Emotional Effects

The emotional toll being a caregiver has on the individual

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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Sometimes I Get Jealous

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

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

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Put Guilt Back in the Box

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

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

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The Challenges of Separation Anxiety

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I experienced separation anxiety as a child.  I didn’t like to leave home; rarely went to sleep-overs; and seriously considered my college choices based on how close they were to home so I “get” that feeling of longing to be close to someone you love and the slight edge of fear that comes when you are separated from them.  I learned more about the “other side” of separation anxiety when my children were little and I had to peel them off my body to leave them at day care so I could make it to work on time (which I rarely did because I had an aversion of losing skin during the peeling process). Now that my children are grown, I’ve learned to adapt to it again with my husband. It’s a little more difficult this time around.

When Lynn and I were first married, we were both self-sufficient, totally independent personalities. Both of us had managed alone as single parents for a while and both were used to doing our own problem solving so we didn’t “need” one another.  Sure we yelled the usual, “be careful,” comments as either was leaving the house but our thoughts quickly moved on to the next item on our agenda; there was no lingering anxiety over whether the other would return safely a few hours later. That all changed the day Lynn fell and was not able to get up on his own.  He had to lie in the blowing heat from the heat register waiting for me to return home from an hour and a half away after he had tried unsuccessfully to get up without calling me for an hour and a half himself. That three hour time frame shaped his psyche forever.  Where before he liked being alone and independent; after that day, he didn’t want me out of his sight or hearing.

After that day, if I needed something from the store, he tried to either convince me that we really didn’t need it or that it would be simpler to just order it by mail. I could see the fear in his eyes if I left the house and the, “be careful,” mantra took on new meaning for him.  He was afraid that if I left, I might never come back and if that happened, what would happen to him?  He was and is convinced that if I die or become unable to care for him that he will die, too. He knows that as much as our children or our siblings and parents might want to help us out, if I’m not around or able to provide his care, he will most likely have to go into an extended care facility and we do not have the resources for it to be a really nice one.  Therefore, he knows many of his personal needs and quirks (which are many) would go unsatisfied.  He knows that he would probably not get his special diet or his dietary supplements that are making such a difference in his well being.  He knows that he would not likely get the physical therapy adapted specifically to his needs.  He would more likely get a urinary track or kidney infection because the care facility would likely put in an indwelling urinary catheter.  He would not be able to use his peddler that keeps his legs and feet from hurting all the time.  He would not have access to his own personal computer to continue to write and feel productive.  He would become part of a group, exposed more often to viral and/or bacterial infections and probable skin breakdown.  He would likely not get showers but would instead get bed baths and his very existence would likely be compromised.  At the very minimum, his quality of life would decline significantly. Therefore, he panics when he thinks of losing me. Don’t get me wrong; he also loves me and would grieve my loss emotionally, but it’s all this other stuff that creates the panic.  He could survive the emotional loss but would not as likely be able to survive the physical changes.

Now, when I leave, we go through the twenty-questions of: Where are you going?  How long will you be gone?  Why is it necessary? Can’t someone else go instead? When will you be back? Have you checked the oil in the car? Is the car running okay? When will you be back?  Where is my phone? Is it charged? Can I reach it? When will you be back? …and on and on and on.

When the separation anxiety for became an issue, after I would peel him off my body emotionally and leave, the first thirty minutes would usually okay, but then I would get a text message…Did you make it okay?  When are you leaving?  Can you hurry up? Just checking to make sure you’re okay…..

To continue reading this post, click here: http://multiplesclerosis.net/living-with-ms/separation-anxiety/

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The Impact of Caregiving on the Caregiver

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s I was taking my morning dose of Advil (4 tablets rather than 2), I was curious about my future as a caregiver and what being a caregiver was doing to me personally.  So I thought I would look up to see if any research had been done on that topic. The Family Caregiver Alliance had a nice comprehensive summary of what research says on their website.  I caution you though, that if you are the receiver of care, this might make you feel guilty and if you are the caregiver, it might make you feel depressed. That is not my intent.  I think these facts are important to realize; however, so that appropriate decisions can be made for everyone’s future.

 Mental and Emotional Health Impact of Caregiving

  • Caregivers have higher levels of depression (40-70% have signs of clinical depression).
  • They often have coexisting anxiety disorders, substance abuse or dependence, or chronic health disease along with depression.
  • Caregivers have higher stress levels experiencing symptoms of frustration, anger, feeling drained, guilty or helpless.
  • They report feeling a loss of self identity, lower levels of self esteem, constant worry; feelings of uncertainty, less self-acceptance and feel less effective and in control of their own lives.
  • More than one-fifth (22%) are exhausted when they go to bed at night and feel they cannot handle all their caregiving responsibilities.
  • Caregivers who experience chronic stress may be at greater risk for cognitive decline including short-term memory, attention and verbal IQ.

Studies indicate that stressful caregiving situations may result in the caregiver participating more often in the use of alcohol or other substance abuse and caregivers often use prescription and psychotropic drugs more often than non-caregivers.  In addition, family caregivers are at greater risk for showing higher levels of hostility.  Over time as clinical depression increases and the person they are caring for shows greater impairment in mental and physical dependency, the caregiver is more likely to engage in harmful behavior toward their loved one if they themselves have become depress. Depressed caregivers also show a greater incident of suicide.

 Caregiving Impact on Physical Health

  • Eleven percent (11%) of caregivers say their own health has declined since taking on caregiving responsibilities.
  • Caregivers have a lower level of subjective well-being and physical health. In 2005, three-fifths (45%) of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared to one-third (24%) of non-caregivers.
  • Caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching), increased tendency to develop a serious illness, and have high levels of obesity and bodily pain.
  • Studies show that caregivers have a diminished immune response leading to frequent infection and increased risk of cancer (caregivers have a 23% higher level of stress hormones and 15% lower level of antibody response).  They also suffer from slower wound healing.
  • Ten percent report they are physically strained.
  • Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk for the development of cardiovascular syndromes such as high blood pressure and heart disease. They also are at greater risk for diabetes and higher levels of cholesterol.
  • Women who spend 9 or more hours per week caring for a disabled spouse increase their risk of health disease two-fold.

to continue reading this blog, go to http://multiplesclerosis.net/living-with-ms/impact-of-caregiving/

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Second-Hand MS

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Before Lynn was diagnosed with MS, my experience with the condition was from a distance.  I knew of a third cousin with it that family members talked about in sympathetic tones of doom.  I had a few encounters with colleagues who had MS and who shared some of their struggles with me when they asked for my assistance in obtaining a reasonable accommodation (I work in Human Resources) so they could perform their jobs successfully.  I remembered some information from my nursing training twenty-five years previously but it was mixed in there with the rest of the chapter on neurological conditions so I wasn’t sure if I was remembering symptoms of MS, Muscular Dystrophy,  Myasthenia Gravis, or something else. I knew enough to know that I needed to learn more.
Our first appointment with the neurologist was a little over-whelming.  We came home with a bag full of literature to pour through to decide which medication he might want to try, the option to participate in a study, and several pamphlets that basically were along the lines of, “so now you have MS…”  Lynn didn’t want to have anything to do with any of it.  He gave it to me; said, “tell me what you think,” and turned his back on the entire thing.  At that point, I believe he was too depressed to let anything in.  He wanted to be in denial and would not even let us say aloud that he had MS.  His philosophy was, “If you say you have it, you give it power over you and I’m not going to do that.” While I could understand where he was coming from, on the other hand, MY philosophy was, “knowledge is power,” so we immediately separated into our two corners to deal with the situation.
…So began my journey of having “second-hand” MS.
Continue reading at http://multiplesclerosis.net/living-with-ms/second-hand-ms/

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I Like Ours Better

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

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Living the Loss

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

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

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

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Is That Your Final Answer?

