Category: <span>Caring for Yourself</span>

Published December 30, 2010 by

Wishful Thinking: What If It Were Not Multiple Sclerosis?

It’s an odd thing I sometimes consider. (Trust me, I’m not crazy) – but once or twice a year I wonder, what if the neurologists are wrong? What if my wife doesn’t have Multiple Sclerosis? What if she has something that looks like MS but isn’t as bad?

I know it’s wishful thinking. And I know why I wonder. I so want her MS to be something else – something that has a cure. Something that isn’t “progressive” (and isn’t that such a sadly ironic word for a disease).

When I first start to wonder, I find it easy to feel hopeful. MS is one of those odd diseases that seems to take forever to diagnose. It took a lot of visits to doctors and a lot of tests to get a firm diagnosis. The diagnostic process sets one up for doubt.

On the other hand, take a normal health problem.

If you break a bone, you usually remember exactly how it happened. You go to the ER and the doctor looks at your arm and says, “looks like you’ve broken your arm.” Or maybe the diagnosis requires an X-ray. The doctor pops it on the light board, looks at it and says, “yep, look here, you’ve broken your arm, here’s a cast, you’ll heal just fine.”

MS is so unlike that.

When we were told the diagnosis, I told the doctor, “I don’t think that’s it. What else could it be?”

It was a desperate question. “What else could it be?” At the time, I was aware of only one person who had MS. He had been in a wheelchair for years.

Even now, ten years later, I still find myself asking, what else could it be? And after a decade of asking, I see the symptoms, I re-read the lab reports, and I know the truth. It’s MS.

I’ve not talked to anyone about this wishful thinking because it seems irrational. I have a logical mind. I have the evidence and it’s conclusive. Yet some part of me hangs on to the impossible chance that after a visit to her neurologist, the doctor will report with a smile, “Wait, we’ve been wrong! It’s not MS! It’s disease X, Y or Z and it has a cure!”

In case you’ve wondered – and I imagine there are MS caregivers who find themselves wondering as I occasionally do – I’ll share a link to an article on diagnosing Multiple Sclerosis and how other diseases are ruled out through something called differential diagnosis. It serves as a useful anchor to medical reality for me.

Accessing the article requires that you register for a free subscription to the online “Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology“. You will be prompted to login or register. The article is “MAKING THE DIAGNOSIS OF MULTIPLE SCLEROSIS” by Dr. J. Palace.

When you find yourself wondering about the diagnosis, you have a few options:

1) You can ignore the wondering. However, if you do, it will always be there in the back of your mind. It’s better to address it.

2) You can always talk with the doctor and ask her or him to walk you through the diagnostic information again.

3) And finally, if you already have the irrefutable evidence and just wonder as I occasionally do, call it what it is: wishful thinking. Everyone is entitled to a little wishful thinking every once in a while.

However, avoid letting your wishful thinking distract you from reality. Reality is where you must live, move and have your being. MS is what it is. You’re a caregiver, so take good care.

(As an aside, if you’re interested in reading about research into MS, the free subscription to the online “Journal of Neurology, Neurosurgery & Psychiatry with Practical Neurology” is a great deal. The journal articles and study results are excellent.)

Caring for Yourself MS Caregiving MS Diagnosis MS Research

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Published December 21, 2010 by

Managing Christmas Melancholy

Driving past a neighbor’s last week I saw him and his wife setting up Christmas decorations in their yard. The lights around the edge of the house had been put in place the week before. These decorations were the large figures that sit on the ground and are lit up at night.

Later that evening as I drove by again I saw their yard with the lights on and it was all that they should be – festive, pretty, and exciting for children. He and his wife decorated their yard together.

As I pulled into my driveway and looked at my house without Christmas lights or yard ornaments, the little voice that tries to help me feel better about what I’m unable to accomplish whispered, “you cannot do everything.”

And after several years, I have grown to accept that there are things that I must do alone if they are going to be done. There’s not a lot of joy in hanging Christmas decorations alone in the yard – so I don’t.

But my neighbor’s festive lights turned on a little Christmas melancholy for me.

A few days ago my wife remembered aloud that when our daughters were small she took them to the mall and pushed them through the Christmas-shopping crowds in their stroller. She looked forward to Christmas shopping with them when they were teens – three females having fun laughing through the mall together. That she can’t do with our girls what she once looked forward to doing now casts a shade of Christmas melancholy.

