Category: <span>MS Caregiving</span>

Published August 11, 2019 by

Multiple Sclerosis and Lifestyle Sacrifices

In research titled, “Caregivers: Expectations and Lifestyle Sacrifices“, the results indicate baby boomers expect to make significant financial sacrifices in order to care for loved ones. The report was produced by Bankers Life Center for a Secure Retirement. The findings will surprise no one who cares for a loved one with multiple sclerosis. We understand multiple sclerosis and lifestyle sacrifices.

Among the survey’s findings:

“Nearly all (92%) middle-income Boomers are willing to make lifestyle sacrifices to provide care to a family member or loved one.”

“A majority of middle-income Boomers (65%) would prefer to receive care in their current home, although more than one-third (37%) of those believe their home would need modifications in order to accommodate caregiving.”

“Caregivers: Expectations and Lifestyle Sacrifices” is not specific to multiple sclerosis. Rather, it focuses on baby boomers’ general expectations about caregiving.
The study participants responded to an Internet-based survey of a nationwide sample of 1,500 middle-income Americans age 54 to 72.

MS Caregiving

baby boomer lifestyle sacrifice

Published October 22, 2011 by

The Value of Willful Denial

In the world of psychology, denial is considered a normal human response to information that may be overwhelming. Denial allows a person receiving bad news to take a break. It lets one hold off bad news – like a football player with his arm out to block a tackle. It offers one time to fortify personal defenses and prepare for an attack of bad news.

Denial is like the chain lock on a doorway. When bad news knocks, you can unlock the bolt and knob, but the chain lock allows you to see a stranger without opening the door all the way. Denial offers a small bit of protection and comfort. Of course, a really bad guy will simply kick down the door.

Many counseling models require a person to “move past denial”. In other words, in those models, progress cannot be made until denial is eliminated and one fully faces and embraces the overwhelming information.

In my world, a little denial is a good thing. I think of “willful denial” as the decision one makes to ignore bad things so one can get on with the good things.

I’m not talking about the irresponsible ignorance of important things like medical options, healthcare practices, the impact of MS on finances, relationship skills, etc. Willful denial never ignores reality when reality demands attention. Willful denial never chooses to discount medical reports. Willful denial never pretends MS isn’t real. Willful denial merely helps me enjoy time with my wife without focusing on the wrong things.

I believe willful denial is an acquired skill. It took a few years before I was able to accommodate the significant changes MS brought, is bringing and will bring. I imagine willful denial is probably a midpoint between initial diagnosis and when things become really bad, when reality bites the heart out of a caregiver.

I’ll share my use of willful denial related to three things: 1) information presented as facts, 2) what daily life presents as continuing trends in a disease process, and 3) what my mind tells me are probabilities for the future.

Search for a Cure

Willfully denying information presented as facts allows me to respond now without emotion to the statement, “there is no cure for MS”. That’s the “fact” that really made me angry. “Of course there’s a cure”, I thought, “they just haven’t found it. It will happen soon!” “What do you mean there’s no cure?!? A lifelong, degenerative neurological disorder without a cure! That ain’t right! Get busy, folks!”

I still believe a cure will be found. But I no longer believe it will happen soon. And when it does, I don’t believe a cure will repair damaged neurological tissue. I hope it does, but I think at best, the cure will simply stop the disease process. What I realize is that it isn’t my job to find the cure. Others will find a cure and I am so grateful for their efforts. It’s big science. Researchers with passion are pursuing a cure for Multiple Sclerosis and I cheer them onward wishing them Godspeed!

What I accept, though, is that whether or not MS will ever be “cured” means little in my daily life. After years of reading about every new or potential “cure”, I realized I can ignore that the search for a cure is even occurring. Focusing on the news of cures stirred too many cycles of hope followed by disappointment. I don’t have time for that because it distracts me from focusing on what I can do well: care for my wife.

Signs and Symptoms

Willful denial allows me to ignore what daily life presents as continuing signs of my wife’s disease process. I choose to see decline through a different window, I reframe daily life so that it is normal. That helps.

(Before I talk about how it helps to ignore slow, progressive decline, I caution you. Never ignore new symptoms. Anytime a new symptom appears, discuss it with the patient’s physician.)

Last night my wife and I went to the theater to see, “The Big Year”, a cute movie about three men who are competing to see the most birds in a single year. I was once a birder and really enjoyed the movie. My wife enjoyed it because it was cute. After one birding excursion when we were engaged, she declared she would never be a birder.

