Something New to Deal With

Every time Lynn starts acting differently for several days in a row, I start to wonder if it means there’s some new problem we have to face. MS can affect so many different body parts and functions that I just never know if a new problem is MS or something else.

For instance, Lynn has been sleeping a lot. He talked to his dietitian who thought he needed more protein in his diet; so, we added two protein shakes a day. He loves them and he is putting on a little more weight (he lost a lot dieting and not tracking how much he was losing) which is probably a good thing, but he still sleeps much more than he used to sleep. Now, I know MS causes fatigue and I know that our sleeping habits are poor because he wakes so often to empty his bladder but is this just the natural order of MS; lots of fatigue leading to the need for more sleep? Should he sleep this much if he’s tired or does sleeping a lot cause him to feel tired? Could be either. Should I be concerned or just let it go as part of the normal course of MS?

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Lack of Sleep. The Root of All Evil?

There are a lot of responsibilities and consequences in being a caregiver that I don’t like; things I would prefer not to do or which are difficult to manage, but the biggest challenge I have is lack of sleep. I think that if I had time to sleep more, my life would be a lot different.

Typically, I get five hours of sleep a night. If I were to have an opportunity to sleep through the night without interference, I would probably naturally wake up after nine hours. Nine hours is more like the “sleeping in on Saturday morning” days I remember back before children and back before Lynn became disabled. When I was going into work in the days before Lynn became immobile, I usually got eight hours and certainly at least seven of sleep a night unless someone was sick or we had been up for some special occasion. I remember those days fondly. I felt good. I had energy. I felt rested and refreshed when I awoke each morning ready to take on the day.

I miss those days.

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I Can’t Just Get Sick

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….
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Can You Come Here a Minute?

“Can you come here a minute?” I hear that every 30-60 minutes all day long and you know what?  It’s never a minute. When I enter his room to find out what he needs, I’m typically gone for 15-30 minutes.
Being the chief cook, laundress, banker, shopper, mechanic, fixer-upper, and caregiver; as well as spouse, Mom, grandma, and employee, my days are filled to overflowing. The only time I sit down is to eat and when I do, I’m usually composing a shopping list, taking care of bills, or completing assignments for work OR I’m feeding Lynn as I take a few bites as well. Most of my days are 19 straight hours of go, go, go; so in order to manage my life I have to be relatively organized.
“Organized?” you say as you look around my house. Well, my world might not look organized to you but trust me, it is. I have a hybrid concept of “everything in its place.” Its “place” is somewhere in a particular room, not a specific drawer, (well, sometimes a specific drawer if I use it fairly often) and is usually found somewhere to the “left as you enter the room.” For example, all medical equipment is in the spare bedroom, as is, the urinary catheter supplies. The equipment is located wherever you can get it to fit. The monthly catheter supplies are all on a shelf in that room and the daily supplies are in a plastic shelving unit in the bedroom. One is out of the way and the other is within arm’s reach of where I need it most. Supplies are stored according to purpose, frequency of use and size. I have cheap plastic storage bins stacked around that can be moved to where I need them and which allow me to have “activities” grouped together. Care supplies are organized; nothing else in the room is.
Clothes, for example, are not a priority for me. I want them clean, comfortable, and durable. I usually wear scrubs and they usually look well worn. I throw them in the hamper or washing machine, wait till I’m pulling out Lynn’s last pair of shorts to wear, and then and only then, do I do laundry. When the clothes are clean and dry, I hang them in the utility room next to the dryer for convenience or dump them into a laundry basket where they will probably stay until I need to use them again. My style of being organized – frequently used clothing right where I can walk by and grab them as I need them.
I wish I could be as organized with my schedule….but I can’t.
The key to my survival is flexibility and the ability to break tasks into smaller components quickly so that I can multitask. I keep in mind what is coming up next at all times. If I need to go to the back room to assist Lynn in answering the call of nature, I grab supplies or clean laundry to take with me. I ask Lynn to always tell me everything he needs when I first enter a room so I can plan my “process” for that particular visit. For example, if he needs me to make tea, cath him, adjust his position, and give him nose spray, I would put the water on to heat, fix the tea while it’s cooking, cath him, then adjust him so the process of cathing him would not disrupt the positioning needed, finish the tea then give him nose spray after he drank some hot tea. In my mind, I figure out how long something will take, what can be done in the meantime and what will be the impact on any one request by the sum and influence of all other requests. Through that analysis, I come up with a “routine.” Once I repeat that routine a few hundred times, it’s an automatic response. My goal=save time and energy.
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Planning for the Future with Our Children

