How caregiving or MS affects the interpersonal relationship

Feeling Alone or Maybe Just Left Out

Depression is a common mood disorder in the elderly.

I always have guilt feelings when I write about any negative emotions I feel in being a caregiver but the fact is, I have them and I expect most other caregivers have them as well. It doesn’t mean we don’t love the person we care for but it means that providing care is not always a piece of cake. If you’re a parent, it’s similar to loving your kids but being angry at them for scratching the car and sometimes seriously thinking of selling them to the lowest bidder. You would NEVER actually do it and would miss them beyond words if they were not around but the fantasy…well, sometimes the fantasy helps to get past the moment.

Feeling lonely is like that. I’m actually rarely alone which is one of the reasons why I feel lonely. I am responsible for Lynn 24/7/365; just like a parent of a small child. Whereas children grow up and leave home, adults with disabilities do not unless they become too much for the caregiver to handle (and that’s not something any of us want to have happen). So, you would think to have Lynn with me all the time for companionship, I wouldn’t be lonely but I am at times.

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Blessings from Pain

Many caregivers find strength, comfort, and support from their faith. Physicians report that patients who have strong belief systems recover from major events quicker and seem to have better success rates than those who have no belief systems.

I’m sure you have heard others reference the saying “turn lemons into lemonade.” It implies taking something bad and turning it into something good. Our pastor challenged us to think along those lines but with a different twist. When something has you down or something bad/inconvenient happens, try thinking about why that’s a good thing. I have to admit I have difficulty doing that much of the time but each day I try to think of at least one thing good about that day, be thankful for it and share it on my Facebook page. It helps me to, at least once a day, think of something positive. I’ve been pretty negative lately because Lynn and I have not been feeling well and I’ve spent three weekends in the last two months in the emergency department without any answers regarding what is causing me to have abdominal pain. I know it’s nothing serious but I don’t know what it is and I’m getting tired of it. Anyway, I’m also tired of being so negative. Therefore, my post today is my attempt to take this challenging period in our lives and make it into something positive. Here goes….

I am blessed that I have been in the hospital three separate times for three overnight stays because it has allowed my family and me now to have a trial run on what we would do if I was sick for longer than overnight.

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Waiting for the Next Shoe to Drop

Caregivers often experience feelings of depression, being overwhelmed and loneliness.

I was talking to a fellow caregiver this week about an event that occurred to him and he made the comment, “Yeah, I’m just waiting for the next shoe to drop.” That comment really struck home. I confess; I’m like that most of the time. Lynn, my husband and the person I provide care to, accuses me of being pessimistic but honestly, if I don’t expect the worst, then I won’t be prepared if it occurs. It’s a matter of self-preservation from my perspective. I do admit though that I can take it too far.
Lynn has gotten a double dose of baclofen in his pump to reduce the number of spasms. Baclofen is a muscle relaxer. Not only does it relax muscles, it makes him sleepy. Therefore, he sleeps h-o-u-r-s at a time, wakes up to eat, and then goes to sleep again.
My, “what if,” talk in my head goes like this…
He sure is sleeping a lot. Shouldn’t he have adjusted to the dose by now? It’s been a month. Maybe it’s something more. Just because he has more baclofen on board doesn’t mean that’s what is causing his sleepiness. I think I should check to make sure he does not have a urinary tract infection that is not showing up yet. I wonder if his CO2 level is too high? With his sleep apnea, he might be retaining carbon dioxide which would make him sleepy. I’ll have to make sure he’s oriented when he wakes up. What if it’s something new?And on and on and on….
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I’m starting my “staycation” today. You know the kind; where you vacation at home so you can get things done that you never have time to do when you’re working. We normally vacation at the beach each year with our children but when the time came this year to pay off the rental, we realized that though we had some good times when we were there, for Lynn, most of the experience was exchanging one bedroom view for another with a lot of recovery time thrown in without access to all his special needs supplies (though it felt like I packed the house each time we went.) We decided the work involved in going and having to work around his special needs while there would not be offset enough by the short periods of time that we had available to enjoy time with the family. We enjoy having the kids around but often they were in another room or outside so we didn’t really have them around that much. So we cancelled the condo at the beach (lost $3000 in canceling the date but in the long run we preferred the loss to going.)

