Caregiver

Someone who provides care and assistance to someone else

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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One Minute He's Hot; the Next He's Cold

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The thermostat in my house is currently registering at 77o ferneiheit.  With all the activity I’ve been involved in today, I’m now sitting here melting at my computer. Meanwhile Lynn alternates between being hot and cold but mainly stays cold.

Before the days of MS, Lynn’s body temperature ran hot. It could be the middle of winter and he would be outside in shorts and a T-shirt cooking on the grill.  We used to joke that one day he would spontaneously combust into flames because he just radiated heat.   That changed shortly after his diagnosis.  He gradually became less tolerant of heat.  Instead of setting the temperature indoors to a chilly 70, he would be satisfied to allow me to set it at a more comfortable level where it was no longer necessary for me to bundle in a blanket and wear gloves to watch TV.  Then he went from being warm to the touch to being cold.
Lynn developed a urinary tract infection that was mistreated for a couple of months resulting in his becoming very ill.  His body was not able to fight off the infection and he became weaker and weaker.  As his health declined, he became cold. At times it was necessary for me to wrap him in blankets, put fleece lined footwear on him, cover his hands in gloves, and heat up sandbags to lie over his hands and against his body.  He was freezing all the time.
Eventually, he had to be admitted to the hospital and while there, he aspirated and developed pneumonia.  It wasn’t caught at first, because he had no fever.  He was very lethargic; sleeping all the time. His blood pressure was low as was his pulse, and his body temperature simply did not register.  For almost two days the staff just attributed the temperature difficulties to equipment.  Finally, one of the care partners got a rectal thermometer because she felt something just was not right.  Rectally, his body temperature should have been a degree higher than orally; however, his body temperature still did not register.   When they finally were able to get a reading, his body temperature was 90o rectally!  He was immediately put into the ICU and a heat blanket used for hours to gradually bring his body temperature back to normal.
To continue reading, click here: http://multiplesclerosis.net/living-with-ms/one-minute-hes-hot-next-hes-cold/

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Put Guilt Back in the Box

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There are a multitude of emotions that play into being a caregiver or being the one with the chronic disease that needs the care. Which emotion takes front stage on any given day is affected by how you feel, how the other person feels, how much sleep you got the night before and what else happened that day.  One of the emotions that I have to battle more often than most is guilt. I think I struggle with it the most because I can’t seem to be what I think I should be and I can’t always do what I think I should be able to do. In my own mind, I know that when I say I will do something, I absolutely know that I can do it—I am quite capable; I have the knowledge, the skills and the ability to do what I say I can do.  Then something happens to prevent me from getting to it or doing it as well as I had wanted to do, and the guilt sets in.

I am extremely fortunate that I have a job that can be done from almost anywhere as long as I have a phone, a computer, and access to the internet.  Since I have all three at home, my manager allows me to telework.  I come on site at least once a week usually to attend meetings or to provide training.  I often attend meetings through teleconferencing but sometimes I just need to see a person’s reaction to be able to pick up on how a conversation is really going. On the days I go in, I often set up back to back meetings so I waste no time when I’m there.  To go onsite, it takes a minimum of four hours to get ready to go.  Unfortunately, our morning routine does not always go as planned.  Not to gross anyone out but sometimes the bathroom process doesn’t go as well as we would hope and it puts me way behind schedule.  Other times, I get a text from whoever was supposed to come that day saying they woke up with a runny nose or cough.  We try not to expose Lynn to any infectious or viral conditions because it sets him back so far so I scramble to find a replacement and often, that’s impossible so I have to stay home.  I HATE WHEN THAT HAPPENS.  I feel so guilty when I have to reschedule appointments or even when I have to say that I’ll need to talk to them by phone because I know they would prefer to talk face to face.  Though I still manage (usually) to get the work done, it’s not how I wanted to do it or when I needed to do it so I feel guilty and very critical of myself.
Now, flip that coin.  When I have to cancel going into work because Lynn’s body refuses to do what we need it to do or we can’t get someone to stay with him so he doesn’t have to be alone (note:  he can stay alone for maybe an hour or even two at most but no longer than that because he can’t get food, drink, or empty the urinary drainage bag for himself), Lynn feels so guilty.  He knows that I am jeopardizing my reputation for his sake.  Knowing that if he could just do those things for himself, I would not be under the pressure I live under every day makes him very depressed at times.  I need to be able to share my frustrations with him but I hesitate to do so because I know that guilt will certainly rear its ugly head.    It doesn’t matter that he has no control over what happened and that he absolutely can’t do these necessary things for himself so it’s really not his “fault” but to his way of thinking, it’s entirely his fault because if not for him…..  He is also afraid that one day, I’ll be so overwhelmed with all the responsibility and so tired of the struggles, that I’ll just walk away; so on the one hand he feels guilty and on the other hand he feels afraid. Yuck.
Read more at: http://multiplesclerosis.net/blog/put-guilt-back-box/

