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Just Sharing

Usually I have a theme for my posts, but not so today.  Instead, I just want to share what’s going on in my life because life doesn’t stop for a caregiver; it just gets busier and busier.
Lynn:  He has started to feel better from taking his Rebif. Hallaluyah!  It only took a year.  Though he still has fatigue, it’s much better; except for this past week. For some reason when pollen comes out each spring, it really hits him hard.  He needs about 25 squirts of saline mixed with nose spray every time I enter his room and sometimes twice while I’m there.  He has felt very tired all week and rather depressed. The depression leads to impatience and irritability so my tolerance has been stretched as well.  He seemed better today so I hope he’s getting adjusted.
Eli 146My grandson, Eli:  Poor little guy has been labeled with “failure to thrive.”  He’s 10 months old and the size of a five month old.  He has not gained height or weight in several months. He will only drink 2-3 ounces of breast milk at a time and if he eats solid food, he breaks out in a rash.  The GI specialist says his tummy probably has the same type of rash inside as he skin outside and so it hurts him to eat. He’s on an formula that has been added to the breast milk and it smells bad and must taste bad because he pushes it away as soon as he tastes it.  We’re trying to get him to drink at least as much as before adding the supplement but he’s really fighting it. If this is not successful, he may need a feeding tube.  It’s very frustrating and anxiety producing for his caregivers but the little guy is just as happy and loving as he can be! His smile is infectious and he’s a joy to be around. 
His mom, my daughter:  She bent over a chair Monday and broke two ribs!  She also broke her ribs bathing Eli when he was about two months old so now we have the added concern of why are her bones breaking so easily?  Bones don’t usually break unless an unusal stress or intense pressure is applied. She just leaned over the chair.  So, she’s having all sorts of lab work done plus a full body bone scan and a bone density test to figure out what’s wrong.  Though they do not suspect cancer, bone tumors or bone infection can be the cause of such breaks.
While she goes to the doctor, I keep Eli and Lynn.  A typical hour from such a day:
     Lynn:  “Sweetie, I need to pee.” (I pick up the baby, settle him into something he can’t get out of, cath Lynn and deal with whatever else he needs.  Meanwhile, baby gets fussy.)
     Eli:”Mamamamamam, (squeal), dadadadad, (whine)” hands reaching up, whining getting worse; he’s rubbing his eyes and needs his bottle. (I settle Lynn, go heat up the bottle, with Eli crawling around my legs begging for his milk that he wants THIS MINUTE)
     I rock Eli to get him sleepy so he won’t fight eating.  As his eyes start to shut, I remove his pacifier and stick in the bottle. Success, he eats 2 ounces.  I try it again in a few minutes- another ounce-and that’s all he will take.  I finish rocking him to sleep (he’s a very light sleeper; if you move he wakes up and is ready to play) I start to fall asleep (I’ve only slept six hours so I’m always tired) and after about 20 minutes, I hear:
     Lynn:  “Sweetie, I need to pee”  and we start over.
      I never ends…
My son:  He’s getting married on Friday at our house and having the reception on Saturday at our house so Lynn can attend and have a place to rest. So my house is covered in flowers and wedding preparations and every spare minute I’m busy working on something related to the wedding.  I’m taking next week off from work to get it all done because I’m WAY behind. I don’t even have a dress yet!  But I’m very excited and happy for them both.  It’s been a lot of fun helping them put it all together.
Me:  I’m seeing a surgeon on Monday.  My right thumb joint needs to be replaced.  I can’t really put it off any longer.  It’s painful all the time, I can’t open anything with it, I can’t grasp anything so I need to get it done BUT, what am I going to do with Lynn? I’ll need some respite care of course but I won’t know till I see the surgeon how long I’ll be unable to use my hand.  Ugh….I dread dealing with his needs more than I dread surgery for myself.  I don’t know how I’ll afford the continuous care but I’ll need to see if we can get help for 24 hours because I can’t cath him with one hand nor can I transfer him into or out of bed with one hand.  Wish me luck on this one.  May take several weeks to work this out.
My work:  busy as usual, still needing me when I’m needed at home. 
So as a caregiver, I find there are many ways I need to provide care and to many people. Lynn and my daughter for their medical needs. Eli for medical and baby care.  My son for sending him off into the world with his own family.  And myself. 
Who takes care of me?  God.  He provides me with what I need, when I need it and thank goodness for it.  
PS:  All prayers are welcome!

