Fear of the Future

Originally posted at MSCaregiverDonna July 24, 2011

Ever since Lynn almost had to go on a ventilator in May, in the back of my mind I wonder what to expect about the future.  I seriously try to just look at what today holds for me but whenever plans need to be made, I can’t help but worry.  I can’t share this with Lynn.  If I do he thinks I’m being pessimistic and that I don’t think things will turn out well. It makes him depressed because he thinks I think he’s not going to get any better… so I can’t talk to him about my fears…but they are there.

We’re going on vacation.  I so want him to have fun and enjoy it but I’m afraid he won’t. I’m afraid he will feel bad and not be able to go fishing and not want to participate and be absolutely miserable. He will try not to put a damper on it for anyone but I’ll know and I’ll stay close by and I’ll just want to be home rather than there. That’s my fear for vacation.

We’re looking at building a new home.  I want to be excited and make plans but my fears are there in the back of my mind.  Will I be able to continue to work full-time so that I can pay the bills. The house we live in now needs so many repairs to be able to be put on the market.  How can I pay for that and a new house too?  Right now I’m working from home full-time.  What if my job needs me to be on site and I can’t work from home anymore?  Who will take care of Lynn?  He cannot be alone for more than an hour by himself.  His son is starting a new full-time job. Both my kids work full-time.  He’s a big guy and needs a lot of help so not just anyone can stay with him.  So what would that mean?  A full-time licensed caregiver while I’m at work?  Insurance isn’t going to cover all that.  I won’t be able to afford a caregiver and paying to get a house built.  See where my mind goes?

Sometimes it gets very overwhelming when I think of all the responsibility and how dependent he has become on me. I miss having the freedom to sleep a full night without having to get up to catheterize him or put him on his peddler because his leg is spasming.  I miss being able to go to a store and shop.  I have four gift certificates for a massage but I can’t be gone for the two-three hours I would have to be a way to be able to use the certificates (and my muscle spasms in my back from lifting him by myself are constantly painful so I could really use the massage).

So what do I do when my mind starts going in those directions? I tell God it’s His.  I can’t handle it and I’ll just have to trust He will take care of it when the time comes.  Otherwise, I would just go mad.  But that works and I keep being able to cope and keep having hope.  Thank goodness for faith in the fact that He will help me when the time comes. He always has.

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Can You Speak?

I recently needed to use that phrase in a way I had hoped never to have to use it. No, my husband did not need CPR, but he was unresponsive. He had lost consciousness while being moved using a ceiling transport device and slipped out of the harness to fall four feet landing first on his shoulder followed by his head hitting the ground and bouncing up to slam into the door jam on the opposite side.

After hearing the thud and his caregiver’s cry of alarm, I ran to their location to find him unconscious and using a breathing pattern typical of someone who has had a seizure. His eyes were open but unseeing. My attempts to get through to him included shouting, “Can you hear me?” “Can you speak?”

Continue reading at: https://multiplesclerosis.net/caregiver/can-you-speak/

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Independence Battles Protection

Husband and wife out for a stroll.

