My youngest daughter recently graduated from high school and celebrated her 18th birthday. While I know this means she will soon enter college, spread her strong wings and fly into her own future, I am neither sad nor melancholy about childhood’s end in our family.
I am excited for her and the potential for good which her future holds! Like her older sister who launched a few years ago, she, too, is a remarkable young lady and she has incredible gifts to share with the world.
In addition to the excitement, there is relief. I have set aside a concern I’ve carried since my wife was first diagnosed: what if something happens to me before our girls are old enough and stable enough to fend for themselves?
Among my first worries when my wife was diagnosed was what would happen if I died or became disabled before our girls reached adulthood. Would my wife be able to care for them?
Now that both daughters have reached the age of majority, I can look back and know my worry was unfounded. My wife’s disease process has been slow enough, that even if something had happened to me, she would have been able to care for them.
In addition to the relief, here at childhood’s end I find myself considering the impact MS might have had on who our girls have become. I know they are different people than they would have been. I believe they are kinder and stronger.
My wife and I have never framed her MS as something she has. “We” have MS.
(If you are an MS patient, you may be thinking, “Yeah, right. You don’t know what you’re talking about. She has MS and you’re just a good support.” And you’re correct, she experiences the effects of the disease. She and I together experience the impact the disease. We chose to make it ours as a way of saying to each other: we’re in this together.)
I believe our decision to consider MS “ours” influenced our daughters in a positive way. I believe both are more compassionate than they may otherwise have been.
Seeing my wife reserve energy before a big event like a trip to the mall, laughing with her as she fumbles memories, knowing the first day of a vacation is down time while she recovers following a flight, and knowing she wants to do things she cannot because her legs refuse to cooperate has taught our girls that when they look at a person who seems to have it together they are not seeing the struggles the person may be overcoming each day to keep it together. Our girls know people are fragile and that mutual support is the only way to make it through this world.
I believe they are more independently minded than they might have been. They will think for themselves. They will not be quitters. They have seen an independently minded woman refuse to give up.
They have seen a woman determined to make good happen when it would have been easier to stop. They have watched a remarkable woman maintain a positive attitude in the face of daily struggles.
My daughters know the effort required for their mom to be present and help organize events at school. They’ve heard her speak in science classes about the impact of MS on the neurological system and the consequences that impact has on what an MS patient can do. My wife has been a powerful role model for our girls and their friends.
I’ll stop there. We’re at childhood’s end. My wife and I are looking forward to enjoying the just the two of us again!
I’m sure this handy online tool has been available for a while, but today I discovered a wonderful medication interaction checker on Drugs.com.
Drugs.com offers an Interactions Checker which displays the potential interactions between two or more medications. Or between medications and food. After you agree to the terms of service, you can enter a list of medications, click “Check Interactions”, and see a list of the drug/food interactions ranked by potential risk: Major, Moderate or Minor.
A nice feature is being able to choose between the Professional and the Consumer report of interactions. Of course, the Consumer version is written to be less technical/medical. However, having access to the Professional version offers more details. Another nice feature is that the Interaction Checker allows you to save lists of medications so one is not required to re-enter long lists of medications.
Drugs.com’s Interaction Checker is now in my saved bookmarks!
I haven’t posted in quite a while. I just read this and it appears to be something new:
This looks like early stage research, but it’s an approach that I’ve not read about before.
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.
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.
Looking for a way to help advance knowledge about Multiple Sclerosis Caregiving? I know a way.
I have just completed an online survey which is sponsored by the National Alliance for Caregiving and the National Multiple Sclerosis Society. The survey took me about 20 minutes and was not difficult.
Here’s the survey link: www.sirresearch.com/MScaregiver
The study is investigating issues related to caring for someone with MS and the needs of family and friend caregivers. This research is NOT about professionally-paid caregivers.
The survey is completely anonymous and confidential. It did not ask for my name or contact information. Responses will be combined with those of other caregivers and will be shared with the National Alliance of Caregiving and the National Multiple Sclerosis Society so they can learn how to better meet the needs of those caring for people with MS.
If you are a family or friend caregiver for a Multiple Sclerosis patient and wish to assist with this anonymous research, click here: www.sirresearch.com/MScaregiver
If you wish to participate, please do so by Friday, October 21, 2011.
