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Retirement to the Rescue

I have always had a tough time saying no to anyone. Saying no fills me with guilt. I like to solve problems and make others feel better. I, therefore, tend to suffer from a lot of blame if I can’t solve the issues presented for a resolution quickly or at all. I feel like a failure creating feelings of depression and anger.


On the other hand, pushing to answer complex problems can result in positive consequences, too. To avoid feelings of guilt, I struggle to try harder to succeed in reaching my goal of meeting the person’s needs, and it helps me to be more creative. However, often along with the added energy and motivation comes additional stress and anxiety.


Continue reading at https://multiplesclerosis.net/caregiver/retirement/

I’m No Angel

I admit my life is very busy and very difficult. I also admit I manage it pretty well, but just because I have to do some pretty difficult tasks day after day and I keep doing them, doesn’t make me an angel. I realize that most people who are not full-time caregivers are amazed at what I do and how I manage but that just means I know stuff and I have abilities and that God blessed me with a servant’s heart that allows me to meet these challenges without quitting. It does not make me an angel.


I bet if you’re a caregiver, you’ve been called an angel a time or two, also. It’s a compliment that is intended to reward you for all your hard work, and I admit, it sounds nice, but when someone tells me I’m an angel, I’m embarrassed and I feel guilty because I’m far from being an angel.


continue reading at

https://multiplesclerosis.net/caregiver/im-no-angel/

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.


Continue reading at

 https://multiplesclerosis.net/caregiver/caregiver-perspective-feeling-alone-or-maybe-just-left-out/

Lack of Sleep. The Root of All Evil?

There are a lot of responsibilities and consequences in being a caregiver that I don’t like; things I would prefer not to do or which are difficult to manage, but the biggest challenge I have is lack of sleep. I think that if I had time to sleep more, my life would be a lot different.


Typically, I get five hours of sleep a night. If I were to have an opportunity to sleep through the night without interference, I would probably naturally wake up after nine hours. Nine hours is more like the “sleeping in on Saturday morning” days I remember back before children and back before Lynn became disabled. When I was going into work in the days before Lynn became immobile, I usually got eight hours and certainly at least seven of sleep a night unless someone was sick or we had been up for some special occasion. I remember those days fondly. I felt good. I had energy. I felt rested and refreshed when I awoke each morning ready to take on the day.

I miss those days.

Continue reading at

 https://multiplesclerosis.net/caregiver/caregiver-perspective-lack-of-sleep-the-root-of-all-evil/

Managing Caregiver Chaos

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

So, How Are You….Really?

