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National Family Caregivers Month – Background

In 1994, the National Family Caregivers Association began promoting the celebration of family caregivers during the week of Thanksgiving. President Clinton signed the first presidential proclamation in 1997 and every president since — Democrat and Republican alike — has issued an annual proclamation appreciating family caregivers. As interest grew in family caregiving issues, National Family Caregivers Week became National Family Caregivers Month.
Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care.  Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.
NFCA coordinates National Family Caregivers Month as a time to thank, support, educate and empower family caregivers.  Celebrating Family Caregivers during NFC month enables all of us to:

  • Raise awareness of family caregiver issues
  • Celebrate the efforts of family caregivers
  • Educate family caregivers about self-identification
  • Increase support for family caregivers

“The true strength of the American family finds its roots in an unwavering commitment to care for one another.”
 President Barack Obama, NFC Month Proclamation 2009

Financial Support for Home Care

I’ve been thinking a lot lately about respite care.  I was asked to participate on a committee to look at creating a voucher program in Virginia for caregivers to obtain a small amount of financial assistance so they could afford respite care. I think the idea is wonderful.  So many of us need a break but don’t have close friends or relatives who can provide relief or don’t have insurance that will pay for it.  Unfortunately, funding will be limited and the need is great so many people will still have needs that will go unmet.
I was a consultant on the Committee, essentially one of the voices of those in need who could offer comment about the direction the plans were going.  As I listened to the experts discuss which resources currently available would be the best to contact as sponsors or how would those who need assistance hear about it, I realized just how lost most of us are in trying to figure out where to go and what to do.
I think of myself as being pretty knowledgeable about healthcare and medical systems.  I have a nursing background, though it’s been years since I practiced, and I work in a hospital so I’m familiar with how healthcare works.  However, I’m totally lost when it comes to knowing what to do about getting financial assistance or respite care.
When Lynn first started having difficulty getting around, we decided it was time to apply for Social Security Disability.  That was a 12-month struggle of filling out forms, getting rejected, researching the rejection reason, applying again, getting rejected again, appealing again, etc. until we could go before a real person.  Once we were able to see a judge, all he did was ask when Lynn got as bad as he was and approved the disability. (by the way, I did this myself without a lawyer so it can be done but it takes a lot of time to do it).
Naive me, I though, “great, he has disability now.  Finally, we will get some help.”  Wrong..though not totally.  He does get a monthly income now, much less than he used to earn when he was working but it certainly helps.  I thought; however, that he would also get medical care immediately.  I had no idea there was a two-year waiting period before he would be eligible for coverage under Medicare.  We were fortunate that I had insurance and had him on my policy.  What does someone who is totally disabled and unable to do any work do for two years without insurance?  Doesn’t the government realize that the cost of self-insurance is outrageous if you have a disability IF, and that’s a big IF, you can even get coverage!  Most people would be denied if they had to start from scratch in getting insurance and if you HAD insurance but lost your job and had to use COBRA to keep it, many people could not afford that cost either. It just doesn’t make sense to me that Medicare has a waiting period once disability is approved.
So we waited somewhat impatiently for Lynn to be approved for Medicare.  Again, naive me, I think, “great, now I can get some home care assistance.”  Wrong again.  Medicare Part A, which is free, only covers inpatient care.  Medicare Part B, cost a monthly premium which is higher than the cost I pay if I keep Lynn on my insurance at work.  So having Medicare does us absolutely no good unless he gets hospitalized. So I’m back at square one, my insurance doesnt’ provide for home care assistance on an ongoing basis so if I want someone to care for Lynn while I go into work, I have to pay for it myself, and from what I can tell, “it ain’t cheap.”
Someone told me I needed to apply for Medicaid for him.  Apparently there is some type of waiver program that provides financial assistance to caregivers who take care of family members at home so that the person does not have to be hospitalized.  So now I’m trying to find out about this waiver program with Medicaid; however, the best I can tell, Lynn doesn’t qualify. I may not be reading this right but it seems like the person has to have a monthly income less than $2000/month, which would qualify him but the person also cannot have any savings greater than $2000 which disqualifies us.  When Lynn lost his job, he had a retirement savings account that is more than $2000 plus all our assets are in joint accounts.  While we don’t have much, we usually do have more than $2000 on hand so that we can handle emergency  repairs and purchases.  These days if a car breaks down, or you need a new well (we spent $5000 putting one of those in) or new appliances, or any number of things, you need to have some money readily available.  Plus if I were to be out of work for an extended time, we would need some money to fall back on.  We just can’t afford to get “poor enough” to qualify for assistance.
It’s basically a catch-22, if you’re already poor, you can qualify for assistance, but if you’re not totally poor and only need help to supplement, rather than totally support your existence, there is nothing available.  Financial concerns is one of the main reasons I’m hesitate to hire someone to stay with Lynn.  I’m sure anyone who can provide the type of care he would need would charge around $20/hour.  There is no way I could afford paying someone 10 hours a day (I work an 8 hour day plus I have an hour travel to and from work) for five days!  That’s $1000/week or $4000/month.  I could probably get someone for half that amount if all they did was served as a companion but that would mean I would have to do all his physical care before or after going to work and have to keep an indwelling catheter in him which would make him prone to urinary track infections and increase his risk of hospitalization.
So until further notice, I’ll keep trying to manage a full-time job at home with help from family, friends, and God who always seems to meet our needs, one day at a time.  Anyone got any better ideas?

