Ms Journey

Preparing for the Week Ahead

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Always be Prepared.  That was the Scout motto when I was a kid and one I’ve taken to heart for survival purposes now that I’m a caregiver. The need to always have a “plan B” keeps me on my toes and planning ahead for the “just in case” life I now live.

Today is Saturday.  So far this morning, I’ve spent the majority of my time cooking large pots of vegetables.  I try to keep several containers of all the essential foods Lynn has to eat each week in the freezer.  By cooking in large quantities, I can work up to the last minute and pull a meal together out of the refrigerator or freezer without needing too much lead time. In fact, I have a freezer in the garage devoted to his food.  I usually cook about 15-20 servings of something at a time and put them in individual sized plastic containers. I then slap on a label of what’s in it and when I cooked it and off it goes to the freezer to be stacked with the others of its kind.  I do the same with my meats. I fill my oven with the meat of choice then create 3-4 ounce servings for use at a later time.  Then for the meal, I pull containers, dump them on a plate, cover in tin foil and wa la, I have a meal to throw into the oven to slowly heat till I’m ready to serve.
I’ve got a similar process for clothing.  Lynn has certain clothing that he prefers to wear. After discovering what styles and fabrics don’t annoy him due to binding here or a twist there, I buy lots of them to have on hand so I only have to wash clothes twice a week.  He doesn’t have much variety but he doesn’t seem bothered by that.  He’s into comfort and I’m into ease of care and together, it works out well for us both.  Therefore, I have a drawer full of gray toe socks (individual warmth for each toe), button V neck ¾ length sleeve baseball-style T-shirts, and stretch base-ball slider shorts that have slight padding on each side which protects his skin as he moves in the wheelchair.  Each part of his wardrobe is specifically designed to accommodate his special needs.
For short trips to the doctor (which is about the only place we go anymore), I have a tote bag that comes along.  Much like the diaper bag Moms carry for their young, I have a bag full of necessities.  I carry enough catheter kits and supplies for the number of times I expect he will need to have his bladder emptied while we are gone. But I also carry two extra of everything, just in case, AND an indwelling catheter insertion kit and catheter in case the car breaks down and I have to use up my spare intermittent catheter supplies. Besides catheter supplies, I carry a spare change of clothes, wipes, and an air pump in case the air cushion he sits on springs a leak. (For longer trip, I actually take an extra air cushion with me.)
Continue reading at: http://multiplesclerosis.net/living-with-ms/preparing-week-ahead/

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Just Because It Can Be Done Doesn't Mean It Should Be

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With much excitement but a little trepidation, Lynn and I returned to church last Sunday.  We had not been able to attend there since he started requiring the use of a wheelchair to get around.  When he first came home from the hospital in 2010, he was too weak for almost a year; then as his strength improved he started using Rebif and just felt too bad.  Finally, he switched to Tecfidera and was strong enough and felt well enough to return to church but then we measured the old elevator and realized he couldn’t get his wheelchair in it and then be able to make the 90o turn to get back out again. So we resigned ourselves to listening to the previous week’s sermon each Sunday morning as our worship participation.  Then our prayers were answered and after several years of planning and fundraising, the church has expanded the building and part of that expansion was a wonderful, large, smooth-running elevator!

Last week was the first week the county had given the church an occupancy permit so the elevator could be used.  We got word on Friday that all was good for us to return on Sunday.  I have to admit; we were nervous.  For one thing, we were not sure about where everything was or how to use it but figured we could work it out when we got there. Second, while Lynn has periodically gone to doctor’s appointments for extended periods, he has not been in a setting where he could not move around, adjust his wheelchair tilt to lie back, or be able to have other comfort measures performed for the period of time he would be in church.  We prepared by limiting his liquid intake that morning while increasing his protein and carrying a smoothie for him to drink as soon as service was over. That seemed to work; no unexpected bathroom trips during the sermon.
Another concern was clothing.  At home he wears layers due to his difficulty in regulating body temperature.  Also, his waistline is impacted by the baclofen pump implant so getting suit pants on was going to be a challenge.  Therefore, we had ordered dress pants designed for people who used wheelchairs.  The butt is “out” on the pants so that the back is a panel that wraps around and snaps into place. It worked perfectly. They were also light weight but heavy enough for when he felt cool.  A pull-over collar shirt completed the outfit.  Since our church members usually do not wear suites, he would fit right in.
Continue reading this post at http://multiplesclerosis.net/living-with-ms/just-can-done-doesnt-mean/

