For several months, we’ve seen groups proclaiming their rights for equal treatment under the law and by others. While I strongly disagree with the violence displayed in asserting those rights, I agree with the message. I believe all persons have a right from conception to be treated with respect and dignity. God created everyone to be equal, and he loves us all unconditionally. Unfortunately, I don’t believe everyone in the world shares my point of view. Due to that fact, laws exist to protect those groups who suffer from acts of discrimination due to age, religion, race/color, nationality, gender, sexual preference or identity, disability, or military status. Some states have more; some have fewer groups protected. However, I believe that caregiver discrimination is an issue that deserves to be recognized. How do you feel about it? Do caregivers need to be a protected class against discrimination? Here’s why I believe they do.
In the “2020 Report, Caregiving in the U.S.” conducted by AARP Family Caregiving and the National Alliance for Caregiving, 48 million adults provided care to family members over seventeen in the United States. That number was up sixteen percent from 2015.
- Twenty-four percent (24%) of them provide care to two or more family members.
- Eighty-nine percent (89%) of the caregivers are relatives.
- In the age group 75+, seventy-four percent (74%) of the caregivers are also 75+.
- Eighty-one percent (81%) of caregivers ages 18-50 provide care to persons over 50.
- Sixty-three percent (63%) need care due to long-term physical health needs.
- Twenty-seven percent (27%) have mental health needs requiring oversite by a caregiver.
- Thirty-two percent (32%) have memory disorders such as Alzheimer’s or dementia as the reason for a caregiver.
What does this mean?
As a nation, more Americans are becoming caregivers for their family members every day due to an increase in the number of them who have long-term physical health, mental health, or memory problems. The following observations could explain the reason why so many caregivers may be staying home to provide care. Despite these numbers climbing every five years, another part of the survey showed that the caregivers could not receive the resources they needed to care for their family members.
This data indicates that the family caregiver could not afford or could not access the care needed for their family member. Is that due to a broken health care system, or do lawmakers feel that these individuals’ needs do not warrant the resources necessary to fix the access problems? Could caregiver discrimination have something to do with the fact that caregivers are often women and the elderly? Does that have anything to do with the fact that there is no urgency to fixing this problem to get them the assistance they need?
- Only 48% (down from 53%) showed hospitalization in the past 12 months.
- Only 31% received indicated they had paid help.
- 26% reported more difficulty in coordinating care across various providers.
- 27% reported more difficulty obtaining affordable services.
- 21% of caregivers say they feel alone due to physical, emotional, and financial strain.
- 41% (down from 48% report their health status as “very good or excellent.”)
- 21% (up from 17%) say their health is “fair.”
- 23% report difficulty seeing to their own health needs.
Why Do I Think Caregivers May Be Victims of Discrimination?
Discrimination has to do with making decisions or treating someone differently based solely on specific characteristics (ex., because you are a girl, you cannot be hired as a cowboy).
Lack of Respect by Healthcare Professionals
While they are front-line caregivers, they are not afforded the same respect and recognition as other healthcare providers. For example, when a caregiver brings their family member into the hospital, doctors and nurses often ignore what they say about their symptoms and observations if the information doesn’t match what they expect to see, especially if they do not use the correct medical terms. Caregivers do not have training in medical terminology. Therefore, healthcare providers fail to give them the respect they are due when they attempt to share information about their family member’s health status. Caregivers wait in separate areas during a patient’s initial assessment in the emergency room or hospital admission. They are not included in team meetings to discuss medical care planning for the patient or long-term patient goals, nor are they included in discharge planning needs. Though no one has more knowledge about what the patient needs to survive once they go home, healthcare teams often fail to invite caregivers to team meetings to discuss discharge or care plans for patients because they assume the family has nothing significant to add. Could caregiver discrimination in these situations be influenced by socioeconomic, ethnic, or gender considerations?