As the crowds scurried around us as we left the theater, moving at their normal, festive pace, I held my wife’s hand and we walked like a couple 40 years older than we are. Very slow. Stepping off a curb was a tedious process. Frustrating for both of us. I used a little willful denial and reframed it like this, “Yes. I hate that she can’t skip quickly with me to the car, but isn’t it nice to feel her hand in mine and enjoy this slow walk while everyone else is hurrying, missing the beautiful moon and cool breeze?”

It’s willful denial. But it makes the present pleasant.

Future Probabilities

One cannot live well without considering the future. And willful denial is not an excuse for not preparing for the future. If you are a caregiver who doesn’t prepare for the future, you are missing an important part of caregiving. Once you are prepared, though, except for an occasional check to see if additional preparations are needed, I think it’s possible to ignore concerns about the future and focus on the present.

Having done all I can do to prepare for the future, willful denial allows me to focus on the present by ignoring what I know are the probabilities the future holds. Instead of running each day through an ugly list of symptoms and experiences that I know are probably sitting out there in our future, I focus on today. This day. I deny that ugly future’s power over my daily operations. I willfully choose to ignore what I cannot control and enjoy today with my wife.

There are certainly times when denial is a bad thing. For example, if it kept me from facing reality with integrity and courage, denial would be bad. But when used willfully with awareness, a little denial allows me to focus on today and enjoy every good moment without fear of the future or pity for the present.

MS Caregiving

caregiving the big year willful denial

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

diagnosing Multiple Sclerosis differential diagnosis neurologists wishful thinking

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

caregiver depression caregiver fatigue christmas melancholy hallelujah chorus seasonal affective disorder

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

difficult caregiving ms diagnosis multiple sclerosis blog

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

disability injections medical bills priorities

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

annual physical avoid risky behaviors caregiving spouses

Published June 16, 2010 by

Get to Know Your Pharmacist

The title gives it away, but with which medical professional is a Multiple Sclerosis patient likely to have the most contact?

In my experience, it has been her pharmacist. Most medications are refilled monthly. Between quarterly or annual visits to the neurologist, I believe most concerns about Multiple Sclerosis are related to medications. And in my experience, the pharmacist is the more accessible, knowledgeable source of information about medications and their effects.

The most helpful professionals on my wife’s “treatment team” are the pharmacists at our local pharmacy. In fact, I imagine they know more about the current status of my wife’s health than does her neurologist. The pharmacists are so helpful, they’re on speed dial in my cell phone.

Here are some examples of how forming a relationship with a good pharmacist will make your role as a caregiver much, much easier.

1. Pharmacists know about drugs. Take advantage of the medication education a pharmacist will provide when a new medication is prescribed. Medications come with fact sheets (written in fine print). If you ask, a pharmacist will explain them for you in plain English. Examples of a few important questions to ask about each new medication include:

  • What is this medication for?
  • Will the patient’s other medications interact with this new drug?
  • Do other medications she is taking effect when this one should be given?
  • What side effects should we worry about?
  • What if she forgets a dose?
  • With or without food?

2. Pharmacists really understand drug interactions. It is important to ask a pharmacist about the potential consequences your patient’s prescribed medications may have with over-the-counter medications for such things as cold or allergies. Some drugs interact with each other to complicate or compound the side effects. The last thing you want is to create a problem while trying to treat symptoms of a cold. Pharmacists love to talk about drugs. It’s the reason they went to school for a long time! Take advantage of their knowledge.

3. Pharmacists know what works. Doctors specialize in your body. Pharmacists specialize in what medications do and can do to your body and its processes. More than once a good pharmacist has intervened on a patient’s behalf when he or she noticed the physician’s prescription may not be appropriate. A phone call to the doc is usually all it takes to fix the problem.

4. A good pharmacist can make traveling easier. Ever forget to take important medications on a trip? If you call your home pharmacist. he or she may be able to work with a local pharmacy where you are visiting to provide enough medication for your visit.

5. Your pharmacist can also be a great ally for you in your efforts to communicate with your insurance company about medication authorizations. Pharmacists really understand the whole medication approval process and can give you pointers about relating to insurance companies or provide information on your behalf.

6. Finally, my pharmacist serves an excellent gumbo from his front porch each Halloween night and sets tables in his yard for all the trick or treat parents!

MS Caregiving MS Information Sources MS Medications

drug interaction medication education medications multiple sclerosis pharmacist pharmacy

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

caregiver support caregiver support group MSAA multiple sclerosis caregiver NMSS sunday school class support for caregivers

Published January 19, 2010 by

She is God’s Best Gift

On a recent evening, my wife and I were sitting in the living room, both of us reading and sipping hot chocolate before we ended our day. She, snuggled in a dark pink sweater and wrapped in her light pink afghan, caught my eye as I sat in my chair. She smiled.