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Life Lessons from Caregiving

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

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Sometimes, Ya Just Have Ta Laugh….

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People have different ways of relieving stress and frustration and as Lynn’s condition progressed from independence to total dependency, I think we have used them all.  Most provide some relief but some work better than others.  For us, the method that works the best is laughter.

Now when I was a kid, I was told that it was not nice to laugh at someone else’s misfortune so when someone would fall or something embarrassing would happen to them, I would feel sympathetic rather than laugh.  For myself, I hated to have any attention called to me so if I had a publicly embarrassing moment I would withdraw and hide hoping no one would notice.  However, Lynn has never taken himself too seriously.  He could make a public faux pas and it would just roll off his back as he laughed about it–an ability that has come in very handy over the years.
I remember the first time I laughed at his misfortune I felt guilty.  Now, however, I try to find the humor in difficult situations and it makes them a lot easier to handle. I can remember a time when he fell in the bathroom after getting out of the shower-butt naked.  He landed between the shower stall and the commode.  He was in the small bathroom; just big enough to put in a shower, commode and sink and not much else.  Here is my 6’husband sprawled out in a rather awkward position at the end of the day when he had no energy left to help himself up.  He could have gotten seriously hurt!  I immediately ran to check on him when I heard him fall and went to work shifting body parts one way and then another trying to gain leverage somewhere so that I could get underneath him to maybe be able to get part of him on the toilet so maybe I could push something else underneath to gain more height.  We worked and we worked and we worked until finally, in exhaustion, I started to laugh.  Looking at him with my hands on my hips, I say, “It’s another fine mess you’ve gotten us into Ollie.”  Then we started talking about “what if” someone saw what we were doing and their reaction.  It just got funnier and funnier as we described what they might “see” or think.  Finally, the tension was released; we had a new idea come from the absurd suggestions we were making; and I finally got him off the floor and onto the toilet where I could move him to the rollator he was using then.
There was another time we laugh about often where “Murray’s Law” was working overtime.  Lynn’s book, Rising Tide, had recently been released and we had been invited to appear on a local public television program to talk about why he took up writing and how we coped with his changing needs associated with having MS.  It was a great opportunity and we were both excited.  Well, it was raining. This was before we had the conversion van and even before he was using a wheelchair (though he used the seat on his rollator like one).  I rolled him out to my Impala, lifted him into the car, in the rain, and off we went more than a little damp for our television appearance.  The studio was an hour away. We left a little early because I was unfamiliar with the area where it was located.  We drove back and forth and back and forth trying to find it (we had no GPS) making us very nervous that we were going to be late.  We finally found it and unloaded, this time in a drizzle.  They rushed us back to the studio where we would be interviewed so we could have a brief rehearsal before the taping.
continue reading at: http://multiplesclerosis.net/living-with-ms/sometimes-ya-just-ta-laugh/

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Lessons Learned From a Short Trip

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I previously published an article (June 26, 2014) entitled, “A Short Trip Back Home.”  In that post I talked about the fact that going away for a weekend took just about the same amount of preparation and packing of equipment as going away for a week. Now, I want to talk about “lessons learned” from that short trip.

