Challenges

Blessings from Pain

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Many caregivers find strength, comfort, and support from their faith. Physicians report that patients who have strong belief systems recover from major events quicker and seem to have better success rates than those who have no belief systems.

I’m sure you have heard others reference the saying “turn lemons into lemonade.” It implies taking something bad and turning it into something good. Our pastor challenged us to think along those lines but with a different twist. When something has you down or something bad/inconvenient happens, try thinking about why that’s a good thing. I have to admit I have difficulty doing that much of the time but each day I try to think of at least one thing good about that day, be thankful for it and share it on my Facebook page. It helps me to, at least once a day, think of something positive. I’ve been pretty negative lately because Lynn and I have not been feeling well and I’ve spent three weekends in the last two months in the emergency department without any answers regarding what is causing me to have abdominal pain. I know it’s nothing serious but I don’t know what it is and I’m getting tired of it. Anyway, I’m also tired of being so negative. Therefore, my post today is my attempt to take this challenging period in our lives and make it into something positive. Here goes….

I am blessed that I have been in the hospital three separate times for three overnight stays because it has allowed my family and me now to have a trial run on what we would do if I was sick for longer than overnight.

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I Can’t Just Get Sick

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I had a scare this week thinking that I was about to experience the joy of food poisoning. As I was giving Lynn his bath, I started feeling really nauseous. Then my stomach starting burning and feeling crampy and I started sweating—all the tell-tale signs of food poisoning when you’ve recently spent hours sampling leftover food as you clean up from the day’s festivities. As it turned out, it did not develop into the dreaded torture of food poisoning and probably was a reaction to eating too many rich food products the same day on top of eating them several days previously. However, the experience brings into focus that as a caregiver, I can’t just get sick. As I’m preparing to be sick, I have to prepare Lynn for me to be sick. Let me tell you; that just does not seem fair….
Continue reading at https://multiplesclerosis.net/caregiver/i-cant-just-get-sick/

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Tested By Fire

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I was listening to a Bible commentary today and the commentator was talking about how God takes us through trials in life that prepare us for events yet to come. He described how precious metals are often put into fire for purifying so that the impurities are removed and the remaining metal is stronger and better able to withstand pressure and stress thereafter.  I can see how that has been the case in my life.
People often ask me how I do what I do.  How can I survive on five hours of sleep a night, hold down a very intense full-time position that often requires more than 40 hours a week to complete but yet be there night and day to take care of Lynn without losing my mind? Now, there are days when that last part might not be true; days when I think I am losing my mind, but for the most part, I’ve learned to take each day one minute at a time and just deal with whatever is the greatest need at that particular moment. I realize, I’ve learned to do this by being tested by fire throughout my life.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-tested-by-fire/

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Finding the Will to Live

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Let me start by saying that I’m not a psychiatrist nor a licensed counselor so what I mean is based on my own experiences in talking to others with disabilities, my own experience with family members, and my personal beliefs. Therefore, you may or may not agree with me, and that’s fine because this is a very delicate topic and one which creates a lot of emotion in people.

When a person has a chronic health condition that cannot be cured, depression is prevalent. When the disease also affects the neurological center of the brain, the likelihood of depression is even more significant since the natural chemical reactions that would typically help the person stay balanced may be impaired. Therefore, for people with secondary or progressive MS, depression is common and often a struggle.

Loss of Direction or Purpose:
Though MS can affect children and teenagers, it most often affects adults. Once we reach adulthood, we have created in our minds our vision of what our life will be. We’ve thought about getting married, having children, getting a job, or establishing a career. Maybe we have bought a home and have a car(s), so we have a debt. We may have gone through years of school or training and “paid our dues” ready to launch into the rewards of our efforts and then something like MS hits. Maybe it’s been there lurking just under the surface with some minor annoyances like in Lynn’s case, or perhaps it hits with a vengeance, and an immediate loss occurs that may or may not be permanent. When that happens, the breaks are put on, and both the person with MS and their caregiver slam into a wall.

In addition to coping with the loss of function, there is also the loss of the dream. Lynn was a musician, an excellent tenor, and an incredibly talented carpenter and builder. He could do so much, but most of it required physical labor and dexterity. Over 2-3 years, Lynn’s MS rapidly progressed. His doctor could never quite say if he had Secondary Progressive MS (SPMS) or Relapsing Remitting (RRMS), but I think he felt it was Secondary, and we hoped for RRMS because let’s face it, there is nothing out there if you have SPMS or Primary Progressive (PPMS). Lynn was seeing the doctor every three months. Each time his abilities (other than his mind) were a little slower than before. Over 18-months, he lost his job and his ability to play musical instruments or to hold a musical note for an extended time.

He lost his identity, his purpose, and his planned direction for his life. He was the man of the house, the protector who could not protect but instead needed protection. He was the builder, the fixer who suddenly needed all things done for him. He would try to explain to others what to do and became frustrated because it would have been so easy for him to do it himself…before. Over and over again, he would say, “What good am I anymore?” “What am I supposed to do now?” He was angry, scared, and felt physically bad. He could see no purpose for his life and became depressed.

Unwelcome Changes
While he struggled with, “What am I supposed to do now?” I struggled with, “How can I do it all?” I was counting on him to build our new house, bring in a good income, help me keep up with three children, protect us, fix things, maintain the home and car and yard, and so much more that now was MY responsibility. And I didn’t want to do it. I was angry. I was scared. I was tired. I was overwhelmed. I was depressed.

Learning to Live Differently
We set about learning to live with his disability. What worked before did not work now, so we had to get creative in how we accomplished the tasks of daily living. I had so much to learn that he used to do. He had to learn patience and how to tell me what he needed. Our lives changed completely. I found a new purpose in being his caregiver, but he struggled to find any meaning. Fortunately, his son suggested he try to write fiction since he used to love to write when he was younger. He tried it and now has published two books, Rising Tide and Eden’s Wake. He gets up each day and “goes to work” either writing or marketing his books. It provides him with a purpose and a sense of accomplishment, which is what I think is the most significant problem that needs to be fixed for most people suffering from depression. The person goes from having a purpose in life to not having one that they can identify.  Their job is gone; they can’t support their family; they cannot perform the usual roles of marriage or parenthood as they did before, positions that held significance for them before are now limited.  So they flounder in fear, sometimes self-pity, hopelessness, worthlessness, and all those other negative emotions. I think it’s that loss of purpose that makes so many think of suicide.