Sometimes I forget the impact our life has on the rest of our family. Today, that impact is more evident as I wait for our three children and their spouses to come over to “talk about the future.”   I have been having just such a conversation with my brothers and parents but hadn’t really thought much about needing to have that conversation with my own children.  However, they have requested an opportunity to discuss the “what ifs” that can occur either as a result of my disability or my death.
As a result of secondary progressive MS, Lynn can no longer provide any self-care.  He relies on me for everything from feeding to assistance with going to the bathroom.  It’s a lot of work but we have a routine that works for us pretty well. However, what if I suddenly could not provide that care? What would happen to Lynn?  And what if the “what if” was not my death but my disability and not only would total care be needed for Lynn but also for me?  The obvious answer to that is that our children would have to figure out what to do with us.  Therefore, I understand and appreciate their desire to have this conversation with us today.
All three of our children are in their late twenties, early thirties. Two of them have just been married two years or less and the other one has been married longer but has a young child with special needs.  All are in those early years of learning to make it on their own and struggling to do so in today’s economy.  I also know that each of them would do anything for us.  They are very good about helping out and they want the very best for us, but realistically, if something happened to me so that I could no longer care for Lynn, there would certainly be an impact on them as well as me.
With any illness or injury there are mounting bills to pay.  If we were both dead and had outstanding debt that was not paid by life insurance, the bills would go to our heirs. That doesn’t seem fair but if I’m not mistaken, that’s how it is. Therefore, to protect my family, I have bought supplemental life insurance that should be enough between what my company provides and the additional I carry, to pay my last expenses and provide the ability to care for Lynn.  I can keep this insurance as long as I’m employed but I’m also 57 years old now so I may only have that option for another 10 years, if that long.  Hopefully, I’ll be able to afford to carry that as independent coverage afterwards though; so financially, I think they will be okay.
Providing Care
Money is one thing but who is going to be responsible for taking us in?  None of them have houses that would allow Lynn to move in along with all his equipment and supplies.  Therefore, they would either have to move into our house or move Lynn into an assistive living arrangement (or more likely a long term care facility).  I know that none of them want to do that but sometimes there is no choice in the matter.  I have some Long Term Care for me to help pay for a place for me to go but Lynn was in the process of being diagnosed with MS when that option became available with my company so he was turned down for coverage.  Would they be able to afford a long term care option or would someone have to quit their job to stay home to care for him? And, if that happened, could they afford for one of them not to work?
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Would Hydrotherapy Be an Option?

We had the great fortune this year to rent a beach house for our summer vacation that included a handicap accessible pool. The pool was large enough for our entire family to be in it (seven of us) but small enough that by afternoon the water temperature was around bath-water range. While some people might consider that a disadvantage, for Lynn it was just what he needed. Cold water tends to make his spasticity worse. Plus, Lynn is like a cold-blooded animal—he takes on the temperature of his surroundings; therefore, naturally occurring warm water was perfect for him.
Each day, we took Lynn to the pool where he hung out with us for at least an hour. I would put his arms across a buggy-board or water noodle and use that as a floatation device. The float would be in front and I would hold on from behind. While I held him, he used the buoyancy of the water to help him exercise not only his legs but also his arms and torso. It was a complete body work-out which did not result in serious fatigue. It was fun and therapy at the same time. While he exercised, he was able to be part of the family activities and enjoy the time with his two-year old grandson (who would have grown gills if we had stayed there any longer, I’m sure.)
Now that we are home again, Lynn realizes even more the advantages of hydrotherapy. When he saw his chiropractor this week, she commented on how much more flexibility he had than usual. She attributed that to the passive resistance of exercising in the water. Helping him exercise in the water was also easier for me. Though I had to hold onto him and even hold him up at times, the water served as a support system for the weight of his body keeping me from being as fatigued and reducing the stress impact on my own muscles. With that realization, he has begun to explore the possibility of buying an exercise pool.
The prospect of buying and installing a pool has me filled with mixed emotions, however.
The pros

  • Helping Lynn to exercise in a pool would be easier on me that the muscle stress currently occurring as I help hold, lift and otherwise move his limbs. He has very little ability to move either of his legs and can only move independently one of his arms so the effort required by me is greater than the efforts he can make alone.
  • An indoor pool in one of our spare rooms would be much handier than traveling 45-60 minutes to use a handicap accessible, heated pool in a nearby city. It would also take a huge chunk of time out of my day. Not only would I have to be away from work for the period of time he was exercising but all the time required to go to and from the exercise location and time to get him dressed and undressed.
  • Once it was bought and paid for, we would not have monthly membership fees.
  • The exercise would certainly improve his health and well-being and most likely, my own. For me, it would also likely help my arthritis pain and muscle flexibility so it would help us both physically.

The cons

  • Exercising in a pool at home while less time than traveling to one, would add at least an hour to my schedule and maybe more when it already takes three hours to get him settled before I go to work each day now.
  • The cost of installation, house modifications, exercise and safety equipment, and a lift device to get him into and out of the pool without assistance would cost approximately $15,000-$20,000. Not bad for an indoor pool but a lot more money than what we have lying around.
  • I’m sure there would be some kind of maintenance requirements that would add work to my already full day.
  • What if we do all this, and he gets worse or I get to where I can’t put him into the pool? Then we would have spent a ton of money for something we cannot use.

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So, How Are You….Really?

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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How FMLA Supports Caregiving

My paid job, that supports Lynn and me, is as a Human Resources Director of Employee Relations.  As part of that role, I am responsible for keeping up with employment law.  One of the laws often misunderstood by employees is the Family Medical Leave Act (FMLA).  While from the employer perspective this law is a thorn in their sides, from an employee perspective this law can provide you with the ability to care for your loved one without being punished for taking time off.