I have to say that this trip back home was one of the most miserable we have taken in quite a long time.  Maybe that’s due to the fact that we have not tried a short trip since Lynn became restricted to the use of a wheelchair but I think it just speaks to the complications of taking trips. Why was it so much worse?  There are two possible reasons I think for the difficulty of this trip–the first being that Lynn is being detoxed very slowly for heavy metals. The detox process makes him VERY tired on top of the MS fatigue that is a constant in his life. Needless to say, I couldn’t count on him to help in any way with the process and because he didn’t have the energy to lift a finger, literally, he was more needy than usual and was unable to recover from traveling with just a night’s rest. The second reason was that when we go on vacation, usually, my daughter and son-in-law come over to help me pack up the van. That means I can continue to work on meeting Lynn’s needs while my son-in-law packs everything I have assembled into the van. This time I packed and had Lynn to care for all by myself.
Lessons Learned
Lesson 1:  Take two days off to get ready for the weekend trip instead of one.
I took the day off before the trip to make sure I would have everything ready to go and could get started on time. It’s a five hour trip, I wanted to get at least six hours of sleep before I left, and I wanted to be there no later than 5 p.m. because I wanted my best friend from school to come over to visit for a short time.  I had not seen her in MANY years and we were going to be staying just a mile or two from her home—perfect opportunity to catch up with each other, or so I thought.
Since I had to take his food with me and since I was not going to be home to do my weekend cooking for the coming week, I had to do quite a bit of cooking the day before we left. All this cooking is why I should have taken the extra day.  Between cooking and doing laundry, I wasn’t able to do much packing the night before.
Since I didn’t get to bed before 3 and wanted (needed) at least six hours of sleep to be able to stay awake to drive, I didn’t get up till 9 the next day. Our morning routine takes 3 hours so that brings us to noon.  It’s a 4 hour drive if we have no stops along the way so we maybe we could still make it to the hotel by five???
Lesson 2:  Don’t try to do it all yourself.
I put Lynn to bed to rest before the trip while I started packing. While he’s been detoxing he’s been taking a 1-2 hour nap each morning. I put in an indwelling catheter for the nap and trip and proceeded to pack the van.
As I looked at the magnitude of equipment and supplies that I needed to take, I realized I needed to take out the bench seat in the back of the van.  I managed to remove the bolt securing it to the floor of the van but then I could not figure out how to unlatch the seat from the floor.  There’s some type of safety hook in there that I could not figure out and with my weak arthritic hands, I couldn’t get it to come loose so I had to give up and screw the bolt back into place (many tears and words left best unsaid were involved at this stage) and just pack around it.  By now it’s around 2 p.m. (plus 4 hours for an arrival time past 5…maybe I can reschedule my get-together?)
I get Lynn up after I finish putting all the bags and suitcases in the van. I take care of his comfort needs and then I’m ready to load him into the van. Part of the floor space needed for him to maneuver into his place in the van is taken up by a shower chair and cooler of food. It appeared at first that I would have to unpack them but at last, he shifted back and forth enough to roll into place.  Of course, then I had to crawl around and lock down the wheelchair and all the other items so that nothing would shift during transit and smash us into unconsciousness as we traveled.  I managed several moves that would have made a contortionist proud.  At 3:30, we were finally on our way.
 
continue reading at: http://multiplesclerosis.net/living-with-ms/lessons-learned-short-trip/

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I've Felt Worse

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

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When Reality and Dreams Don't Mix, No One Wins