Pain and Suffering
In addition to the loss of purpose, there is often the pain and suffering of MS. The public doesn’t hear about the pain and suffering. They hear MS and think of difficulty walking. They don’t think about the constant fatigue that makes you want to stop breathing due to the effort, the pain of muscle spasms and spasticity, the overall malaise and heavy feeling and something severe pain from nerve irritation. Pain and suffering that does not respond to treatment. Pain and suffering that seems never-ending and which may very well be.

If this person was a prisoner of war and people heard of treatment happening to them in the same manner that someone suffers from MS, they would wonder how they go on with life. They would see suicide as a justifiable option. They might also see it as the only option.

Reason to Live
However, I hope if you have MS that you do not give up so quickly. This is the sensitive part. My faith keeps me from seeing suicide as a reasonable option. For me, committing suicide means giving up on God. It means that I don’t care about how my family would cope afterward.

 Continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-finding-the-will-to-live/

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Letting Go of Unrealistic Plans

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Lynn and I had to make a very difficult decision this week– whether to cancel our summer vacation or to go as planned.  Now, on the surface that might not sound like such a big deal, but it was.  Since the children were small, we have been going to the beach in North Carolina for a week during the summer.  It’s the only type of vacation we take all year. Now that the children are grown with families of their own, we still invite them as our guests to spend the week with us at the beach.  It’s a great way to reconnect and create memories to look back on during the cold winter months.  Over the past two years we have also included both my parents and Lynn’s mom (all in or near their 80’s).  Both of us love the beach and the family time and we had traditions of fishing trips, play time in the pool, and lots of grilling outside.  However, Lynn’s secondary progressive MS has changed all that.
Trips to the beach over the past ten years have been difficult for Lynn.  He doesn’t tolerate heat well so we tried a cool vest – didn’t work, and we tried early morning fishing –took too long to get him ready to go so by the time we got there, it was already starting to heat up.  We rigged ways for him to hold his rod to fish but though he could hold it for a few minutes, his spasticity prevented him from having a good grip or being able to reel in anything that might nibble at his bait so it really took the joy out of fishing.  Plus there was the issue of needing to intermittently cath him every hour or so…  The result was—no fishing. For a couple of years we took fishing gear just in case but last year we didn’t even do that.
We tried borrowing a floating wheelchair so Lynn could get into the ocean.  That was fun… for about the first five minutes.  It took three of us to stabilize the chair in when the surf rolled in so he wouldn’t flip over.  He and the rest of us got beat to death by fighting the waves so we tried just sitting him on the beach.  (Don’t worry; he had a life jacket on.) He, of course, could not get away from unexpectedly higher waves so he got whipped by that process too; not to mention the fun of trying to lift him from the ground up to a floating wheelchair as the sand shifted out from under us every few seconds.  We decided not to do that again.
Last year we found a really nice house that was handicap accessible.  I was so excited.  It thought, “This is it! The solution to our vacation woes”. It had ramps, an elevator, a roll in shower, handrails on the wall, and most importantly a ramp into a pool.  It seemed like the perfect solution except the room designed for the disabled person to use was the smallest room in the house and was filled with furniture.  As any of you know who have traveled with someone disabled, lots of equipment and supplies are necessary for ongoing care.  Therefore, this room just didn’t meet our needs.  We tried re-arranging the furniture so he could get his power chair in and out easier but we were warned not to do that again next year.  We also thought about using the larger downstairs bedroom but were told we could not do that either because his wheelchair would damage the carpet.  Okay, all the added restrictions and challenges were starting to make the place less desirable; then, I found out we could not have a late check out this year.  That was the straw that broke this camel’s back.  It takes three hours to get Lynn ready for the day.  With a 10 a.m. checkout, that meant a 7:00 a.m. get up time if we did nothing but get him ready to go but when checking out, you have to do the packing, straightening up, throwing away food, etc. which takes at least 2 if not three hours when you have 7 people using the house.  And while they all pitched in to take care of their own things, I still had all our packaging and packing to do to get us out the door because everyone else was busy with their own. With a five hour drive home, getting up six hours before 10 was just too much for me to accept.
So we are canceling our vacation.
Continue reading at http://multiplesclerosis.net/blog/caregiver-perspective-letting-go-of-unrealistic-plans/

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Am I Competent to Do This Job?

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I earn a living by working in a hospital in the department of Human Resources.  Hospitals are heavily regulated and one of the most stringent agencies who monitor us is The Joint Commission. One of the standards they have for human resources is that it’s our responsibility to determine if the people we hire are competent enough to safely do their jobs. I won’t bore you with the details on how that’s done but in working on a project related to competency determination today, I thought about what competencies are required to be a family caregiver.  It’s not an easy job but for some reason insurance carriers and the government seems to believe that any family member should be able to be a caregiver.
Just before my father-in-law died last month, I was attempting to assist my mother-in-law in finding someone who could take care of him if he was discharged to hospice care.  We discovered that once a person is deemed not to be able to improve but instead just needs comfort care or maintenance care that Medicare and insurance companies no longer pay for help regardless of the health and well-being of the family member responsible for his care.  My mother-in-law is near 80 and has myasthenia gravis, a neurological condition that makes all her muscles very weak.  She cannot lift or move anything more than a few pounds in weight.  There was no way that she could provide care for her spouse; however, that factor was not considered by insurance and she was unable to get any type of financial assistance to bring someone in to care for him or to place him in a skilled care facility.  Why? Because insurance said he did not need skilled care; just palliative care.
I’ve found the same is true for someone who is totally disabled and cannot improve their health, like Lynn.  His MS has progressed to secondary progressive and he can do nothing physical for himself; not even scratch an itch. He is an author and writes manuscripts with the use of a verbal command program that writes what he dictates.  It’s slow going but it keeps him productive and fortunately, so far his memory has not been affected by the disease.  With Lynn needing total care and my needing to work full time to pay the bills, I looked for help that we could afford.  I now pay an individual to work six hours a day 2-3 days a week to assist him with typing, feed him, and make sure he has liquids to drink. I provide all the rest of his care.  Am I competent to truly care for him? What type of competencies do I need to keep him safe and healthy? If someone was to apply for my job, what would my job description as a care giver look like?
Caregiver Job Description
continue reading at: http://multiplesclerosis.net/living-with-ms/caregivers-perspective-competent-job/

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What Happens When It's My Turn?

