2016 Blog Posts

What Goes In Must Come Out

One of the joys of having a progressive disease is that everything changes. Just as you adjust to one change, something happens and the “fix” you had in place is no longer working. As Lynn’s caregiver, I have not found his physician to be particularly helpful in warning me about things to come. If I ask about an issue, he will give me a prescription or a referral but he’s not much on home remedies or being proactive on warning on what I might encounter. Therefore, most solutions I come up with are things I stumble across and come up with myself and are not recommendations by doctors so you might want to talk to your doctor before you decide to do anything I mention here. Now, my take on waste management… Continue reading at  https://multiplesclerosis.net/caregiver/what-goes-in-must-come-out/

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Realities of Life

For the most part, our home life is fairly stable meaning we have the same things happening day in and day out. We have a routine – I get Lynn up for the morning and help him with his exercise, take him to the bathroom for his bowel regimen, put him back to bed and do a partial bath including skincare, and he takes a nap to recover from that activity. It takes about three hours to do all that. None of it is complex (except sometimes the skincare) but most of it is very physically demanding and Lynn can do nothing to help with it except cooperate with what I do to him. Once this morning routine is completed, the rest of the day is pretty basic attendant type care (assist with eating, getting things to drink, changing position, helping him write, etc.). At night, the work increases again

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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.

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Something New to Deal With

Every time Lynn starts acting differently for several days in a row, I start to wonder if it means there’s some new problem we have to face. MS can affect so many different body parts and functions that I just never know if a new problem is MS or something else. For instance, Lynn has been sleeping a lot. He talked to his dietitian who thought he needed more protein in his diet; so, we added two protein shakes a day. He loves them and he is putting on a little more weight (he lost a lot dieting and not tracking how much he was losing) which is probably a good thing, but he still sleeps much more than he used to sleep. Now, I know MS causes fatigue and I know that our sleeping habits are poor because he wakes so often to empty his bladder but is this just

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I’m No Angel

I admit my life is very busy and very difficult. I also admit I manage it pretty well, but just because I have to do some pretty difficult tasks day after day and I keep doing them, doesn’t make me an angel. I realize that most people who are not full-time caregivers are amazed at what I do and how I manage but that just means I know stuff and I have abilities and that God blessed me with a servant’s heart that allows me to meet these challenges without quitting. It does not make me an angel. I bet if you’re a caregiver, you’ve been called an angel a time or two, also. It’s a compliment that is intended to reward you for all your hard work, and I admit, it sounds nice, but when someone tells me I’m an angel, I’m embarrassed and I feel guilty because I’m

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Feeling Alone or Maybe Just Left Out

I always have guilt• feelings of deserving blame especially for imagined offenses or from a sense of inadequacy; • a feeling of deserving blame for offenses; • the fact of having committed a breach of conduct especially violating the law and involving a penalty… More feelings when I write about any negative emotions I feel in being a caregiver but the fact is, I have them and I expect most other caregivers have them as well. It doesn’t mean we don’t love the person we care for but it means that providing care is not always a piece of cake. If you’re a parent, it’s similar to loving your kids but being angry at them for scratching the car and sometimes seriously thinking of selling them to the lowest bidder. You would NEVER actually do it and would miss them beyond words if they were not around but the fantasy…well, sometimes the

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Lack of Sleep. The Root of All Evil?

There are a lot of responsibilities and consequences in being a caregiver that I don’t like; things I would prefer not to do or which are difficult to manage, but the biggest challenge I have is lack of sleep. I think that if I had time to sleep more, my life would be a lot different. Typically, I get five hours of sleep a night. If I were to have an opportunity to sleep through the night without interference, I would probably naturally wake up after nine hours. Nine hours is more like the “sleeping in on Saturday morning” days I remember back before children and back before Lynn became disabled. When I was going into work in the days before Lynn became immobile, I usually got eight hours and certainly at least seven of sleep a night unless someone was sick or we had been up for some special occasion. I

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Confessions of a Stressed-Out Caregiver

Often when I meet someone who has just become a caregiver, they ask me how I do it; “How do you handle the daily stress of working and caregiving full time while still managing a home?” I always reply, “I try to take it one day at a time and just deal with what’s happening that day.” Pearls of wisdom, right? Well, I’m here to confess, I apparently don’t deal with stress very well so I’m not sure that I should be giving anyone any advice on this subject. I’ve been caring for Lynn full time since 2009 and I can tell you, it’s starting to take its toll. Here’s my confession. I do not take things one day at a time. I try to but I’m not very good at it. continue reading at https://multiplesclerosis.net/caregiver/confessions-of-a-stressed-out-caregiver/

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Blessings from Pain

I’m sure you have heard others reference the saying “turn lemons into lemonade.” It implies taking something bad and turning it into something good. Our pastor challenged us to think along those lines but with a different twist. When something has you down or something bad/inconvenient happens, try thinking about why that’s a good thing. I have to admit I have difficulty doing that much of the time but each day I try to think of at least one thing good about that day, be thankful for it and share it on my Facebook page. It helps me to, at least once a day, think of something positive. I’ve been pretty negative lately because Lynn and I have not been feeling well and I’ve spent three weekends in the last two months in the emergency department without any answers regarding what is causing me to have abdominal pain. I know it’s

