Caregiver Perspective: Did You Miss Me?

Some of you have noticed that I have not been writing for a couple of months because you have sent me messages asking if I was okay. Thank you very much for checking on me. It’s humbling to know there are people that I don’t even know who care about me and lift me up in their prayers. Thank you.

It’s been about two months since I last wrote. During that time I have been in the emergency department three times for abdominal migraine attacks that I could not control at home. I started having attacks of severe abdominal pain in February. Initially the ED staff thought it was appendicitis but that was ruled out on CT. The next time it occurred in March, they thought maybe I had an intestinal infection because they could see two areas of thickening on the CT and my white blood cells were elevated. I was given a course of antibiotics and an anti-fungal (to be on the safe side) and survived the additional trauma of a two week encounter with their side effects. I was feeling pretty good about things when in May it happened again and the ED doctors said they didn’t have a clue what was going on; I should see a gastroenterologist.

It took a while to get a specialist appointment but I saw someone around the first of June. Five minutes into my visit, he said, “You have abdominal migraines.” What in the world is that? I thought to myself. He went on to explain that they are similar to headache migraines; same mechanism of action. There is usually an aura (Yep, I had that), they come on and get progressively worse and then go away with or without treatment (that seemed to be true), and between episodes everything was perfectly normal (Yep, that was true, too). Abdominal migraines usually affect children but can affect adults who have chronic migraines as well (that was me). Great, I now had a diagnosis and a series of medications to try when I had an attack. What I have found so far though is that the medications are either not strong enough or I’m waiting too long to take them. As with every new diagnosis, there is always a learning curve required before you find the right treatment plan.

So, what has this got to do with being an MS caregiver? Everything. Being a full-time caregiver with only yourself and the one receiving care living in the house, when the caregiver is “going downhill,” then the one being cared for also has to be considered. Caregivers do not have the luxury of just thinking of their own needs (basically like being a parent). I’ve learned to recognize some of my warning signs for this new issue so I try to put Lynn on notice when I think I might be getting ready to have an attack. However, it seems that often there are several hours before the aura turns into an actual attack. Since I have irritable bowel syndrome (IBS), too, I can’t always tell which is which so I wait till the symptoms are stronger before taking action. Deciding when to start treating symptoms as a migraine vs. IBS can be tough. If I’m about to have an attack, I know I have to put an indwelling catheter into Lynn. He needs to be out of bed, haven eaten, have resources close by in case he needs something, and I have to deal with his emotional concerns about my well-being. I don’t want to actually do all that and upset our delicate schedule unless I have to so I wait to be sure.

When I realize finally “this is it,” I take all the steps noted above, I start my medication and I pray it will work. The symptoms are a mixture of birth pains and stomach flu all rolled into one fun evening.  I try to hold out and ride the storm but the symptoms can last from 2-72 hours. Mine seem to last about 12-18 hours. After a few hours of lying on the floor moaning in pain, vomiting my guts out and wishing I was dead, I give in and push the emergency alert button I wear. I wear an emergency alert button, as well as Lynn, because let’s face it, if I need help, he can’t do much to assist. With that push of a button though, my “emergency response team” leaps into action. Lynn tells the dispatcher what I need. The dispatcher calls for an ambulance, calls my daughter to come over and calls Lynn’s son to come. I live in a rural area that only has voluntary ambulance crews so it may take an hour to get anyone to come do a transport. I am in too much pain to drive myself and my daughter has to stay with Lynn until his son can come relieve her from an hour away. She then leaves to go back to her special needs child and Lynn’s son takes over his care. I go by ambulance (a $700 ride since I live almost an hour from the hospital) and get treated, then call my son for a ride home. He takes me home, everyone leaves, and Lynn and I are home alone once again to recover from the day’s or night’s events. I usually sleep off medication and then am back to being a full time caregiver.

However, I never actually cease being a caregiver. While away I still get text messages about his care and what is needed in my absence. Our kids are great and they are becoming very knowledgeable about his care with all my recent ED admissions but there is so much that goes unsaid that needs to be communicated in transferring care from one person to another. After our first really stressful ED weekend, we came up with the following plan:

  • We do all the notifications I already mentioned to get everyone in place
  • I keep an emergency folder of information in a place they know where to look and also email them information for their own files
  • Only essentials need to be done
  • If they can’t provide his care, I have the name and number of some area home health groups.

So far, this has all worked out but I have to wonder what would happen if I fell and broke a hip or an arm and couldn’t provide his care? I would prefer he receive in-home care but since he’s not the one sick, it would not be paid by insurance. He could go into a rehab or assistive living arrangement but that takes time and is very expensive. I hope to never have to figure that out but know that if I do, God will help me find the resources I need and we’ll be fine.

There you have it; where I’ve been. There are a lot of other contributing factors that have kept me away. My job is VERY stressful right now (I’m working 7 days a week from home), I have a new 4-week old grandson (yes, he’s adorable), Lynn has been really tired and needing more attention, the person who helps me with meals (Lynn’s sister) is not able to do so because Lynn’s Mom is in the hospital recovering from pneumonia (has been in a month so far) and I try to periodically visit my Mom who lives five hours away and is on hospice. Life’s busy; but then it always is.

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