One of the greatest struggles I have found in being a caregiver is finding the happy compromise of my husband’s need for independence and control of his life versus my need to control his environment and keep him safe and healthy. Many times these two needs seem to be in direct conflict with each other. Here’s why I think.
Lynn was in his 40’s when he was diagnosed with MS. He was married, had a child, a successful career that was very physical, he played in a band, sang, and was a strong man of faith. MS came along, and suddenly, he was vulnerable. No longer did he have the stamina to work all day and go to band or choir practice at night. No longer could the go to trade shows and walk the miles he needed to make sure the displays were set up and workings as necessary (these displays were often the size of small houses). No longer could he travel and immediately to go work after landing. No longer could he drive because he could not determine when his leg would cooperate with pushing the gas or the break. In his mind, he was losing the man he was because let’s face it; we are what we do to a large extent. He was slowing losing his identity of himself, so he was trying to control anything he had the power to control. Thus came the conflict.
As Lynn’s muscle fatigue and spasticity would get worse, so would his balance and ability to walk any distance. Several times a day, he would fall. Sometimes he would get hurt; other times it was his pride only that got hurt, but he refused to use a cane or a walker. He would put his hand on the wall or furniture or lean on me, but he was NOT going to give in and use a cane! He refused to admit he needed help because in his mind if he gave in to the disease, then the condition had won.
When Lynn was diagnosed with MS, we were married (both for the second time), both of us had children, and I have a very time consuming and difficult job. My two children lived with us, so my life was hectic all the time caring for the kids, keeping up with the house, and managing my demanding job. Though Lynn and I had joint interests (we both were in choir and both very involved in church activities), much of the time we went our separate ways because we both were super independent. I also needed to be able to control my life so I could fit everything in that I needed to do. When I have control, I feel safe and confident.
Enter: MS.
I watched as my husband’s body began to decline. I could see his struggle to keep going when exhausted. I could see how, as the day progressed, his balance got worse. I understood that he felt that if he “gave in” to the disease, he would lose his fight against it. However, I was also very frustrated with him. I saw him fall and sometimes not be able to get up knowing that at any moment, he might fall and break a limb or hit his head or break his back. I KNEW he needed to use something for support. I KNEW he needed to make changes in his lifestyle to conserve energy…but, he refused. I became angry.
I was angry and frustrated. He was angry and frustrated. Both of us felt right in what we were doing, and both of us were, but we needed a compromise. Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-independence-battles-protection/

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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.
Continue reading this post at: http://multiplesclerosis.net/living-with-ms/handling-grief/

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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.
Continue to read the rest of this post at

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Fear of the Future

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.

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See Me Through His Eyes

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.


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911-Do you do catheters?

One night this week, just about bedtime, I became very nauseated and started feeling really lousy.  It had the feel of when I’m about to have an allergic reaction to something.  I have lots of food allergies and I often find out about a new one though several hours of agony and being tied to the restroom.  I thought it might be that or food poisoning.  Fortunately, it turned out to be neither but it sure gave me a scare.
I, like most people, hate to be sick.  It’s miserable but usually if I have someone to bring me things, I just stay put in the bathroom, often on the floor on a blanket, till it passes.  As I was contemplating possibly having such a night I went between dread of being sick and panic as to what was I going to do about Lynn?
There were several issues.  The most immediate was that I felt like I couldn’t stay up another minute but still had to finish feeding him, giving him his nebulizer treatment, cathing him, and getting him ready for sleep.  With each request he made, I became more and more cranky and desperate to lie down.  I finally did, lying very still, breathing shallowly, and praying I would not be sick.  Thanks, God for granting that wish….
As I lay there in dread, the other struggle was what was I going to do if I did indeed get sick?
1.  What if I needed help?  Lynn is attached to a peddler at night so he can peddle when his legs get stiff. He could pull out of it but he also doesn’t usually hear me if I yell from the bathroom and he can’t get his wheelchair through the door to bring me anything.  Solution:  Take a phone into the bathroom with me.  Plan:  Get a phone for the bathroom permanently.
2.  He needs to be cathed several times a night.  He cannot urinate on his own. If I was too sick to move, who could cath him?  That’s where my mind went to 9-1-1.  I figure if a rescue squad could put in a catheter in an emergency, not being able to empty one’s bladder can lead to one, so the solution is to call 911 to get them to come put in a foley.  Did you know that if a person cannot empty their bladder that after a while they will go into shock?  The urine backs up to the kidney and then on toward overloading the heart and lungs.  It doesn’t happen immediately but it can cause a lot of pain and the shock comes long before the other parts. So I think 911 is a good option.
3.  If I’m sick for hours, I sure am not going to feel like taking care of him the next day. Lord, give me strength!  I know I would try to push through though.  I would certainly have to call for help I expect but there are so many things family and friends just don’t know how to do and I still don’t have an arrangement yet for intermittent nursing help.  Got to get back into looking for that again.
Just so much more to consider when someone is so dependent on you for everything they need.  I also know that emotionally Lynn would be devastated if I was very sick.  He gets so afraid if I seem to be sick or hurt.  He worries about me but he’s also very afraid of what would happen to him.  He says all the time that he would give up and die if I was no longer around to help him.  Talk about pressure…
Anyway, I dodged the bullet.  Whatever was wrong finally went away.  I felt yucky the next day but functional so it was a false alarm, thank God.  So once again we were blessed to avoid another crisis and managed through what we had.  Aren’t we fortunate to have such a caring God to take care of us that way? 
Yes, we are….

