendations.  I am truly part of his care team.  However, because I am the spouse, I cannot “order” supplies except through home health.  I cannot get reimbursed for care provided such as wound care because I’m the spouse.  The home health nurses have not once done his wound care.  I do it.  I tell them what I’m using, what I think is going on, how it’s healing, what supplies I need, and they go along with what I say.
Not so with insurance companies.
If there is a family relationship, you lose all credibility with them.  I get “stripped” of my license when I try to justify care needs.  So I’ve learned to get what I need by getting an order for home health (which is a waste of money for the insurance company since I could easily do this without them paying for a home visit). Just another problem that exists in our health care reimbursement system.
…Just like not paying for preventive care….don’t get me started on that!
There’s another time when a nurse is not a nurse when she’s a family caregiver; that’s when she tries to tell her spouse what to do.  I have so many times told Lynn he was developing a “condition” of some sort.  I would warn him that he needed to go to the doctor to get such and such.  However, he won’t go until the situation is so bad he’s in pain or can see for himself that it won’t heal alone.  I get no credit for what I know.  Yes, I’ve “told him so” a few times now and he even admits that he needs to listen to me but there’s something in his ego that just won’t let him take directions from me.
I also realize that as a family caregiver, I’ve become his enabler.  I realize that he would probably have more “abilities” to care for himself if I was not here to do so much for him. When he’s tired, he just won’t “do” for himself. He calls me.  If he was in a facility or had someone who was not family caring for him, he would likely have to do it himself or not get it done. He would not be happy and he might have long waits, but I often wonder if I’ve done him harm by always being there to help.  On the other hand, I know that if I had not been there to watch over him, he most likely would have not lived to this point because I have caught and/or prevented so many medical issues for him before they became serious.
So, my medical background is a true blessing from God.  He’s provided me with the knowledge, skills, and abilities to care for the husband He gave me.  Though He has not led me to “be” a nurse, He has led me to “be” His healing hands for Lynn.  For that I am very grateful and we are both truly blessed.

"I Know Someone With MS…"

When I tell friends, family, acquaintances, etc. what I’m up to these days (i.e., being a full-time caregiver for my husband while working full-time from home) it’s amazing how many people either have someone with MS in their family or know of someone with MS. What’s even more amazing, however, is how different each of their stories are.  Often how someone views the condition is directly related to who they know that has it.  For example:
“My friend’s sister has MS but they’re fine”
In this situation, they really have very limited information about MS because as we know, no one who has MS is “fine.”  Each MS victim struggles with something periodically, especially during periods of stress. Often they battle fatigue, heat sensitivity, weaknesses in functioning in some aspect of their lives either full-time or temporarily. So if the person you are talking to only knows someone who is “fine” then they have difficulty comprehending the nature of the condition and the potential restrictions imposed and may even wonder, “what’s the big deal?”  They just don’t get the condition.
“My cousin has MS and has to use a cane.”
If they know someone who has mobility issues, then they seem to have an idea that someone with MS has struggles to overcome on a regular basis.  They understand there are special needs and often associate MS strictly with mobility challenges.  Often they have no idea that MS can affect any function of the body either completely sabotagizing it’s ability to react normally or at the very minimum, creating an annoyance on a regular basis.  They have no idea that a person’s bowels, bladder, eyesight, memory, sensory stimulation, hearing, speech, eating, …you name it… can be affected. There is much they do not know but they at least have some insight.
“My sister has MS. What an awful condition.”
Once it’s in the family though, they realize just how devastating the condition can be.  They understand that the person with MS struggles each day to be “normal” to be able to have a “normal” day and fit in like everyone else. They realize that one minute the person may be fine but the next they are so exhausted they can hardly function and where before they could walk alongside someone, once they hit that point that fatigue takes over, they rarely can keep up. They know that some days they feel like a heavy weight is sitting on their shoulders and other times they are optimistic and hopeful.  They know that each new “odd” sensation raises the question of, “Is this an exacerbation?”  “If it is, how bad will it be this time and will it go away or linger?”
I see one of my roles as an MS Caregiver to be that of educating others. In the grocery store, at work, wherever I meet someone who asks about Lynn and his condition, I try to clear up misperceptions and provide insight into what MS is all about and most importantly, that it’s different for every person they will meet.  No two people with MS seem to be affected the exact same way.  Each MS person knows they are unique in their personal struggles but at the same time they are a member of a larger community who has to learn to cope each day with what that day brings. 
That’s one of the reasons why I write this blog, too.  I want those who read it to know there are common struggles but each person is unique. Don’t look at Lynn if you’ve just been diagnosed with MS and believe you will be wheelchair dependent and unable to fed yourself in less than ten years after being diagnosed because that is probably not the case. I tell anyone who listens that the only way to deal with MS is to take each day and each minute in that day for what it brings in that moment.  Don’t look too far ahead or focus on what was left behind; just do your best with what you have that day and keep the faith (literally) that God will give you the strength to carry on through one more day and one more triumph.

Supporting Lynn in his Work

One of the many challenges I face each day is how to devote the time needed to meet the obligations of my employment and give Lynn the care and attention he needs.  I’ve found that whenever he calls me back to his room for assistance during the day, if he’s tired (and what MS patient is not tired most of the time), he will say, “while you’re here, would you ….” Often that request is related to typing an email response for him or copying something off a web address.  Therefore, I find that in addition to my own job, I often am assisting him with his.  Recently, though that has gotten better.
My daughter has decided to be a stay-at-home mom.  That’s great news and I’m pleased that she wants to do that.  I think it’s the best possible world when Mom can stay home with the children.  That being said, in this economy, it also frightens me that she and her husband will not be able to make ends meet.  I pray for them often that they will find a way to be successful in what they have chosen.  While it’s nice for them, I’ve also discovered it’s going to be nice for me. 
Currently, Lynn’s son comes on Mondays and Fridays for a few hours to help him work out and he’s occasionally been helping him, as well, with typing.  On Thursday’s Suzie comes for a few hours and helps him with his marketing and typing.  Now Sarah will also be available a few hours a day on the days he does not have anyone else coming.  That means that he will now have a secretary, so to speak, five days a week who can help him with his manuscripts, internet research, marketing, and email responses. Isn’t that great? It really takes a burden off me to have this available.
There are still some things though that I do for him that he doesn’t want others to do.  For example, Harper Voyager is accepting unsolicited manuscripts during the first two weeks in October.  What an opportunity for Lynn!  As a new author it’s very difficult to get published because many publishing houses will not accept unsolicited manuscripts.  They want them to come through an agent but an agent is difficult to get if you have not been published.  That’s why you hear of more people being self-published these days.  Lynn’s first novel, Rising Tide, was published by Tate Publishing and they were great but Harper Voyager specializes in fantasy/Sci-Fi/supernatural fiction which is his genre.  If they selected his manuscript for publication, they would already have a built-in audience to market the book to.  (all prayer support on that front would be appreciated)
When he learned of this opportunity, he immediately dusted off the manuscript for this second book.  Though his second book had been written, it had been a while since he had looked at it.  When this opportunity came up, he, of course, wanted to take advantage of it, so he began tweaking the manuscript.  Though he writes the books, I edit them, so this adventure was a project for both of us.  Last weekend I stayed up nightly till 3 a.m. editing the book (that’s why I had no blog last week).  We submitted it on Tuesday and I must say, it’s a good book.  He’s done an awesome job with it.  Originally, I thought it was a little weak in some areas but now it’s action packed and flows well. I really hope they choose it as one of their selections because it really is good.  
Though he’s the writer and the books he creates are his projects, I’m blessed to be able to be part of it.  God opened a door for him when he became disabled to allow him a new career.  It’s certainly not an easy career but it’s one that he can do from home when he has the energy to do it and now He has provided Lynn (and me) with the resources to help him participate in his career choice on a regular basis.  It’s so important for someone with MS who is totally disabled to feel productive and useful and to have a job to get up for each day as well as goals to pursue. I think that without that drive to produce, the person is more likely to decline in his/her health and abilities.  God gave us work because we need to feel productive and I am so glad that Lynn has found his new career and has a job to do. 
So keep your fingers crossed that his manuscript for Eden’s Wake is selected for publication.  We might not know for two-three months.  We were told if no news by three months, it was not chosen so we could learn the status by default.  If you like adventure fantasy, take a look at Rising Tide.  It’s a very good read and even was selected as a finalist in the National Indie Excellence Book Award for 2012.  Keep your fingers crossed for us!