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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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I Like Ours Better

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There’s always a lot of hype that surrounds holidays, and Valentine’s Day is certainly right there keeping pace with all the rest. It’s supposed to be a day to celebrate your love for one another in some special way with gifts, dinner out, and other more intimate ways of expression. I’ve never been overly romantic; though Lynn was.  He used to always send me flowers where I worked or made me some type of special decorative object.  He always did something special because he enjoyed showing his expressions of love in his own way.
Now that he is unable to get out on his own, he isn’t able to do those things anymore. He can’t make anything since his hands don’t work and he can’t order anything to surprise me since I manage the household funds and would have to type in the credit card information. He can’t take me to dinner because he tries to stick to his special diet and by night time he’s pretty wiped out anyway (plus this time of year we avoid crowds anyway due to cold and flu germs).…he can’t show other more intimate expressions of love independently—other than a kiss.  He can’t put his arms around me or hold me or cuddle with me unless I position him like a manikin and honestly, with my arthritis pain and muscle spasms, that’s just not something I want to do for a few minutes of physical closeness.
You would think that this loss of physical intimacy might have adversely affected our relationship, but I honestly think just the opposite is true. Before Lynn became so dependent on me, we both were VERY independent souls.  Both had previous marriages that did not succeed and both had learned to be both a mother and a father, a housekeeper and a maintenance worker, a CEO and a front-line worker.   Learning to share and include one another was not always our first instinct and that oversight often caused conflict. We may have had physical intimacy but we didn’t have as much emotional intimacy.
While it may sound strange to say this, Lynn’s loss of mobility has lead to our relationship actually becoming much closer than we ever were when we could go out and participate in things together.  Now we have to share everything.  If he has an itch, I have to scratch it. If he needs a bath, I have to give it. If he has a problem…he now tells me about it. There is a strong connection that bonds us like nothing we had before. No longer am I shut out of his life; we truly are one.
 
Read more of this blog at: http://multiplesclerosis.net/living-with-ms/like-better/

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Buying Health

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There’s a lot of talk these days about health care reform and making sure the uninsured have coverage.  I don’t want to debate the strengths and weaknesses of the law but I do want to comment about the struggles associated with having a chronic health condition and how much is not considered when adding up the cost.
Fortunately, most of Lynn’s prescription costs are covered.  If we didn’t have insurance, our cost would be over $5,000 per month for just his MS drug.  In addition to his MS medication, he takes meds for other conditions like high blood pressure, mitral value prolapse, neurogenic bladder, MS depression, hypothyroidism, and others.  Just the cost of meds alone would send us into bankruptcy or more likely, we just couldn’t afford for him to take anything if we didn’t have insurance coverage.  Total cost for his meds last year (insurance + copay) was $58,000!
Besides medication, his dietician has him on numerous dietary supplements to support neurological cell regeneration and to assist with energy and autoimmune responses. We spent $6,500 for those last year. That does not include the fact that most of what I buy for him now is organic or meats that have been grass fed.  Don’t know if you’ve checked out the price of organic food lately but it’s not cheap.  Grass fed meats and pastured poultry is also much more expensive than buying the store brand. We have discovered that his body does not eliminate harmful chemicals ingested or absorbed and that he’s been storing them up for years.  We are working now to get rid of all those toxins so the last thing I want to do is put more in there from fertilizers, hormones, or other chemicals used to buff up the animals or prolong storage and/or appearance.
Totaling our cost continues:  food and medications–covered; now for supplies.
Each month, I order medical supplies (self-catheters, in-dwelling catheters, gloves, lubricants, catheter insertion kits for travel, etc., skin care and barriers, lotions and ointments for various needs, and miscellaneous other supplies particular to his care.  I have shelves in an unused room full of such daily used supplies as well as other “in case of” supplies.
All of the above are the routine costs of daily living, but there are other more costly purchases which fortunately do not occur every day but when they do happen, they really take a toll on the purse strings.  For example, at various times we have purchased a cane, rollator, manual wheelchair, bedside commode, shower chair, and power wheelchair.   We were fortunate beyond words to have our church donate the cost of putting in a ramp so Lynn could get into and out of our house and a roll-in shower to make it easier to bath him.  Our house is a rancher so we have not had to decide between moving, putting in an elevator, or redoing a lower level to make accessibility available inside the house. Others, I know, have not been as fortunate.
To read the rest of this post, click here: http://multiplesclerosis.net/living-with-ms/buying-health/
 