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

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All He Can Do Is Yell

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

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Cheesecake Makes it All Worthwhile

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English: Orthodox Christmas decoration Српски ...
Nativity  (Photo credit: Wikipedia)

I love Christmas.  I’m sure I’m not alone when I say it’s my favorite time of year.  I love the excitement, the beauty, and especially the meaning….but it IS a lot of work.
The reason I did not write a blog last week is that I was busy decorating for Christmas.  You see, I must have about 2o tubs of Christmas decorations.  I have stuff for the inside and stuff for the outside and although it takes a long time and my poor arthritic joints are crying the blues, I enjoy every minute of decorating. However, now it’s a bit more challenging to get all that decorating done and it takes twice as long as it used to do.
Once upon a time, I used to get all my decorating done the day after Thanksgiving. I would start early in the morning and keep at it till it was all done. Now, I always have the first three hours of any day devoted to Lynn’s morning routine of hygiene, toileting, and exercise. Then he rests in bed for 30-60 minutes depending on how restless his legs become.  During that time I eat breakfast and start cooking whatever is in low supply for his diet.  Then I get him up, connect him to his peddler, work to get him comfortable, and head back to the kitchen to finish cooking. Shortly after this he’s ready to eat breakfast.  All and all I usually start being able to decorate about 2-3:00 p.m.
Though he really does try not to bother me too often, on average I get a “call” from him every 45 minutes to an hour.  When I answer the call, I’m usually involved with him from 15-20 minutes depending on what he can think to ask me to do.  (He stores up his requests so that he won’t bother me as often).
On advantage to decorating now is that once Lynn goes to his room after his morning exercise, he does not venture out again till the next day. Therefore, I can spread out whatever I’m using as much as I need to do.  I don’t have to worry about him running over debris with his wheelchair or moving things to where I can’t find them.  All decisions related to how or what I decorate are totally mine.  His participation is very limited.
While Lynn has never been one to go all out and decorate like I do, he has always enjoyed the season’s festivities as well.  We both were involved in choir at church and so we had rehearsals and get-togethers we enjoyed as we prepared for the Christmas cantata.  There were family and friend get-togethers where we socialized with those we may not have seen all year.  And Lynn loved to cook.  He loved to invite family and friends over and provided them a feast.
Now all that has changed.
Lynn still wants to have family and friends over for get-togethers but now I do all the cooking (and I’m not a gourmet cook like he was; nor do I especially like the challenge of cooking for a group).  If we have people in, I have to split my time between making sure all the food is prepared and everything is available and running smoothly and taking care of Lynn’s needs.  I get to do very little socializing. I stay near Lynn all the time; watching for signs of fatigue or getting overheated.  We often have to excuse ourselves so he can bet cathed. He doesn’t like to be fed in front of others so I get him finger foods to nibble on and later I feed him something when he goes back to his room. All too often he feels miserable when others are having fun and that becomes very depressing when it happens so often.
But there is one bright spot for him that he always looks forward to.  Lynn always “cheats” on his diet at holidays and gets a big slice of cheesecake.  He loves cheesecake and he looks forward to it with excitement every holiday.  Somehow that slice of cheesecake seems to make it all worth while.
Even with all the challenges and disappointments, Christmas is a special time of joy, love, and sharing.  It’s more difficult than it used to be, true; but it has never lost that special place in our hearts. We still recognize the meaning of Christmas as a time of newness and birth. Christ’s arrival brought hope and promise of a better tomorrow. It was a time of celebration and love. It’s still that for us.  It’s a time of joy, remembering that there are possibilities of a better tomorrow in the year ahead. There is the love of family and friends which is renewed when we gather together.  There is the promise that thought we struggle with Lynn’s condition each day, there will come a time when we join Jesus in heaven and Lynn will walk again without any fatigue or stiffness and with lots of energy and strength.   It’s no wonder I like Christmas.

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How am I Thankful? Let Me Count the Ways

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I’m ashamed to say that I often use this blog to vent.  When I’m tired and discouraged, I find it therapeutic to talk it through on this blog knowing that there are those out there who have gone through the same things or are experiencing them now,  and that helps to know I am not alone.  When I receive comments of support and encouragement, it’s better than my own private therapy session. So I’m thankful for those who listen to me whine and share and to those who share with me as well.
I’m thankful for my husband.  Though providing for his care is overwhelming at times, I’m thankful that he is here for me to care for.  I’m thankful for his encouragement and his caring.  He’s always looking for ways to make my life easier and to provide his support.  I admit that I often don’t allow him to care for me because I’m so used to caring for him, but I appreciate his reaching out to me.
I appreciate his humor; he is often able to see the funny side of life.  I appreciate his faithfulness; he strives to be a faithful servant of our Lord, Jesus Christ, with whatever abilities he has.  I appreciate his knowledge; I’ve met few people who know more trivia than he does!  Plus he seems to know something about just about anything!
I’m thankful for Lynn’s abilities. His mind is very alert and as I said above, he’s very intelligent and useful.  Though he cannot physically do many things, he can tell me how to do them or guide me on how to get someone else to do them. Though he can’t write, he can speak and he can see so he uses software to write on his behalf and therefore, remains productive and has goals.  Though he has selective hearing, his ability to hear has not been touched by MS. When he puts his mind to it, he can clearly hear the same as I do. His essential organs still function to keep him alive and healthy though not untouched by medical limits.  Though he was a gourmet cook and can tell what’s in a dish by taste and though I tend to burn more than I like to admit, he always compliments what I make him and phrases my cooking to others.
I’m thankful for my job, my boss, my staff.  I love what I do and where I work.  I love the people I work with and for.  Their encouragement keeps me going and the work gives me purpose and reward…as well as enough income and benefits to provide Lynn with the care he needs and both of us with all our essentials and many of our wants.
I’m thankful for my children and their spouses and my awesome grandson who brings us so much joy with his love of life.  All of our children would drop whatever they are doing at a moment’s notice to come to our rescue if needed.  We KNOW we are loved by them and we know how fortunate we truly are to have been blessed with such good people in our lives.  Not only do we love them as our children but we love and respect who they are as individuals in this world.  We are truly blessed by their presence in our lives.
In the same way we are blessed by our extended family.  Lynn and I both have wonderful, caring, and supportive parents and siblings. Each side of our family gives us love in abundance and it’s so special to spend time with them when the opportunities come.
I’m thankful for our church family.  Our church family truly walk the walk of Jesus’ loving example.  Gethsemane Church of Christ is a powerful example of walking the faith; of giving and giving and giving through God’s love; of reaching out to show they care and of never forgetting that you exist.  The last we were able to go to church was in the fall of 2009.  I was rehearsing with the drama team for Christmas.  Lynn went into the hospital and they had to find a substitute for my part.  Though I was replaced in the role, they never replaced me or us in their hearts even though we’ve been “out of sight” and could have been “out of mind” for some time now.  They have never stopped caring and for that

Lynn and Eli enjoying a ride
Lynn and Eli enjoying a ride

we are truly thankful.
I am most of all truly thankful for the knowledge that I have a Savior who will forever be with me.  It’s amazing how He faithfully meets our needs.  He doesn’t remove the challenges; no Lynn still has MS and my arthritis is making it more difficult by the day to provide his care; but He gives us the resources we need just in time; every time.  Sometimes His answer to our cries is “wait” and sometimes it’s “no” but it’s always, “I’m right here; just hang on.”  He is our safety net and the light in the storm.  Always loving; always caring; always there…forever and ever.
For all these things and so many more, I am truly thankful and awesomely blessed.