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Sometimes I Feel Like I will Explode

Pressure.   So much pressure.  …but where does it come from?  Me or “them?”
This has been one of those weeks where I have felt I was under extreme pressure all week.  The week started off with me getting up early on Monday for a conference call that wasn’t actually scheduled till Tuesday.  I needed to get up early anyway in order to have the four hours I need to get ready before I go into work for meetings so it was actually somewhat of a relief to have gotten the date wrong but that meant also getting up early the next day…which I did.  “Issues” started flowing in from work Tuesday afternoon and I haven’t had a break since….
My job can be very intensive.  I coordinate investigations, consult on workplace conflicts, and generally give advise on how to address problems.  Often participants are very emotional and the consultations are intense.  I have to be “on my game,” able to listen for variations of the truth, able to see through smoke screens to the facts, able to determine what laws apply and what solutions might work in a situation based on personalities and behaviors that I rely on others to describe.  Therefore, I need to concentrate on what is being said, how it’s being said, and what is not said to make sure I manage a situation effectively.
Now imagine this…I’m on a speaker phone attending a conference call about some highly emotional issue.  I’m multitasking at my desk, looking up information, referencing reports, taking notes, and planning strategies with the people on the line.  Over the baby monitor on my desk, I hear, “Donna I need to be cathed.”  So I take the speaker phone with me, mute the line, glove up and take care of business, never missing a beat.  Then he mouths, “I need nose spray,”  so I apply the spray, then as I put down the spray, “can you make me some tea?” I continue to carry on my conversation and go make the tea. When I deliver it, his foot has come loose from the stirrups in the peddler so I fix that, his socks need to be pulled up and his shin needs scratching.  I finish all this, still on the phone and go back to my desk.  Fifteen minutes later, “Sweetie, can you come here?” and it starts again.
Some days I do okay with this pace; other days I don’t.  When the issues are intense or the stakes are high, I feel intense internal conflict between who gets my attention at that moment. So far, I’ve managed to juggle it all– I can multitask like you wouldn’t believe, but the pressure is getting to me. Several times this week, I’ve just felt like I could not keep going like this.  I would love to quite the dual role.  I would love to go back to work and have someone else be the caregiver for a while but I can’t afford to do that.  The cost would just be too much so I keep going. I admit there are times I almost wish I would get injured or sick so I would have an excuse to stop for a while.  If that would happen, then insurance would pay for a temporary caregiver at least and the decision to stop being a caregiver, even temporarily, wouldn’t be mine to make.
I am very fearful that eventually I won’t be able to keep up the pace.  What will happen then?  We have a little savings but that would not last long if full-time care was needed.  If we lost most of our resources, then we would be eligible for assistance but I don’t want to lose nearly everything so I can get some help.  If I quite my job and worked part-time, we could not pay our bills.  Lynn could go into a care facility but I couldn’t (not that I ever want him to have to do that) but if that happens, what happens to me, the caregiver, who has burned out, lost their income, lost their home, lost their savings? 
I’m getting morbid and over-dramatic but it’s these type of thoughts that cause the pressure.  I don’t want my worst fears to happen. I don’t want to lose our home or to have to put Lynn in a care facility; nor do I want to lose my job (believe it or not, I really like what I do).  So I feel pressured…pressured to do my best at work so I don’t let down my colleagues; pressure to do my best for Lynn because I love him and am committed to him; pressure to try to be a supportive mother and friend; pressure to make it all work.  Where does this pressure come from?  From me. From my own expectations.  From my own demands to do it all perfectly.
So maybe what I need to do is go find a pin…I think its time to create a small leak.  Just a little leak to reduce some of the pressure; not so much as to make me explode or deflate entirely… just enough to stay afloat like a balloon that has lost its elasticity and becomes almost puncture proof.  That’s my goal. To become a low pressure, rubbery balloon. Sounds good doesn’t it? Or better yet, I guess I just need to turn it over to God and let him handle it because it’s just too much for me right now.  So….God, this is Donna.  Here… it’s yours.  Thanks and Amen.

