Rx for Healthcare - A Strong Dose of Compassion

When I saw the pro-public option healthcare demonstration in D.C. today on the news, I cheered! It seems that although so many people would like a public option for health insurance, most of what we see on the news shows is about those opposing health reform measures.

I want a public option! I am unemployed as I care full-time for a totally disabled husband who requires very expensive home health aides to get him/us through each day. Although I am healthy so far, my insurance premiums go up 50% every year! And I still pay deductibles, co-pays, and more. We still pay big bucks for my husband's medications also, when we hit the Medicare drug "donut hole" and they won't pay any more. And we pay big bucks for drugs that Medicare considers "tier four" and will pay only a tiny percent of the cost.

The demonstration in D.C. today was aimed at health insurance company executives who were having a meeting there. As much as I dislike health insurance companies because of their objective of making profits, they are not the only ones at fault for our horrid health system. The real demon is selfishness - selfishness which is shared by those in many groups: a) the selfishness of health insurance companies who want to make as much money as they can; b) the selfishness of drug companies who need HUGE profits so they can advertise their drugs in all the media and bribe doctors to give out their drugs (drugs should not be advertised; if we need them, our doctors should know that! No "ask your doctor about....." Pffff!); c) the selfishness of Americans who are pleased with their insurance situation and don't want any government interference in private lives, even if they can keep what they have re health insurance while the government helps others - they see this as a first step toward Big Brother-type government taking over of our lives; d) exorbitant costs of too many tests given to patients because a patient's various doctors do not communicate effectively with each other; e) the selfishness of lawyers who wage frivolous lawsuits against doctors that are not always called for, raising rates of doctor's liability insurance, thus raising doctor's fees.

And the confusion of all the various insurance plans and drug plans!! OMG!! It is virtually impossible to choose the "best" plan for you by wading through all the different scenarios of premium vs. deductibe vs. zillions of other variables. Then some people want to expand choices across state lines - we need more choice????? HELP! I want a public option - I want Medicare; although imperfect, Medicare is way preferable to what I've got in my private plan. I'm just not old enough for Medicare yet.

And then, the doctors' office staffs have to contend with all of these zillion different plans - that is expensive also for the doctors, not to mention downright maddeningly frustrating.

A recent article in TIME magazine placed America behind the other Western countries (Canada, France, Great Britain, etc.) that have public insurance with regard to life span. Therefore, our private system is NOT delivering the best healthcare.

The healthcare mess in Congress is just that - a mess! Everyone squabbling over their own narrow selfish interests or those interests that pay politicians to squabble for them. If any health reform happens, it won't be very different from what we have now, I fear, and I certainly don't expect any difference to be made in my own situation of no income and HUGE medical expenses and health insurance premiums.

So, what would Jesus do? Jesus would work toward a solution that would benefit everyone. If people weren't so consumed with selfishness, we wouldn't need a Government because we would all help each other in our communities. But that isn't the case. There are many, many wonderful giving, unselfish people, of course - but theirs are usually not the voices out there fighting for their interests. Our Congresspeople should be looking toward the good of everyone; then we could have "trickle down" compassion. Wouldn't that be great? But love of money and selfishness are so rampant in our society that they are the greatest illnesses we have - illness of spirit of a society where so many reject God and His ways of love and compassion. Until that great illness is cured, I can't see that help for our physical illnesses will become easier to obtain.

But that's just my opinion, from my own little corner.

My Red Balloon

Did you ever read the book or see the film "The Red Balloon?" My parents gave me the beautiful picture book from the film when I was a child, and I have seen the film several times; I've since gotten a copy of the book for my grandchildren.

It's the story of a little boy named Pascal, who lives in Paris and one day finds a red balloon. It becomes his best friend and constant companion, waiting outside his apartment window for him, when his mother won't allow him to bring it inside. One day a bunch of rough kids capture the red balloon and break it with a stone. While Pascal is sitting next to the broken balloon with his broken heart, slowly all the balloons in Paris come together - all colors of balloons float through the sky and their strings tie together and come to Pascal. He holds onto the strings of the balloon bouquet and is lifted into the air by the balloons, flying away in the sky over Paris. What a beautiful, happy ending!