I Don't Know What I Don't Know

Do you remember when the person you care for was first diagnosed with MS?  You might not have been around them at the time, but I remember it very well.  Those were very confusing days. I was almost sure Lynn had MS.  He didn’t want to talk about it or give the disease any power over him so he refused to acknowledge he “had” it.  He would not read about it, he would not look anything up, he didn’t want to talk about it.  As I’ve mentioned before, he feels that if you give what you have a name, then it tries to take over your life.  If you refuse to allow it to “have” you, then you still have some control.  To me, that was burying his head in the sand. I’m just the opposite.  I think the more you know, the better prepared you can be; so, I started looking up as much as I could “in secret” so I could know what to expect.
I was expecting for Lynn’s first neurological appointment after being diagnosed to be an extensive information session. I figured we would be told what to expect, treatment options, ways to improve his chances of staying healthy, …all kinds of things.  But that didn’t happen.  The doctor came in and took a medical history.  Then he did an examination.  Then he said something about relapsing remitting MS, handed us several booklets on various medications, gave us a handout on a MS study he thought might be a good option for Lynn, and asked if we had any questions???????
Questions?  I had about a million but Lynn had none.  I told myself, “this is his disease and his life.  Let him handle it like he feels he needs to.”  So I didn’t ask any questions but instead went home and read the pamphlets and started checking out information on the National MS Society website. I got an overall understanding of what MS was and some of the treatments, but it was really overwhelming.  There were so many different types and so many different symptoms.  I didn’t know what I needed to know.  Where should I start and what was essential and what was good to know or what might not ever be needed?  That’s when it would have really been nice to know someone who had MS who could have put it all in perspective but although almost everyone we talked to “knew” someone with MS, we didn’t know anyone and we didn’t want to call a stranger to talk.  I was fortunate that shortly after Lynn’s diagnosis, two people I worked with told me their mothers had MS.  That at least gave me someone to question about what was happening.
But you know what I think would have REALLY helped?  It would have really helped if our doctor had decided to treat the person who had MS instead of the symptoms the person had.  I don’t mean to imply that our doctor didn’t do a good job of treating Lynn; he did.  He’s very knowledgeable, he will answer any questions we have, he’s well-respected by his colleagues for his expertise, but unless I asked specifically for some type of referral or information, it wasn’t provided.
I’ve heard about places that have MS Centers.  I think that would be wonderful.  I think that when someone gets diagnosed with MS, they should have a complete physical workup to determine all the potential organs and functions that might be affected.  They need a counselor to discuss their fears, concerns, grief, anger, whatever they’re feeling… and so does their family, both separately and together.  They need to be started on an exercise plan specific to whatever areas of weakness may be present and their caregivers taught how to assist correctly.  There should be a dietician to talk about healthy diets FOR MS PATIENTS; not cardiac healthy eating but what foods are being found to support neuron function.  An appointment with a social worker to talk about planning ahead for applying for Medicare or Medicaid and what resources are in the area to help people with MS.  A pharmacist to talk about the abundance of prescriptions that might help or hinder the symptoms of MS specific to person.  Then wouldn’t it be awesome to have someone to pull it all together and talk about what to expect, handy hints for everyday living, how to handle (fill in the blank)? 
Why can’t a well-rounded approach be used to treat someone with a chronic condition that affects every aspect of their lives and potentially every organ of their body?  When will the medical progression get smart and realize, we don’t know what we don’t know so TELL US! Is that too much to ask?