God's Blessings

Often my journal entries discuss the challenges of being a caregiver but today I want to share a blessing–my church family.
Before Lynn was diagnosed with MS, he and I were very involved in our church.  We both were in choir; I helped produce drama enactments to support the sermon;  Lynn played drums for the praise band; we both played  hand bells; and we both were in dinner theater productions.  Three years ago, Lynn had to drop out of most of the activities he did due to fatigue and loss of coordination and strength.  Two years ago, I had to drop out due to my need to be home to care for him.  Since December 2010, neither of us have been able to attend church but are blessed to be able to attend through listening to the sermons on the church’s internet site.
Though we were well-known when we attended, there were many people who did not know us when we attended and I am sure that there are many more who have never met us or had any contact with our family since we had to stop attending church.  I share that fact to emphasize that the blessings we receive from our church are not due to a family connection or special relationship.  No, the blessings we receive from our church are due to the outflowing of God’s love for us through them. I think you will agree when you read what they have done for us.
First off, we are on the prayer list regularly and we get uplifting cards for all occasions and sporadically throughout the year telling us that we are being thought of, prayed for and remembered.  That is such a comfort when we live our lives in somewhat of an isolated fashion.

  • When Lynn started having difficulty walking, a group of men put in a ramp on the back of our deck so he could come in and out using the wheelchair instead.  Without that ramp, he would not have been able to leave the house for medical appointments much less any other trip.  The labor and supplies were provided by church members.
  • We asked who in our church could advise up on getting a handicap shower installed.  Within days, a shower had been ordered and two men from church installed it.  Not only was the labor free but the shower was provided by donations from the church members.
  • When Lynn was in the hospital two years ago and I was depressed because I could not decorate for Christmas, a group came over and decorated our home.  Not only did they decorate, but discovered that our refrigerator was on its last ice-cube and they got us a nice second-hand one that works wonderfully (without multiple containers to catch the leaks it produces like my last one.)  Last year several people came over once again to help with putting up decorations AND taking them down.
  • Groups have come over to rake leaves, mow grass, clean up debris after storms, and do all types of yard work.  One group came and tore down an old play house and a fence that was falling down.
  • One of the angels from our church cooks for us each month.  She fixes all of Lynn’s special diet meals and freezes them in individual containers so all I have to do is thaw out a meal when it’s time to feed him.  You can’t image (or maybe you can) how much I appreciate not having to take the time to prepare those meals three times a day.  Several members contribute to the cost of the food she prepares so that most of what he eats, doesn’t cost us a thing.  There is another Sunday school class that brings us bottled water every two weeks.
  • One of the members comes each Thursday to help Lynn with his writing (typing).  She helps him write his blogs or chapters in his book or whatever other correspondence he needs to get out so I can concentrate on my work.

If the church finds out we have a special need, they take care of it or at least help us find a way to meet the need. Every once in a while we even receive donations to help us with some of our expenses (which you know are a lot if you’re caring for someone with special needs.) I know there is much more they have done than I have listed here.
In fact, what lead me to write this was what happened while we were on vacation.  We came home to a house that had a new coat of paint, a newly stained deck, and fresh landscaping for my azalea beds!  A group got together to spend their time off this past week painting our house while we were on vacation!  What a blessing they have given us!
Our church, Gethsemane Church of Christ in Mechanicsville, Virginia, (http://www.gethsemanechristians.org/welcome/) is a God centered place of worship.  Their mission to follow Christ faithfully through word and deed and to demonstrate Christ’s love through action.  The blessings they have provided our family are not unique to us.  They have done the same for many other members.  If a member has a need, they try to help.  They are not a wealthy church or a large church; they are a rural community church made up of average people who love their Lord and each other.  We are truly blessed by their generosity and faith and by the Lord that they (and we) serve. 
I wanted to publicly thank them for their love and support over the years.  As a caregiver, I can’t do it alone.  As a person with MS, Lynn has much he cannot do.  But through the love of Christ demonstrated through these saints of the Lord, we are truly blessed each and every day. 
I hope you are fortunate enough to have such a church family as well.  Their actions are not about religion or a particular faith-based group but are instead a commitment to the Lord Jesus Christ, our savor, and our healer, who never forsakes us and who will be there for anyone who chooses to be his follower.  Thank you, Lord Jesus, for being there for us.

911-Do you do catheters?