When many people hear about FMLA it is in relation to having time off when a new child arrives in the family either to recover from childbirth or to adjust to being a parent.  However, it’s more than just a law for new parents. Where it can especially be useful is for those people who need to miss time from work intermittently to care for a parent, spouse, child, or themselves due to a serious health condition.  Multiple Sclerosis is included as one of the conditions that is considered a serious health condition.
The provisions of FMLA say that you cannot face disciplinary action (including termination of employment) if you need to miss time from work to provide “care or support” for your immediate family member with MS…at least for a while.  It does have its limits. If you work full time you can have up to 480 hours off, without pay, each 360 days.  The 480 hours does not have to be taken all at once. It can be taken in as small as 15 minute increments if your employer counts its work time in that small of an increment which is the standard for most jobs (meaning you’re paid for each 15 minute period you work).  You can also take the time off with pay if your company has a paid vacation or personal leave policy.  In other words, if they allow you to take time off using paid leave to take your car to the shop for repairs; they have to allow you time off to take care of your spouse using that same leave.
You can use FMLA for any reason that meets the definition of care or support.  The obvious ones are to take your spouse to medical appointments, bathing and dressing them, helping with therapy, etc. But you can also use it to clean your parent’s house if they physically cannot, run their errands if they cannot drive, provide emotional support, and take care of their banking, etc. if they cannot do it themselves. The only thing to keep in mind is that you only have 480 hours each 12 month period.  Once you use it up, it’s gone till the year starts over again.  It’s also one of those situations where if you don’t use it, you lose it.  You can’t carry it over to the next year so that you can be off for an even longer period.
There are, of course, some rules you have to follow.  First, you must prove that you qualify for this law’s protection.  You must have been with your employer for 12 months though the 12-months does not have to be continuous.  Second, you must have worked at least 1,250 hours in the 12-months just prior to when you need to take the time off.  1,250 hours is about 31 weeks or almost 8 months if you miss no time and are working 40 hours a week.  The other point is that if you don’t work 40 hours a week, you are not entitled to as much time off.  If you want to know how much time you’re allowed, here’s the calculation.
Number of hours you work per week /40 (divided by).  That gives you a percent. (Example 30/40=.75) You take that percent and multiply it by 480 to find out how many hours you can have off.  (Example 480 x .75 = 360 hours)
Once you’re qualified then you have to provide medical documentation that you or your spouse, parent, or child has a serious health condition. Usually your employer has a form for you to take to your healthcare provider for him/her to complete.  Your healthcare provider and you should talk about how often you will need to be available to support your family member. I recommend estimating on the high side to be safe but also be realistic.  For example, you might need an hour each morning to get your loved one ready for the day.  That would be five hours per week but do you also on a fairly regular basis need to take several hours off for medical appointments or to run errands?  If you can’t do these things outside of work time and have to do them during working hours, include that time.  Just remember, when it’s used up, it’s gone AND you’re likely using your vacation time up to earn pay for this time.  Many employees assume because they have to be given the time off, their employer has to pay them extra pay above vacation time to provide this care.  That is not true. The law only protects your job and access to your benefits.  It does not provide for pay.
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The Impact of Caregiving on the Caregiver

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.

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My Role as a Physical Therapist

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

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.
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We Love To See You But….

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).
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I'll Miss You, Patrick

It was with great sadness this week that I learned of Patrick Leer’s death.  He passed away at home in the presence of his daughter, Megan, after battling unsuccessfully lung cancer with metastasis to the brain. Throughout his journey, he remained a fighter, keeping a positive outlook and determined not to let the disease win, but win it did on November 11.
When I first decided to write my blog, it was actually with the expectation that no one would likely read it but family even though I hoped that maybe a few other caregivers of family members with MS might stumble across it and we could connect through sharing our experiences. Patrick was one of the first to make that connection with me.  He had been caring for his wife, Patti, for over twenty years after she woke up one Thanksgiving morning unable to walk.  Their’s was a sudden entry into the world of MS and his wife progressed in her condition until for her safety, she had to live in an assisted living facility.  She developed MS dementia and may not have been fully aware even of her husband’s condition and eventual passing.  I remember Patrick sharing with me early on that caregivers often die before the one they have cared for does.  I also remember when he first wrote about having cancer his commenting that he had become a statistic; a caregiver with a serious condition that might take him before his loved one.
Reading about Patrick’s struggles and the impact it had on his ability to care for Patti brought home to me once again my fear of the same.  I often worry that I’ll have a heart attack or stroke and not be able to care for Lynn any longer.  Cancer is not as prevalent in our family but heart disease is and I’m sure I’m high risk for it. I rarely get sufficient sleep; I eat to stay awake so I’m gaining weight again; and I get no exercise so even the slightest exertion now makes me short of breath.  All are high risk factors for heart disease.  I keep thinking that I need to get on my treadmill each day for 30 minutes or I need to cut back on eating so many snacks or I need more sleep but I’m honestly at a loss on how to do any of those things.
I keep thinking I’ll get to bed earlier but I seem to get there later all the time. I often am so sleepy by 4 pm, that I fall asleep at my desk.  Some days I actually lie in the floor for a few minutes to take a nap or even lay on the bed and take one for an hour.  Those precious extra minutes keep me going till I can really crawl into bed around 2 a.m. each night.   I try hard not to nap though by snacking on things that will give me bursts of energy but which also are high in calories.  They help me keep going but my clothes are sure getting tighter. Then there’s the issue of exercise. The only time I could change into clothes, be able to exercise for 30 minutes, and change back out again without being interrupted is around 1 a.m and that’s too late to do something that would just wake me up. These things just sound like excuses to not take care of myself but in reality, they are choices I’ve made to take care of Lynn and our needs instead of me.
My children are worried about what will happen if I can no longer care for Lynn.  I understand their concern because in reality none of them could quit work and care for him; much less two of us.  They would certainly want to do so but they have to work and don’t have extra money to hire a caregiver so care could be provided at home.  Therefore, all our possessions would need to be sold so that we could go into assisted living.  Lynn is convinced he would die if I died first because he would not want to go on.  A large part of that is because we’re close and he would grieve my loss but the other part is he knows in assisted living he would not get the level of care that I give him and he would likely die from complications due to that lack of attention before many years.
It’s really a shame that there is no assistance for caregivers that can come into the home and support them so that in the end two don’t need to be cared for instead of just one.  Just another short-sighted aspect of our medical care.
Nuff said on this depressing topic but in closing I do want to say that I truly admired Patrick.  He was a dedicated husband and father for many, many years when men with less integrity would have rode off into the sunset.  I’ll miss you Patrick …. but not nearly as much as Patti will even though she won’t know why.

