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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/

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/

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.