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Caregiving and Work

The type of employment you have when you become an adult makes all the difference in how you live your life.  It dictates when you’re asleep or awake, what you wear, what you’ll be exposed to, the type of people you will encounter, and your standard of living (unless you are independently wealthy or someone else contributes to your income).  Though it’s possible to change some of these by changing where you work, the bottom line is that work plays a significant role in our lives. Besides the income we derive from being employed, many jobs also provide benefits, social interaction, a sense of accomplishment, ways to enhance our self worth through positive contributions, and an identity (while especially true for men, for many (but not all) women, it’s equally true). There’s a lot of positive to be said for working.
On the other hand, “work” can bring a source of conflict.  When you’re employed, your employer counts on you to be present, timely, focused, energetic, accurate, cooperative, cordial, and do your very best on their behalf at all times.  If they need you to switch up your hours, they expect you to be able to make any necessary personal adjustments to make that happen.  For most employers, (though they might not say it) they expect your job to come first.  Many say to their employees, “Leave your personal life at the door.  When you’re here, you should not be thinking about anything else but your job.”
Though working can be a good thing, being a caregiver and an employee are often in direct conflict with each other. For instance:
Employers expect employees to be at work and on time. That expectation is often difficult, if not impossible for a caregiver.  A caregiver needs to provide the following for him/her self and dependent prior to arriving at work:  grooming, dressing, toileting, feeding (preparing, feeding, and cleanup), oral hygiene, and preparations for the day—any one of which can lead to a delay beyond their control (clothing that gets soiled after dressing has occurred, toileting that takes twice as long as usual, food spilling on before-mentioned clothing, emotional breakdowns needing attention, equipment that does not work, etc.)  For myself, I have to plan to allow three hours for “us” to get ready if I’m going somewhere and I still find that my being on time can be unpredictable.
Employers expect their employees to be well-rested and energetic.  Caregivers often get as much sleep as is available between the time they finish up one day and start the next.  Dah, doesn’t everyone?  However, the amount of times to finish a day varies depending on their dependent’s needs on that day.  Sometimes they go to bed when planned; other times a load of laundry is unexpectedly needed and they’re up an extra hour or two.  Sleep time, for the caregiver, is also interrupted by the need to assist their dependent with comfort and bowel/bladder elimination during the night.  Therefore, well-rested probably means just enough sleep to be functional and the amount of energy they have is directly proportional to the amount of caffeine ingested and still in their system.
Employers need their employees to be focused and provide accurate and competent performance.  Being focused for a caregiver is a question of being focused on what?  The caregiver always has to be planning ahead to make sure he/she is ready for the next big event and is required to coordinate all their dependent’s activities and needs whether in their presence or if receiving assistance from someone else.  It is not uncommon that a caregiver would need to call a doctor or therapist while at work to discuss a new development, arrange for equipment or supplies to be repaired and/or delivered, or to talk to the secondary caregiver regarding a question or concern that has arisen.  Caregivers have to have the ability to have split personalities at all times because when at work they need to be able to address effectively their work duties while at the same time managing the life of their dependent. They, in fact, do have great talent at being focused but the need to switch focuses repeatedly is where the problem comes in.
continue reading at: http://multiplesclerosis.net/living-with-ms/caregiving-work/