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The light was flashing on my answering machine when I came home from going into work to meet my “one day a week onsite” obligation.  Lynn has difficulty answering the phone before it automatically rolls to voicemail so we don’t even try to have him do it when I’m away.  I checked the message and excitement spread throughout my body—someone was calling to see if we might be interested in selling the land we had.  She explained they had lived in the area for a while and needed to build a house to accommodate her husband’s wheelchair.  She shared in her message that she had seen that we had a foundation started on the land but that it appeared to have been sitting there a while and wanted to know if we might be interested in selling.
I was so excited!  I’ve been hoping to sell that land for years now even though it did not have a “for sale” sign posted. Was God sending me an answer to prayer?  Would it really be this easy that I could finally get that land paid off and maybe have enough left over to pay some bills as well?  Even if there wasn’t money left over, it would mean being able to pay off the $43,000 loan on that land!  We would lose a lot of money, no doubt, because we had a lot of money invested in the land.  We had paid to have approval for a pond to be built (which never was); Lynn had spent two years putting in a cinder block full basement and foundation for the planned timber-frame house; we had the timbers already cut for the tongue and grove frame sitting in a storage container on the land.  All of that would certainly be lost in any deal because it was needed for our house and probably would not be of interest to anyone else. However, I was willing to let that go because the reality is….I don’t want to move there anymore.
We bought that land in the early 2000s.  Our children were still in high school.  Lynn had not been diagnosed with MS.  He was a carpenter and after we got married, he wanted to build a house that was “ours” and not live in the one that I had built with my first husband.  He drafted plans for a timber-frame house that was beautiful. We found the perfect land that would support a full basement (where the children’s rooms would be)with a main floor two stories high with an open ceiling and a loft on each side of the second story with nothing but windows in the back.  A full wrap-around porch, a stone fireplace, an attached two car garage on six acres of land with access to a pond in the back. It was going to be gorgeous!  Plus, just in case Lynn did get MS one day, the doors would be wide and we were considering installing an elevator for access from the ground to the main floor.
Lynn started to work on it…slowly.  He was doing it all himself.  First, he waited on the Corp of Engineers to approve the pond installation.  Hurricane Katrina caused a two-three year delay waiting on the pond.  We finally stopped waiting on that and he started putting in the foundation. He laid the cinder block, alone for the most part, after work and on weekends.  Then, five or six years into the project, he was diagnosed with MS. At first it didn’t bother him but gradually, he couldn’t work without a helper (me or one of the boys) and then he couldn’t do more than an hour at a time before he was too exhausted to keep going.
Now it’s been four years since we have even set foot on the land.  The house we live in is in bad need of repair and maintenance which he can’t do and I don’t have time or know how to do it.  The economy is such that selling our current home and making enough to be able to afford to build the new home is unlikely with all the repairs needed here; plus where would we live till the new house could be built?  The timbers previously cut have dried over the years so it’s unlikely they would fit together well without being re-cut and adjusted.  It would take a lot of money to build that house now.  Plus, my daughter is now married and lives ten minutes away with her husband and most importantly, my grandchild.  She and her husband help us out so much and if we moved, they would not be able to do.  So, in my mind, I’ve let go of the dream and faced the reality that we need to sell that land and recoup whatever amount of our investment we can so we can do repairs on this house and pay off many of our mounting bills.   Therefore, this call was a blessing in my mind and I excitedly danced down the hall to tell my husband.
Whose face immediately crumpled at the news as he fought hard not to cry….
continue reading at: http://multiplesclerosis.net/living-with-ms/reality-dreams-dont-mix-one-wins/

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How FMLA Supports Caregiving

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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.
continue reading at: http://multiplesclerosis.net/living-with-ms/fmla-supports-caregiving/