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Having turned fifty-seven this week;
Hope of retirement in eight years seems bleak.
Thinking of losing my income somehow;
Is much too scary to think of just now.
To think of not having two jobs but just one
Is a dream a long time in my future to come.
For if I step down from my duties to care
Who would assume the role that I bear?
Who would be there to scratch his frequent itch?
Or to set up the peddler when his leg starts to twitch?
continue reading at: http://multiplesclerosis.net/living-with-ms/happens-turn/

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Life Lessons from Caregiving

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Occasionally I get an email from someone who is a new caregiver asking for advice on how to adjust to this new role they have acquired.  Here are some of the life lessons I’ve learned from caregiving.
I can’t be perfect.
Not that I ever was but I’ve always had the personal philosophy that if I was going to do anything, I wanted to do my best if not be the best.  I didn’t just want to do a good job; I wanted to do a great job.  I did not like failing and so to avoid that negative feeling, anything that I wasn’t naturally good at doing, I would tend not to do. I would engage in only those things where I could be a success. I took that approach to caregiving, too.  I started out wanting to be the perfect wife and caregiver while simultaneously being the exemplary employee in my job.  I was depressed and frustrated and heading down a slippery slope till I broke down one day and Lynn and I discussed what my new reality needed to be. My goal now is to do a good job at everything and exceed where I can, but to recognize I can’t keep up the pace needed to be excellent. That’s hard for me to accept but necessary for survival.
Learn to say, “No.” 
I am a people pleaser.  I usually said “yes” to any request for assistance and I volunteered to help out when someone had a need.  My new reality is that even as much as I want to be part of the drama team at church or sing in the choir, or even attend a support group, Lynn needs someone with him 24/7 and most of my friends and family members need to care for their own families after 5 p.m. or on weekends when those types of activities usually occur.  I frequently see requests to assist with one type of mission activity or another or even I hear that my daughter needs someone to keep her sick child; but I have to say, “No.”  Right now, Lynn’s health and safety have to take priority so I can’t allow myself to over-commit.  I have to set priorities and stick with them or I’ll collapse from exhaustion.
Ask for help. 
continue reading at: http://multiplesclerosis.net/living-with-ms/life-lessons-caregiving/

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I've Felt Worse

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One of Lynn’s regular responses when someone asks how he is doing is, “I’ve been worse.”  It conveys to the person asking that he’s not feeling great but that he’s grateful he’s not feeling worse.  It also allows him to avoid discussing how he really is and it shows a positive attitude, which is something that he tries to always maintain.  However, it also denies the fact that he actually doesn’t feel well at all.
Several months back I challenged him on that statement. “So, if you have felt worse, does that mean you feel good now? Are you not allowed to admit that you feel horrible because you have made such progress toward feeling better?” He thought about it for a minute and admitted that he just didn’t want to confess the he didn’t feel good yet.  He felt that he had been feeling bad for sooooo long that no one would want to hear that he felt bad and yes, he felt much better than he used to, so shouldn’t he feel grateful rather than complain?
I think his attitude is pretty common for those who have chronic health conditions. They get so tired of feeling lousy that they hope by ignoring how they feel; it will not be so bad–sort of like that saying, “fake it till you make it.” But does it really work to fake that you feel good when you feel like taking your next breath is too much work or if you had the choice to have your leg amputated versus dealing with the spasticity and muscle spasms every day, you would choose amputation if they could guarantee you wouldn’t have phantom pain?  I don’t think you can ignore the fact that you feel that bad.  You might keep it from others but you can’t keep it from yourself.  If you do, then you may stop trying to get better and just give up, seeping lower and lower into depression.
Lynn and I tend to try to identity a reason for why he feels bad each time that he does… “Must be a low pressure front coming it,” “It’s the Rebif,” or “It’s pollen.”  We both know that “it’s the MS” or the “hypothyroidism” or the “heavy metal detox,” but if we can attribute it to something more transient, then it might go away sooner and that’s comforting. Like everyone else, we try to fake ourselves out into believing this is not permanent.
continue reading this post at: http://multiplesclerosis.net/living-with-ms/ive-felt-worse/

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How Others See Me

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Whether it’s right or wrong, healthy or unhealthy, most of us tend to “take in” the view others have of us.  I think that’s especially true of caregivers.  Once you become a full-time, all consumed caregiver you tend to lose part of yourself through absorbing the emotions and needs of the person for whom you are caring.  I think in some ways that’s what also sets apart the “born” caregivers from those who just provide care. The healthy balance is in knowing how much to absorb so that you can instinctively know what the other person needs and being able to filter out the rest.

When you are very in-tune to the emotions of another, it’s very easy to take on those same emotions.  If that person is happy, you enjoy laughing along.  If they’re sad, you feel a gloom settle over you both while you try to find ways to cheer them up. When they’re angry, it feels like it’s directed at you, and in fact may be, but the underlying reason for the anger is often their disease process.  However, it’s very difficult not to “give as good as you get” when someone is spewing forth hateful or angry words at you. When those words are spoken, it’s difficult not to wonder if you’re to blame or are you doing a good enough job.  It’s also very difficult to come back and keep taking it.
I’m very fortunate that Lynn rarely directs anger at me.  He gets angry at his situation or the equipment he is using when it malfunctions but he’s very careful not to blame me. He’s very considerate of my emotional needs and very grateful for all that I do for him.  But he also has all his mental functions intact.  Not everyone who cares for someone with MS or other neurological conditions is that fortunate.  When MS dementia sets in, the person with MS might not have a clue as to who their caregiver is or why they have to do what is being demanded of them.  It’s heartbreaking to be in that situation when as a caregiver you are doing your best to keep them safe and healthy but they are fighting you each step of the way because they think you’re trying to harm them.  I can’t image anything much more frustrating.  In those situations you might begin to doubt your own sanity or if it’s the right time to say, “no you can’t have cake for breakfast,” or would it really be okay this time.
There are many challenges that come from being a caregiver that you deal with every day in the privacy of your own home. I know I often devise ways to handle a challenge that to others who might observe from the outside looking in might be seen as being weird or even unsafe but unless you walk in my shoes and have my exact same resources, skills, and time constraints; don’t judge what I do because at the time, I’m probably doing my very best.
It’s easy for people on the outside looking in to make judgments on what you should or should not do. They’ve read an article, heard a story, watched Dr. Phil, or taken a class and have become experts on what should or should not be done.  I know mothers are often criticized about how they handle a toddler who acts out in a store or disrupts a waiting room or whatever. They get “those stares” that cast judgment and they feel embarrassed and ashamed to be caught not being the perfect mother.  The same holds true with caregivers.  In public, Lynn does not want to be fed.  He prefers to try to feed himself so I always have available for him special utensils for that purpose and finger foods he can pick up and eat without too much difficulty.  However, it’s usually not the same food as everyone else and he usually makes a mess.  I can sometimes see the pity or embarrassment in the eyes of others which unfortunately makes us both want to avoid eating in public.
Continue reading at: http://multiplesclerosis.net/living-with-ms/others-see/

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So, How Are You….Really?