For many reasons, Christmas is the holiday that has the reputation of being an emotional minefield. Elvis sang, “Blue Christmas”, about the sadness of Christmas without a loved one. Newspapers often run a December article about holiday depression. The shorter days and less sunlight are related to Seasonal Affective Disorder aka S.A.D. (Has there ever been a less hopeful name for an emotional disorder?) SAD is a form of depression caused by seasonal changes and seems to be related to loss of sunshine.

Christmas is at the year’s end when most of us are looking back and evaluating the previous 12 months. If we’ve not accomplished what we intended we may feel regret. More powerfully, if we’ve lost a loved one, the holiday season is a time of remembering and consequently, sadness.

For many multiple sclerosis caregivers, Christmas seems an unnecessary complication.

Comfortable routines are changed because of festivities. In addition to the usual full load of making life happen well, additional responsibilities arise like decorating, preparing for parties, buying presents, wrapping presents, scheduling visits with family so that no one is neglected, cooking, finding money for presents. And of course, one has to have a good time doing all of this or they’re being a Scrooge!

If I ever do hide in the woods and become a hermit, Christmas is the holiday that will force it!

A friend has a two-word phrase he uses for times like this, “man cave”. He has one and he uses it.

What To Do When You Want to Hide in the Woods

You know as well as I do, MS caregivers cannot become hermits or hide in caves. So what’s a caregiver to do about holiday chaos? I’ll share what works for me.

1. Have reasonable expectations. Don’t expect your family to sing “The Hallelujah Chorus” together on Christmas morning if none of you can carry a tune. Don’t expect everyone to be happy with the present you give them. In fact, be reasonable! Expect that someone will not be pleased. When it happens, you’re prepared. If it doesn’t, you get the pleasant surprise.

Don’t expect a “perfect” anything. It’s not going to happen. The holidays are about people who are all imperfect.

2. Make certain you have holiday time for yourself. This one is difficult. It will feel selfish, but the only way you can be fully present for another is if you are fully present for yourself. You can only give another the parts of yourself that are available. If you do not occasionally find time to recreate your sense of self during the holidays, you’ll miss yourself and others will too!

3. Acknowledge emotions. You cannot avoid them. All of the anniversaries of life that occur each year tie us to the past. The holidays are an annual celebration with ties to previous years. You’ll remember family who are no longer with you, friends from whom you are separated, plans that have not been accomplished. All of these are real and present. Acknowledge the emotions you have about them. Emotional energy spent trying to avoid remembering can be better spent facing the memories and being thankful that loved ones and friends from the past were a part of who you have become.

4. Focus. Make choices about what is important. If you’ve ever used an old 35mm SLR camera which had depth-of-field preview focusing with a fast lens, you’ll quickly understand the image. Only certain things can truly be “in focus”. Everything outside of the field of focus is blurry. The photographer chooses what in the scene will be perfectly in focus. All else will be present, but out of focus.

As a caregiver, choose what you wish to focus on during the holidays. Everything else will be there, but at any given time, you can choose what you will make the object of your focus.

5. Remember the historically spiritual nature of the holiday season. Spirituality is, of course, a personal matter. So contemplate the meaning and value this season has held for you in the past.

In the middle of any current chaos, most of us have a bedrock of faith we rest upon – more or less. For me it is this, “‘Behold! The virgin will conceive in her womb and will bear a son, and they will call His name Emmanuel’ (which translated is, God with us).” I cannot explain what ‘God with us’ means because the experience lies deep on the bedrock of my faith in the realm of the ineffable.

But without doubt, I know the experience is real. When I’m running around trying to keep up the family traditions and do all that’s required to make sure all gets done, I know hidden beneath the chaos, there is one truth: Emmanuel, God with us.

Caring for Yourself MS Caregiving Practical Tips

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Published December 21, 2010 by

Thanks for Helping Each Other!

Readers of the Multiple Sclerosis Caregiving blog make comments that can usually be separated into just a few subjects related to caregiving: 1) shock at an MS diagnosis, 2) concern about the future and worry about how difficult caregiving will be, 3) questions about a particular aspect of caregiving, and 4) support for another reader.

I wrote in my initial post, I’m an MS Caregiver, “My goal for this blog is that it become a helpful resource for other MS Caregivers. I hope you can use what I share to improve your own life. And in making the caregiving lifestyle easier for you, I believe it will be easier for you to be more helpful to the one for whom you care.”

