Adapting to caregiving may mean changing your living room into a bedroom to accommodate a hospital bed and learning to rearrange your life to adapt to an entirely new lifestyle.

Whom Do I Choose?

I am feeling so frustrated tonight because my good sense tells me not to do something I want to do, but my heart is longing to do it.  Here’s my dilemma.  I want to be a caregiver to two different people (actually three), and it’s tearing me up that I can’t.

My grandson is very sick tonight.  It probably won’t amount to anything, but he’s only six months old and has a very bad upper respiratory tract infection.  He can hardly breathe, his mucus drainage is so thick he’s choking on it, and he can’t drink (he’s only had nine ounces of milk today), so he’s becoming dehydrated.  His mother (my daughter) is scared to death. Her husband’s cousin died at this same age of an upper respiratory infection, and she’s afraid it will run in the family, so she doesn’t plan to sleep until he can breathe.

She had him in the emergency room last night, unable to breathe, and she’s had him to herself all day today, so I’m sure she has not slept since yesterday.  That means whether she wants to sleep or not, she will at some point, and when she does, she needs to ensure that little Eli is safe.  I’ve coached her on some tricks-of-the-motherly trade to help her with the approaching night (everything from power aide for hydration to sitting in the shower steam to open up his head).  I’ve suggested using the carry sling to hold him against her tonight so that the baby will not fall off her chest when she falls asleep.  I’ve offered prayers and my limited experience to her over the phone, but what I want to do is to go over there and keep him for a while so she can rest. But I can’t do that…

With MS, one of the big risks is contracting infections.  MS is an autoimmune disease, meaning the immune system does not function properly.  People with MS must avoid getting sick because it’s more difficult for them to recover.  Lynn, for example, will take a month to recover from something most people are over in three days.  His lung capacity is compromised due to weak diaphragm muscles.  Therefore, if he gets a cold, he has more difficulty coughing up secretions and keeping from getting pneumonia.  Therefore, we don’t go out much in public during cold and flu season to limit his exposure.

We were already exposed to Eli all weekend.  I kept him Saturday afternoon and then again Sunday morning.  At those times, he wasn’t eating much, but he did not appear sick.  He was happy, breathing well, and sleeping without any congestion.  I was very surprised when his Mom called to warn me he was sick and Lynn had been exposed.  Oh well, you can’t avoid everything.

But here again, MS gets in the way of what I want and need to do.  I want to help my daughter and grandson, but I can’t because Lynn is my first priority and responsibility.  I worry about my responsibilities getting in the way of meeting the needs of my other family members, too.  My parents are around eighty years old.  They are very healthy still but every time the phone rings, I’m afraid I will hear that one of them is sick or injured.  I want to be by their side, but what will I do with Lynn? If I take him with me, his wheelchair can’t go into their home. He couldn’t stay alone at a hotel because he couldn’t do anything for himself.  I could get someone to stay with him, but no one in the family really knows how to care for him 24 hours a day, and besides, everyone works or has other responsibilities.  I could have my parents brought here, but I know they would not want to leave home.  It bothers me greatly because I’m torn between who I get to help when I want to help them all if they need it.

So, I deal with it by not thinking about it.  (visions of Tara and Scarlet O’Hara run through my mind…”I won’t think of it today.  I’ll think of it tomorrow.”) I know I’ll have to make a choice one day, but that day is not today.  I pray I’ll make the right one where I can do the best and the least damage.

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