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When you run into someone when you’re out in public, what seems to be the first thing out of their mouth after saying your name?  For me, it’s, “How’s Lynn?” and then it’s, “and how are you doing?”  It’s never easy to know how to answer that question.

I believe that most people don’t really want to know details; they’re just asking to be polite and to communicate that your well-being is something that they care about.  Therefore, my typical response is, “we’re doing fine.” Then, there are those who know a little more about some of our challenges and want a little more information, so that group gets, “Doing well.  No new issues right now.”  That’s all they really want to know—is he worse or about the same? They know he’s probably not “better” because he has a chronic, long-term health condition that has totally disabled him so in their minds, “how good can it be, anyway?”
There are those who are interested in details—family members, close friends, and confidantes—those groups get more information, but it’s still filtered.  People in those groups want to know if there are any new problems and what is being done about them is there is.  They want him to get better and make progress.  They don’t like for him to feel bad or have to go through difficult times and they seem so disappointed if I tell them, again, that he feels “bad” or is exhausted and just has no energy.  So I just share the surface things and change the subject.
The fact is, Lynn is totally disabled.  That’s not likely to change. He feels lousy on some days and less lousy on others.  He’s tired every day but some days he’s just tired and other days he’s exhausted to the point that he couldn’t move his power-chair to get out of the way of a car speeding toward him. We attribute those good and bad days to a variety of factors but in reality, “who knows?”  It is what it is.
So then, how do I respond when someone asks me, “How are you? No, really, how are you?”  Usually I still just smile and say, “I’m doing okay; it’s hard but I manage.”  I don’t believe that they really want to know how my life really is.  It would sound too much like I’m whining because if I really told them like it is, it would go like this:
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A Short Trip Back Home

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For the most part, Lynn and I are home bodies.  He just doesn’t handle traveling very well so we rarely leave home.  His already ever-present exhaustion is made significantly greater when he travels and it usually takes a full day to recover afterwards; therefore, we rarely do any short trips since he spends the time at our destination recovering.  Because of this fact and the fact that their home is not wheelchair accessible, I have not made the five-hour trip “home” to my parent’s house since around 2008.

I grew up in one of those rural areas where everyone knew everyone else and more than half of the neighbors were related in some way.  My cousins and I used to all get together annually for a family reunion; however, since Lynn developed MS, we haven’t attended.  I’ve really missed seeing them all and figured I would never see them again due to our travel issues, but my parents and brothers have come up with a plan for us to get together in a few weeks.  I’m really looking forward to seeing all my relatives but planning a short trip is as challenging as planning for a long one so I also dread it in many ways; especially since Lynn will not have a recovery day before he has to attend the reunion events.
In planning for this trip, my first order of business was to find a hotel nearby that was wheelchair accessible. That’s not as easy as it sounds. Many pronounce themselves to be handicap accessible but when you start asking questions, all “accessible” actually means is that they have handrails to use in the bathroom.  That is totally useless for my purposes because he couldn’t reach them anyway and he can’t transfer himself to the toilet so they serve no purpose.  Instead, my “search” criterion was for a roll-in shower.  I figured if a room included a roll-in shower, then the room planner might have a clue as to what was needed for someone confined to a wheelchair.
The first place I booked had the shower but the room had two double beds in it and the picture of the rooms looked really crowed.  Too much furniture in a room makes it nearly impossible for him to turn his wheelchair around so I began to look for something else.  The one I booked yesterday has a single king-size bed, a roll-in shower, a small refrigerator and a microwave in the room, and wide doors.  Mentioning the 32” doorway is a plus since that’s an indication they know what they’re talking about. I’m still a bit concerned because there was no actual picture of a handicap accessible room so I still wonder how much space there might be for him to turn around in.  I guess, if necessary, I can have maintenance move out furniture if I need more room for the wheelchair.
To continue reading this blog, click here: http://multiplesclerosis.net/living-with-ms/short-trip-back-home/

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What’s a Ratchet?

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When I took on being a full time caregiver, I knew I was taking on full responsibility for skin care, elimination, nutrition, hygiene, assistance with activities of daily living and even physical therapy.  What I hadn’t counted on was taking on my husband’s role of maintenance mechanic for our home. Having a medical background, I’m comfortable with the caregiver duties; not so much with the mechanic ones.  In fact, they intimidate me to the point of panic when Lynn says something like he did last night, “Go get a ratchet.”