That fourth subject, “support for another reader”, is the one that has become a very pleasant surprise. That MS Caregivers spontaneously help each other, share insights and tips, and offer emotional support to each other has become the part of this blog I enjoy the most. Thanks for helping other MS Caregivers!

Caring for Yourself MS Caregiving Reasons for Hope

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Published October 7, 2010 by

Too Many Blessings and Not Enough Time!

When my daughters were smaller I loved to play with them in our yard. Some of my favorite memories are of them running barefoot through the green grass in their pajamas early on a cool, Spring morning. Running so fast their long hair flowing behind, grinning from ear to ear, their eyes shining with delight, giggling with joy.


Finally, worn out from the play, we would collapse in the cool grass. Our yard had the greenest, thickest, lushest grass. Writing this, my heart smiles. I still hear their happy giggles as we chased each other in circles.

I built my daughters a huge swing set, 12 feet high and facing the rising moon so we could watch it peek over the trees at night. Well built, it will be there for my grandchildren.

I built my wife a pergola and planted New Dawn roses around it. Within a year, the pergola was covered with pink roses and green foliage. A moon vine grew up the pergola’s front posts.

Flowers bloomed around the shrubs in the front flower beds. And I had a healthy compost pile. I planted a garden and grew tomotos and cantelopes. The deer nibbled the beans. A pumpkin grew from the edge of the compost pile each year and the vines spread for fifty feet. Each October we had our own great pumpkin for Halloween.

My yard’s not all that anymore. The garden is gone, the compost pile is gone, flowers no longer bloom around the shrubs. The pergola is too far from the house for my wife to enjoy it often enough.

When my wife and I bought our house we quickly struck a deal that delighted us both. The outside was mine to care for and the inside of the house was hers to decorate. That worked well for a few years and we both enjoyed the bargain.

It’s about Priorities

Being a caregiver is much about priorities. Each of us has 24 hours in a day and we decide each day how we will invest those hours. The yard has declined a bit. I gave it to God. If it dies, it’s His fault for not watering His grass!

This Summer’s drought was hard on the grass because I didn’t have time to water the lawn. And that’s okay because if it had grown lush, I wouldn’t have had time to mow it as I once did. I don’t plant zinnias in the Spring or pansies in the Fall. One of my pink dogwoods died this year.

I don’t often miss my work in the yard, but even when I do, I don’t miss it with regret. I know what my loves and priorities are: wife, daughters and work. They fill my life. I simply try to make sure all that needs to happen actually happens and that we have fun doing it.

Roles of a Caregiver

People who consider the roles of a caregiver for a family member with MS (or any other disease) tend to think of the medical aspects of caregiving. Medications, medical bills, appointments, and injections. Caregiving is much more. In a nutshell, it’s often simply the process of making sure all that needs to be done for the family is getting done. And because MS is such a variable disease in terms of symptoms and their intensity, the tasks can vary from week to week.

If your partner is fatigued, you pick up the slack. If her right foot’s not working well, you drive. If both legs are wacky, you fill in, take over the kitchen and cook. If disability prevents employment, you find a way to make ends meet. I’m often reminded of the old Army recruiting slogan about doing “more before breakfast than most people do all day.”

I’ve written before about men and women who walk away. And I shared my perspective on that – if a partner walks away because of MS, he or she probably wasn’t really there to start with. MS is not a barrier to an excellent marriage – even if the chaotic effects of Multiple Sclerosis bang against your marital relationship.

Me? I’m simply a man with too many blessings and not enough time!

Caring for Yourself MS Caregiving

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Published September 22, 2010 by

The Implication in the Dark

I’ve thought it many times since my wife was diagnosed with Multiple Sclerosis: I want to outlive my wife so I can take of her. I’ve always known exactly what I mean by this. And it’s simple.

I want to be here to care for her as long as she lives. I don’t want her to face life without me because I don’t trust anyone else to care for her as well as I will. No one else could be as good for her as I am. (Okay, all you psychologists out there ignore my savior complex).

In fact, I know I could be wrong. I can imagine a scenario in which I die before her and she marries an incredibly wealthy neurologist who specializes in MS and who has the money and medical skills required to provide for all of her needs. Yes, I can imagine that, but I don’t believe it’s very likely.

So I intend to be around for a long while.

This desire to outlive a partner with MS is common among caregiving spouses. And it’s typically based on the caregivers’ love of his or her partner. This desire manifests itself in a caregiver’s realization that he or she must take care of his or her own health. (It goes back to the oxygen mask metaphor I used in I’m an MS Caregiver).