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

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

The Impact of Caregiving on the Caregiver

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

 Mental and Emotional Health Impact of Caregiving

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

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

 Caregiving Impact on Physical Health

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

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

All He Can Do Is Yell

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

Trying to be All Things at All Times

I’m having one of those “half-empty” days.  Didn’t start out that way.  I was excited because Lynn was having his Tram delivered today and I knew he would be happy to have that.  The Tram is a device we bought to help him stand and perhaps even walk one day so it’s a “hopeful” device based on our faith that he will be able to do more in line with walking, in time.
However, he woke up not feeling well from his Rebif shot last night.  When he doesn’t feel well, my day becomes devoted to his constant need for attention.  I needed today to catch up on work I was behind in from my job.  I count of having some dedicated time on Saturday and Sunday to make up for the time I have to spend caring for him during the week. Well, it’s now 7:30 p.m. and I’ve given up the hope that I’ll get to do any work.  I realized I was depressed and feeling overwhelmed so I decided to talk to you all because I know you understand.  In other words, you’ve “been there, done that.”
I get so discouraged sometimes.  Lynn wants me to be all things at all times and I get so tired of trying to keep up with it all.  For example, he has an itch that needs to be scratched so he calls me to come scratch his leg.  I get there and he looks at me expectedly as if I should know what itches so I go through the twenty-questions routine to narrow it down.  “Which leg, top or bottom, nearer the foot or thigh, inner or outer side,” until finally I get an idea of where the itch is.  Then I scratch wondering if I’m coming close and when I can stop.  He expects me to instinctually just know what he needs.
A few minutes later, “Donna, come fix my patch.”  Lynn has a pressure ulcer on his buttock I’ve been treating and covering with a foam-type patch.  It’s large enough that it pulls on his skin hair at times or sometimes the problem is the air-bladders in his seat cushion that press against it and make it hurts.  Whatever the problem, he expects me to make it better. He looks at me imploringly to say, “make it stop hurting” and I fiddle around under his leg, lifting it up, smoothing out the wrinkles, padding down the sharp points that come from under-inflated air bladders to see if “it makes it all better.” Sometimes it works right away; other times I work and work to make it all better. When it’s the last scenario, I feel like crying in frustration before I’m released by him to go back to whatever job I was trying to do before he called me for help.
When I’m not magically trying to fix pain and discomfort, then I’m acting as psychologist.  This week he got depressed because he had a visitor who choose to tell him about two people she knew with MS who had serious complications or whom the disease had devastated.  One of them died and the other is bed-ridden and in a lot of pain all the time. After she left, Lynn, in exasperation asked, “why do people do that? Why would anyone tell someone with a chronic health condition about someone with the same condition that was doing much worse than they are?  Can’t they understand that I don’t want to hear about how “bad” I could get? It’s hard enough to keep a positive attitude and keep fighting this thing without someone trying to bring me down with stories of how others lost their battle.” After that visit he was irritable and easily annoyed for a while so he needed a lot of attention.
A new challenge lies ahead for me. Lynn now has his Tram which could lead the way to a lot of progress OR it could result in a lot of disappointment and frustration if his condition won’t allow him to stand with support.  However, who is going to be the one to help him with his goal of walking?  I am of course.  Insurance cut out his home visits for Physical Therapy.  They might approve outpatient visits but honestly, if I had to take him in for PT every day, I might as well give up my job now.  It takes a minimum of three hours to get him and I ready if we are going somewhere or having someone come to us; then there’s thirty minutes or up to an hour to drive to wherever we’re going.  Therefore, to save time, I’ll have to become his PT.  I already help him every morning to change weights, apply straps, adjust positioning, hold equipment, etc. while he works out. I’ll be adding to that assistance with standing. He will need to increase his endurance by standing longer at a time so I’ll have to be close by meaning–more time away from my paying job.
Everything he asks me to do he needs to have done for optimum health. Everything he asks me to do though takes time from all the house maintenance, car maintenance, shopping, cleaning, food preparation, personal hygiene, job duties, making appointments, etc.  He REALLY needs a full-time assistant but our bills are significant enough that I couldn’t carve out that much money to have someone full-time–and in-home care is not covered by insurance. I feel like I’m working twenty-four hours a day; seven days a week.  I haven’t had a day away from him that wasn’t related to my going into work since Eli was born and I stayed at the hospital all day/night with Sarah and Greg waiting for his arrival.  That was May 27.  Before that I had a shopping day in October looking for a dress to wear to my nephew’s wedding.  That’s the only time I have been away for several hours unrelated to work in a year.
I’m tired.  I’m discouraged.  I need sleep.  I need to get away…..but I need to go give him his shower, fix dinner, get things ready for his family who are coming to our house for an after-Christmas gathering tomorrow, and meet him many requests for assistance till I fall into bed around 2:00 a.m. tonight. Oh well, life goes on…
PS:  Don’t worry about me. I’m just using you to regenerate myself. Thanks for allowing me to share my feelings with you.  I can’t do that with Lynn; it would hurt him too much.  I’ll be fine.  I’ll see my grandson tomorrow for a few minutes and the world will be smiles and coos again.
Thanks for listening.

Quiet Time

One of the rarest privileges I have as a caregiver is quiet time.  When I’m awake, I am always listening for his,”Hey, Sweetie,” call that says I’m needed.  During my work day if I’m not taking care of his needs in some way, I’m working.  From the moment I get up…no actually, twenty-four hours a day, I am being called on to either meet his needs, work, or care for our home and personal needs.  Twenty-four hours a day EXCEPT for the time between 10:00 p.m. and when I wake him for dinner around 1:00 a.m. (though tonight I’m letting him sleep longer so I can write this.)
Those three hours are my escape time.  For those three hours, I know (most likely) I can do whatever I want without being interrupted.  During that time I usually finish whatever work is still waiting for my attention, I cook dinner, prepare his meal for the next day, make smoothies for the next day, clean the kitchen, take a shower, eat my own dinner while I listen to a book (my primary form of entertainment) and occasionally throw in a few other chores.  He used to get annoyed at me for letting him sleep so long but he’s finally realized this is MY TIME.  I don’t otherwise have any period of the day where the time is my time and mine alone. 
My time alone is very precious to me.  I don’t want to share it by making phone calls (not that too many people are up socializing that time of night anyway).  I like the opportunity to finish what I’m working on.  I like being able to finish a complete thought without being interrupted.  It’s time I have control of and I can use as I see fit.  Granted I am usually working, not relaxing, but just having control of the time is so much better than the frustration of constant interruption. 
I realize parents maybe thinking that it’s the same for them but it’s not.  With a child, they sleep better and longer hours (I’m up every two – three hours all night every night) and children often go to a friend’s house to play or be handed off to the other parent (if one is in the house).  Not so for me.  Even when others are here, I’m still the primary caregiver and still working around his schedule and needs so it’s not my time.  Therefore, when he talks about making me promise to get him up after two hours, I just can’t bring myself to do it.  I think he’s finally gotten the message that these three hours are my sanity time.  If I didn’t have them, I might actually be bald from pulling my hair out or have had a break with reality.
He’s been asleep now since 10 p.m. so I really do need to go get him up for dinner plus I will get up too late in the morning to have a full day if I don’t get this last job of the day done… so I have to bring this to a close…but I love this time so much that it’s really difficult to bring it to a close.
Oh, well,….