Connect the Dots

When I was a child, I loved working pencil and paper puzzles. You know the ones I’m talking about?  There were dots, numbers, or letters on a page and as you connected the dots, a picture emerged.  What I did not realize at the time was that doing those pictures was actually very educational.  I learned hand and eye coordination.  For the number and letter ones, I practiced adding or learning my alphabet.  The older I got, the better I got of course but I always loved doing those.
I also liked the mazes.  Sometimes I would cheat (start at the end and work to the beginning) but most of the time I liked thinking ahead, planning my approach and seeing if I could find the best route. 
Life reminds me of those puzzles.  Sometimes I feel like I’m connecting the dots and following the steps in a logical manner.  Other times, it’s like I’m lost in a maze.  I go along fine for a while and then “bump” I run into a wall and have to back up and find a new route.  Doesn’t that sound like life as a caregiver?
When Lynn was first diagnosed with MS, I used my connections at work to start down our path.  I work in a rather large medical center and I know lots of people throughout the center.  I had accompanied Lynn to his cardiologist’s appointment (Lynn also has mitral valve prolapse) and his doctor was asking how he was doing.  I told him that I though his heart was fine but something was wrong with his back.  He asked me who I wanted Lynn to see, I gave him a name, and he got me (Lynn) an appointment. From there we worked our way to a neurologist who was conducting an MS study and he became Lynn’s MS doctor.
Though participation in the MS study, we became friendly with the study nurse.  As I was sharing my concern about how Lynn was feeling and that I though it might be diet related, she suggested a dietician her husband had used.  This dietician had a great interest in MS and she’s the one who found the MS diet that Terry Wahls developed which seems to be making Lynn feel better.
Not everything along this path was a “connect the dots” puzzle. The journey to deal with his severe spasticity was more like a maze.  We tried baclofen tablets until the dose was so high it was obvious that it would not work even with other medications added to make it stronger.  We tried a chiropractor which helped his back but not his muscle spasms.  He tried massage but it released so many toxins in his body that he felt worse.  Then there was acupuncture which for him only caused the spasms to get stronger.  Finally we resorted to a baclofen pump implant so the dose went directly into the spinal fluid. That fixed his legs but now he’s struggling with his arm being tight as a drum. So we turned another corner and tried botox to paralyze the muscle temporarily which worked well for the first few doses but not as good for the last two.  So we back up into the maze and are trying exercise and stretching and next week will try massage again.  So far we have not found the right path in this maze.
But through our MS experience, we have made great connections.  We have some wonderful medical professionals that support us and who truly work to research solutions to his problems.  Our church has been awesome….so many people who hear about our needs and who support us in prayer, donations, assistance of all types.  Our struggles have brought us closer to each other and to our families who stay connected to us now more than ever so they can assist us in whatever we need.
One of the best connections I’ve made is this blog.  I have had so many people connect with me who are experiencing some of what we go through and it’s very comforting to know that they are there.  Knowing how someone else has handled a situation or even just knowing that someone has the same struggle and is hanging in there and surviving each day helps us to push on. 
When Lynn became unable to move around on his own, we stopped going many places.  Mainly now we go to medical appointments or occasionally to the store for something only he needs (he is the only one who can determine what he needs in that department since I am totally incompetent when it comes to figuring out what is needed to fix something).  But even though we are now pretty isolated, reaching out through the internet to find out information or to connect to other caregivers or people with MS keeps us from feeling as if we are isolated.  True, it’s a virtual visit when we talk on-line, but it’s no different from a telephone call and when it’s on-line, it’s on my time which gives me more freedom and more options.
So even though it’s difficult to stay connected if you have MS, it’s possible and it’s necessary.  I cannot get away to go to support groups or conferences but I’ve found out SO much about treatments and options on MS  websites and by reading blogs or comments by people with MS or their caregivers.  We don’t have to be in this alone even if we live alone or in virtual isolation.  That’s why I started blogging.  I wanted to connect to others and hopefully share experiences or something that might make my experiences easier to accept or someone else’s easier to manage. 
I think the MS Connection site that is being set up by the National MS Society and which will go live March 12 (I believe) may help with that as well.  I’ve had the opportunity to see a preliminary version of it and it basically seems like a combination of an MS social network and educational resource. I hope lots of people will share on it because it will certainly provide a way for us to connect the dots from one to another even easier.