Here’s how my desire to always be here for my wife works for me: I watch my diet, I pay attention to stress, I avoid risky behaviors, I get an annual physical. You know what I mean. I do all the things I should do to improve my odds of living long and healthy.

But living longer than her holds an implication I try ignore. It’s there in the dark, hiding in the shadows in a back corner of my mind. And it’s this: if I outlive her, I’ll be left behind without her for a period of time. I’ll be lonely. I know this is true.

Perhaps it’s a protective thing my mind does, but I simply can’t imagine life without her. I find it difficult to imagine life without her because she’s so present for me now. And believe me, living in the joy of the present is a wonderful thing!

Caring for Yourself MS Caregiving

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Published April 19, 2010 by

Spinal Tap, 101

In Multiple Sclerosis has a History, I wrote, “I didn’t know lumbar punctures have been used for diagnostic purposes since 1913”. I think that piece of the History of MS jumped out at me because lumbar punctures (aka “spinal taps”) give me the creeps.

Believe it or not, (and I am certain she will disagree with this) my wife’s spinal tap was harder on me than it was on her.

After all her other diagnostic tests were done – Magnetic Resonance Images (MRI), Visual Evoked Reponse (VER), electromyograms (EMG), blood work (CBC, etc.), electroencephalograms (EEG) – the lumbar puncture (SPINAL TAP) was saved for last. It’s the one test that actually answers the question, “is this Multiple Sclerosis (MS)?”

The way I understand it, spinal fluid is removed and sent to a lab which uses electroflouresis and looks for oligoclonal bands – don’t worry, I don’t understand it either. If the oligoclonal bands are present in the results, then they, along with the other test results, make it official: it’s MS. (According to Wikipedia, “Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands“.

Drawing the spinal fluid is a fairly simple, uncomplicated procedure for the doctor and patient. Perhaps, not so much for the husband/caregiver, though.

I didn’t see it all because of where I was standing when it started, but it looked like a very professionally organized medical procedure. My wife sat sideways on an examining table with a nurse beside her at the table’s end. The neurologist stood behind her with a shiny tray of medical instruments.

My wife’s feet were placed on a round, stainless steel stool in front of her beside the examining table. The stool was adjusted to just the right height for her comfort. (Up front, I want to add there was no stool or seating of any kind for the husband/caregiver). I stood in front of her for moral support and to help her remain still.

A little local anesthetic was administered at the spinal tap site. After a few moments of the neurologist asking, “Can you feel it now? Can you feel it now?”, he was ready to begin.

Knowing that medical procedures have caused me to feel a little faint in the past, I focused my attention on my beautiful wife’s face. She, however, wasn’t really in the mood for deep eye-gazing and so I was pretty much to myself. But I did my job well. I kept her still and provided continuous support.

A few minutes into the procedure my wife, doing as instructed, reported to her doctor, “I can feel that. It’s like a little pressure.”

For the first time, I looked over her shoulder at the neurologist. In response to her report that she could feel something, he reached to his shiny collection of goodies. He chose a syringe with a needle and then he did the oddest thing. He tilted sideways a bit.

I looked to the nurse and she was leaning the same way! And the walls, too!

It hit me. I was fainting!

Quickly, I searched for a place to sit. And right in front of me was the stool for my wife’s feet. Perfect!

Then that little part of my brain that often has the last rational thought before it all goes black, screamed into my dark fog, “No! She can’t be moved!”

Searching around the leaning room in slow motion I saw so many things: the tilting neurologist was focused on my wife’s back, the tilted nurse was focused on the neurologist, my leaning wife was looking at me with big eyes and raised eyebrows (she suspected what was coming), the bright surgical lights were dimming, to the left was a doorway. I fell through it and, as it opened, I saw my landing place in the dark: a surgical chair! I crashed!

Fortunately, the room I crashed was empty and no procedures were in progress!

I leaned back in the chair like I were at the dentist’s. The darkness began subsiding. Slowly, I began gathering my senses and noticed a stack of surgical towels and a sink beside the chair. Grabbing a handful of the towels, I plunged them into the cool running water and covered my face waiting for the nausea to pass and clarity of thought to return.

As soon as I felt like sitting up I began pulling the towels from my head. Immediately, a nurse walked into the room through the other door.

She stopped when she saw me. I was not expected. I tried to grin without looking goofy as water dripped down my head and onto my shirt.

“Can I help you sir?”

“No, I think I’m ready to go back in for more,” I replied. Her eyes widened as she backed out of the door.

