Caregiver

Someone who provides care and assistance to someone else

Giving the Gift of Receiving

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“Giving the gift of receiving,” sounds like a contradiction.  How can you give a gift that you receive? I think you can and I think it can be the greatest gift you give and receive all year.  Here’s why.
As a caregiver for someone who is totally disabled with very limited abilities, my world is very structured and organized.  It has to be in order to keep Lynn healthy, to meet all his abundant needs, and in order to get all those things done that must be done by the end of each day. Because I must be so organized, changing my schedule or having someone come in to “help” me is often very disruptive.  I know they are well meaning and I know they truly want to help; I get that, but truthfully, it’s also disruptive even while helpful.  If someone is coming over to help, they typically want to do it first thing in the morning to get it out of the way so they can get on with their day.  I would want to do that as well so I understand why they ask to come over early.  However, in order to receive visitors, I have to make sure that Lynn’s three-hour morning routine is completed before they arrive. So if someone wants to come in “mid-morning” at 9:00 a.m. because he/she is an early riser, then I must get us up at 6:00 a.m. Getting up at 6 doesn’t sound bad except when you realize we can’t get to bed most nights until 2 or 3 a.m.  Therefore, before a visit, we are often getting a “nap” rather than a night’s sleep which compromises not only my well-being but Lynn’s since he battles fatigue.
Another concern for letting people give their help is potential exposure to infections.  When family members or close friends come over, they already know our “rule” for visiting–if you might be sick, don’t come!  That little sniffle might not stop a visitor from spreading holiday cheer but from our perspective, they are bringing in a weapon that threatens Lynn’s safety and welfare.  His immune system is compromised and an innocent, though irritating, cold for most people can put Lynn in bed or even the hospital for weeks. I remind anyone who asks to come over of our house rules, but occasionally they still show up with the sniffles thinking that they just won’t touch him or sneeze/cough in his direction and it will be okay, but what they forget is that the greater spread of their virus and other germs is not the cough or sneeze (though such an action carries the germ a good distance), it is the unwashed hands after such an event that touches something he or I use.  Since I provide all his care, not only do I have to limit his exposure but mine as well so that I won’t be the carrier into his environment or I won’t become sick and unable to care for him. Therefore, though I try to be kind, if someone is sick I often ask them not to stay and help.
Continue reading at: http://multiplesclerosis.net/living-with-ms/giving-gift-receiving/

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Planning for the Future with Our Children

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

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Managing Caregiver Chaos

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For some reason, I have found that when I have a period of peace, quiet, and routine that I can expect a similar period of chaos to arrive in the near future.  Usually the chaos that comes is more than a little disruptive and what makes it chaos is that it comes from multiple directions all at once. For instance, my life is pretty busy with taking care of Lynn and working full time.  However, in the past month, my parents have moved in because my 82 year old Mom was diagnosed with ovarian cancer and needed help when she started chemotherapy;  my mother-in-law was admitted to the hospital for excessive bleeding after a colonoscopy; my father-in-law fell and is in the hospital to rule out any broken bones; my son-in-law was in a wreck and totaled his truck (fortunately no injury); one of my four employees resigned; we received notice of a routine government audit at work that is very time consuming (and of course fell under the duties of the person who resigned two weeks before the notice came in so now it falls to me to figure out what to do); another of my employees may be facing medical problems; Lynn’s assistant who stays with him when I have to go into work can’t help because her husband has been in the ICU and last but not least, it’s Thanksgiving with Christmas right behind.  Talk about chaos!!!
How do I deal with all this chaos?
As a caregiver, one of my “bags of tricks” is the ability to adapt and be flexible; plus I never throw anything away that might be used to “fix” something later.  With that principle in mind, I have a medical supply area and an equipment area of my house to help me address any mishaps to Lynn or to my family members.  Knowing that chemo has multiple side effects many of which result in extreme fatigue and weakness, I’ve set up Mom and Dad’s room with all my discarded support equipment from Lynn’s early days with MS that were geared toward preventing falls and conserving energy.  Also, rather than being her caregiver, I direct Mom’s care and let Dad do the actual hands-on as much as possible.  That practice frees up my time for Lynn and allows Dad to continue to care for Mom.
Most of Lynn’s Mom and Step-Father concerns are taken care of by his sister; however, one of our main concerns for them is if they fall and can’t get help.  His Step-Dad is legally blind now and his Mom has a neurological condition that results in very limited strength so if he falls, she can’t help and if she falls, he would have difficulty determining how to help her as well.  Therefore, we have bought them emergency alert buttons to wear so they will have access to help when no one is around.  By knowing they can get help, Lynn is not as anxious about their welfare or as frustrated in not being able to check on them.  If he’s less anxious, then his demands on me are less as well.
With work heating up and becoming more demanding, I’ll need to go into the office more often.  Therefore, I’m working on identifying other resources to stay with Lynn while I’m away.  Having Mom and Dad here is an unexpected help in that regard in that my brother and his wife are able to come help with Mom and Dad and have offered to stay with Lynn occasionally, as well, if I need to go into the office and Lynn’s assistant is still not available.
My best strategy for dealing with chaos though is “don’t sweat the small stuff.”  I do just enough cooking and cleaning to meet essential needs.  I don’t push myself to attend events that aren’t essential or take on projects that deplete my energy level.  I am giving myself permission to stop work at a decent hour and using paid leave to make up work hours so I can get sufficient sleep to have the energy needed to keep going every day.
Continue reading at: http://multiplesclerosis.net/living-with-ms/managing-caregiver-chaos/
 

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Thankful for MS?