One night this week, just about bedtime, I became very nauseated and started feeling really lousy.  It had the feel of when I’m about to have an allergic reaction to something.  I have lots of food allergies and I often find out about a new one though several hours of agony and being tied to the restroom.  I thought it might be that or food poisoning.  Fortunately, it turned out to be neither but it sure gave me a scare.
I, like most people, hate to be sick.  It’s miserable but usually if I have someone to bring me things, I just stay put in the bathroom, often on the floor on a blanket, till it passes.  As I was contemplating possibly having such a night I went between dread of being sick and panic as to what was I going to do about Lynn?
There were several issues.  The most immediate was that I felt like I couldn’t stay up another minute but still had to finish feeding him, giving him his nebulizer treatment, cathing him, and getting him ready for sleep.  With each request he made, I became more and more cranky and desperate to lie down.  I finally did, lying very still, breathing shallowly, and praying I would not be sick.  Thanks, God for granting that wish….
As I lay there in dread, the other struggle was what was I going to do if I did indeed get sick?
1.  What if I needed help?  Lynn is attached to a peddler at night so he can peddle when his legs get stiff. He could pull out of it but he also doesn’t usually hear me if I yell from the bathroom and he can’t get his wheelchair through the door to bring me anything.  Solution:  Take a phone into the bathroom with me.  Plan:  Get a phone for the bathroom permanently.
2.  He needs to be cathed several times a night.  He cannot urinate on his own. If I was too sick to move, who could cath him?  That’s where my mind went to 9-1-1.  I figure if a rescue squad could put in a catheter in an emergency, not being able to empty one’s bladder can lead to one, so the solution is to call 911 to get them to come put in a foley.  Did you know that if a person cannot empty their bladder that after a while they will go into shock?  The urine backs up to the kidney and then on toward overloading the heart and lungs.  It doesn’t happen immediately but it can cause a lot of pain and the shock comes long before the other parts. So I think 911 is a good option.
3.  If I’m sick for hours, I sure am not going to feel like taking care of him the next day. Lord, give me strength!  I know I would try to push through though.  I would certainly have to call for help I expect but there are so many things family and friends just don’t know how to do and I still don’t have an arrangement yet for intermittent nursing help.  Got to get back into looking for that again.
Just so much more to consider when someone is so dependent on you for everything they need.  I also know that emotionally Lynn would be devastated if I was very sick.  He gets so afraid if I seem to be sick or hurt.  He worries about me but he’s also very afraid of what would happen to him.  He says all the time that he would give up and die if I was no longer around to help him.  Talk about pressure…
Anyway, I dodged the bullet.  Whatever was wrong finally went away.  I felt yucky the next day but functional so it was a false alarm, thank God.  So once again we were blessed to avoid another crisis and managed through what we had.  Aren’t we fortunate to have such a caring God to take care of us that way? 
Yes, we are….

The Blessings of Children

Elijah Gregory moments after his birth

May 27 at 3:51 p.m., my daughter gave birth to a beautiful son, Elijah Gregory–Eli for short.  I was fortunate enough to share in the experience with her and her husband and at the moment of Eli’s birth, my daughter weep tears of joy, as did I. 
The decision to have a child was not easy for her.  Though she does not have MS, she has a chronic health condition that has dominated her life (and mine) since she was five years old.  The condition has required multiple medication adjustments, much lost time from school and work, and interfered on more occasions than I can remember, with being able to enjoy plans made.  It made her different from her peers, which created many difficulties for her as a teen.  There have been many tears and many discussions about the quality of her life…but we made it through those times.  Her condition is now controlled on medication that she must take every day for the rest of her life and it still is a factor in all her decisions but she has matured into a beautiful and kind young women, with a deep sense of responsibility, and wisdom beyond her young years.  She is very fortunate in that she also has a very devoted husband who is unbelievably understanding and supportive of her.  Now he has taken over my role as her “rock” and together they face their future.
I share all this as background for her decision to have Eli.  She knew her pregnancy would be difficult and there was a risk that the medications she was on could cause birth defects (thankfully that does not seem to have happened) so she worked with her doctors to prepare her body, her mind, and her spirit to take on the challenge of having a child.  For her that decision was the right one but for some people with chronic health conditions, the prospect of reproducing and sentencing a child to the same possible condition is not something they can do.  Neither decision is wrong; both decisions are right…for those individuals.
As for my daughter, she has a strong faith in God and has learned to rely in Him to help her through the difficulties of this life.  Though she certainly does not want to invite hardship, she also knows that her strength comes from the courage He has given her.  Her life experiences, though very difficult, have prepared her to face what may be ahead since she probably won’t know if Eli has her same condition for several years yet.  However, if he does develop it, who better to help him through it than his mother who can not only empathize but coach him in how to cope with it?  That is true for any person thinking about having a child that might inherit a serious condition.  There are some conditions, that I am sure would cause her (and me, too, if faced with the choice) to decide to adopt.  In fact, she may decide to do that next time.  But it’s okay either way.
My step-son knows that he may very well develop MS as he gets older.  His father and grandfather both had it so his changes are significant. When he asked his girlfriend to marry him, she and I talked about their having children.  They are fully aware of the risk of inheritance and that he may end up as his father but we also know that new medications and treatments are always in development.  BECAUSE of his father, he’s prepared.  He knows what things seem to reduce the risk and what to stay away from; he knows the symptoms and when to seek evaluation; he will know what to do if the time comes that he has to face the prospect.  Plus, like with my daughter, he will know that his father and I are here to help out anyway was can and that God will bless them whatever the decision regarding children may be.
I belive that each challenge we face in our lives prepares us for what lies ahead.  We gain strength, knowledge, and courage with each obstacle we overcome.  Life is hard…no doubt about it.  I truly wish and have prayed often that these burdens be removed from Lynn and from my daughter and that He would protect our other children from them as well. However, I know that we are not alone.  I know that this time on earth for us is like a speck of dust compared to eternity in heaven.  I know that although we have trials and difficulties and get depressed and hurt that I love this life we have.  I feel so blessed to be married to Lynn and to have two wonderful children of my own and an awesome stepson.  I love the partners my children have chosen to share their lives with. I can’t wait to spend time with my grandson and to share with him all we have learned that might be helpful to him on his journey through life.
I am very thankful my parents decided to give me life.  I am very thankful that God blessed my decision to have children.  And now I’m thankful that God has given my daughter the courage to face the unknown and to share her love and commitment to Christ and to her family with a child.
Yes, for me and my family, having children is truly a blessing for which we are thankful.

