MSCaregiverDonna Blogs

Blogs previously published on my MS Caregiver Sharing Website when I first began writing about my caregiving experiences after Lynn was diagnosed with multiple sclerosis in 2006.

Can You Speak?

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I recently needed to use that phrase in a way I had hoped never to have to use it. No, my husband did not need CPR, but he was unresponsive. He had lost consciousness while being moved using a ceiling transport device and slipped out of the harness to fall four feet landing first on his shoulder followed by his head hitting the ground and bouncing up to slam into the door jam on the opposite side.

After hearing the thud and his caregiver’s cry of alarm, I ran to their location to find him unconscious and using a breathing pattern typical of someone who has had a seizure. His eyes were open but unseeing. My attempts to get through to him included shouting, “Can you hear me?” “Can you speak?”

Continue reading at: https://multiplesclerosis.net/caregiver/can-you-speak/

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Something’s Different. Something’s Not Right. Listen to Me.

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Caregivers need help finding answers

Something’s different.
Don’t you hear that? Don’t you see the difference?
It’s not the same.
Something’s wrong.
Something’s changed.
Trust me, I know. I can tell. It’s not right.
I don’t care that the lab work is normal.
I don’t care that he looks good to you.
I don’t care that you’re an expert in illness.
I am the expert on him.
In our world of daily living.
We are one. I know something’s wrong.
I know his every breath.
I know what every sound means
I know where every pimple, pink spot, dark bruise, or open tear appears.
I know his smells-good and bad.
I know his body temp-good and bad.
I know his moods-good and bad.
I know his changes-good and bad.
Just like an artisan working his craft
I am an artisan of healing in his life.
I know him.
I know what works and what doesn’t.
I know how best to apply healing.
You need my help.
I keep you from making mistakes.
I stop you from assumptions that harm.
I am your partner, Not your enemy.
Use ME.
Something’s different.  Something’s not right.
Listen.      To.        Me.
Something’s wrong.

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Sorry I Haven’t Been Able to Write Lately

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Identifying "Resources" that can help you figure out what you need and where to find it can take hours of work. Something caregivers don't have time to spare.

I guess most of you who have read my column in the past think I’ve stopped writing.  I have to admit that I’ve considered whether I should do that because my time to do anything at all these days is so limited but the publishers of this site are so kind and they have asked me to share my stories whenever I get the opportunity so I’ll keep doing so for as long as I can.

 Continue reading at

 https://multiplesclerosis.net/caregiver/caregiver-perspective-sorry-havent-been-able-wright-lately/

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What Goes In Must Come Out

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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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Did You Miss Me?

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The Emergency Department relies on information and training to support development of healthcare professionals.

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 in that they have the 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 medicines 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.

Continue reading at

 https://multiplesclerosis.net/caregiver/did-you-miss-me/

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Something New to Deal With

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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 the natural order of MS; lots of fatigue leading to the need for more sleep? Should he sleep this much if he’s tired or does sleeping a lot cause him to feel tired? Could be either. Should I be concerned or just let it go as part of the normal course of MS?

Continue reading at https://multiplesclerosis.net/caregiver/something-new-to-deal-with/

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I’m No Angel

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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 far from being an angel.

continue reading at

https://multiplesclerosis.net/caregiver/im-no-angel/

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Feeling Alone or Maybe Just Left Out

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Depression is a common mood disorder in the elderly.

I always have guilt 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 fantasy helps to get past the moment.

Feeling lonely is like that. I’m actually rarely alone which is one of the reasons why I feel lonely. I am responsible for Lynn 24/7/365; just like a parent of a small child. Whereas children grow up and leave home, adults with disabilities do not unless they become too much for the caregiver to handle (and that’s not something any of us want to have happen). So, you would think to have Lynn with me all the time for companionship, I wouldn’t be lonely but I am at times.

Continue reading at

 https://multiplesclerosis.net/caregiver/caregiver-perspective-feeling-alone-or-maybe-just-left-out/

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Confessions of a Stressed-Out Caregiver

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Social Security provides income to qualified workers over the age of 65 and Medicare provides insurance to eligible elderly and disabled.

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

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Many caregivers find strength, comfort, and support from their faith. Physicians report that patients who have strong belief systems recover from major events quicker and seem to have better success rates than those who have no belief systems.

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 nothing serious but I don’t know what it is and I’m getting tired of it. Anyway, I’m also tired of being so negative. Therefore, my post today is my attempt to take this challenging period in our lives and make it into something positive. Here goes….

I am blessed that I have been in the hospital three separate times for three overnight stays because it has allowed my family and me now to have a trial run on what we would do if I was sick for longer than overnight.

continue reading at

https://multiplesclerosis.net/caregiver/blessings-from-pain/

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Give Me a Hand

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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 because no longer could he insist it was just his sciatic nerve. As I told him, sciatic nerves do NOT affect the shoulder, arm, or hand movement, so it was more likely to be a problem in his brain or upper spinal cord. He agreed, and so came his first MRI and the diagnosis of MS.

Continue reading at https://multiplesclerosis.net/caregiver/give-me-a-hand/

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I Just Keep Going and Going and Going

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The Emergency Department relies on information and training to support development of healthcare professionals.

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 own challenges and illnesses and life to endure. It’s not that I don’t have wonderful people to support me; I do. It’s just that there is so much that must be done to keep our routine going.
Continue reading at https://multiplesclerosis.net/caregiver/i-just-keep-going-and-going-and-going/

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

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The way you become a caregiver has a significant impact on how you adapt to being a caregiver.

