This Distance Caregiver Thing

I may not be cut out to be a personal caregiver.  After 3 decades of working as a healthcare professional and caring for a thousand or more adults over my career, you would think that this would come easy for me.  It is not.

It’s one thing to work with up to twenty different personalities in a single day for 30 to 60 minutes at a time, trying to facilitate a therapeutic experience that is meaningful for the person and billable to his or her insurance company.  I learned to quickly develop a rapport with each individual, turn our focus to the therapy evaluation and treatment process, and wrap it all up with a plan for the next session or discharge.  Often the most challenging patients were put on my schedule because of my experience working in mental health settings and with persons diagnosed with dementia.  Many were depressed, angry, resistant, unable to focus for more than a brief moment, or simply were not coherent at all.  I would often have to come back to a person’s room several times a day or miss my own lunch break to facilitate a feeding session during his or her mealtime while my tummy growled.  There were the difficult families, co-therapists who would “steal” your patient throwing off your schedule, the CNAs who wouldn’t bring the client to the clinic, or the patient who almost always needed a diaper change before we could fit in any therapeutic activities.  Standing tolerance, functional transfers, and self care were easy goals to fit in when the nursing staff just couldn’t fit in the care needs of their residents; occupational therapy gotter done.  I wiped a lot of bums in the process.

It’s another thing to try to help an aging family member 1,000 miles away with a range of personality, behavioral, cognitive, and early physical changes.  I am having difficulty managing the frustration of dealing with a person who can make decisions one day and not the next, seem to engage in manipulation/pity partying/whining then be as sweet as sugar, ruminate on minute details for hours, and complain more than converse about most everything else.  She has changed this past year for sure then other times she seems just like her old self.  I just didn’t see some of these more difficult characteristics before this year and before I understood that the diagnosis of a brain disease has made everything in her life more complicated.  Of course she wants to make her own decisions and we agree.  Of course it is hard even a year after diagnosis to accept that she is having problems and needs help.  And when depression, anxiety, and compulsive tendencies take over, it is nearly impossible to help her to keep moving forward.  I just don’t know what to say or do sometimes.

I could do nothing.  My husband and I could do nothing.  Instead we have offered to help and have devoted probably 100 hours of such thus far.  She has asked to stay with us this summer then backpedaled when picking apart every detail of the visit that will not be perfect, problem that will not be solved in the way she would like.  I am sorry.  We just cannot move across country to cater to your every need in sunny Florida my dear!  There are always limitations to what any caregiver, professional or family member, can do for a person in need.  We will likely continue to help her and have started to set some boundaries too.  I am still in recovery from a serious illness and, while I can do more than when I first discovered her illness just 3 months ago, there are limits.  Should she come she will have to contribute some financially and is reluctant to do so.  She will need to follow the routines of our household and is reluctant to do so.  She will need to leave a tropical climate for the ravages of the four seasons in the Midwest and is reluctant to do so.  She wants to see what it would be like to live with us but isn’t sure she wants to come for a visit.  Whatcha gonna do lady?

Tonight I am frustrated.  The Lord has set me on a path to healing with a trip to a medical specialist that happened to reside in a town near my beloved family member out of state.  It seemed to be providential that I would spend some time caring for her as I could when in town for medical visits.  We prepared for each trip for many hours on the phone and followed up for many more thereafter.  I helped her with 2 day-long projects in-person with great physical consequences for me after the last time I was in her town:  travelling alone for the first time in over a decade and only 5 weeks into recovery from a new treatment that is working!  Geez oh man.  I just don’t know how much more I can do until I am further along in my healing process.

The stress of caring for my beloved family member, even at a distance, is weighing heavily on my heart and frame tonight.  I know I am called to help her some.  The amount is unclear for every time I set a boundary there is push-back.  My ability to manage stress has changed since battling a serious illness  for over six years.   I am saying no, making things as clear as I can.  My hubby wants to accommodate her this summer (and permanently if desired) as best we can yet to do so could create some financial and scheduling chaos.  My beloved family member is not yet willing to consider some things that we see need to be done for her personal protection and safety long-term.  We understand that these are big decisions.  However, waiting seems to just foster more indecision on her part, more stress on our part as her potential caregivers.  Dear Lord, what shall we do?

We are grieved that my family member has strained relationships with several family members who are not fully ready to attend to all that is needed to care for her.  She hasn’t been able to talk directly with them yet which puts us in an awkward situation with them should she have us proceed in our role as caregivers.  We are grieved for the sorrows that her and her children have endured trying to make sense of the heartaches in their pasts and how it strains their relationships today.  Conversely, I have only good memories with my family member so I’d like to think that I am a little more level-headed in honoring her wants and needs.  Who knows?  It is still hard to care for her varying emotional states on a daily basis.  Good golly, why still struggle when there are two people who love you, seem to care about you the most right now, and are willing to invest their time and energies in doing so?  Help us out here my dear:  will you be spending the summer with us or not?  Will we be making some major purchases to help make the visit more comfortable for all of us or not?  I do hope we know the answers to these questions in a couple of days.  This distance caregiver thing is running me ragged!