Sometimes I Feel Like I will Explode

Pressure.   So much pressure.  …but where does it come from?  Me or “them?”
This has been one of those weeks where I have felt I was under extreme pressure all week.  The week started off with me getting up early on Monday for a conference call that wasn’t actually scheduled till Tuesday.  I needed to get up early anyway in order to have the four hours I need to get ready before I go into work for meetings so it was actually somewhat of a relief to have gotten the date wrong but that meant also getting up early the next day…which I did.  “Issues” started flowing in from work Tuesday afternoon and I haven’t had a break since….
My job can be very intensive.  I coordinate investigations, consult on workplace conflicts, and generally give advise on how to address problems.  Often participants are very emotional and the consultations are intense.  I have to be “on my game,” able to listen for variations of the truth, able to see through smoke screens to the facts, able to determine what laws apply and what solutions might work in a situation based on personalities and behaviors that I rely on others to describe.  Therefore, I need to concentrate on what is being said, how it’s being said, and what is not said to make sure I manage a situation effectively.
Now imagine this…I’m on a speaker phone attending a conference call about some highly emotional issue.  I’m multitasking at my desk, looking up information, referencing reports, taking notes, and planning strategies with the people on the line.  Over the baby monitor on my desk, I hear, “Donna I need to be cathed.”  So I take the speaker phone with me, mute the line, glove up and take care of business, never missing a beat.  Then he mouths, “I need nose spray,”  so I apply the spray, then as I put down the spray, “can you make me some tea?” I continue to carry on my conversation and go make the tea. When I deliver it, his foot has come loose from the stirrups in the peddler so I fix that, his socks need to be pulled up and his shin needs scratching.  I finish all this, still on the phone and go back to my desk.  Fifteen minutes later, “Sweetie, can you come here?” and it starts again.
Some days I do okay with this pace; other days I don’t.  When the issues are intense or the stakes are high, I feel intense internal conflict between who gets my attention at that moment. So far, I’ve managed to juggle it all– I can multitask like you wouldn’t believe, but the pressure is getting to me. Several times this week, I’ve just felt like I could not keep going like this.  I would love to quite the dual role.  I would love to go back to work and have someone else be the caregiver for a while but I can’t afford to do that.  The cost would just be too much so I keep going. I admit there are times I almost wish I would get injured or sick so I would have an excuse to stop for a while.  If that would happen, then insurance would pay for a temporary caregiver at least and the decision to stop being a caregiver, even temporarily, wouldn’t be mine to make.
I am very fearful that eventually I won’t be able to keep up the pace.  What will happen then?  We have a little savings but that would not last long if full-time care was needed.  If we lost most of our resources, then we would be eligible for assistance but I don’t want to lose nearly everything so I can get some help.  If I quite my job and worked part-time, we could not pay our bills.  Lynn could go into a care facility but I couldn’t (not that I ever want him to have to do that) but if that happens, what happens to me, the caregiver, who has burned out, lost their income, lost their home, lost their savings? 
I’m getting morbid and over-dramatic but it’s these type of thoughts that cause the pressure.  I don’t want my worst fears to happen. I don’t want to lose our home or to have to put Lynn in a care facility; nor do I want to lose my job (believe it or not, I really like what I do).  So I feel pressured…pressured to do my best at work so I don’t let down my colleagues; pressure to do my best for Lynn because I love him and am committed to him; pressure to try to be a supportive mother and friend; pressure to make it all work.  Where does this pressure come from?  From me. From my own expectations.  From my own demands to do it all perfectly.
So maybe what I need to do is go find a pin…I think its time to create a small leak.  Just a little leak to reduce some of the pressure; not so much as to make me explode or deflate entirely… just enough to stay afloat like a balloon that has lost its elasticity and becomes almost puncture proof.  That’s my goal. To become a low pressure, rubbery balloon. Sounds good doesn’t it? Or better yet, I guess I just need to turn it over to God and let him handle it because it’s just too much for me right now.  So….God, this is Donna.  Here… it’s yours.  Thanks and Amen.

Virtual Support Group by Skype?

  When I first started this blog, my intent was to create a virtual support group; a place on-line that people, like me, who could not get away to attend support group meetings could get together on-line.  While this blog has allowed me to make many new friends and to gain support periodically from each of you, it doesn’t allow for that “personal” touch.  But I have an idea that might just work….let me know what you think.
Have you ever heard of Skype?  Skype is an online phone service that is free and allows you to both talk to and see whom you’re calling. Lynn uses it to speak to book clubs about his book and while it’s not always the best picture (depends on the equipment being used of course), it allows you to meet the people on the other end of the conversation.  Skype also offers an option for video conferencing which enables the subscriber to have multiple pictures of callers up at the same time.  There is a fee for this but it’s only $10/month if someone wanted that option.  See where I’m going with this?
If enough people were interested, we could have a virtual support group of caregivers.  From the location of our own home, we could reach out from across the country or even overseas to meet each other and share a “real time” conversation.  By getting together on-line in this manner we could attend a support group while still caring for our family members.  Many laptops now have webcam capabilities built in but I’ve looked into buying a webcam and you can get some good ones for less than $50.  Skype has some listed as five stars that are around $25. I’m very technology illiterate so I may be missing something that would not make this possible, but I don’t see why not? 
If you’re interested, I was thinking maybe once a month, on a Saturday afternoon, we could designate an hour to talk about whatever is going on that month.  I’m not a therapist or a counselor so this would not be a therapy session; just a group of caregivers who share a common challenge who get together to encourage and support one another.   I don’t know if it would work but I think God put this on my mind as an option to reach out to support people in a more personal way.  I would still do my blog but this would be a separate project.
So, what do you think?  If you’re interested, let me know.  If there’s enough interest, I’ll buy the subscription to Skype for group video conferencing.  I think you could call in and just view me if you only want the free subscription or if you also subscribed to video conferencing, you could see everyone else who calls in. I’m not sure about that though but it makes sense that you could.  So give it some thought and we’ll see if there’s any interest.  I’ll get back to you in about a month to let you know if there’s enough interest and when the first meeting would be.
Be “seeing” you soon?

Financial Support for Home Care

I’ve been thinking a lot lately about respite care.  I was asked to participate on a committee to look at creating a voucher program in Virginia for caregivers to obtain a small amount of financial assistance so they could afford respite care. I think the idea is wonderful.  So many of us need a break but don’t have close friends or relatives who can provide relief or don’t have insurance that will pay for it.  Unfortunately, funding will be limited and the need is great so many people will still have needs that will go unmet.
I was a consultant on the Committee, essentially one of the voices of those in need who could offer comment about the direction the plans were going.  As I listened to the experts discuss which resources currently available would be the best to contact as sponsors or how would those who need assistance hear about it, I realized just how lost most of us are in trying to figure out where to go and what to do.
I think of myself as being pretty knowledgeable about healthcare and medical systems.  I have a nursing background, though it’s been years since I practiced, and I work in a hospital so I’m familiar with how healthcare works.  However, I’m totally lost when it comes to knowing what to do about getting financial assistance or respite care.
When Lynn first started having difficulty getting around, we decided it was time to apply for Social Security Disability.  That was a 12-month struggle of filling out forms, getting rejected, researching the rejection reason, applying again, getting rejected again, appealing again, etc. until we could go before a real person.  Once we were able to see a judge, all he did was ask when Lynn got as bad as he was and approved the disability. (by the way, I did this myself without a lawyer so it can be done but it takes a lot of time to do it).
Naive me, I though, “great, he has disability now.  Finally, we will get some help.”  Wrong..though not totally.  He does get a monthly income now, much less than he used to earn when he was working but it certainly helps.  I thought; however, that he would also get medical care immediately.  I had no idea there was a two-year waiting period before he would be eligible for coverage under Medicare.  We were fortunate that I had insurance and had him on my policy.  What does someone who is totally disabled and unable to do any work do for two years without insurance?  Doesn’t the government realize that the cost of self-insurance is outrageous if you have a disability IF, and that’s a big IF, you can even get coverage!  Most people would be denied if they had to start from scratch in getting insurance and if you HAD insurance but lost your job and had to use COBRA to keep it, many people could not afford that cost either. It just doesn’t make sense to me that Medicare has a waiting period once disability is approved.
So we waited somewhat impatiently for Lynn to be approved for Medicare.  Again, naive me, I think, “great, now I can get some home care assistance.”  Wrong again.  Medicare Part A, which is free, only covers inpatient care.  Medicare Part B, cost a monthly premium which is higher than the cost I pay if I keep Lynn on my insurance at work.  So having Medicare does us absolutely no good unless he gets hospitalized. So I’m back at square one, my insurance doesnt’ provide for home care assistance on an ongoing basis so if I want someone to care for Lynn while I go into work, I have to pay for it myself, and from what I can tell, “it ain’t cheap.”
Someone told me I needed to apply for Medicaid for him.  Apparently there is some type of waiver program that provides financial assistance to caregivers who take care of family members at home so that the person does not have to be hospitalized.  So now I’m trying to find out about this waiver program with Medicaid; however, the best I can tell, Lynn doesn’t qualify. I may not be reading this right but it seems like the person has to have a monthly income less than $2000/month, which would qualify him but the person also cannot have any savings greater than $2000 which disqualifies us.  When Lynn lost his job, he had a retirement savings account that is more than $2000 plus all our assets are in joint accounts.  While we don’t have much, we usually do have more than $2000 on hand so that we can handle emergency  repairs and purchases.  These days if a car breaks down, or you need a new well (we spent $5000 putting one of those in) or new appliances, or any number of things, you need to have some money readily available.  Plus if I were to be out of work for an extended time, we would need some money to fall back on.  We just can’t afford to get “poor enough” to qualify for assistance.
It’s basically a catch-22, if you’re already poor, you can qualify for assistance, but if you’re not totally poor and only need help to supplement, rather than totally support your existence, there is nothing available.  Financial concerns is one of the main reasons I’m hesitate to hire someone to stay with Lynn.  I’m sure anyone who can provide the type of care he would need would charge around $20/hour.  There is no way I could afford paying someone 10 hours a day (I work an 8 hour day plus I have an hour travel to and from work) for five days!  That’s $1000/week or $4000/month.  I could probably get someone for half that amount if all they did was served as a companion but that would mean I would have to do all his physical care before or after going to work and have to keep an indwelling catheter in him which would make him prone to urinary track infections and increase his risk of hospitalization.
So until further notice, I’ll keep trying to manage a full-time job at home with help from family, friends, and God who always seems to meet our needs, one day at a time.  Anyone got any better ideas?