At first, I thought about not taking any time off at all since I use my leave time fairly often to take him to appointments or to provide his care, but then realized it would be a great opportunity to get some things done around here, so now I’m really excited about it.

My main goal for this staycation is to clean out my garage so I can move items from the spare bedroom to the garage and move things from another bedroom to the spare room. All this moving around is in preparation for installing an exercise pool. An exercise pool, mind you, that I don’t want but one that Lynn has his heart set on getting.
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Spring Into Action

Are you prepared to spring into action for an emergency? Just because you are a full time caregiver, doesn’t mean the world stops sending you other challenges so you can focus on the one needing your care.  Most of us have other family members—children, parents, siblings, even close friends or others who are near and dear to our hearts.  What happens when they have a crisis and they need you? It’s a good idea to have a plan in place for just such an emergency.
Last weekend, my Mom seemed to be having a stroke.  Suddenly, she could not say what she wanted to say but instead a weird combination of words came out.  She was fully alert and aware that her words were garbled but unable to get what was thought in her head to come out of her mouth. Thought there were no other symptoms of a stroke, dysphasia is a potential sign of stroke and one that should not be ignored so I needed to get her to the emergency room.

It’s important in times of crisis, to be able to sit aside as much emotion as possible so that fear and anxiety does not prohibit you from reacting.  Having originally been trained as a nurse, I had experience is becoming “clinical,” that is you start assessing major bodily functions, determine what is working and what is not and then plan quickly to take whatever necessary steps come next. Living in rural Virginia, our rescue squad is volunteer and doesn’t always have a team at the station plus the rule in an emergency is to take the patient to the nearest emergency room.  I wanted her to go where her medical records were located if possible and since there was no breathing concern and other vital signs were stable, I realized the quickest way to get her there was to take her myself.

Unfortunately, taking Lynn with us was out of the question.  I could not manage to care for him and my Mom at the same time so as I was having Dad help Mom get ready to go to the hospital, I immediately put an indwelling catheter into Lynn so that someone else in my family could stay with him.  Then I called his son, to come spend the night just in case but he lived an hour away; so I called my daughter who only lives 10 minutes away and she came right over.  She finished helping my parents get ready while I pulled together Lynn’s essentials—catheter (done), night time medications(assembled and labeled), morning medications (assembled and labeled), instructions for other comfort needs (written and placed on kitchen table.)  Checked and double-checked.  Lynn had or was about to have all he needed for me to leave immediately and stay away several hours.

My family has learned that when I call for help, it usually means I need to be relieved of Lynn’s care for an extended time. They have made a commitment to do what they can to always be there for us and having the knowledge of that commitment gives me such peace knowing that they have my back where he is concerned. I have an emergency folder prepared in case something happened to me and I can’t do the prep work for when I’m not here.  It’s good to have that available and to update it periodically since care for anyone with a long term condition can change over time.
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Caregiving From a Different Perspective