As I sat by my ill husband's side just now, crying because he rarely talks and because sometimes it just gets to me more than other times, I felt like Pascal sitting beside his broken balloon. Like the red balloon, my husband is very "broken" by his illness, and has been "broken" since we were married almost 11 years ago.

As the balloons of Paris came to Pascal to heal his grief and lift him into the sky, so God has sent me so many new friends and three beautiful grandchildren, all of whom have lifted me up from my grief and who help me endure it every day. My co-well spouses from Well Spouse, new friends from church, and the many activities I do for Well Spouse have given me new life in the face of the depressing illness that I am "married to".

But unlike Pascal, I will not go flying off happily into a sunlit sky, because I will have always lost my husband, because we never had a "normal" marriage, and no matter how many "balloons" God puts in my life, I will always have the pain of the one broken balloon - my husband. Yes, my husband is alive and I'm thankful for that, but his mind is no longer here, and nothing will ever replace that.

So although I know that God has blessed me immensely and is my constant companion and Savior, and though He lifts me up every day to keep going, sometimes I do have to just sit by my broken red balloon and cry.

Depressing? Duh!

In the past few years, I've pretty much been in the "new normal" phase of caregiving - that is the phase where a well spouse has made some peace with the spouse's illness and has established a livable daily routine, with only intermittent crises.

The Lord has answered my prayers of years ago by filling my life with blessings, friends, and things to keep my mind busy and distracted from focusing on Vince's illness. So I go along pretty smoothly, with God's grace of course; however, every now and then I just get down, run out of steam, and I guess you'd just call that "depressed." It doesn't last long, and I have learned that it won't, so I don't get upset by it. That's when I stop and realize what I am really living with. I tell myself - Hey, my husband has a degenerative illness; he can barely move; he barely talks; and I have to take care of all his needs (with home health aides, of course, which can also be problems!) - we can't do anything together - NO WONDER I'M DEPRESSED!!! The miracle is that I'm not depressed all the time! And that miracle is by God's grace.

So if I feel temporarily down and out of commission, I cut myself slack because it is really very awful. Of course there are zillions of people with worse lives, but having a husband who always was and always will be practically lifeless is difficult!

I'm not depressed right now - I'm writing this because I think about it often, so thought I'd put it down. It's exercise time, and thank God I can still do that!

Health Care Reform

Here's my two cents on Pres. Obama's speech before Congress last night:

I believe that the President is very concerned about our healthcare system and how broken it is, and I believe he is trying with everything he has to correct it. He came before Congress last night, looking like a father trying to appeal to his fighting children to come to some agreements rather than the stupid bickering they've been doing. The stony-faced opponents to healthcare reform looked like spoiled, petulant children who don't want to share their toys with their less fortunate brothers and sisters; they want what they want and don't care what "Daddy" Obama says - their minds were closed to compromise. They have lots of money and power and are used to getting their own way.

Obama explained very clearly all the issues involved and what he said made great sense; there was a lot of compromise which brought together concerns of both sides of the argument.

What needs to happen is a change of hearts more than anything. If people did "what Jesus would do," there would be less disagreement, because people would truly work toward what was best for everyone. I'm afraid our democracy has become a money-ocracy in which those with the most money can buy the public policies they want - and those policies are the ones which protect their wealth and power, and to heck with the hardworking people who can't buy the laws we live under.

GRRRR!

Sometimes - like right now - I think the thing I hate the most about Vince's FXTAS is when he won't open his mouth when I have to give him a pill or see if he has swallowed it.

He has started taking Ritalin to see if it will focus his mind a little and wake him up a little. We started with four days of the lowest dose - a very tiny pill which I think is harder for me to get him to swallow than a larger one. We've done this pill in the morning and that has gone down, and I think has made him walk better and be a little more awake. Yesterday I had to up the dose to two pills a day (working up to three, starting in a week). I can't say for sure that he swallowed either of the second pills.