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Give Me a Hand

Someone asked me recently if I had ever written about how we adapted to Lynn’s loss of function in his hands. I haven’t, but it’s a topic that might be helpful to some, so here goes. Lynn’s loss of the use of his hands gradually progressed over time. I’m guessing the decline occurred over maybe 3-4 years with generalized weakness initially and now no strength to speak on either side. He has almost no function in his left hand/arm and minimal in his right hand/arm. I think he started noticing a decrease in responsiveness about the time of his 2006 diagnosis. I say that because I came in one day to see him comparing the speed at which his fingers would move between the two hands. It was that sight that made me realize that his weakness was not just in his legs. I demanded that he see a doctor

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I Just Keep Going and Going and Going

In the past month, I have been taken to the emergency room twice with severe abdominal pain and vomiting.  Each time they ruled out appendicitis (thank goodness) but obviously, something is wrong. At this point, they believe I have two locations in my intestines that are infected which is causing the pain so I’ve been put on two very strong antibiotics that may kill me before the ten-day treatment is up. Each day I struggle to keep going. Each day I battle nausea and the discomfort caused by the antibiotics. Each day I have to find a way to get everything done that Lynn requires because if I don’t, it won’t get done. People tell me to call if I need help and I have and they have but they can’t be expected to stay here 24/7 while I recover. They have to work. They have home responsibilities. They have their

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What Resources are Available if I’m Not Around Anymore?

About this time last week, I was experiencing discomfort in my abdomen. As the hours progressed, the pain got worse until eventually it was so intense that I was vomiting. Unable to sit up, I was lying on the floor moaning in pain with no access to help within reach. Fortunately, Lynn heard my moaning and used his emergency response button to call for help. The dispatcher was able to summons the rescue squad and contact my daughter to come to our house to stay with Lynn until his son could arrive to take over (she has a special needs child she had to get home to before her husband left for work). As I lay on the floor in agony, what was going through my head? I need to find a break between vomiting to put a Foley catheter in Lynn or his bladder will become too distended. I waited

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Helpful Resources for Supplies, Equipment or Information

With Relapsing-Remitting MS (RRMS), Lynn would have an exacerbation that could last days or weeks, but he would return to “normal” at some point, and nothing much changed. With Secondary Progressive MS (SPMS), he stopped getting better. He happened to be in a clinical trial at the time he transitioned to SPMS, so he was seeing his doctor every three months and getting the full-court press evaluation. We started noticing that his scores were getting worse over time without any evidence of having had an exacerbation. He was not walking as far, and his strength was less. Response times to questions got worse, and overall, he seemed to feel worse most of the time. That’s when his doctor decided his MS had changed from RRMS to SPMS, and we realized we needed to look into making changes in our lives. We were not fortunate enough to have a comprehensive approach

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Caregiver feelings of depression, being overwhelmed and lonliness

Waiting for the Next Shoe to Drop

I was talking to a fellow caregiver this week about an event that occurred to him and he made the comment, “Yeah, I’m just waiting for the next shoe to drop.” That comment really struck home. I confess; I’m like that most of the time. Lynn, my husband and the person I provide care to, accuses me of being pessimistic but honestly, if I don’t expect the worst, then I won’t be prepared if it occurs. It’s a matter of self-preservation from my perspective. I do admit though that I can take it too far. Scenario: Lynn has gotten a double dose of baclofen in his pump to reduce the number of spasms. Baclofen is a muscle relaxer. Not only does it relax muscles, it makes him sleepy. Therefore, he sleeps h-o-u-r-s at a time, wakes up to eat, and then goes to sleep again. My, “what if,” talk in my head

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It’s Snowing

It’s been the talk for days. “Have you heard? We might get a foot of snow.” The prediction was for it to start before sunrise on Friday, then changed to 10 a.m., and then to 1 p.m. Two days before the snow was predicted, lines at the grocery store were wrapped around and down aisles. All were preparing for the great storm to come. For those of you who live in the north, a foot of snow is, “Much to do about nothing,” I’m sure, but for those of us in Central/Eastern Virginia, we rarely get deep snows so for us it’s truly a big event. There’s a mixture of excitement but then also dread for the days after. Our road and power crews do an awesome job and truly do their best to keep everything moving but since snow storms happen so rarely, they only have so much available to them.

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I Can’t Just Get Sick

I had a scare this week thinking that I was about to experience the joy of food poisoning. As I was giving Lynn his bath, I started feeling really nauseous. Then my stomach starting burning and feeling crampy and I started sweating—all the tell-tale signs of food poisoning when you’ve recently spent hours sampling leftover food as you clean up from the day’s festivities. As it turned out, it did not develop into the dreaded torture of food poisoning and probably was a reaction to eating too many rich food products the same day on top of eating them several days previously. However, the experience brings into focus that as a caregiver, I can’t just get sick. As I’m preparing to be sick, I have to prepare Lynn for me to be sick. Let me tell you; that just does not seem fair…. Continue reading at https://multiplesclerosis.net/caregiver/i-cant-just-get-sick/

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We Survived Christmas, But Just Barely

Christmas is now officially over and it’s with mixed emotions that I say goodbye to it for another year. I love the Christmas holidays. I decorate everything in sight. Since we don’t go out very much, we miss most of the festive sights so I bring it to us instead. I can’t outline the house in lights but I put up trees sparkling with white lights all along the front and in front of them I have bunches of red and white poinsettias grouped every two feet with stick trees lite in white behind them. Lots of garland can be seen draped on porch rails with white lights running throughout. Electronic deer and a snow family grouped among trees with the Holy Nativity established in the place of honor at the entrance to our driveway greet visitors upon their arrival. Yes, my house could be on the tacky light tour

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