Donna Steigleder

As the full-time caregiver for her disabled spouse, Donna has more than 30 years of experience providing care not only to Lynn but before him, to her daughter now in her thirties. After retiring from full-time employment as a Human Resources professional in 2018, she focuses her attention on helping support the eight members of her immediate and extended family needing caregiving support daily. Between her first career as a registered nurse and her years working in the employment world, Donna developed many skills that make her successful in problem-solving and crisis management. Her greatest desire now is to put those skills to work to help relieve some of the burden caregivers face every day.

Protecting Our Home

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From what I can tell, one of man’s God-given instincts is to protect his family and property.  That instinct doesn’t change just because you happen to be in a wheelchair and can’t use your hands very well. 
Note:  If you’re a member of PETA, do not read any further.  Okay, now you’ve been warned…
Lynn and I live in a rural county with lots of trees and animals around us even though our house is in a subdivision.  We regularly see rabbits, squirrels, deer, an occassional skunk or snake but overall, wildlife sightings are pretty common.  All those cute little animals are fun to watch and bring back sweet memories of Disney movies and cartoon characters who play and scamper around.  Unless you live in the county, you might not know there is a destructive side to these cute creatures.
While deer and rabbits can destroy a garden, our nemesis is the squirrel.  We have dozens of them living in the trees around us.  Two years ago we had beautiful heirloom tomatoes; that is…till the squirrels discovered them!  The plants were right up against our deck but the squirrels were not intimidated by the nearness of humans; no!  They would pick the brightest fruit and sit on our porch rail smiling at us through our bay window.  If we came out, they would run away….about ten feet from us and sit there eating that tomato all the while grinning at us. We lost all our tomatoes that year; nothing worked to dissuade them. 
Also around that time, they attached our trucks chewing through wires and plastic pipes.  One especially destructive group chewed through our gas lines!  Yes, I said gas lines.  We had gas pouring out from under the truck as we drove it to the mechanic to have the entire gas line replaced from where you insert the gas nozzle to fill it up to the actual gas tank and all the way to the engine. We spent several hundred in repairs that year.
Last year was better.  The land next to ours had their timber cut and many of the squirrel homes disappeared.  This year they seem to be back and they are under attack again.
We had a doctor’s appointment the other day and the van would not start.  I thought it was just the battery so a neighbor helped me charge it up.  As I was driving it I noticed three warning lights were on. I took it to the mechanic this past week and those little rascals have eaten up the wiring in our motor.  Had to have $600 in repairs!
That was the last straw.  Lynn got off the phone with the mechanic and said, “I’m ordering a killing stick!”  He immediately went on-line to find the best air rifle he could get that he could use.  It came in at the end of the week and today he had our boys put the scope on the rifle and “break it in.” He needs it to be shot enough times to make it easy for him to pull the trigger but his plan is to sit on our back deck and shoot the little rascals till they learn to leave our vehicles alone.
In Lynn’s mind, he needs to protect our home.  He’s determined not to let those little creatures destroy any more of our property. He sees himself sitting on the back deck and shooting them while he balances his rifle on the rail.  I’m waiting to see how it works because to me the gun is heavy.  Plus I saw our son-in-law cock it and it took two hands so, maybe I’m wrong, but I expect that I’ll be called up to be his weapon assistant. Ugh… I know almost nothing about guns.  I’ve shot a few but only a very, very few times.
So once again in my role of caregiver, I find a new “thing” to add to my storehouse of knowledge.  Lynn’s son laughed and said, “Donna, I can see it now…you cocking the gun, sitting it on the deck, him looking through the scope, and you pulling the trigger so “he” can shot the d— squirrels.”  That’s about what I expect too. Lord, give me strength….

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What is a Caregiver?

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I’ve had the opportunity this week to read a few blogs from other caregivers and last week to attend a caregiver support group.  In hearing the stories of other caregivers, I started thinking about what it meant to be a caregiver.  There’s certainly the obvious answer, “to give care to someone periodically or full-time,” but there is more to the story; especially if you’re a full-time caregiver to someone who is totally dependent on you due to a mental or physical condition.  Here’s my take on it….
…first, there’s the physical commitment which takes on many faces…

  • If the person cannot “do for himself” then you become his muscles and nerves; not just his hands and feet. It is through your muscles, and therefore, your strength, that he moves to change positions, to find comfort, to alleviate pain, to participate in distractions, to have his needs of daily living met, to experience the joys and challenges of life as a participant and not as a spectator. It is through your nerve endings that his body is protected from water that is too hot, sharp objects that might damage skin, body temperatures that indicate infection, bandages that are too tight, food that is too cold to be enjoyable, and other potential discomforts or enjoyments that he is beyond the ability to change but must rely upon someone to care enough to notice them and adjust as necessary for his comfort and enjoyment.
  • The flip side of using those muscles and nerves to provide for care is that you have more aches and pains than you might otherwise have. Your muscles are often strained and in spasm from lifting a body that cannot provide any support for itself.  It’s true what they say about dead weight being heavier.  A limb that cannot be lifted by the owner is heavier to lift than one that the owner can provide assistance.  Sure it weighs the same but the effort required makes it heavier.  So you get up in the morning with sore muscles and periodic spasms.  A good exercise routine would probably help that but finding the time to commit to that is a challenge (especially if you’re like me and hate to exercise!)
  • Besides the daily physical requirement, there is also the fact that you commit to their care even when you need care yourself!  Gone are the days that you could lie in bed and rest if you had a cold or migraine.  Gone are the days that you can have a GI bug and just stay in the bathroom till you are well. You have to figure out how to get help for the person you’re caring for either in-between bouts of being ill or who to call to come rescue you both. Personally, I’m probably going to have surgery soon and will have to find full-time care for Lynn before I do so.  That’s bothers me more than the thought of the surgery!

 ….Then there’s the emotional commitment or impact….Though the physical aspect is draining, the emotional impact may be even more difficult to handle.

  • Again, there’s the emotional contributions of caregiving toward the “caree.”  Part of your role includes observing the emotional thermostat of the individual. Are they depressed?  Are they becoming angry and difficult to control?  Maybe they are afraid about the future or that you will decide not to look after them anymore so they cling to you or try to “guilt” you into staying.  Someone who is chronically ill often goes through the emotional stages similar to someone dying, “denial, bargaining, anger, depression, acceptance” with a lot of going back and forth between the stages as they encounter new issues.  Guess who has to help them through those stages?  The caregiver of course,who is also likely to be going through the same stages themselves.
  • The caregiver’s emotional response is often very difficult due to self-imposed guilt over having some of the emotions we have.  Too often we think that we are “bad” to be angry or resentful about being “stuck” in a situation. We don’t want to give ourselves permission to experience the negative feelings we have.  What happens though if you don’t allow yourself to express them is that they come out anyway in response to the one being cared for or in destructive ways to yourself.  I tend to overeat if I’m depressed and I become overly negative and critical toward Lynn. It’s important to acknowledge the feelings and allow them to be expressed but in a healthy way rather than in a destructive way.  Support groups and therapy help a lot with that as well as writing a blog : )
  • You also experience the effect of constantly having that person on your mind. You have to plan ahead for meeting their needs…do they have enough supplies, when is their medication refill due, are their bills being paid on time, are their clothes okay, are their meals being prepared correctly, who is going to cover for you when you can’t come by, who will take over if something happens to you….etc. etc. etc.  

…Besides emotional and physical commitments, you also become the other person’s “window to the world.”

  • You help them remember what day it is and to celebrate the special occasions on the calendar.  Often every day is just like the last so it’s difficult for them to keep straight the season or the holiday being experienced.
  • They may not read the news or watch it on TV so helping them keep up with current events may be a way to keep them connected (personally, I do not read them either so we could have had an alien invasion and I wouldn’t know about it till someone stopped by and told me about it.)
  • You are the one who takes them out into the real world.  I admire Patrick, who writes Caregivingly Yours.  He takes his wife Patti, who has MS and is fully dependent, on multiple excursions per week.  He keeps her stimulated with new places and entertains her with new advantages to help her keep involved in life, even though her MS Dementia would make it easy for him to say they did when they didn’t.  That’s try commitment to doing what’s good for someone when it would be so easy to let it go.

Then in addition to being a “caregiver” you add MS to the picture.  I know all chronic illnesses have their special challenges but since I deal with MS, I’ll describe that impact.   MS is unpredictable.  Since any nerve pathway could be affected by the myelin degeneration, ANYTHING could go wrong. What is working fine today might not work at all tomorrow.  Someone who is functioning well in the morning may not have the ability to do anything for themselves by afternoon. A simple cold can put them in bed for a month or more and lead to new exacerbations that have long-term limitations. A period of forgetfulness might mean fatigue or the beginnings of MS dementia.  And while all these symptoms create challenges, for the most part they do not shorten life expectancy so the accumulation of new challenges goes on and on and what’s lost is rarely regained.
There is no doubt that being a caregiver is a sacrifice of one’s self.  For me, I often feel like I am an extension of Lynn and at times, even lose myself in him so that I no longer exist.  When that starts to happen I have to work to separate myself from that place; otherwise, depression sets in and I am less effective at anything. 
Overall, I feel blessed to be a caregiver.  I receive a lot of rewards from being one.  It’s the hardest job I’ve ever had to do but it’s also the most rewarding because I’m very fortunate that the person I care for, cares for me, and we share the challenges together.  Plus, he’s very grateful and I have much support from our families and friends. 
But most of call, I’m blessed because God gave me the spirit of being a caregiver so I am doing what he has given me the talent to do.  Not everyone is so lucky and for them being a caregiver is a much greater challenge.  To them I say, “do the best you can but don’t expect to be perfect and don’t beat yourself up if you don’t like it.  You’re a blessing to the one you care for and that’s enough.”
So am I.

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What Do You Feel Guilty About?

