Donna Steigleder

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

Thankful to Be a Caregiver

/

Being a caregiver is difficult.  It’s a lot of hard work; it’s emotionally trying; it’s downright exhausting…but it is also very rewarding.  I try each day to come up with at least one thing that I have done or used or seen or thought about that I am thankful for and I highlight that on my Facebook timeline.  I admit there are times when it is difficult to find something but when I am struggling to come up with a topic, it also makes me realize just how much I have and how truly blessed I am. Today, I want to share with you why I’m thankful that I’m a caregiver.

  1. I am able to give back

Lynn has done so much for me since we have been married.  He is my #1 cheerleader. When he was able, he kept our house and cars in working order but that was just a task.  He was also the best chef that has ever cooked for me (I really miss that because I don’t like to cook). But more than anything, he was there to share with me in good times and bad times; in fun times and stressful. He gave totally and completely to me and now I can give back—not that I didn’t before, but now it is with focus.

  1. I am able to have some control of this situation

One of the most difficult emotions for me is feeling out of control.  I cope better when I feel like I have some control over what is happening. By being his caregiver, I have the ability to control how well he is cared for; I know what he needs, when he needs it, and he likes it done.  I can decide how to manage situations in the best interest of us both. I don’t have to call someone else and hope they are actually paying attention and really telling me the truth.  I don’t have to worry that he has been ignored or that he is hiding anything from me to spare my feeling—I KNOW what’s going on with him and that knowledge makes my life easier.

  1. I am able to share in the two minutes or less joyful moments

I have a very dry sense of humor and Lynn has a silly one.  Together, we can encounter a situation and between the two of us often one or the other has a slanted view of what’s happening, shares that perspective and we share a good laugh.  Our sense of humor allows us to face the challenges without taking them too seriously and helps to take the edge off the sharpness of our lives.  I enjoy those breaks from the seriousness of life and if I was not taking care of him, I would miss those.

  1. I have been able to share my caregiving experiences with others and been blessed by their feedback

continue reading at: http://multiplesclerosis.net/living-with-ms/thankful-caregiver/

Thankful to Be a Caregiver Read More »

Is This It? I Thought It Would Be Bigger

/

For the past year, I have excitedly looked forward to this year’s beach vacation.  I have dreamed about how awesome it would be, talked about it with anyone who would listen, and looked forward to it like a child looking forward to a Christmas Eve visit from Santa. I was so excited because I thought I had found the perfect place for Lynn to go that would meet all his needs and allow the rest of the family to have a great time. This place sounded perfect.  It had an elevator, roll in shower, mobility assistance devices, wider doors, and a pool that slanted so he could roll into it on a floating wheelchair.  It sounded perfect…
Reality set in when we arrived. The first disappointment was that I misunderstood how high the elevator went in the house. I thought the elevator went to the top because it went to the second floor; however, this house has three floors.  I counted the first living area as the first floor and the entrance floor as the ground floor so when I asked if it went to the second floor, they said it did (and were correct) but I envisioned the third floor as the second floor instead. I was very disappointed because my parents and Lynn’s Mom have difficulty with steps.
Next issue: the elevator.  When we first arrived, I read the sign that said the elevator only held 500 pounds so between Lynn and the power chair no one could ride in the elevator to operate the controls.  He has very little hand strength so operating the elevator on his own would be difficult and frustrating.  I finally found the switch the next day to control the elevator from outside the cab so even though I was disappointed initially, it all worked out.
Then, we went to our room.  It was the smallest room in the entire house and I had more than twice the supplies and luggage needed for a week’s worth of living and caring for him.  Though it had a roll-in shower (a big plus), the actual space in the bathroom was very limited.  Then, when I tried to sit Lynn on the toilet, it was a disaster.  The toilet was sitting so close to the wall that the handrail placed on that wall to assist someone in getting up or down prevented him from being able to sit in the center of the seat.  His spastic arm was not able to be moved beyond the height of the rail and he was sitting in extreme discomfort besides not being safe.  I had to quickly get someone to hold him while I went to get the shower chair for him to sit on. However, the shower chair didn’t have a bucket so it could be used as a toilet chair so I had to improvise by using a lined trashcan–not a good experience.
The bed in the handicap accessible room was a queen size and took up most of the room.  That left very little room to maneuver his power chair so I had to move the bed against the wall to make more space.  The bed was high so it made transfers to and from more difficult.  While there was a TV in the room, it was small and difficult to see from a distance. The bathroom sink was just a sink and no vanity (though there was a good sized medicine chest there).   All and all, very disappointing and not handicap friendly….at least for his handicap.
And that’s my point… “his” handicap. This beach house is actually awesome. It’s big and spacious with lots of amenities, a wonderful pool, and lots of space on the second floor to move around.  I’m sure that if it was used by someone who did not need to share a room, who only used the over-head lift equipment to get in and out of the bed, whose toileting was not done on the actual toilet or who managed it without assistance, the challenges we had with the room would not be an issue.
I complain often that a “handicap accessible” label is a distinctive misrepresentation of most places.  Most of the time it just means handrails or bars attached to the wall in the bathroom.  I’ve never actually been to a place that was really equipped for someone totally mobility challenged.
continue reading at: http://multiplesclerosis.net/living-with-ms/thought-bigger/