Each of us filters information through our previous life experiences. Through those filters, we evaluate comments made and inferences perceived and eventually make conclusions based on those filters. We also tell ourselves stories about what we see and hear based on those filters and it’s through those stories that our emotions are generated.
That being said, each of us will read a blog and get something different out of it. We will pass judgment on the writer and the content based on where we are in life and what we believe to be true at that moment. As I have been writing my columns, I have had a growing concern that what I share may be misinterpreted or may even cause pain to readers who take in what I share from the point of view of someone who has MS. When I share my “story,” it’s from the point of view of the person who cares for the person with MS. Essentially, I have MS by association. I do not have the muscle weakness, the spasticity, the loss of functioning, but I have equal impact as my husband’s full timecaregiver. I do not for a minute think I have it worse than he does. I could walk away from this situation (though I choose not to), but he cannot. My image of myself, my career choices, my plans for the future are not made based on my own limitations but every choice I make, I make with his limitations in mind.
I pledged to Lynn before God and our families that I would love and care for him in sickness and in health. I meant it. I never considered leaving when his condition deteriorated to the point it is now. I want to take care of him and I put his needs first in everything I do. I feel it is a privilege to be able to give myself over to the care of my husband whom I know would do the same if he could for me. However, that being said, this life is not easy. It’s incredibly difficult. I, alone, am responsible for ALL his needs. He only has use of his mind and his left hand and arm (and that’s before lunch each day; by lunch time, he can’t use them anymore either). I have people who come in and help me for a few hours during the day so I can continue to work full time from home. However, they do not provide for any of his physical care other than to feed him. Don’t get me wrong. What they do for him saves me a lot of time and allows me to focus on work during normal work hours rather than late at night; however, if there is a problem, I still take care of the fix.
Though, I have pledged to care for Lynn and do so willingly, I get frustrated. I get angry. I get depressed and overwhelmed when he feels bad and demands more attention that I have the energy to give.  When he asks me to adjust his inflatable cushion so that his bottom doesn’t hurt, he expects me to know, I guess by instinct, whether to add more air or take more away. He can’t tell me what to do. He looks to me to figure out everything he needs and while I understand that after he’s sit for a long time on a cushion till his bottom is either numb or painful and he can’t “feel” it anymore, it’s frustrating to be called away from cooking or from participating in a conference call while working so that I can provide a fix that I don’t know exactly how to provide. I am very adept now at cathing him while discussing highly sensitive issues during a conference call and balancing the phone with my head while I use my hands to do a sterile insertion. I often have food cooking on the stove, while I’m scratching an itch somewhere on his body and formalizing a response to an issue to give when I can get back to my email. I get angry when he sits there watching TV while I administer to his care, I finish up to leave with my arms full of supplies, and he says, “Oh, before you go I need…” I get depressed when I ache all over because I’m coming down with something, I’ve had 4 ½ hours of sleep, and still have several jobs to do and all I want to do is lie down and rest but I can’t. I get depressed when everyone from work gets to go to conferences or gets “atta boys” for what they do and I don’t because I have to stay home, out of sight/out of mind, and I feel unappreciated. I admit, I do a lot of “poor pitiful me” self-talk before I even realize what I’m doing which is unhealthy.
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My Mom's Words are Still True Today

Hazel and Roy Hale