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When Is This Going to go Away?

I realized something this week. Somewhere in my subconscious, I seem to be waiting for all “this” to go away…to wake up one day and “everything” be back to normal.  How odd is that?
Lynn was diagnosed with MS in 2006.  We were married in 1997.  I knew well before his diagnosis that he had MS even though he was repeatedly told he didn’t; that his symptoms were something else.  Lynn didn’t want to have MS so he accepted that explanation; however, I’m a realist, and in my heart, I knew.
When the official call came and one of his worst fears was realized, I just received confirmation of what I “knew.”  I immediately started researching what I needed to know so I could manage his care. Initially, he was more involved in putting up roadblocks to learning about his condition than in really being involved.  I, however, have always faced my challenges through trying to learn more.  I look to find answers in the wisdom or knowledge of others through books, articles, webinars, etc.  I try to absorb all I can with the hope that the more I know, the easier it will be to cope.  In many ways that works for me because as the challenges occur, I at least have a starting point on how to approach it.
That being the case, then why am I waiting for all this to go away? I realized that I keep clinging to the hope that one day a miracle will happen and he will no longer feel so tired or so incredibly bad all the time. I read about other people with MS and they go out, have fun, work, participate in family events, do advocacy work, participate in bike rides and walk-a-thons, so on and so forth.  They seem to feel well and have energy though they get around using a wheelchair, cane, or walker.  They say they have bad days but overall they seem to feel pretty good.
Not Lynn.  He has maybe one day a week he feels pretty good. He’s pretty good on Monday, not too bad on Tuesdays usually. By Wednesday the first half of the day is okay but by afternoon he’s heading downhill.  Thursday is worse, Friday is pretty bad, Saturday and Sunday just “suck.” He feels so bad today, I’m surprised he can even function.
Why does he feel so bad?  We have lots of excuses.  His thyroid hormones are way off.  He’s slightly anemic.  His Rebif shots seem to accumulate in acting as a toxin to his system as the week goes by. The combination seems to make his quality of life pretty low most of the time.  It’s hard to watch him be miserable day after day after day; to watch him hope for a good day and need to accept that it’s not going to be one…again.
For me personally; if he’s having a bad day, he needs more attention.  He becomes impatient; then I get annoyed and then feel guilty for being annoyed but still get that way anyway. He can’t help with any movements so I have more muscle fatigue and spasms.  He needs to drink more fluid to flush out his system which means I have to cath him more (I cathed him 21 times yesterday in that 24-hour period. Needless to say, I was interrupted in whatever I was doing about every 30-45 minutes all day long).  So even though he’s the one who feels bad, we are both significantly affected.
He tries not to burden me with how he feels.  He tries not to ask me to do too much but when he’s like this, he really cannot even find the strength to lift his good hand to flip a switch on his peddler to turn it on; to scratch an itch behind his ear because he can’t lift his arm that high; to change the TV channel on the remote because he doesn’t have the strength to push the button, etc.  If he can’t do these small things, forget feeding himself, getting dressed, shifting positions in his seat or in the bed…
When he started Rebif, he was told it should take about six months to adjust to it.  He started it in April 2012.  We’re still waiting on the adjustment.  While he’s better than he was initially, this drug really kicks his butt.  Even as bad as he feels though, he’s afraid to stop it.  He has not had an exacerbation since 2010.  Is that the medication?  If so was Copaxone doing just as good as Rebif?  That didn’t seem to be the case because he progressively got a lot worse while just taking Copaxone.  If Rebif has been helping him to not lose further function is it worth feeling awful most of the time to keep it going?  Maybe so if an exacerbation might take away his ability to breath on his own, or be able to see, or remember, or speak.  There are a lot of really bad “loses” that can happen with MS so maybe putting up with extreme fatigue and weakness is not such a bad thing.
But I keep hoping that each day will be the day he suddenly adjusts to the medication, either the medicine for his thyroid or his anemia, or the Rebif suddenly works and he no longer feels absolutely awful.  I keep waiting for that day; expecting our lives to no longer be held up by how he feels and that we can again go back out into the world and be part of it.  Is it possible that could happen or is it just wishful thinking?