I was surprised that completing the survey helped me become a bit objective about an emotion-laden topic. Try it!
MS costs a lot. If you’re an MS caregiver, you know this to be true. If you’re a casual reader, continue and learn about the predicament that faces Multiple Sclerosis patients and their families.
Health care is expensive. Health care is especially expensive in the United States. I don’t know all the reasons why this is true, but it seems to be related to profit, shareholders, insurance, law suits, regulations, etc. In other words, the system is so complex that I doubt anyone has the real answer to this question: Why do Multiple Sclerosis disease modifying drugs cost so much more in the US than in other countries?
I surely don’t know. I cannot imagine why MS medications cost 67% less in Britain, Canada and Germany. Same manufacturer. Same medication. Same disease. Very different cost.
In fact, Multiple Sclerosis is unusual among progressive diseases in that the medications are the most costly expense category. In the US, the cost of a patient’s MS medications can quickly reach $30,000 per year. But of course, that’s not the only cost associated with Multiple Sclerosis.
MS typically causes some form of disability. MS is a progressive neurological disease in which myelin is removed from neurons. This kills the neurons.
Because of disability, we must consider the cost of lost productivity at work or even the complete loss of one’s ability to work and secure an income. This impact is felt by family members. If an MS patient spouse spends $30,000 on medication and earns $30,000 at work, the family breaks even. In this simple example, we will assume the other spouse, the MS Caregiver wage earner, can support the family financially.
However, many MS patients are unable to work. In those cases, the family does not break even – not even close.
Between loss of employment ($30,000 in our example) and the cost of medication ($30,000 in the US), our sample family pays $60,000 for Multiple Sclerosis. That loss of $60,000 is unavailable to the family. It is an annual hole that must be filled.
Then there are other expenses directly related to medical care. First is inpatient hospital care. Fortunately, this is not a frequent event for most MS patients. Inpatient hospitalization seems to be required about once every five or six years. Average this out and this cost is probably close to $1000 per year. Second, in-home, non-medical care is an expense that many MS patients incur as their MS progresses. These costs vary based upon need and typically range from $6,000 to $12,000 per year.
Crunch all these numbers together and the annual cost of Multiple Sclerosis can easily top $65,000. Many families have insurance which covers some of these costs. But in our current economic environment, I imagine a number of families with an MS patient do not.
We’ve not even touched on impact being an MS caregiver can have on the caregiver’s career. I’ll save that one for a later date.
It happens when my wife completes a patient information form in a new doctor’s office or a dentist’s office. When she sees the question, “Please list any medications you currently take”, I wait for the pause, the sheepish grin, and the inevitable question, “What’s the name of my memory medicine?”
It quickly became a family funny that she cannot remember the name of her memory medicine.
In spite of that little glitch, though, I consider Aricept® to be her best drug.
Prior to taking Aricept®, she had quit reading. It was simply too frustrating. By the time she read to the bottom of a page, she could not remember what she had read at the top. To me, that’s the most telling example of how poor her short-term memory had become.
Her functional, short-term memory improved significantly after starting Aricept®. Quickly, she remembered better where things were, what she had just said or heard, and who had just done what.
Best of all, she started reading again! Now, she’s one of our local library’s most frequent patrons, checks out books by the bagfull, and reads for hours on end. It amazes me that such a little bit of a chemical each day can be so helpful for her memory – even if she can’t remember the drug’s name!
I share this story because it’s a good example of how important it is for MS caregivers to pay attention to a patient’s symptoms so they can be reported to the patient’s physician. It’s one thing to say, “she has memory problems”. It’s quite another to say, “she quit reading because she can’t remember the top of the page.”
Note: I’m not a physician and can make no recommendations about medications. However, you can learn more about Aricept® at www.Aricept.com. Aricept is a medication for Alzheimer’s disease. You can also read more about Aricept (donepezil) on the National Institutes of Health’s U.S. National Library of Medicine’s web site at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001006. The NIH states, “Donepezil may improve the ability to think and remember or slow the loss of these abilities in people who have AD. However, donepezil will not cure AD or prevent the loss of mental abilities at some time in the future.”
This is about ALCOHOL PREP PADS. It is NOT a recall of Multiple Sclerosis medications. However, persons using injected medications for Multiple Sclerosis and their caregivers must pay attention to this because Triad Group-manufactured alcohol prep pads are used to sterilize injection sites.
