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.

Training Needed for Caregivers

Caregivers learn to do health assessments.

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 miles between patients.

Continue reading at https://multiplesclerosis.net/caregiver/training-needed/

No Time to Care

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/

Mental Health Caregiving

Mental Health Caregiving

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/

Specialization of Medicine – Is that a Good Thing?

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/

Hey Sweetie! Can you Come Here a Second?

Posted on July 26, 2011 by mscaregiverdonna

I yell back, “Just a minute.  Let me finish this sentence.”  Then I try to recollect my thoughts and finish up whatever thought I was in the middle of (I work at my job from home using an internet connection) and see what he needs.  Often it’s something simple like “scratch my leg” or “hand me the remote.”  Other times it’s more time-consuming, “I need to go to bed.” or “It’s time to cath me.”  Most of the time, the one thing turns into two or three and it’ 5 minutes or longer (often longer) before I get back to that sentence.  Seven out of ten times, before I get settled, I’m called back for something he forgot.

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. 

How do you afford it? You can’t afford to work, but I expect you have to pay someone to stay with your patient. That can’t be cheap.  I know one day I’ll have to go back to my office at work and be there instead of here. I dread that day because I know he will have a difficult time adjusting to being taken somewhere to stay all day (if there is such a place that provides that level of daycare) or having someone unknown come here to visit. I find myself thinking about that at times and have to turn it off and say a prayer of thanksgiving that I’m still working from home.

Being here, though, is both a blessing and a curse.  Sometimes I think if I hear, “Hey Sweetie” one more time I’m burst out crying in frustration.  I’ve done that a couple of times.  He understands that sometimes it’s just too much and I need to get away to go to the store but even when I do that, and I can’t hear, “Hey Sweetie,” I often get a call on my cell to ask when I’m coming back because he needs….

So to all, you caregivers out there who are on 24/7, here’s to you and your Sweetie.  Hang in there.  Take a deep breath, try to remember to think about how it must be to need so much attention and go back in one more time.

 

Fear of the Future

Originally posted at MSCaregiverDonna July 24 2011

Ever since Lynn almost had to go on a ventilator in May, in the back of my mind I wonder what to expect about the future.  I seriously try to just look at what today holds for me but whenever plans need to be made, I can’t help but worry.  I can’t share this with Lynn.  If I do he thinks I’m being pessimistic and that I don’t think things will turn out well. It makes him depressed because he thinks I think he’s not going to get any better… so I can’t talk to him about my fears…but they are there.

We’re going on vacation.  I so want him to have fun and enjoy it but I’m afraid he won’t. I’m afraid he will feel bad and not be able to go fishing and not want to participate and be absolutely miserable. He will try not to put a damper on it for anyone but I’ll know and I’ll stay close by and I’ll just want to be home rather than there. That’s my fear for vacation.

We’re looking at building a new home.  I want to be excited and make plans but my fears are there in the back of my mind.  Will I be able to continue to work full-time so that I can pay the bills. The house we live in now needs so many repairs to be able to be put on the market.  How can I pay for that and a new house too?  Right now I’m working from home full-time.  What if my job needs me to be on site and I can’t work from home anymore?  Who will take care of Lynn?  He cannot be alone for more than an hour by himself.  His son is starting a new full-time job. Both my kids work full-time.  He’s a big guy and needs a lot of help so not just anyone can stay with him.  So what would that mean?  A full-time licensed caregiver while I’m at work?  Insurance isn’t going to cover all that.  I won’t be able to afford a caregiver and paying to get a house built.  See where my mind goes?

Sometimes it gets very overwhelming when I think of all the responsibility and how dependent he has become on me. I miss having the freedom to sleep a full night without having to get up to catheterize him or put him on his peddler because his leg is spasming.  I miss being able to go to a store and shop.  I have four gift certificates for a massage but I can’t be gone for the two-three hours I would have to be away to be able to use the certificates (and my muscle spasms in my back from lifting him by myself are constantly painful so I could really use the massage).

So what do I do when my mind starts going in those directions? I tell God it’s His.  I can’t handle it and I’ll just have to trust He will take care of it when the time comes.  Otherwise I would just go mad.  But that works and I keep being able to cope and keep having hope.  Thank goodness for faith in the fact that He will help me when the time comes. He always has.

Could MS Be a Blessing?

Posted on mscaregiverdonna on July 17, 2011 

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. 