Multitasking

When I was trying to decide what to write about this week, I was having a hard time coming up with something unique.  I’ve touched on many of the hardships and challenges associated with being a caregiver but as I look out the window at all the new growth for spring, I am also thinking of all the benefits.
Some of the challenges we ensure also have benefits associated with them.  I realized early in my life of caregiving, actually when I was acting as both a Mom and caregiver for my child who had a chronic health condition too, that God prepares us for the challenges ahead without our realizing it.  It seems in looking back that each difficult road I’ve traveled helped prepare me for something ahead that would have been more difficult if not for the previous experience.  For myself, I find that God led me in a very unique way to prepare for where I need to be now. 
I originally trained to be a nurse.  My first nursing position was evening shift and I worked “the house” training other nurses in new procedures and helping out in all crisis events.  I learned a lot of skills, both nursing and interpersonal.  When my first child was born, my husband at that time wasn’t coping very well with being the one responsible for her care while I worked so I sought a day shift position.  I became trained in Infection Control, Employee Health, and eventually was the Director of Education and Training.  From there, I was asked to train in Human Resources so I could take over that department (this was obviously a small hospital).  I eventually stayed in the area of Human Resources but moved to another hospital and focused on Employee Relations and development of policies.  My role was primarily advisory in nature (over the phone or email consultations) and I learned the role technology could play in communication. 
As you can see, my nursing and HR training, as well as experience in use of technology put me in a position to be able to work from home so that I could provide care for my husband.  I can now consult with contacts by phone or email while I’m simultaneously assisting Lynn.  My job with my company is no longer 8:30 a.m. – 6:00 p.m. but is now 24/7 (24 hours/day seven days a week).  By working from home I access my emails and continue to work on projects between the times Lynn needs my assistance.  I’m a 24/7 employee and a 24/7 caregiver.  When you speak of multitasking…I’m the Queen!
I can be directing the action plan for a crisis while I am cooking spinach for Lynn’s diet and giving him his breakfast, all at the same time.  In fact, I would say it’s pretty rare that I focus on one thing at a time.  I expect that is true for all caregivers.  Multitasking is a talent each of us has to develop in order to get everything done that we need to do. We each need more than 24-hours in a day but God in his wisdom realized that if he gave us any more, we would never get any rest!  I know if I had more time, I would just fill it up with more tasks.
Though multitasking is a requirement for being a caregiver, it’s also a blessing we have been provided.  It allows us to manage our lives and the lives of those to whom we provide care.  It makes us better employees and more talented workers.  We develop greater skill and stronger personalities.  The only down side is we tend to try to do too much at any one time and we forget to take time for ourselves.
I guess every challenge has a benefit if we seek it.  Sometimes we just have to look a little deeper to find it.

In sickness and in health…till death do us part

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.

Whose life is he living?

Last night I talked about the fact that I felt that I was not living my own life and that I was lost in the caregiving role.  Tonight I want to explore the other side–his side. 
Lynn sits up at night to sleep so that he will not wake me up to put him on his peddler when his legs get stiff.  He has given up sleeping in a soft bed until he can create a device that will keep his legs moving at night.  Therefore, when he wakes up he decides if he needs to be cathed or if it’s just stiffness that caused him to awaken. I’m sure he looks over at me sleeping comfortably in the bed under my covers and tries to delay waking me as long as possible.  Often when he does, I groan and ask, “are you sure?  I just cathed you at xxx.”  He is dependent on my getting up when he asks so that his bladder can be relieved.  His relief is contingent upon my cooperation and my timeline.
When morning comes, he lies down while I shower and eat breakfast.  Even if he is stiff and needs to move around, he has to wait until I am available to get him up.  His comfort is dependent on what I’m doing and when I can come meet his needs.  If he has an itch or gets cold and needs covers, he can call out for help, but he can’t take care of it himself unless I’m willing to be his hands.
When it’s time to get dressed, I pick out his clothes and dress him.  I often give him the choice of what to wear but putting it on so that it feels comfortable and fits right is up to me.  If the seams aren’t right or something is twisted and I don’t fix it, he has to wear it that way.  Ever worn a twisted garment for very long?  It’s very uncomfortable and annoying, but I can’t feel his discomfort so how do I know?
When he wants to eat, he has to wait for me to fix it.  I season it according to my taste which is nothing like his.  Though I try to match what he likes, I can’t taste through his taste buds so the flavor of his food is through my taste buds.
When he wants entertainment, unless the remote is within reach, he has to watch what is on until I can come change the channel or put in a new CD or DVD. 
If he’s cold or hot, he needs me to change the thermostat or bring/remove blankets to adjust his comfort level.  He’s anemic but I’m often hot, have a fan blowing, or lowering the temperature when he’s got bone-chilling coldness to handle.
I manage his medical appointments, often deciding with the practitioners the course of treatment.  I arrange his living space, take him where he needs to go, or buy what he needs to have–all of which is done according to my taste, my timeline, my skill level.  He cannot use his hands or his legs.  He cannot change his own position.  All his comfort is contingent upon my being able to help, my understanding of what he needs, and my willingness to do it.
As is true with each of us, inside ourselves we are still young, still able-bodied, still filled with the hopes and dreams we have always had only now that he is disabled, he is a prisoner in his own body that will not respond to what his mind still believes it can do.  In order to live his life, he has to live through me. 
So last night I was lamenting about living my life through him but he can lament the same.  We live our lives through each other…but then isn’t that what a married couple does anyway?  What God has joined together….well in our case, we are truly one.