His electronic peddler (that he had been using almost non-stop for spasticity release for the past three years) recently bit the dust.  We had taped it up with duct tape, oiled all visible parts, and my solution, jiggled it unmercifully, with no success.  Resuscitation attempts of the old one was “called” and we had to pull out our backup peddler.  Unfortunately, when we turned on the backup, this terrible grinding noise could be heard with every rotation.  Since the grinding seemed to be coming from the motor, Lynn’s recommendation was to order a new one and return the noisy one when it came in.  So I did.  Well, the new one isn’t noisy but it has a hitch in its giddy-up.  Every rotation now is accompanied with a shimmy jump that can be felt in the base of Lynn’s foot and all the way up the leg. Upon watching the action for a period of time, he made the pronouncement, “I don’t think the arm is tight enough.  You need to tighten up the bolt. Go get the ratchet.”
Hearing the, “Go get…” was like a Pavlovian response for me.  My skin became clammy; I developed tunnel vision; and the muscles in my head and neck tightened.  It happened to be raining yesterday so my arthritic hands were already screaming with every use. “Wait a minute.  I can’t tighten anything today,” I responded. “My hands hurt, too, much.”
“It will be okay. The ratchet will do all the work.”
To myself, I’m mumbling, sure, that’s what you always say but outwardly, I’m saying, “okay, I’ll give it a try.”  So, off I go in search of a ratchet.
Lynn has not been in the garage in at least five years.  During that time, many of his friends, our kids, and I have gone into the garage to use his tools.  He remembers the tools being right where he last saw them. That’s not exactly true anymore so the first thing I have to do is search for and locate this item that I don’t know what is.  He describes it as a long silver tool with a thing like a bolt sticking out the side at the end of it.  I start looking under things, opening all the drawers in the tool box, moving things around and piling them into new heaps (that will again cause confusion in the future because they have again been moved), until finally, I find three silver things that match the description.  “Is this it?” I ask my mentor.
“Yes,” he responds, “but you also need the sockets.”
“Okay, what are those and why didn’t you mention that before?”
“Those are small silver round things that you put on the bolt and which inserts into the racket.  There is a metal strip out there that has what you need on it.”
He doesn’t answer my question on why he didn’t tell me this the first time and I proceed to look for sockets.  I find a metal strip with silver things that match his description.  At least half of the slots are empty so I look through drawers again finding similar items and again return to Lynn.
“Where’s all the sockets that belong on the strip?”
“Who knows?  I told you things have been moved around. This is all I can find. Okay.  What now?”
Lynn proceeds to tell me how to remove the protective cap covering the bolt on the arm of the peddler. Then we go through how to select the correct size.  I try to figure out how to attach the socket to the racket finally being successful after multiple attempts to push it into place. I put it on the bolt wrong, feeling totally inferior as a mechanic.  It doesn’t work so I try it the other way and it works!  After multiple, painful, tightening attempts, the arm of the peddler seems tighter and the squeak that was accompanying the giddy-up hop goes away. Triumph!
Finish reading this post at: http://multiplesclerosis.net/living-with-ms/whats-ratchet/

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Sometimes I Get Jealous

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Sometimes I am jealous of Lynn.  Isn’t that sick? How could any able-bodied individual who is healthy, independent, productive, able to work and function normally be jealous of someone who is totally dependent on someone else for EVERYTHING in his life other than his own thoughts.  I must be mentally ill – but there it is, sometimes I get jealous. Just how sick is that?  It’s certainly not something I’m proud of but I decided to share this secret, unattractive side of caregiving with you because I expect other caregivers have had that same emotion.

Let me be absolutely clear before I go any further….I do not envy him. I do not think he has the good life and would want to trade places with him for anything.  I know he hates being dependent on me.  I know it hurts him emotionally to see me tired or in pain or physically ill but still needing to do for him.  I know he had much rather be going to work every day, feeding himself, taking his own bath, and scratching his own itches.  I know he only asks of me what he cannot do for himself and no more.  My jealousy is not about his abilities or lack thereof; it’s about my own need to be cared for.  That’s why I get jealous. I want someone to take care of me for a change; no not just that, I want to be able to put myself first when I’m sick or tired rather than having to ignore how I feel and keep pushing forward.  Here’s the base truth—I want to be selfish for a change.
Like being a parent, when I became a full time caregiver, I committed to that role totally.  I ALWAYS put Lynn’s needs ahead of mine except when to do so might cause more harm than good. For example, if he needs to be moved and I haven’t had a chance to eat anything in hours and my blood sugar is crashing, then I may leave him where he is, even if he’s a little uncomfortable, till I can go grab a bite of something to keep me from passing out—not a whole meal, just a snack. However, if he’s really needy one day because he is feeling pretty rotten or achy, chances are I’ll put off eating, going to the bathroom, or completing home/work chores until I can get him at least half-way comfortable.  I sympathize with his inability to comfort himself and I show that concern and acknowledge that need by tending to him first.  He in turn tries not to ask for anything he absolutely does not need – though sometimes in my jealous state, I question if he REALLY needs to have a particular action done…again….and again.
Truthfully, the jealousy comes when I’m tired or sick or both. When I have had four ½ hours of sleep the night before and I’m on hour 14 since getting up with much still left to be done… when all I want to do is lie down and go to sleep, I become very jealous of the fact that I will make him comfortable and he will immediately fall asleep and nap while I head to the kitchen to prepare meals for the next day or to eat my own dinner or to put in a load of clothes or take a shower or whatever and it will be yet another 2-3 hours before I get to lie down.
I become jealous when I am in pain from my arthritis (which is significant at times). Both hands are painful; I have little strength in them any more with swollen knuckles, nodules on the bones, and joints that must not have any lubrication left.  I cannot take the usual medications that help reduce the effects of arthritis due to being allergic to shellfish and many of the other ingredients in those remedies so I take four Advil usually twice a day to help control it. However, when my hands hurt from the effects of air moving across them yet I still need to pull of his clothes, give him a shower, and then put clothes back on him; I just wish someone else could do it for me.
I sometimes fantasize that I’ll get injured and can’t do his care for a while and I’ll have an excuse to take care of myself.  But in the next thought, I remind myself that there would be pain and it would not be a vacation.  I guess what I need is respite care.  However, that’s easier said than done. Respite care is not paid by insurance so if I obtained it, the money would have to come from somewhere.  If I saved enough for respite, then I couldn’t afford to go away and if I didn’t go away, I would be home and he would need my help so that’s not much of a realistic option.
To finish reading this post, click here: http://multiplesclerosis.net/living-with-ms/sometimes-get-jealous/

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Moment by Moment

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I was reading a blog about advice caregivers give to other caregivers and as I read through the suggestions (all of which rang true,) one connected with me more than all the others—“live in the moment.”

“Live in the moment,” is a phase I’ve heard much of my life in the context of learning to appreciate life.  The comment parallels the phases, “stop and smell the roses,” and “this, too, shall pass.”  While I rarely “stop to smell the roses” (all the flowers in my yard are artificial, even the roses), I do try my best to “live in the moment” and keep in mind that “this, too, shall pass” but from my perspective, they take on a little different meaning.
When I’m asked what advice I would give to someone who suddenly is thrust into the role of caregiver, I always say, “Take life moment by moment and try not to have, too, many expectations.”  I guess that sounds pessimistic to some but I see it as being realistic.
I’ve find that when I plan my day, I still tend to plan it as if I can actually control what happens.  For example, today is Saturday.  It is the one day I get to actually get a full night’s sleep provided we don’t have anyone coming to the house to help us out. Today, I had no visitors coming so I got seven hours of sleep!!!! I feel wonderful; full of energy.  I planned that after I finished our morning routine, I could write my blog, do some flower arrangements for the porch and get some work done for my paying job.  Wrong….
I started to write this blog at 12:00 p.m. It is now 2:30 p.m. and when I got interrupted, I had written two paragraphs.  Lynn has an unexpected trip back to the bathroom.  That’s a big deal when someone is fully dependent on someone else. It takes time to get them undressed again, assist them with contracting their abdominal muscles by pushing on their stomach for them, doing the necessary clean up, back to bed, redress, then back up again and settled in for their next task.  That additional 1 ½ hours of unexpected activity will mean either not doing something for my job or not doing the flower arrangements.  Things change, moment by moment and usually it’s not something that can be foreseen; however, it’s something that must be handled because it’s necessary and “you” have to do it.
Continue reading at: http://multiplesclerosis.net/living-with-ms/moment-moment/