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My Role as a Physical Therapist

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Personally, I have never been good at exercising.  I hate it.  I might feel much better if I stayed with it a while but I’m so out of shape that I feel awful doing it.  Not so, for Lynn.  He has always been good about doing some type of exercise almost every day. The major difference now is that I have to help him with it. Therefore, one of my many roles in caring for Lynn is to be his personal physical therapist.
For anyone, but especially people who have conditions that produce fatigue, keeping conditioned is essential to conserving energy.  If the muscles don’t work efficiently, it takes a lot more energy to do the simple tasks of everyday life.   Lack of stimulation to the muscle groups causes them to become de-conditioned which require more oxygen and other support from the body to make them work correctly.  When Lynn was in the hospital so much in 2010, he was told that for every day of inactivity (i.e., being confined to bed) he experienced, it would take approximately a week to regain what was lost due to deconditioning. He found that to be true to a large extent.  It has taken him years to build back up much of the strength he lost during those three hospitalizations and some of it has never returned to the same level.
There is not a whole lot you can do to prevent the progression of MS; however, if you keep fit you’re more likely to be able to maintain greater strength and endurance than if you are out of shape.  Lynn does not want to give up and let me do everything for him.  He wants some control over his condition so exercising is both a mental triumph as well as a physical one. Here’s some of what he does.
 
Read the complete blog here: http://multiplesclerosis.net/living-with-ms/my-role-as-physical-therapist/

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The Need to Feel Productive

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One of the struggles we have had to address with Lynn’s MS progressing so rapidly at one point was the loss of his feeling useful. Lynn was very strong, flexible, and talented all of his young adult life.  Then over the course of three years it seems he went from having the ability to build his own home (drafting the plans, laying the foundation for a full basement, toting, lifting, hammering, shifting, etc.) to not being able to have the strength to push a button on a keypad. He was the supervisor of a fabrication shop that designed and built displays that were the size of small houses.  He was a very talented carpenter but he could do just about anything related to construction and was even good at auto repair.
Unfortunately, just as his MS was progressing to the point that his work was being affected, his company closed the fabrication shop.  He was still in the state of mind that he was not going to acknowledge he had MS and needed help so he did not apply for disability; therefore, he lost access to that financial assistance.  He was convinced that if he didn’t own “it (MS)” then “it” had no control over him.  Though I tried to explain that he could and should fight to keep all of his functions intact and working well, he did not want to accept that disability insurance and other resources were there to help in that fight; not to prevent him from doing what he could on his own….but my husband is very stubborn.  Enough said on that.
While Lynn struggled to continue to “work,” being a carpenter doing physical labor is not safe when you lose your balance and fall often.  Also if hands and fingers don’t grip well, then use of power tools is dangerous.  He realized after a couple of close calls, he needed a new line of work.  His son suggested he start writing because he seemed to have a talent for it and enjoyed using his imagination.  He started with short stories but soon had an idea for a novel. He found that he loved to write and it became his new job.  He had his first novel published (Rising Tide) in 2009 just before his physical spiral downhill resulting in months of hospitalization.
After his third hospital discharge in six months, he was very weak; however, he continued to want to write. He NEEDED to write because he NEEDED to feel productive.  As a man, Lynn had to feel needed and productive to feel he mattered.  Actually, don’t all of us feel that way to some extent? No one wants to feel like a burden.  People have a need to contribute and when they can’t, depression sets in and health starts to deteriorate.  Therefore, I realized that part of my role as Lynn’s caregiver would be to help him work and be productive.  I needed to find a way that he could write daily that would still allow me to work.  It’s often a challenge and can be very frustrating for both of us.
continue reading on: http://multiplesclerosis.net/living-with-ms/the-need-to-feel-productive/

