2019 BLOG POSTS
In 2019, I continued to write blogs about caregiving for MultipleScleosis.Net. The focus of my topics always had to do with caregiving but also incorporated the care of a multiple sclerosis patient to make the articles relevant to their readers. It was during 2019 that I began the process of working on this website and began to share the idea of expanding support for caregivers from working with MS families to all caregiver families.
Did you know that delirium was a symptom of a urinary tract infection? Neither did I, but it’s something I’m learning to recognize. Apparently, I’m not the only one who has experienced its impact because there was an article on the phenomenon in one of my nursing magazines last month. My husband Lynn’s doctor made the connection for me very recently. Delirium during a spell of pneumonia Lynn had delirium for about a month when he had a spell of aspiration pneumonia at one point. I attributed the behaviors he exhibited at that time to pneumonia. I wrote about it related to sundowner’s behaviors. Continue reading at https://multiplesclerosis.net/caregiver/delirium-uti-connection/
Hats Off to Special Needs Parents I want to shout out today to special-needs parents. God bless them; they have their hands full, and their energy tanks empty most of the time. These caregivers play a dual role as both parent and caregiver. In that role, they are often criticized by everyone they encounter—especially if their special needs child has an invisible illness. Of course, if the child is not wearing a brace, sporting a tube, or riding a wheelchair and “acts out,” witnesses to an “event” assume the child is misbehaving and label the parent with poor parenting skills. Instead, the observer is likely witnessing an appropriate response to environmental stimulation based on the child’s diagnosis. The observer is also seeing a parent who is attempting to: (1) help
Since I’ve retired, I’ve found myself on a mission to do something about the plight of caregivers. Why am I so stirred up? It’s because there is a severe lack of training for family caregivers. The lack of training is especially true in rural areas where families are expected to perform medical procedures with little to home health resources. Challenges of home health care in rural counties Did you know that in rural America where I live, many counties have no pediatric home health services at all? In some of those rural areas, even adult services are challenging to find. I now have access to adult services, but ten years ago, I did not. Now, the home health nurses that monitor my husband’s care cover five counties and travel over a hundred
My current project is gathering information to write a book on skincare and wound management. Therefore, wound and skincare are on my mind. One of the most important practices I have is to check my husband’s skin regularly for any signs of skin breakdown. If I see the first hint of any break in the surface, I attack it immediately with repair cream to prevent further damage. I make sure that he stays off that side of his body for a while, allowing for better circulation to that area. When I was doing home health nursing, I saw patients with pressure ulcers covering the entire buttock area. The wounds took years to heal, and the patients were in misery. The cause was often a failure to turn the patient frequently
Today, or maybe yesterday, is the official launch of my website. I launched it by creating a Facebook page to start getting the word out about Becoming A Family Caregiver. I figured what better way to spread the word than through social media, right? I’ve been struggling for weeks now learning the ends and outs of WordPress and Elementor. I’ve had many disastrous starts and frustrating moments in-between times of carrying for my husband when our daytime paid caregiver is off, or he was in the hospital. I’ve also had to divide my time between working on this site, fixing meals, taking care of our home, helping my family, taking care of my health, and all the other chores required within my world view. Sound familiar? In other words,
Caregiving is a very lonely responsibility. If you have ever been a caregiver, you understand what I mean. All caregivers have probably experienced that feeling of being alone when the smoke clears. The initial burst of enthusiastic help is over. Everyone has returned to their normal lives except you. As the dust settles and the smoke clears to the immediate crisis, you stand alone ready to pick up the pieces of whatever broke this time, keeping up a brave front for all to see. Continue reading at https://multiplesclerosis.net/caregiver/no-time-isolation/
I am concerned that the specialization of medicine is leading to a decrease in the quality of care available rather than an increase. I have seen this more and more over the past several months as my husband has had a series of mystifying medical conditions requiring different “specialties” to determine the underlying cause. These specialties do not always play well together. Continue reading at https://multiplesclerosis.net/caregiver/specialization-medicine/
How prepared were you when you first became a caregiver?
Did you Know what todo, where to go, what the medical terms being used even meant?
