Medical Decision Maker

Is That Your Final Answer?

Once you become a full-time caregiver to your spouse, the relationship takes on many new dimensions.  While in the traditional marriage roles, the husband takes care of the wife and makes many of the final decisions regarding big issues, if the one being cared for is the husband, and the one doing the caring is the wife, those roles often reverse.  That reversal has happened to me and my spouse, Lynn.  Though I try to maintain our husband/wife roles in our marriage, I have to admit that now that I do almost everything for him and our home, it’s really difficult not to just make all the decisions without including him.
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So Many Choices

Have you ever stopped to think about how many choices you make in a day? Mine start before I open my eyes

  • Wonder if Lynn will know I’m awake if I pretend to still be asleep?
  • What time do I really have to get up to be ready by xxx?
  • Do I want to get up now or just lie here?

Those are simple choices without much consequence.  Then as the day wears on, more difficult choices have to be made

  • Do I take this call that’s probably from work or just let it ring while I put Lynn in the bed?
  • I’m hungry but if I heat my food up now, he’s probably going to need to be cathed soon so it will get cold?
  • I really need to go to the grocery store but he’s so tired and feels so bad can I make it another day without xxx?
  • Do I agree to come in for the meeting or try to arrange it by conference call?

Those type of choices take more thought and calculation so the difficulty level is slightly more, but what I’ve encountered this week in talking with others who are caregivers is that often the choices are much more difficult and have a potential to deeply affect many.
One person I spoke to was trying to decide whether to limit the number of hours they worked in the office by going home at a certain time each day and hopefully finishing up from home.  While that sounds like a simple decision to make, if you’re a manager in an office and a crisis occurs, you have responsibility to see that it gets addressed.  If you say, “I have to go home to feed my xxx,” then you risk being viewed as being unreliable or not caring about your job. 
Those who are not caregivers don’t realize the internal turmoil that we caregivers often go through each day.  Each decision we make impacts not only ourselves but the one we are looking after and sometimes others as well.  For example, in my job I offer guidance to managers on issues often related to conflict or safety.  I often have to choose when to make a call or check for messages as opposed to answering a “call” from “down the hall” related to a comfort need.  While I often try to do both at the same time, there are times that I need to concentrate solely on one or the other.  In those situations, someone has to wait so I have to determine whose need is greater at any given moment and who might be at greater risk of harm if I don’t choose them? Making that decision often produces tension and anxiety into my day. But even when the decisions are not as potentially risky, every time I have to make a decision, it seems something has to be postponed or denied while something else is addressed. 
Do you ever get tired of making all the decisions?  I do.
On the other hand, making the decisions gives the decision maker power.  Poor Lynn is totally at my mercy to make decisions in his best interest.  Our relationship has to be solid so that he can completely trust that I will consider what he wants and do what is best for him, if possible, or as long as no one else is hurt.  I guess that’s one reason why when I make a decision that does not put him first, I have a twinge of guilt.  He doesn’t get to have the choice; I do.
There are times though that the one being cared for gets to have the final say.  I think about someone I know whose husband had to have his larynx (voice box) removed, shortly after suffering a stroke which paralyzed in his writing hand, and affected his eyesight.  He had virtually no way to communicate his wishes.  He made the decision to die.  He stopped all medical treatment.  He was of sound mind.  Faced with a lifetime of not being able to communicate, read or write, he just decided he had had enough and was ready to go home to heaven. His decision…not hers and she had to honor it–that’s tough.
As much as we might get tired of making decisions, it’s one of our most important functions as a caregiver.  We need to know what the person we are caring for values in life; what their personal preferences and choices would be in most situations.  Then we need to respect that choice even if it’s not what we personally would want.  This is especially difficult when you don’t agree with the decision or the decision adversely affects you in some way.  I’m thinking now about a conversation Lynn and I had today.  He’s still feeling lousy from starting Rebif.  I told him I thought that if he wasn’t feeling better by the end of summer, he needed to come off it.  He said he planned to give it a full six months which would be closer to the end of October.  I realize he needs to make that decision even though I, too, have consequences from his taking the medication (he feels worse so he needs more help, he’s depressed and angry at times, and I just hate to see him feel bad every day all day).  So sometimes not making the decision can be just as hard as making it.
One other decision, I recommend you make.  If you haven’t already, ask the one you are caring for to make you his/her medical decision maker in the event he/she can’t make their own decisions.  If you’re the legal next of kin maybe it’s not as important, but I’ve found that even now while Lynn’s perfectly able to make decisions on his own, that document gives me credibility when I’m talking to his medical team about options or trying to obtain information.  I highly recommend you get that signed in advance and give the medical team a copy.  It also wouldn’t hurt to go ahead and designate someone on your behalf as well.  That would be one less decision that has to be made later on….

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How Many Specialist does it take to Treat One MS patient?