Working from Home

Someone asked me recently about working from home.  They, like me, had someone they wanted to care for but needed a full-time income.  Knowing that I worked from home, they asked me what type of jobs would allow that option. 
I’ve done a lot of research into telework or telecommuting.  Having worked full-time from home for the past year, I want to say it’s not as easy as it would seem.  If you are thinking about working from home, consider the following.
What Jobs can be Performed from Home?
The first consideration is the amount of interaction you need with others to be able to do your job well.  Do you need to be able to talk to people face-to-face or could you accomplish as much using a phone, email, or maybe a webcam?  I’m fortunate in that my office was already located offsite from the main facility.  People who wanted to interact with me were used to calling or emailing me but I still participated in a lot of meetings where I went to see my “customer.”  A lot of people want that face-to-face interaction with you so even if you work from home, there may be times you need to go on site to be “seen.”  Therefore, you have to decide if the position you are considering can be done strictly from home or do you need to split your time between the on site office and your home office.
What Will your Hours of Work be?
When you work from home, you’re always at your office.  Lynn interrupts me a lot during my “workday” so I tend to work from the time I get up until I go to bed plus I work seven days a week.  This allows me to make up lost time from his interruptions and to keep up with my work load (which is significant.) I can do this in my job because I do a lot of independent project work and I’m exempt (meaning I don’t earn overtime). However, if you have customers who expect you to be available 8-5, you would not have that flexibility.  Plus if you earn overtime, you would have to clock in and out multiple times to keep accurate hours.
How would you handle it if your job needed you at the same time the person you are caring for needed you?  It’s difficult.  I do it all the time so it can be done but it’s not easy and it’s often frustrating.  I have both a speaker phone and a bluetooth device so I can carry on conversations while caring for Lynn.  However, it’s also very distracting to do that and you can miss things both from the person who is speaking and the one you’re caring for.
The other thing about working every day, all day, is that it’s very tiring. You never get away from work. I check my email every time I walk by my computer. I have a Blackberry, a cell phone, a house phone and my computer mail that I check on a regular basis keeping up with my job. I’ve often been on my cell phone when my house phone rang–both calls being work related.  Some people have all three numbers because they know me well.  Others, I do not want to know my personal numbers so they only have my Blackberry number. Privacy therefore, is another issue to consider–both your own and the confidentiality of customer information that you may have.
What about Equipment and Resources?
Will your employer give you equipment to use?  What about the cost of internet service, long-distance phone calls, office supplies, fax machines?  I have a phone line and a fax line that I pay for as well as my internet service.  What happens if one of my lines goes down?  I can’t work at home.  That may mean taking the day off or finding a way to go into work.  If I have to go into work, then I have to find a sitter for Lynn.  That’s not easy to do in the middle of the day.
Do you Need Social Interaction?
As a caregiver, your world is often limited to the person you are caring for.  Most of your time, energy, and social life resolves around that person.  If you also work from home, you almost become totally isolated.  I miss the people I work with.  I’m an introvert but I liked being able to talk to others and share in conversations with other adults.  It was fun to catch a lunch out on occasion and see the pictures of new grandchildren or hear about vacations.  You miss all that when you work from home.  People forget about you. They forget to share their news with you and assume you know about changes happening in the office or company that are discussed in meetings you can’t attend or in hallway conversations.  It’s difficult to feel a part of the group when you no longer share in the daily challenges.  Working from home is very isolating.
The Advantages of Working from Home
Now there’s the good side, too.  I never put on make up.  I don’t fix my hair and I wear comfortable clothes and slippers. The trip to my office is less than 30 seconds away.  I save gas, rarely need new clothes, and no one can see my expression when I’m attending a meeting through air wave connections (which I admit is sometimes a really good thing).  I also don’t catch the latest cold or virus going around so I stay healthier. 
I can give Lynn the care and support he needs.  I can make sure his needs are met in the way he wants them met. I can provide both his physical and emotional support.  But just as those are good things, they are also bad things because it also means I never am free from those responsibilities.  I save a ton of money by caring for him myself.  I don’t, in fact, know how I could afford to get someone to care for him if I could not work from home.  
Conclusion
You might consider working from home if:

  • You don’t need a lot of social interaction
  • Your job can be done primarily by telephone or electronically
  • Your hours can be flexible
  • You have back-up care in case you need to go into the office
  • You can handle not being away from your caregiving responsibilities–EVER
  • You are extremely good at multi-tasking and keeping two trains of though going at the same time all the time

I have to say it’s not for everyone. It’s been a blessing for me.  I’m very thankful I have this option and I fear the day that I might not have it.  That’s the other thing…your employer can always pull the plug on your being able to work from home.  So always, somewhere in the back of your mind, you’re wondering how long you’ll be able to keep everyone happy so nothing changes.  It’s a lot of stress.  It’s a really good option but keep in mind that most people who work from home, just work from home–they are not also trying to care for someone.  I would say that doing so is VERY rare; not impossible, but unusual.
Good luck if you’re considering this option.  Let me know if you have any questions for me.

There Go the Apples!

The life of a caregiver and their “caree” is always in such a delicate balance that I think of that old saying, “don’t tip over the apple cart.”  When I hear that analogy, I have a vision of a small cart piled high with apples, holding its own until someone puts one too many apples on the pile, and then the whole stack comes tumbling down…or maybe it’s similar to a house of cards?  Not sure which but I do know that it doesn’t take much to upset the balance.
In our world, balance is the secret to having a good day.  There needs to be a balance of sleep versus awake time; my work and his routine; his needs and my available time.  There also has to be an emotional balance.  We can cope with the routine aches, pains, fatigue, and malaise but throw in more pain, fatigue, frustration, or sleep deprivation than usual then the balance is gone and we have to work toward establishing equilibrium again….whatever that is on that particular day.
What threw us off this week was Lynn’s powerchair.  We’ve known for some time now that the motor was sounding as if it was going to go out at any time.  When we checked with our “chair repair man” however, we found out that insurance would not pay to have it replaced until it actually went bad. I know that motors are expensive (over $1400) so I understand that the insurance company doesn’t want to replace one unless they know it’s essential, but obviously, they have never had to survive a broken wheelchair!
Lynn’s powerchair is the Cadillac version.  It has three speeds, the legs elevate, and the chair tilts, among other things.  He uses the leg lift and the tilt function off and on all day to achieve comfort. When his legs get stiff, he elevates them to different positions.  When he scoots forward after a while and ends up sitting too far forward, he tilts back and gravity helps him slide back so I don’t have to lift him. These are just two of the maneuvers he does with it all day but there are many more.  Suddenly on Wednesday, he goes to tilt back to adjust his position and there is no response!  Fortunately, he was not tilted back like he was being launched into space; he was on the ground; but the impact of losing “tilt” was enormous for his quality of life. 
Since he could no longer tilt, he could no longer help me in shifting his position himself so I had to lift him more; therefore, my back is more sore.  He could not position his chair in the slight tilt needed to keep his knees from hitting the keyboard on his computer when he worked. It interfered with his comfort in sleeping (he sleeps in the chair), his exercising, his moving from place to place with his legs dangling, and so much more…but the worst was that it keep him from being able to shift his weight as he sat for hours.  By not being able to shift slightly ever so many hours, he experienced “butt fatigue” so he could not get comfortable.  His buttock skin stayed compressed longer so it is redder and he now has a couple of top layer skin tears.  There was even more impact than this but that’s enough for now. Let me just say that it was traumatic….for us both.
In our house, “if Lynn ain’t happy, nobody’s happy.”  When he’s uncomfortable, he looks to me to find a way to make him comfortable which means constant interruptions.  At times he gets angry and frustrated but that blows over.  What is worse is the sadness and worry in his eyes.  He wonders how long he will have to suffer and what the impact will be…because when the balance is off in an MS patient, bad things often happen.
Fortunately for us, it didn’t this time.  I cheered with joy today when the doorbell rang and it was the repair man with a new motor. We were both very grateful for his ability and house call.  The chair is now fixed; Lynn is comfortable again; and I should be able to get his poor butt back to health without too much trouble.
So once again, balance is restored.  We both prayed for God to help us during those hours of waiting for the repair man…and he did.  We worked together to make Lynn more comfortable and to reduce the discomfort as much as possible. … and where we could, we joked, or made light of the problem.  Using humor, seems to lighten the load so we try that out when we can.  Sometimes it works and sometimes it falls short, but most of the time we have at least a few minutes of respite to forget the seriousness.
So anyway, watch the apples you put on the chart.  Try to keep a balance.  When the focus shifts to the front, then try to lighten the back and get back the balance.  It helps to make the waiting time go much faster.