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Life's Precious Balance

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

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Second Generation Caregiver

It would seem that as of this week, my daughter has officially become a caregiver thus establishing a second generation of caregivers in our family. In reality, she has been a caregiver for many months now, but with the hospitalization of her son, my grandson, it now seems official.
Eli will be one year old on Memorial Day. He is full of energy never wanting to stop exploring his world.  He notices everything and remembers what he sees.  He’s becoming independent crawling wherever he wants to go with determination.  He pulls up and walks around things holding on so it’s just a matter of time before he takes off running across the floor.  He has a smile that will light up the room.  He LOVES people.  He has never met a stranger (yeah, that means we will have to watch him closely) and he makes whomever he sees feel as if they are the most special person around.  He’s adorable.  He also weights only 15 pounds (he weighed eight at birth) and is the size of a 5-6 month old.  He stopped growing around five months.  While most children by age one are eating finger foods and sucking down 7-8 ounces of milk, we’re lucky if we can get 3-4 ounces in him at a sitting or 1-2 teaspoons of level 1 baby food.  He just won’t eat and what he does eat, he burns off.
Until last week he was classified as “failure to thrive” with stunted growth.  He grew a little in height but did not put on any weight and was then reclassified as mildly malnourished. With malnutrition, if it progresses in severity, it can result in organ impairment or collapse and brain damage–all serious stuff.  So he’s now in the hospital with a feeding tube trying to boost his nutritional status.  If he doesn’t drink at least 3.5 ounces at a feeding the rest is added by feeding tube.  At night from 9 p.m until 7 the next morning he gets a continuous flow of formula (about 2.5 ounces per hour).  The process seems to be working.  He has put on 2 ounces since he was admitted on Thursday; however, he still does not take the food in himself so that tube is going home with him.
Since Eli was born, he has had difficulty with his feeding.  When very young his cried a lot and could not be calmed very easily.  Then he realized he could refuse to eat.  Now he takes in just enough to no longer feel hunger (or so it seems) and then he clamps those little lips like a vise–so something is wrong but what, we do not know. Therefore, Sarah, his mom, has officially become a caregiver.
All moms (and dads), of course, are caregivers–without them children would have a difficult time living very long; however, when a child develops special needs, that caregiving challenge doubles or triples.  Like me, Sarah rarely gets adequate sleep. Eli does not sleep well and needs assistance to fall asleep (we now know that is probably due to acid reflux causing him discomfort).  She breast feeds so every night around 4 a.m, she has to pump to make sure he has enough to eat since breast milk is his only nutrition.  Since he’s so active, he needs constant interaction and observation even with the help of baby safety devices (it’s amazing how he gets around those things). She has to fix him special formula to supplement her milk.  Feeding him takes 1-2 hours to get 3 or 4 ounces in him. Then once he has finished with milk, she has to try the baby food.  Once that is done, it’s time to get the next bottle ready, so on and so forth.
Eli will likely be in the hospital for 1-2 weeks while they see if he continues to gain weight and while they try to determine why he won’t eat in the first place.  Once he comes home, Sarah will be managing his feeding tube.  If he pulls it out (which he has done every day he has had it) it will need to be reinserted.  That takes two people.  Since I have had more experience inserting feeding tubes in my former nursing career, I offered to do the insertions for her (which she gladly accepted). It’s going to be very tough on us both because it’s not fun for him or us trying to get that tube through his little nostril, down his throat and into his stomach and not his lungs. Being nurses, we both know if it comes out while he’s feeding, he will likely get aspiration pneumonia which could be critical.  There is also the trauma associated with the people you trust holding you down and forcing a tube down your throat.  That’s traumatic for us all actually.
As a second generation caregiver, Sarah knows how her life will be centered on her charge.  She will eat and rest only when her patient does not need her.  Her first priority will be her patient; her child; and ensuring that he gets the care he needs as safely and expertly as possible.  All this she will do while at the same time probably neglecting her own health.  She found out the Monday before his admission that she has osteoporosis.  She has already broken three ribs just by bending over things. If she falls, she could break something else that will interfere more with her life.  They currently have no idea why she has developed osteoporosis at 28 years of age so it’s important for her not to ignore this.
That’s where I come in.  I’ll be her backup caregiver for Eli as she is now my backup caregiver, (along with Lynn’s son, Eric) for Lynn.  We will be the other’s support system and resource.  While I never wanted my child to have to become her child’s caregiver, I know he’s in good hands.  I also know that God will give her the help she needs to make it through this.  She has a wonderful, supportive husband and other family members she can also call on for support so though it won’t be easy, she’ll make it though and hopefully this will be a short ordeal without long-term consequences. 
I hope so.  Having one full-time caregiver in this family is quite enough….

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Caregiver or Mom?

Happy Mother's Day
Happy Mother's Day (Photo credit: Wikipedia)

Having just celebrated a great Mother’s Day with my three children and their spouse’s, I couldn’t help but think that although my kids are all now grown, my mothering days are not over. I’m not referring to my status of “once a Mom, always a Mom,” which is certainly true but I’m talking about how being a caregiver is much the same as being a mother.
As a Mom, I did everything I could to keep my kids safe, happy, and well.  As a caregiver, I do the same.  Whenever I’m in the presence of my “child” (Lynn in this case) I watch for signs of danger.  Is he about to run over something with his wheelchair that might topple him over?  Has he allowed his food to sit out too long without being eaten so that I need to throw it out?   I even automatically throw my arm out in front of him when I have to stop quickly!  (He always asks me what I think that will do to protect him since he is bigger than I am but what can I say, it’s an automatic reflex.) I always reach out to protect him from whatever dangers I feel might be lurking around. 
I also protect him from “bullies,” others causing him harm in whatever fashion,  by overseeing his health care, going to bat for him in defending his rights, making sure all his “stuff” is secure and cared for.  I am his “mamma bear” protector in the same way that I was to my children.  When I feel a doctor or other healthcare worker is not paying attention to his needs or missing something that I think is important, I step in. If I think someone is trying to take advantage because of his condition, I’m ready to go to battle.  I am his protector….Just like I did for my kids….
When I was raising my kids, I liked to always see them happy. I do the same for Lynn (and have the same challenges and defeats as I did for my children.)  I try to make sure he has what he wants; that he has entertainment and fun in his life; that he feels comfortable and secure. I try to keep his fears at bay and lighten his load so that he doesn’t worry or become depressed.  I try to keep him “happy.”  Hum, okay, I admit, that’s not always true but it wasn’t always true for taking care of my kids either. There are days that I strike out with my sharp tongue that can be cut like a knife.  I don’t always protect his feelings and I often fight back when I think I’m being taken advantage of but overall, I’m very sensitive to his emotional needs.   I try to help pick up his spirits if sad. I comfort and encourage him when he’s down and discouraged.  I bolster his ego and am his cheerleader.  I’m the proud Mama clapping and shouting for joy when he gets good news about his book promotions or gets a good book review.  I glow with pride when I hear him sing knowing that God gave him that voice to praise him (and praise him, he does).  All these emotions I have for him and give to him; I had and gave to my children as their mother.
Another goal I have is that I strive to keep him well.  Now as a caregiver, I seem to spend most, if not all of my time, in this category.  What I feed him, how I care for his physical needs, where I step in to ensure he has a balanced life; all these actions are done with the goal of keeping him well.  I make sure his food provides the best nutrient balance to fight MS.  I assist with his physical therapy to keep his muscles, respirations, and circulatory system in the best shape possible.  I see that his hygiene is kept up and watch for skin breakdown or discoloration that could indicate a problem.  I try to make sure he rests when he shows signs of being tired and I attempt to keep his life a balance of stress and joy. All this is done for his well-being.  All of this I did for my children and their well-being also.
So being a caregiver is essentially the same job description I had as a mother, EXCEPT as a Mom, I knew I was “growing up” my child to go out on their own.  I was giving them the best start they could have in life and laying a foundation for them to enter their adult life with health, knowledge, abilities, and emotional strength so that they, in turn, could raise their own families and be successful in their own right. 
Not so as a caregiver. 
What I do each day as a caregiver is not to prepare my child for a future to go out on their own but instead to continue in this life at my side and under my care for as long as they live or as long as I am physically and mentally able to do so.  He will not “leave the nest.” If he leaves its for a worse situation; not a better one (except personally, I have a strong belief that heaven is an awesome place and much better than earth could ever be; so in reality, it would be a better place for him; just not the dying part). For us, right now, there is not an end in sight, for which I am fortunate because as a caregiver to someone with an incurable condition, an end means THE END and is not a happy goal to achieve.
So as I reflect on Mother’s Day, I realize, I have my three children, my three children-in-law, my grandchild, and my spouse-child.  I have a house of children and in my opinion there is no better (or harder) job in life than being a Mom. 
Thank you, God for blessing me with my children.