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The Challenges of Separation Anxiety

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I experienced separation anxiety as a child.  I didn’t like to leave home; rarely went to sleep-overs; and seriously considered my college choices based on how close they were to home so I “get” that feeling of longing to be close to someone you love and the slight edge of fear that comes when you are separated from them.  I learned more about the “other side” of separation anxiety when my children were little and I had to peel them off my body to leave them at day care so I could make it to work on time (which I rarely did because I had an aversion of losing skin during the peeling process). Now that my children are grown, I’ve learned to adapt to it again with my husband. It’s a little more difficult this time around.

When Lynn and I were first married, we were both self-sufficient, totally independent personalities. Both of us had managed alone as single parents for a while and both were used to doing our own problem solving so we didn’t “need” one another.  Sure we yelled the usual, “be careful,” comments as either was leaving the house but our thoughts quickly moved on to the next item on our agenda; there was no lingering anxiety over whether the other would return safely a few hours later. That all changed the day Lynn fell and was not able to get up on his own.  He had to lie in the blowing heat from the heat register waiting for me to return home from an hour and a half away after he had tried unsuccessfully to get up without calling me for an hour and a half himself. That three hour time frame shaped his psyche forever.  Where before he liked being alone and independent; after that day, he didn’t want me out of his sight or hearing.

After that day, if I needed something from the store, he tried to either convince me that we really didn’t need it or that it would be simpler to just order it by mail. I could see the fear in his eyes if I left the house and the, “be careful,” mantra took on new meaning for him.  He was afraid that if I left, I might never come back and if that happened, what would happen to him?  He was and is convinced that if I die or become unable to care for him that he will die, too. He knows that as much as our children or our siblings and parents might want to help us out, if I’m not around or able to provide his care, he will most likely have to go into an extended care facility and we do not have the resources for it to be a really nice one.  Therefore, he knows many of his personal needs and quirks (which are many) would go unsatisfied.  He knows that he would probably not get his special diet or his dietary supplements that are making such a difference in his well being.  He knows that he would not likely get the physical therapy adapted specifically to his needs.  He would more likely get a urinary track or kidney infection because the care facility would likely put in an indwelling urinary catheter.  He would not be able to use his peddler that keeps his legs and feet from hurting all the time.  He would not have access to his own personal computer to continue to write and feel productive.  He would become part of a group, exposed more often to viral and/or bacterial infections and probable skin breakdown.  He would likely not get showers but would instead get bed baths and his very existence would likely be compromised.  At the very minimum, his quality of life would decline significantly. Therefore, he panics when he thinks of losing me. Don’t get me wrong; he also loves me and would grieve my loss emotionally, but it’s all this other stuff that creates the panic.  He could survive the emotional loss but would not as likely be able to survive the physical changes.

Now, when I leave, we go through the twenty-questions of: Where are you going?  How long will you be gone?  Why is it necessary? Can’t someone else go instead? When will you be back? Have you checked the oil in the car? Is the car running okay? When will you be back?  Where is my phone? Is it charged? Can I reach it? When will you be back? …and on and on and on.

When the separation anxiety for became an issue, after I would peel him off my body emotionally and leave, the first thirty minutes would usually okay, but then I would get a text message…Did you make it okay?  When are you leaving?  Can you hurry up? Just checking to make sure you’re okay…..

To continue reading this post, click here: http://multiplesclerosis.net/living-with-ms/separation-anxiety/

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The Impact of Caregiving on the Caregiver

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s I was taking my morning dose of Advil (4 tablets rather than 2), I was curious about my future as a caregiver and what being a caregiver was doing to me personally.  So I thought I would look up to see if any research had been done on that topic. The Family Caregiver Alliance had a nice comprehensive summary of what research says on their website.  I caution you though, that if you are the receiver of care, this might make you feel guilty and if you are the caregiver, it might make you feel depressed. That is not my intent.  I think these facts are important to realize; however, so that appropriate decisions can be made for everyone’s future.

 Mental and Emotional Health Impact of Caregiving

  • Caregivers have higher levels of depression (40-70% have signs of clinical depression).
  • They often have coexisting anxiety disorders, substance abuse or dependence, or chronic health disease along with depression.
  • Caregivers have higher stress levels experiencing symptoms of frustration, anger, feeling drained, guilty or helpless.
  • They report feeling a loss of self identity, lower levels of self esteem, constant worry; feelings of uncertainty, less self-acceptance and feel less effective and in control of their own lives.
  • More than one-fifth (22%) are exhausted when they go to bed at night and feel they cannot handle all their caregiving responsibilities.
  • Caregivers who experience chronic stress may be at greater risk for cognitive decline including short-term memory, attention and verbal IQ.

Studies indicate that stressful caregiving situations may result in the caregiver participating more often in the use of alcohol or other substance abuse and caregivers often use prescription and psychotropic drugs more often than non-caregivers.  In addition, family caregivers are at greater risk for showing higher levels of hostility.  Over time as clinical depression increases and the person they are caring for shows greater impairment in mental and physical dependency, the caregiver is more likely to engage in harmful behavior toward their loved one if they themselves have become depress. Depressed caregivers also show a greater incident of suicide.