Is This It? I Thought It Would Be Bigger Read More »

Who Can Afford Respite Care?

/

Before I get started on this blog, I want to write a disclaimer:  I’m very tired and having difficulty this week coping so if you are a caregiver; read on—you probably have felt the same way.  If you are someone with MS, maybe you better skip this one.  It’s not meant to cause you guilt or pain but unfortunately, it’s how I’m feeling right now.

So what’s wrong with me today?  I’m tired.  My body aches.  And though it’s 8:30 at night when most people are starting to wind down, I still have many hours to go.  Nothing out of the ordinary going on today; it’s just a regular day, but that’s why I’m feeling down…Not depressed; just down.
Do you ever just feel like you want to run away?  I do.  I want so much to have a couple of days in a row where I only take care of myself.  I really feel like I need to get away but I also know that is not going to happen.  You may be thinking, if you’re a parent of a young child that you are also in the same situation, but unless you have a special needs child that is not likely to leave home, I’m going to challenge you on that view.  When your child is totally dependent on you, they are still small enough that you can lift them fairly easily.  Chances are they weigh less than 50 pounds. The person I’m caring for weighs 195 pounds, is six feet tall, and can’t move a muscle independently. While your child is taking up every spare minute of your day, you know they are going to gain independence, and as they grow and learn, they will become even more independent until eventually they will either leave home or if they stay at home, you can ignore them. You have the “empty nest” to look forward to.
I don’t.
Not trying to be morbid here but my responsibilities are only going to get more demanding; not less. As I grow older and have less strength and more discomfort, his needs will only be getting greater.  Our situation will not get better until one of us dies … and the fact is, I’m just as likely to be the one to go as he is since the life expectancy for a full time caregiver is less than the average population’s of the same age.  I sometimes feel that the only way I’m ever going to get any rest or really be able to rejuvenate is to become hospitalized myself.
I know I should not be complaining like this; I have people come over almost every day to help Lynn with his writing.  Most of them also feed him his breakfast, get him what he wants to drink and help him with small comforts.  However, in order to be able to use their services, I have to get up three hours before they arrive to get him ready for them.  Then once they leave, I have hours of work to do related to his care as well.  Each morning my alarm goes off and Lynn is telling me to get up; he needs to empty is bladder as soon as possible. So I can’t linger in bed and stretch or gradually to wake up anymore.  Then we spend a half hour to an hour in the bathroom where my tired, tight-feeling body lifts him onto and off of the toilet.  Finally, I lay him down to get him off his butt since he sits up to sleep. I want so much to not have to get up each morning; to not spend three hours lifting body parts that are heavy and dead weight; to not feel so exhausted I can hardly move.
But I can’t.
Continue reading at: http://multiplesclerosis.net/living-with-ms/can-afford-respite-care/

Who Can Afford Respite Care? Read More »

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.