Sixty-two years ago today, my Mom and Dad became husband and wife.  Two months later he was drafted into the army and served the next two years in Korea. As I listen to the words this young bride wrote so long ago, I look at them now and see that the love they had then is just as fresh today.
My Mom was recently diagnosed with stage III ovarian cancer.  She and Dad are staying me while she receives treatment for this life threatening condition. Though Mom’s attitude throughout this ordeal has been remarkable, Dad has been just as amazing. Though he is 82-years old and from that generation where men did men’s work and women did women’s work, he is the perfect caregiver for Mom.  He stays right by her side, always.  She has been in the hospital three times since arriving her and he stayed by her side, night and day every time.  When she rests during the day, he sits in the same room reading in case she needs him. He cooks for her, washes up afterwards, does all the laundry, helps her bath, dress, whatever is needed, he does it and with such patience and kindness that he puts me to shame.  He is such a role model of love and perseverance that I had to share this song of love dedicated to him over 62 years ago.
PS. Mom just came through surgery after chemo was used to reduce the tumor and the doctor feels she got it all!  An amazing example of God’s love and fulfillment of prayer.  I’ll miss them when they move back home but I know that she will be in good hands with my Dad, the super husband every man should strive to be.

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Take Care of Myself?

While I know people are well meaning, when they remind me to “take care of yourself,” I honestly want to ask them, “Now, how do you suppose I do that?” People who have never been full timecaregivers while jointly being a full time employee and at the same time being responsible for the food, shelter, transportation, maintenance, solving problems, researching issues, managing medical care, providing entertainment, comfort, and encouragement….have no idea what they are talking about.
I was sharing this week with a colleague how overwhelmed I was over Christmas with my father-in-law dying, helping my mother-in-law find hospice and companion care for him, helping her maneuver through insurance changes, keeping a watchful eye over my Mom who has chemo every three weeks and was admitted to the hospital for fainting spells, doing Christmas activities (mainly as a respite from medical issues) and helping Lynn who was depressed over his step-dad’s impending death and who was bummed out because he could not help me with it all.  Now, don’t you think that list of “to do’s” is a little overwhelming?  Well, at the same time, one of my four employees who handled a unique function for my team resigned, I had to start recruiting for her position, a consultant was coming in to our department who needed information, and various other challenges were being thrown my way that were work related. That’s a lot of stuff to juggle in 24-hours. My usual amount of sleep was 4-5 hours a night; so I was running on empty and admittedly using caffeine pills just to keep going. …and she tells me to “take care of yourself.” …Really??  What is she expecting—for me to eat healthy, exercise regularly and get plenty of sleep?
I wonder what people think sometimes when I tell them about my life.  Do they think that I can just call up the local “help” agency and have a fully trained, caring individual come help me out so I can take a nap?  Do they think I can just say, “Lynn, see you in a few hours.  I’m off to the gym,” or that I can choose to go to bed earlier and sleep later because all that stuff I’m doing is not essential?  I guess, they think I can just say, “No.”  However, “no,” is not an option.  Have you seen that commercial where the Mom or Dad is feeling lousy with a cold and comes into the baby’s room to say, “I’m feeling sick. I won’t be in tomorrow.”? That commercial gets attention because any parent knows you can’t just tell your child you’re taking the next day off and leave them to their own devices.  Well, that’s true too for caregivers. The only difference is that when you’re a full time caregiver, there is never a “next day” when the illness has passed and life goes back to normal because our normal is high demand, adjusting to constant change, and often feeling exhausted and achy all the time due to lack of sleep and muscle strain.
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Planning for the Future with Our Children