Reaching my Saturation Point – at least today

I guess I think that I can do whatever I sit my mind to and that my body and abilities will fall in line to make sure it happens.  So I strive to be the best manager, employee, mother, wife, caregiver, and friend, I can be. I want to take care of everyone’s needs and solve all their problems and still have energy afterwards to take care of our home and personal affairs.  Well, today I reached my saturation point and had a melt down…and so did Lynn….
If you follow my blog, you know that I offered to start an online “virtual” support group.  The plan was for those who were interested to call-in and we would have a conference call support group. I announced that if there was any interest, I would get it started.  I had a few interested responses so I created a Skype account and ordered a webcam.  The only problem is, I didn’t have time to learn how to use them properly.  I got everything loaded in advance but hadn’t had time to do a test drive, so, I was a little nervous about having the conference call today. 
What also didn’t help was that I was up till 2 a.m. after working till midnight on some reports for work and then getting Lynn and I ready for bed. I slept-in till 10 a.m., but I still should have had time plenty of time to see to the test before 2 p.m. when the call was scheduled.
Only it didn’t work out that way.
Each time I would sit down to pull up the program, Lynn would need something.  Then just as I was going to lay him down for  a nap, my son and his girlfriend came over to see him for father’s day. I haven’t seen either of them in a while and my son had been out of work for a week due to eye problems so I wanted to spend time with them.  While they were here, I put Lynn to bed for a short rest.  Suddenly I realized it was getting close to conference call time.  I put my conversation on hold with my son and went to get Lynn up.  Realizing I was most likely going to be late for the call, I sent an email to the other participant (I ended up with only one person interested in attending the conference call) to say I might be running late before going to get him up.  Sure enough, I was about 15 minutes late getting back to my computer after he finished with all his requests. By that point, the other party was not answering the call (I’m sure she had given up by then and if she’s reading this, I apologize for being so late!)
Since I could not get though on the call, I decided to test the connection and see how well the webcam worked.  I called to the computer in the back room where Lynn was and tried to talk to him.  The audio didn’t work well at all and he could not see the video.  So I tried to figure out how to make the equipment work properly for about thirty minutes, getting more and more frustrated as I did because the instruction book was so difficult to figure out.  Before long, I was ready to through the little camera away. 
Then Lynn needed me to turn off his camera because when he closed down Skype, the camera stayed on.  Well, it didn’t have an off button and I couldn’t find an exit menu for his software.  After spending ten minutes pushing more button, I finally decided to just unplug it.
By that point, I was in tears.
When I get upset, Lynn gets upset because he knows I’m so overwhelmed with all I have to do.  He tries to encourage me but all I want to do is cry.  So, I do, and I feel better, but that’s hard for him to understand. 
Then it’s Lynn’s turn to have a melt down…
Afterwards, I get him settled in his peddler, go fix some lunch, and go dig up some tomato plants that grow naturally near our house and transplant them into a pot on the deck.   I come inside and start to cook Lynn’s dinner when I hear something hit the floor hard in the bedroom.  Doesn’t sound big enough to be him but something obviously hit the floor.  I take off for his room and he’s heading my way in an obvious “mood.”  He looks like a thunder-cloud rolling in from the west. (Remember, I left him attached to his peddler which is obviously not attached now.) 
“What’s wrong?” I say.  He bellows back, “This !%##$%$% seat cushion is tearing up my @### and I have to get off it.”  Then he adds, as he rolls over some of the things he has knocked onto the floor, “I’m so #$%^ tired of being sick and feeling like %^&*(!” Then as he pushes his way to the bed so I can take him off the chair, he runs into the bed, knocks it off the blocks it sits on, and out rolls the knob to this wheelchair I knocked off earlier in the week and couldn’t find after searching for an hour! I yell at him, he growls, …. and then we fix the disrupted room …and our tension deflates.
It was bound to happen.  Being sick for long periods and being confined to being with someone who is sick for long periods takes a serious toll on one’s emotional stability.  Our relationship is like a see-saw.  If one is down and the other is up, we keep moving forward and it works. But when both of us are down, we’re not at a standstill, we’re broken.  Something has to give to take away some of the pressure pushing us down.  For me it was tears and for him it was banging into things and cussing. He needs a punching bag but he can’t punch so his chair and his mouth are his only outlets.  All that pent-up energy has to go somewhere!
So right now we both feel better.  We both “blew” in our own way  or got  our pent-up emotions “wrung out” of us by situations so we’re stable again….and everything’s good.
P.S.
Back to the conference call.  I’ll try it again on July 14 at 2 p.m. eastern standard time.  Send me your Skype contact information in advance if you want to be on the call.  I have some concerns about whether this is actually going to work or not.  I realized today that Lynn’s needs can’t be put on hold while I talk on the computer so being able to set aside a particular time might be a challenge.  Plus I’m a little concerned he might over hear my comments and I don’t want him to do that….Just some nagging concerns I’ve been having.  Let me know what you think, too, about it–honestly.
Till next week,
Donna

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.