Who Has It Worse?

When I run into coworkers, friends, family, people from church, etc., I can see in their eyes that they feel sorry for me.  Many say, “I don’t know how you do it, day in and day out. I don’t think I could.”
I don’t feel comfortable when someone tells me that.  I don’t feel like I need anyone’s pity or that we are a tragic couple.  I know that our lives are really quite good.  We get along very well.  We have wonderful family members both close by and far away who constantly support us and give us encouragement.  We have a church family that really walks the talk that Jesus proclaimed while he walked the earth.  I work for a compassionate supervisor in a job that is challenging and rewarding.  I have the best employees working for me that anyone could ever ask for. I love where I work and what I do.  We have enough–enough money to pay our bills, more than enough stuff as evidenced by the fact I can’t find enough places to put it all, and more than enough food as is obvious by our waistlines.  We have good lives.
Yes, our lives are hard at times.  Lynn rarely feels good. He is often uncomfortable.  He is needy at times, stubborn at others, often funny, and sometimes angry.  I almost never get to “sleep in,” or sit down to read a book or watch TV.  I never go out on my own to shop or visit or do anything that is not essential.  I watch every penny we have and the money going out is often more than the money coming in but not always… so it evens out. 
Lynn has a lot of physical challenges.  He has basically no use of his legs or right arm and his left arm fatigues by the end of the day.  Many of his bodily functions do not work well on their own and need some help along the way like urinary catheterization or a bowel routine.  It takes a lot of strength and energy to move him around and by the end of the day.  I’m often tired and sore but a good night’s rest and I’m fine to get back at it again the next day.
When people look at me with that sadness in their eyes and say they couldn’t do it, what they don’t understand is that we didn’t get where we are now overnight.  It was a progression of decline.  By stages his abilities got less and at each stage we learned to adapt.  When it’s gradual you have time to adjust and seek ways to make it better and …. find a new normal.  The people who wake up and suddenly can’t walk, or see, or hear; they are the ones who have it worse.  MS can do that to you.  One day you are fine and the next day you can’t see anymore. How scary is that?  You don’t have time to adjust, you just ARE.  Everyone is scared but trying to support the one who is now blind or deaf, or immobile.  No one has time to really adjust….  Suddenly your lives change and you’re thrust into a new reality.  Now that’s hard.
You know what else is hard?  When you’re caring for someone whose memory is fading.  Lynn occasionally has some cognition issues.  It’s usually just when he’s very tired or feels really lousy, but when he has asked me the same question three times in 3o minutes, it gets annoying.  I can’t imagine dealing with that over and over and over again and knowing that it’s going to be like that every day all day.  With Lynn, I settle him in one place and he has to stay there because he’s immobile.  I really feel for those whose loved one is mobile but not thinking clearly.  I would be afraid all the time that they would leave the house or start a fire or turn against me because they didn’t know who I was.  That’s got to be so much worse than dealing with someone who is physically challenged.  …..  or maybe not.
What I do know is this–whatever is your challenge…whether physical, mental, spiritual, emotional, or whatever it is; it’s your challenge and that makes it difficult and becomes your struggle and whatever that struggle is, it’s hard for you.  Yes, you can always find someone worse off than you are but in their shoes, they may look at you and think the same.  Everyone’s pain is real.  Everyone’s challenge is theirs and it’s just as difficult as the next person’s. 
So who has it worse?  We all do; each in our own way and each with our own struggles.  That’s why we need each other and God to help us carry on from one morning to another to another to another….
Ps.  Feel free if you every need to share to drop me a line if you don’t want to do a public comment.  Sometimes it helps just to share.
 
 

We Have Our Van!

Finally after two long weeks of going back and forth and back and forth with the loan  agent, we got approved for the full van loan. As the person who sold us the van said, “I’ve bought houses in less time than it’s taking to get this loan approved!”  If the seller and I had not continuously pushed things to move along and offered assistance, I might still be waiting on the van. I finally called a dealer and pleaded that they send the retail value for a conversion kit to the loan officer and it finally went through.  Then they even agreed that the van value was more than what was being asked!  Go figure.
I can’t say enough nice things about the seller though.  What an angel.  He was so incredibly patient and helpful throughout this entire process.  I feel like I made a new friend.  He was such a man of integrity and honor.  It seems rare to find someone like that when you’re buying something as expensive as a car.  We were truly blessed and once again, we see God’s hand in making our prayers come true.
We got the van Thursday night.  I walked around being oriented to it by the seller in the dark with a flashlight.  Would you believe I had never driven it in all this time? In fact, all I have done so far is move it around the yard. I have insurance on it but still need to go to DMV tomorrow to get the title and tags straight. I can’t wait till I can open the door and just have Lynn drive inside.  How exciting that’s going to be!
When you can’t travel safely either due to your vehicle or due to being able to get in/out of your vehicle, your world becomes very small.  Currently the only time Lynn leaves the house was to go to the doctor.  I’m hoping now he will also be able to return to church.  He won’t be able to use his power wheelchair there because the elevator to the sanctuary is too small for it but when he’s feeling well, I may be able to transfer him to a transport chair so he can once again attend.  That would be awesome.
We were also blessed today with the delivery of the patient lift we ordered.  It is so much easier to use the hoyer lift we had.  The rep from Adaptive Solutions in Lynchburg brought it to our house today, assembled it and showed us how to use it.  He was very nice and you could tell he really wanted to provide helpful solutions to his customers.  He was full of information about resources and things to check out that might be helpful.  The Maximove he brought us is so easy to manuever and I can even put the sling on Lynn while he’s in his wheelchair and remove it without any help.  I don’t know why insurance companies can’t see that to have a safe way to move patients around is so much smarter!
We have had a very busy day today.  First Lynn’s physical therapist was here. I ran to the grocery store while they were busy.  Immediately after I got back, the Adaptive Solutions rep was here.  Then the home health company came and picked up the other lift.  Meanwhile a rep for the Hayek ventilator came by to see how that was going, Lynn’s son came to exercise him, and finally our chiropractor came to adjust us both!  Whew, I’m tired just thinking of it all.  I was going to go to DMV after the chiropractor left but Lynn was just too tired for me to leave him home alone long enough to go.  I’ll go in the morning when he’s fresher.  By the way, between all these visits and then immediately afterward till about 10 pm tonight, I worked my regular job. Busy life….
So…we close this week with many blessings and much thanksgiving over God meeting our needs and carrying us through the tough times.  Once again we managed to adapt to life’s curve balls and hit a home run.  We are truly a blessed couple…