Continue reading at: http://multiplesclerosis.net/living-with-ms/hydrotherapy-option/

Would Hydrotherapy Be an Option? Read More »

The Importance of Skin Care

/

Of all the caregiving responsibilities I do on a daily basis, the one I think that is most important is inspecting and caring for Lynn’s skin.  For most people, if they get a cut or a scratch or other skin irritation, it’s no big deal.  They get a little Neosporin ointment, slap a Band-Aid on it and go about their usual routine.  For someone who spends 20 out of 24 hours sitting in a chair, when I examine his buttock and find a skin tear, it’s definitely an “oh, no!” moment in my life.
Did you know that the skin is the largest organ in the body?  It has many purposes; protects us from nasties crawling into our body, warns of danger, regulates temperature, manages waste, and other things.  For skin to be healthy, diet, hydration, hygiene, and circulation are essential. If any of these are out of balance, the skin is not as able to defend itself.  With someone who has MS, and who spends a great deal of time in one position, Lynn’s greatest risk to skin breakdown is circulatory.  As gravity tends to pool blood into the lowest regions of his body, his greatest risk areas are his buttock and feet.  His buttock because the majority of his body weight is compressing the blood flow to his buttock as he sits and his fee because they are further away from the heart and his muscles in his legs are severely compromised. He uses an electronic peddler to keep his legs moving and circulation flowing better but his feet are secured to peddles with bandages so they will stay in place resulting in potential areas of friction.
His buttock is even more at risk. He sits on an air cushion all day which helps but that doesn’t totally remove the fact that this 195 pound man is putting the majority of that weight onto to a tail bone that has almost no fat on it anymore.  There is very little fat cushion remaining between the bone and skin so as moisture builds from body heat causing sweating,  and as his legs slightly move with the peddling motion or occasional shifting of his weight, friction occurs. If the skin is in good shape, it can withstand the movement and all is well.  If for any reason, his skin is inflamed due to too much pressure in an area, irritation from toileting, or the skin has become mottled then it’s more prone to sloughing or tearing.
If you see irritation or redness that doesn’t get better from just changing positions, that’s a signal to spring into action. Determine what’s causing the problem: too much moisture, not enough, resting on something too hard for too long, diet or hydration needs attention, etc.  If you don’t fix what caused the problem, then the condition will get worse or if you get it better, it will return.
To prevent issues with Lynn’s feet and legs, I use a lot of lotion on dry skin to keep cracks from developing.  I use pads like band aids or the pads you can find in foot care aisles for corns or calluses. I keep his nails cut short enough that the shoes won’t push the toes together and cause a scratch. Since his feet are usually strapped into the peddles of the peddler, I put pads on both heals, on the outer side of both feet just below the little toe, and a waterproof extra-large band aid over the top of his foot.  So far, he has not had any significant foot wounds.
His buttock is another matter.  I’ve been fortunate that I have always been able to get wounds there to heal but it takes a lot of diligence to do that and if I find I can’t see healing (new pink skin rather than enlarging of the area) on my own in two-three days, then I call the doctor.  My first action is to determine if I need more or less moisture to the area.  It’s nearly always less for that area.  Obviously bandaging is more difficult as most bandages are not designed to fit around the buttock area but to work on areas that are straight.  There is also the issue of being able to keep the bandage from getting soiled.  If it does, it needs to be changed so that the wound underneath doesn’t get contaminated. If you are therefore, going to change the bandage often, it’s important to use a non-stick covering.  If you use dry gauze, you’ll need ointment to keep it from sticking so you would not be able to eliminate moisture.  I like to use Telfa or other non-stick gauze pads and secure it with paper tape.  These products keep the new skin from tearing open when the bandage is removed.  If the wound needs something to dry it out and help it heal, I use Silveabsorb gel which usually helps.
If my efforts are not working, I call the doctor for an order.  If you can take a picture of the wound to send that will often help the doctor assess the situation without requiring an office visit, but you need to do a thorough job of telling the doctor what you have.
Here are some pointers on describing the wound:
continue reading at: http://multiplesclerosis.net/living-with-ms/importance-skin-care/

The Importance of Skin Care Read More »

Preparing for the Week Ahead

/

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/

Preparing for the Week Ahead Read More »

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

/

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/

Just Because It Can Be Done Doesn't Mean It Should Be Read More »

Life Lessons from Caregiving

/

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/

Life Lessons from Caregiving Read More »

Sometimes, Ya Just Have Ta Laugh….