I walked softly back into the room where my wife, the neurologist and his nurse were still at it. My head pounded. Sheepishly, I stood in front of my wife. Seeing my pale face and wet hair, she knew her suspicion had been true.

“I almost fainted,” I explained softly.

“I know,” she replied.

“How are you doing?”

“He’s almost through”, she offered calmly, continuing to sit still on the examining table.

“That’s good. I’m here for you, Baby”, I offered.

“I know you are.”

Caregiver’s Tip: When forced to observe medical procedures that may cause you to faint, make certain you have an appropriate landing place before the procedure begins.

Caring for Yourself MS Diagnosis Practical Tips

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Published April 1, 2010 by

Finding Caregiver Support

During the last few weeks, I’ve been asked by caregivers (via this blog’s contact form) for help finding support for themselves in their local communities. I take these requests seriously.

In fact, it would be impossible not to because the caregivers include information about their particular needs. Perhaps it’s empathy, or a sense that we’re in this thing together, that always gives me a little sadness when I read requests for help. I so wish there were a way to eliminate Multiple Sclerosis.

While looking over this week’s emails, I realize that there are a couple of general pointers I can offer to caregivers who are looking for support in their local communities. I’ll summarize them here. They may not work for every MS caregiver, but the principles will hold true for most.

1. Find a religious community you feel comfortable associating with. It’s nearly a universal truth: those who seek relationship with God will have an interest in serving their fellow man. If you have lived in your community for a period of time and have participated in a local faith congregation, you know what I mean. Sunday School classes, Bible study groups, all sorts of small groups seek to minister to others in need. If you become comfortable enough with a local minister to be vulnerable and share your need for support, I think the chances are good that you may find exactly what you need.

2. Don’t limit your search to caregiver support groups related to Multiple Sclerosis. The social services department of many hospitals will offer support groups for caregivers in general, unrelated to a specific disease. Again, in their ministry to the community, many churches will offer caregiver support groups.

Can a non-specific caregiver support group be helpful for you? Will other group members be able to relate to your unique needs as a caregiver for a Multiple Sclerosis patient? Probably, yes. Much of the stress related to being a caregiver is unrelated to the particular disease. Much of it is caused by the emotional issues that arise, the interpersonal struggles that come between you and the person for whom you care, the general issues related to scheduling, managing medical matters, financial difficulties, juggling the parental roles of two when only one parent is able to be active. You get the idea.

3. Use the Internet. The quickest way to find a caregiver support group in your community is to use a search engine and search for: “your town’s name” “multiple sclerosis” “caregiver support group”.

For example, I would search for: Ruston “multiple sclerosis” “caregiver support”.

4. National and international Multiple Sclerosis-related organizations have chapters across the country and around the world. These are good resources for caregivers and patients. Take advantage of the connections they have in your community by visiting the web sites of organizations like National MS Society, Multiple Sclerosis Association of America, and the Multiple Sclerosis Resource Center.

5. Finally, don’t give up in your search for support. I cannot stress strongly enough the fact that if you do not take care of yourself, you will not be able to care for your loved one. Find the support you need, even if the search for help is a frustrating process. Among religious communities, non-specific caregiver support groups, the Internet and MS-related organizations, support for caregivers is available in many communities.

Caring for Yourself MS Caregiving MS Support Groups

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Published March 28, 2010 by

Study: Hello Illness, Goodbye Marriage

Hello Cancer, Goodbye Marriage: A new study shows that men are more likely to ditch their sick spouses, should really be titled, “Hello Illness, Hello Marital Stress”.

The authors, Barbara Kantrowitz and Pat Wingert, are reporting on an article in the November 2009 issue of Cancer, titled, “Gender disparity in the rate of partner abandonment in patients with serious medical illness”. Of course, the research article’s abstract begins by stating the obvious, “Life-threatening illness creates severe stress that may result in marital discord, separation, or divorce and may adversely impact treatment, quality of life, and survival.”

While the Newsweek summary of the findings focuses on couples where one partner has cancer, the original study is of 515 patients: 214 have a malignant brain tumor, 193 have a serious brain tumor with no nervous system involvement and 108 have multiple sclerosis. All were married at the time of diagnosis.

Because Newsweek has summarized the finding of the Cancer article, I’ll not do that again here. I’ll merely point out the obvious: caring for a spouse who has a severe illness is stressful and disrupts marital relationships. Unless one marries a partner who has already been diagnosed, it may be impossible to understand the implications for one’s future which is contained in the small phrase, “in sickness and in health”.