Keeping up with the Paper Work

If you are a full-time caregiver, or even part-time but the primary person responsible for someone else’s care, then you know all about paper work.  It’s another one of the unpleasant aspects of caregiving that we have to endure but are all too often unprepared for or unfamiliar with.  I’m very fortunate in that I have a healthcare background.  I understand the reason behind all that information “they” gather and why it has to be reviewed every visit.  I also know about insurance to a limited degree but more about that from personal experience than professional.  All that being true; however, it still is difficult to keep up with all the paper (virtual or hardcopy) and still quite frustrating at times.
One of the things I did early in my caregiving “career” was to get a journal where I recorded all the events that happened in Lynn’s medical journey.  I wrote down every doctor’s appointment, who he saw and for what and any changes to his medical regime.  That has come in very handy when one of his many specialists asks me when something happened.  Lynn has a mind for dates and events and can tell you right down to the exact date, and often the day of the week, when something happened…and he’s rarely wrong. Me, I can’t remember if my wedding anniversary is on October 10th or the 11th.  When asked when something happened, I can give a general time frame (such as, when the kids were in grade school, high school, or college; before or after we were married…) but I do NOT remember dates; therefore, I have to write them down. 
I also try to keep a running list of all his medications on my computer.  I update it with any change and make sure it’s accurate before any medical appointment.  I update the “current as of” date and always take it with me to give to the doctor.  This saves time when the doctor or nurse is doing a “medication reconciliation” which is a Joint Commission requirement for hospitals and physician practices to be accreditated.
Knowing how important and helpful this information can be, I readily agreed when I was contacted by Tory Zellick to review an advanced copy of her book, “The Medical Day Planner: The Guide to Help Navigate the Medical Maze.”  Tory, herself was one of the caregivers for her mother, who had a six-year struggle with cancer which she was unsuccessful in winning. This book arose from Tory’s struggle to help organize her mother’s care and help everyone who participated in the caregiving to stay up to date. Maybe, if you are the sole caregiver, you would not find it as helpful as those who have multiple people helping out, but I think that even if you are the primary caregiver, you would find this Medical Planner to be a handy tool to help keep all the essential information about your loved one in one place. 
The book is well-organized, sectioned into categories of responsiblity like medications, appointments, important phone numbers, etc. Within each section are worksheets for recording pertinent information on that topic as well as narratives related to the information being gathered.  The narratives are basic and to the point, written in a common-sense approach without too much formal interpretation–just what she found she needed to understand to be able to accurately understand the information needed.
The Medical Day Planner is a spiral notebook type presentation but hard cover so it’s durable.  My only constructive criticism, which isn’t a criticism at all but a personal preference, is that I would have preferred it be in a three-ring binder instead of a spiral binding so the 52-week planner at the end could be replaced annually with new sheets.  Being in a spiral binder, it renders the planner limited to one year and as we all know, if you’re caring for someone with MS, you’re looking at years instead of weeks of caregiving. Therefore, that section is not as useful to me but the rest of the Planner is excellent.  It would also have been helpful to have a “pocket” inside the back or front cover to insert documents that you might want to take with you to appointments.
I’m not sure when the book will be available for purchase but you can check it out further if you are interested by checking out her website, http://allthingscaregiver.com/.  The advanced copy I received also had a sticker that states, “for wholesale information contact, Michele Farrington – mfarrington@tuttlepublishing.com.  It’s worth taking a look to see if you might find it helpful.
Thanks, Tory, for sharing what you learned and for letting me review your work. 
Good luck,
Donna