Take Care of Myself? LOL

I read an interesting article on the Caregiver Space this week which has led me to think a lot of taking care of myself and why I don’t.  The article was called “6 Reasons Why Caregivers Don’t Self-Care (the way you’re telling us to)”  http://www.thecaregiverspace.org/blog/6-reasons-caregivers-dont-self-care-way-youre-telling-us/   It got right to the heart of why; at least for that person.  Of course, some of her reasons were not the same as some of the reasons I have but many were very similar.
Here’s my version of her same theme:
1.  Take a walk – As I’ve mentioned before, I work from home and one day a week (sometimes more) I go into the office.  On those days I usually have a lot of meetings to attend.  My office is about eight blocks from where those meetings usually occur so I walk there although I could wait on a transportation service that comes around regularly. I walk though because I never get outside except to walk the short distance to my mail box.  I enjoy the outdoors but if I go outside for any length of time I have to set up the baby monitor and constantly clean up to go back into the house to address what Lynn needs.  Therefore, getting into a major “dirty” project is not something I do often. Furthermore, I cannot walk any distance from my house since the baby monitor does not project that far.  If I want to go anywhere for more than 30 minutes, the concern is that he will need to be cathed and will have an accident if I can’t get to him promptly.  Therefore, I do not go for walks.
2.  Use a treadmill – I actually have a very nice treadmill in one of our rooms that Lynn used before his balance got bad.   I had every intention to start using it again because I realized as I walked up the hill to those meetings I mentioned above, I become quite winded.  So, I had my stepson clear me a path to the treadmill…I have not gotten on it yet.  What I’ve realized is that to use the treadmill requires prep time and cool down time plus dedicated time to walk.  Timing the ability to do that requires coordination of activities with Lynn’s bladder and other needs.  Also, I work seven days a week so that I can keep up with my office work since I have so many interruptions during the week.  Therefore, if I’m not doing necessary house things like cooking and cleaning, or necessary Lynn things, I’m working and I truly do not have a spare 30 minutes in there anywhere.
3.  Soak a hot bath – When you have so many things to be done in a short amount of time, relaxing in a hot bath does not seem to be a priority.  For me, I jump in the shower, maybe take a few extra seconds to enjoy the heat on my muscles but then it’s back out.  I shower with the door to the bathroom open so I can hear him if he needs something right away.  My first stop (often before fully dry) is to check on him and often he’s calling for attention before I can do that.
4.  Hire help – yeah right.  Most people assume caregiver professional help is paid by insurance.  Wrong!  It’s not covered by insurance and it’s not cheap.  Plus you have to orient whomever comes over to his “routine” and you need to be vigilant that they are performing their duties as specified.  I would love to have paid help though but I already have so much debt related to buying the things he needs to feel better that I have no extra income.
5. Help from family and friends – we are blessed to have many kind and loving family and friends who help us out.  I truly don’t know what I would do without them.  One such angel just left my house after cutting the grass, weed-eating, and cleaning up leaves. All this he does without being asked.  He just shows up, does the work, and leaves without a word.  He didn’t even come into the house today because he might have shingles and didn’t want to expose us.  See what an angel he is? We have many such angels in our lives and their love and assistance helps me to manage all the chores and care needs I have that take me away from being available to Lynn.  I truly don’t know how those of you who do not have this support make it.
6. Get plenty of sleep – LOL.  How I wish that was possible.  On average, I get 5-6 hours a night–occasionally less (usually when I have to go into work); rarely more (maybe on a weekend if we don’t have someone coming over to help us with something).  I usually get to bed between 2-3 a.m.  I get up most days between 8 and 9; however, I usually am up twice during the night with caregiver duties so I’m always sleepy; always tired.  I survive on caffeine – either pill form or coffee.  I can’t always drink the amount of coffee I need due to stomach irritation but I’ve found caffeine pills help. I try to limit using them until I have to drive but I am honestly dangerous on the road much of the time without them.  I get so sleepy driving that I fear I’ll have an accident.  There are times every day around 4 pm. that I truly cannot keep my eyes open and they shut on their own.  If I’m driving home from work at that time, after 10 minutes on the road, I catch myself nodding off so I have to stop for coffee or something to eat if I don’t use the pills.  Yeah, I know I shouldn’t but when you weigh car accident vs. effects of caffeine over time; caffeine wins.
7.  Keep your weight under control – See #6.  I eat to stay awake; to give me the energy to go on.  I eat whatever I can eat cold and fast.  I don’t have time to cook for myself because my cooking time is devoted to making Lynn’s special meals. If I eat his stuff, I have to spend more time in the kitchen which means I have less time for my job and need to work more on the weekend to make up the time.  So I eat already prepared things.  Most are high calories unfortunately.  Okay, I admit, that’s also an excuse.  It’s one of the ways I pamper myself and I admit I use it as self-indulgence.  So…come on stretch pants.
Since I’ve started writing this blog, I’ve been interrupted three times and been pulled away at least 15-30 minutes each time.  That’s why I can’t do anything for myself.  That’s my real “why”.  Self-care takes times and time is not something a caregiver has.  So I do a little snacking, listen to an audiobook, and catch a 5 minute snooze to keep going and call that self-care, Donna style.

Who Am I?