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That question was posed to me yesterday during a get-together with several other caregivers.  My first thought when I pondered that question was, “what don’t I feel guilty about?”  I realized in listening to the others share, that I don’t give myself enough credit for doing the best I can.  For example….
I feel guilty that I get annoyed at Lynn when he interrupts me over and over again when I’m trying to do other things.  I hear him call my name less than five minutes after I’ve been in his room helping him for fifteen and my first thought is, “what now?”  Then I go into his room fussing about why he couldn’t have said something while I was still there. Often his issue is something he could not have anticipated and something he really needed.  I realize that in my mind, I’m accusing him of being thoughtless of my time when really all he’s doing is asking me for help with something he really cannot do himself.  More times than not, it’s something I would have wanted done if I was him so I can’t really blame him for asking…Then the guilt comes rolling in…Why can’t I have more patience?  How can I get angry at someone just asking for help when he really can’t do it himself? What kind of caregiver am I to resent helping him? …and other thoughts which I am sure you, too, have experienced at times.
Then there’s the guilt for not doing my job as well as I used to.  I’m not as prompt in answering calls or getting back to emails.  I can’t come into work to meet with people face to face except once a week.  I’m not there to brain-storm resolutions to issues or even just to share concerns.  I don’t turn out as much work as fast as I used to.  Therefore, the guilt piles up and I feel that I’m letting everyone down at work as well.
Of course, there’s also extended and immediate family guilt.  I can’t attend family gatherings unless they are held at my home.  I can’t help out with family needs as much.  I often have  to cut conversations short to go take care of something for Lynn.  I can’t be there to support them and care for them the way I once did…More guilt.
I don’t spend time in worship as I used to.  I was very involved in my church before Lynn’s hospitalization.  I was often at church five out of seven days. We rarely missed attending a Sunday.  I tried to always pitch in to help others.  Now I’m lucky if I  find time to listen to the sermon off the internet from the previous week on Sunday morning. 
When I step back and take a look at what I’m feeling guilty about, I realize I’m ridiculous. I’m feeling guilty about being human! 
If I only had one of those things to do, then I could devote lots of time and energy to perfecting what I do, but that’s not the case.  I have to divide my time among so many needs that it’s impossible to do more. 
Imagine this:
If I was a home-made delicious apple pie that was never cut, then I would look and smell good but either would not bring much joy to anyone or if eaten all at once, I would make them sick.  If I could be cut, instead, into eight pieces, then eight people could share in the joy of my deliciousness or I could bring joy to fewer people more times.  But what if, I’m cut into sixteen pieces?  Does that mean I’m not delicious and I don’t bring joy?  No.  I would still taste just as good, though I could not bring as much immediate joy to those sharing in the pie.  I have not lost my value or the delicious flavor available to those who can sample the taste, I am just spread out to many who share the limited joy of smaller pieces.
Maybe that’s a weird analogy but it sort of works.  I still am me with all I have to offer and share, but I have just so much of me to go around.  The smaller my pieces become, the less joy I have to share with any one person.  If the ingredients were “thinned down” so that the pie would go further then it would not taste as sweet or bring as much joy so I have to allow myself to do the best I can with the pieces I have to offer at that time and not look for ways to thin myself out so much.  That also means I have to give up my way of wanting to be perfect with what I do.  I need to allow myself to let some nonessential things go, buy rather than make things, accept help and ask for more, not promise to turn around projects as fast as I once could, etc.  I need to learn to care for myself in the same way that I care for others and give myself permission to be less than perfect as long as I do the best I can at that moment.  I am still an awesome caregiver, a very skilled worker, a follower of Jesus, and an awesome Mom even though I can’t be all things to everyone I used to be at every moment. It’s time to step off my own pedestal and have a little reality check.  I’m okay and I’m doing a good job with what I have and can physically manage at any given time. 
So, time to kick guilt to the curb.  “Get thee behind me Satan. I’m a child of God and I’m doing just fine so take the guilt knife out of my back and get lost!”

What Do You Feel Guilty About? Read More »

Thinking of Buying 4WD Wheelchair? Don't Buy from Radical Mobility!

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When Lynn first lost his ability to walk, what he missed the most was fishing.  He loved to surf fish. At least four times a year, we would take a long weekend and go to Cape Hatteras for him to fish.  It didn’t matter if it was raining, cold, or hot, he would pack up his fishing gear and take to the sand.  Me–I would pack a good book and relax!  At night we ate what he caught or we went out for seafood.
Our last trip was the weekend we found out he “officially” had MS. During that trip, he had extreme difficulty walking to the beach.  I helped him take his gear and get settled and spent a lot of time on the beach “just in case.” Once the sun went down, I went in but he continued to fish.  About an hour later, he came in soaking wet.  The tide had come in and he had lost his balance and been pulled under, filling his high water boots to the top and soaking through all layers of clothing. By that point he could not stand upright. He walked bent at the waist holding on to whatever was close by.  I helped him get in the rest of his gear and he took a shower.  Although we didn’t talk much about it, we had already been prepared by the doctor that he expected the results to be MS.  So in our hearts, we knew that life as we knew it then was about to change.
After his diagnosis, he was determined to keep doing the things he loved as long as possible.  He soon was using a rollator which had a seat and I was pushing him in it more than he was walking with it. After a few “spills” where I would hit a bump I could not see and he would go flying, he got a wheelchair and then a power chair.  He really liked the freedom the powerchair provided and began to do research on the possibility of a wheelchair that could go in the sand.  He decided that the one that seemed to have most of the features he needed was made by a company called, Radical Mobility (http://radicalmobility.com/) located in South Africa.  They advertised a really cool product.  The chair itself was sturdy, not particularly pretty, but it would rise straight up to see over objects and tilt back.  It had various speeds, and could go in sand, over inclines, up steps, and over rough terrain and still remain upright.  It had headlights, a horn, and adjustable headrest, arm rests, and legs.  It seemed to be just what he needed to be able to continue to surf fish. 
At that same time he was approved for disability by social security and received his back pay check.  It was just enough to cover the cost of the chair (almost $13,000 including shipping). We hated to spend that much but prayed about it and felt that buying the chair was putting our faith in the possibilities of future pleasures and realized dreams. He ordered the chair giving the specifications he needed.  It took about four months to build and it was shipped in  early May of 2010.  We were due to go on vacation the last week of July.  Unfortunately, it didn’t arrive till September due to sitting in customs waiting to be ruled as “safe” and not a terrorist device.  At that same time, Lynn had developed a misdiagnosed urinary track infection.  He was feeling worse and worse, losing his energy level steadily. 
When we got word that the wheelchair was being delivered, he was too sick to check it out.  The truck driver could not get up our driveway with his tractor-trailer. He unloaded it at the end of our drive way. The shabby crate it was in had holes punched in the sides and by the time it was unloaded from the truck, it was an easy push on the poorly constructed crate to take it apart and get the wheelchair out.  The instructions were very basic and poorly written.  I had a very difficult time figuring out how to operate it so I could load it onto a trailer behind my car to take it to the house. (It was not completely assembled so I could not drive it to the house.)
I got the parts assembled, put it in neutral and “walked” it into the house. Since each tire moved independently, it was very difficult to drive within the close quarters of the house and to make the turns, I had to lift it around corners.  I parked it in the living room hoping Lynn would be able to try it out in a few days…
Fast forward to July. From September to July, Lynn was in and out of the hospital and recuperating from his lengthy admissions. Hoping that being able to us the wheelchair would give Lynn something special to look forward to, we decided to take it with us to the beach even though Lynn had not had a chance to drive it. He really wanted to use it to at least “walk” along the beach or fish from the pier.
Two nights after our arrival we decided to try it out.  We backed it out of the van and I put Lynn in it.  He drove around the parking lot a little to get a feel for it and then tried to drive it up the ramp so we could take it to the beach access area.  He couldn’t get it to drive up the ramp!  He weighted too much (keep in mind he had lost a lot of weight in the hospital so he maybe weighed 165 lbs).  My lightweight daughter could drive it up the ramp but not him (we knew she could because she had loaded it into the van initially.)  We finally pushed it manually up the ramp and into the van because we were determined to try it on the sand.  We got to the access area and he drove it out of the van into the sand.  It went across the parking lot to the sandy area and stalled. It would not go forward or backwards. Stuck!  No movement at all!  I had to drive back to the condo, get his transfer wheelchair, transfer him from the dead chair to the manual chair, and then we pushed the dead chair into the van. How disappointed we all were!  I felt like crying.  He was heart-broken.
So we came home and tried to contact Radical Mobility to get it fixed.  We sent emails and got a response that someone would return our inquiry shortly. We waited…and waited… and waited.  Nothing.  We sent another email.  Again we waited.  We figured out the salesman we bought the chair from had left the company when I went to their Facebook page, so we tried the “contact us” email.  Same thing.  Someone named Martin was supposed to contact us.  Nothing came.  We repeated the process several times.  Finally Martin responded and said send them the joystick, cables and motor.  We had a question about what exactly was needed, again several weeks of sending emails with no response and finally we got the instructions.
We sent the parts to their location in South Africa. No word for months.  Then finally in April of last year (2012), he said it was fixed and was being sent back to us.  He cautioned it might take a while before we got it due to a postal strike in South Africa.  That was eleven months ago and we still do not have the motor back.  We have a gutted wheelchair sitting in our living room with no way to power it up.  We have emailed Radical Mobility regularly since last April to ask for tracking information and help with locating our motor and no response. Occasionally we have gotten an email back saying they are checking on it and will get back but they don’t.
This machine was built in South Africa.  They do not have an American facility.  We have no way that we know of to get the motor back.  We are now searching for another manufacturer who might be able to build a comparable motor that could be installed so we can use the wheelchair. I’m sure it will cost us several thousand to get the necessary parts programmed, built, shipped and installed.
I feel betrayed.  This company is owned and the machines designed by someone who is paralyzed. He knows the struggles of the immobility challenged.  How can he treat fellow disabled individuals so shabbily? It’s unethical and wrong on so many fronts.  He took our $13,000 and gave us a large statue for our living room. It’s worthless. But the worth part is he shattered Lynn’s dream.  We cannot afford another chair. That was his only hope for getting a chair to use in the sand. This company does not even respect us enough to communicate with us; they just ignore us completely.
So if you or anyone you know is considering buying an all terrain wheelchair, please warn them not to buy one from Radical Mobility.  They will take your money and not give you what you paid for.  Their customer service is not even marginally present and their product just plainly does not work.  Do not be fooled by the claims on their website, their Facebook page, their Tweets or their blog.  Do Not Buy From Them. 
I have never written a negative review like this before but my conscience just keeps telling me to warn others.  I hope I have helped someone else from making the same costly mistake we made.