Back to work

I have so much going through my mind today that I find my emotions on the surface for no real reason other than overload.
We’re having friends over for dinner tonight.  They are bringing the meat and I’m doing the vegetables. This is a couple we really enjoy being with and can be ourselves with so why am I feeling overwhelmed?  Maybe because it’s 1:30 p.m. and I haven’t been able to go to the grocery store yet to pick up the vegetables. Maybe because in the course of writing this paragraph, I’ve had to go back to the bedroom twice where Lynn is supposed to be resting.  Once because “I’m ready to get up,” but he changed his mind.  Once because “I need you to push my toes”  (releaves muscle tension) and again now because, “I’m ready to get up now to peddle” and each time he calls me I go back there and he is snoring….but insists the minute he opens his eyes that he has not been sleeping and must get up because his legs are aching so much. I’ll be right back…
It’s now 3:41.  Yes, I have been helping Lynn with one thing or another since I wrote the last paragraph and can now resume where I left off. I’ve cathed him, given him his two MS shots, gotten him dressed and into his wheelchair, connected him to his peddler, given him his nose spray twice, adjusted his clothing for comfort five times, heated up his lunch (eatten mine as his cooked), fed him, cleaned up afterwards, cathed him again, answered some of his emails for him, put the dishes away and sat back down to write this again.  Oh yea, and canceled our dinner plans.  He’s achy and can’t get comfortable; he’s sleepy and irritable; just not a good day for company.  What’s wrong? Probably the change in atmospheric pressure.  We have been having the weather go from hot to cold to hot and now back to cold and when that happens, it wrecks havoc with his system so it’s not a good time for company. 
Though disappointing, not having to worry about getting ready for company is actually a relief today.  It’s fun when things are going well but not when they aren’t.  We had plans today to have the dinner tonight and to go to the fabric store and Lowes this morning to get things for the device he’s building for his legs to move in bed.  We didn’t do that either. His stomach was grumbling and questionable.  He was very tired and I was on the edge of tears most of the morning  just trying to get chores done so we could go.  When life gets like that, it’s just better to stop and let it go.  Maybe tomorrow we can go those places; or maybe not.  He had his Avonex (IM MS drug)  today so tomorrow he will feel achy like he has the flu so it might not be a good time to try a trip then either.  We’ll see.
The other stressor I’m feeling is that next week I have to start finding a way to go into work some.  Yep, the full-time working from home has come to an end.  I’ve been blessed to have it for a full year after his initial hospitalization but my supervisor asked me, very gently and kindly, if I could find a way to start coming in more often.  She was very nice about it and certainly didn’t have to be; after all I have an important job there and I’m needed so they have been more than accommodating.  In fact, she still is.  She isn’t making me come back there full-time and suggested trying once or twice a week for a few hours to see how it worked.
I have to admit, I have very mixed emotions about going back. 
Worries:  Who will stay with Lynn?  He wants me to go in on either Mondays when his son, mother, and sister come to visit or Thursdays when our friend comes to help him with his writing and book marketing.  That makes sense…he’s comfortable with all of them and they all have an idea of what to do for him but now it will go from them “wanting to come” to my “needing them” to come.  I’ll need back up plans for if they are sick or have something else to do so that will add pressure every time I plan to go in…will they come?  Plus none of them can cath him so I’ll have to put in a foley.  Foley’s are more irritating and cause urinary track infections easier due to the irritation and direct access of the catheter from the outside of the body to the inside.  We’ve had one really bad experience with a UTI which landed him in ICU. I learned from that but it has left its scar. 
Plus getting ready to leave him is always a lot of work; getting meals ready, comfort items set up, and providing him with emotional comfort. He has a lot of separation anxiety when I leave him and he can’t help but to show it which makes me feel guilty of course.  If I decide not to use family, I’ll need to find someone to come in that he likes and we can afford.  That means researching what our insurance will pay and the different care options.  Ugh, just one more task.
Pluses:  On the other hand, I’ll be able to get away.  I REALLY need to get away.  I can feel the stress build up of constantly having to stop what I’m doing to scratch, adjust, fetch, move, etc.  I miss the people I work with.  I miss doing something that is productive and is an accomplishment.  I miss interacting with others and I need to be able to get away from “Hey Sweetie!” 
I think going back to work will be a good thing.  He needs to learn to let me go and I need the break.  I hope I can handle the extra work though.  To go into work means I’ll actually have to work more hours.  Currently, I can just go to my desk in my living room and begin work.  Now, I’ll have to get myself ready and get him ready and drive the 45 minutes – an hour (depending on traffic) to my job and back so all that will be lost time I’ll have to make up.  So in order to work two hours there, I’ll have to make up four hours when I get back home or on the weekend.  If I go in twice, then it doubles.  It will certainly be a challenge but somehow I’ll make it work.  I have to…so I will.

What a day!

I have had a terrible day, and it’s all due to having to get a new modem to my computer.  I truly believe computers can either be your best friend or your worst nightmare, and since about Wednesday; I’ve had it up to my eyeballs in frustration with them.

 

First, on Tuesday, I lost the internet.  I HAVE to have the internet because that’s how I connect to work.  I called tech support and spent over an hour, trying to figure out what was wrong.  They decided it was my modem and said they would have to send me one.  I was really upset.  If I can’t work from home, I have to go to work.  Who was going to stay with Lynn if I went in?  If I didn’t go in, I had to take a vacation day.  Who wants to take a vacation because their internet is down? 