/

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/

Sometimes, Ya Just Have Ta Laugh…. Read More »

Lessons Learned From a Short Trip

/

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/

Lessons Learned From a Short Trip Read More »

Can You Scratch My Leg?

/

After years of caregiving, I believe I know Lynn’s body and his emotional and physical needs as well or better than my own. Actually, I probably know it better because I don’t pay attention to my own.  By becoming that familiar with him, I’ve been able to take quick action to prevent minor problems from becoming major ones most of the time. However, by being so vigilante and adapt at making these assessments, it has resulted in a different problem—Lynn expects me to intuitively know what he needs!
For example, Lynn uses an air cushion seat.  The cushion is made up of multiple rows of air bladders that disperse air away from the weighted area (where he sits) to the outward bladders.  He then sits on a small layer of air which minimizes the pressure against his buttock.  The device is great because the firmness of the cushion can be adjusted as needed for comfort.  The bad news is that the material it is made from is like a bicycle tire and wears in time to produce tiny little holes which allow the air to leak out.  I then have to find the hole and patch it so he won’t be sitting on a flat cushion.  Periodically he will tell me to “check his cushion.” Unless there is truly a leak, it’s difficult for me to know from time to time if there is an actual difference in the inflated areas. He will say, “My butt hurts.”  I’ll respond, “Do you think the cushion needs adjusting?”  He responds, “Yes.”  I ask, “Do you think it needs more or less air?” His response, “I don’t know, just check it.” I then proceed to either add or remove air to make a change of some type.  It doesn’t help to ask if “that” fixed the problem because he can never tell. This can be rather frustrating as you can imagine because he wants me to fix a problem I can’t “feel” and to know if it’s “right” through my intuition.
If I look at this behavior as him being lazy and wanting me to take all responsibility for his comfort, then I get really annoyed, but if I remind myself that maybe the reason he can’t tell me if it’s right is because he has “butt de-sensitivity” then I’m a little more tolerant.  Maybe the reason he can’t tell me how it feels is because he’s been sitting on those nerve endings so long that he has lost sensitivity in that area. Think about it…if you sit in the same spot for an extended period of time and don’t move, can you even feel your skin touching the seat anymore? After a while it’s as if you and the seat are one and it’s difficult to know what is wrong if it’s gotten uncomfortable.  On the other hand, MS affects nerves; nerves transmit signals through the skin; could MS affect transmission of touch… sure, why not?
The other “touch” issue though is itching.  He no longer has the strength in his hands to scratch an itch.  He can slightly rub an itch but he can’t produce enough pressure to really dig in and scratch. He feels the itch, he calls for me to come scratch it and says something like, “My leg itches; scratch it.”  He seems to expect I’ll know which leg, where on the leg, how vigorous to scratch, and when I’ve stopped the itching. Now, in that situation, I think he just has come to expect that I’ll “know” what he needs.  I have to remind him that I can’t feel what he feels so he will need to stay “engaged” in the process.
 
Continue reaching at http://multiplesclerosis.net/living-with-ms/can-scratch-leg/

Can You Scratch My Leg? Read More »

Marriage?