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Warning! I have a Cold!

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

Warning! I have a Cold! Read More »

Whom Do I Choose?

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

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Quiet Time

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

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Going Out Isn't Easy

For most people, deciding to go somewhere is simply a matter of making the decision to go and then going.  For people who are mobilized through the power of a wheelchair, that process is a little more complex.
Lynn and I have not been to church since he was hospitalized almost two years ago.  He is now stronger and he is starting to adapt a bit better to the Rebif shots so we are considering trying to make a trip to church.  However, for us, that takes a lot of planning and foresight.
1.  What will he wear?  Lynn currently dresses for comfort and convenience.  Comfort related to the movement of limbs that need to be positioned, careful selection of where seams occur (since sitting on one for long periods when you cannot shift yourself is very uncomfortable), and something that is not binding, scratchy or constricting.  Usually he wears a long sleeve T-shirt and compression shorts with knee-high toe socks.  Not the most fashionable outfit but very comfortable and functional.  The other consideration is the ease for intermittent catheterization or if he’s using an indwelling foley, location of tubing and bag. Since he wears his same outfit to doctor’s appointments as he wears at home, he has not had on a pair of dress paints since PH (pre-hospitalization).  Does he have a pair that fits and could be comfortable for at least three hours?  Would they easily accommodate catheter needs?  That is yet to be determined.
2.  Bladder needs.  If we are making a trip to the store or doctor’s office, I take catheter supplies and cath him discreetly in the van or public restroom (if the location has a unisex and private restroom available.)  If we go to church, that’s an issue. He can’t leave in the middle of a service to be cathed; that would be disruptive.  However, he hates wearing an indwelling catheter in public with a tube leading to a bag of urine.  It’s embarrassing for him and it grosses some people out to see it–plus it makes him appear sick.  He isn’t sick; he’s mobility challenged, so to speak, but otherwise not ill. He doesn’t want those sympathetic, pity-type looks.  He wants to be viewed as whole and functional.  He doesn’t want to be written off as not being able to contribute or considered a subject of pity.  The urine bag represents that for him so it’s a struggle to make the decision to go somewhere like church with an indwelling catheter in place… though practically speaking, it’s the best option.
3.  Accessibility.  Can we get into the building and once inside navigate to where we need to go?  Before going anywhere, I usually like to do a dry run to look to see where the handicap parking is located, do they have ramps, elevators or stairs, etc. You would be surprised at the locations that you cannot access.  For example, we went to a lawyer’s office that had the required slope to the sidewalk so he could get to the front door; however, the slope was at the end of a sidewalk.  The sidewalk ran in from of parked cars.  On one side were cars and bumpers that extended over the sidewalk; on the other side was loose rocks used in landscaping and a significant dip off the sidewalk into the rock.  As he attempted to negotiate the sidewalk and move around the cars extending over the sidewalk into his path, his wheelchair wheels went over the edge and his chair very nearly toppled over into the rock.  I had to go inside and get the lawyer to help me lift him and his chair back onto the sidewalk.  Then we proceeded to the front door which was a good three inches above the sidewalk.  His chair can’t make it inside so we met in our van.  You would think a lawyer’s office would be better equipped. However, we are often surprised at who is not equipped.
Case in point–when we went to the Social Security Disability hearing in downtown Richmond.  I was amazed that there was no disabled parking available except down a step hill.  There was no curb slopping directly in front of the building.  I had to unload him and his wheelchair (that was before we got the wheelchair van and was using a manual chair) into mid-day traffic!  The entrance doors were not automatic and neither were the bathroom doors in the SS office!  Again, you would think a place that caters to the disabled would be better equipped!
Now back to my plan to go to church.  Our church is an old building.  It has an elevator but it’s small.  To get to the sanctuary, you enter the wheelchair into the elevator through a side door, then it goes up one floor, but the exit is at a 90 degree angle to the entrance door.  It’s nearly impossible to maneuver a manual wheelchair with a large man in it into the elevator and out the door one floor up.  There’s no way to get his powerchair in there with him in it due to the leg supports and foot pedals extending too far out.  So if we go to church, we will have to use a transport wheelchair.  The transport wheelchair is not designed to adjust in the ways he needs to remain comfortable sitting for an extended time.  I’ve considered putting him in the manual chair and trying to send the powerchair up without him in it but even with all limb supports tucked in close to the chair, I’m not sure we could maneuver the chair out of the elevator. If he’s uncomfortable, he will not be able to focus on the sermon or enjoy the fellowship so we have to take that into consideration.
4.  Finally, germs.  He’s very susceptible to infection.  He has an autoimmune condition, after all, so his immune system doesn’t function properly.  If he gets a cold, or heaven forbid, the flu or a GI virus, it could put him in the hospital and all he has gained since his last hospitalization could be lost again.  Therefore, once the cold weather sits in and people start spreading those nasty germs again due to being enclosed in crowded places, we will have to avoid public areas. I’ve jokingly told him I would put a plastic suit on him so he could shake hands and hug people but that might not be the most comfortable solution either.
So, we are not decided about going to church tomorrow.  If we can find clothes today, figure out the catheter question and get the backup plan in place for a wheelchair access, we might get there.  It would be nice to hear the choir and fellowship with the congregation.  We miss seeing them and being a part of worship but we are fortunate that if we can’t work out the process, we have the sermons online to fall back on.  Keep your fingers crossed that we will make it in!