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Free to a Good Home…with patience

Lynn has started a new MS medication–at least new for him.  It’s Rebif, an interferon beta-1a therapy that is supposed to slow disease progression, reduce the development of lesions, and reduce exacerbation occurrences.  Sounds like a good drug but it’s also used primarily for relapsing-remitting forms of MS and Lynn maybe into secondary progression now, so we’ll see… What I do like about it is that he only gets it three times a week instead of every day.  That’s a nice difference from Copaxone.
Now, for the other side of the coin and why I want to give HIM away to a good home! Due to the side-effects of the medication, the dosage is titrated upward (i.e., gradually increased over time so that the body has time to adjust to it before increasing the dosage). He just finished the 8.8 mcg dose and will begin the 22 mcg dose tonight. So far side-effects for the flu-like symptoms have been minimal.  However, Lynn is VERY sensitive to any change in medication routine and he’s been feeling miserable all week.
Primarily he has been feeling tired and irritable…nothing seems to make him comfortable.  He has a brief period when he first wakes up in the morning when he feels half-human but by the time he takes his morning medications, completes his morning bathroom routine, and does a few exercises, he’s “done in.” He then has nothing left for the day.  I put him on his peddler and start the process of my dual life.  I work maybe 15 minutes, then, “Hey, sweetie,” is heard from down the hall, and I go (pick one or more: give him nose spray, get him cold water or hot tea, adjust his clothing, fix the peddler, scratch an itch, change the TV channel, help him with the computer, …).  He just can’t get comfortable.
Then there’s the irritability…  I have a baby monitor that sits beside my work computer so I can hear what he needs.  His “comments” generally indicate a great deal of frustration.  I know he has absolutely no patience right now and I usually get a string of commands/requests rather than one or two.  He apologizes all day because he hates to be this way but he’s so miserable he just can’t help it.
He has also gotten depressed.  That is one of the major side-effects of this drug.  In fact, it can lead to suicide.  He’s not there or even close but he was nearly in tears this afternoon talking about being afraid.  Whenever he starts feeling this bad, he becomes afraid that it won’t end…that life going forward will always be this way.  That’s pretty common for anyone who feels bad but I especially think it’s difficult for those with a medical condition that often DOES get worse and stay bad.  He used to not share these concerns with me but he’s learned that if he does, I can usually help him see that there is a temporary reason for why he feels so lousy.  I expect though that he may need a lot more support while on this medication and maybe even an increase in the anti-depressant he’s on.  I’ll keep a close watch out for how he is doing for sure.
The hard part for me now is that I’m so conflicted.  My job needs my attention more these days.  My daughter’s baby is due June 3 and I’m planning a baby shower for her on April 28…that’s fun but it also takes time and a lot of work to put it together.  (it’s not so much work if you don’t already have too much to do but in my small world right now, ANYTHING extra, good or bad, is a lot of work!) I want to be there for him but he’s wearing me out.  Last night I had to get up to either cath him or help him get comfortable literally every hour and a half.   I’ve been miserable myself all day (I did take a nap for an hour this afternoon so that helped a great deal).
He’s napping right now so that’s why I have time to write this.  I dread the next two months as his medication titrates upward and he will most likely get more side-effects. I really pray (literally) that the medication will help him and that his system will adapt soon.
If any of you use or have a family member who uses Rebif, can you let me know how long it takes for the side-effects to settle and become manageable?  Thanks

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The Secret Life of a Caregiver