The world still doesn't understand disabilities

 

Would you believe I still don’t have the loan settled for our van?  I know God will provide and this van will be ours but it has been so very frustrating dealing with the loan company this week.  Here’s the issue:
The seller is asking about $7000 more than the blue book value for a 2005 Uplander.  The loan company’s policy is that they will not loan more than 125% of the blue book value.  Can you figure out why there’s a difference in price?  Of course!  It’s a wheelchair converted van! Duh!  It’s not a regular van that is equivalent to the basic 2005 Uplander blue book value.  It’s a van that has had $20,000+ of work done to it so that someone in a wheelchair can use it. Therefore, an additional $7000 is extremely reasonable as an additional cost above the blue book value.  However, the fact that this is a specialized van does not seem to figure into the equation.  The loan officer is very sympathetic.  She was once a nurse and understands the need for the van and the fact that they are very expensive but rules are rules–there has to be a way to determine a “reasonable” value for the van and that’s the blue book value.  I’ve suggested that she contact companies that actually do conversion van work so hopefully she will but today was Veteran’s Day and they were closed so I’m not sure what is going on with the loan.  It’s just so frustrating that rules get in the way that do not take into consideration the needs of the disabled.
If dealing with the loan company was not enough this week, I’m also struggling with the insurance company regarding a patient lift I want to buy. When Lynn was in the hospital, I learned to use a device called a Maximove.  It was so easy to manage.  It has electronic controls and allows you to be at the patient’s side as you adjust him from lying to sitting and then slowly adjust his position as he’s placed into a chair or location.  It’s easy to use, very stable, and much safer than the hydrolytic lifts the insurance companies want you to use.  Hydrolytic, manual lifts require that you stand near the pump and/or release value as you use the

patientlyft i aluminium
Image via Wikipedia

device.  Although that’s not that far from the patient, it doesn’t allow you to be right there with them.  It’s also difficult to get the patient adjusted because you can’t change their position while they are in the sling.  I’ve tried the one we have now that has been approved and I never can get Lynn comfortably settled into his wheelchair. Usually he ends up on his spine or twisted. It looks like the insurance company would realize that if it’s not as easy and as safe to use, the caregiver is not going to use it and eventually the wear and tear on their body will cause the insurance company to have two people submitting claims instead of one.  Go figure…
I wonder if the people making the rules for insurance and loans would implement as many barriers to caregivers if they became one themselves.  Maybe it would help if they “walked a mile in my shoes.”

Answer to Prayer

 

I have often mentioned in my posts that God takes care of us and that our church is an ongoing support group for us.  I want to share with you how I know prayers are answered.

 If you follow my blog you know that several weeks ago I wrote a blog about how much I needed a conversion van.  Lifting Lynn in and out of our Impala is extremely difficult and there have been many times that I only managed to move him safely with God’s help through prayer.  I had received a lot of encouragement to look into purchasing a van.  As you know, there are really no resources for getting a handicap accessible vehicle.  There are some scholarships or discounts but the cost of converting a van is very expensive. Therefore, those discounts only go so far in helping. 

We knew we could not afford a new vehicle that we converted ourselves. The cost of a new car plus the $15-$25,000 just to adapt it was too much.  Therefore, we went to our church to ask if anyone in the congregation knew of anyone who was selling one.  We wanted someone reliable that someone we trusted also trusted.

 

Someone did.  Someone I didn’t even know personally from our congretation who had read my email request but she took the time to make contact and let us know about her neighbor.  The van was listed on Craig’s List and it was very reasonably priced for a conversion van.  It was also in very good condition.  The owner has been so accommodating, bringing us the car to check out, getting it inspected and brakes changed, keeping us informed and answering every question we had.  I feel very comfortable with him and the vehicle.  If anything goes wrong with it after we buy it, I feel certain he would not have known it was a possibility.

 

After I sent out the request for help, I just knew in my heart God would send us something… and he did, in only about a week.  By this time next week, we should have a vehicle that I can take Lynn out in without the trauma to me or him.

 

I feel very blessed today and very hopeful.  I often write about the challenges in our lives but I wanted to share a triumph this time.  This was truly an answer to prayer.

Lord, please…

Over the past week, my concern has grown.  I walk into the room and see him sitting there.  His eyes are shaded in pain–not severe pain–more of an aching discomfort due to the broken skin on his coccyx. We’ve tried several types of patches to protect the area but one of them slide and broke the skin.  Then it happened again and more skin was torn.  Now he has an area that’s draining and sore on a place he has to sit all the time.  He can’t be comfortable in bed.  He has to sit up and peddle to relieve the stiffness.  He tries to lie in bed but he just can’t tolerate that for very long. Please don’t let this be the beginning of a difficult to heal bedsore (or in this case, seat sore).
Then there is that look of illness.  He feels miserable–you can see it in his eyes.  He tries to crack a joke but the sparkle doesn’t reach his eyes.  In fact his eyes look sunken and blood-shot.  Blood-shot from the terrible sinus congestion he has which makes it hard to breathe all the time. He has chronic sinusitis and uses 1/3 strength nose spray all the time to combat it but he has to have it at least ever hour.  Imagine how stuffy you feel with a cold and then imagine being like that most of the time.  It’s so miserable. Lord God, help him to breathe easier.
But that’s not what’s behind the look. He feels soooo bad. For months he was on a detox of sorts to try to heal “leaky gut syndrome” and we attributed his feeling bad to that.  Well he’s off the detox now.  Could this “bad” feeling be his reaction to taking the flu shot last week?  If so, why is it taking so long to get better?  Or is this just MS again, rearing its ugly head and making his life miserable?  Where is his quality of life if this is what he has to look forward to?  He tries so hard.  He eats well, exercises, tries to keep a positive outlook and stay active, but it’s so hard to remain hopeful like this.  He’s sick and tired of being sick and tired.  Lord, please show him mercy.
Then there’s the lab work.  I called to check on some lab work he had done two weeks ago.  His hemoglobin was 10.3.  In September it was 12.3!  Why did it drop?  I am hoping that the person who read it to me read an old report.  I’ve sent an email to his PCP to check the lab work since she didn’t order it so we can find out.  If it’s accurate, and I don’t think it is, then something else is really wrong.  I was convinced yesterday it was a mistake but the more I think of it, the more I realize he’s feeling worse and more tired.  His leg is spasming again too and it had stopped, or just about had, when his hemoglobin was up.  Lord, please don’t let that lab result be right because that means another specialist.  He has enough doctors.
He entered the hospital for the first time in his life a year ago this Sunday. During that admission, he was in and out of the ICU four times before he went home.  He’s been too sick the last two years to participate in Christmas and our goal is that he will be able to enjoy Christimas this year AND he will be able to remember it.  Please, Lord, let that come true. 
MS is a strange condition.  I know people whom you would never suspect have MS.  And then I know some like Lynn who seem to have all the symptoms.  I don’t know why it affects some worse than others but I do know it’s disappointing that so little research is being done to look at why it progresses faster in some than others.  I also am angry that there is no treatment for the progressive stages.  It’s like once that point is reached, they are written off.  At least that’s how it seems to me.
He’s calling me again to get him up.  He was able to stay in bed this time about 50 minutes.  I expect he will be up all night now.  Pray he feels better tomorrow.