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911-Do you do catheters?

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

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Oh, no. Is that a skin tear?

For most of us, if we get a cut or scrape or even a deeper laceration, we start to heal immediately and in a few days or weeks, it’s much improved.  Skin has miraculous healing powers.  Immediately after a cut, the body clots the bleeding, sends white cells and special chemicals to the site to fight off infection and within hours new cells start replacing those that were lost.  It’s awesome how God created such an amazing process for regeneration within our own bodies that takes place day after day.
When everything in the body is working properly, skin breakdown is not big deal, but that’s not always the case with an MS patient.   For one thing, MS is an auto-immune condition meaning the body already has it out for itself. Therefore, it’s NOT working properly much of the time.  Then, if there are mobility issues, the circulation to areas that do not move as well is often impaired and that slows down wound healing, too.  On top of that, if you’re taking an interferon like Rebif, then you could suffer from a decrease in the production of replacement cells.  And on top of that if you’re on steroids, your wound healing is REALLY impaired.  So getting a skin tear is a big deal with a wheelchair-bound basically immobile individual.
That being the case, when I give Lynn a bath, I really try to check out his skin and keep a watch on any cuts or scrapes that might be present.  He gets a lot of skinned elbows because he doesn’t pull in his arms as he should when rounding a corner going into a room(and no, he won’t wear elbow pads, I’ve tried).  Usually those heal pretty well because he moves his arms a bit more than his legs.
My greatest worry though are open wounds on his buttocks.  He has two almost pin-head size openings on his buttock near his coccyx.  Not a good place to have one. He can’t sleep in a bed right now because his legs are so uncomfortable so he sits in his wheelchair probably 22-23 hours a day–that’s a lot of time sitting on one part of the body; plus he doesn’t move his core very much.  He can’t really reposition himself in his chair other than to tilt his chair backward so he can slide backward.  Therefore, to get a wound on his coccyx area is a big deal. It’s a risk all the time for more shearing with movement and the pressure makes circulation to the area less. 
He has had buttock wounds before and I’ve tried various types of skin barriers and patches to treat them. Often the patches, even though designed for wounds, tend to tear the skin in other places when they are removed due to the adhesive. I’ve had small areas the size of pin-heads enlarge in a week to wounds the size of a quarter due to removal of bandages or dressings. It’s very discouraging and something to watch very carefully.
I know from when I was working as a nurse that patients who do not manage skin wounds well can die just from the horrible wounds and infections that develop over time.  I also know that at times the layers of tissue under what appears to be a scab are often continuing to deteriorate.  Wound care is very complex.  If the person you’re caring for gets a wound that keeps getting bigger rather than smaller and isn’t in time, showing the nice pink edges of healing, or if the wound starts to smell or drain a lot, see a doctor or wound specialist pronto.  Skin wounds are nothing to ignore.  Take them seriously and don’t wait, too, long to have someone who knows how to treat them properly  take a look.  If you don’t, the results can be tragic.

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I Don't Know What I Don't Know