Family Medical Leave Act Retaliation
Congress passed the Family Medical Leave Act to protect family members who needed to take time off work intermittently or continuously to deal with their illness or their immediate family’s. They could miss up to 480 hours per 365 days. However, here’s the catch. It’s unpaid. Though employers are not supposed to retaliate against workers, the resentment non-verbally (and sometimes verbally) expressed to workers using this benefit creates a hostile workplace for those who must use it. Frequent users of the protection have their work performance and behavior monitored closer than other employees. The incidence of terminations for workplace infractions of those who also use FMLA would probably show a close correlation. Therefore, while the law has good intentions, it also comes around to bite them in the end if they use it. In my opinion, this is a clear example of how caregiver discrimination comes into play.
Employers won’t hire individuals known to be caregivers. While employers cannot ask questions related to caregiving on applications, during the interview process, when reviewing hours of work, availability discussions often reveal (if the applicant is honest) the potential for lateness or occasional absenteeism. What is not understood by employers is that caregivers need health insurance and a reliable source of income desperately. If they find a loyal and understanding employer, the likely relationship that develops is one of commitment and excellence. (1) The caregiver doesn’t want to lose the job – they need the money and insurance. (2) They appreciate beyond words someone who understands their needs. (3) They know how rare it is to find a place that understands their situation, and they aren’t about to do anything that will mess that up on purpose.
Being a Married Caregiver is Penalized by Medicaid
Spouse caregivers are not eligible to receive financial assistance from Medicaid to hire help in Virginia. However, if a relative other than a spouse (i.e., son, daughter, mother, etc.) lives apart from the one needing care, he can be eligible to receive Medicaid payments for providing caregiver services.
There are other situations where I feel caregivers are treated differently or prohibited certain privileges or access due to providing care, but I’ll save those for another day. Feel free to add comments.
I’ve started a website to try to help caregivers with issues they encounter. “Becoming a Family Caregiver” provides information for new and experienced caregivers about how to perform care at home, tips on what to do in difficult situations, where to go to get help, and much more. I hope you will give it a look. https://becomingafamilycaregiver.com
Baptizing Someone Immobile
What’s the Process to Baptism Someone Immobile at Home?
Last year, my husband asked me to help him arrange a baptism ceremony at our home. Though baptized as a child, he wanted to supplement his childhood understanding with a reaffirmation of adult faith. Lynn has Primary Progressive Multiple Sclerosis (PPMS). As his condition progressed rapidly in 2006 from the ability to walk to relying on a wheelchair, the reliance on his faith grew. While adjusting to his diagnosis, his relationship with Christ and God provided a daily dose of strength and peace to his soul. He wanted to acknowledge that change to those who knew him by asking them to witness his rebaptism. He asked for my help, and of course, I agreed. Then reality hit— what is the process for baptizing someone immobile at home?
2019 Baptism Plans Cancelled
While I knew the task would be challenging, I also knew that nothing was too big for God, and He would provide us with the answers. Initially, we planned to put something together for 2019. We scheduled a gathering, had food prepared, set up tables, had everything ready to go when Lynn fell ill. Though his illness was short-term, the timing of his recovery took us into the cooler weeks of fall. In considering a date in later October, I had several concerns. As with many MS patients, his body does not self-regulate to temperate changes. With his recent illness, I felt that the outside temperature was too low for him to be wet for an extended period. I had to consider the risk of his body temperature dropping so low that I would not be able to raise it quickly enough to prevent a trip to the hospital.
First Plan Considered – Board on Foundation
Though disappointed we had to cancel last year, I felt relief in many ways. I needed the additional time to consider other options for baptizing. I was not satisfied with the plan we decided to use for immersion. The only idea I had last year involved using a combination of a shower bench and chair of the same height as a foundation for holding Lynn’s body weight while in the pool. On top of the foundation, I planned to place a slider board. I would transfer him from his wheelchair to the slider board, where he would lie until the baptism. The slider board had handles that several of us could use to lift the board plus Lynn off the foundation. Once the paster gave the word, we could lower Lynn into the pool for immersion to complete the baptism.
Safety Concerns with First Plan
However, I was concerned about the safety of this process.