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

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

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

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

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.

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Is That Your Final Answer?

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.
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Thus the Week Before Christmas

Thus the week before Christmas and all through the house
Not a creature was stirring not even my spouse
A small Christmas tree had been placed on a stand
So he could “see” Christmas from his power wheelchair
The last of our children this past year had been wed
So most of my parenting worries I’d shed
While Lynn takes a nap, I put on many hats
I cook and I clean and on my keyboard I tap
When out of the quiet, I hear Lynn start to chatter
I listen intently wondering what’s the matter?
“Hey Sweetie,” he calls, “can you come get this trash?”
Now what is he doing? I muse as I dash.
The room as I enter looks peaceful and glows
With the lights from the tree and the wreath’s bright red bow
When what to my wandering gaze should appear
But his hand inching forward and heading straight to the gear
With a fear of disaster, I step over a split drink
Knowing in a moment he’d cross the room in a blink
More rapid than careful toward the joystick I aim
As he questioned my purpose and asked me my name.
Waking up a bit more, he asked, “What’s that you’re fixin?”
I give him my answer and head back to the kitchen.
In less than ten minutes once again he does call,
A deep sigh I do make and turn back toward the hall.
As I care for his needs and my hands I do dry,
I think of our blessings and tears of joy I do cry
I admit that at times my thoughts are quite blue
But I know in my heart that our faith is our glue
When I fear we won’t make it, I see I have proof
That our Lord is providing with His Word as the root.
His promises have power; His love does abound
His voice is a whisper, it makes not a sound.
Through Christmas He gave us the hope of new life
In His wisdom He gave me to Lynn as his wife
With God’s grace and Lynn’s love, there is nothing I lack
Through my service to both, a small portion I give back.
As I settle back into my chores for the night,
I pray for endurance, understanding and insight.
With a smile I keep going, there’s more to get done
But Christmas is here and we’ve been saved by the Son.
Merry Christmas!

English: Nativity scenes in Sanok
(Photo credit: Wikipedia)

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How am I Thankful? Let Me Count the Ways

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.

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I Didn't Say That

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.”

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So This is What a Day of Freedom Feels Like

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.