Thinking of Buying 4WD Wheelchair? Don't Buy from Radical Mobility! Read More »

Adjusting to Disappointment

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I had a serious disappointment tonight when I got home from work. Not about Lynn but something work related.
Once a week I go to the job site where I touch base with my staff and take care of a few meetings that I feel need to be done with “face time” rather than over the phone.  On those days when I get home, I catch up with emails that I can’t really address while on site. As I was reading my emails tonight, I got a denial on a request I had made.  It was something that I had expected to get an affirmative response on and the denial came as a shock.  Obviously I can’t go into what this was about because it’s confidential but what I want to share is how it brought up all the fears again that what I’m doing–being both a full-time caregiver and a full-time employee–is negatively perceived by others.
The reality is that the rejection I received was not directly about me but it was something that impacts me indirectly–a lot.  I can tell myself intellectually that this “no” was not about the value others place on what I do.  But emotionally, what I hear myself saying is that what I do is not as important to my organization as I thought it was…and that’s hard to accept. I work SOOOOO hard to do a good job.  Thinking that those efforts are not appreciated hurts me to my core.
What has this got to do with caregiving you say?  Here’s how I link it in my mind.
…I think that I’m very good at what I do.  I believe that my staff and I actually save the company a lot of unwanted pain and suffering through the interventions we do. However, what we do is intangible. We don’t bring in any income.  We do “prevention” work so there is no tangible return-on-investment.  We “know” that if we did not step in to resolve many of the issues we get involved in that it would likely impact staff turnover and possibly there might be more complaints that have to be addressed both from internal and external sources.  However, you can’t prove the cost savings with prevention. So, many people feel what we do is an “extra” and therefore, non-essential.
That’s where my fear comes in.  What if the message I’m receiving by this rejection is actually that we are not needed?  What if this is the first step to them saying that others could do what we do in time so we are not needed?  That thought is too terrifying, so I’m not going there right now.
On the flip side…
My first response when I got the rejection was anger followed by depression and tears.  I was really hurt. It also made me feel unappreciated and undervalued.  Maybe I’m too sensitive which could certainly be true being that I only slept 5 1/2 hours last night.
Then I start thinking that if that is how they feel about what we do, maybe I should go somewhere else where I might be appreciated.  That’s where the brick wall comes in.  The reality is that I can’t go anywhere else no matter whether I’m appreciated or not.  I’ve worked here over twenty years.  I’ve worked my way up in the organization.  If I went somewhere else, I would be starting over.  I only have a bachelor’s degree. To make what I make now somewhere else, I really would need a master’s degree for my application to even be considered (their loss if they didn’t consider it though).  There is absolutely no way I could work on getting my masters degree.  I can’t commit the time or the money toward that pursuit.  So I’m stuck.
If I was not a caregiver, I would go back to school in a heart beat.  I love to learn and though it would be a challenge at my age, I’m sure I would enjoy the experience. But I already fit in 30 hours into a 24 hour day.  I can’t get to the store that is five minutes away to buy groceries without major planning and rushing through to get back. How could I sit through a three-hour class, even on-line, and be able to get anything out of it?  I couldn’t.  I had thought about getting my certification by doing self-study.  Then the day after I decided to do that, I had one of those thirty hour days where every twenty minutes I was called to do 15 minutes of caregiving and gave up THAT idea.
My reality is…I’m a caregiver first.  Then I’m an employee.  I need this job to be able to give us a place to live, insurance to pay the medical bills, and access to all the other things I need in life.  I can’t “give” to my job like I once did.  Where before I was exceptional and I amazed people at how much I could get done; now I do a good job, even a great job at times, but I can’t do an amazing job any more.  I just don’t have that option.  Now, I do the very best I can with everything I do and often don’t feel like I do anything well enough.  Some days that’s true; everything suffers.  Other days, I shine.  I just have to accept that I can’t be all things at all times and I’ve lost some of my perceived value by those with whom I work.
That perception by others that I don’t have the value I once did, hurts but not everyone feels that way, thank goodness.  Tonight I got a lovely email from someone I work with on occasion.  She was thanking me for sharing in my blog because she is just starting down this caregiver journey.  That really made me feel good.
So, I’m disappointed tonight…heartbroken for the person who will be affected by the denial even more than me, but trying to face my reality.  My priorities in life have changed.  This blog is now one of those priorities; its how I try to help others in some small way. I have to believe that maybe what I share helps others so maybe some of the trials have a greater purpose as well.  I hope so.
In the meantime, I take life one minute at a time. Have a good cry over the disappointments and move on…It’s just a job now…I have other things much more important to do.

Adjusting to Disappointment Read More »

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

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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.

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

Wanted: Caregiver Ten Hours a Day

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I needed to go into work on Monday.  I was supposed to be meeting someone at 12:30 so I had to leave by 11 (an hour to get to work, 30 minutes to walk to the  location of the meeting and time to prepare for the meeting).  To leave by 11, I have to allow three hours preparation time at least.  To leave, I don’t necessarily have to have someone here but Lynn has to be out of the bed and “set up” for both comfort and safety.  Therefore, to get to work to attend a meeting at 12:30, I need to be out of bed to start by day 4 1/2 hours before the time I need to be there.
Because I come on site only one day a week, I usually set up back to back meetings for while I’m there.  It also never fails that when people see me in the halls, they stop and ask my advice on whatever is happening in their area at that time (that’s my job essentially; I give advice).  I usually take some type of ready-made lunch bar as my lunch to chow down as I walk between meetings.  The entire time I’m on site, I’m watching my time knowing that on my way home, I have to stop and get groceries while I’m “in town” and whomever I’ve asked to stay with Lynn is usually anxious to get back to their lives.
It’s almost always the case that I’m running late.  Lynn always needs several “just one things.”  My relief usually walks in the door as I’m trying to walk out so I get no help getting out the door.  Once I’m at work, I always have at least one or two, “have you got a minute?” requests.  Then grocery shopping always takes longer than I think and I almost always need to add a stop of two (library, post office, another store).  Therefore, I’m always late and always feeling guilty for being late.
Monday it really got to me.  I ticked someone off at work before I ever got there about a class I was supposed to teach and didn’t want to because the registration was only for one person.  I finally said I would teach it but they had arranged for someone else to cover for me and that someone was annoyed when I said I would take the class over after all since she had spent her weekend re-doing my slides.  I felt so guilty for having her cover for me that I cried all the way into work.  Then I went to her office to apologize for her being asked to do my class and I cried again. I hate for anyone to do my work for me! I don’t want people to think I’m slacking off and I know that because I work from home, people think that I’m not doing my job as well.They don’t say that to my face; on the contrary they tell me how amazed they are at what I get done; but I see  the looks.  I know the tone of voice.  I know when I’m not told about things that I SHOULD be told about and when I’m not included in things that I should be included in deciding.  I also know what is usually said about people who work from home–Are they really working all the hours required?  Can they be counted on?  Are they really meeting the expectations of the job? Should they be required to come back into the office?
That last question is the big one for me.  I would love to be able to work from the office and escape from being a caregiver/full-time worker every day.  However, I know that if I was required to come into the office, I would probably have to find a way to quit.  On my salary alone, we could not afford a 24-7 caregiver for him.  I also know that if I took over his care when I got home that with all I would have to do between arrival and departure the next morning, I would get even less sleep than I do now which is on average only six hours a night.  Driving would not be safe; physically I could not keep up.  Plus if Lynn had to use a foley every day and still used the peddler as much as he does now, he would get a urinary track infection from the trauma of the constant movement.  His last UTI landed him in the hospital for three months due to various complications.  I don’t want to go there.
So I decided to hire a care giver one day a week for 8-10 hours a day to arrive an hour before I had to leave and to stay long enough for me to do all I needed to do.  I wanted an employee.  Someone I could give instructions to and who would do all I asked because he/she was being paid to do so.  Someone that was a stranger so he/she could help Lynn with hygiene and tolieting issues without embarrassment to either.  I told Lynn what all I wanted this person to do … and he asked his son to do it.
Don’t get me wrong.  His son is awesome about helping me out but he has a new job that is already making it difficult for him to be here as often as I need him.  Plus Lynn doesn’t want him doing as many personal things for him because he doesn’t want to embarrass him or make him feel overly burdened.  I know Lynn was trying to help out and I know he would feel more comfortable with his son than anyone else but now I don’t think my goals for what I need will be met. I’m going to see how it works and plan to request of him all that I would have requested from a paid caregiver just to see, but I’m not confident.
Keep your fingers crossed for us!