How am I Thankful? Let Me Count the Ways Read More »

I Didn't Say That

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I’ve discovered that a lot of people who have never been caregivers just don’t get what it really means to be a caregiver and they make a lot of bad assumptions that sometimes cause us hurt.  I had an example of that this week.
On Friday, I received an email from my former sister-in-law.  She was “outraged” by something she believed I had endorsed and proceeded to accuse me of being thoughtless, uncaring, unappreciative, heartless, and a Christian who did not live what I believed.  She said some very hurtful things based on a rumor she had apparently heard from someone who was uninformed and absolutely wrong in what they shared.  Not only did she hurt me but she hurt my daughter who she was really trying to get to through me in the first place. It was an unprovoked attack and unfortunately, one that will certainly taint any future interactions I may have with her (though hopefully there will be no more).
She had heard that my daughter would not bring her child to visit his great-grandmother due to fear of MRSA (Methicillin Resistant Staph Aureus– a very difficult to treat infectious condition) in the rehab facility where she was staying.  Her assertion was that my daughter should bring her child for a visit regardless and since she was a stay-at-home mom, she certainly had the time to be able to visit. She conceded that she realized I had my hands full but she felt I should have insisted that my daughter visit instead of encouraging her to stay away.
I was stunned by her assumptions and accusations.  First off, I didn’t even know that my former mother-in-law was even in a rehab facility much less that she was asking to see Eli. Second, I couldn’t imagine that if Sarah (my daughter) knew about the request that she would refuse unless there was a very good reason. The truth of the matter was that she did know that her grandmother was in rehab and had in fact, already planned with her to take Eli there to visit when her husband was available to assist her with the toddler.  Eli is a special needs child.  In almost every way he’s as normal as any other 16-month old toddler; full of energy, into everything and wanting to put everything in his mouth still. However, he does not eat.  He refuses to drink almost anything and he eats only 2-3 tablespoons of food at any sitting. He does not take in enough food to survive on his own so he has a feeding tube.  Therefore, to take him anywhere means taking all the supplies for his tube feeding and replacement materials in case the tube comes out or gets dislodged.  On top of that, this tube that goes through his nose into his stomach, hangs out of his nose and goes down his back.  The tubing provides a direct passageway from whatever it touches outside his body to his stomach.  Therefore, letting this tube come in contact with MRSA is a very big deal. But the biggest insult was the assumption that since she stayed at home, it was no big deal to go for a visit.
That’s the part that people just do not understand.  Going out is a very big deal.  Though our challenges are different, my daughter and I both have the same issues when leaving home with our charges.  You have to pack supplies (for me its catheter supplies; for her it’s tube feeding), food (Lynn can’t eat out due to his special diet; Eli will only eat very specific things), and comfort items (clothing, water, medications, etc). Lynn fatigues very easily and his spasticity causes him a lot of discomfort if he can’t get on his peddlar that will rotate his legs and relieve the spasms.
I know people wonder why we don’t go anywhere but it’s so difficult to do so and it causes so much discomfort for us both that the enjoyment of a visit is not enough incentive to make up for the problems to address in getting there.  It’s not that we don’t care about other people or that we wouldn’t enjoy a visit but its high risk and often takes more time for recovery afterwards than the amount of time we were gone. So we don’t go.
Bottom line, I wish people would stop making assumptions about what they think is our reason for not participating or not doing what they think we should be doing.  Just like that saying goes, “don’t judge until you have walked a mile in that person’s shoes.”

I Didn't Say That Read More »

So This is What a Day of Freedom Feels Like

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My daughter approached me during our vacation and asked if I would be interested in speeding the day with her “escaping” from our caregiving responsibilities and just doing what we wanted to do.  She knew I usually worked on the weekends but thought that I should take a break and do something just for myself.  She also confessed that she, too, needed that break from caring for her special needs child as well. Falling into the category of “great minds thinking alike,”  I told her I had been thinking the same thing.  We both needed a “me” day so, of course, I said, “absolutely!”
Well, yesterday, she made it happen.  Her husband who works almost every weekend was off.  She checked with my step-son, and though he is often busy also with work activities on weekends, he said he, too, could be off. So her husband got baby duty, and my step-son got daddy-duty and my daughter and I got no duty, well mostly. As a caregiver you never completely get a day off unless you go out-of-town, alone.  We both had our morning activities to complete with our loved one before we could go but we got away from our homes by 11 which was remarkable.  Usually when Lynn and I have somewhere to go, our morning process is anything but smooth but not so yesterday.  All was smooth sailing and in fact, I finished up so early, I was even able to do some outside decorating changing my artificial flower display (I do NOT have a green thumb or time to water plants so it’s either fake or nothing) from spring/summer to fall colors.
On my way to her house to pick her up, I stopped and got some more flowers for outside and then strolled into her house to say, “hi,” to my grandson who was absolutely adorable even with nasal congestion from his cold. “Loving” him from a distance, I made contact with smiles and gestures (can’t get close enough to pick up his germs to take home to Lynn) and then I escaped with his Mom for a day of freedom.
We went out to lunch and had dessert, then we decided to go shopping since neither of us ever can just “shop” for ourselves.  It was awesome!  During our meal, neither of us had to stop to feed anyone else first while our food got cold or clean up spills or do anything other than concentrate on our food.  With shopping, we split up knowing that we didn’t need to “be together” to “be together” and each had the freedom to browse or buy as they saw fit.  With the use of cell phones we kept up with where each was in the store and we mutually did our own thing. It was relaxing and carefree. We enjoyed good conversation and both bought some things we wanted and needed and actually had time to try on before we bought it.
We lost track of time somewhat and suddenly realized it was getting to be the time we had said we would be back but in reality that wasn’t bad either because we had an estimated time for return rather than a deadline.
I really needed this day.  I know I had forgotten how it felt to be able to just take a day off from responsibilities. Sometimes I worry, as I know she does, about what we share with others about our feelings of isolation and being trapped at times.  It’s not that we don’t want to be where we are or do what we do.  We love the ones we care for and want to take care of them ourselves and don’t regret our decisions associated with making that commitment.  But sometimes it just gets overwhelming to do the same thing day in and day out and not see an end in sight.  I admit I get selfish a lot.  I look only at what meeting his needs does to my agenda and don’t consider the fact that he wouldn’t ask if he could do it himself.  I wish I had the patience and compassion I was able to display in the early days of caregiving before I started feeling burned out but I’m getting tired…physically tired, mentally tired, emotionally tired.  However, having a day like yesterday helps me to cope with that fatigue and helps to recharge my battery.
Thanks to my stepson and son-in-law for sacrificing their day off to let us have that time.  Bless you both for caring and loving us enough to see that we needed that time.  Thanks to all my children, their spouses, my parents and in-laws, brothers, sisters, uncles and aunts, friends and readers who offer support, encouragement, and hands-on help.  I don’t know how I would make it through the day in and day out challenges of our life without you.  God has truly blessed me in this life with each of you.

So This is What a Day of Freedom Feels Like Read More »

When Is This Going to go Away?

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

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Radical Mobility Lets Us Down Yet Again

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Within a few days, we’ll be getting ready to head out to the beach. Lynn loves the beach.  His favorite past-time has always been to surf fish.  Since he became restricted to a wheelchair, this has not been possible.  So in hopes of being able to participate in that joyful experience he purchased a very expensive 4-wheel drive wheelchair from Radical Mobility in 2009.  Unfortunately, he has never been able to use it (see my post about this from March 2013 for details  http://mscaregiverdonna.wordpress.com/2013/03/01/thinking-of-buying-4wd-wheelchair-dont-buy-from-radical-mobility/).
When it first arrived, he was too sick but by the following summer, he was well enough to take it with us to the beach.  However, once there, it would not carry him up the ramp into the van and it would not drive on sand; both essential functions if you want to go to the water’s edge.
When we returned home, he started attempting to contact Radical Mobility to find out about having it fixed. Per their instructions we sent them the parts that were defective in April 2012.  To date, we have not gotten them back.  When I posted that blog, Radical Mobility commented to it:

Albert says:

Dear Mrs Steigleder,

We are extremely sorry that you did not receive the controls that was sent, we should have checked back with you to make sure everything was in order. We did receive email from our new branch in Durban but assumed you have received the package. I have forwarded your mail to our CEO, (martin@martinbrown.co.za) who is going to be livid and heads are going to fly.
He has had some heath issues this past year but is recovering well. We will send you a new control, cable and power module on Monday 4th when the factory opens at 08h00. It will be sent with TNT, UPS or Fed ex so we can assure its arrival this time, only thing we will need is picture of the two motor plugs. They are the plugs with the red, black and two white wires in the centre, reason being that they can get the polarity correct on the programming.

Once again we apologise and hope to get Lynn fishing soon, please join our blog, Facebook page, Twitter, Flickr as we don’t see you at all on those sites.
You can mail me direct at workshop@radicalmobility.com, lets get these parts to you soonest and Lynn out fishing again.