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Choices and Calculated Risk

I had to make a choice this week about my own care that turned out well but according to the urgent care doctor I saw, was not very bright.  Maybe so, but it was a calculated risk and one that I felt was the right decision at the time and as it turned out, was the right decision in retrospect as well.
You see, I have a lot of allergies and sensitivities.  I am often caught off guard by some new thing I’ve become allergic to so I keep epi (epinephrine) pins around just in case.  Well, Saturday night I noticed I sure had a lot of bug bites for only having been on my deck picking hot peppers for a few minutes.  As the night progressed, they were even itchier and in more places.  By morning, I had patches of hives all over which itched me to a frenzy if anything touched them; especially my hands. I wanted to claw the very skin off my hands!!  It was awful.  I figured the cause was either this new drug I had been put on for arthritis pain or the extra dose of a supplement I was taking so I stopped them both to wait for it to pass.  By night time though, I wasn’t feeling so well.  Besides the hives, I had started to feel a lot of burning pain in my GI tract and my esophagus was feeling like I had a thick lump in it. Since I have lots of medical equipment around here, I took my blood pressure–fine–my pulse–fine–and my breathing was not labored nor was my oxygen saturation off.  So having assessed my own condition, I decided to use the epi pin to stop the progressing reaction.
It helped a bit but I was still miserable and it was worse again the next morning.  Being Monday, I thought that Lynn’s family was coming so I was preparing to go to the urgent care center when they got here.  They were late so he called to see where they might be. His mom reminded him that she had told him the week before that they were coming on Tuesday, not Monday, this week.  Now what? I couldn’t take him with me because he was not feeling great either (his thyroid hormone level is way off) and besides who would take care of his needs while I was being examined etc.?  Though I hated to do it, I decided to call my daughter who has the baby that doesn’t like to eat so she is busy all day long with his feeding tube, therapy, and such.  I honestly had about decided not to go but to just suffer with the intense itching when I realized that I needed to take care of me for once. I also knew that if I didn’t call her she would have felt awful that I did not ask for her help.
As it turned out it was the perfect time of day for her to be able to come over.  I finished Lynn’s care for the morning, put in an indwelling catheter, and hooked him up to his peddler. She got here before I even got him completely ready and off I went.  I’m now on prednisone and the BEST non-itching medicine I ever had, Zyrtec. It was amazing.  I went from frantic scratching to no itching at all in a few hours.  I highly recommend it.
As I look back on this situation, I realize that I have become so used to being the caregiver that I cease to care for myself at all.  While I’ve had enough allergic reactions to be able to gauge pretty well what I need to do, those reactions can trick you and I should have done as the doctor said and call 9-1-1- right afterwards.  Why didn’t I? Because what would I have done with Lynn that late at night?  I hated to call someone out of bed to come stay with him.  I didn’t feel like I had the energy to put in a catheter.  How would I get home if an ambulance took me to the hospital? It just seemed too much of a hassle so I decided to just wait it out.  In reality, any one of our children would have come over to help if I had called.  One would have stayed with Lynn, one would have gone to the hospital and the other would have helped in whatever other capacity was needed.  I know this but I just didn’t want to ask for the help.
I am a caregiver and not a care receiver.  I know that one day something will make me a receiver but I don’t want to change that role right now.  I want to give and not receive…but then so did Lynn when his MS got worse….
We don’t have a choice often in life but to deal with what we get and make the most of it.  Sometimes we make the right choice; other times not so good.  I was lucky this time but I do need to keep in mind that if I don’t take care of myself then I won’t be here to care for him.  Therefore, as his caregiver, it is my responsibility to do what I need to do to be well enough to keep going….and going….and going…..

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Awesome News, Patrick!

When I first began to write about my experiences as an MS Caregiver, Patrick Leer was there to share an encouraging word.  Since his first comment on my blog, I have followed his journey in caregiving for his wife, Patti, whose MS has progressed to the point that she is in a long-term care facility (  However, not having her at home has not lessened his participation in caring for her.  His dedication to her well-being has been constant and remarkable.  Now Patrick is the one who needs care and support.  Patrick was diagnosed last year with Lung Cancer and a few months ago discovered it had spread to his brain (  After intensive treatment, I am thrilled to share that the brain metastasis is no longer showing on the MRI.  He continues to fight for victory over his lung metastasis but I have no doubt that he will beat that demon as well.  Way to go, Patrick!!  I’m pulling for ya!
Since I have heard about Patrick’s new challenges with his own health, my own personal health and future have been on my mind.  I’m pleased to say that a recent medical appointment indicates I’m doing well other than for on-going struggles with arthritis and the associated pain. It’s odd though how when something starts needling your brain, it seems to come up from multiple sources…
At my last caregiver’s support group at church, one of the participants challenged us to create our own personal mission statement along with a vision for our future and goals to accomplish that vision/mission. Her premise, which I think is spot on, is that we get so engrossed in caring for our loved one that we can easily lose ourselves in the daily struggles.   I totally get what she’s saying because I’m really struggling with even seeing a future beyond tomorrow.
Don’t get me wrong, I’m not being morbid and I’m not depressed, but one of the ways I cope with all that I have to do is not make too many plans beyond today or next week so that I don’t get disappointed if plans fall through. To be honest, if I was not caring for Lynn full-time while trying to work and maintain our home, I would go back to school to get my Masters Degree in Business Administration or maybe Criminal Justice. At the very least, I would study and get my certification as a Human Resources Professional.  However, every time I start to “apply” for one of those, reality sets in. To take a course, you must have quiet time to study, time to think about what you read, complete projects, maybe attend study or project groups, and go to the library.  While I might attend class online, I still have to find time to attend. I currently don’t even have time to read a book for pleasure anymore (I listen to them on tape instead).  I can’t get coverage at night to attend classes and during the day I work; shoot, during the evening and night I work because I get interrupted so much during the day, it takes me 12-hours to work 8 and 7 days to work 5.  So if I signed up for a course, I would flunk out through inability to attend or inability to complete assignments therefore, making that dream unrealistic.
My other desire is to write a book about my experiences as a caregiver.  I really enjoy writing and sharing with others and there might be 10 or 12 people out there who might find what I have to say interesting (those 10-12 include family, friends, and my church).  I know; however, since my husband is a writer, that writing a book takes a significant amount of time and getting an agent or publisher takes even more dedicated energy….not sure I have that available. I expect I would get frustrated wanting to get to my writing when so many other things were calling for my attention.  In fact, I actually started on a book on vacation last summer and da moment to look back at what I wrote since then.  Okay, then strike that goal.
Maybe the secret to this personal vision and goal business is to keep it simple.  So trying to be realistic, I need goals that only take a few steps to reach and limited time and which are in line with what I have to do each day.
Okay then, here are my goals for the future…