Happy Anniversary

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.”

What a day!

I have had a terrible day, and it’s all due to having to get a new modem to my computer.  I truly believe computers can either be your best friend or your worst nightmare, and since about Wednesday; I’ve had it up to my eyeballs in frustration with them.

 

First, on Tuesday, I lost the internet.  I HAVE to have the internet because that’s how I connect to work.  I called tech support and spent over an hour, trying to figure out what was wrong.  They decided it was my modem and said they would have to send me one.  I was really upset.  If I can’t work from home, I have to go to work.  Who was going to stay with Lynn if I went in?  If I didn’t go in, I had to take a vacation day.  Who wants to take a vacation because their internet is down? 

 

I was on the verge of tears.  Lynn insisted he would be fine and I had to leave him home alone.  I didn’t want to but what other choice did I have?  I started getting him ready, getting the items he would need within reach, tidied myself up to go in (I don’t exactly dress professionally at home), and got ready to leave.  Fortunately, before I got to the main highway, Lynn called to say the internet was back up.  I was so relieved! I turned around and came home (so much for the tech support diagnosis).


Late Wednesday the modem came in by UPS.  Supposedly it’s faster than what I had so this morning I hooked it up.  I’ve been working on the x!@#$%^ thing all day!  First getting my computer set up took well over an hour because the activation process wasn’t working for me. I finally got that settled.  I then had internet, but Lynn’s computer didn’t.  Tonight I spent 2 hours on the phone with a guy from India (who was incredibly nice), but Lynn’s computer still doesn’t have an internet connection.  It’s connected to my modem, but the internet won’t come up. What’s with that?  I finally had to get off the phone. I have now hooked up a laptop for him to use, but it’s got such a small keyboard and monitor I don’t know that he can use it at all.


I share all this because of the effect it had on us.  I was so frustrated all day–torn between wanting to help him (so he could work on his book marketing and play music from YouTube), and I need to work or do things around the house.  He knew how upset I was, and that directly made him feel like a burden.  He had had a good day today.  He was able to do things in physical therapy and later, when he was exercising that he hasn’t been able to do in a while.  He was so excited, and all I could do was focus on the !@#$%^ computer.  My behavior stole his joy.  He was feeling so bad about being a burden to me that he was nearly in tears this afternoon. Then he recognized it was just Satan trying to steal his joy and undermine his progress so he would give up. Which also showed me that Satan was doing the same thing to me, so instead of seeing Lynn’s growth, I would focus on the difficulties.  What a shame. 


I wish I could say I’ve learned my lesson, but I know myself too well.  I can easily get overwhelmed and start to feel sorry for myself, and then I take it out on Lynn, letting him know how frustrated I am that he cannot do more and accusing him of not trying hard enough. He truly tries but with fatigue and spasms, and just plain ole MS complications, he can only do so much.

 

Lord, please forgive me of my attitude and self-pity and help me to appreciate the improvements and the successes.  And Lord, please give me an extra measure of peace in my spirit so that the frustrations of trying to work on his computer tomorrow won’t result in the same thing.  Amen.

I Just Can’t Deal With Another Thing.

Ever felt like you just couldn’t take one more demand on your energy?  I was like that last Monday night.  We got home from vacation Saturday and I stayed up till 3 a.m. putting things away.  Sunday was much of the same except it was catching up on things at home. Again I went to bed at 3 a.m. and Lynn was up several times so even though I didn’t start my day till 10 a.m., I was very tired on Monday.  Monday was back to work.  I work from home so after getting up late, fixing breakfast, getting us both dressed and fed, settling him down on his peddlar because his legs were spasming, I didn’t get to sit at my computer till around noon.  However, I had already been handling work on my phone while I did all the above (I’ve become very good at multi-tasking).


All day was busy with work…many phone calls and 493 emails to go through that had come in while I was on vacation.  I got some of those done on Sunday and most of the rest on Monday.  The house was hot all day but so was outside so I turned the fan on me and figured Lynn had set the thermostat so it would be warmer.  (He has hypothyroidism and anemia so he’s cold most of the time now). Around 7 pm I ran to the grocery store because I hadn’t had time since we got home from vacation.  When I came back, Lynn was complaining about how hot he was. He did indeed look like he was melting so I rechecked the thermostat because I had set the temp to cool off while I was at the store.  Well it was set now at 70 but the house temperature was registering as 80.  We had a problem!


Lynn told me how to check the fuses in the garage and I went outside to hit the reset button on the heat pump. That wasn’t it.  Lynn then told me to crawl under the house (I hate doing that.  I’m afraid of snakes and not crazy about spiders or mice in case they are there either).  I crawled over to the inside unit, checked the fuses there–it wasn’t a fuse issue–pulled out the filter–hmmm, when was the last time I changed that?  obviously not recently–nothing worked.  It was so hot, I was pouring sweat.  Lynn needed help so I’m back inside helping him while he’s telling me to go next door to see if our neighbor can help (he’s an electrician).  Neighbor not home.  Dinner still needs to be picked, the house is so hot we are both sweating and Lynn is getting very weak from the heat but can’t go to bed because of muscle spasms.  He’s giving me instructions on how to check this and that and to be honest, I thought if I had one more thing to do I was just going to lose it!


Maybe it was the heat; maybe the lack of sleep for two days in a row; maybe the fact that I had a message on the phone from Lynn’s doctor to call when we got back because his blood work was still bad on the anemia; maybe because I knew the AC was going to cost a lot to fix; maybe the hunger; maybe the guilt from not being able to handle it all with grace; but whatever was behind it, I just couldn’t take it anymore…..


But, when you are a caregiver, you don’t have the luxury of giving up. Who else is going to handle it if you don’t?  Lot’s of people are helping us and many more are offering to do so but when you are home alone with someone depending on you and it’s night-time and you know that anyone you call will be burdened, the weight of the responsibility seems like a 2-ton boulder. Know what I mean?


I managed to get through it all that night.  I took several deep breaths, ate a bowl of ice cream (that’s why I’m so fat now), and called my angel of a son-in-law who got dressed, came over and worked on the unit.  He couldn’t fix it but his parents had a window unit they were not using and he went and got that for the bedroom so Lynn could get cooled off.  He was our hero and guardian angel all rolled into one.  God took care of our needs again and gave me the strength to carry on.  He sent my son-in-law who is like a son to me to shoulder my burden and help me to keep putting one foot in front of the other. 

Thank goodness when I can’t deal with another thing, God sends me someone to help carry the load and help me to continue on our journey.