/

When Lynn and I were dating, I knew that his father had only lived to be in his forties and that he died from complications of MS. Having a medical background, I had a vague, general knowledge of the condition but primarily just enough knowledge to know that it affected mobility and the eyes and I had had a few employees make accommodate requests related to memory.  I knew that genetics was a factor, but not an absolute, in determining if he would also suffer from MS.  I also knew that while Lynn had his vises, he was good about what he ate and he exercised regularly; so, in my opinion, he was more likely to have complications from his smoking than he was from having MS.  I seriously considered all these factors and went into my marriage with full knowledge of what I might encounter.  I actually was very reluctant to get remarried, not due to the MS, but due to the fact that marriage was so difficult and even if you tried your best, you can’t control the other party. When I finally decided to marry Lynn, I went into marriage with a full commitment to staying married for sickness or health, richer or poorer, etc. I had survived one divorce and didn’t want to go through another.  In other words, my fear was not of the MS but of the relationship difficulties itself.
And, I was right to be concerned.  Those first few years were VERY difficult trying to blend two families; taking two very independent and totally different personalities and trying to learn how to compromise and adapt.  We struggled.  We had counseling.  We became distant and we sought and found ways to become closer.  We had to work at it; it did not come naturally to either of us. We were both very afraid of being hurt again and therefore, afraid of totally giving ourselves to the marriage. After all, we both knew how it felt to have loved and lost; but throughout it all, whether or not he might have MS was never a factor.
Then, one day I found him comparing how fast he could wiggle his fingers on one hand as compared to the other.   I could see the difference.  He had seen a physical therapist about occasionally having “drop foot” after exercising.   He had complained of numbness and some weakness in his left leg which was attributed to sciatica.  I asked him during those occurrences if he had mentioned his family history of MS and he said that wasn’t what it was and his doctor had his family history.  I knew then; however, that he had MS.  My daughter, who was in nursing school at the time, and I talked about the fact that we both believed he had MS.  Even his son, suspected it but Lynn was in denial.   I finally got so frustrated that I confronted him about my concerns and demanded that I be allowed to go with him to his next appointment because he would never give me a straight answer about what was discussed.
As it turned out his next appointment was with a cardiologist (he also has mitral valve prolapse).  The doctor asked him how he was doing; then, he asked me.  I told him Lynn’s heart was fine but something was wrong with his nervous system.  Lynn shot me a look of daggers but the cardiologist promptly set us up with a neurosurgeon because at the time, I thought it was possible it could be a disc issue (since he said MS had been ruled out by his doctor already).  The rest is history.  Blood work was done; as was a MRI and a lumbar puncture, and as we were driving home from an anniversary visit to the beach, he got the call that said it was MS.
I already knew in my heart what the diagnosis would be and I think Lynn knew but didn’t want toknow. However, actually hearing it still kicked us in the gut.  I have to be honest that fear of what was ahead did cross my mind. Lynn and I were distant emotionally at that time because he would not share his thoughts or his life with me.  He kept me at a distance.  I think he was afraid I would leave if he got MS.  His parents had divorced while his father had MS and though I don’t think the divorce was due to MS, it probably played a part in it.  However, for us, it had the opposite effect.
I became Lynn’s advocate.  I shielded him from too much information (at his request; he still wanted to deny as much as possible); I did all the communication with the doctors and healthcare facilities.  He finally recognized that he needed me and he let me in and though that process we are closer now than if he had not had MS.  If he had not been diagnosed with MS, who knows if our marriage would have survived?   I like to think it would have because we are both Christians who are totally committed to staying together but I’ve learned you can never say never…about anything.
 
continue reading at: http://multiplesclerosis.net/blog/marriage/

Marriage? Read More »

I've Felt Worse

/

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/

I've Felt Worse Read More »

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

/
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/

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

How Others See Me

/

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

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

How Others See Me Read More »

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:
continue reading at: http://multiplesclerosis.net/blog/really/

So, How Are You….Really? Read More »

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

How FMLA Supports Caregiving Read More »

Caregiving and Work

/

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/

Caregiving and Work Read More »

A Short Trip Back Home

/

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/

A Short Trip Back Home Read More »