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Is There Really Anything to Being On An MS Diet? We Think so

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Early in discovering how to cope with MS symptoms, the nurse who works in Lynn’s neurologist’s office suggested that he might want to see a registered dietician.  Lynn was feeling pretty rough all the time.  He had no energy and more than that, he just felt bad.  She shared that her husband had been seeing someone who had really made a difference in how he was now feeling.  Though her husband did not have MS, she strongly suggested we give it a try; so we did! Two years later, I must say, it’s the best decision we ever made.  In fact, Lynn was just saying today that if he had to give up all his doctors/therapist but one, the one he would keep is his nutritionist!
The first step we took when seeing the nutritionist was to keep track of EVERYTHING he ate for a week. This allowed her to see what his eating habits were –what might be good and what might need to change.  The first thing she told us that had to change immediately was that he needed to stop eating dairy and become gluten free.  Both dairy products and gluten create more inflammation in the body.  Her goal was to reduce or eliminate as many foods as possible that would trigger an inflammatory response.  The next goal was to increase ingredients into the diet that would support the neurological system.  She had attended a conference where the research of Terry Wahl was presented.  Dr. Wahl had secondary progressive multiple sclerosis and went from being wheelchair bound and unable to do much of anything to using only a cane, riding horses and returning full time to work.  Hearing that; we were hooked on trying it.
Click here to read more: http://multiplesclerosis.net/living-with-ms/is-there-really-anything-to-being-on-an-ms-diet/

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Arsenic, Mercury, and Lead – What do They Have to Do with MS?

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If it’s one thing I have learned in caring for my spouse, it’s that in order to keep him healthy and functioning at his optimum level, I have to take a holistic approach to his care.  Taking MS drugs to prevent exacerbations helps prevent significant loss of function; however, if his body is not in the best shape possible to fight attacks from viruses or bacteria or if he’s injured or allows his body to become de-conditioned, those issues are just as significant to his well-being as the medication he takes. Therefore, Lynn’s wellness regime includes a diet that targets mitochondrion function (repair of nerve cells); he exercises every day focusing on different muscle groups; and he rests when he gets tired.  At his last neurologist visit, his functioning was better than the visit before and as it had been the visit before that.  In fact, the neurologist stated, “You’re surprisingly better and it’s not due to what I’m doing for you.  Keep up the good work.”  It seems that he’s doing all the right stuff so why is it that he continues to feel so bad?
Lynn has been taking Rebif for almost two years now.  If you’ve taken Rebif or know anyone who has, it has the ability to make you feel like you have the flu; however usually that gets much better as your body adjusts to it.  That hasn’t happened for Lynn.  In addition, as a side-effect of Rebif, his thyroid stimulating hormone levels became high indicating that his thyroid was not working properly.  Hypothyroidism makes you feel cold, extremely fatigued, and generally miserable. So hypothyroidism was blamed for why he felt bad; but then the thyroid levels began to get back to near normal but his fatigue and general malaise seemed worse. Was this just another MS issue he would have to live with? Maybe not….
The best healthcare provider he has had by far to date is not his neurologist but his dietician. She’s amazing. We were having one of our regular consultations with her and describing how bad he felt and she quickly became suspicious that something else might be going on. She asked his primary care doctor to do a urine test for heavy metals.  She requested a six hour provoked test which required him to take some pills that stimulated the release of heavy metals that might be stored in his cells into his bloodstream and later excreted into his urine.  This test would show potentially if he had stored heavy metals in his system that might be affecting his health.  We were shocked at the results!
To continue reading, click here: http://multiplesclerosis.net/living-with-ms/arsenic-mercury-and-lead-what-do-they-have-to-do-with-ms/