Stay tuned, Gentle Reader.  We are praying for guidance, peace, and the same for our family.  Let’s all take a deep breath and take care, k?  JJ

Just ‘Cause You’re Sick Doesn’t Mean You Can’t…..

Some great insights from a fellow sojourner who is near to the side of recovery from Lyme disease. Perhaps I can add making jewelry? :J

My Color Is Lyme

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Yes you are in bed most of the time. Yes you feel like that possum that got hit by the truck. Yes you are kind of stuck and down in the dumps. You can’t do most of the things you want to do, so it is easy to get depressed, feel worthless and a burden on society. We’ve all been there, no matter what point in our illness we are in right now.

So since it is so easy to focus on the “can’ts” (which lead to feeling worthless), here are some “can’s” you can do right from your bed. And please don’t put these ideas down as cheesy, maybe some are but it’s the little things that sometimes make the day brighter.

 

Image1. Write Thank You Cards “just because”. Are there people in your life that you love and appreciate? How good would it feel to surprise them…

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A New Project to Keep Me Sane

An idea for a new project has come to mind so when I’m not here, I’m brain-dumping in Microsoft Word.  The topic:  helping others with chronic illness with the day-to-day practical barriers to living.

My career in occupational therapy included evaluating the daily “occupations” in the lives of my patients and the skills he or she needed to get through the day.  Occupations can include homemaking, pre-driving skills, functioning on the job, and more.  When the person was unable to complete the steps, tasks, and activities needed to perform those daily occupations then O.T. was offered.  Treatment began during an inpatient hospital or rehabilitation facility stay and continued in outpatient or home care therapy sessions.  I have had the privilege of working in all of these settings.  My favorite was always home care.  When you are working with a patient in their own living situation, the evaluation is often more accurate and the remediation more meaningful.   This was my part time work when I became sick on October 11, 2011.  Within a few months I was unable to continue.  Since then the remediation has focused on my own home and health!

I am grateful for my 30 years in occupational therapy practice.  The Lord led me to a profession as a high school graduate that would provide a fulfilling career my entire adult life.  I enjoyed serving others in both psychiatric and physical rehabilitation settings, with adolescents to older adults alike.  I have been with a patient just moments before she passed away and another when he realized that his disabilities would be permanent.  To look into the eyes of someone about to lose their independence because of his medical condition and another who needs a little nudge to realize she is ready to return to work are equally humbling experiences.  And these days when I look into the mirror, I have some of those same discussions in mind as I consider the challenges of my own life these days.  Gratefully, I have a rich variety of experiences and resources upon which to draw.  In many ways I have not had to struggle as much as my patients because of my training as an OT.

For example, I intuitively know the importance of planning ahead in the evening for the next morning.  If I wake up with seizure attacks and my husband is alone, I generally have a plan in place to meet my basic needs in case I would be unable to leave the bedroom.  The night before, I usually pack a breakfast with my a.m. medications, enough water and food (following my special diet) to make it through the first part of the day.  Low blood sugar can exacerbate my symptoms so this strategy has become one of numerous methods employed to cope with my limitations of late.  I am grateful to the Lord for the skills He has giving me, His help in my time of need, and His leading me to a profession that has allowed me to cope through many trials in my life.

So why don’t I see what I can do to help others with this knowledge?  When I did a preliminary search on coping strategies, I found a great deal of resources on the topics of emotional, psychological, and social skills for persons with chronic illness.  This was a great discovery and I benefitted from reviewing these blogs, articles, book reviews, and so on.  But where were the day-to-day strategies for example, in preventing falls when dizzy because of a medication side effect?  In my role as an OT, I could point to many disease-specific organizations that might have such resources, for example the Alzheimer’s Association or Multiple Sclerosis Society.  This information is also easy to find within the disability community.  But what about a person with Lyme disease?  Sick building syndrome?  A temporary illness?  Persons with a serious, multi-diagnosis, ongoing illness numbers in the hundreds of thousands or more.  I see them on Facebook forums, WebMD, and the like.  I would like them to know that there are simple strategies to reduce their daily struggles, improve their ability to function, and in doing so also keep myself sane while on the path to healing.

We have a saying within the therapy profession that goes like this, “therapist, heal thyself.”  While this is not entirely true, certainly a therapist can do pretty well at rallying some resources to get the healing process going.  My hope is that by sharing some practical information with others I will not only keep myself sane as I write but also gear myself up for returning to a productive life someday soon.  The complications of my own illness make it difficult to concentrate, use various thinking skills after several episodes per day.  The challenge of writing, editing, researching, and publishing my first eBook did help fire some neurons in a meaningful sequence here and there!  I’m thinking I’ll try it again.

If this resonates with you, please let me know what you would like to see in such a handbook.  The current outline begins with the morning of a typical day and continues through all of the activities of daily living until bedtime.  I will include information on fall and injury prevention with references for sample adaptive equipment, such as a sliding tub transfer bench or automatic night lights.  Many of us will be familiar with parts of the information.  My hope is that by systematically reviewing a person’s typical home environment that there will be new insights:  a little something for everyone and his or her caregivers.  I have seen the power of a simple strategy in making the day a little brighter in the life of a person battling a serious illness.  Maybe this will even lead to a forum where there will be an exchange of information as well.  I am looking forward to the possibilities . . .