multiple sclerosis

New Mysteries All the Time

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The mysteries of MS always keep it interesting as I struggle to manage my husband’s medical care and assist him in maintaining an optimum quality of life with Primary Progressive MS (PPMS). Another challenge came my way last week that stumped even his medical team after a hospital admission ruled out all sorts of possible causes. The mystery centered around his taking Ocrevus and developing confusion.
Continue reading at: https://multiplesclerosis.net/caregiver/ocrevus-immune-system-complications/

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End of Life Decisions

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Emotional responses in emergencies range from calm acceptance to rage.

I try to stay optimistic about the future, but occasionally an event occurs that reminds me of how tenuous life can be. One of those events happened recently with the passing of a fellow caregiver’s spouse.

Similar health histories

About eight years ago, I meet the caregiver while my husband, Lynn, was a patient in Intensive Care (ICU). Her husband and Lynn shared similar histories (both had Primary Progressive MS – PPMS), though her husband was much younger. During the month, Lynn was a patient in the ICU, the caregiver and I had many conversations about the challenges of being a spouse/caregiver. It felt so good to be able to talk openly to someone else about how I felt about my new role, especially about my fears related to Lynn being in ICU. Those discussions lead me to start writing a blog about the struggles of being a caregiver with the hope of connecting with other caregivers in similar situations.
Continue reading at:  https://multiplesclerosis.net/caregiver/end-life-planning/

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Prepare to Become a Caregiver

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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.

Prepare to become a caregiver. In 2015, research conducted by the American Association of Retired Persons (AARP) found that 43.5 million adults in the United States (approximately 29% of the adult population) had provided unpaid care to either a child or adult during that year. With the growing need for in-home medical interventions and the limited resources available, experts predict that the vast majority of adults will at some point during their adult lives need to perform the role of caregiver to someone they know.
Continue Reading at https://multiplesclerosis.net/caregiver/tips-prepare/

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Remember Whose Life You Are Living

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As a caregiver, I want to help make my spouse’s life better. I want to help him find answers to his medical questions, assist him in doing the things he cannot do, and help him in whatever way I can. As his MS has progressed over the years, his need for my assistance has expanded to the point that he is now entirely dependent on me for everything.

MS improved our marriage

When we first were married in 1997, Lynn and I had difficulty bonding because we were both very independent. Our marriage struggled because we did not “need” each other.  Having each been married previously, we were capable of managing homes and children without partners; therefore, adding one to the mix required significant adjustment on everyone’s part.
Continue Reading at: https://multiplesclerosis.net/caregiver/choice-control/

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Help with Difficult Conversations

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Have you noticed how difficult it can be to have a sensitive conversation with another person without being misunderstood? Why is that?

Difficult conversations

  1. Today our primary mode of communication seems to be through text messaging or tweets. We use short abbreviated bursts of information delivered remotely.
  2. Texts and tweets allow us to keep our distance from each other. When we text, we send the message to an unseen recipient who experiences an emotional reaction we don’t have to acknowledge.
  3. Individuals fear to share how they feel about issues due to concerns about being ridiculed, rejected or embroiled in conflict. In today’s society, we do not know how to cope with these emotions; therefore, the fear of them leads us to avoid them if at all possible.

Continue reading at https://multiplesclerosis.net/caregiver/help-difficult-conversations/

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Understanding How FMLA Can Help

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Caregivers today include all genders, ages, races, and socioeconomic groups. Each of us will one day either be a caregiver or need a caregiver.

Unreliable attendance

Living with MS means a lifetime of unpredictability. You may feel perfectly fine when you go to bed, but sometime during the night, a significant front moves through the neighborhood wreaking havoc on your body. Suddenly, getting out of bed to go into work would require the assistance of a powerhouse Olympic team, only they didn’t happen show up at your door to lend a hand this morning. Therefore, not only can you not go into the office, but neither can your caregiver who has to stand-in for the Olympic team and help out.
Continue Reading at: https://multiplesclerosis.net/living-with-ms/how-fmla-can-help/

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Right to Decide

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I often feel like I have multiple personalities, and knowing which one I should be using can be difficult. Sometimes I know who I want to be, but it’s not always the one I think I should be. There are even times I know who I am and who I should be, but I don’t want to be either of them.

I act as my husband’s medical decision maker

Many times, I’m expected to act “in the place of” my husband. I’m his medical decision maker and his power of attorney.

Continue reading at https://multiplesclerosis.net/caregiver/decision-making-rights/

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Unexpected Sadness

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I got hit by feelings of sadness unexpectedly today. Keeping my self out of my husband’s sight at all times, I had to work really hard to hide the fact I was very close to crying. Usually, I guard my emotions well, and rarely break down. However, I have one weakness that I can’t seem to guard against: music.