(1) Too many people in a small area in water increases the risk of someone falling. If one person falls, then all may go down like a stack of dominos. If everyone falls, the group will drop Lynn, and he will roll off the board, into the water, and submerge. Since he could not help himself, he might drown before anyone could help him get his head above water.
(2) We might drop him into the pool and not be able to get him out soon enough to prevent a significant decrease in body temperature. If we dropped only him (i.e., we didn’t fall), one of us would be able to keep his head above water. Therefore, the risk of drowning is not present. However, MS patients don’t self-regulate body temperature. Their internal temperature takes on the temperature of their surroundings. If we left Lynn in a cold pool too long, he might become hypothermic, causing his heartbeat to be irregular. An irregular heartbeat can lead to heart damage.
Both reasons needed consideration, although neither was likely to occur. As a caregiver, Lynn’s safety is my responsibility. I must make sure that whatever I plan or allow provides for his safety, and I take that responsibility seriously. Since it was mid-October when we canceled last year, we had plenty of time to think about an alternative.
Then, the Coronavirus hit. Everything changed for everybody. No longer could we invite guests to the baptism. We were not even sure that we could have anyone come over to assist us with having one! Therefore, we didn’t seriously make plans for several months until most of the summer was gone. When churches reopened, we asked our former associate paster who lived nearby to conduct the service for us. He and his wife graciously agreed to help us. My daughter, who is also a nurse, agreed to help. She has a child with a medical condition that does not self-regulate his body’s temperature. Therefore, she is familiar with strategies for dealing with hypothermia. Besides, she knows how to use our patient lift, which will now play a key role in the day’s activities.
Baptism New Risks and Challenges
From Fall 2019 to Fall 2020, the risks and challenges completely changed for having an outdoor baptism.
- No longer would I have lots of people to help lift.
- Anyone who came was a potential carrier for COVID.
- Again, we had waited until the last minute hoping for a different outcome, so our window of opportunity before the temperature became too cold to have the service was small.
- Each person selected to participate was essential. If any of them developed the sniffles or could not participate for any reason, it meant canceling the event again.
Multiple Obstacles Tried to Stop Us
We were determined to move forward with this baptism. Many obstacles continued to get in the way; however, a hurricane with lots of rain, Lynn got sick, a wave of very cold temperatures, and some of our required participants became unavailable. However, we never gave up. Right up to the last few minutes before the baptism, I wasn’t sure it would happen. Minutes before the event, Lynn suddenly felt like he might have to go to the bathroom. An unexpected trip to the bathroom for us can mean as much as an hour or an hour and a half delay. Therefore, we would send people home rather than have them wait.
Right after Lynn started feeling better, a lizard ran into the house. You can’t make this stuff up! We knew we had to find it and get it out before losing track of it. Lynn’s caregiver strongly dislikes reptiles. Therefore, the chase was on to find and get him out. After moving furniture, catching him, and the critter escaping twice, our heroic hunters successfully caught him in their hands. Using cardboard to slide under a cup to create a trap of sorts, his captor carried him in their hands, releasing him at a safe distance from the back door.
Ready Set Baptize
Crisis averted, Lynn was ready, everyone was present, and the time was right for the baptism to begin. With God’s help, we had the perfect solution for baptizing someone completely immobile in a pool on their back deck. Here’s how we did it.
How to Baptize Someone Immobile on Your Back Deck
- Buy a small inflatable pool – The one I bought was 43 inches x 61 inches x 18 inches.
- Purchase 1- ¾ in. a piece of plywood and (2) 8-foot length 2-in x 6 in pieces of pressure-treated lumber with severe weather grading.
- Cut the lumber in half (4-ft sections). Underneath the platform, attach one piece in the center, one on each end, and one just to the outside of the point where the legs of the medical equipment used to transport Lynn will expand.
- Inflate the pool and fill it with warm water. Wrap the pool with a tarp or pool cover to keep the water warm.
- Confirm no COVID exposure with guests and that they will wear masks.
- Assemble towels and wraps for use after immersion and place close to the pool.
- Cover the back of the wheelchair with a raincoat and put a spare cushion in place of the usual wheelchair seat.