Kind Regards

————————–
Albert Seko
Operations Manager

Radical Holdings (Pty) Ltd
T/A Radical Mobility

I was so excited to think that our waiting was over and they would promptly correct the problem.  I trusted them at their word to send back out parts.  To date, we still don’t have the parts.  We were told weeks ago it had been shipped and we would get the tracking numbers.  Though we have emailed multiple times and requested the tracking numbers, we have not received them.
In my frustration, I threatened to write bad reviews anywhere I saw them advertised.  Their response was to threaten to take me to court.  I don’t know the laws in South Africa but I would assume that a company is held to their verbal commitments to stand by their product so as long as I comment on what we have experienced, I don’t think I have a legal concern.
To be honest though, the legal issue is not my main concern. My concern is that once again we’re heading to the beach and Lynn will be left out of much of the fun because he can’t get out on the beach. It’s so very depressing to be so close yet so far away. It’s bad enough to feel bad every day, to not be able to do anything for yourself, to have to watch others have fun while you sit on the sidelines; but what is worse is that they PROMISED we would have the parts back easily in time for him to have the wheelchair working this year. They lied.  We built hope around that lie and now, though he’s not saying it, I know Lynn is dreading going.  And because he can’t participate, neither will I for most of the activities.  I’ll need to stay close by in case he needs anything.  Our kids will stay with him some but they want to go out too.  They stay usually in one room while he sits in another watching TV or typing on his book.  He gets very lonely because he has limited access to all the fun and to being part of the group.  Some of that is his own fault because he doesn’t want to watch what they do and won’t do so just to be in the group  (but on the other hand, if he’s miserable, watching a program you don’t like doesn’t help either.)
We’re trying to stay positive.  I hear the fire department there might have manual wheelchairs we can use on the beach so hopefully we can rent one for a few days.  But it’s a shame we have to pay money to rent a chair for the beach when we have one we bought for that purpose sitting right here in our living room.
Lynn doesn’t want to take legal action, but I see no other choice to bring this to resolution; so does anyone know what type of lawyer I need to deal with a company in South Africa who breached their contract? If so, please let me know.

Radical Mobility Lets Us Down Yet Again Read More »

Fear of the Future

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One of the ways we cope with Lynn’s condition is to deal with what we have “today” and not look too far ahead.  That’s especially true for Lynn; not as much for me.  My personal make-up requires that I have a sense of control about my life so I ALWAYS look ahead and plan for what’s coming up. I hate surprises and am not an impulsive person, at all! While that works for me, Lynn doesn’t want to think about the future.  He might plan for projects that he wants to do but he doesn’t want to really look at the future.  He’s almost, but not quite, the type to bury his head in the sand.  That’s especially true when it comes to MS.
Ever since he was diagnosed with multiple sclerosis, he has not wanted to learn anything more than he needed to know to manage his symptoms for that day. I was on-line reading all I could find the day we got home from the doctor’s office with the diagnosis. Not Lynn; he didn’t want to know anything about it and would ask me to close the screen if he came into the room.  Part of that, of course, was the fact that he had “lived” MS with his father who had died in his 40’s after a very progressive battle that put him quickly into a wheelchair and then a bed where he stayed till he died of complications.  It’s Lynn’s philosophy that if you are told about negative things that “could” happen, you’re more likely to subconsciously progress in that direction.  I can see his point of view on that so I try not to bring up symptoms he does not currently have and I don’t talk about disease progression.  When he talks about being able to stand independently or do this or that (things he has not done in over two years) then I mutter encouraging words, try to help him with his physical therapy toward that goal, and try to support his mental hope. Then in private, I continue to research what might be causing any new symptoms I might see and look for disease modifying therapies or devices to assist in his daily care.  I also admit that I DO think a lot about future care even though I try not to.
Currently, I am very fortunate that I can work from home and I have his family who comes in twice a week to help.  His mom and sister come on Mondays and his son comes on Wednesdays.  They are a God-send because on Mondays I have a lot of things scheduled that take time and it helps to have Lynn’s needs being met so I can focus on those things.  On Wednesdays I usually go into my office at work for any face-to-face meetings I might need to attend and to just remind people that I actually work there. However, I know at any point that assistance may no longer be available.  His son could get a job that required him to physically be at the office very day (he currently works from home and just works here on those Wednesdays).  His mom could get sick or his sister change jobs and they would no longer be available either.  My daughter used to help out but now she is a full-time caregiver for her son who has special needs and she can’t really manage his care and Lynn’s except for short periods; certainly not on a regular basis. I had a friend who used to come regularly to stay with him a few hours each Thursday but her personal demands have changed and she can rarely come any more.  Therefore, as time goes by my options for support have had a way of dwindling down.  That’s pretty common for long term conditions. People can help temporarily but long term is another matter.  So, I know that at some point, I’ll have to figure out how to pay for someone to come to my home or come up with another solution.
It’s discouraging the way resources are made available to those who do not work but for those of us who try to pay our own way, we can’t get any help.  For me to get assistance, I would need to quit my job, go on welfare, and maybe declare bankruptcy. I currently spend a lot of money on supplements that have really improved Lynn’s health but which are incredibly expensive!  I’m spending $3-4oo easily each month on supplements. Then there’s the grass-fed meats which are more expensive, medication co-pays, assistive devices that we find useful but which are not covered by insurance, and so many other expenses that to think about trying to come up with money to pay someone to stay here while I go into work, is mind-blowing… so I just don’t think about it yet.  I’ll deal with it when I have to since nothing is going to change between now and then…or could it?
A caregiver support group formed at my church in April.  We meet once of month.  In the group, we have one person whose spouse has a heart condition that limits his functioning, another whose spouse had a brain injury who needs significant support, one whose spouse has Alzheimer’s or something similar and three who had parents with cognitive or physical impairments needing care.  Since April, two have lost their loved ones and another has had a series of heart attacks which are limiting his life expectancy to months instead of years. As I told Lynn of each of these occurrences, I could see him becoming more and more concerned.
Our last meeting of the group was held at a rehab facility where two of the group had recently placed loved ones.  When I told Lynn about the one going into rehab and the issues associated with trying to take him home (his house is not handicap accessible with multiple stairs to get into the house and significant restrictions inside for using wheelchairs, lifts, etc.), I could tell it really bothered him. Later that day he shared that he was scared.  He’s so afraid that one day he will have to go into a nursing home.  He knows that even a well-run and high quality nursing home would mean he would get limited attention and would often be uncomfortable (he has A LOT of comfort needs.  It’s very difficult for him to feel comfortable and I’m forever adjusting this, moving that, changing whatever).  He also knows that he would feel isolated from family and friends because they would not be around all the time like I am now. He sees this happening to someone he knew who was able-bodied long after Lynn was unable to care for himself and it brings home to him how quickly things can change.
I assured him that as long as I’m able, he will never be put in a nursing home and that even if something happened to me, I’m sure the kids would take him in and work together to care for him. The reality is that I’m sure they would want to do just that, but could they?  They have jobs; they need to work.  They could not get financial assistance to care for him in their homes; just like I can’t, but they could get assistance if he was put in a nursing home.  How crazy is that?  It’s much more expensive to pay for inpatient care than to have a caregiver come to the home for a few hours but the more expensive one is an option, and the money-saving one is not.  Short-sighted? I would say so.
At any rate, I think my assurances helped him not feel as insecure.  He knows I’m overwhelmed with all I do and he knows my physical condition is deteriorating due to the wear and tear on my body from lifting and lack of sleep so he knows that I may mentally be willing but physically may not be able to do so.
So, what was my advise to him?  The same as always and the only thing that’s sure.  Just trust in God to take care of us when we need Him to do so.  He hasn’t failed us yet and He won’t fail us then.  I don’t know what the future holds for us.  I know Lynn’s likely to get worse instead of better.  I know I’m likely to have problems that interfere in my ability to care for him.  Can I do anything about that now?  No.  So I’m going to move forward in the manner I’ve used to cope so far…I’ll think about that later; not now.  For now, today, I have work to do.  He needs to be fed. He’s calling me to cath him.  I need to do some “work” work and I have some meals to prepare.  That’s enough for today.

Fear of the Future Read More »

Divine Intervention?