 Caregiving Impact on Physical Health

  • Eleven percent (11%) of caregivers say their own health has declined since taking on caregiving responsibilities.
  • Caregivers have a lower level of subjective well-being and physical health. In 2005, three-fifths (45%) of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared to one-third (24%) of non-caregivers.
  • Caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching), increased tendency to develop a serious illness, and have high levels of obesity and bodily pain.
  • Studies show that caregivers have a diminished immune response leading to frequent infection and increased risk of cancer (caregivers have a 23% higher level of stress hormones and 15% lower level of antibody response).  They also suffer from slower wound healing.
  • Ten percent report they are physically strained.
  • Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk for the development of cardiovascular syndromes such as high blood pressure and heart disease. They also are at greater risk for diabetes and higher levels of cholesterol.
  • Women who spend 9 or more hours per week caring for a disabled spouse increase their risk of health disease two-fold.

to continue reading this blog, go to http://multiplesclerosis.net/living-with-ms/impact-of-caregiving/

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Finding Time for Normal

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I usually write my blogs on Saturdays because it’s the only time I don’t immediately have another obligation once I’m freed up from routine caregiving.  Today is beautiful outside-the sun is shining, the air is warm, no clouds on the horizon.  I see a few bees buzzing around and there are daffodils peeking out of the stems that survived the late season snows we had this year. As I look around, I yearn to go outside and create hanging baskets of bright colored flowers and set out other flowers bordering my house but as I think of indulging myself in those activities, I look at the clock on my computer…it’s already 1:11 p.m. Lynn will be up from his nap soon and need to eat.  I have clothes washing that will soon need to go into the dryer.  I have “x” number of reports to write for work, this blog to get out today, and I need to put away several boxes of supplies that arrived this week before my grandson visits in the morning.  I also wonder if I’ll have time to get to the library before it closes at 2 and I have a DVD to drop off (that is already on day five of late rentals).  Oh well, maybe another day I’ll be able to get outside.

Unfortunately, that’s how must days go for me.  I find it almost impossible to participate in the non-essential but normal routines of life. If it were not for the kindness of one of our friends, our yard would likely only get mowed once a summer when it absolutely had to be mowed in order for us to find the driveway.  I don’t actually plant flowers anymore because live plants require watering, feeding, and other care.  I don’t have time for that so I sit out artificial ones.  Artificial plants may be tacky by some people’s standards, but for me, it makes the place look cheery so I don’t really care if it’s tacky.

Another normal I don’t have time for is cleaning the house.  I wipe down space based on where I am when I have a fairly clean damp cloth.  I don’t vacuum or dust and spring cleaning…forget about it! Fortunately, I have found someone who will clean my home for a price I can currently afford and she comes every other week.  However, what she doesn’t touch; doesn’t get cleaned.  I just don’t have time to deal with what is not essential so I clean to prevent food poisoning; not to make my home look good.

Click here to read more of this blog: http://multiplesclerosis.net/living-with-ms/finding-time-normal/

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Second-Hand MS

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Before Lynn was diagnosed with MS, my experience with the condition was from a distance.  I knew of a third cousin with it that family members talked about in sympathetic tones of doom.  I had a few encounters with colleagues who had MS and who shared some of their struggles with me when they asked for my assistance in obtaining a reasonable accommodation (I work in Human Resources) so they could perform their jobs successfully.  I remembered some information from my nursing training twenty-five years previously but it was mixed in there with the rest of the chapter on neurological conditions so I wasn’t sure if I was remembering symptoms of MS, Muscular Dystrophy,  Myasthenia Gravis, or something else. I knew enough to know that I needed to learn more.
Our first appointment with the neurologist was a little over-whelming.  We came home with a bag full of literature to pour through to decide which medication he might want to try, the option to participate in a study, and several pamphlets that basically were along the lines of, “so now you have MS…”  Lynn didn’t want to have anything to do with any of it.  He gave it to me; said, “tell me what you think,” and turned his back on the entire thing.  At that point, I believe he was too depressed to let anything in.  He wanted to be in denial and would not even let us say aloud that he had MS.  His philosophy was, “If you say you have it, you give it power over you and I’m not going to do that.” While I could understand where he was coming from, on the other hand, MY philosophy was, “knowledge is power,” so we immediately separated into our two corners to deal with the situation.
…So began my journey of having “second-hand” MS.
Continue reading at http://multiplesclerosis.net/living-with-ms/second-hand-ms/

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Hold My Hand

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Dear Lord,
I don’t know why you do the things that you do
or why you let happen the things that you choose.
I’ve often doubted your wisdom and resented your ways;
not willing to accept what I was facing that day.
Like when I was a young and my friends turned away,
I was sad and alone and tempted to stray
but you taught me the value if I would obey
and brought me a new friend I have to this day.
I went on through school and a nurse I became
my dreams of my childhood were just not the same
I landed a job that allowed me to grow
in ways that prepared me for what I must know.
The trials of a marriage destined not to succeed
taught me reliance on faith for my everyday needs.
Single parenting was hard and many failures I see
Looking back at my choices and need to be me.
But God was right there standing close by my side
keeping me going and being my guide.
A special needs child and another too free
some hard times, some good times, some just meant to be
Though hardships were many and challenges not few
to loving and caring adults they both grew.
My spouse I did meet through your influence as well
A personal ad I did answer, do tell.
We married but struggled in our attempt to unite
our children and habits and expectations weren’t right.
I prayed we’d find closeness and a true family become
But try as we might that “oneness” didn’t come.
Then much to our sadness MS found its way
into the dynamics of family each day
I asked many times “why us?” and I prayed
for a miracle or something to take it away.
But in your wisdom this hardship worked out to our good
We’re closer and happier than we thought that we could.
So thank you, Lord Jesus, though I don’t understand
I’ll trust you and turn to you, just keep holding my hand.
Amen

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Follow Me on WWW.Multiplesclerosis.net

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For those of you to like to follow  my blog, I recently began writing for Multiple Sclerosis.Net, an email newsletter that is published weekly.  My first article was just printed.  In case you’re interested in reading the email newsletter,  just go to http://www.multiplesclerosis.net
Adapting Celebrations to Meet Our Needs
Finally all the Christmas decorating is finished!  What usually takes me two, maybe three days, has taken me twice that long. But then, almost everything I do now takes twice as long as it did in the past – before my spouse was diagnosed with MS. (http://www.multiplesclerosis.net)

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Cheesecake Makes it All Worthwhile

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English: Orthodox Christmas decoration Српски ...
Nativity  (Photo credit: Wikipedia)