“I enjoy the peace of our life together,” she said, “and I enjoy knowing I don’t have to worry about you leaving me.”

At first I thought she was talking in reference to the novel she was reading.

I raised my eyebrow. “I didn’t know you had ever worried about me leaving,” I offered.

“I did. Not a lot, but I did. It was right after I was diagnosed with MS.”

“Oh.”

I remembered her telling me about a lady in her MS support group whose husband left her after they learned she had MS. At the time I thought she was simply sharing information. And I remembered (about that time) she also mentioned she had read in a book about spouses who leave their partners after learning of an MS diagnosis.

I’d like to think my commitment to her has always been so blatant and obvious that she never would have wondered about me leaving her. But then again, after she heard of a husband leaving his wife, after reading a chapter in a book about it and after living with me and my disbelief about the neurologist’s diagnosis, I can see how the fear of me leaving may have felt very real.

We’ll soon return to our honeymoon cabin to celebrate our 20th wedding anniversary. I’ve never considered leaving. She’s been the center of my world and has always held my heart. She’s God’s best gift to me and is His most constant and present expression of grace for me. Theologians may quibble about that, but I have no doubt that God loves me: He gave me her.

While I wish she had never experienced the fear of being abandoned, I think I understand the emotional dynamics. And I’m certainly glad she navigated her way through her fear and enjoys our relationship without concerns.

How did I miss her fear? I think it was because in those early months following her diagnosis, I spent a lot of time trying to do what guys tend to do most when they feel like they’re losing control … I tried to fix things. I focused so much on the practical things required for us to handle MS well that I overlooked her fear. I spent so much time being a cheerleader that I missed her concerns.

(Besides, if I’m learning to give shots in her stomach, buying books about MS, and bumping up my life insurance so she’ll be taken care of if I die first, how on earth could she think I’d consider leaving?)

While I made good plans for the future, I missed some of the important emotional content she was experiencing. I assumed she, like me, looked into the future and saw us always together. But it wasn’t so clear for her then. I’m glad it is now.

I know husbands can disappear when their wives are diagnosed with significant illness. (And some wives leave when their husband is the patient.) Just this past week, I heard from a friend about a woman who’s husband left her after she learned she has cancer. It happens often enough that it may even be normal for someone who is diagnosed with Multiple Sclerosis or an other chronic illness to wonder if her or his spouse is going to remember the “in sickness” part of the marriage vows as well as they remember, “and in health.”

Caregiver’s Tip:

Even partners in solid marriages can be fearful of abandonment. If you think you need to reassure your partner that you’re in it for the long haul, do it.

MS Caregiving Theology of Caregiving

abandonment multiple sclerosis and marriage

Published December 20, 2009 by

One couple’s journey of love

MS Caregiving

husband as caregiver ms caregiver multiple sclerosis and marriage

Published November 23, 2009 by

Family Caregiver Alliance Publication on Multiple Sclerosis

Spend time on the Family Caregiver Alliance website at: http://www.caregiver.org

Of particular interest to Multiple Sclerosis caregivers will be the Family Caregiver Alliance Fact Sheet on Multiple Sclerosis. In addition to common information about MS, the fact sheet includes important information about cognitive problems caused by MS and their impact on caregivers.

For example, “About 50% of people with MS will develop some cognitive problems. Symptoms include a slowed ability to think, reason, concentrate or remember. Only 10% of those who develop cognitive problems experience symptoms severe enough to interfere with daily activities.”

The factsheet reports the most common cognitive problems include:

  • Memory recall, particularly remembering recent events.
  • Slowness in learning and processing new information.
  • Difficulty with reasoning, such as analyzing a situation, making a plan and follow through.
  • Poor judgment.
  • Impaired verbal ability, such as slowed speech or difficulty coming up with a needed word during conversation.

While the FCA Factsheet on Multiple Sclerosis will interest MS caregivers, the entire web site of the Family Caregiver Alliance is an incredibly helpful resource for caregivers. Visit http://www.caregiver.com/ and learn more!

Living with MS MS Caregiving

cognitive problems MS fact sheet verbal ability

Published February 11, 2009 by

Doing Your Best

“Doing Your Best When You Can’t Make It Better” has been the tagline of this blog since I started it. I think the tagline may express too much futility. Maybe I was having a bad day or month when I wrote it.

Today, I’m changing the tagline to something much more positive and more reflective of what the MSCaregiver blog has become: “Tips and Info for Multiple Sclerosis Caregivers”. The content will not change because of the new tagline. Nor will anything else about the blog change. I just realized I’m tired of the “can’t make it better” notion.