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I’m supposed to be at my eye appointment right now.  Since I’m writing a blog instead, you are correct in assuming, I didn’t make it there today. I really wanted to go get my eyes checked but even more, I really wanted new glasses.  I wear progressive lens in very inexpensive frames and for the past two years I have struggled with them constantly slipping down my nose, irritating the bridge of my nose where they sit, and not being able to see anyone I was talking to who stood within two feet of me because I would have to view them through the wrong “progressive” section of my lens.  I had it all arranged…Lynn’s aunt and uncle were coming early so I could leave on time and I had planned in my mind how I would get my exam, order my frames and pick up things I needed at the store, but as they say….the best made plans of mice and men…

I got to bed at 2:30 a.m. last night which is fairly typical for me but not what I wanted to do since I had to get up at 6:30 a.m after a night of every two-hour catheterizations. So we agreed that we would get up at 7 and cut a few corners in getting ready.  I set my alarm and went to bed.  Got up at 4:30, did my thing, went back to bed.  Got up at 6 for another catheter experience and back to bed for an hour.  Next, I’m being awakened at 8 a.m.  Apparently, my alarm did not go off and Lynn had just woke up and needed to be cathed.  I checked but there was no apparent reason that the alarm did not work.  We figured out how to cut corners from our normal 3 hour morning routine to be able to be ready in 1 1/2 hours. We started our scramble doing multiple things at one time to get in all we could.  Our plan could work, PROVIDED his bathroom time went smoothly.

Well, you guessed it….his bowel regiment didn’t work today. That’s not unusual for when we have to go somewhere. Maybe it’s a subconscious fear that it won’t go smoothly that causes his nerves and muscles not to work for success but it’s often the case. Of course today was typical of that.  Two suppositories and a pediatric enema later and we have very return on our investment.  Ugh…I can’t leave him home with folks who cannot take him to the bathroom in the event his GI system decides to become cooperative later so I call and cancel my appointment.  I’ll reschedule eventually but I only have Saturday “coverage” every other week and the next time is my Caregiver Support group so it could be a month before I could reschedule.  Oh, well, what’s another month when I’ve been dealing with these irritating glasses two years anyway….

Actually though, I’m at peace with it.  Normally I get very upset when my plans get sabotaged by uncooperative body parts but for some reason today, it did not upset me at all.  I calmly told Lynn I would cancel my appointment and reschedule and never thought another thing about it.  Why? I never act that way (as I have shared before, when my plans get changed, I get frustrated and then my evil twin comes out) but today I was not upset at all. The way I figure it, God was telling me I should not go today.

I believe there are no coincidences in life.  I think God’s hand is in everything.  Not that he makes things happen, but that he is aware of and working through whatever happens. I do not believe that God does things TO us but that he works within whatever happens to and around us either for our good and that of someone else.  I do not believe he causes fires or earthquakes or terrorist attacks to get even with us but that He allows those bad things to happen and through those struggles we learn perseverance or we are humbled into realizing we need others or for some other reason unknown to us but for the good of someone or something.

Sometimes I wonder, “why us,” about Lynn’s condition. At the time he was struck down by MS, he and I both were extremely involved in our church; we were there almost every day of the week either in choir, drama, praise band, worship, or service.  We were actively serving God and reaching out to share His word but now we can’t even go to church.  We hardly even see anyone.  We went from serving others to being served, and served, and served…and it was a hard transition to make.

I’ve had people from church who come help us out say what a blessing it is to them to be able to do so and having helped others, I know that is true, but being on the receiving end is hard at first.  “It’s more blessed to give than to receive,” is true.  Being the “receiver” was initially embarrassing and humbling but eventually, I learned to accept that we were God’s receptacle for the service of others and to be thankful we had that role.  We have been blessed over and over again by His interventions using others on our behalf.

So why am I not upset today about not getting to my appointment?  Because for some reason, and I may never know why, I was not supposed to go to that appointment today.  Maybe I avoided an accident, maybe it was His way of preventing me from causing an accident due to lack of sleep, maybe someone else needed my appointment more than I did, or maybe it was so I could share my thoughts today with someone who needed to hear them.  I’ll never know, but I do know this….God did not want me to go to that appointment.  My alarm didn’t go off, I overslept, and Lynn’s bowel program all worked together to keep me here–so that’s that.  Not sure what the rest of today will hold but for now, I’m at peace.

Hope you have a good day as well.

Divine Intervention? Read More »

The Best Laid Plans…Oh, Forget It

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By far, one of the greatest frustrations I have as a caregiver is that I have no control over what I want to do and when I want to do it. I am sitting here so frustrated at this moment that I can hardly think straight.
Today is July 4, my day off.  However, I actually planned to work today to catch up on some projects at work that I REALLY need to do.  I had my plans all straight but here it is 4 pm and I have not done anything I planned to do.  I could cry.
I took some “me” time last night from midnight to 2 a.m. to watch a movie I rented from Blockbluster (been trying for a week to even be able to put it in the DVD player).  BIG MISTAKE.  It never pays to take “me” time.  I always regret it later.  So anyway, I took the time to watch a movie; afterwards waking Lynn for his dinner (yeah, I know we have weird schedules), feeding him, doing his night routine and then mine, so I got to bed at 3:30 a.m.  Up again at 5, 7, and 9 (Lynn thinking it was 10.  He seems to think he’s my personal alarm clock and heaven forbid I just be allowed to sleep till I wake up on a day off!) to cath him. I go back to bed to sleep till 10 so I get 5 3/4 hours of sleep (15 min per cath event).  Getting up at 10, of course, makes me  late getting started but I figure, we have nothing special we have to do today, I’ll easily get started by 1 with what I need to do.
Then the day precedes to be shot to h___.  I do the morning prep work while he does his vocal exercises.  I take him to the bathroom and it doesn’t go as expected.  He has to use suppositories due to limited muscle strength and it didn’t “come back” like it should.  That means disaster.  Now we’re waiting in the bathroom and he decides he needs to pee (why couldn’t he have gone before we go the bathroom–yeah that doesn’t make sense to you unless you know that the cath supplies are in the bedroom not the bathroom). I finish that, get him cleaned up and then he announces he wants to sit in his manual wheelchair (he’s trying to toughen up his butt in hopes he can tolerate the cushion in that chair and maybe go to church again one day).  That means rearranging various pieces of equipment to get the manual chair out of of that room and putting him on it instead of the power chair.  That done, we go to the kitchen for his morning pills.
In the kitchen he takes his meds and decides he wants me to put weights on his wrist to work his arms.  That done, I turn to begin preparing my meal….no wait…. he needs me to help him with his arm exercises.  I do that, then take off the weights, and begin to get ready to take him back to his room. No wait….”I want to do pull downs in the weight room,” he announces.
I again go to the weight room (which I had just rearranged to get the manual wheelchair out), rearrange it again to get it ready for him and back I go to the kitchen to get him.  I roll him to the weight room and help him do the pull-down work out and then take him to the bedroom to set up the massager for his feet. I then go to start my breakfast (two hours after I get up) and eat.  While eating I prepare mushrooms for roasting, and cook spinach for his diet; also make his soup for lunch.  As I finish, I hear, “Sweetie, come back. I need to go to the bathroom again.”  Large GROAN.
With sagging heart, I go and take him back to the bathroom (remember, I only do manual lifts so I’m physically lifting him in and out of these wheelchairs and onto the toilet).  He “goes” and then says he might as well lie down awhile so I roll him to his bed.  “Oh, yeah, I want to do  push-ups.” Seriously???
I get out the PVC work-out pipes that I insert under his mattress (out of the weight room, of course) and help him do push-ups.  Then I settle him down for a nap (put his pants on him again, cath him, put his boots on him so his feet don’t cramp, get the TV set for viewing, wash his face, and straighten up the room.)
While he’s down for a nap, I just finish cooking what I put on while eating, washing the dishes and doing a load of laundry when I hear, “I’m ready to get up.”  I get him re-dressed, hook him up to his peddlar,  hear “I’m hungry,” so I feed him breakfast and as I finish feeding him, hear, “I need to go back to the bathroom again.” Major sigh…..
Back to the bathroom, back to bed, redress, get him back up, reconnect him to his peddlar, make him tea, cath again, and do a few adjustments, and now it’s 4 pm.  Six hours after I get up, I’m finally finished with his morning activities and I’m ready to “start” my day.
I give up! I think I’ll just take the take “off.”  After all, it will be time to cath him again in thirty minutes (true enough, he called to be cathed again at precisely 4:36) and he’ll want a snack 30 minutes after than, and then more tea, followed by another cath…..
So much for my plans.
I know none of the above was unnecessary for his comfort and well-being.  I know that he hates the fact that he had to disrupt my day so much (and I’m sure he hated hearing my complaining about it even more).  But that doesn’t change the fact that it’s depressing to have so little control over my plans. I’m tired of being unable to plan anything and I’m tired of disappointments but most of all I’m tired of the fact that I haven’t found a way to not let it get to me.
I really wish it didn’t. I wish I could laugh it off and just roll with the punches but that “funny bone” just ain’t working right now.  Could be lack of sleep; could be the fact my arthritis is really bugging me; or it could be….I’m just feeling sorry for myself and making it all about me.  It’s not all about me and it’s not all about him.  It’s all about us.  We’re in this together and I need to keep my perspective on it.  In the scheme of my life right now, not being able to work on writing policies for my job is not a big deal. Being able to make him comfortable and take care of his needs IS a big deal. I just have to refocus and get my perspectives right.
Hmmmm….I think I might just have the thing to do that…I think I’ll go make a slushy out of watermelon….yeah, that will make it all better.
Happy 4th of July.