I made the mistake both days of not making sure every little crumb from lunch was out of his mouth - if anything is in his mouth, he will have trouble swallowing a pill. So I put the pill on his tongue, give him water, and the pill is still in his mouth somewhere!! Then he won't open his mouth so I don't know if he chewed it, swallowed it, or if it's just crushed somewhere between his teeth. He won't open his mouth, no matter what I do. So I told my aide to give him more water, and went off to calm down and pray that he in fact swallowed the pill.

I have to remember to clear his mouth before giving him medication - not that that's always possible without making me furious at FXTAS!!!! I don't throw fits anymore - I just walk away and pray - but I still feel hatred for this insidious illness when Vince won't do something simple like just OPEN HIS MOUTH!!

I know I've complained about this before, and I know no one cares, but this is my way of diffusing my frustrations. If Vince does stay on this medication - if it does in fact ever help him - I'll have to find a better way to get it into him. These little pills are horrible!! GRRRRR!

Giving it to God

Now that I know God is definitely up there (as well as down here with us), I have been really trying to hand my life and struggles over to Him, because I so often feel helpless and clueless with making up Vince's care as I go along - which is what it amounts to. With God's help, I have taken excellent care of Vince so far, and I hope He keeps leading me - of course God will lead me; I have to pray that I will be able to know what God is leading me to do.

It's been a relief lately that I have been able to hand to God trying to get Vince to walk. Sometimes Vince can walk - with lots of help from me and our aide - and sometimes not. I was having trouble trying to push it too much, and just getting myself upset when Vince wasn't walking. What I have started doing is - every time we get Vince up to walk (which is only a few times each day), I ask God that if it is His will, to please help Vince walk. If not God's will that Vince walks, I will have him sit in his walker or wheelchair and ride. This has worked well for me. Sometimes, Vince does walk, and sometimes not. But I know I have handed it to God; so when I get to the point BEFORE I stress myself out trying to get Vince to walk, I have him sit and ride the rest of the way. This has worked much better for me; and it's better for Vince when I don't push and get upset.

Sometimes God wants to do things for us, but waits for us to ask for Him. And if not, we have to accept His will, because it is ultimately what is best for us. God wants us to be peaceful. So many times over the past years, it seems that He tells me "Stop struggling." I know I have pushed too hard, because I want Vince to keep whatever strength and abilities he can. I just never knew where to draw the line. By handing it to God, I can know where to draw the line, and know that I have done all I could.

Sick of Celebrities

I am so very sick of the celebrity culture we live in. I receive a magazine called Neurology Now, a neurology magazine for families dealing with neurological illnesses. I am grateful for the free subscriptions they give and the articles can be informative. But every issue features a celebrity on the cover - a celebrity who either has a neuro illness, or has a family member with one. It's always how so-and-so-celebrity copes with their illness or is a supportive caregiver to a family member. I'll tell you how they cope - THEY GET ATTENTION!! TONS OF ATTENTION AND SUPPORT AND PRAISE FROM ADORING FANS. Not to mention the tons of money they have to hire the best help and treatments.

I know that I would cope much better with my caregiving situation if I got only a fraction of the attention the celebrities get. I definitely feel better about myself and about my situation on the occasional days when I feel supported by others. But I and most of the country's millions of caregivers do not get much attention. We are sidelined and often isolated, feeling invisible. Not that I want to be on the cover of a magazine being praised for caregiving - honestly, I would be embarrassed. I just want to scream that there are millions of sick people and their caregivers who are not getting the attention they need; many of them cannot even afford decent health care.

So, I need to keep realizing that in God's eyes, I am as worthy as any "celebrity caregiver," even though I am virtually invisible to other people; and my husband is certainly as important as any celebrity with an illness although he also is invisible to others.

There - I said my piece - now I will return to my anonymity.