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Living the Loss

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I attended a memorial service recently at my church.  It was the first time I had attended a church “service” there in three years.  The last time I was there, I was rehearsing for our Christmas drama and had one of the lead roles.  We were in the final weeks before the production and I had to drop out because Lynn was admitted to the hospital.  He was in ICU for a month and then readmitted two more times during the next six months.  Once he entered the hospital, his strength and functionality were significantly compromised due to inactivity and the complications of his condition so initially we could not return to church due to his health.  About a year later, he was strong enough to return but we discovered his power chair was too big to fit the elevator so he couldn’t go unless he used a manual wheelchair.  He isn’t strong enough to sit upright that long without the support of his power chair so we are currently waiting for renovations underway at church that will include a new elevator and handicap bathroom so we can come back.  Church members even lovingly call it “Lynn’s elevator.”

Prior to his MS progressing to this stage, Lynn sang in the choir, played hand bells, played drums for the praise band, provided some carpenter assistance in addition to attending services and Sunday school every week. I sang in the choir, played hand bells, lead a drama team, worked with a support group, and helped in the nursery while also attending services and Sunday school every week.  We were both very involved and much of our social interaction and support came from people at church.  Not being able to attend church left a big hole in our lives.  Many still send cards and they have supported us in so many ways, both financially and in service; that our lives continue to be touched and blessed by their generosity and compassion.  However, the type of fellowship we used to have is missing in our lives.

continued at:  http://multiplesclerosis.net/living-with-ms/living-the-loss/

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I'm the Primary Healthcare Provider

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Lynn has never been good at sharing information. He’s one of those men who can go to the doctor about a problem, find out he has a new medical condition, start a new treatment program, and when he comes home will say, “The doctor says I’m fine,” or say nothing at all. He did that for years before he was diagnosed with MS. Used to drive me nuts! I have a nursing background and when he came back from the doctor, I wanted to know everything—his blood pressure, what lab work was done, what was the differential diagnosis, what is the treatment plan, what options was he given before he made a choice, etc. Needless to say, I never got that level of detail from him because not only did he not ask those questions but if he did, he didn’t “hear” the answers and could not, therefore, provide any details.
One day after such an experience, I blew up and demanded that I be allowed to accompany him to his next visit.  Not only was I going, but I was going to make an appointment for him with a neurologist and he was going whether he liked it nor not!  I knew he had MS. I also knew he was not telling the doctor what he needed to share so that the doctor would consider that possibility. THAT was the moment that I truly assumed the beginning of my caregiver role.  I decided his medical care was coming under my supervision and that was that!
To read more go to:  http://multiplesclerosis.net/living-with-ms/im-the-primary-healthcare-provider/

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We Love To See You But….

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Lynn loves to socialize.  He’s much more outgoing than I am and often wants to invite people over; especially family members.  However, what I hear when he says so and so is coming over is this:  I’ve invited people over who may or may not have been exposed to a cold, flu, norovirus, or any other germs that could make me extremely ill and bring on an exacerbation or deterioration in my condition that could have long term effects.  Plus, I will likely spend a lot of energy talking and entertaining which means that what little energy I have will be totally used up and it will take me 2-3 days to recover so be prepared to provide even more care for me than you normally would.  In the mean while, I need you to fix a little something for them to eat like maybe a roast, baked potatoes, and some vegetables, while caring for me and trying to work and I would really like the house to look presentable though not necessarily festive.  “Really?” I say.
Don’t get me wrong, I also like to see family and friends and I really enjoy our time together but now that Lynn has an autoimmune disease that makes him susceptible to other illnesses, I see socializing in a whole new light.  Here’s what I would like to say to our guests (and actually sometimes do).
Read more at: http://multiplesclerosis.net/living-with-ms/we-love-to-see-you-but/

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Is That Your Final Answer?