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See Me Through His Eyes

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I’m ashamed of how much I complain to Lynn about the things he asks me to do.  If he calls me to cath him and it’s only been 40 minutes I’ll say something like, “you’ve got to be kidding!  You couldn’t possibly need to pee again this soon.”  Today I was gripping because he now eats four small meals a day rather than three times a day. That’s one extra 30-minute period for me to prepare his meal and feed him.  When he wanted to exercise, I sigh and say, “Guess I won’t be making that phone call I need to return.”  I say things all the time to make him feel guilty for asking for my help!  I don’t see how he puts up with me or why he still calls me his sweetie.
Thinking about how I must make him feel, I envision what his world must be like with me in it.  I want to share that with you and hopefully remember it myself the next time I start whining and complaining.
————————–(this is how I imagine Lynn thinking to himself)———————–
I wish I could go back to sleep. It’s 7:30 a.m.  Is Donna getting up at 8 today or 9?  I really need to pee but I had her up twice last night and I know she needs to get some sleep.  Maybe I can wait…
Did I hear her? “Donna, are you awake?  I hate to wake you up but I really need to go.”
Donna: “I’m awake now.  Can’t you hold off a little while longer?  I’ve only been able to get five hours tonight.”
Lynn: “I’m sorry but I really do need to go. I’m so full, I don’t think I can hold it much longer.” I hope this is not a false alarm.  I really don’t want her to be miserable all day and I hate to interrupt her sleep like this but I feel about to bust. 
Donna: “Okay,” (heavy sign) “I’ll get up.”

(an hour later after he has done his vocal exercises)

Lynn:  “Do you have time to help me exercise?”

Donna: “What do you want to do?  My hands are really hurting this morning and so is my back.”

Lynn:  “Can you help me with the Tram?”

Donna:  “I don’t know.  I need to check emails and get things ready for us to go to the chiropractor today.  I really need to get back to xxxx.  Maybe if you don’t ask me to do anything else afterwards, I can fit it in.”

Lynn:  “Maybe I should wait and do it tomorrow.”

Donna: “No, you want to do it today so we’ll do it today. (heavy sigh)  Just let me figure out how to fit it in.”

Lynn:  I don’t want to bother her but it’s been a week since I was up on the Tram and if I let it go much longer, I’ll stall my progress. I’ll try to do it quickly so I don’t bother her any longer than necessary.  “Thanks.  I really appreciate it and I’ll try to keep it quick.”

As I rush out to get breakfast, Lynn thinks, I hate being such a burden.  I know she’s doing the best she can and she doesn’t have enough time like it is.  I know I shouldn’t add to her work but if I don’t exercise, I can’t get my strength back and I’ll never be able to help her around here.  I want to be her husband again.  I want to take care of her and do the yard work.  I want to fix the front porch rail and get the windshield wipers changed for her on the truck. I want to take her places with me driving so she can sleep in the car or read like she used to do. I want to earn a real living; not just get a few dollars from disability.  I want to take the load off her shoulders.  I’m her husband.  I want her to see me that way again and not have her think of me as one of her children to care for or worse yet, a job she has to do.  I’m afraid she will grow to resent me and my demands on her time, but I get so cold if I don’t drink hot tea and then I have to pee so often when I do. 

“Donna, can I have some tea?”

D___ I dropped the remote. I hate this show.  I’ll type instead.  Let me send another query letter out for an agent. …I’ve written that paragraph four times now and I’ve lost it each time.  My computer is acting up. Maybe she can help me  figure out the solution.  I’ll ask her when she comes back… but I know she doesn’t have time.  Maybe I can get her to help for just a minute though.  Maybe she won’t be as bothered with me if I get her to do everything while she’s here and not have to call her back anymore…

—————————————————————————————————–

In my mind, I imagine those types of thoughts go through his head every day.  I know he hates to be a burden. I know he doesn’t feel like a man and that he’s eager to get his book to sell, not for the glory, but so he can bring money into our home to help relieve some of my struggles. Lynn is very thankful for what I do for him.  He gives me a lot of praise and signs of appreciation.  I’m very fortunate, he is so thoughtful and doesn’t make my caregiving experience so much harder than it already is. I’m a lucky woman; so why am I so critical and complain so much?

Lord, forgive me. Help me to see through his eyes, to feel through his skin, to hear with his ears, to feel his pain and frustration.  Help me to see the man I married and not a patient demanding my attention.  Help me to show compassion and love, respect and gratitude, encouragement and hope, and most of all faith in You that you will see us both through the good and the bad times.

Amen

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Caregiver or Mom?

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

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

Caregiver or Mom? Read More »

Just Sharing

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Usually I have a theme for my posts, but not so today.  Instead, I just want to share what’s going on in my life because life doesn’t stop for a caregiver; it just gets busier and busier.
Lynn:  He has started to feel better from taking his Rebif. Hallaluyah!  It only took a year.  Though he still has fatigue, it’s much better; except for this past week. For some reason when pollen comes out each spring, it really hits him hard.  He needs about 25 squirts of saline mixed with nose spray every time I enter his room and sometimes twice while I’m there.  He has felt very tired all week and rather depressed. The depression leads to impatience and irritability so my tolerance has been stretched as well.  He seemed better today so I hope he’s getting adjusted.
Eli 146My grandson, Eli:  Poor little guy has been labeled with “failure to thrive.”  He’s 10 months old and the size of a five month old.  He has not gained height or weight in several months. He will only drink 2-3 ounces of breast milk at a time and if he eats solid food, he breaks out in a rash.  The GI specialist says his tummy probably has the same type of rash inside as he skin outside and so it hurts him to eat. He’s on an formula that has been added to the breast milk and it smells bad and must taste bad because he pushes it away as soon as he tastes it.  We’re trying to get him to drink at least as much as before adding the supplement but he’s really fighting it. If this is not successful, he may need a feeding tube.  It’s very frustrating and anxiety producing for his caregivers but the little guy is just as happy and loving as he can be! His smile is infectious and he’s a joy to be around. 
His mom, my daughter:  She bent over a chair Monday and broke two ribs!  She also broke her ribs bathing Eli when he was about two months old so now we have the added concern of why are her bones breaking so easily?  Bones don’t usually break unless an unusal stress or intense pressure is applied. She just leaned over the chair.  So, she’s having all sorts of lab work done plus a full body bone scan and a bone density test to figure out what’s wrong.  Though they do not suspect cancer, bone tumors or bone infection can be the cause of such breaks.
While she goes to the doctor, I keep Eli and Lynn.  A typical hour from such a day:
     Lynn:  “Sweetie, I need to pee.” (I pick up the baby, settle him into something he can’t get out of, cath Lynn and deal with whatever else he needs.  Meanwhile, baby gets fussy.)
     Eli:”Mamamamamam, (squeal), dadadadad, (whine)” hands reaching up, whining getting worse; he’s rubbing his eyes and needs his bottle. (I settle Lynn, go heat up the bottle, with Eli crawling around my legs begging for his milk that he wants THIS MINUTE)
     I rock Eli to get him sleepy so he won’t fight eating.  As his eyes start to shut, I remove his pacifier and stick in the bottle. Success, he eats 2 ounces.  I try it again in a few minutes- another ounce-and that’s all he will take.  I finish rocking him to sleep (he’s a very light sleeper; if you move he wakes up and is ready to play) I start to fall asleep (I’ve only slept six hours so I’m always tired) and after about 20 minutes, I hear:
     Lynn:  “Sweetie, I need to pee”  and we start over.
      I never ends…
My son:  He’s getting married on Friday at our house and having the reception on Saturday at our house so Lynn can attend and have a place to rest. So my house is covered in flowers and wedding preparations and every spare minute I’m busy working on something related to the wedding.  I’m taking next week off from work to get it all done because I’m WAY behind. I don’t even have a dress yet!  But I’m very excited and happy for them both.  It’s been a lot of fun helping them put it all together.
Me:  I’m seeing a surgeon on Monday.  My right thumb joint needs to be replaced.  I can’t really put it off any longer.  It’s painful all the time, I can’t open anything with it, I can’t grasp anything so I need to get it done BUT, what am I going to do with Lynn? I’ll need some respite care of course but I won’t know till I see the surgeon how long I’ll be unable to use my hand.  Ugh….I dread dealing with his needs more than I dread surgery for myself.  I don’t know how I’ll afford the continuous care but I’ll need to see if we can get help for 24 hours because I can’t cath him with one hand nor can I transfer him into or out of bed with one hand.  Wish me luck on this one.  May take several weeks to work this out.
My work:  busy as usual, still needing me when I’m needed at home. 
So as a caregiver, I find there are many ways I need to provide care and to many people. Lynn and my daughter for their medical needs. Eli for medical and baby care.  My son for sending him off into the world with his own family.  And myself. 
Who takes care of me?  God.  He provides me with what I need, when I need it and thank goodness for it.  
PS:  All prayers are welcome!