A News Alert on the Multiple Sclerosis Association of America website (msassociation.org) caught my eye this morning. The News Alert was posted on January 10, 2011 and updated on January 13, 2011.
The MSAA article, “News Alert: Voluntary Recall of Potentially Contaminated Alcohol Prep Products Used with Injected Medications” reports a voluntary recall of ALL Triad Group’s alcohol prep products which are distributed with injected medications.
The National Multiple Sclerosis Society (nationalmssociaty.org) issued a Safety Alert on January 8, 2011, titled, “Safety Alert: Certain Alcohol Pads/Swabs Recalled by FDA — anyone taking injectable medication check package to see if they were made by Triad Group”
Your injected medication is good. This recall is ONLY for the Triad Group alcohol wipes which are included in the packaging.
WHAT TO DO
Use different alcohol wipes. If you cannot find prepackaged alcohol wipes which are not made by Triad, you can use sterile gauze pads to wipe the injection site with isopropyl alcohol (which you can obtain by the bottle at a pharmacy) instead of using a pre-packaged alcohol prep pad.
If you have questions or concerns, you may contact the drug companies which have issued alerts, you may call your doctor or call your pharmacist who will have information about the alcohol prep product recall.
1 (800) 887-8100
Teva Neuroscience, Inc., the manufacturer of Copaxone, provides this alert:
From the alert: “patients should not use any of the alcohol prep pads contained in the Copaxone pack and should discard these alcohol prep pads”
1 (800) 788-1467
Bayer HealthCare Pharmaceuticals, the manufacturer of Betaseron®, provides this alert:
From the alert: “Bayer instructs patients using Betaseron to immediately discontinue using the Triad alcohol prep pads included in the Betaseron packaging and dispose of those pads in the trash.”
1 (800) NOW-NOVA
Novartis Pharmaceuticals Corporation, manufacturer of Extavia, provides this alert:
The Novartis alert states: “Patients using Extavia should immediately discontinue using the Triad alcohol prep pads included in the Extavia packaging and dispose of those pads in the trash. When preparing to take their Extavia injection, patients should prepare the injection site in either of the following ways: By rubbing the area with (i) sterile gauze and 70% isopropyl alcohol, or (ii) alcohol prep pads — from another manufacturer — which are not the subject of a recall. These items are generally available at most retail pharmacies.”
TRIAD GROUP AND FDA ALERTS
The press release from the Triad Group is at:
The United States Food and Drug Administration (FDA) has posted information about the recall on its website at:
The U.S. FDA writes: “Alcohol prep pads, alcohol swabs, and alcohol swabsticks are used to disinfect prior to an injection. They were distributed nationwide to retail pharmacies and are packaged in individual packets and sold in retail pharmacies in a box of 100 packets. The affected Alcohol Prep Pads, Alcohol Swabs and Alcohol Swabsticks can be identified by either “Triad Group,” listed as the manufacturer, or the products are manufactured for a third party and use the names listed below in their packaging: Cardinal Health, PSS Select, VersaPro, Boca/ Ultilet, Moore Medical, Walgreens, CVS, Conzellin.”
Tags: alcohol prep pads
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.)
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.
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!
Have you ever listened to a doctor’s advice and thought, “Quack!”?
Perhaps his medical skills were impeccable, but his advice failed to consider you and your non-medical needs.
One of my wife’s neurologists pushed her to consider having a third child. “Pregnancy reduces the symptoms of MS,” he stated.
“It also results in another child!”, my wife countered. “And I know I won’t have the stamina for that when the MS symptoms return!”
I was reminded of the pregnancy and Multiple Sclerosis issue while reading the latest issue of the Multiple Sclerosis Foundation’s Support Group News, a newsletter promoting participation in support groups. (Free subscriptions are available at http://www.msfocus.org).
“Moms with MS Form Online Community” describes an online community founded by Kristin Bennett exclusively for mothers and mothers-to-be who are diagnosed with Multiple Sclerosis. The “Moms with MS” website requires registration – which I didn’t do because I’m not a mom.
However, based on the information in the Support Group News article about MomsWithMS.com, if you’re a mom or “mom to be”, I suggest you explore the MomsWithMS website. This online support group has 450 members and is doing great things to provide support and information for moms with multiple sclerosis.
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!
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!