In fact, that initial phrase, “doing your best when you can’t make it better,” is the antithesis of what caregivers do. We do make it better. I know my wife is healthier and happier as a consequence of me doing my best to make things better. Her life is better.

New idea! The tagline will be, “Doing Your Best Does Make it Better“. I’ll try that for a while and see how it feels.

MS Caregiving

doing your best multiple sclerosis caregivers tagline

Published January 31, 2009 by

Children as Caregivers

One of the first commitments I made to myself after my wife was diagnosed with Multiple Sclerosis is that I wouldn’t allow it to impact my children in negative ways. That was eight years ago. They were five and eight years old at the time. Fortunately, my wife and I have been able to keep that commitment. My girls aren’t responsible for taking care of their Mom.

That’s not to say they have been untouched. I’ve written before about the positive aspects we’ve discovered through the years. I believe I’ve been much more present for my daughters with transportation and shopping. And I think they are both more compassionate than they otherwise would have had the opportunity to become. Unfortunately, what we’ve been able to do isn’t the case in every family.

It’s difficult for children who find themselves in the role of caregiver. One of the more important studies about the impact of being placed in a caregiving is “Young Caregivers in the U.S.”

“Young Caregivers in the U.S.” presents the results of two studies into the prevalence of children who are caregivers and the impact their roles as caregivers have on them. The studies were conducted by Mathew Greenwald & Associates, Inc. for the National Alliance for Caregivers and the United Hospital Fund.

The studies had three main objectives: to determine the prevalence of caregiving among children in the U.S., to learn what role children have in giving care, and to learn how the caregiving role impacts the life of a child.

It isn’t a surprise that the more intensive a child caregiver’s role is in caring for a parent, the greater the impact is upon their experience of childhood. Perhaps much of what the report describes is best described as a role reversal in which a child is placed into a parental role to care for a parent or grandparent. Family theorists call a child in this situation a “parentified child”.

“Young Caregivers in the U.S.” paints a grim picture. “About six in ten child caregivers help their care receiver with at least one activity of daily living (ADL) (58%). ADLs include bathing, dressing, getting in and out of beds and chairs, using the bathroom or diapers, and feeding. Specifically, 30% of child caregivers help with one ADL, 16% help with two, and 12% help with three or more.”

Some of report’s conclusions: some of the results are mixed. Children engaged in caregiving are not usually doing it alone and are participating in the same educational and social activities as their noncaregiving peers. There are indications, however, that some children are experiencing distress that is manifested in behavioral and school problems and feelings of isolation and sadness. Boys in particular seem to have more difficulties than girls. Children in minority households with lower incomes are under particular stress and report receiving less help in carrying out their tasks.

Suggested solutions are more general in nature and include ideas about creating services to assist child caregivers. The report ends with an extensive bibliography of related resources.

Caregiver Tip: It isn’t possible in every situation because family life is different for each of us and because life is harder for some than for others. However, to the best of your ability, avoid placing children in caregiving roles.

MS Caregiving

caregiving children child caregiver

Published January 17, 2009 by

Family Finance for Caregivers

As a caregiver, you know your family finances are probably different than those of some of your friends. You have medical expenses most of your friends do not have. Chances are good that your friends’ families are dual income families. Yours is probably not. Caregiving often brings its own unique set of financial burdens.

Helpful information is available if you wish to learn how you might better manage your financial burdens, especially as they are compounded by the current economy.

TAKE CARE! – Self Care for the Family Caregiver is the National Family Caregivers Association‘s quarterly newsletter written to provide members of NFCA with information, insight, support and knowledge. It’s a great little newsletter with well-written articles.

In the current issue (Winter 2009), there is extensive information for caregivers about managing family finances in the current economy. And it’s good information. Articles include “The Costs of Caregiving”, “Money-Saving Tips for Family Caregivers”, “Protect Yourself Against Financial Fraud”, and “Tax Tips for Family Caregivers”.

As a member of NFCA, I receive a paper copy of National Family Caregivers Association’s TAKE CARE! newsletter. Mine arrived in yesterday’s mail. I’ve just checked the NFCA web site and this quarter’s newsletter is already available online in the caregiving resource section of the NFCA’s web site.

Caregiver Tip:

If you’ve not yet discovered the National Family Caregivers Association, take a moment to visit their website at www.thefamilycaregiver.com. I think you’ll find it to be a solid source of helpful information.

MS Caregiving Online Caregiving Resource Practical Tips

family finance financial burden medical expenses mil NFCA