 I follow the writings of another caregiver, Patrick, (http://caregivinglyyours.blogspot.com) who has been caring for his wife who has MS for 22 years.  Patrick recently discovered he had cancer and one of the comments he made in his blog struck home with me.  Patrick described how he hid the truth of his illness from his wife so that she would not become upset over the news. When I read that, I wanted to reach out and give him a hug and say, “I know.”
Who, as a caregiver, has not been in the position of putting on a smile to hide the true emotions they are feeling?  I have been very fortunate (so far) that I have not had any serious illness to hide, but I have learned that I must be careful what I share. I remember coming home from a medical appointment where my healthcare provider warned me that if I didn’t get some sleep, I was likely to become very ill…and then who would care for Lynn?  More than a concern about my own health, I started taking measures to address the warning so that I would be around to care for him. 
I admit though, I told Lynn what the doctor said.  He initially took it in and encouraged me to follow the doctor’s advise.  Then I started noticing that depression was setting in for him.  He would be on the verge of tears and he was constantly asking me how I was feeling.  I realized that while I felt responsible for him, he felt guilty for the potential harm he was causing me and he was having a very difficult time dealing with it.
In the spirit of full disclosure, I will share that I am sometimes evil.  Sometimes I am so tired of being tired and I’m hurting all over from muscle strain and the burden of doing everything, and I just want to escape…then he calls, “hey, sweetie!” to scratch an itch for the 10th time in an hour or to adjust his clothing…AGAIN… or something else he needs when I’m in the middle of trying to get something done that REALLY needs to be done.  I admit in that moment, I want to make him feel guilty so that he stops needing me so much.  I tell myself that he doesn’t really need that much attention or that he just wants my company so he’s making up reasons to call me, or he’s just being plan unreasonable and impatient…. I’m angry and resentful of the situation so I say something that I think will make him feel sorry for me.  I hope you all will not think too badly of me but at those times, I’m evil and mean.  I don’t like myself after that and when I see I stuck home with what I said to him and he’s feeling guilty then I feel awful and try to make it up to him…but I admit, it happens…especially at night when I’m tired.  It’s embarrassing and I feel guilty that I’m so petty but it’s true unfortunately.
I’ve found that I have many secrets as a caregiver.  I keep my fears a secret (when will he get worse, what do I do about a caregiver, how can I manage repairs, etc.)  I keep my desires secret (I want to escape, I don’t want our life to be this hard, I don’t want to move one day)  I keep concerns about my health a secret (are those just stress palpitations? do I need surgery on my thumb joints?) I keep my “bad” self secret–my grouchiness, my frustrations, my resentment at times.  
I keep all these things secret because I don’t want to hurt Lynn.  Some of it he knows by observation and experience anyway (especially my grouchy nature)  and sometimes I share just enough to prepare him for what may come but not so much as to drive him into a depression.  It’s tough being the strong one though.  Sometimes you just want someone else to carry the burden awhile.  That’s why I wanted to give Patrick a hug and say, “I know.” 
To Patrick:
I’m praying for you, Patrick and wish you the very best. I’m so glad the surgery was successful and you dodged the bullet, but right now, it’s time for someone else to care for the caregiver.  God Bless.