Did you know how and when to switch between the role of spouse/child/sibling/friend/parent/partner and caregiver?
If you are like most caregivers, you probably didn’t. Most of us didn’t plan on becoming caregivers. We acquired the role because “something” happened to someone we cared about or had the responsibility to protect. We did not apply for the job. It did not matter if we had prior training, had any competency or skill in knowing what to do. In some cases, it didn’t even matter if we wanted to do the job since we were obligated under a court-appointed mandate. We had the responsibility to be the caregiver, training or not, to care for and protect, this person placed under our responsibility. How could someone help but feel overwhelmed and uncertain in that situation?
How many times a day does your MS patient call you for help? If I have slept the night before I tolerate it pretty well. If I haven’t, then I do a lot of mumbling when I get the “call.” I admit I get frustrated a lot. I have to remind him often that I’m at work and need to get back to my desk. The interruptions cause me to regularly work till after 9 pm trying to get in a full day. I’m very fortunate that I have that flexibility. I’m sure many of you do not. My heart goes out to you because it’s a terrible conflict to have to decide which need to serve–caring for your spouse or bringing in the money to care for you both. The reality is you have to work to eat, but it’s hard to manage it all.
First off let me say that I would not wish MS on anyone. Nor do I believe that God gives people MS either as a blessing or a curse; MS, like all diseases, is a consequence of a fallen world and Adam and Eve’s free choice to disobey God. That said, I believe God can use the hard times in our lives to strengthen and bless us.
I must admit that I don’t particularly appreciate it when someone tells me that “God doesn’t give us anything we can’t handle.” Most of the time, I want to respond that His idea of what I can handle and mine are world’s apart, but I have to admit that for the most part, that saying is true. Or maybe it’s not. What I have found is that God doesn’t expect me to handle it alone.
My husband, Lynn, began taking Ocrevus, to treat his Primary Progress Multiple Sclerosis (PPMS) in March. As his caregiver, one of my responsibilities is to become familiar with his medications and associated risks. While Ocrevus holds great promise for individuals who have PPMS, the impact of having continuous autoimmunity as a consideration in living his life is significant as well. Continue reading at https://multiplesclerosis.net/caregiver/immunosuppression-ocrevus/
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/
Thank you to Sophia Nuamah for submitting the following guest post for the MS week. I appreciate her support for multiple sclerosis research and the family of caregivers around the world. Ms. Sophia Nuamah MyTherapy Landwehrstr. 60/62 80336 Munich, Germany www.mytherapyapp.com/ Chronic diseases such as MS are usually termed as Invisible illness because so many people sometimes, don’t even believe you’re sick because the symptoms are not seen. People diagnosed with MS can sometimes develop complications like Mental changes, Depression, Epilepsy, MS tremors, problems with speech and swallowing, Paralysis (typically in the legs), etc. Some even experience relapses as they experience new or worse symptoms; and may experience some degree of reduced mobility at some point in time, and this can make everyday tasks difficult or even impossible without help.
Communication is a tricky process. When I make a statement, not only am I projecting what I think I intend to say, but I am also creating in my mind an image of how I think you will receive my message. I tell myself a story about our conversation before we ever have it. That means that by the time the interaction occurs, I already “know” the outcome of the conversation in my gut before I speak the first word. I may be so focused on what I “know” you’re going to do based on the script I’ve written in my mind, that if you deviate from your “lines,” I’m likely to miss what you say in real time. Continue reading at: https://multiplesclerosis.net/caregiver/asking-help/
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/
It seems ironic, but did you know that caring too much could actually harm you? There’s a fancy name for it called “compassion fatigue.” While compassion fatigue and burnout seem similar, they have significant differences. Continue reading at https://multiplesclerosis.net/living-with-ms/compassion-fatigue/
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:
Have you noticed how difficult it can be to have a sensitive conversation with another person without being misunderstood? Why is that? Difficult conversations Today our primary mode of communication seems to be through text messaging or tweets. We use short abbreviated bursts of information delivered remotely. 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. 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/
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/
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/
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
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
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/
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/
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