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The View From Up Here

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Stretched outright, Lynn stands about six-foot tall.  For the past three years; however, he has been around four-feet tall. That’s his height when he’s in his wheelchair.  Since just before he was hospitalized in 2010, he has not been able to stand up or walk.  Being restricted to a wheelchair has; therefore, changed his perspective on how he sees the world. In other words, his view of the world dropped about two feet.  This week that changed…
I may have mentioned that we were looking into buying a device that would help him stand.  Lynn has been exercising religiously since he got out of the hospital trying to regain the muscle tone he lost while “laid up” for about three months off and on in 2010.  It takes much, much longer to get it back than it does to lose it. In fact, we have heard it said that it takes a week for every day of bedrest to get back what was lost.  After many hours of exercising, he has now gotten to the point where he wants to focus his energy on possibly being able to stand independently.  He realizes he may never be able to do that, much less walk, but he also figures that if he doesn’t try, it will absolutely never happen.  Having made that decision, he went in search of a device that could help him reach that goal. He found what he was looking for in the newly released Rifton Tram (find out more at: http://www.rifton.com/adaptive-mobility-blog/tag/rifton-tram/.)
The Tram is a multi-purpose device with a low center of gravity that lifts from below rather than above.  In some ways it’s similar to a hoyer lift with the legs that widen but that’s where the similarity stops.  It has the ability to be a lift/transfer device, but it also allows you to help the person go from sitting to standing and then from standing to walking.  It’s light-weight; only weighing about 70 pounds; and rolls easily.  While no medical equipment is cheap, this one actually sells for right around $5000 depending on whether you buy the optional scale device with it as well.  The scale allows you to determine how much weight-bearing is occurring and helps with determining progress in that area.
Since the insurance company says this device is too new to demonstrate that it is truly effective in all that it claims to be able to do, they won’t pay for it.  They classified it as “experimental” when they rejected it. So, we decided to take the money out of savings.  Sure it took a big bite out of what we might have for other things but how do you put a price on hope? For Lynn, the price was $5000.  In the scope of what it might do for him, that price seems worth it.
Adaptive Solutions (http://www.myadaptivestore.com/) , the company that helped us find out about this device and purchase it, was very supportive throughout the process.  Lee Rooney, the owner, really believes in this equipment, and personally brought us the device and showed me how to use it. For him, it was a two-hour drive from Lynchburg on a Saturday to deliver it to us so that we could ave it as soon as he got it. You can see how dedicated he is to his customers.
Though the process is simple, I have to admit, it takes a lot of practice to get the straps set up to be the most effective for what we want.  Yesterday it took me four tries.  Once, the straps were too tight in the forward position causing it to lift him into a sitting position rather than standing. Two other tries had him once with his right side longer than his left and then the third time with his left side longer than his right.  Finally, I had the straps equal enough that he had almost even pressure on his toes and he was able to stand for a while. Today I got it right on the first try!  He was able to push his feet into the floor and to slightly pull back on his knees as if to lock them–both movements being necessary if he wants to stand.
One of the main reasons we got the Tram though is Lynn’s feeling of independence and normalcy.  He recalled that when he was in physical therapy, his therapist used to stand him almost upright when he transferred him.  He described how exhilarating that feeling was.  When he first stood with the Tram, it was a similar experience. “I feel so tall!” he grinned.  He explained that he had forgotten how it felt to look down on things.  He was so used to being at eye level that to look down and see objects below him made him feel like a giant.
It was a good feeling…for us both.

The View From Up Here Read More »

Trying to be All Things at All Times

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I’m having one of those “half-empty” days.  Didn’t start out that way.  I was excited because Lynn was having his Tram delivered today and I knew he would be happy to have that.  The Tram is a device we bought to help him stand and perhaps even walk one day so it’s a “hopeful” device based on our faith that he will be able to do more in line with walking, in time.
However, he woke up not feeling well from his Rebif shot last night.  When he doesn’t feel well, my day becomes devoted to his constant need for attention.  I needed today to catch up on work I was behind in from my job.  I count of having some dedicated time on Saturday and Sunday to make up for the time I have to spend caring for him during the week. Well, it’s now 7:30 p.m. and I’ve given up the hope that I’ll get to do any work.  I realized I was depressed and feeling overwhelmed so I decided to talk to you all because I know you understand.  In other words, you’ve “been there, done that.”
I get so discouraged sometimes.  Lynn wants me to be all things at all times and I get so tired of trying to keep up with it all.  For example, he has an itch that needs to be scratched so he calls me to come scratch his leg.  I get there and he looks at me expectedly as if I should know what itches so I go through the twenty-questions routine to narrow it down.  “Which leg, top or bottom, nearer the foot or thigh, inner or outer side,” until finally I get an idea of where the itch is.  Then I scratch wondering if I’m coming close and when I can stop.  He expects me to instinctually just know what he needs.
A few minutes later, “Donna, come fix my patch.”  Lynn has a pressure ulcer on his buttock I’ve been treating and covering with a foam-type patch.  It’s large enough that it pulls on his skin hair at times or sometimes the problem is the air-bladders in his seat cushion that press against it and make it hurts.  Whatever the problem, he expects me to make it better. He looks at me imploringly to say, “make it stop hurting” and I fiddle around under his leg, lifting it up, smoothing out the wrinkles, padding down the sharp points that come from under-inflated air bladders to see if “it makes it all better.” Sometimes it works right away; other times I work and work to make it all better. When it’s the last scenario, I feel like crying in frustration before I’m released by him to go back to whatever job I was trying to do before he called me for help.
When I’m not magically trying to fix pain and discomfort, then I’m acting as psychologist.  This week he got depressed because he had a visitor who choose to tell him about two people she knew with MS who had serious complications or whom the disease had devastated.  One of them died and the other is bed-ridden and in a lot of pain all the time. After she left, Lynn, in exasperation asked, “why do people do that? Why would anyone tell someone with a chronic health condition about someone with the same condition that was doing much worse than they are?  Can’t they understand that I don’t want to hear about how “bad” I could get? It’s hard enough to keep a positive attitude and keep fighting this thing without someone trying to bring me down with stories of how others lost their battle.” After that visit he was irritable and easily annoyed for a while so he needed a lot of attention.
A new challenge lies ahead for me. Lynn now has his Tram which could lead the way to a lot of progress OR it could result in a lot of disappointment and frustration if his condition won’t allow him to stand with support.  However, who is going to be the one to help him with his goal of walking?  I am of course.  Insurance cut out his home visits for Physical Therapy.  They might approve outpatient visits but honestly, if I had to take him in for PT every day, I might as well give up my job now.  It takes a minimum of three hours to get him and I ready if we are going somewhere or having someone come to us; then there’s thirty minutes or up to an hour to drive to wherever we’re going.  Therefore, to save time, I’ll have to become his PT.  I already help him every morning to change weights, apply straps, adjust positioning, hold equipment, etc. while he works out. I’ll be adding to that assistance with standing. He will need to increase his endurance by standing longer at a time so I’ll have to be close by meaning–more time away from my paying job.
Everything he asks me to do he needs to have done for optimum health. Everything he asks me to do though takes time from all the house maintenance, car maintenance, shopping, cleaning, food preparation, personal hygiene, job duties, making appointments, etc.  He REALLY needs a full-time assistant but our bills are significant enough that I couldn’t carve out that much money to have someone full-time–and in-home care is not covered by insurance. I feel like I’m working twenty-four hours a day; seven days a week.  I haven’t had a day away from him that wasn’t related to my going into work since Eli was born and I stayed at the hospital all day/night with Sarah and Greg waiting for his arrival.  That was May 27.  Before that I had a shopping day in October looking for a dress to wear to my nephew’s wedding.  That’s the only time I have been away for several hours unrelated to work in a year.
I’m tired.  I’m discouraged.  I need sleep.  I need to get away…..but I need to go give him his shower, fix dinner, get things ready for his family who are coming to our house for an after-Christmas gathering tomorrow, and meet him many requests for assistance till I fall into bed around 2:00 a.m. tonight. Oh well, life goes on…
PS:  Don’t worry about me. I’m just using you to regenerate myself. Thanks for allowing me to share my feelings with you.  I can’t do that with Lynn; it would hurt him too much.  I’ll be fine.  I’ll see my grandson tomorrow for a few minutes and the world will be smiles and coos again.
Thanks for listening.

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Which Half of the Glass Am I Today?

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I have become a “glass half empty” type of person.  I’m not sure exactly when that occurred but it’s definitely true.  Whenever something comes up as a possibility, I think about the risks associated with it and start preparing myself to deal with those possible traumas and disappointments. 
It drives Lynn crazy. 
Lynn is very optimistic.  He looks at the possibilities and he believes in potentials.  He talks about walking again and building the house we started years ago.  I respond with, “you have a lot of muscle groups to retrain. Don’t get disappointed if you are not able to walk by the time you want to be able to do so.”  In my mind, I don’t see walking even as a possibility.  In his mind, he feels that as long as he keeps a positive attitude and keeps trying, anything could happen.   I want to be more like Lynn.
So with that in mind, I’ve decided to turn over my glass and let it be half full today.

  • Instead of dirty carpets that are covered with stains that can never be removed, I see the blessing of dirty carpets that can have anything spilled on them and it not matter at all.  What’s one more stain?
  • Instead of worrying about cleaning up the clutter that has accumulated around the house, I see that I have immediate access to the things I need without having to climb step-ladders or go to the attic.
  • Instead of being sad that I never get to go shopping to pick out new clothes or browse whatever might be there, I realize that I’m not being exposed to the flu and other ailments so many others are getting from being in crowds and sharing door handles.
  • Instead of feeling sorry for myself because I can’t go into work and see people face-to-face so that I get a chance to get away, I’m thankful that I don’t have to put on make-up and do my hair and I can work at my desk in my scrubs and slippers while participating in conference calls with directors and VPs.
  • Instead of complaining about all the medical equipment we have stored in all our spare rooms, I’m thankful that he has access to so many things and is making progress toward moving back to the less dependent modes of movement.
  • Instead of complaining that he’s playing his music so loud I can’t hear myself speak when I’m at the other side of the house, I am thankful that with the music I can hear him sing when for so long he didn’t have the breath to say a full sentence.

I know that as a caregiver, I have to think about the “what ifs” and have contingency plans. I know I am responsible for his safety and for realistically planning for what lies ahead.  But I’m thankful that Lynn isn’t like me.  I’m thankful he doesn’t give up and he keeps hope alive.
I’m thankful that we are different; that he’s “half full” to my “half empty” and that when we blend together we are both “full.”

Which Half of the Glass Am I Today? Read More »

What do I do Now?