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Once you become a full-time caregiver to your spouse, the relationship takes on many new dimensions.  While in the traditional marriage roles, the husband takes care of the wife and makes many of the final decisions regarding big issues, if the one being cared for is the husband, and the one doing the caring is the wife, those roles often reverse.  That reversal has happened to me and my spouse, Lynn.  Though I try to maintain our husband/wife roles in our marriage, I have to admit that now that I do almost everything for him and our home, it’s really difficult not to just make all the decisions without including him.
Continue to read the rest of this post at
http://multiplesclerosis.net/living-with-ms/is-that-your-final-answer/

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Planning, Time, and Flexibility: Essential Ingredients for the Holidays

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Christmas is a wonderful time of year; full of fun, excitement, and family gatherings.  For weeks beforehand, I spend time decorating, planning, anticipating the good times and envisioning the perfect holiday.  Like so many dreams, reality is rarely the picture perfect vision that I have in my head.  That is particularly true now that MS is part of our lives.
Lynn and I have three big family get-togethers at Christmas—my parents and siblings come the week before Christmas, our kids come Christmas Eve, and his family comes Christmas day.  Each is a wonderful time of creating memories and eating way too much food.  Even though these times are lots of fun, they are also very challenging.
Holiday celebrations are always held at our house since Lynn’s wheelchair cannot enter anyone else’s house in the family. Even though we often order pizza or one of the other family members will do the cooking, there is still a lot of preparation required to host a gathering. Everything takes more planning, more time, and great flexibility if you’re hosting the party at your house.  There’s the need to buy and prepare some, if not all, of the food, clean the house, and decorate (or make everything look festive).  When everyone gets there, you help make your guests comfortable, assist those who need to heat up items or put out food to do so,  make sure everyone has what they need to eat the feast (the fun part), clean up afterwards and put everything back into its original place.  Even if you and your family members are healthy, it’s tiring to host a party at your own house.  If someone in your family is not healthy, then it’s exhausting.
Read more at: http://multiplesclerosis.net/living-with-ms/planning-time-and-flexibility-essential-ingredients-for-the-holidays/

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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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All He Can Do Is Yell

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I’ve never been comfortable with strong expressions of anger. I’m the sort of person that prefers to compromise and resolve things peacefully so one of the more difficult challenges I have faced is how to handle Lynn’s frustrations expressed through anger.
Today as I was working at my desk, I heard over the baby monitor I use to make sure that I hear him if he needs anything, the increasing volume of Lynn’s voice as he was trying to get his voice recognition software to work properly. As I sat there, I could hear him first repeat the same command three times, each time a little differently.  Then he started adding in a few expletives and some not very flattering descriptions of the software program. Finally, the volume and expletives became so intense, I could no longer listen to it for fear that he was about to take his headphones off and through them across the room.
Read more at:
http://multiplesclerosis.net/living-with-ms/all-he-can-do-is-yell/

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Thus the Week Before Christmas

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Thus the week before Christmas and all through the house
Not a creature was stirring not even my spouse
A small Christmas tree had been placed on a stand
So he could “see” Christmas from his power wheelchair
The last of our children this past year had been wed
So most of my parenting worries I’d shed
While Lynn takes a nap, I put on many hats
I cook and I clean and on my keyboard I tap
When out of the quiet, I hear Lynn start to chatter
I listen intently wondering what’s the matter?
“Hey Sweetie,” he calls, “can you come get this trash?”
Now what is he doing? I muse as I dash.
The room as I enter looks peaceful and glows
With the lights from the tree and the wreath’s bright red bow
When what to my wandering gaze should appear
But his hand inching forward and heading straight to the gear
With a fear of disaster, I step over a split drink
Knowing in a moment he’d cross the room in a blink
More rapid than careful toward the joystick I aim
As he questioned my purpose and asked me my name.
Waking up a bit more, he asked, “What’s that you’re fixin?”
I give him my answer and head back to the kitchen.
In less than ten minutes once again he does call,
A deep sigh I do make and turn back toward the hall.
As I care for his needs and my hands I do dry,
I think of our blessings and tears of joy I do cry
I admit that at times my thoughts are quite blue
But I know in my heart that our faith is our glue
When I fear we won’t make it, I see I have proof
That our Lord is providing with His Word as the root.
His promises have power; His love does abound
His voice is a whisper, it makes not a sound.
Through Christmas He gave us the hope of new life
In His wisdom He gave me to Lynn as his wife
With God’s grace and Lynn’s love, there is nothing I lack
Through my service to both, a small portion I give back.
As I settle back into my chores for the night,
I pray for endurance, understanding and insight.
With a smile I keep going, there’s more to get done
But Christmas is here and we’ve been saved by the Son.
Merry Christmas!

English: Nativity scenes in Sanok
(Photo credit: Wikipedia)

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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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