 

I was on the verge of tears.  Lynn insisted he would be fine and I had to leave him home alone.  I didn’t want to but what other choice did I have?  I started getting him ready, getting the items he would need within reach, tidied myself up to go in (I don’t exactly dress professionally at home), and got ready to leave.  Fortunately, before I got to the main highway, Lynn called to say the internet was back up.  I was so relieved! I turned around and came home (so much for the tech support diagnosis).


Late Wednesday the modem came in by UPS.  Supposedly it’s faster than what I had so this morning I hooked it up.  I’ve been working on the x!@#$%^ thing all day!  First getting my computer set up took well over an hour because the activation process wasn’t working for me. I finally got that settled.  I then had internet, but Lynn’s computer didn’t.  Tonight I spent 2 hours on the phone with a guy from India (who was incredibly nice), but Lynn’s computer still doesn’t have an internet connection.  It’s connected to my modem, but the internet won’t come up. What’s with that?  I finally had to get off the phone. I have now hooked up a laptop for him to use, but it’s got such a small keyboard and monitor I don’t know that he can use it at all.


I share all this because of the effect it had on us.  I was so frustrated all day–torn between wanting to help him (so he could work on his book marketing and play music from YouTube), and I need to work or do things around the house.  He knew how upset I was, and that directly made him feel like a burden.  He had had a good day today.  He was able to do things in physical therapy and later, when he was exercising that he hasn’t been able to do in a while.  He was so excited, and all I could do was focus on the !@#$%^ computer.  My behavior stole his joy.  He was feeling so bad about being a burden to me that he was nearly in tears this afternoon. Then he recognized it was just Satan trying to steal his joy and undermine his progress so he would give up. Which also showed me that Satan was doing the same thing to me, so instead of seeing Lynn’s growth, I would focus on the difficulties.  What a shame. 


I wish I could say I’ve learned my lesson, but I know myself too well.  I can easily get overwhelmed and start to feel sorry for myself, and then I take it out on Lynn, letting him know how frustrated I am that he cannot do more and accusing him of not trying hard enough. He truly tries but with fatigue and spasms, and just plain ole MS complications, he can only do so much.

 

Lord, please forgive me of my attitude and self-pity and help me to appreciate the improvements and the successes.  And Lord, please give me an extra measure of peace in my spirit so that the frustrations of trying to work on his computer tomorrow won’t result in the same thing.  Amen.

My back hurts…

Caregivers are at great risk for back injuries due to not using proper body mechanics in moving family members correctly.
 

Actually, it’s my side.  I tried a patient lift, but it didn’t work with Lynn’s wheelchair.  I know the one that I would like to get–it’s a modified version of what we used in the hospital–but it’s over $3000 because it’s not provided by our insurance company.  So I lift Lynn myself.  He now weighs 215 lbs.  That’s a lot to lift.  I’m no small person either. I weigh about 180 lbs, which is probably part of the problem.  If I were in shape and lost about 50 lbs., I would have more energy and more flexibility, however; as my doctor explained, losing weight is difficult when you’re under a lot of stress.  My body thinks it needs to store fat so that I’ll have the necessary energy to fight off what’s causing the stress.


I also admit I have no will power right now.  To think about counting calories or watching portions is just more than I can face.  I eat to keep up the energy, and I grab what’s easy.  I try to keep sweets out of the house, but I snack on nuts and bars and whatever I can find that I can eat while I work. I’ve looked at weight loss ads, but I’m afraid of that plus I have a lot of sensitivities to foods of it’s just too much to think about right now.


I know I also need to exercise.  I sometimes get in a few  minutes of stretching to help my muscle spasms but to even carve out 30 minutes means either reducing sleep time or work time and if I reduce work time, I have to take vacation time and I need to store that up in case he gets sick and goes into the hospital again. What a roller coaster!


I worry though about these spasms I’m having so often from lifting.  I know one day I’ll probably pull something that won’t go back and then what will we do?  I’ll have no one to take care of either of us. Then what?  I have long-term care insurance to cover me, but Lynn already had MS when I had the opportunity to get it, so he wasn’t qualified.  Just one more thing to leave in God’s hands because I can’t worry about it right now.


For now, it’s 11:00 p.m.  I finished working at 10:30 and put a pre-made meal from a friend in the oven for dinner.  Thank the good Lord (and Amelia) for those meals.  I don’t know what I would do without them.  I’ve had some Advil and Lynn’s in his powerchair attached to his peddler for the night. Think I’ll go have something to eat…