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Following the get-together last Saturday with my family, Christmas was fast upon us two days later.  Christmas Eve we always have our children come over for our family time.  Since the baby was still recovering from his cold, my daughter brought him to our house before heading in for the Christmas Eve church service.  I planned to watch him, cook dinner and be ready for everyone to come back around 6 or 6:30 for dinner.  However, shortly after they left, Lynn started running a fever.
While fevers can be a source of discomfort and can make anyone feel bad, for an MS patient, they can be devastating. Between 4 and 6 p.m. his temperature rose to 103 degrees.  Along with the aches and malaise brought on by the fever, his spasticity became so severe he was asking me to stretch out his arms every few minutes.  Meanwhile the baby needed to eat and I had dinner to cook. I fed the baby but other than that, just rotated him from play site to play site.  Then he began to get sleepy and wanted attention.  I had put potatoes on to cook, and was literally running from kitchen to bedroom every five minutes as I bounced the baby rhythmically trying to “rock” him to sleep in my arms (it didn’t work). 
I called Lynn’s son, Eric, and told him, “Dad had a fever and I needed help; come early,” but by the time he got the message and could get ready to come, it was already six. When Eric and his wife walked in, I was so relieved. I handed Erin the baby, told Eric to stay with Lynn (I had finally gotten the temperature to start coming down) and I took off for the kitchen. Fortunately the other kids were late and didn’t get here till almost seven.  By then all had settled, and dinner was ready.  Whew!!!
Lynn was not able to join us because he felt too bad but everyone would go visit him periodically to keep him company and then let him rest.  It was disappointing that he could not join in the festivities, but, all in all, Christmas Eve was fun and certainly memorable.
The next day, Lynn was very tired from the aftermath of the fever but was able to participate in a late lunch with his family.  His sister came over in the morning and fixed the meal and it was delicious.  She left us some food for dinner and after everyone left (and Lynn had a nap) we rounded out the evening with a movie.  Later we had leftovers (his were made just for him according to his diet) and we went to bed around 2:00 a.m.
At 3:30 a.m., I woke up terribly sick.  My stomach was grumbling and I knew I better rush to the bathroom before I had an accident.  As I rushed past Lynn, he said, “I need to pee.”  I replied, “too bad, I’m going to be sick.  Hold it!” and rushed on to the bathroom where I proceeded to have both vomiting and diarrhea. Several people in the community had GI bugs so I was not sure what was going on.  I thought it might be food poisoning because the stuffed mushrooms with cream cheese had set out for several hours and I finished them off for dinner, but what if it was a virus?  I didn’t want to expose Lynn.  I could not imagine managing him through hours of diarrhea and vomiting, plus something like that could be a major set-back for him or even require hospitalization.  But he needed to pee so I needed to figure out how to care for him and reduce his exposure to me.
The entire time I was being sick, I had in the back of my mind, he needed to pee.  I figured if I could get a foley inserted he would be okay for a while till I could get someone to come take care of him.  So after I would vomit, I would have that period of peace between events.  I shuffled off and got the foley insertion supplies and laid them out.  Then went  back to the bathroom.  When all was calm again, I came and put in the foley and then went back to the bathroom.  Knowing he had a foley, I figured he should be okay for a few hours.  I grabbed my cell phone on one of my trips out of the bathroom and sent a text to his son, “I’m sick.  I need you now! Come take care of Dad.”  It was in the middle of the night so he did not get the message for several hours but came as soon as he could afterwards. By then the worst was over and I was sleeping the needed sleep of recovery.  Eric stayed most of the day until I felt strong enough to eat and take over Lynn’s care.
I had wondered before what I would do if I got sick like that.  Now I know.  I just keep going and work around the illness.  I thought about calling the rescue squad to put in a foley but I have heard they won’t do that.  They would take him to the emergency department and have it put in there.  Can you imagine?  I’m sick, they load him into an ambulance and take him in to get a foley.  He’s then stuck in the emergency department somewhere totally ticked off and worried about me and I have to figure out where he is and how to get him!  That would be a mess, wouldn’t it?  But then again, if you can’t pee, it does eventually become an emergency.
You may recall I have a daughter who is a nurse and you might be thinking, “why doesn’t she call her?”  Unfortunately, my daughter has a phobia of being around vomiting.  This is a true phobia and she becomes dysfunctional in such a situation.  She would be no good.  She could handle just about anything else calmly and professionally but knowing I was vomiting would make her avoid my house as if we had the black plague.  Her phobia is beyond her control and something we have dealt with since she was six so I know better than to try that route unless there is no other option, and even then, I’m not sure she could handle it.
Anyway, I figured out my own solution and managed to take care of Lynn while I was sick. I’m sure what I had was food poisoning not a GI bug because by the next day I was fine.  So all ended well.  Lynn’s fever did not return.  My cold is slowly getting better and tonight is New Year‘s Eve.  I’ve started taking down my Christmas decorations and hopefully will make a big dent in them tomorrow.   
I hope 2013 will be a good year full of family and love and hope.  I know if challenges come, as I’m sure they will, we are not alone.  Our Lord is with us and the angels he has given us (a family, friends, and acquaintance who look out for us every day serving as his hands) will met any need we may have.  We are truly blessed.
May God bless you all throughout this coming year! 
From my house to yours, Happy New Year.  
Donna

What do I do Now? Read More »

Warning! I have a Cold!

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Yesterday we celebrated Christmas with my side of the family.  Several traveled about five hours so that we could be together. We had a wonderful time but it almost didn’t happen.
Earlier in the month I posted a blog about how difficult it was to choose between caring for Lynn and helping out my daughter who was sick and whose baby was very sick. After reading that post, my loving, self-sacrificing, 80-year-old parents jumped in their car and drove five hours to come help her out so I would stop worrying about her.  (See where I get my caregiving tendencies?)  It was such a relief to have them here so I knew Sarah could get some much-needed rest.  They kept the baby at my house, and I could help from across the room or up close if I was careful to stay away from his little contagious face.
My parents needed to get home for some things previously planned so they left early Friday morning of that week (two Friday’s ago).  A few hours after they left, my daughter sent me a text, “do you have a spare stethoscope?  I think Eli is wheezing.”  Though I didn’t have a spare, I immediately took what I had and went over to check his breathing.  In doing so, I walked into virus city but I took the risk because I was worried about the baby.  I’m glad I did because he was certainly wheezing and, in fact, ended up in the emergency department a few hours later to get breathing treatments.  I stayed away from them after that but it was too, late–the alien invader cold virus breached my armour and attacked.  I now have a horrible cold and I’m miserable…and feeling guilty and worried.
Several other members of my family had also been sick last week with colds and one developed an intestinal illness which was a totally new bug to throw into the mix. We almost postponed the family get together; but by yesterday morning, most were feeling better so we decided to have a “no touch” celebration.  Honestly, I think I was the sickest one there so I hope no one gets sick from me!  We occasionally forgot and gave a hug but for the most part, we did not touch.  Since the baby had finally gotten better, the only ones who could touch him were his parents and me (other than my parents who had no symptoms of illness and had already been exposed to him) which was disappointing for the others.  I was ill but from the baby sharing his germs so he could not be re-infected from me.
As I sit here, now, sneezing almost continuously, my biggest fear, of course, is Lynn.  I can’t help but share these germs with him.  I’ve washed my hands till they are cracked from dryness.  I put a towel over my shoulder when I have to move him to keep his face away from my clothes. I turn away when I cough and sneeze but he’s living in my germs.  I give him Zicam around the clock. However, I fear it’s just a matter of time before he is sick, too.  In fact, he said his throat was a little sore this morning and his use of nose spray has started to increase.
Everyone hates to get a cold and hates the miserable symptoms that cause sore noses, difficultly sleeping and other unattractive and inconvenient maladies.  However, for a person with MS, it carries even greater concerns.  MS is considered to be an autoimmune disease because the immune system in an MS patient is “confused.”  Where in the lives of a person who does not have an autoimmune condition, T-cells and other infection fighting agents are good guys, in a person with MS, they are traitors.  Instead of helping the body, they attack it.  Think of it this way…
Two little countries are located side by side and they hate each other with a passion.  Both countries train their soldiers to attack and destroy any soldier from the opposing country on sight.  The two country’s inhabitants have unique skin colors.  Country-A inhabitants have yellow skin and Country-B have green.  Finances are an issue one year and Country-B is low on resources.  They came up the strategy to put a blueing ingredient in the water of Country-A.  The next morning when Country-A wakes up, everyone who has had water to drink during the night has turned green.  The rest of the “yellow” inhabitants think they have been invaded and began to attack and kill the “green” invaders.  Thus they destroy themselves and the Country-B gains control.
Something similar happens in MS.  The person’s immune system senses danger and attacks itself so when a new infection is introduced, more “defenders” are produced by the body and these new defenders not only attack the invaders but also the person’s own body.  That makes the individual susceptible to having an exacerbation and developing new MS problems. 
That happened to Lynn two years ago.  He got a bladder infection that was not treated correctly. He lost his desire to eat and his body’s inefficiency to fight the infection led to him being hospitalized.  Once he was hospitalized, he developed pneumonia due to an accidental aspiration from the feeding tube he had, and between the two infections (respiratory and urinary), his body engaged in WWIII tactics which nearly cost him his life.  He has just now gotten back almost to his pre-hospitalization level but still has a way to go even now.  Before hospitalization, he had better balance, could use both hands, and had voluntary control of urination. Now he has none or limited ability in these areas.
So, it is with great concern I wait to see if my cold leads to an illness in his body.  I’m also concerned because he currently has a stage III skin breakdown on his right buttock.  Therefore, his body is already under attack trying to repair the skin damage.  I fear that adding in the defense of a cold will be over whelming. 
I’ll just have to wait and see and ask for prayers of defense.  I know if he gets sick not only will he need prayer support but so will I.  (He becomes even more needy when he doesn’t feel well and I’m already on overload from that front as it is!)
On a more pleasant note, I look forward to two more family events this coming week and one next week for New Year’s Eve if he isn’t sick. 
In closing, I wish you and your family a very MERRY CHRISTMAS and God’s blessings on your new year!

Warning! I have a Cold! Read More »

Pass It On

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One of the hats I wear as the caregiver support for Lynn is to help him promote his book.  As I have mentioned before, when he no longer was able to work, he began to write. His first book, “Rising Tide,” was published a couple of years ago.  Those who are not in the publishing industry assume that the publisher promotes the book.  Not so these days as the only books that are advertised or extensively promoted are those from already known authors. Therefore, Lynn spends a great deal of his day contacting book clubs who might be interested in reading his book and offering them a free promotional copy.  He also writes a blog about writing and interacts with book sellers.
One of his contacts who writes a blog about authors is featuring him and his book this week.  Check it out!   This is a link, www.kaitlinmichelle.com, to a feature article which includes a short interview with him as well as an except from the book, the official trailer, and a short bio about Lynn.  Due to the limitations he has from MS, Lynn is limited in marketing his book to the use of social media.  He is trying to start a grassroots movement to promote his book, “Rising Tide.”  I hope you will check out the article and pass it on to others who enjoy reading.