  • I want to have sufficient income and low enough debt to retire when I turn 66, the age at which social security says I can retire.
  • I want to be healthy enough that I can still enjoy my family and watch my grandchildren grow up.
  • I want to have been successful in being able to keep Lynn healthy enough that he is still here to share those good times with me.
  • I want to be able for us both to go back to church and participate in worship there among our church family.
  • I want us to both be well enough that on occasion we can leave this house for something other than a doctor’s appointment and actually be able to enjoy the time out without rushing to get back before he “crashes.”
  • I want to go out to dinner in a restaurant and order what looks good including dessert.
  • I want to attend a movie or a play without having to leave early or miss part of it to cath Lynn at least once.
  • I want to go shopping and get a new wedding ring to replace the one the doctor had to cut off my finger last year when I had an allergic reaction to fish oil.
  • I want to take my grandson to the park and play.

My pessimistic side tells me none of the above are likely to happen. My optimistic side says don’t give up hope.  I’ll go with optimism and keep my eye on the goal….Just maybe, I can make them happen.

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Call If You Need Anything

Ever had this conversation?
“How’s (insert family member’s name here)? You know, that if you ever need anything, anything at all, that all you have to do is call….”
Really?  In my experience most of the time that is a polite way of letting me know the person cares and at that time, they certainly mean they would be willing to help, but they hope secretly that you’ll never actually call. Getting unsolicited offers of help is rare and asking for help is just hard.
When Lynn first got sick, I always declined offers of help.  For one thing, I didn’t want anyone to think I couldn’t handle it.  He was “my” responsibility and I didn’t want anyone saying I wasn’t doing well by him. The other reason though was that Lynn had still not come to terms with his condition and he didn’t want anyone to see him so dependent on others.  In fact, when we had visitors he would stage an appearance.  His clothing had to be reminiscent of the clothes he wore before his disability.  He only ate what he could manage himself.  He would slip in and out of the gathering discretely so people would not notice him needing special attention.  He would also push himself to talk more and do more to the point of exhaustion most of the time.
As I became more exhausted from caregiving 24/7, I began to realize I had to have some help but I was still reluctant to ask for any. What a blessing it was to have someone come and offer to do something specific for us!  Offering to come to stay with Lynn so I could go shopping for supplies, to cut the grass, to prepare meals, to help me get my car repaired–all these are things I need help with, and the offer to do them for me would certainly be received favorably by me.
I realize most people don’t know what to offer and are concerned about offending me by offering to do housework or other similar things.  Trust me, I’m not offended!  Anything that I can cross off my list is something I don’t have to worry about getting accomplished and is appreciated.  So, if you’re wondering how you can help someone who is a caregiver, here’s what I would recommend.
1.  Offer to do something specific.  Think about what is a task that takes a long time or may require special skills.  For me, now that summer is here, I need yard work done. I can’t go outside and mow the grass because I cannot hear Lynn call for me and if the phone is on vibration, I can’t feel it if I’m riding the mower.  I need the grass cut, weed eating is done, grass in the driveway sprayed, repairs done to the rotten rails on my front porch, trash taken to the dump (I live in a rural area where we actually take the trash to the dump ourselves), or similar things.  I finally hired a maid service so I no longer need my house cleaned but shampooing the carpet, helping to pack up things to take to Good Will, you know all those weekend projects that take a lot of time, would be suggestions on how people could help.
2. Offer to stay with Lynn for an extended period of time.  It’s very difficult to find someone to stay with Lynn for long periods so I can run errands on the weekend.  Most people work and have busy weekend schedules themselves so setting aside an extended period to be a companion to someone is not a favorite pastime.  Also, some are intimidated by his condition.  Since he cannot do much for himself, they’re afraid he will need something they can’t handle or that they will hurt him in some way.  I remind people that he’s not fragile.  I always take care of his medical needs before I leave.  Really, all they need to do is help him with food, typing (if they know how), drinks, and other comfort items.  He really doesn’t need anything special; just someone to be his hands and feet for a while.
Once the offer is made and accepted for a specific job, there are some caregiver etiquette rules I would recommend you observe.
1.  Treat this as a job.  If you can’t come, call in advance; give a specific time and be there at that time; be prepared to stay as long as you said you would and build in a little flexibility with the time so the caregiver won’t have to stop in the middle of shopping to rush home before the sitter has to leave.
2.  Realize you are there to help out; so help.  I’ve occasionally seen people offer to come help but when they get here, they sit back and do nothing. They are just here in the body only; not connected to the needs of the patient. If you’re here to help, ask the caregiver what they need and then jump up to help promptly if the patient requests help rather than letting the caregiver still do the work.
3.  Don’t tell the caregiver, “You just have to take care of yourself better.  You need to start exercising and getting more sleep.”  When someone says that to me, I want to say, “Don’t you think I would do that if I could?  There are only so many minutes in the day and if things have to get done, there is no one else here to do them so ‘taking care of me’ will just have to wait.” They mean well but they just don’t get it.  Telling a caregiver to do something more, even if it’s good advice, just means more for us to do and it takes, too, much energy to even think about that.
I have been very fortunate because Lynn and my family are wonderful about helping us out; plus we have our church family who comes through for us all the time; however, so many caregivers are not as fortunate as me.  It’s hard to ask for help and it’s even harder to relinquish our loved one into the care of someone else but it’s a blessing when we can get some relief; some time away for ourselves or to do the things that need to be done but can’t be when you’re caring for someone.  Thank the Lord above for the angels He sends to help.  I know I couldn’t have made it without them.

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Second Generation Caregiver

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

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Caregiver or Mom?

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

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

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When is a Nurse Not a Nurse? When she's a Family Caregiver.