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In as much as we have recently experienced the Thanksgiving season, I was thinking about the impact Multiple Sclerosis has had on our lives and trying to think of reasons why I could be thankful for MS.  What comes to mind first, of course, are all the challenges but if I really focus I can think of several rewards I have received related to this condition. Here are a few.
Our Relationship
Coping with the challenges of MS has made Lynn and me closer.  Before MS, we were two married, independent partners. We each functioned well alone so there were many aspects of our lives that were not shared.  Due to his dependence on me for just about everything, we are truly one now. We share thoughts and fears, good times and bad as a team rather than as two people with their own agendas. It has made us recognize our own unique needs and struggles and we have more respect and admiration for each other as we recognize how each of us sacrifices for the good of the other.
For the People I have Met
In many cases, there is an instant bond when I meet another person who has MS or is a caregiver for someone with MS.  Instantly, I know the challenges faced and perseverance required every day just to get by if they are dealing with this complex condition. Though that understanding, there is a connection that does not exist with those who have not had to face those same experiences. I now have friends I’ve met through blogging that I expect never to meet in person but who share with me their concerns and offer support for mine.  I’ve also met many health professionals who have been awesome and who have offered so much assistance and encouragement to both of us. I am thankful for each of them and the efforts they have made on our behalf.
Continue reading this article at: http://multiplesclerosis.net/living-with-ms/thankful/
 

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Handling Grief

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I attended a webinar today called, “Grief: What Helps When It Hurts” by the Hospice Foundation of America.  I was interested in this presentation because I work with a lot of employees who have lost family members and struggle when they return to work. The focus of the presentation was about grieving the death of a loved one but many of the principles presented also apply to the grief we experience as caregivers.
The effects of grief are vast.  Grief can have a physical, emotional, cognitive, behavioral or spiritual impact. How someone reacts to grief is very individualized and impacted often by their own health, their relationship with the person who experienced the loss, and what they believe is the acceptable way to cope with the loss.  It’s a roller coaster ride that lasts a long time and may come back to hit us in the gut when least expected.  Let me share with you how grief has affected me.
First, let me say that Lynn is very alive and aware.  What I am grieving is not his death or even an anticipation of his immediate death.  What I am grieving is the loss of how he used to be.  I grieve such things as the loss of all the things he did for me, the fact that we could go out and share in activities together, his ability to be independent, and my freedom to have time to myself. I miss his singing, the drama programs we used to do together, the ability to go visit family and friends or even go to a movie.  I grieve the fact that he will never be “able-bodied” again; never able to do what he wants to do when he wants to do it. I grieve the loss of the dreams we had for a new home, travel, and financial security by the time we reached retirement.
The physical side of my grief shows up as constant fatigue, headaches, body aches (though that could be the constant lifting I do for him, too) and irritable bowel syndrome.  I also am overweight due to eating to keep my energy level up and to stay awake because I typically don’t have the option to get more than 5-6 hours of sleep a night.  I occasionally have heart palpitations and swollen ankles. It’s difficult to tell if these issues are related to grief or lack of sleep or excessive physical demands but I suspect they are all intermingled.
Emotionally I have periods of sadness, anger, anxiety, and fear—sometimes separately, sometimes all at once.  I can be feeling sadness immediately after a good experience or anger about being afraid.  Emotions run from subtle to extreme all in the same hour though most of the time, I just feel numb.  I’ve learned to compartmentalize my emotions; to separate them from what is currently happening so I can maintain control.
Cognitively-I can become forgetful.  Lynn tells me things and if it’s not “essential” information, I can’t remember any aspect of the conversation. It’s like I’ve had a black out.  Last week I was assembling his medication for the week and I lost one of his bottles of pills. I knew I had it just moments before but I searched everywhere I could think of to find it…unsuccessfully.  The next day I was sitting at the kitchen table and saw the bottle sitting on the “ice dispenser ledge” on my refrigerator door. That ice dispenser doesn’t even work!  I have no memory of putting it there or seeing it when I was looking for it–total loss of recall.
Continue reading this post at: http://multiplesclerosis.net/living-with-ms/handling-grief/
 

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What Happens When It's My Turn?

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

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Thankful to Be a Caregiver

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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/

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Is This It? I Thought It Would Be Bigger

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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/

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Who Can Afford Respite Care?

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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/

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Would Hydrotherapy Be an Option?

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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/

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The Importance of Skin Care

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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/

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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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Can You Scratch My Leg?

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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/

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Marriage?

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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/

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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 Others See Me

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

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

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So, How Are You….Really?

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

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

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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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Guest Blog – Seeing Through the Woulds by Dan Digmann

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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.
 

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