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What is a Caregiver?

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I’ve had the opportunity this week to read a few blogs from other caregivers and last week to attend a caregiver support group.  In hearing the stories of other caregivers, I started thinking about what it meant to be a caregiver.  There’s certainly the obvious answer, “to give care to someone periodically or full-time,” but there is more to the story; especially if you’re a full-time caregiver to someone who is totally dependent on you due to a mental or physical condition.  Here’s my take on it….
…first, there’s the physical commitment which takes on many faces…

  • If the person cannot “do for himself” then you become his muscles and nerves; not just his hands and feet. It is through your muscles, and therefore, your strength, that he moves to change positions, to find comfort, to alleviate pain, to participate in distractions, to have his needs of daily living met, to experience the joys and challenges of life as a participant and not as a spectator. It is through your nerve endings that his body is protected from water that is too hot, sharp objects that might damage skin, body temperatures that indicate infection, bandages that are too tight, food that is too cold to be enjoyable, and other potential discomforts or enjoyments that he is beyond the ability to change but must rely upon someone to care enough to notice them and adjust as necessary for his comfort and enjoyment.
  • The flip side of using those muscles and nerves to provide for care is that you have more aches and pains than you might otherwise have. Your muscles are often strained and in spasm from lifting a body that cannot provide any support for itself.  It’s true what they say about dead weight being heavier.  A limb that cannot be lifted by the owner is heavier to lift than one that the owner can provide assistance.  Sure it weighs the same but the effort required makes it heavier.  So you get up in the morning with sore muscles and periodic spasms.  A good exercise routine would probably help that but finding the time to commit to that is a challenge (especially if you’re like me and hate to exercise!)
  • Besides the daily physical requirement, there is also the fact that you commit to their care even when you need care yourself!  Gone are the days that you could lie in bed and rest if you had a cold or migraine.  Gone are the days that you can have a GI bug and just stay in the bathroom till you are well. You have to figure out how to get help for the person you’re caring for either in-between bouts of being ill or who to call to come rescue you both. Personally, I’m probably going to have surgery soon and will have to find full-time care for Lynn before I do so.  That’s bothers me more than the thought of the surgery!

 ….Then there’s the emotional commitment or impact….Though the physical aspect is draining, the emotional impact may be even more difficult to handle.

  • Again, there’s the emotional contributions of caregiving toward the “caree.”  Part of your role includes observing the emotional thermostat of the individual. Are they depressed?  Are they becoming angry and difficult to control?  Maybe they are afraid about the future or that you will decide not to look after them anymore so they cling to you or try to “guilt” you into staying.  Someone who is chronically ill often goes through the emotional stages similar to someone dying, “denial, bargaining, anger, depression, acceptance” with a lot of going back and forth between the stages as they encounter new issues.  Guess who has to help them through those stages?  The caregiver of course,who is also likely to be going through the same stages themselves.
  • The caregiver’s emotional response is often very difficult due to self-imposed guilt over having some of the emotions we have.  Too often we think that we are “bad” to be angry or resentful about being “stuck” in a situation. We don’t want to give ourselves permission to experience the negative feelings we have.  What happens though if you don’t allow yourself to express them is that they come out anyway in response to the one being cared for or in destructive ways to yourself.  I tend to overeat if I’m depressed and I become overly negative and critical toward Lynn. It’s important to acknowledge the feelings and allow them to be expressed but in a healthy way rather than in a destructive way.  Support groups and therapy help a lot with that as well as writing a blog : )
  • You also experience the effect of constantly having that person on your mind. You have to plan ahead for meeting their needs…do they have enough supplies, when is their medication refill due, are their bills being paid on time, are their clothes okay, are their meals being prepared correctly, who is going to cover for you when you can’t come by, who will take over if something happens to you….etc. etc. etc.  

…Besides emotional and physical commitments, you also become the other person’s “window to the world.”

  • You help them remember what day it is and to celebrate the special occasions on the calendar.  Often every day is just like the last so it’s difficult for them to keep straight the season or the holiday being experienced.
  • They may not read the news or watch it on TV so helping them keep up with current events may be a way to keep them connected (personally, I do not read them either so we could have had an alien invasion and I wouldn’t know about it till someone stopped by and told me about it.)
  • You are the one who takes them out into the real world.  I admire Patrick, who writes Caregivingly Yours.  He takes his wife Patti, who has MS and is fully dependent, on multiple excursions per week.  He keeps her stimulated with new places and entertains her with new advantages to help her keep involved in life, even though her MS Dementia would make it easy for him to say they did when they didn’t.  That’s try commitment to doing what’s good for someone when it would be so easy to let it go.

Then in addition to being a “caregiver” you add MS to the picture.  I know all chronic illnesses have their special challenges but since I deal with MS, I’ll describe that impact.   MS is unpredictable.  Since any nerve pathway could be affected by the myelin degeneration, ANYTHING could go wrong. What is working fine today might not work at all tomorrow.  Someone who is functioning well in the morning may not have the ability to do anything for themselves by afternoon. A simple cold can put them in bed for a month or more and lead to new exacerbations that have long-term limitations. A period of forgetfulness might mean fatigue or the beginnings of MS dementia.  And while all these symptoms create challenges, for the most part they do not shorten life expectancy so the accumulation of new challenges goes on and on and what’s lost is rarely regained.
There is no doubt that being a caregiver is a sacrifice of one’s self.  For me, I often feel like I am an extension of Lynn and at times, even lose myself in him so that I no longer exist.  When that starts to happen I have to work to separate myself from that place; otherwise, depression sets in and I am less effective at anything. 
Overall, I feel blessed to be a caregiver.  I receive a lot of rewards from being one.  It’s the hardest job I’ve ever had to do but it’s also the most rewarding because I’m very fortunate that the person I care for, cares for me, and we share the challenges together.  Plus, he’s very grateful and I have much support from our families and friends. 
But most of call, I’m blessed because God gave me the spirit of being a caregiver so I am doing what he has given me the talent to do.  Not everyone is so lucky and for them being a caregiver is a much greater challenge.  To them I say, “do the best you can but don’t expect to be perfect and don’t beat yourself up if you don’t like it.  You’re a blessing to the one you care for and that’s enough.”
So am I.

What is a Caregiver? Read More »

What Do You Feel Guilty About?