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 for my next break after vomiting and while doubled over, collected catheter supplies and inserted it before I was unable to remain upright again. At that point, I was able to focus on me.
Continue reading at: https://multiplesclerosis.net/caregiver/what-resources-are-available-if-im-not-around-anymore/

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Helpful Resources for Supplies, Equipment or Information

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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 by his doctor to managing his MS. His doctor is a neurologist, and he does not offer guidance on his care or alternate treatment measures; just on disease treatment. However, when I would bring something up, he would make referrals to other resources. His physical medicine/rehabilitation doctor has probably been the most helpful. He arranged for Lynn to be measured for a power chair and he’s talked to him more about dealing with his other losses and some measures worth considering in either preventing further decline or improving overall health.

Continue reading at

 https://multiplesclerosis.net/caregiver/helpful-resources/

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Waiting for the Next Shoe to Drop

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Caregivers often experience feelings of depression, being overwhelmed and loneliness.

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 goes like this…
He sure is sleeping a lot. Shouldn’t he have adjusted to the dose by now? It’s been a month. Maybe it’s something more. Just because he has more baclofen on board doesn’t mean that’s what is causing his sleepiness. I think I should check to make sure he does not have a urinary tract infection that is not showing up yet. I wonder if his CO2 level is too high? With his sleep apnea, he might be retaining carbon dioxide which would make him sleepy. I’ll have to make sure he’s oriented when he wakes up. What if it’s something new?And on and on and on….
Continue reading at https://multiplesclerosis.net/caregiver/waiting-for-the-next-shoe-to-drop/

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It’s Snowing

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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. With this storm in particular, it was predicted to hit all of Virginia so pulling from one area to another is not really a possibility. Therefore, I had to plan for whatever might happen knowing we would be on our own for a while out here in rural Virginia.
Continue reading at https://multiplesclerosis.net/caregiver/its-snowing/

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I Can’t Just Get Sick

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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

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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 if we had one in our neighborhood but it is how I enjoy the sights of Christmas being limited in my time away from home.

Continue reading at https://multiplesclerosis.net/caregiver/we-survived-christmas-but-just-barely/

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How Can I Help?

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I get a lot of offers to help; some sincere and others just being polite. What I have found is that people want to help but they don’t know how and realistically, many have their own problems and challenges so they can’t help in a way that involves time or money.  While I really could use the help, I don’t want to put anyone out so I usually don’t ask BUT, if you ask me if you can do something for us, I may very well say, “yes.” Here are some ways you can help.

Inexpensive and limited time commitment:
continue reading at: https://multiplesclerosis.net/caregiver/caregiver-perspective-can-help/

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Rules of Engagement

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No, I’m not talking about the “take no prisoners” rules but instead am referring to rules associated with social engagements. This is the holiday season and there are family gatherings and parties at work or at friend’s home that are cherished events and a great way to keep those social connections. However, participating can be a challenge and a heartbreak for those who are mobility challenged and their caregivers. If you are having an event and want to invite someone who is a caregiver or gets around in a wheelchair or uses other equipment for stability, please consider the following:
Continue reading at

https://multiplesclerosis.net/caregiver/caregiver-perspective-rules-of-engagement/

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Tested By Fire

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I was listening to a Bible commentary today and the commentator was talking about how God takes us through trials in life that prepare us for events yet to come. He described how precious metals are often put into fire for purifying so that the impurities are removed and the remaining metal is stronger and better able to withstand pressure and stress thereafter.  I can see how that has been the case in my life.
People often ask me how I do what I do.  How can I survive on five hours of sleep a night, hold down a very intense full-time position that often requires more than 40 hours a week to complete but yet be there night and day to take care of Lynn without losing my mind? Now, there are days when that last part might not be true; days when I think I am losing my mind, but for the most part, I’ve learned to take each day one minute at a time and just deal with whatever is the greatest need at that particular moment. I realize, I’ve learned to do this by being tested by fire throughout my life.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-tested-by-fire/

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Struggles with Skin Care

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I am obsessed with Lynn’s skin. Many years ago I worked as a home health nurse and I saw some terrible bed sores that started out small and then progressed to craters. Some of the patients had their entire backsides destroyed. Most of the breakdown, I expect, was due to inattention but some was also due to poor nutrition and just the disease process the person had.
With progressive MS, secondary or primary, the person often is in a wheelchair or in bed most of the time. In either situation, the person’s ability to shift their position is very limited or maybe non-existent.
continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-struggles-with-skin-care/

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Stages of Loss: Acceptance

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Overcome by despair over a dropped bag of groceries, feelings of depression can make minor accidents seem major.

The final stage of experiencing loss or grief is acceptance. Some people never get there; some get there quickly. Most of the time people step into and out of acceptance at various times based on what is happening around them or new challenges they face associated with the loss.

For the caregiver, at least my personal experience, is that I moved into the acceptance stage long before my husband did. In fact, I’m not sure that he’s actually there yet. I know he has finally accepted the fact that he has MS but I’m not sure he has accepted the fact that his physical limitations are permanent. And maybe that’s a good thing. He continues to exercise muscles in anticipation that he may one day walk, or sit up independently, or be able to use his writing hand again. If he didn’t have this hope of being able to regain some function or of being able to not feel so miserable all the time, I’m not sure that he would not slump into a severe depression.

Continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-stages-of-loss-acceptance/

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