I may comment on this study again in the future because I think it describes a phenomenon that is so very important for multiple sclerosis caregivers to appreciate. And because I know it is possible to build a stronger marriage – even as the chaotic effects of Multiple Sclerosis bang against your marital relationship.

And as fascinating and accessible as the Newsweek article may be, the readers comments to the Newsweek article are worth studying all by themselves. People have a lot of emotion about the issue of spouse abandonment: http://www.newsweek.com/id/223079/output/comments

Caring for Yourself Living with MS MS Research

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Published March 28, 2010 by

What? Me, Worry?

Mark Twain said something about cats and hot stoves. “We should be careful to get out of an experience only the wisdom that is in it – and stop there; lest we be like the cat that sits down on a hot stove lid. She will never sit on a hot stove lid again – and that is well; but also she will never sit down on a cold one anymore.

If you care for someone with Multiple Sclerosis, you know life can be like a commercial kitchen with all the burners lit up. But, for sanity’s sake, its important to follow Twain’s advice and not expect every stove to be hot. Another saying (related to paranoia) is, “just because you worry about something, doesn’t mean it won’t happen.”

Me, I’m not a worrier by nature. But when I do find myself worrying about something, it’s usually not something I’m only imagining might happen. When I worry, it’s usually about things that have actually already happened, things that I know could happen again with similar or even worse consequences.

A good example occurred last week as I was driving home for lunch. The drive takes me just a few minutes, but on the way home, I thought about the fact that I had been in meetings all morning long and hadn’t talked with my wife. She had still been asleep when I left the house to drop the girls off at school. After dropping them off, I went to work and straight into meetings. We had not talked all morning! Then, an almost positive thought, “Of course, she’s alright.”

During the next few minutes as I drove home, I worked through a small list of things I worry about when we’ve not touched base frequently enough: What if she fell and knocked herself out? What if she were cutting veggies and cut herself? What if she stumbled in the yard walking Einstein? What if she got her medicines mixed up?

I’m fairly rational and I find that to be a useful characteristic for managing these little worries. First, I go to statistics. I think about probability and rationalize like this, “She’s fallen in the last 12 months, so the odds are against that.” Second, I go to what I know about her habits and behaviors, “She never cuts veggies in the morning,” or “she has her meds so well organized, she can’t mix them up.”

But even with those effective “anti-worry” techniques, I’m always so relieved to arrive home and find she’s fine, that I’m grateful for the grace and enjoy a longer “welcome home” hug. And, “besides”, I tell myself, “nothing ever happens if I worry about it!”

Caregivers Tip: It’s human nature to worry about things that might happen to a loved one. Think of little worries as reminders to fix what you can to prevent the thing you worry about from happening. If you worry about a fall in the shower, install secure, grab bars and antislip strips in the shower. And find your own brain games for dealing with little worries. Because you’re going to have them. Try thinking rationally, using probability, and considering what you know about your loved one’s habits and behaviors.

Caring for Yourself Practical Tips

brain games little worries mark twain paranoia stop worrying worry

Published February 8, 2009 by

Avoid Burnout

In the Health section of PhysOrg.com is an article titled, “How to … avoid burnout”

Burnout – a state of mental, physical and emotional exhaustion — leaves people feeling hopeless about the future. While the focus of the article is on workaholism, the tips from therapists on staying healthy in stressful environments are perfect for caregivers.

For example, one tip is, “Nurture your spirit. Do something just for yourself, whether it’s listening to music, exercising, getting a massage, reading or writing in a journal.” It’s a quick read that may remind you that putting on your own oxygen mask first is important.

Caregiver Tip: Remember to keep yourself in good health, clear minded, and emotionally healthy. You cannot care for others if you do not care for yourself.

Caring for Yourself

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Published October 11, 2008 by

Fighting Fatigue and Finding Energy

It is not unusual for caregivers to find themselves physically wiped out and without energy.  MSNBC.com has a helpful article titled, “Moving in slo-mo? 10 ways to pick up your pace“.  The ten suggestions in the article are easy to implement and, while they won’t make stress go away or reduce the amount you must get done, they will supply you with energy to fight your physical fatigue.

Caring for Yourself

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Published May 17, 2008 by

Make Time for You

I hope these first few paragraphs don’t sound like a whine. They’re not because I know a lot of people whose schedules are a lot rougher than mine. My wife’s relapsing-remitting MS is managed well and I have nothing to complain about. But I do want to use comments about my busyness lately to share six important points about making time for yourself.