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Whom Do I Choose?

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I am feeling so frustrated tonight because my good sense tells me not to do something I really want to do but my heart is longing to do it.  Here’s my dilemma.  I want to be a caregiver to two different people (actually three) and it’s tearing me up that I can’t.
My grandson is very sick tonight.  It probably won’t amount to anything but he’s only six months old and has a very bad upper respiratory track infection.  He can hardly breathe, his mucus drainage is so thick he’s choking on it, and he can’t drink (he’s only had nine ounces of milk today) so he’s becoming dehydrated.  His mother (my daughter) is scared to death. Her husband’s cousin died at this same age of an upper respiratory infection and she’s afraid it will run in the family so she doesn’t plan to sleep until he can breathe.
She had him in the emergency room last night unable to breathe and she’s had him to herself all day today so I’m sure she has not slept since yesterday.  That means whether she wants to sleep or not, she will at some point and when she does she needs to make sure that little Eli is safe.  I’ve coached her on some tricks-of-the-motherly trade to try to help her with the approaching night (everything from poweraide for hydration to sitting in the shower steam to open up his head).  I’ve any suggested using the carry sling to hold him against her tonight so when she falls asleep, the baby will not fall off her chest.  I’ve offered prayers and my limited experience to her over the phone, but what I really want to do is to go over there and keep him for a while so she can rest. But, I can’t do that…
With MS, one of the big risks is contacting infections.  MS is an autoimmune disease meaning that the immune system does not function properly.  People with MS must avoid getting sick because it’s more difficult for them to recover.  Lynn, for example, will take a month to recover from something most people are over in three days.  His lung capacity is compromised due to weak diaphragm muscles.  Therefore, if he gets a cold he has a more difficult time coughing up secretions and keeping from getting pneumonia.  Therefore, we don’t go out much in public during cold and flu season to limit his exposure.
We were already exposed to Eli all weekend.  I kept him Saturday afternoon and then again Sunday morning.  At those times he wasn’t eating much but he did not appear the least bit sick.  He was happy, breathing well, and sleeping without any congestion.  I was very surprised when his Mom called to warn me he was sick and Lynn had been exposed.  Oh well, you can’t avoid everything.
But here again, MS gets in the way of what I want and need to do.  I want to help my daughter and grandson but I can’t because Lynn is my first priority and responsibility.  I worry about my responsibilities getting in the way in meeting the needs of my other family members too.  My parents are around eighty years old.  They are very healthy still but every time the phone rings, I’m afraid I will hear that one of them is sick or injured.  I will want to go to be by their side but what will I do with Lynn? If I take him with me, his wheelchair can’t go into their home. He couldn’t stay alone at a hotel because he can’t do anything for himself.  I could maybe get someone to stay with him but no one in the family really knows how to care for him 24 hours a day and besides, everyone works or has other responsibilities.  I could have my parents brought here but I know they would not want to leave home.  It bothers me a great deal because I’m torn between who I get to help when I want to help them all if they need it.
So I deal with it by not thinking about it.  (visions of Tara and Scarlet O’Hara run through my mind…”I won’t think of it today.  I’ll think of it tomorrow.”) I know one day I’ll have to make a choice but that day is not today.  I just pray I’ll make the right one; the one where I can do the most good and the least damage.

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Transition

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I got a text message early this morning from my son saying that his fiance’s mother, Leslie, was beginning to transition toward her death.  I hadn’t heard dying referred to in that way before but it made a lot of sense as I thought about it.  There are specific changes that occur as our bodies begin to stop functioning and prepare us to die.  For those who are followers of Christ Jesus, it prepares them for accepting their heavenly bodies and begins the process of ashes to ashes; dust to dust.  Tonight at 10 p.m. she finished her transition and she has now gone home to her heavenly family.
Anticipating his call (admittedly, not quite this soon) that she had died, I’ve thought a lot about how we transition our lives.  For Leslie, she no longer suffers.  She is being welcomed by family and friends who have gone before her and by a heavenly Father who’s love surrounds her in warmth.  She has no more pain, no more worries, no more fear.  Her transition to the purest form of bless possible is now complete.
For her family, they transition to sadness mixed with some relief.  They are relieved her suffering was so brief (she was diagnosed with lung and bone cancer just two months ago) but sad because they cannot have her with them physically anymore.  There will be many adjustments for them to make since my son and his fiance lived with her and her husband.  They will each assume new roles and new responsibilities.  It will be tough on all of them and has been since she got sick but they have also grown and matured so much in the last few weeks.  I am so proud of both my son and his fiance in how they have worked together and handled this difficult time.
I also have thought about the transition that occurred in our lives when Lynn was diagnosed with MS; then again when he fell and was left helpless on the floor for several hours till I could come rescue him; and then again when he came home from the hospital so weak and de-conditioned that he could not sit up on his own or do any self-care. We transitioned from being a couple fully involved in our church to a couple who only attend church electronically now.  We used to help others and now we need others to help us.  He used to build and create with his hands and now he must do so with his mind.
Transition implies a gradual change from what was to what is.  After the transition, you’re left with a new reality.  It takes a lot of adjustment and sometimes it’s a struggle. Sometimes it’s a welcome change; other times we go kicking and screaming but in time, if we’re wise, we accept it and move on.  We take a deep breath and move forward taking it one step at a time without looking too far ahead.
Leslie has now transitioned into her new life and her family are transitioning into theirs without her.  I pray for comfort and peace for them all and am thankful for their faith and the knowledge that they are not alone.

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Hope you Enjoyed Thanksgiving

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I am very fortunate that almost everyone in my husband’s family likes to cook because I don’t.  I enjoy eating but I eat to live; I don’t live to eat…except maybe for desserts. 
Early Thursday morning, my wonderful sister-in-law arrived at my house to start the Thanksgiving feast.  She did the entire meal, start to finish, and it was absolutely delicious.  I am so thankful that she will do this for us. 
Lynn cannot access anyone else’s home in our family and therefore, it would be difficult, if not impossible, for us to go somewhere else other than maybe a restaurant. This year we also had the challenge that my father-in-law is now blind due to macular degeneration. Therefore, we have learned to be creative. At one end of the table we made a space for Lynn’s wheelchair and at the other end, we made sure everything was set in an “easy to locate” design.  It worked.  We have great food; everyone ate their fill, and I think we each had a plate for dinner as well.
Lynn and I have much to be thankful for. Though he cannot do much for himself, he still manages to stay productive with the help of family and friends who help him type his manuscripts.  When they are not around, he slowly works on marketing his first book through the internet.  This activity has kept him working toward a goal and maintained his creativity.  Furthermore, he has not had an exacerbation in two years and he is gaining strength gradually with his diet plan and exercise.
I am still able to work from home and keep our income source which is essential in order to keep a roof over our heads and access to the things we both need to make life comfortable.
Our church family continues to take care of us in every way possible.  They are awesome and remarkable in all that they do for us.  We are so blessed to have them in our lives and to have a Lord and Savior who meets our needs everyday and blesses us in abundance.
We have family who love and care for us and who are devoted to lifting us up at all times.  Lynn’s mother, sister, and son come every week to spend time with him which takes a burden off me.  My daughter now comes over two or three times a week to type for him.  My son helps as he can (though with his fiance’s mother, whom they live with, is terminally ill; therefore, most of his time now must be devoted to helping them–for which I am also grateful that he’s there to do so).  My son-in-law takes great care of our daughter and helps us often around our house.  Our new daughter-in-law takes good care of Lynn’s son and loves us all.  And last but not least is the blessing our wonderful grandson who has spread joy throughout our lives in so many ways.
Our blessings are too many to list and more than we deserve but for each we are grateful.  I hope your Thanksgiving was also blessed.

Hope you Enjoyed Thanksgiving Read More »

Guest Blog

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The following story is shared by one of my readers.  Though his wife did not have MS, his struggles as a caregiver are much like ours. 
My Struggle and Experience as My Wife’s Caregiver
by Cameron Von St. James
After my wife Heather was diagnosed with mesothelioma, I became her caregiver, and experienced all the struggles that go with it. Many times, my wife has tried to bring up the experience, stating she cannot imagine what I had to face, but I’ve only spoken to her about it once. Now I hope to share a bit more on my experience to help others who are facing similar difficult battles with disease.
Our only child Lily was born just three months before my wife’s diagnosis. She was a blessing, and we were so happy to welcome her into our lives. That happiness was cut short when the doctors diagnosed my wife with cancer. I was lost, unsure of how we could ever cope. I felt ready to breakdown and give up, just as the doctors began discussing medical options. That was the first day I remember feeling engulfed by the grief and stress of the situation, but it wouldn’t be the last.
Rage and fear were all I knew after the diagnosis, and I had no idea how to direct it, so I ended up taking it out on others, cursing and shouting. Perhaps it was the knowledge that I needed to remain strong for my family and the desire to not let Heather see my weakness, but I learned to control my anger so I could hide my fears from my wife and let her know she could rely on me.
Every day seemed like an impossible climb. I had to work my regular job, care for my wife, our daughter, our pets and our house. In the beginning, I was sure I would fail. I didn’t know how I would ever succeed, but eventually I learned to prioritize and accept the help that others offered us. Many of our family and friends helped us during this time. Without them, I am sure I would have drowned under the long list of tasks. Even with their help, each day was a battle.
One might think that a bit of time away from Heather and Lily would have been a nice break, but that was the worst time I can remember. Heather had to go to Boston to undergo a risky mesothelioma surgery. We sent Lily to South Dakota to stay with Heather’s parents and then Heather joined her after her surgery to recover and prepare for chemotherapy and radiation. Two months they were gone, and I was alone, as I had to remain behind to work and take care of the house. I managed to visit them only once.
After work one Friday, I drove through the night to reach them. Maybe it was my luck or maybe it was just life, but there was a snowstorm that night as well. I managed to get a few hours of sleep in the car while the plows did their best the clear the roads, but it didn’t help much. I was still exhausted when I arrived Saturday morning. I spent all of Saturday and some of Sunday with Heather and Lily before driving back home to return to work. I hated not being with them for those two months, but it was the right choice at the time. I couldn’t have given Heather and Lily the care that they both needed while working full time.
Everything that happened during this time was a challenge and a struggle but it all had to be done. The struggle taught me to accept help and take comfort in being able to make choices and decisions, even though they were difficult. Through everything, we persevered, and my Heather is still healthy after more than six years. I truly hope that my story can let those who read it and are struggling with cancer find hope.
 
