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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The Blessings of Children

Elijah Gregory moments after his birth

May 27 at 3:51 p.m., my daughter gave birth to a beautiful son, Elijah Gregory–Eli for short.  I was fortunate enough to share in the experience with her and her husband and at the moment of Eli’s birth, my daughter weep tears of joy, as did I. 
The decision to have a child was not easy for her.  Though she does not have MS, she has a chronic health condition that has dominated her life (and mine) since she was five years old.  The condition has required multiple medication adjustments, much lost time from school and work, and interfered on more occasions than I can remember, with being able to enjoy plans made.  It made her different from her peers, which created many difficulties for her as a teen.  There have been many tears and many discussions about the quality of her life…but we made it through those times.  Her condition is now controlled on medication that she must take every day for the rest of her life and it still is a factor in all her decisions but she has matured into a beautiful and kind young women, with a deep sense of responsibility, and wisdom beyond her young years.  She is very fortunate in that she also has a very devoted husband who is unbelievably understanding and supportive of her.  Now he has taken over my role as her “rock” and together they face their future.
I share all this as background for her decision to have Eli.  She knew her pregnancy would be difficult and there was a risk that the medications she was on could cause birth defects (thankfully that does not seem to have happened) so she worked with her doctors to prepare her body, her mind, and her spirit to take on the challenge of having a child.  For her that decision was the right one but for some people with chronic health conditions, the prospect of reproducing and sentencing a child to the same possible condition is not something they can do.  Neither decision is wrong; both decisions are right…for those individuals.
As for my daughter, she has a strong faith in God and has learned to rely in Him to help her through the difficulties of this life.  Though she certainly does not want to invite hardship, she also knows that her strength comes from the courage He has given her.  Her life experiences, though very difficult, have prepared her to face what may be ahead since she probably won’t know if Eli has her same condition for several years yet.  However, if he does develop it, who better to help him through it than his mother who can not only empathize but coach him in how to cope with it?  That is true for any person thinking about having a child that might inherit a serious condition.  There are some conditions, that I am sure would cause her (and me, too, if faced with the choice) to decide to adopt.  In fact, she may decide to do that next time.  But it’s okay either way.
My step-son knows that he may very well develop MS as he gets older.  His father and grandfather both had it so his changes are significant. When he asked his girlfriend to marry him, she and I talked about their having children.  They are fully aware of the risk of inheritance and that he may end up as his father but we also know that new medications and treatments are always in development.  BECAUSE of his father, he’s prepared.  He knows what things seem to reduce the risk and what to stay away from; he knows the symptoms and when to seek evaluation; he will know what to do if the time comes that he has to face the prospect.  Plus, like with my daughter, he will know that his father and I are here to help out anyway was can and that God will bless them whatever the decision regarding children may be.
I belive that each challenge we face in our lives prepares us for what lies ahead.  We gain strength, knowledge, and courage with each obstacle we overcome.  Life is hard…no doubt about it.  I truly wish and have prayed often that these burdens be removed from Lynn and from my daughter and that He would protect our other children from them as well. However, I know that we are not alone.  I know that this time on earth for us is like a speck of dust compared to eternity in heaven.  I know that although we have trials and difficulties and get depressed and hurt that I love this life we have.  I feel so blessed to be married to Lynn and to have two wonderful children of my own and an awesome stepson.  I love the partners my children have chosen to share their lives with. I can’t wait to spend time with my grandson and to share with him all we have learned that might be helpful to him on his journey through life.
I am very thankful my parents decided to give me life.  I am very thankful that God blessed my decision to have children.  And now I’m thankful that God has given my daughter the courage to face the unknown and to share her love and commitment to Christ and to her family with a child.
Yes, for me and my family, having children is truly a blessing for which we are thankful.

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