My schedule is usually more forgiving than it has been lately. I work as a Director of Information Services. We’re building a private, statewide network and implementing new proxy servers, firewalls, switches and network filters. To make it happen, I’ve worked longer hours than usual this past month and all night a night or two each week.

Several years ago I promised myself (and continue to promise myself) that their mom’s Multiple Sclerosis will not interfere with my daughter’s childhood and adolescent experiences. My youngest plays softball two or three times a week, my oldest sings in the high school choir, all state choir, and church choir. They travel. They have friends spend the night. They go to parties, movies, etc. In other words, they’re having a normal adolescent experience.

In the last week at home, I’ve grilled for guests, cleaned, chauffeured, delivered, mowed, done my state taxes, transported, clipped hedges, been a dugout coach and been to doctor’s offices. I’ve cut a wall out of the hallway and built a linen closet. I could go on, but it would only be to support the fact that I’ve been too busy to have time for myself lately. While mowing this morning, I stopped the mower and stretched out on the lawn in the shade of an Elm tree to rest for a few moments. The grass was cool, the breeze blew up the hill, I almost fell asleep. It was the first, pure “me” time I’ve had lately. It was only for a few minutes, but it felt good.

Few people with responsibilities for others have all the time they wish for themselves. It’s part of the deal that comes with responsibility. And the tips below apply to all caregivers: young moms, family caregivers, hospice workers, anyone who care for another.

Here are a few tips to help you make time for yourself:

1. Understand that making time for yourself is necessary

As a caregiver, there will always be periods of time where you find yourself overwhelmed by the tasks set before you. And for brief periods, it is possible to do it all — for brief periods.

But you can’t do it all, all the time, without making time for yourself. It’s impossible.

2. Making time for yourself requires effort

It won’t just happen, so don’t expect. You must make time for yourself. It requires effort. Perhaps you will schedule a set hour each day and protect it with all your might. Or maybe you’ll arrange an afternoon off each week. However you do it, it will require effort to schedule and protect your own time.

3. Making time for yourself may seem selfish.

A caregiver can be so busy caring for another that not caring the full 24 hours a day seems wrong. It’s not. Don’t let yourself feel guilty.

4. Determine what your real “Must Do’s” are.

Life is filled with things we think we must do. Many of these activities are real “Must Do’s”. Bad things will happen if they are not done. For example, I must deliver my oldest child to school in the mornings. I must shop for groceries. I must pick up prescription refills. You know what the real “Must Do’s” are in your life.

Some of the “Must Do’s”, though, may not be real “Must Do’s”. They may only be things that would be nice to accomplish. For these, think clearly about them and then call them what they are, “Good To Do’s”. It would be good to mow the hill this afternoon. It would be good to attend the neighborhood ice cream social. It would be good to read a chapter in the new book. It would be good to do a lot of things that you don’t have time for.

First, do the “Must Do’s” in your life. Then, if you have time to spare, knock out some of the “Good To Do’s”. Or do just one of them.

5. Avoid excessive volunteering.

Notice the word “excessive”. I am a strong believer in the value of volunteerism. Many organizations would be unable to accomplish their mission if it were not for people who volunteer to help. The key word here is “excessive”. And only you can determine at any point in your life what excessive means to you.

However, if you don’t have time to take care of your “Must Do’s”, you certainly won’t have time to volunteer for additional tasks. If you can get your “Must Do’s” done and can make a volunteer task one of your “Good To Do’s” then go for it.

It’s helpful when you volunteer to first set the boundaries around your time. “I can volunteer for 1 hour a week, but no more.” If you set the boundary up front, you won’t feel guilty about setting it later when you’re overwhelmed. Volunteer organizations (with the best intentions) can be incredible time suckers. Your time boundaries are important.

6. Take time off.

Most employers offer vacation leave as an employee benefit. They do it because they know employees are better able to do their tasks if they are refreshed and if they can re-create themselves from time to time.

Caregivers must take advantage of this bit of wisdom from the world of work. Take time off. Make arrangements for friends or other family members to fill in on your “Must Do’s”. Set aside your “Good To Do’s” and take time off.

Make it your time. Do what you need to do to pull yourself back together.

As I wrote in my very first post, put on your own oxygen mask first. If you passout because you don’t take care of yourself, you’ll never be able to care for another.

Caregiver Tip: Make time for yourself.