As I have been reading blogs written by other caregivers or MS patients, that joke that goes around “How many xxx does it take to….” comes to mind.  When Lynn was first diagnosed, I had a basic knowledge of MS and figured that he would have a neurologist to manage all his care but what we have discovered is that specialists only manage their speciality.  If there is a hint of another problem, then Specialist 1 refers to Specialist 2. Often time Specialist 1 doesn’t talk to Specialist 2 and therefore, each Specialist does his/her own thing. 
Now, I’m all for having specialists because medicine is very complicated and I whole-heartedly believe that one individual cannot know everything about everything or maybe about anything.  In fact, the more I learn about anatomy and physiology (i.e. body parts and how they work), the more I know that I don’t know nearly enough. What I don’t understand, however, is why the specialists don’t all talk to one another.  
In theory, that’s what a general practitioner (i.e., Family Medicine or primary care physician) is supposed to do but they can’t do it unless the others all provide a summary of what they are doing as well and keep them in the loop.
When you have MS you will probably need most, if not all, of the following at some point:

  • A GP or HCP – (General Practitioner or primary care doctor) to handle colds, flu, new symptoms, oversee your general well-being, etc.
  • A neurologist – The one who will handle your medications for MS and in general treat your exacerbations and keep you informed about your condition.
  • A urologist – Often the water works don’t work so at some point you might develop bladder or kidney infections or have a need to self catheterize because it’s hard to keep your bladder empty or there are embarrassing leaks.  If bladder pressure increases and causes damage to the kidneys, then a nephrologist (kidney specialist) might also be needed.
  • A psychiatrist – People with MS often have depression or difficulty adjusting to the changes in their bodies and lifestyles.  It’s good to have someone to talk to and someone to manage medications so you might also have a counselor
  • An ophthalmologist – visual changes often occur and may be one of the first symptoms experienced that lead to the diagnosis of MS.
  • A physical medicine or rehabilitation specialist – to direct your need for physical therapy, occupational therapy, control of spasticity, ordering assistive devices, etc.
  • Pulmonologist – sometimes the muscles that control the diaphragm become affected and breathing difficulties occur.
  • Hematologist- many of the MS drugs cause decreases in the production of blood cells.  A hematologist can help determine how best to assist the body in reproducing the necessary cells or providing support in other ways.
  • Speech pathologist-often needed if swallowing or speech becomes affected.

Of course, once you get an autoimmune condition; other medical conditions often develop as well leading to more specialists….

  • hypothyroidism, which is the low production of thyroid stimulating hormone leading to the need for an endocrinologist
  • bowel or other GI concerns which may require the assistance of a gastroenterologist.
  • Heart arrhythmias or high blood pressure due to medications or anemia, etc. requiring a cardiologist
  • Surgeons to implant pumps to deliver anti-spasticity medications or maybe a feeding tube or nerve block.
  • Skin irritations, abnormal growths, wounds, dry skin…all of which might be addressed by a dermatologist.

Are you getting the picture?  MS can affect any “system” in the body.  Whenever the myelin degenerates due to a lesion eroding the nerve covering…whatever that nerve supplies will cause impaired functioning in that area this is no longer getting the necessary stimulation.  So essentially though there are often well-known symptoms of MS, any organ or body part could be affected.  Any new condition could be MS related or it could be a new condition separate from MS all together. 
So the thing to keep in mind here is that the only one who really knows the entire story is the patient and the caregiver.  As Lynn’s caregiver, I keep a book of when he saw which doctors, what he was seeing them for, what they did, etc.  I keep track of all his medications and take a revised list to every appointment with every doctor.  When a new therapy is needed or a new symptom comes up, I try to remind the “specialist” about all the other issues that might be influencing the situation. 
 Therefore, you (and the patient) are the experts.  You know more about your “patient’s” body and what works and what doesn’t work than anyone else.  As Lynn started telling his doctors when he was in the hospital, “you know your specialty but I know my body so whatever you want to do, we need to decide together.”  You have a right as the patient or as the “medical decision maker” to say “no” or to suggest a different course of action.  However, it’s also important to realize that they actually do know more than you do about the speciality so don’t totally dismiss what they suggest.  Just know that you know how you react and feel and that you are an essential component to the success of any treatment plan.
 So, how many specialist does it take to treat one MS patient?  The numbers may vary but the most important specialist is you (the big YOU meaning both you and the person with MS).  If you feel you need something…ask.  If you don’t understand what they are talking about, ask them to put it in simple terms so you can understand.  Each medical profession has its own language so don’t feel dumb if you don’t know what they’re saying, chances are they can’t talk whatever your language of expertise is either.  So ask!  Get what you need, check behind them, and if you’re not satisfied, find someone else.  It’s your life and the life of the one you’re caring for… so do what you need to do.

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