I’ve moved! Find me now at https://becomingafamilycaregiver.com
I’ve expanded my topic area to include all caregivers, not specifically multiple sclerosis related families. In addition, I focus the content on providing information on how to adjust to caregiving, resources, and how to perform medical procedure correctly including how to recognize when something is wrong.
I hope you will continue to follow me at my new location.
Donna
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.
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/
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.
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 miles between patients.
Continue reading at https://multiplesclerosis.net/caregiver/training-needed/
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/
Throughout Lynn’s journey with MS, we have been fortunate that he has rarely had to deal with any form of mental health impairment. Having primary progressive MS, long ago, he lost his ability to move productively any of his limbs and needs assistance with bowel and bladder functions. However, his mind has always functioned well. He is excellent at Trivial Pursuit games, writes very complex science fiction/fantasy novels for a living, and has more random knowledge about almost any topic related to cooking and building than you could imagine. His MRI shows practically no impact from MS in the memory centers of the brain. All his brain networks are sparking along just great, that is, they were until suddenly in April, they weren’t anymore.
Continue reading at https://multiplesclerosis.net/caregiver/mental-health-caregiving/
This is also being posted on my new website https://sharingwithcaregivers.com
I’m excited to announce that I am merging this website with a new website under construction called “Sharing with Caregivers.” Today I moved all the blogs I have written from this site to the new site in case you are looking for them. The new site’s address is https://sharingwithcaregivers.com
Where this site focuses on multiple sclerosis caregivers, the new site is for all caregivers. I have some information already available for public viewing. Take a look and let me know what you think.
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/
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.
Caregivers are noteworthy because of the critical role they play in the lives of people diagnosed with MS because there comes a point in time when they need extra help in performing normal daily activities.
Caring for someone with MS is physically and emotionally challenging. When you’re giving care and support to someone else, it is mostly very easy to disregard your own wellbeing. But it’s really important to look after yourself, mostly because staying healthy means you’ll be able to continue giving care.
Some of the ways to help maintain your physical and mental wellbeing are to take a break when needed to look after your health, renew your energy to be able to keep on with your caregiving and get help/support from others, to make sure you’re not doing everything by yourself.
For people living with MS who care for themselves, it is very important to get a support system and build social relationships to help you through the challenging stages of the disease.
Talk to people- this could be a friend, family member, a professional, or someone else who is also diagnosed with the disease or has experience in giving care; as MS can have a big impact on the people close to someone who’s living with the condition (family/friends), especially if they start to rely more and more on support from them every day.
Both people affected by MS and caregivers find that it helps to talk about their feelings and experiences of caring for themselves or other people.
Nevertheless, there have also been some technological advances in helping people diagnosed with MS manage their condition better to live normal productive lives like medication reminders to efficiently follow their treatment plans and smart devices- installed in homes to counter the problem of reduced mobility.
All these are signs of progress and hope for those living with MS, who have suffered in silence for so long; and though there’s a long way to go when it comes to invisible illness like these, Increased public awareness and more useful tools like this are making life easier for the people with them.
This infographic was created by the MyTherapy team, free app for Android and iOS.
Rising Tide, my husband, Lynn's, first published novel
MS Caregiver Sharing 