I love Christmas.  I’m sure I’m not alone when I say it’s my favorite time of year.  I love the excitement, the beauty, and especially the meaning….but it IS a lot of work.
The reason I did not write a blog last week is that I was busy decorating for Christmas.  You see, I must have about 2o tubs of Christmas decorations.  I have stuff for the inside and stuff for the outside and although it takes a long time and my poor arthritic joints are crying the blues, I enjoy every minute of decorating. However, now it’s a bit more challenging to get all that decorating done and it takes twice as long as it used to do.
Once upon a time, I used to get all my decorating done the day after Thanksgiving. I would start early in the morning and keep at it till it was all done. Now, I always have the first three hours of any day devoted to Lynn’s morning routine of hygiene, toileting, and exercise. Then he rests in bed for 30-60 minutes depending on how restless his legs become.  During that time I eat breakfast and start cooking whatever is in low supply for his diet.  Then I get him up, connect him to his peddler, work to get him comfortable, and head back to the kitchen to finish cooking. Shortly after this he’s ready to eat breakfast.  All and all I usually start being able to decorate about 2-3:00 p.m.
Though he really does try not to bother me too often, on average I get a “call” from him every 45 minutes to an hour.  When I answer the call, I’m usually involved with him from 15-20 minutes depending on what he can think to ask me to do.  (He stores up his requests so that he won’t bother me as often).
On advantage to decorating now is that once Lynn goes to his room after his morning exercise, he does not venture out again till the next day. Therefore, I can spread out whatever I’m using as much as I need to do.  I don’t have to worry about him running over debris with his wheelchair or moving things to where I can’t find them.  All decisions related to how or what I decorate are totally mine.  His participation is very limited.
While Lynn has never been one to go all out and decorate like I do, he has always enjoyed the season’s festivities as well.  We both were involved in choir at church and so we had rehearsals and get-togethers we enjoyed as we prepared for the Christmas cantata.  There were family and friend get-togethers where we socialized with those we may not have seen all year.  And Lynn loved to cook.  He loved to invite family and friends over and provided them a feast.
Now all that has changed.
Lynn still wants to have family and friends over for get-togethers but now I do all the cooking (and I’m not a gourmet cook like he was; nor do I especially like the challenge of cooking for a group).  If we have people in, I have to split my time between making sure all the food is prepared and everything is available and running smoothly and taking care of Lynn’s needs.  I get to do very little socializing. I stay near Lynn all the time; watching for signs of fatigue or getting overheated.  We often have to excuse ourselves so he can bet cathed. He doesn’t like to be fed in front of others so I get him finger foods to nibble on and later I feed him something when he goes back to his room. All too often he feels miserable when others are having fun and that becomes very depressing when it happens so often.
But there is one bright spot for him that he always looks forward to.  Lynn always “cheats” on his diet at holidays and gets a big slice of cheesecake.  He loves cheesecake and he looks forward to it with excitement every holiday.  Somehow that slice of cheesecake seems to make it all worth while.
Even with all the challenges and disappointments, Christmas is a special time of joy, love, and sharing.  It’s more difficult than it used to be, true; but it has never lost that special place in our hearts. We still recognize the meaning of Christmas as a time of newness and birth. Christ’s arrival brought hope and promise of a better tomorrow. It was a time of celebration and love. It’s still that for us.  It’s a time of joy, remembering that there are possibilities of a better tomorrow in the year ahead. There is the love of family and friends which is renewed when we gather together.  There is the promise that thought we struggle with Lynn’s condition each day, there will come a time when we join Jesus in heaven and Lynn will walk again without any fatigue or stiffness and with lots of energy and strength.   It’s no wonder I like Christmas.

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I Didn't Say That

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I’ve discovered that a lot of people who have never been caregivers just don’t get what it really means to be a caregiver and they make a lot of bad assumptions that sometimes cause us hurt.  I had an example of that this week.
On Friday, I received an email from my former sister-in-law.  She was “outraged” by something she believed I had endorsed and proceeded to accuse me of being thoughtless, uncaring, unappreciative, heartless, and a Christian who did not live what I believed.  She said some very hurtful things based on a rumor she had apparently heard from someone who was uninformed and absolutely wrong in what they shared.  Not only did she hurt me but she hurt my daughter who she was really trying to get to through me in the first place. It was an unprovoked attack and unfortunately, one that will certainly taint any future interactions I may have with her (though hopefully there will be no more).
She had heard that my daughter would not bring her child to visit his great-grandmother due to fear of MRSA (Methicillin Resistant Staph Aureus– a very difficult to treat infectious condition) in the rehab facility where she was staying.  Her assertion was that my daughter should bring her child for a visit regardless and since she was a stay-at-home mom, she certainly had the time to be able to visit. She conceded that she realized I had my hands full but she felt I should have insisted that my daughter visit instead of encouraging her to stay away.
I was stunned by her assumptions and accusations.  First off, I didn’t even know that my former mother-in-law was even in a rehab facility much less that she was asking to see Eli. Second, I couldn’t imagine that if Sarah (my daughter) knew about the request that she would refuse unless there was a very good reason. The truth of the matter was that she did know that her grandmother was in rehab and had in fact, already planned with her to take Eli there to visit when her husband was available to assist her with the toddler.  Eli is a special needs child.  In almost every way he’s as normal as any other 16-month old toddler; full of energy, into everything and wanting to put everything in his mouth still. However, he does not eat.  He refuses to drink almost anything and he eats only 2-3 tablespoons of food at any sitting. He does not take in enough food to survive on his own so he has a feeding tube.  Therefore, to take him anywhere means taking all the supplies for his tube feeding and replacement materials in case the tube comes out or gets dislodged.  On top of that, this tube that goes through his nose into his stomach, hangs out of his nose and goes down his back.  The tubing provides a direct passageway from whatever it touches outside his body to his stomach.  Therefore, letting this tube come in contact with MRSA is a very big deal. But the biggest insult was the assumption that since she stayed at home, it was no big deal to go for a visit.
That’s the part that people just do not understand.  Going out is a very big deal.  Though our challenges are different, my daughter and I both have the same issues when leaving home with our charges.  You have to pack supplies (for me its catheter supplies; for her it’s tube feeding), food (Lynn can’t eat out due to his special diet; Eli will only eat very specific things), and comfort items (clothing, water, medications, etc). Lynn fatigues very easily and his spasticity causes him a lot of discomfort if he can’t get on his peddlar that will rotate his legs and relieve the spasms.
I know people wonder why we don’t go anywhere but it’s so difficult to do so and it causes so much discomfort for us both that the enjoyment of a visit is not enough incentive to make up for the problems to address in getting there.  It’s not that we don’t care about other people or that we wouldn’t enjoy a visit but its high risk and often takes more time for recovery afterwards than the amount of time we were gone. So we don’t go.
Bottom line, I wish people would stop making assumptions about what they think is our reason for not participating or not doing what they think we should be doing.  Just like that saying goes, “don’t judge until you have walked a mile in that person’s shoes.”

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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.

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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.

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