Caring for Yourself

multiple sclerosis caregiver time management

Published April 24, 2008 by

Eye test and heat-related multiple sclerosis symptoms

Dr. Elliot Frohman, professor of neurology and ophthalmology, led a research experiment on people with multiple sclerosis that demonstrates that increases in heat increase the severity of an eye-movement disorder called internuclear opthalmoparesis (INO).

“Eye test peers into heat-related multiple sclerosis symptoms” on the University of Texas Southwestern Medical Center web site describes the experiment which was published in the March 25, 2008 issue of Neurology.

Dr. Frohman serves as the Director of the Multiple Sclerosis Clinical Center at UT Southwestern.

Visit http://www.utsouthwestern.org/neurosciences to learn more about
UT Southwestern’s clinical services in neurosciences.

Information about the Multiple Sclerosis program at UT Southwestern in Dallas, Texas is available at:
http://www.utsouthwestern.edu/patientcare/medicalservices/neuro/ms.html

From the MS Program’s web page: “Recognized as a world leader in the research and treatment of multiple sclerosis, the Multiple Sclerosis Program at UT Southwestern Medical Center serves more than 3,900 patients with an all-encompassing program equipped to handle the wide range of symptoms that normally makes the disease difficult to treat. The overriding philosophy of the clinical care mission is to treat the whole patient with a team approach.”

Caring for Yourself

Published March 24, 2008 by

Exercise

I grilled for the family Easter dinner after church yesterday.  My parents came over and during the day we had several interesting conversations.  One of the more interesting was about whether my wife and I would remarry if one of us dies early.  We’re both in our mid-40’s.

My oldest daughter participated in the conversation saying, “If Daddy dies early, I think Mom should remarry so she’ll have someone to take care of her.”  I agree.  And while I hope I outlive her, if I don’t, I want her to remarry (but only if she finds a man who loves her and my girls as I do).  There are a lot of conclusions one can draw from my daughter’s comment, but the one I’m thinking of today is that I should really take better care of myself!  (The conversation also points out the importance of family caregivers having enough life insurance to ensure care for an MS patient who remains.)

Now when it comes to longevity, I do have several pluses.  I have a low stress job.  I don’t drink, smoke, do drugs or overeat.  I have no known physical ailments.  My checkups are always good.  I’m a safe driver, wear my seatbelt and do most of my driving in low risk areas.  I don’t play with fire, skydive or do race cars.  I come from a family with good longevity genes.  I have good blood pressure and avoid too much salt.  I’m only a few pounds over my ideal weight.

One significant minus concerns me, though.  I don’t exercise regularly.  In fact, the main reason I push a lawn mower over my 2 acres of grass in the Summer instead of riding a tractor is that mowing is good exercise.  Unfortunately, that’s about all the exercise I get.  I walk around the block a few times a month with my daughters, but I’m sure that’s not enough to be considered regular exercise.

I’m not too old to exercise.  I have a friend of a similar age who plays hours of basketball each Saturday night … often until midnight!  Another friend works out with weights three times a week during lunch.

Why don’t I exercise?  Probably for the same reason many caregivers fail to exercise:  it requires an investment of time and time is always in short supply.  That sounds like a good excuse, but I know it’s not.  I have no good excuse.  I should buy a bike and hit the road.  Maybe start running.  Something.

To be rational, it does no good to wish for a long life if one doesn’t do everything required to live long.  I must exercise regularly.

Caregivers Tip:  Exercise.  It’s good for you and your increased health will be good for your loved ones.

Caring for Yourself

Published February 17, 2008 by

Even God rested

It’s Sunday.  In many cultures, this is a day of rest.

Do you find it difficult to slow down and catch your breath? In the best of situations, finding time to relax can be difficult. However, even brief breaks help.

This afternoon I bulk-loaded some Kodak Plus-X125 black and white film, grabbed my old Pentax and laid down in the yard to take some macro shots of the blooming daffodils and budding roses. I haven’t taken pictures like this in more than 20 years and it felt great.

I wasn’t in the yard more than 30 minutes. But the 30 minutes were exquisite. The sky is crispy blue, the few small clouds are scattered far apart, the breeze is cool and bouncy, the temp is perfect and the humidity is low. In other words, it’s the perfect day to lay in the grass with my old lens a few inches from a bright, yellow daffodil.

Scripture notes that on the seventh day of creation even God rested. I can tell you, it sure feels good.

Caregiver Tip: Take a rest!

Caring for Yourself