Guest Blog – Seeing Through the Woulds by Dan Digmann

/

Seeing through the woulds
By Dan Digmann
Birds are chirping. Breeze is blowing. Mourning doves are, uh, mourning.
And I’m that man sitting on the deck typing.
I’m writing what seemingly are assorted random thoughts, but that’s not fair to say. They’ve been brewing in my mind for months, I’ve just never had the time to spew them in silence. I suppose I now have this once-elusive silence, sans chirping birds, blowing breeze and doves mourning.
I really don’t have the time. I’m instead making the time while turning my blind eye on the two graduate courses I HAVE to complete this summer so I can graduate this December. But it’s barely the middle of June and they’re both independent study courses. So I’m sitting here on the deck typing as I claim my independence a few weeks before the Fourth of July.
This is what I had hoped for more than 15 years ago when I first was diagnosed with having Multiple Sclerosis (link to: http://www.healthline.com/health/multiple-sclerosis/facts-statistics-infographic). Fearing the unpredictable nature of the disease, I initially anticipated the worst when I went for a walk in the woulds: Would it rapidly progress? Would I still be married? Would I still have a job? Would I still be able-bodied? Would I be able to handle all the curve balls it threw at me?
Over a decade and a half later, here I am. I’m that man, typing on the deck.
Oh yeah. I’m also drinking a beer after a long day of work at the same place I was employed when I was diagnosed with MS in 2000. A workplace that has promoted me twice since then, despite my having MS.
I’m on the deck of the house I share with the love of my life, Jennifer. She truly is my rock in fighting this disease. It’s not only because she is my spouse who vowed to love and support me in health and in sickness.
She’s been there, done that with this whole MS thing. Jennifer has a more progressive form of MS (link to http://www.healthline.com/health-slideshow/types-of-multiple-sclerosis) and has lived with it for more than two years longer than the 15 years I’ve put into it.
But Jennifer’s nowhere near at this very moment.
She’s up at the local pizzeria with her girlfriends for her monthly book club meeting. They’re discussing their reading reviews there because The Cabin serves up some of the best pizza and cheese-filled breadsticks in our close-knit Central Michigan University community. The book club also chose to meet there because it’s handicapped accessible to accommodate Jennifer’s power wheelchair.
That’s the last thing they see when they see Jennifer. They see her, not her disease. And much of this has to do with how Jennifer carries herself. MS is part of her. She is not part of MS.
Looking at the two of us together, people often mistakenly think I’m the caregiver in our relationship. That’s only half true. For as much as I care for her, she cares equally as much for me.
Together we continue to help each other wander through the ever-changing woulds of MS. It’s like we serve as each other’s trail guide and companion as we venture into our dense MS forest.
In addition to braving the “what-if” woulds, we are in the thick of the “in-our-face” woulds; such as would you give me my shot? Would you help me put on my shoes? Would you skip this event because I don’t have the energy to go out tonight? Would you rub my feet? Would you get the Hoyer lift to help me off the floor?
Would we be able to manage our life together if we got any worse with our respective disease?
This is our daily question and our every day reality. But the true reality that we’ve discovered is you never know the true answer to these questions until you’re in the thick of the woulds and are required to respond.
That’s the beauty and the key to caregiving, whether it’s as a spouse. A sibling. A parent. A child. A friend.
We always are serving as the helping hand when the other falls, both literally and figuratively, into unforeseen dips and valleys. Blazing ahead and warning of the potential pitfalls we experienced when facing similar situations in our own journeys.
So I’m that man sitting on the deck typing as my wife is at the pizza joint with her book club. And I’ll go pick her up in about 20 minutes not just because her MS makes it so she no longer can drive.
It’s because I’m her caregiver, and I said I would.
 

Guest Blog – Seeing Through the Woulds by Dan Digmann Read More »

What’s a Ratchet?

/

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

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

What’s a Ratchet? Read More »

Sometimes I Get Jealous

/

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

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

Sometimes I Get Jealous Read More »

Moment by Moment

/

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/

Moment by Moment Read More »

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

/

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

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

One Minute He's Hot; the Next He's Cold Read More »

Put Guilt Back in the Box

/

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

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

Put Guilt Back in the Box Read More »