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!

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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3 Responses to Just Sharing

  1. Wow, it sounds like you’re having quite a time. You’re in my thoughts. Good luck with everything.

  2. Sandra Lawson says:

    Hello Donna, Mama was keeping me posted on your blog; now I’m connected 2 u…..lol…..mama made me a book of the events n your life……We got the greatest MOM’s & Dad’s ….. u & I know sisters rule…..Hate to hear about so many special needs your family’s going through…..Used to keep up w/Lynn’s page……wondered why I hadn’t seen any updates, until Mom gave me my book….Luv U……hate u r so far away, could @ least help u some…..hav u considered selling house & all u guys moving back to mountain valley (“Greatest Green Earth, Near God’s Heartland”)….. I work w/MR individuals & just luv it, also live w/disabled hubby (had 5 surgeries on right leg-still can walk-no feeling, if hit leg or foot on something; but is n pain all time). My live of troubles sounds so trivial to your’s…..luv u ….chat soon …..Sandra – Ann’s daughter (oldest)

    • mscaregiverdonna says:

      How nice to hear from you! Mom told me you were working with special needs people. That’s really awesome. I’m so sorry to hear that your husband is in constant pain. That is especially difficult to handle. I don’t see us moving back to Franklin Co at any time due to all our medical resources and children are here; plus I still work full time in a job that would be very difficult to replace but I think of “back home” often and especially miss seeing the blue ridge. Thanks for sending me a note.

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