Addendum: 
Heather and I participated in a short video about her cancer experience, and I thought it would make a great follow up to the article of mine that you posted a while back. We’re hoping to use this video to continue to spread hope and awareness to those who need it. If you wouldn’t mind sharing it with your readers, Heather and I would be so grateful. Here is the link to the video: Heather shares about mesothelioma (www.mesothelioma.com/heather)
 

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Quiet Time

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One of the rarest privileges I have as a caregiver is quiet time.  When I’m awake, I am always listening for his,”Hey, Sweetie,” call that says I’m needed.  During my work day if I’m not taking care of his needs in some way, I’m working.  From the moment I get up…no actually, twenty-four hours a day, I am being called on to either meet his needs, work, or care for our home and personal needs.  Twenty-four hours a day EXCEPT for the time between 10:00 p.m. and when I wake him for dinner around 1:00 a.m. (though tonight I’m letting him sleep longer so I can write this.)
Those three hours are my escape time.  For those three hours, I know (most likely) I can do whatever I want without being interrupted.  During that time I usually finish whatever work is still waiting for my attention, I cook dinner, prepare his meal for the next day, make smoothies for the next day, clean the kitchen, take a shower, eat my own dinner while I listen to a book (my primary form of entertainment) and occasionally throw in a few other chores.  He used to get annoyed at me for letting him sleep so long but he’s finally realized this is MY TIME.  I don’t otherwise have any period of the day where the time is my time and mine alone. 
My time alone is very precious to me.  I don’t want to share it by making phone calls (not that too many people are up socializing that time of night anyway).  I like the opportunity to finish what I’m working on.  I like being able to finish a complete thought without being interrupted.  It’s time I have control of and I can use as I see fit.  Granted I am usually working, not relaxing, but just having control of the time is so much better than the frustration of constant interruption. 
I realize parents maybe thinking that it’s the same for them but it’s not.  With a child, they sleep better and longer hours (I’m up every two – three hours all night every night) and children often go to a friend’s house to play or be handed off to the other parent (if one is in the house).  Not so for me.  Even when others are here, I’m still the primary caregiver and still working around his schedule and needs so it’s not my time.  Therefore, when he talks about making me promise to get him up after two hours, I just can’t bring myself to do it.  I think he’s finally gotten the message that these three hours are my sanity time.  If I didn’t have them, I might actually be bald from pulling my hair out or have had a break with reality.
He’s been asleep now since 10 p.m. so I really do need to go get him up for dinner plus I will get up too late in the morning to have a full day if I don’t get this last job of the day done… so I have to bring this to a close…but I love this time so much that it’s really difficult to bring it to a close.
Oh, well,….

Quiet Time Read More »

They're Married and Lynn was There for it All

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Before every big event, there is always the fear that MS will get in the way of its enjoyment.  I am pleased (and relieved) to say that did not happen during any of the festivities associated with Lynn’s son’s wedding.  For days prior to the event, Lynn would comment on how he hoped his Rebif shot would not make him so miserable that he could not enjoy any of it.  He was determined to be there and I expect he would have been there if it meant going by ambulance but fortunately that was not an issue.
Friday was the rehearsal lunch at our home.  Once again our church came to our rescue and a group came and set up for the meal, while others prepared the food and brought it to our home hot and ready to eat.  It was prepared according to Lynn’s dietary restrictions so he could fully enjoy the meal.  It was delicious.  Following the meal, this group also completely cleaned up and cleared out so that I didn’t have to do anything but take care of Lynn’s needs.  I can’t tell you how grateful I am for them doing that.  I was so freaked out about having to prepare the meal and get everything ready for up to twenty people to arrive at our home.  Knowing Lynn would need a lot of assistance I couldn’t imagine being able to do it all.  In fact, I know it would have been impossible without me having a complete breakdown. I asked two of my friends for suggestions on who might be able to cater and before I knew it, all was arranged.   What friends and what a church family!  Our blessings from them overflow!
After lunch, we were a little late to rehearsal but got there in time to learn what was needed from him.  Lynn was feeling pretty rough by that point so we were a little worried about the next day.  With the help of some Valium to decrease his spasticity and a nice warm shower, I put him to bed for a rest and made sure the remainder of the night he relaxed.

Saturday morning, he woke feeling decent.  He did a limited exercise routine, ate breakfast and laid down to rest till it was time to get ready.  All the groomsmen were western characters so I made sure I had extra time to get him assembled into his outfit. 

As you can see, he looked quite dashing.  We actually made it out the door in plenty of time to get there which was a good thing since Richmond was having a marathon and you literally couldn’t get to the building where the wedding was being held!  Finally by cutting through one of the barricades and taking an alley we got to our destination.  Then into the freight elevator, through the obstacle course, to the ballroom.  He could not join the rest of the groomsmen since the balcony area was not handicap accessible so we hung out in the coat room till they were ready for the men to come into view.  He was Eric’s best man and managed to fulfill his duty of giving Eric the rings without losing them. 
Eric and Erin wrote their own wedding vows and they were priceless.  The promises they made to each other were so “them.” The entire ceremony maybe took ten minutes and it was wonderful.  It was fun, loving, and memorable.  They included the families on both side in all their planning and I couldn’t be prouder of how thoughtful they were to Lynn’s needs.  He was included in everything.  The hotel staff knew about what he would need and made sure he was well taken care of.  Though I was right there to take care of what he needed when he needed it, all I had to do was catch one of the staff’s eyes and they immediately helped me get what I needed. 
The care that Eric and Erin took in planning this wedding was very evident as they considered Lynn’s accessibility, his dietary needs, and his fatigue.  Through their thoughtfulness, he was able to be fully involved and today, the day after, he is not in the midst of extreme fatigue.  He is tired but then so am I.  We are both very grateful that the wedding went so well and Lynn was able to fully be a part of such and every important event.  Lynn adores his son and is so proud of him.  We love our new daughter and we look forward to many years ahead with the two of them. 
Now only one child left to marry off and I wouldn’t be surprised if that one isn’t hitched within the year as well. We look forward to that union as well and feel so fortunate that all three of our children have found partners who love them and are already part of our family.  We are very blessed.

They're Married and Lynn was There for it All Read More »

There are Worse Things Than MS

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I got a text message from my son this week asking us to pray for him, his fiance, and her family.  His fiance’s mother was recently diagnosed with stage IV lung cancer that had spread to her bones. She has had a month of radiation and a couple of weeks of chemotherapy but she is not tolerating the treatment well (she has lost 28 pounds in a month and was already very small).  The doctors are recommending that they stop treatment and consider hospice.  Her only child, my son’s fiance, has been holding up extremely well during all this taking on the burden of support and caregiver for her mother; but it finally got to her when she was asked about a “do not resuscitate” order. 
My son and this young woman have been dating for about six years so I’ve grown very fond of her and when he shared this information, it really hurt my heart to think of her upcoming loss and what her mother must also be considering.   Next weekend my step-son (Lynn’s biological son) is getting married.  I have to wonder whether my son and his fiance will now rush to get married while her mother can still participate in the wedding.  It would be a very simple affair I’m sure since time will not allow for planning but I can imagine the desire of the daughter to have her mother there and the desire of the mother to see her daughter married.  Suddenly plans change when your focus is narrowed in on time and what’s of utmost importance.
I’m fortunate that Lynn is currently doing well.  He’s stronger and better able to move than he was at this time last year which is a blessing; however, his ability to do things for himself is no better and may actually be a little more limited.  But still, he is doing better so I’m not focusing on avoiding readmission to the hospital or making plans for greater support.  However, I know that one day, that will occur…just not now.
Sometimes looking at the long road ahead and the expectation that as he needs more support, I’ll be getting older and less able physically to provide the care he needs it becomes overwhelming.  On the one hand I hope that he won’t linger in a state of total dependence on anyone while he lies in bed unable to move or do anything on his own.  I know he had rather die than end up like that so if that point occurs, I hope he dies quickly.  But I hope that is a very long way off because even though it takes so much out of me to care for him as I do, I had rather have him as he is now than not at all.  We still share so much and still find joy in our lives and I hope that the blessing of being together continues for a long time to come.
So when faced with the awareness of how fleeting life can be, I realize once again that there are much worse things than having MS.  What he has is a nuisance but he still has life and joy and hope and that makes MS just A thing not THE thing.

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National Family Caregivers Month – Background

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In 1994, the National Family Caregivers Association began promoting the celebration of family caregivers during the week of Thanksgiving. President Clinton signed the first presidential proclamation in 1997 and every president since — Democrat and Republican alike — has issued an annual proclamation appreciating family caregivers. As interest grew in family caregiving issues, National Family Caregivers Week became National Family Caregivers Month.
Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care.  Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.
NFCA coordinates National Family Caregivers Month as a time to thank, support, educate and empower family caregivers.  Celebrating Family Caregivers during NFC month enables all of us to:

  • Raise awareness of family caregiver issues
  • Celebrate the efforts of family caregivers
  • Educate family caregivers about self-identification
  • Increase support for family caregivers

“The true strength of the American family finds its roots in an unwavering commitment to care for one another.”
 President Barack Obama, NFC Month Proclamation 2009

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Information from WeGO Health community

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This announcement was sent to me for possible inclusion on my blog.  If you’re interested in joining the WEGO Health community www.wegohealth.com , it seems to have a lot of resources.
Announcing the 2012 Health Activist Awards!
We’re excited to announce the start of the WEGO Health Activist Awards Nominations!  This year, we’re extending the nomination period and we’ve added some exciting new award categories but we’re hoping you’ll take a moment to recognize all of the people who make a difference, offer support, and share information in your online health community. 
Not sure who to nominate?  Recognize your favorite blogger or tweeter, the person who always make you laugh, the community member who’s always there to offer support, or those who inspire you to do more – we’ve got an award for everyone!  If you can’t think of someone to nominate right this minute but want to be kept in the loop on the Health Activist Awards, join the WEGO Health network at www.wegohealth.com – we’d love to have you as a member!
Cheers,
The WEGO Health Team

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"I Know Someone With MS…"

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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.