Looking outside, I see some new orange and yellow colors where last week I saw green.  There is a sporadic fluttering of leaves cascading in front of the window on their way to cover my yard. The air is crisp causing me to need to turn on heat this morning so Lynn would not be too cold today.  It seems that summer is definitely over.
Working from home now so that I can care for Lynn, I find it hard to really be part of the seasonal changes.  I wear the same scrub suites all year.  I am only outside a very few minutes at a time usually so I can always be in earshot of Lynn’s call for help or need to be catheterized so the usual changes in temperature do not trigger time moving on like it did when I went into work each day.  Therefore, it seems at times as if I am a spectator to life rather than participating in the changes.  I find it difficult to “know” instinctually what month it is.
I think about when I worked as a nurse years ago, I used to ask patients, “what is your name, what month is it, and who is the president?”  Honestly, there are times I think the only one I could answer correctly is my name! My world is focused on keeping up with my daily demands moving between being a caregiver to an employee within minutes of each other and that transition occurring hundreds of time a week.  After a while I’m so focused on trying to stay in the “here and now” that I am not aware of what’s going on around me.
Lynn listens to Fox news in the morning so I usually hear a little about what’s happening in the world as I assist him in his morning routine but after that, I rarely know what’s happening outside of my small world unless a family member emails me a question or shares a comment.  I have to consciously strive to stay in the “here and now” both at home and in the world around me.  It’s very tempting to just stay in my little world.  I have plenty to do to keep me occupied if I did that.  But….is that the right thing to do?  I have to say, “not.”
It’s easy to become isolated when you are so busy caring for one person; after all, they are the center of your world. When that happens, however, I think that the “person” gets lost in the process.  It takes extra effort but keep establishing my “personhood” apart from caregiving responsibilities but I think it’s important to do so. I “lost” myself in my first marriage changing who I was and what I liked to be accepted and to try to save that relationship.  I’m a “people-pleaser” by nature and it’s difficult for me to not just allow myself to blend in and go along with the crowd. But when I did that, as in my first marriage, once that relationship ended, I didn’t know who “I” really was.
When you give and give and give and set aside your own wants and needs, you tend to cope with the necessity of putting others first, by repressing your own inner desires and enjoyments.  But then if the relationship ends either through divorce, death, or just separation as people go in different directions, what do you have left?  Sometimes, it’s not so clear. I remember a counselor asking me during the early days of my divorce what I liked to do and I honestly did not know.  It had been so long since I had done anything just for my own enjoyment (other than read occasionally) that I had no idea what I might want to do for entertainment that I would do with others.  It took me awhile to find “me” again; so I’m trying not to let that happen this time around.
That’s why I write this blog, to assert who I am and how “I’M” affected by this role. It’s why last week even though I needed to do so much at home, when my daughter said, “let’s get away,” I said, “yes,” instead of, “another time.”  It takes a lot more effort to get away than it would seem. Something always has to give when you do, but I think it’s also important to remember to let who you are get free at times from being overshadowed by caring for others. Most likely, one day, I will not be a caregiver any longer and when that happens, I will need to know who I am so that I have “someone” to fall into.  When that happens, I want that “someone” to be a friend; not a stranger.