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That question was posed to me yesterday during a get-together with several other caregivers.  My first thought when I pondered that question was, “what don’t I feel guilty about?”  I realized in listening to the others share, that I don’t give myself enough credit for doing the best I can.  For example….
I feel guilty that I get annoyed at Lynn when he interrupts me over and over again when I’m trying to do other things.  I hear him call my name less than five minutes after I’ve been in his room helping him for fifteen and my first thought is, “what now?”  Then I go into his room fussing about why he couldn’t have said something while I was still there. Often his issue is something he could not have anticipated and something he really needed.  I realize that in my mind, I’m accusing him of being thoughtless of my time when really all he’s doing is asking me for help with something he really cannot do himself.  More times than not, it’s something I would have wanted done if I was him so I can’t really blame him for asking…Then the guilt comes rolling in…Why can’t I have more patience?  How can I get angry at someone just asking for help when he really can’t do it himself? What kind of caregiver am I to resent helping him? …and other thoughts which I am sure you, too, have experienced at times.
Then there’s the guilt for not doing my job as well as I used to.  I’m not as prompt in answering calls or getting back to emails.  I can’t come into work to meet with people face to face except once a week.  I’m not there to brain-storm resolutions to issues or even just to share concerns.  I don’t turn out as much work as fast as I used to.  Therefore, the guilt piles up and I feel that I’m letting everyone down at work as well.
Of course, there’s also extended and immediate family guilt.  I can’t attend family gatherings unless they are held at my home.  I can’t help out with family needs as much.  I often have  to cut conversations short to go take care of something for Lynn.  I can’t be there to support them and care for them the way I once did…More guilt.
I don’t spend time in worship as I used to.  I was very involved in my church before Lynn’s hospitalization.  I was often at church five out of seven days. We rarely missed attending a Sunday.  I tried to always pitch in to help others.  Now I’m lucky if I  find time to listen to the sermon off the internet from the previous week on Sunday morning. 
When I step back and take a look at what I’m feeling guilty about, I realize I’m ridiculous. I’m feeling guilty about being human! 
If I only had one of those things to do, then I could devote lots of time and energy to perfecting what I do, but that’s not the case.  I have to divide my time among so many needs that it’s impossible to do more. 
Imagine this:
If I was a home-made delicious apple pie that was never cut, then I would look and smell good but either would not bring much joy to anyone or if eaten all at once, I would make them sick.  If I could be cut, instead, into eight pieces, then eight people could share in the joy of my deliciousness or I could bring joy to fewer people more times.  But what if, I’m cut into sixteen pieces?  Does that mean I’m not delicious and I don’t bring joy?  No.  I would still taste just as good, though I could not bring as much immediate joy to those sharing in the pie.  I have not lost my value or the delicious flavor available to those who can sample the taste, I am just spread out to many who share the limited joy of smaller pieces.
Maybe that’s a weird analogy but it sort of works.  I still am me with all I have to offer and share, but I have just so much of me to go around.  The smaller my pieces become, the less joy I have to share with any one person.  If the ingredients were “thinned down” so that the pie would go further then it would not taste as sweet or bring as much joy so I have to allow myself to do the best I can with the pieces I have to offer at that time and not look for ways to thin myself out so much.  That also means I have to give up my way of wanting to be perfect with what I do.  I need to allow myself to let some nonessential things go, buy rather than make things, accept help and ask for more, not promise to turn around projects as fast as I once could, etc.  I need to learn to care for myself in the same way that I care for others and give myself permission to be less than perfect as long as I do the best I can at that moment.  I am still an awesome caregiver, a very skilled worker, a follower of Jesus, and an awesome Mom even though I can’t be all things to everyone I used to be at every moment. It’s time to step off my own pedestal and have a little reality check.  I’m okay and I’m doing a good job with what I have and can physically manage at any given time. 
So, time to kick guilt to the curb.  “Get thee behind me Satan. I’m a child of God and I’m doing just fine so take the guilt knife out of my back and get lost!”

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Adjusting to Disappointment

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I had a serious disappointment tonight when I got home from work. Not about Lynn but something work related.
Once a week I go to the job site where I touch base with my staff and take care of a few meetings that I feel need to be done with “face time” rather than over the phone.  On those days when I get home, I catch up with emails that I can’t really address while on site. As I was reading my emails tonight, I got a denial on a request I had made.  It was something that I had expected to get an affirmative response on and the denial came as a shock.  Obviously I can’t go into what this was about because it’s confidential but what I want to share is how it brought up all the fears again that what I’m doing–being both a full-time caregiver and a full-time employee–is negatively perceived by others.
The reality is that the rejection I received was not directly about me but it was something that impacts me indirectly–a lot.  I can tell myself intellectually that this “no” was not about the value others place on what I do.  But emotionally, what I hear myself saying is that what I do is not as important to my organization as I thought it was…and that’s hard to accept. I work SOOOOO hard to do a good job.  Thinking that those efforts are not appreciated hurts me to my core.
What has this got to do with caregiving you say?  Here’s how I link it in my mind.
…I think that I’m very good at what I do.  I believe that my staff and I actually save the company a lot of unwanted pain and suffering through the interventions we do. However, what we do is intangible. We don’t bring in any income.  We do “prevention” work so there is no tangible return-on-investment.  We “know” that if we did not step in to resolve many of the issues we get involved in that it would likely impact staff turnover and possibly there might be more complaints that have to be addressed both from internal and external sources.  However, you can’t prove the cost savings with prevention. So, many people feel what we do is an “extra” and therefore, non-essential.
That’s where my fear comes in.  What if the message I’m receiving by this rejection is actually that we are not needed?  What if this is the first step to them saying that others could do what we do in time so we are not needed?  That thought is too terrifying, so I’m not going there right now.
On the flip side…
My first response when I got the rejection was anger followed by depression and tears.  I was really hurt. It also made me feel unappreciated and undervalued.  Maybe I’m too sensitive which could certainly be true being that I only slept 5 1/2 hours last night.
Then I start thinking that if that is how they feel about what we do, maybe I should go somewhere else where I might be appreciated.  That’s where the brick wall comes in.  The reality is that I can’t go anywhere else no matter whether I’m appreciated or not.  I’ve worked here over twenty years.  I’ve worked my way up in the organization.  If I went somewhere else, I would be starting over.  I only have a bachelor’s degree. To make what I make now somewhere else, I really would need a master’s degree for my application to even be considered (their loss if they didn’t consider it though).  There is absolutely no way I could work on getting my masters degree.  I can’t commit the time or the money toward that pursuit.  So I’m stuck.
If I was not a caregiver, I would go back to school in a heart beat.  I love to learn and though it would be a challenge at my age, I’m sure I would enjoy the experience. But I already fit in 30 hours into a 24 hour day.  I can’t get to the store that is five minutes away to buy groceries without major planning and rushing through to get back. How could I sit through a three-hour class, even on-line, and be able to get anything out of it?  I couldn’t.  I had thought about getting my certification by doing self-study.  Then the day after I decided to do that, I had one of those thirty hour days where every twenty minutes I was called to do 15 minutes of caregiving and gave up THAT idea.
My reality is…I’m a caregiver first.  Then I’m an employee.  I need this job to be able to give us a place to live, insurance to pay the medical bills, and access to all the other things I need in life.  I can’t “give” to my job like I once did.  Where before I was exceptional and I amazed people at how much I could get done; now I do a good job, even a great job at times, but I can’t do an amazing job any more.  I just don’t have that option.  Now, I do the very best I can with everything I do and often don’t feel like I do anything well enough.  Some days that’s true; everything suffers.  Other days, I shine.  I just have to accept that I can’t be all things at all times and I’ve lost some of my perceived value by those with whom I work.
That perception by others that I don’t have the value I once did, hurts but not everyone feels that way, thank goodness.  Tonight I got a lovely email from someone I work with on occasion.  She was thanking me for sharing in my blog because she is just starting down this caregiver journey.  That really made me feel good.
So, I’m disappointed tonight…heartbroken for the person who will be affected by the denial even more than me, but trying to face my reality.  My priorities in life have changed.  This blog is now one of those priorities; its how I try to help others in some small way. I have to believe that maybe what I share helps others so maybe some of the trials have a greater purpose as well.  I hope so.
In the meantime, I take life one minute at a time. Have a good cry over the disappointments and move on…It’s just a job now…I have other things much more important to do.

Adjusting to Disappointment Read More »