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The Day It all Changed

In 2010, I was going into work every day and Lynn stayed home alone. At that time he was still walking though he would lose his balance frequently and fall. However, being the stubborn man he was, he chose not to use his rollator unless absolutely necessary (i.e. he was too tired or had too far to walk) and would instead hold on to furniture to get around.  On this day in March, I left early to head to Williamsburg to attend a conference for the day.  It was approximately an hour drive to where I needed to go.  I got everything set up for Lynn for the day and off I went.  I had made it to the conference center and was checking in as my pager went off.  I dropped by things on a chair and went out to find out who needed me.  When I saw my home number, I got nervous but figured he was just checking to make sure I had arrived safely.  (He gets very concerned whenever I have travel.) 
I called and said, “I’m here safe and sound…no worries.”  Then I heard his voice and realized that maybe I had a worry after all.  He started out with something like, “I need you.”  One second, I’m annoyed thinking, “what can I do from here?” and the next I’m scared and I’m thinking again, “what can I do from here?”  He explained that he had fallen when he tried to get out of bed and had been trying for an hour to get up.  He was exhausted and panicked and obviously scared.   I did my usual nursing telephone assessment (are you bleeding, can you breath okay, anything hurting, did you hit anything on the way down…) I asked him about calling an ambulance but we didn’t have a key hidden outside and there would be no way for them to get in and no one else was at home for me to call to run over there.  So I told him to hold on and I’d be there as soon as I could.  I grabbed my things and took off.
By the time I arrived home, Lynn had been lying on the floor near a heating vent for about three hours.  He was exhausted from struggling to get away from the vent;  dehydrated from the heat; emotionally distraught from fear and frustration.  He was overheated and started vomiting shortly after I got him off the floor (which was very difficult by this point).  He was in bed for the next two days and was never the same after that.  To this day, he’s now afraid for me to leave him alone for any significant period of time and panics at the though of me being far away.
That day marked the day our lives truly changed due to MS–more so than being diagnosed; more than his losing his job; more than anything that has happened since.  That was the day he became DISABLED.  That’s when he faced his mortality and he realized that life as he knew it had changed and he was no longer in control.
That’s also the day we became “disconnected” from others  After that I started staying home full-time to work and only went into the office for meetings and then only if I had someone to stay with him.  We became more isolated.  Afraid to be around anyone who might make him sick, we stopped going to church.  Limited to a wheelchair (because now he was afraid to walk on his own) we could not visit friends because there was no wheelchair access.  I could not go visit my parents who live five hours away because their home is not wheelchair accessible.  I could not leave him along to go shopping so I shopped via the internet.  I couldn’t visit anyone so they had to come to us (and since we live in a rural area, that was not very convenient.)  I realized that if we kept going that way, depression would set in for both of us and his condition would deteriorate even more.
So we had to find ways to get connected!  I started asking for help from church. We have a wonderful church member who has created a ministry of sending email messages to members to keep anyone who wants to know up to date on prayer requests and praises or requests for assistance.   I sent email requests for help and before long I had the help I needed and the process of connecting again began.  Our families and friends now come to us more often because we have reached out and asked for help…and they give it abundantly.  Even our stent(s) in the hospital last year served to connect us to others.  Through that visit I came up with the idea of this blog by talking to the wife of another MS patient. 
And through this blog, I have connected even more. I connect to people who have MS, people who know people who have MS, people who care for people with MS.  Some live close by and some live very far away.  Some know very little about MS and others have lived with it for 20-30 years.  We are all different but we all have a common connection–MS or caregiving.  That bond makes us family and friends instantly–a connection that brings us together even though I would not know most of these people if I was sitting across from them.  But through this bond of our desire to care for each other and relate to each other,we are connected on an intimate basis.
The National MS Society is starting a similar connection on March 12.  It’s called MS Connection and will be located at  http://ntl.ms/MSconnection.   It looks interesting and looks like a way to help us all make more connections so none of us have to deal with this condition alone.  Check it out when you get a chance.  I think you’ll find it has lots of potential.

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Who Has It Worse?

When I run into coworkers, friends, family, people from church, etc., I can see in their eyes that they feel sorry for me.  Many say, “I don’t know how you do it, day in and day out. I don’t think I could.”
I don’t feel comfortable when someone tells me that.  I don’t feel like I need anyone’s pity or that we are a tragic couple.  I know that our lives are really quite good.  We get along very well.  We have wonderful family members both close by and far away who constantly support us and give us encouragement.  We have a church family that really walks the talk that Jesus proclaimed while he walked the earth.  I work for a compassionate supervisor in a job that is challenging and rewarding.  I have the best employees working for me that anyone could ever ask for. I love where I work and what I do.  We have enough–enough money to pay our bills, more than enough stuff as evidenced by the fact I can’t find enough places to put it all, and more than enough food as is obvious by our waistlines.  We have good lives.
Yes, our lives are hard at times.  Lynn rarely feels good. He is often uncomfortable.  He is needy at times, stubborn at others, often funny, and sometimes angry.  I almost never get to “sleep in,” or sit down to read a book or watch TV.  I never go out on my own to shop or visit or do anything that is not essential.  I watch every penny we have and the money going out is often more than the money coming in but not always… so it evens out. 
Lynn has a lot of physical challenges.  He has basically no use of his legs or right arm and his left arm fatigues by the end of the day.  Many of his bodily functions do not work well on their own and need some help along the way like urinary catheterization or a bowel routine.  It takes a lot of strength and energy to move him around and by the end of the day.  I’m often tired and sore but a good night’s rest and I’m fine to get back at it again the next day.
When people look at me with that sadness in their eyes and say they couldn’t do it, what they don’t understand is that we didn’t get where we are now overnight.  It was a progression of decline.  By stages his abilities got less and at each stage we learned to adapt.  When it’s gradual you have time to adjust and seek ways to make it better and …. find a new normal.  The people who wake up and suddenly can’t walk, or see, or hear; they are the ones who have it worse.  MS can do that to you.  One day you are fine and the next day you can’t see anymore. How scary is that?  You don’t have time to adjust, you just ARE.  Everyone is scared but trying to support the one who is now blind or deaf, or immobile.  No one has time to really adjust….  Suddenly your lives change and you’re thrust into a new reality.  Now that’s hard.
You know what else is hard?  When you’re caring for someone whose memory is fading.  Lynn occasionally has some cognition issues.  It’s usually just when he’s very tired or feels really lousy, but when he has asked me the same question three times in 3o minutes, it gets annoying.  I can’t imagine dealing with that over and over and over again and knowing that it’s going to be like that every day all day.  With Lynn, I settle him in one place and he has to stay there because he’s immobile.  I really feel for those whose loved one is mobile but not thinking clearly.  I would be afraid all the time that they would leave the house or start a fire or turn against me because they didn’t know who I was.  That’s got to be so much worse than dealing with someone who is physically challenged.  …..  or maybe not.
What I do know is this–whatever is your challenge…whether physical, mental, spiritual, emotional, or whatever it is; it’s your challenge and that makes it difficult and becomes your struggle and whatever that struggle is, it’s hard for you.  Yes, you can always find someone worse off than you are but in their shoes, they may look at you and think the same.  Everyone’s pain is real.  Everyone’s challenge is theirs and it’s just as difficult as the next person’s. 
So who has it worse?  We all do; each in our own way and each with our own struggles.  That’s why we need each other and God to help us carry on from one morning to another to another to another….
Ps.  Feel free if you every need to share to drop me a line if you don’t want to do a public comment.  Sometimes it helps just to share.