Fell in love with his singing

Lynn had the most beautiful tenor voice you would ever want to hear before his MS progressed this far. It was his singing that sealed the deal for me in deciding to take the chance on marrying him and bringing our two families together. I had been burned badly in my first marriage and was very hesitant to remarry. Lynn was just as reluctant as I was as far as setting a date, but he was very romantic. Me on the other hand – I wouldn’t let my guard down in order to give him my heart either.
Continue reading at: https://multiplesclerosis.net/caregiver/unexpected-sadness/

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Hope or Regret: The 4-Wheel Drive Powerchair Debate

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Powerchair

I know you’ve heard the phrase, “One person’s junk is another one’s treasure.” I have a new one for you: “One person’s hope is another one’s regret.”

Four-wheel drive powerchair

We have a $12,000 monstrosity my husband calls his four-wheel drive powerchair. We bought this large paperweight in 2009 but never used it because it came programmed incorrectly. Advertised as able to climb stairs, speed through sand, and out-maneuver muddy driveways without a hitch, the Predator is a basic, metal framed chair with no padding or seat, equipped with headlights, turn signals, a horn, and the ability to raise or lower its height. It’s very ugly. However, at the time, similar models were not available for the stated price in America, and Lynn desperately wanted a way to be able to go fishing.
Continue reading at: https://multiplesclerosis.net/caregiver/hope-regret-powerchair/

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Impact of Caregiving on Employment

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In many families, both the person who has MS and the caregiver work in jobs outside the home. The impact of MS on the employer, therefore, is not only directly related to the individual with the medical condition but also the person or persons providing support to that individual. However, according to a recent study by Harvard Business School, most employers seem unaware that caregiving significantly impacts their bottom lines.1 Maybe they should pay closer attention.
According to the report, approximately 75% of the workforce they surveyed had caregiving responsibilities. These responsibilities influenced their ability to be productive at work. According to the study, a third (33%) of those surveyed stopped work to care for an ill parent. Another forth (25%) provided care to a spouse.1
Continue reading at: https://multiplesclerosis.net/caregiver/impact-employment/

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Reflections on Caregiving

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As mobility becomes difficult, ramps help caregivers get family members in and out of the house.

New Year’s Day often brings a time of reflection, and for some, a time for establishing resolutions for change. My life tends not to be stable enough to attempt to create resolutions for change. However, I have been indulging in reflection quite a bit.
I’ve been thinking back over how my role as a caregiver has changed over the years and the impact that it had on my marital relationship and my health. When Lynn and I first married, I knew his father had died of MS complications, but Lynn claimed to have no symptoms himself of the disease. We know now that he had several early signs of MS that he and his doctor failed to recognize.
Continue reading at https://multiplesclerosis.net/caregiver/reflections/

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Avoiding Typhoid Mary

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Have you heard of Typhoid Mary?

Mary Mallon or Mary Brown (she used both names) worked as a cook and harbored the typhoid bacteria in her gallbladder. Wherever she worked, the families in those households became sick, and many died, but Mary herself never became ill.
Authorities believed that Mary infected over 50 people with typhoid, several of whom died. They met with her and explained that she probably carried the germ in her gallbladder. When asked to stop working as a cook voluntarily, Mary refused because she did not believe in the germ theory. She asked, “How can I be a carrier if I have never been sick?”
Continue reading at: https://multiplesclerosis.net/caregiver/immunocompromised-protection/
to find out more about why I have to avoid people who might be sick to protect Lynn from getting sick.

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Retirement to the Rescue

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I have always had a tough time saying no to anyone. Saying no fills me with guilt. I like to solve problems and make others feel better. I, therefore, tend to suffer from a lot of blame if I can’t solve the issues presented for a resolution quickly or at all. I feel like a failure creating feelings of depression and anger.

On the other hand, pushing to answer complex problems can result in positive consequences, too. To avoid feelings of guilt, I struggle to try harder to succeed in reaching my goal of meeting the person’s needs, and it helps me to be more creative. However, often along with the added energy and motivation comes additional stress and anxiety.

Continue reading at https://multiplesclerosis.net/caregiver/retirement/

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Holiday Preparations

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Getting ready for the holidays at my house incorporates specific considerations that many families who do not deal with chronic illnesses do not consider as part of their preplanning task list. Since most of you readers have similar concerns, you probably know where I’m going with this but for new caregivers just starting to deal with the holiday season, here are some of the staging considerations that I do in advance to help the gathering go as well as possible.

Continue Reading at https://multiplesclerosis.net/caregiver/holiday-preparations/

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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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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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Realities of Life

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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 by preparing meals, etc., for the next day, bath time, nighttime rituals, etc. Including my own personal care and feeding, it takes about five hours to get it all done and get us to bed. Again, the work is not complex care; just physical and time-consuming. None of this is complicated but all of it is necessary to maintain quality of life that is not miserable every minute of every day till you die so it’s very important stuff. It is also stuff that if you cannot do on your own, is very, very expensive to have someone else do for you unless you are fortunate enough to have family or friends to help you out.

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 https://multiplesclerosis.net/caregiver/realities-of-life/

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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

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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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Lack of Sleep. The Root of All Evil?

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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 remember those days fondly. I felt good. I had energy. I felt rested and refreshed when I awoke each morning ready to take on the day.

I miss those days.

Continue reading at

 https://multiplesclerosis.net/caregiver/caregiver-perspective-lack-of-sleep-the-root-of-all-evil/

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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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