I’m someone who wants to be in total control of my life.  I don’t like the unexpected.  I plan everything.  I do not leave things to the last minute just in case something might come up.  I like to know what’s happening and I want to have closure.  One of the hardest things for me to learn as my caregiving requirements have increased is how to handle not being in control.  I’ve had to learn to trust God.  I’ve had to learn that I cannot do everything myself.  I have to acknowledge that I am not superwoman, and I need help.  It’s through all that I’ve had to learn that I have realized my greatest blessings.

When Lynn and I got married, we both loved the churches we belonged to before marriage, so we decided rather than either of us give up our church home, we would find another one.  We looked around but felt the most at home at Gethsemane Church of Christ in Mechanicsville.  We both liked to sing, and I wanted to act.  Lynn was a very talented tenor, and I was a passable alto, so we joined the choir.  Through that, we became part of the cast annually for a Christmas dinner theater. We also joined the handbell choir, and Lynn became the drummer for the church praise band.  I helped with the start-up of a support group called Discover Freedom (the group was initially started to support people with addictions but was soon found to help people with all types of needs).  I also helped create a drama team and helped both write and present many of the scripts. We were at church 4 out of seven days and loved it.  We made so many friends and received so many blessings from participation. 

Then Lynn started getting weaker.  First, he had to drop out of the choir.  His fatigue was too much to allow him to sing or to stand and perform.  Then he had trouble holding the drum sticks plus his legs got too stiff to drive safely, so he had to drop out of both the worship band and bells.  I continued participating for a while until one day he fell while I was not at home and had to lie on the floor for three hours before I could get back to help him up.  The trauma of that experience and the fact he became very overheated and dehydrated lying next to the heat register caused him to become very weak.  I ended up having to work more from home.  He had to stop going to church and eventually so did I so I could stay home to help him.  We missed the fellowship from church and the opportunity to worship with our church family.  

When we stopped going, it would have been easy for the church to forget us, but they didn’t. We get cards and phone calls all the time.  The entire choir came last Christmas to sing Christmas carols.  The church collected money, and one of the members built a beautiful wheelchair ramp for us.  Between Thanksgiving and Christmas, Lynn was continuously in the hospital.  A group came over to our house and decorated both inside and out so we would come home to Christmas cheer.  While at our house they saw our refrigerator was almost worn out and they brought in a second-hand one that was in much better condition than ours. A few months later, they collected money to put in a handicap shower, and two of the members installed it.  Another group came by in the spring and helped remove several broken down things in our yard. One of the members is cooking our meals, and several are donating money to her to do so.  Someone else is baking us bread every week, and another one is helping Lynn with reviewing the books he is writing.  The blessings of this group are overwhelming!  We are so taken care of and so loved that even though we are not able to do as much as we used to, all we have to do is mention something to someone and the next thing we know, it’s done.

Then there is also the blessings of my job.  My supervisor is a wonderful caring woman who has supported my need to work from home.  She has approved me to have computer equipment set up so that I can work whatever hours I can so I can care for Lynn and still meet the demands of my job.  My team is fantastic as well–doing whatever I need to help me get information and keep up with things at work. My coworkers often offer their support and encouragement, and they’ve been known to send me extra help like getting carpets shampooed and delivering meals.

Our children are always doing things for us and helping us out. Our parents and siblings do the same.  So as you can see, we have had a blessing upon blessing.  Though God hasn’t chosen to remove Lynn’s MS, He has given us so much instead, and when I can’t do things myself, He sends someone along to help me/us out.   

I hope you have a church home.  If not, I encourage you to find a church like ours–one that lives their faith and puts into practice what Jesus taught to love your neighbors as yourself.  God’s blessing can be more than you ever imagined.

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Understanding Immunosuppression

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/

New Mysteries All the Time

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/

MY INVISIBLE MS: SUPPORT FOR CAREGIVERS

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. world_ms_day_2019-us
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.

Asking for 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/

End of Life Decisions

Grief and dispair over loss
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/

Prepare to Become a Caregiver

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/

Remember Whose Life You Are Living

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/

Help with Difficult Conversations

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/

Understanding How FMLA Can Help

Caregiving is not just a woman's job. Many men are caregivers for their parents.

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/

Right to Decide

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/

Unexpected Sadness

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/

Hope or Regret: The 4-Wheel Drive Powerchair Debate

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/

Impact of Caregiving on Employment

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/

Reflections on Caregiving

Access ramp
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/

Avoiding Typhoid Mary

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.

Retirement to the Rescue

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/

Holiday Preparations

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/