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Hygiene and Grooming – Sweating the Small Stuff

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Today was Lynn’s six-month visit with his dentist.  Tonight, after his shower, was time to cut his fingernails and file them.  Between the two activities I began to think about all the small things a caregiver takes over for their charge that are so important to that person’s self-image and feeling of being clean and neat.  Most of these things are those intimate tasks that you shut the door to the bathroom to perform as you scrunch up your face and look in the mirror or drool as the toothpaste runs down your chin.  They are also those tasks that on TV comedy skits get a “yuk” when it’s mentioned doing them for someone else but which if you can’t do them for yourself, are demoralizing if they do not get done.
Mouthcare
No one wants bad breath or to be speaking to someone with a big chunk of spinach stuck between their teeth.  Nor is their anything more annoying that a piece of meat stuck between your back molars and your tongue can’t work it loose.  Right?  Absolutely!  So dental hygiene is really important for everyone; not just to keep your teeth so you can chew food but also because you want to look attractive and not disgusting when someone speaks to you.   It’s one thing to floss and brush your own teeth but it’s quite another to do someone else’s.  Sticking our big fingers into someone else’s mouth to floss is pretty difficult–there’s just not much room in a mouth. Knowing when you’ve gotten all the chunks out is another–you can’t always see that stuff; sometimes you have to just floss, rinse, repeat till it doesn’t feel weird anymore. 
Dental care is very important for maintaining teeth and gums but also, as I mentioned before, for the person’s self-esteem and comfort.  When your teeth are dirty, you feel dirty all over.  You don’t want to talk up close to anyone for fear your breath stinks.  It can really make a person self-conscious and more isolated.  Something seemingly so small can be very significant to overall mental health and a positive attitude.  So as much as I don’t enjoy leaning into Lynn’s mouth to pick his teeth, brush and rinse, I try to do a good job and not complain, too, much when I have to repeat, and repeat, a process.  I must be doing okay because he got a good report today — “look, Mom, no cavities!”
Manicures
When I hear manicures I envision beauty salons with a manicurist filing fingernails and applying the perfect shade of polish.  I’ve never actually had a manicure but that’s what I think it would be like.  But for caregivers, giving a manicure to someone can be a scary experience.  When you clip your own nails, you know how deep you’re going to avoid pain.  Lynn likes his nails short so I admit, I’ve drawn blood a few times and it’s a really bad feeling to see that red spot ooze up.  He also has a little anemia at times causing his nails and his skin to be similar in color so it’s not always easy to tell when I’m going, too, deep. 
Fingernails though are at least easy to file and cut but for some (and Lynn is one) toenail clipping can be very difficult.  Sometimes I think I need the strength of the muscle man at the circus to cut the nail on his big toe!  But just like cutting fingernails is important to keep his nails from hanging on clothes or tearing or to keep him from scratching himself (or me) accidentally, foot manicures are also important to keep socks (particularly toe socks like Lynn wears) and shoes from causing cuts to the skin from sharp nails.  Foot hygiene is also important because circulation to the foot is often impaired for someone who is immobile so you need to keep a close watch on skin tears, blisters, or wounds so terrible things like gangrene do not set in.  That’s an extreme but if you’ve ever seen a poor diabetic’s foot after a foot ulcer goes deep, you’ll never ignore foot care again.
Hair
Doing hair care, at least for us, is easy.  Lynn has very curly hair and all I have to do is shampoo, rinse and towel dry and he’s good to go.  I think about men who are caregivers for their wives or other female family members.  Learning to curl and style hair must be tough and probably must give way to simple styles for most.  I’m fortunate that Lynn’s sister who cuts hair for a living, cuts and styles his hair when she visits so we don’t have to go anywhere to get it done.  Just another reason I’m glad I’m caring for a guy because you can bet that if I had to care for a woman’s hair, I would have a standing appointment at a beauty salon for her for sure.
For me, learning to shave his beard was interesting.  Learning to shave so that all the hair was removed by cutting against the way it grows was not instinctual.  Also, learning to shave loose skin around the neck or tight places around the mouth or nose was challenging.  He’s growing a beard and side-burns for his son’s wedding and I have been a slow learner on how to shape his mustache and side-burns so that they turn out like he wants. Lucky for me again though that he’s not a girl and wants his legs shaved or his underarms.  To my male counter-parts:  I salute you if you shave legs, underarms, and pluck stray facial hairs.  Those things are important to a woman’s image but must be a pain for you to do.  Furthermore, if you apply make-up, there’s an angel in heaven smiling at you for your gift to your lady friend. Thank you for those efforts on her behalf.
Sweating the Small Stuff
Those are just a few of the little things in life a caregiver takes on that most people do automatically but which become a challenge when you’re doing them for someone else. They’re very important though and therefore, well worth learning to do.  I certainly hope when my day comes and someone needs to care for me, they will do the small stuff, too.

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Just Say "No"?

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I have never been one to find it easy to say, “no.”  I’m a people pleaser, I guess, but I find delight in making others happy and I enjoy helping people.  However, I guess for my own sake, and, maybe sometimes even for theirs, I should learn to say ‘no’ but how do you know when it’s the right time to do that?  Here’s some examples of times I’ve found it hard to say ‘no’ to Lynn.
When Lynn got his “back pay” from Social Security.
As is true for everyone, it took us long time to get social security benefits.  We had to wait until we could go before a judge who could see for himself that Lynn was totally disabled. So when he got his check, it was rather sizable.  At that time, he had not been in a wheelchair very long and still had good use of both arms.  Lynn loves to surf fish and he was looking ahead to vacation.  He wanted a way to still be able to surf fish and wondered if there was such a thing as a 4-wheel drive wheelchair.  He did some research and found just what he was looking for…in South Africa.  It could go over sand, climb steps, elevate his seat so he could look over things, had headlights, a horn, ahh…it was cool.  It gave him hope that he could continue to do what he enjoyed most in life for leisure time–fish.  But it was VERY expensive!  It would wipe out all the back pay if he bought it.  He really wanted it. To him it was a symbol that his disability would not wipe out his ability to have fun.  It represented freedom and gave him the feeling of being in control and out-smarting MS.  However, he felt guilty about using all that money for a toy.  He looked to me for permission to buy it.  What did I say?  “Yes,” of course.  How could I take away his hope? It was, after all, his money and not money we had already been counting on to pay bills (though secretly, I had several credit cards I wanted to pay off that I had run up with costs associated with his care). But, the main reason was I just could not take away his hope.
Was that the right decision? Yes for his mental health; no for our finances.  To this day, that machine has not worked.  We took it on one vacation and it would not move in the sand. We  sent the motor back to South Africa in March of this year and have yet to get it back.  Right now it’s a huge obstacle in my living room that has no motor and cannot function at all.  Had I known this, I would have said ‘no’ but not knowing this, his hope was more important to me than the cost.  Therefore, I still think it was the right decision because having hope when you are disabled is essential to life.
Purchasing a New Lift Device
Once again I’m faced with whether to say ‘no’ or participate in hope and once again, I’m going with hope.  Lynn wants very much to stand and if possible to walk, again.  Who wouldn’t want that?  He’s convinced that if he works his muscles well enough that he will be able to do so and that it is not the MS that has caused him not to be able to stand but the deconditioning he experienced when he was hospitalized two years ago for so long.  The doctors can’t say for sure though they believe that progression of his MS is the reason for his immobility.  However, with the change in his diet to following the Terry Wahl MS diet and his dedication to exercise, he truly is moving more than he has in years. Who’s  to say that he could not eventually stand if he was able to recondition all the necessary muscles?
The problem with reconditioning muscles necessary for standing is that there are so many of them.  Doing exercises to isolate one muscle group at a time requires considerably more energy than he has available.  Therefore, once again he has done his research and identified a device that will help him stand with assistance.  It’s called a Rifton TRAM. It allows the caregiver to put a saddle under the hips of the patient and gradually lift them to a standing position.  With the saddle in place, they have support in the amount needed to bear weight.  The advantage of this is that by bearing weight, he can activate more muscle groups plus the stress on the bones, makes the bones stronger.  Osteoporosis sets in when there is no stress to the bone and that causes bone deterioration which makes the person more susceptible to fractures.  So by using the TRAM not only could he strengthen muscles to stand on his own but could help prevent future bone fractures. 
We are in the process now of getting the information necessary to the insurance company.  However, even if they do not approve it, he still wants to buy it because he’s convinced of what he can achieve with it…and who am I to say he can’t?
What’s going through my head though?  Will he be crushed if he cannot stand and go into a deep depression?  Can we afford to pay the full price at a time when year-end bills are coming?  His son’s wedding is in four weeks and we have to prepare and pay for the rehearsal dinner as well as Lynn’s clothing and get their wedding present.  Christmas is coming which means presents.  And of course, there are the multiple bills that need to be paid.  Knowledge of all these needs causes me a lot of stress as I agree to buy the TRAM even if the insurance won’t pay. 
I really want it to work for him but I keep remembering that behemoth wheelchair in my living room and don’t want another useless device in my house so agreeing to this takes a lot of faith on my part.  I know however, that God will take us through whatever lies ahead and if it doesn’t work, He will help us both deal with that.  If it does work, then He will be gloried in helping us to get the device through faith. 
So, once again, I just say, “Yes.”

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