My first career in life was as a registered nurse.  I graduated in 1978 with a diploma in nursing and obtained my BS in 1980.  I was fortunate to have a position that allowed me to learn lots of new procedures that I would teach to others so I had exposure to all types of products, procedures, and knowledge.  Though I left nursing after my first child was born to begin a new career, I kept abreast with many of the changes. I even did home health care for a while as a second job.  I fully believe that God used those experiences to prepare me for my current role as a family caregiver.
We have had a home health nurse overseeing Lynn’s wound care for several weeks now.  I was telling her last week, that we really did not need her anymore because the pressure ulcer is nearly healed.  All I had needed her for anyway was a consultation to make sure I had the supplies I needed to care for the wound.  I could not get them as a family member but I could if I asked a home health nurse to get an order for them.
It’s been a bit frustrating at times being a nurse but unable to “be” a nurse as a family member.  When Lynn was in the hospital I assisted with all his care except managing machines.  I was unfamiliar with those so I either left them alone or had someone teach me how to manage those too (not something they would usually do).  I would do my own assessments of his body and vital signs and consult with the medical team regarding what they observed.  I still do that.
When I call in to the doctor, I have already taken vital signs, I give sizes and descriptions of skin breakdown, I describe sounds or smells that indicate problems, I have “home” kits that I use to determine if infections are developing.  I do all these things and his doctor’s trust that I know when something is wrong and they listen to my recommendations.  I am truly part of his care team.  However, because I am the spouse, I cannot “order” supplies except through home health.  I cannot get reimbursed for care provided such as wound care because I’m the spouse.  The home health nurses have not once done his wound care.  I do it.  I tell them what I’m using, what I think is going on, how it’s healing, what supplies I need, and they go along with what I say.
Not so with insurance companies.
If there is a family relationship, you lose all credibility with them.  I get “stripped” of my license when I try to justify care needs.  So I’ve learned to get what I need by getting an order for home health (which is a waste of money for the insurance company since I could easily do this without them paying for a home visit). Just another problem that exists in our health care reimbursement system.
…Just like not paying for preventive care….don’t get me started on that!
There’s another time when a nurse is not a nurse when she’s a family caregiver; that’s when she tries to tell her spouse what to do.  I have so many times told Lynn he was developing a “condition” of some sort.  I would warn him that he needed to go to the doctor to get such and such.  However, he won’t go until the situation is so bad he’s in pain or can see for himself that it won’t heal alone.  I get no credit for what I know.  Yes, I’ve “told him so” a few times now and he even admits that he needs to listen to me but there’s something in his ego that just won’t let him take directions from me.
I also realize that as a family caregiver, I’ve become his enabler.  I realize that he would probably have more “abilities” to care for himself if I was not here to do so much for him. When he’s tired, he just won’t “do” for himself. He calls me.  If he was in a facility or had someone who was not family caring for him, he would likely have to do it himself or not get it done. He would not be happy and he might have long waits, but I often wonder if I’ve done him harm by always being there to help.  On the other hand, I know that if I had not been there to watch over him, he most likely would have not lived to this point because I have caught and/or prevented so many medical issues for him before they became serious.
So, my medical background is a true blessing from God.  He’s provided me with the knowledge, skills, and abilities to care for the husband He gave me.  Though He has not led me to “be” a nurse, He has led me to “be” His healing hands for Lynn.  For that I am very grateful and we are both truly blessed.

When is a Nurse Not a Nurse? When she's a Family Caregiver. Read More »

Whom Do I Choose?

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

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I got a text message early this morning from my son saying that his fiance’s mother, Leslie, was beginning to transition toward her death.  I hadn’t heard dying referred to in that way before but it made a lot of sense as I thought about it.  There are specific changes that occur as our bodies begin to stop functioning and prepare us to die.  For those who are followers of Christ Jesus, it prepares them for accepting their heavenly bodies and begins the process of ashes to ashes; dust to dust.  Tonight at 10 p.m. she finished her transition and she has now gone home to her heavenly family.
Anticipating his call (admittedly, not quite this soon) that she had died, I’ve thought a lot about how we transition our lives.  For Leslie, she no longer suffers.  She is being welcomed by family and friends who have gone before her and by a heavenly Father who’s love surrounds her in warmth.  She has no more pain, no more worries, no more fear.  Her transition to the purest form of bless possible is now complete.
For her family, they transition to sadness mixed with some relief.  They are relieved her suffering was so brief (she was diagnosed with lung and bone cancer just two months ago) but sad because they cannot have her with them physically anymore.  There will be many adjustments for them to make since my son and his fiance lived with her and her husband.  They will each assume new roles and new responsibilities.  It will be tough on all of them and has been since she got sick but they have also grown and matured so much in the last few weeks.  I am so proud of both my son and his fiance in how they have worked together and handled this difficult time.
I also have thought about the transition that occurred in our lives when Lynn was diagnosed with MS; then again when he fell and was left helpless on the floor for several hours till I could come rescue him; and then again when he came home from the hospital so weak and de-conditioned that he could not sit up on his own or do any self-care. We transitioned from being a couple fully involved in our church to a couple who only attend church electronically now.  We used to help others and now we need others to help us.  He used to build and create with his hands and now he must do so with his mind.
Transition implies a gradual change from what was to what is.  After the transition, you’re left with a new reality.  It takes a lot of adjustment and sometimes it’s a struggle. Sometimes it’s a welcome change; other times we go kicking and screaming but in time, if we’re wise, we accept it and move on.  We take a deep breath and move forward taking it one step at a time without looking too far ahead.
Leslie has now transitioned into her new life and her family are transitioning into theirs without her.  I pray for comfort and peace for them all and am thankful for their faith and the knowledge that they are not alone.

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