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Weathering the storm

Hurricane Irene has moved on now and we fared pretty well.  We lost electricity at 2 pm on Saturday and we still don’t have it back here at 5:30 p.m. p.m. on Sunday.  Our yard is a mess and we’ve lost everything in our refrigerator but I think the freezer food for the most part is okay.  We have a generator running a small air conditioning unit and a friend brought us another one for the freezer which also allowed me to hook up a TV and the computer.

Lynn is feeling really bad though.  Low pressure systems really hurt him.  He feels like he’s been run over by a truck.  He’s also emotionally hurting.  He’s been on the verge of tears all day because I’m having to do everything to recover from the hurricane.  He’s so frustrated because he can’t help or do it himself.  It has been difficult trying to help him and manage everything in the aftermath plus, I couldn’t sleep much last night.

It’s hard seeing him so upset over his loss of ability to help out. It hurts as a man to have your wife do everything for you and then also handle emergencies as well.  He feels so worthless at times and that’s so hard to see and so hard to help him overcome because the reality is, he can’t do those things anymore and he is limited on how he can help.  I try to help him keep his “manhood” by letting him help as much as possible but I often get frustrated because I just don’t know what I’m doing and it’s not easy for him to explain it to me at times.  I’m pretty dense with mechanical things although I do eventually “get it.”

The power company has us on priority but who knows when we will be fixed since there are probably hundreds also on priority with medical problems.  My daughter has come over to get the gas can to get more fuel for use tonight. Sure hope nothing in the freezer has gone bad since we plan to eat that!

If anyone’s looking for something to do, I know a yard that needs to be cleaned up!

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We have MS

You will notice as I write these blogs that I always talk about “we”–  “we were in the hospital,” “we are learning to live with xxx.”  I don’t mean to minimize that Lynn is the one with MS and he is the one who ultimately has to deal with the frustrations, pain, discomfort and significant changes in his life, but he was not diagnosed with MS alone, WE were.

 What happens to him happens to me.  When he can’t move, I move for him.  When he needs information, I get it.  If he needs equipment, I find a way to get it.  If he gets upset, I deal with the emotions.  If he wants to get from point A to point B, I get him there.  So Lynn is not the only one with MS; I have it too.  I live with the frustration of being housebound most of the time.  I live with the fact that he needs to be catheterized every two hours so I can’t go away for long.  I live with being interrupted every few minutes all day and night to help him do what he needs to do. My life is no longer my own–my life is now dedicated to making his better and bearable.

So if you wonder why I refer to everything that happens to him as if it happens to me too….it does.  Just in a different way, but I have MS too.

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