Disappointments and Guilt

This week has had several disappointments.  On Thursday and Friday, I was scheduled to take a course in Critical Incident Stress Management for my job.  I was really looking forward to it not only for the new information and skills but also for the opportunity to be back with coworkers and others for the day.  I got up at 5 a.m. and got Lynn and myself ready for the day.  I had a friend coming to stay with him from 9-2:30.  All was going well at first and then his stomach started grumbling.  Not a good sign.  I went on to the class with the hope that it would settle down.  At 3:40, I got a call to come home.  That was the end of my two-day training program.  Friday, I could not go in at all.  Disappointing but a necessity.  At least I got the training manual.
Saturday, my nephew was getting married in Northern Virginia. For me, that’s a 2 1/2 hour drive at minimum.  My daughter was supposed to go with me but she has not been feeling well all week so it was decided that instead she and her husband would stay with Lynn till his son could come help out when he got off work.  As you recall from above, Friday was not a good day for Lynn.  Since he had stayed up from 5:00 a.m. till I got home around 4:30 on Thursday, he had over-extended and in addition to the upset stomach, was exhausted on Friday.  My ride for the wedding (I didn’t want to drive alone that far due to sleep deprivation‘s impact on my alertness..i.e.  I get sleepy when I drive) called to make final arrangements and it was then that I realized just how long I would have to be gone.  They were going to pick me up at 10:00 a.m. and I would probably not get back till midnight.  The truth hit me then like a ton a bricks…I couldn’t go.  I would be gone much longer than Thursday.  Lynn’s stomach was still not totally straight.  I didn’t think my daughter and her husband could get him into bed and his son could not come by till around 6:00 pm. That would be too long without a nap. I couldn’t go.
I was very disappointed and I felt guilty.  My brother and his wife had bought me a suit as a gift so I could have something new to wear to the wedding; I had my parents cancel their reservation for Saturday night for accommodations since they were driving back with me after the reception so now they had no place to stay; and I’m big on family participation and here I was missing a major family event. On the other hand, Lynn is my responsibility.  I have to make sure his needs are met because if they aren’t a set back could occur which could mean loss of the progress he has made or worse yet, another hospitalization.  I couldn’t take that risk.  If I hadn’t already had issues on Thursday, maybe it would have worked out, but now, it was just too risky.
I cried a bit, started calling to find my parents another hotel to stay in since the one they were in on Friday was booked for Saturday.  I called my brothers to let one know I would not be riding with him and the other know that I had made reservations at another hotel for our parents because I could not come now.  (he had already heard about the problem and had made reservations for them himself so I canceled mine.)  The new hotel was right beside the one the rest of the family was staying in so it all worked out good. I called and canceled my daughter’s help and let Lynn’s son know he wasn’t needed and could now attend the party he had needed to cancel participation in so he could stay with his Dad.  It all worked out but it was disappointing none-the-less to give up a special family time.  I’ll live it though pictures and stories but it would have been nice to see it for real.
Guilt again on Saturday night when I got a call from my niece that my mother was on the way to the emergency room due to a fall.  She had hit her back hard when she fell and was having trouble moving.  My first thought was that I should have been there to make sure she was okay.  I called my brother who was following her to the hospital to say what needed to be considered if she was discharged so she could travel back today and what to do if she was admitted.  I have contacts at the hospital where I work that could help me get her transferred back to Richmond if she needed to be in the hospital so we could help out and Dad would have a place to stay. Fortunately that wasn’t needed.  She had no broken bones and was released with pain meds and muscle relaxants.  She and Dad will be coming here shortly and will stay with us tonight and longer if needed for her recovery.
So anyway, all worked out but I share this to say that as a caregiver, your life is not your own and making plans is only a tentative thing…you can never really plan.  Anything can get in the way and throw a major kink into the works.  But it usually works out.  I got to sleep in yesterday so I was more rested.  I always have about three hours of work to do for my job on the weekends so I got that done yesterday and will be able to visit without guilt when my parents and brothers get here shortly…and Lynn is feeling better.  He was able to get the rest he needed. His stomach has settled down, and he’s not feeling so exhausted.  So it’s all good.  It’s just a different good than what I had been planning, but still good.