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Caregiving and Work

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The type of employment you have when you become an adult makes all the difference in how you live your life.  It dictates when you’re asleep or awake, what you wear, what you’ll be exposed to, the type of people you will encounter, and your standard of living (unless you are independently wealthy or someone else contributes to your income).  Though it’s possible to change some of these by changing where you work, the bottom line is that work plays a significant role in our lives. Besides the income we derive from being employed, many jobs also provide benefits, social interaction, a sense of accomplishment, ways to enhance our self worth through positive contributions, and an identity (while especially true for men, for many (but not all) women, it’s equally true). There’s a lot of positive to be said for working.
On the other hand, “work” can bring a source of conflict.  When you’re employed, your employer counts on you to be present, timely, focused, energetic, accurate, cooperative, cordial, and do your very best on their behalf at all times.  If they need you to switch up your hours, they expect you to be able to make any necessary personal adjustments to make that happen.  For most employers, (though they might not say it) they expect your job to come first.  Many say to their employees, “Leave your personal life at the door.  When you’re here, you should not be thinking about anything else but your job.”
Though working can be a good thing, being a caregiver and an employee are often in direct conflict with each other. For instance:
Employers expect employees to be at work and on time. That expectation is often difficult, if not impossible for a caregiver.  A caregiver needs to provide the following for him/her self and dependent prior to arriving at work:  grooming, dressing, toileting, feeding (preparing, feeding, and cleanup), oral hygiene, and preparations for the day—any one of which can lead to a delay beyond their control (clothing that gets soiled after dressing has occurred, toileting that takes twice as long as usual, food spilling on before-mentioned clothing, emotional breakdowns needing attention, equipment that does not work, etc.)  For myself, I have to plan to allow three hours for “us” to get ready if I’m going somewhere and I still find that my being on time can be unpredictable.
Employers expect their employees to be well-rested and energetic.  Caregivers often get as much sleep as is available between the time they finish up one day and start the next.  Dah, doesn’t everyone?  However, the amount of times to finish a day varies depending on their dependent’s needs on that day.  Sometimes they go to bed when planned; other times a load of laundry is unexpectedly needed and they’re up an extra hour or two.  Sleep time, for the caregiver, is also interrupted by the need to assist their dependent with comfort and bowel/bladder elimination during the night.  Therefore, well-rested probably means just enough sleep to be functional and the amount of energy they have is directly proportional to the amount of caffeine ingested and still in their system.
Employers need their employees to be focused and provide accurate and competent performance.  Being focused for a caregiver is a question of being focused on what?  The caregiver always has to be planning ahead to make sure he/she is ready for the next big event and is required to coordinate all their dependent’s activities and needs whether in their presence or if receiving assistance from someone else.  It is not uncommon that a caregiver would need to call a doctor or therapist while at work to discuss a new development, arrange for equipment or supplies to be repaired and/or delivered, or to talk to the secondary caregiver regarding a question or concern that has arisen.  Caregivers have to have the ability to have split personalities at all times because when at work they need to be able to address effectively their work duties while at the same time managing the life of their dependent. They, in fact, do have great talent at being focused but the need to switch focuses repeatedly is where the problem comes in.
continue reading at: http://multiplesclerosis.net/living-with-ms/caregiving-work/

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A Short Trip Back Home

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

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

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Moment by Moment

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

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

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The 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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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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"You've Got This" Campaign

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Healthline just launched a video campaign for MS called “You’ve Got This” where individuals living with MS can record a short video to give hope and inspiration to those recently diagnosed with MS.
You can visit the homepage and check out videos from the campaign here:http://www.healthline.com/health/multiple-sclerosis/youve-got-this
Healthline will be donating $10 for every submitted campaign to the National MS Society, so the more exposure the campaign gets the more the videos they’ll receive and the more Healthline can donate to MS research, support groups, treatment programs, and more.
If you know anyone that would be interested in submitting a video, please encourage them to do so.

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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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Batten Down the Hatches! Snow is Coming

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For you folks who have lived in the northern states, the reaction of us mid-Atlantic residents to the threat of snow must look like a bunch of panicked rats in a maze.  The reason for this panic is that most people are spoiled by the ability to run to their neighborhood (insert store here) to pick up whatever they want whenever they want it. The knowledge that they might not be able to buy bread (or beer) for a couple of days seems to strike fear in the heart of grown men.
When I hear we might have snow or ice, my first thought is to get the generator ready.  I live in a rural area that is not in the “priority” grid even though Lynn at one time had to use an electric external ventilator type device when he would try to sleep.  At that time, we were told to fill out special forms to make sure the electric company was aware of his medical need to have access to power to run necessary medical equipment.  We filled out the information and I assume it’s still on file somewhere but realistically, it didn’t seem to make any difference. With more and more people who have special needs living at home, I expect every grid has someone with a special needs form on file with the electric company so it goes back to the number of residents per grid and where they (the electric company) gets the biggest bang for their buck.
Ready the complete post at http://multiplesclerosis.net/living-with-ms/snow-is-coming/

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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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