Wanted: Caregiver Ten Hours a Day

I needed to go into work on Monday.  I was supposed to be meeting someone at 12:30 so I had to leave by 11 (an hour to get to work, 30 minutes to walk to the  location of the meeting and time to prepare for the meeting).  To leave by 11, I have to allow three hours preparation time at least.  To leave, I don’t necessarily have to have someone here but Lynn has to be out of the bed and “set up” for both comfort and safety.  Therefore, to get to work to attend a meeting at 12:30, I need to be out of bed to start by day 4 1/2 hours before the time I need to be there.
Because I come on site only one day a week, I usually set up back to back meetings for while I’m there.  It also never fails that when people see me in the halls, they stop and ask my advice on whatever is happening in their area at that time (that’s my job essentially; I give advice).  I usually take some type of ready-made lunch bar as my lunch to chow down as I walk between meetings.  The entire time I’m on site, I’m watching my time knowing that on my way home, I have to stop and get groceries while I’m “in town” and whomever I’ve asked to stay with Lynn is usually anxious to get back to their lives.
It’s almost always the case that I’m running late.  Lynn always needs several “just one things.”  My relief usually walks in the door as I’m trying to walk out so I get no help getting out the door.  Once I’m at work, I always have at least one or two, “have you got a minute?” requests.  Then grocery shopping always takes longer than I think and I almost always need to add a stop of two (library, post office, another store).  Therefore, I’m always late and always feeling guilty for being late.
Monday it really got to me.  I ticked someone off at work before I ever got there about a class I was supposed to teach and didn’t want to because the registration was only for one person.  I finally said I would teach it but they had arranged for someone else to cover for me and that someone was annoyed when I said I would take the class over after all since she had spent her weekend re-doing my slides.  I felt so guilty for having her cover for me that I cried all the way into work.  Then I went to her office to apologize for her being asked to do my class and I cried again. I hate for anyone to do my work for me! I don’t want people to think I’m slacking off and I know that because I work from home, people think that I’m not doing my job as well.They don’t say that to my face; on the contrary they tell me how amazed they are at what I get done; but I see  the looks.  I know the tone of voice.  I know when I’m not told about things that I SHOULD be told about and when I’m not included in things that I should be included in deciding.  I also know what is usually said about people who work from home–Are they really working all the hours required?  Can they be counted on?  Are they really meeting the expectations of the job? Should they be required to come back into the office?
That last question is the big one for me.  I would love to be able to work from the office and escape from being a caregiver/full-time worker every day.  However, I know that if I was required to come into the office, I would probably have to find a way to quit.  On my salary alone, we could not afford a 24-7 caregiver for him.  I also know that if I took over his care when I got home that with all I would have to do between arrival and departure the next morning, I would get even less sleep than I do now which is on average only six hours a night.  Driving would not be safe; physically I could not keep up.  Plus if Lynn had to use a foley every day and still used the peddler as much as he does now, he would get a urinary track infection from the trauma of the constant movement.  His last UTI landed him in the hospital for three months due to various complications.  I don’t want to go there.
So I decided to hire a care giver one day a week for 8-10 hours a day to arrive an hour before I had to leave and to stay long enough for me to do all I needed to do.  I wanted an employee.  Someone I could give instructions to and who would do all I asked because he/she was being paid to do so.  Someone that was a stranger so he/she could help Lynn with hygiene and tolieting issues without embarrassment to either.  I told Lynn what all I wanted this person to do … and he asked his son to do it.
Don’t get me wrong.  His son is awesome about helping me out but he has a new job that is already making it difficult for him to be here as often as I need him.  Plus Lynn doesn’t want him doing as many personal things for him because he doesn’t want to embarrass him or make him feel overly burdened.  I know Lynn was trying to help out and I know he would feel more comfortable with his son than anyone else but now I don’t think my goals for what I need will be met. I’m going to see how it works and plan to request of him all that I would have requested from a paid caregiver just to see, but I’m not confident.
Keep your fingers crossed for us!

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.

Why is Getting Help so Hard to do?

Ever since Lynn became totally disabled, I’ve had lots of encouragement to get some help.  I know I need help.  My muscles hurt from over use; I get frustrated trying to do everything I need to do; I know that there is a high risk as a caregiver that I will have a shorter lifespan.  So why don’t I just get some help?
I’ve heard from several of you the answer to that question because you have already struggled to make that decision and you encourage me to do the right thing for both myself and Lynn. So why don’t I just get some help?
Protection – Just like a mother lion protects her cub, we caregivers protect the person we give care to.  There is usually a connection with the person both of emotion and responsibility.  As a spouse, I love Lynn and want his every need to be met to his satisfaction, if possible.  As his spouse, I promised to love, honor, and obey in sickness and in health, etc. so I also feel a sense of responsibility.  Rationally, I know that promise does not mean I have to provide the care but there is a commitment and emotional piece that leads me to want to put his needs first before my own.  I also know that I know him better than anyone; what he likes, how he likes it, when he likes it, etc.  I know that any caregiver we hired would not likely be as attentive to him as I am.  Would that person catch signs of distress or illness soon enough to prevent more harm? Lots of “what ifs?”
Selfishness – This is a bazaar one but selfishly I like being recognized for how well I care for him.  Pretty sick, right?  I like to hear compliments about how well he’s cared for and to feel appreciation from family members for “my sacrifices.”  I also have somewhat of a martyr complex for some sick reason.  I find self-worth in sacrificing for others so there is some secondary gain in what I do as well.  Plus I rather like working from home in scrubs rather than putting on makeup and going into work (at least some of the time anyway.)
Financial – This is a big one.  Lynn gets basic social security benefits–hardly more than he took home every two weeks–so my salary is the primary salary.  I make a good salary for the work I do so I’m very blessed in that respect but I’ve run up a lot of credit card bills buying things to make our life easier, medicines, supplies, nutritional supplements, equipment, etc.  All that stuff is expensive and I also had children getting married, unemployed and needing help, going to college, etc.  All that cost adds up.  I don’t have spare money that could cover much in the way of daily care.  I know I need to carve out some income in that direction and over the last year, I’ve managed to pay off some of those bills but buying the wheelchair accessible van and saving to build a new house doesn’t leave much to use. Another consideration is that insurance doesn’t pay for home caregiving, plus I live in a very rural area so resources are limited. 
Lynn’s insecurities – He’s afraid for me to not be here.  He knows that I’ve “saved his life” several times by noticing changes in this condition and getting the help he needed sooner than later.  He knows I will find ways to make what he needs happen and quite frankly, the thought of having a stranger around all the time is not a welcome thought.  What do you do with a paid caregiver when Lynn doesn’t need anything at the time? Do they sit in the room with him and watch TV?  That’s like having a guest around all the time and we’re just not that used to having company.
Then there’s the safety issue.  Criminal background checks, how well does the caregiver know their job, do they lift safely, will they be patient and nice or mean and abusing? 
So much to consider….It’s not easy to take that step even when you know it’s something you really need to do.  I’m getting closer but I’m still not there yet…but it’s only a matter of time.  Pray for me that I’ll get there and find a way to make it work.  Thanks for all the words of encouragement and support.  It really helps.