Do you remember when the person you care for was first diagnosed with MS?  You might not have been around them at the time, but I remember it very well.  Those were very confusing days. I was almost sure Lynn had MS.  He didn’t want to talk about it or give the disease any power over him so he refused to acknowledge he “had” it.  He would not read about it, he would not look anything up, he didn’t want to talk about it.  As I’ve mentioned before, he feels that if you give what you have a name, then it tries to take over your life.  If you refuse to allow it to “have” you, then you still have some control.  To me, that was burying his head in the sand. I’m just the opposite.  I think the more you know, the better prepared you can be; so, I started looking up as much as I could “in secret” so I could know what to expect.
I was expecting for Lynn’s first neurological appointment after being diagnosed to be an extensive information session. I figured we would be told what to expect, treatment options, ways to improve his chances of staying healthy, …all kinds of things.  But that didn’t happen.  The doctor came in and took a medical history.  Then he did an examination.  Then he said something about relapsing remitting MS, handed us several booklets on various medications, gave us a handout on a MS study he thought might be a good option for Lynn, and asked if we had any questions???????
Questions?  I had about a million but Lynn had none.  I told myself, “this is his disease and his life.  Let him handle it like he feels he needs to.”  So I didn’t ask any questions but instead went home and read the pamphlets and started checking out information on the National MS Society website. I got an overall understanding of what MS was and some of the treatments, but it was really overwhelming.  There were so many different types and so many different symptoms.  I didn’t know what I needed to know.  Where should I start and what was essential and what was good to know or what might not ever be needed?  That’s when it would have really been nice to know someone who had MS who could have put it all in perspective but although almost everyone we talked to “knew” someone with MS, we didn’t know anyone and we didn’t want to call a stranger to talk.  I was fortunate that shortly after Lynn’s diagnosis, two people I worked with told me their mothers had MS.  That at least gave me someone to question about what was happening.
But you know what I think would have REALLY helped?  It would have really helped if our doctor had decided to treat the person who had MS instead of the symptoms the person had.  I don’t mean to imply that our doctor didn’t do a good job of treating Lynn; he did.  He’s very knowledgeable, he will answer any questions we have, he’s well-respected by his colleagues for his expertise, but unless I asked specifically for some type of referral or information, it wasn’t provided.
I’ve heard about places that have MS Centers.  I think that would be wonderful.  I think that when someone gets diagnosed with MS, they should have a complete physical workup to determine all the potential organs and functions that might be affected.  They need a counselor to discuss their fears, concerns, grief, anger, whatever they’re feeling… and so does their family, both separately and together.  They need to be started on an exercise plan specific to whatever areas of weakness may be present and their caregivers taught how to assist correctly.  There should be a dietician to talk about healthy diets FOR MS PATIENTS; not cardiac healthy eating but what foods are being found to support neuron function.  An appointment with a social worker to talk about planning ahead for applying for Medicare or Medicaid and what resources are in the area to help people with MS.  A pharmacist to talk about the abundance of prescriptions that might help or hinder the symptoms of MS specific to person.  Then wouldn’t it be awesome to have someone to pull it all together and talk about what to expect, handy hints for everyday living, how to handle (fill in the blank)? 
Why can’t a well-rounded approach be used to treat someone with a chronic condition that affects every aspect of their lives and potentially every organ of their body?  When will the medical progression get smart and realize, we don’t know what we don’t know so TELL US! Is that too much to ask?

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The Secret Life of a Caregiver

 I follow the writings of another caregiver, Patrick, ( who has been caring for his wife who has MS for 22 years.  Patrick recently discovered he had cancer and one of the comments he made in his blog struck home with me.  Patrick described how he hid the truth of his illness from his wife so that she would not become upset over the news. When I read that, I wanted to reach out and give him a hug and say, “I know.”
Who, as a caregiver, has not been in the position of putting on a smile to hide the true emotions they are feeling?  I have been very fortunate (so far) that I have not had any serious illness to hide, but I have learned that I must be careful what I share. I remember coming home from a medical appointment where my healthcare provider warned me that if I didn’t get some sleep, I was likely to become very ill…and then who would care for Lynn?  More than a concern about my own health, I started taking measures to address the warning so that I would be around to care for him. 
I admit though, I told Lynn what the doctor said.  He initially took it in and encouraged me to follow the doctor’s advise.  Then I started noticing that depression was setting in for him.  He would be on the verge of tears and he was constantly asking me how I was feeling.  I realized that while I felt responsible for him, he felt guilty for the potential harm he was causing me and he was having a very difficult time dealing with it.
In the spirit of full disclosure, I will share that I am sometimes evil.  Sometimes I am so tired of being tired and I’m hurting all over from muscle strain and the burden of doing everything, and I just want to escape…then he calls, “hey, sweetie!” to scratch an itch for the 10th time in an hour or to adjust his clothing…AGAIN… or something else he needs when I’m in the middle of trying to get something done that REALLY needs to be done.  I admit in that moment, I want to make him feel guilty so that he stops needing me so much.  I tell myself that he doesn’t really need that much attention or that he just wants my company so he’s making up reasons to call me, or he’s just being plan unreasonable and impatient…. I’m angry and resentful of the situation so I say something that I think will make him feel sorry for me.  I hope you all will not think too badly of me but at those times, I’m evil and mean.  I don’t like myself after that and when I see I stuck home with what I said to him and he’s feeling guilty then I feel awful and try to make it up to him…but I admit, it happens…especially at night when I’m tired.  It’s embarrassing and I feel guilty that I’m so petty but it’s true unfortunately.
I’ve found that I have many secrets as a caregiver.  I keep my fears a secret (when will he get worse, what do I do about a caregiver, how can I manage repairs, etc.)  I keep my desires secret (I want to escape, I don’t want our life to be this hard, I don’t want to move one day)  I keep concerns about my health a secret (are those just stress palpitations? do I need surgery on my thumb joints?) I keep my “bad” self secret–my grouchiness, my frustrations, my resentment at times.  
I keep all these things secret because I don’t want to hurt Lynn.  Some of it he knows by observation and experience anyway (especially my grouchy nature)  and sometimes I share just enough to prepare him for what may come but not so much as to drive him into a depression.  It’s tough being the strong one though.  Sometimes you just want someone else to carry the burden awhile.  That’s why I wanted to give Patrick a hug and say, “I know.” 
To Patrick:
I’m praying for you, Patrick and wish you the very best. I’m so glad the surgery was successful and you dodged the bullet, but right now, it’s time for someone else to care for the caregiver.  God Bless.

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