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Fear of the Future

Originally posted at MSCaregiverDonna July 24 2011

Ever since Lynn almost had to go on a ventilator in May, in the back of my mind I wonder what to expect about the future.  I seriously try to just look at what today holds for me but whenever plans need to be made, I can’t help but worry.  I can’t share this with Lynn.  If I do he thinks I’m being pessimistic and that I don’t think things will turn out well. It makes him depressed because he thinks I think he’s not going to get any better… so I can’t talk to him about my fears…but they are there.

We’re going on vacation.  I so want him to have fun and enjoy it but I’m afraid he won’t. I’m afraid he will feel bad and not be able to go fishing and not want to participate and be absolutely miserable. He will try not to put a damper on it for anyone but I’ll know and I’ll stay close by and I’ll just want to be home rather than there. That’s my fear for vacation.

We’re looking at building a new home.  I want to be excited and make plans but my fears are there in the back of my mind.  Will I be able to continue to work full-time so that I can pay the bills. The house we live in now needs so many repairs to be able to be put on the market.  How can I pay for that and a new house too?  Right now I’m working from home full-time.  What if my job needs me to be on site and I can’t work from home anymore?  Who will take care of Lynn?  He cannot be alone for more than an hour by himself.  His son is starting a new full-time job. Both my kids work full-time.  He’s a big guy and needs a lot of help so not just anyone can stay with him.  So what would that mean?  A full-time licensed caregiver while I’m at work?  Insurance isn’t going to cover all that.  I won’t be able to afford a caregiver and paying to get a house built.  See where my mind goes?

Sometimes it gets very overwhelming when I think of all the responsibility and how dependent he has become on me. I miss having the freedom to sleep a full night without having to get up to catheterize him or put him on his peddler because his leg is spasming.  I miss being able to go to a store and shop.  I have four gift certificates for a massage but I can’t be gone for the two-three hours I would have to be away to be able to use the certificates (and my muscle spasms in my back from lifting him by myself are constantly painful so I could really use the massage).

So what do I do when my mind starts going in those directions? I tell God it’s His.  I can’t handle it and I’ll just have to trust He will take care of it when the time comes.  Otherwise I would just go mad.  But that works and I keep being able to cope and keep having hope.  Thank goodness for faith in the fact that He will help me when the time comes. He always has.

Standing Beside His Bed

Introduction:  I wrote the following story about a time in my life when I was waiting at Lynn’s bedside to find out if he was getting better or worse.  I submitted this story to a writing contest at work and won second place. However, I wanted to share it with you because I think many of you can relate to it.

Standing Beside His Bed

Standing beside his bed, watching the rhythm of his breathing, the irregular up and down motion of his chest, I think of where we have been and where we may be heading. Watching and waiting for that next breath. Listening to the rumbling of secretions he cannot clear on his own, it is strange being on this side of health care.  For years I was on the other side; the one checking the vital signs, assessing the patient for changes indicating improvement or decline.  For years, I was in control.  Now, I’m on the other side…waiting…watching…hoping…alone in his room; his strength when he has none.
I learned about multiple sclerosis in nursing school years ago, but the overview in the textbook in no way prepared me for the reality.  Before, his MS became so progressive, the rhythm of our lives was moving along, flowing with the usual ups and downs, sometimes riding high on a wave of happiness but often feeling the plummet as the wave crashed down again and new symptoms emerged.  Up and down like the ocean currents; in and out, requiring us to develop a new “normal” to the rhythm of our lives.

What is a normal rhythm anyway?  For us, it’s taking each day as it comes, each moment as a blessing of time God has granted us to be together and with our family. As the ebb and flow of the disease takes control of our lives, we adjust to a new normal; a new way of adapting; a new rhythm of life.

Standing here I pray for strength and mercy. I pray for wisdom for his healthcare team.  I pray that they will not see him as a diagnosis but as a person with his own needs, his own hopes and dreams.  I appreciate them letting me be part of his healthcare team; for them allowing me to be his advocate and for them listening to me … because I know him best.  I know the subtle changes; I recognize a difference in rhythm or color or sound that mean improvement or decline.
And I continue to wait and watch.

The doctors, nurses, therapist, and so many more come and go.  They warn me the next thirty minutes will decide; does he go on a respirator or is he stabilizing.  If he goes on the respirator, he may never come off; his lungs are just too weak. So I wait…and watch…and pray.

Do I notice a change?  Is the rhythm of his breathing less erratic, somehow less labored?

The medical team comes in and draws yet another tube of blood.  They come back smiling, “It worked. His gases have improved.  Let’s see if he continues on this path. Maybe we can avoid the ventilator after all.”

I say a prayer of thanksgiving.  My fear that this was the beginning of the end or the beginning of a lifetime on a ventilator is fading away.  The rhythm of my heartbeat slows to match the rhythm of his breathing and once again, the normal of our lives change and we move on to the rhythm of a new normal in living with this life sentence of MS.

Hayek Ventilator

An example of an external ventilator.

In late May 2011, Lynn became very sleepy.  He was so tired he could hardly stay out of bed.  I listened to his lungs, and they sounded very noisy in some areas and almost no movement in others.  His home health nurse thought we should go to the ED, and finally, even he agreed.  We went in on Friday, and he entered the Neuroscience ICU immediately.  On Saturday, his blood gases were so bad that had his gases not improved within a particular 30 minute period, they were going to intubate him and put him on a ventilator.  They warned me that if that happened, he might not be able to come off because his lungs had gotten very weak.


That was the first time that I actually got scared about the possibility that Lynn might die.  I was alone at the hospital, but I had lots of support there. I had many friends among the staff members and knew they were all doing their best.  We had one excellent Respiratory Therapist that was keeping watch on him, so I knew he was in good hands.  However, I couldn’t trust that those hands were enough, so I sent out a call for prayer to several people.  When I got back messages they were praying, Lynn started to wake up, and he started making progress toward getting better.


Lynn hated the mask he had to keep on to help him breathe, but if he took it off, his oxygen levels became too low. God was again looking out for us because the Respiratory Therapist knew about a new device that she had seen used successfully for cystic fibrosis kids and ALS patients.  It was called a Hayek ventilator.  It works on the iron lung principle, but it’s very lightweight, and the patient can move around with it if needed.  She helped get it for him, and he found it to be very comfortable and an effective way to support his breathing without a mask!


Now that his lungs are better, he uses the Hayek only at night in place of BiPAP. (Bipap is like Cpap – continuous positive pressure, but it also delivers intermittent breaths).  I put the Hayek over his chest when he goes to bed, strap it on, so there are no air leaks and turn on the machine that pumps the air in and out.  As the force of pressure pushes down and releases on the chest, breathes are drawn into and out of the lung (inhalation and exhalation). The only thing uncomfortable is that it makes him feel cold (but he has hypothyroidism as well, so he’s susceptible to cold.)

 

If your MS patient has any respiratory issues or even sleep apnea that doesn’t respond to CPAP or Bipap, check this out.  Go to www.Unitedhayek.com  It made a difference for Lynn.