Adjusting to being less than the best

I received my annual performance review today.  I had mentally prepared myself for getting a rating less than what I usually get and was even afraid it might be significantly less but I was pleased…and disappointed…and sad…and concerned. 
Not to brag but I’m very good at my job.  Several years ago I was nominated and received the Employee of the Year award.  We had about 7000 employees then so that was a real honor.  Every year for at least the last ten, if not longer, I’ve gotten an exceptional overall rating.  This year I didn’t.  It was still good, better than just proficient, and even still had some exceptional ratings listed, but it was sad to see my performance decline in writing.
Don’t get me wrong.  I’m not complaining at all about the rating.  It was very fair and probably more than a little generous.  I hold a significant position where I work.  I have a lot of influence and a lot of people come to me for advise…or at least I had and they did.  Now I work remotely every day.  Though I try to keep involved and keep up with everything, the truth is my staff have had to cover meetings for me and are now contacted more often than I am.  People who know me want to spare me anymore stress so they go to someone else.  That’s very kind of them but I’m still working and if no one needs me anymore, I’ll become a liability instead of an asset. I can’t let that happen because I have to work and I have to keep the salary I have now. One of my greatest fears is “out of sight; out of mind,” and my other is “I need you to come back to work at your office.”
I wouldn’t mind being back at work.  I love my job.  It’s very demanding but I find it very rewarding. I really like working to find solutions and knowing what’s going on. I find that working from home, I’m losing that.  I don’t feel connected and there is so much that I am not told about that I would find out in hallway discussions. I see this lower rating as the recognition that I’m not needed as much anymore. I expect that if I continue to work from home, they will find a way to move me out of my job into something else….something not as essential…and something that would be unique and therefore, something to cut if times got tough.  Less job security on the horizon.
So what can I do about it?  Go back to work in my office.  But what if I do that; what does that mean?  It means less sleep since I would have to get up early to get Lynn ready for whomever what going to care for him while I was away.  I’m sure I would not be getting to bed any earlier.  It would mean greater difficulty getting everything done at work that I needed and everything done at home.  Lynn would be very unhappy because no one would pamper him like I do or at least that’s what I suspect because he’s very needy and very particular about how things are done. He doesn’t want anyone here that he would have to entertain as a guest and he doesn’t want anyone he knows well to have to do any of the personal things for him that are needed.  If I had a “sitter” then I would have to put in an indwelling urinary catheter while I was away every day.  I had to do that two days in a row a few weeks ago and he got a urinary track infection from the irritation. So would his condition deteriorate?  If I wasn’t here to straight cath him, to put him to bed when he’s tired, to make sure he gets what he needs to eat and drink, to monitor his medications and to take care of his skin, how long would he last?
So what do I give up?  I give up the exceptional rating on my evaluation, the recognition for a job well done, the interactions with others, the rewards of helping others, the job security, and the challenges of learning new things.  I give up a lot and it hurts but I signed up for better or for worse.  I made a commitment to God and Lynn that I don’t take lightly.  I want to give Lynn the best I have to offer and I want to make his life better than it would be if I wasn’t here to care for him.  So I give up being exceptional at work and I focus on being exceptional at home and hope that somehow it will all balance out. 
For now, it’s the right thing to do…but I admit that I’m just a little sad.