- Using a hydrolytic lift assembly, put your family member into the accompanying sling and put them into the wheelchair with the sling in place dressed for immersion.
- Go to the poolside and follow along with the lift. Once at the pool, use the lift to move your family member from the wheelchair to the pool. The lift’s legs will slip under the platform to allow you to position the sling over the pool. Then you can lower your family member to just above the water.
- The minister can perform the service. As he/she starts to baptize, lower the sling slightly to help with the immersion and then immediately start to pump it back up. Lift out of water allowing the water to drain from the sling while you move toward the wheelchair.
- Wrap your family member in blankets to keep warm. Take promptly inside if beginning to lose body heat. A hot shower may be beneficial or using towels from the dryer.
Using this method worked great! With a bit of creativity, the support of a dedicated small group, and a lot of help from God, Lynn’s baptism occurred in safety and without COVID exposure. When God’s people call upon His name for help, anything is possible.
Now That You’re Out of Quarantine, Don’t Forget Thos Left Behind
Quarantine is Over
Daily, the news carries reports of another state entering Phase One of returning to normal following the massive shut-down of the country to protect the vulnerable population from the Coronavirus. At this point, I think most, if not all, states have reopened markets that are not high-risk. People are emerging from their homes to explore the outside world once again. Many are shouting, “Freedom at last, freedom, at last, Thank God Almighty, Quarantine has Passed!” However, not everyone can shout that praise.
Immunocompromised Ill Left Behind
For many caregivers, quarantine is “business as usual.” Whether a President or anyone else sets a date when people are safe to come out of hiding doesn’t matter. Because, in the world of immunocompromised conditions, quarantine is the state of ordinary life. The declaration to stay home and the warning to watch what you do, where you go, and what you touch is unnecessary because those precautions are a way of life to them. The President could have used them over the past two months to teach others how to handle being self-isolated safely. However, even though they are experts, it doesn’t make what they do any more comfortable.
Medical Conditions at High Risk for Social Interaction
Immunocompromised and autoimmune conditions are just two of many illnesses that face potential life-threatening consequences if they encounter individuals with diseases spread through touch, droplet, or airborne transmission. Those with immunocompromised conditions are particularly vulnerable because they have limited or no defense against enemy invasions by bacteria and viruses. A person with an autoimmune disease responds with an immunity defense. However, once they get the cold or flu, their body attacks itself, believing that it has become an enemy. The self-attack makes the individual much sicker and their underlying condition worse. Therefore, they must remain isolated from others continuing with the social distancing experienced by everyone over the past two months.
Knowing your life may be at risk if you visit your friends does not keep you from wanting to see them, nor does it prevent you from developing severe depression up to and including suicidal thoughts. Think of how you felt when you could not visit your friends or hug your grandchildren at Easter. Now imagine facing knowing your life will be that way for the next fifty years. They crave human connection. They want to have relationships with others- to be able to talk heart-to-heart. They want to know someone remembers them and cares enough to check-in once in a while. Their caregivers feel the same way. However, they can’t visit like everyone else visits either.
Shopping on Line
While you are now out of quarantine and able to go shopping again, the caregiver is still shopping online to reduce their risk of exposure. They even have to try on clothes at home and send them back if they don’t look right after arrival. They have to wait for things they need to arrive instead of being able to go out to get them because they can’t leave the house and leave the one under their care alone.
They can’t go to a restaurant to sit down to eat–ever. It’s always take-out. Restaurants are too crowded and germ-friendly for the transmission of airborne disease. So many events and so much fun must remain off-limits due to exposure to high-volumes of potential carriers. Fresh fruit and vegetables, shell food, and some other foods carry bacteria, parasites, and other deadly creatures that are harmless to most people but not to anyone immunosuppressed. Therefore, they can’t share in pot-luck dinners because the food preparation might not always be adequate in every case to keep bacteria away, and they can’t risk the “what if.”
In general, I don’t recommend preparing food for homebound families, usually for the following reasons:
(1) The patient or other family members may have special diet restrictions.
(2) The patient or family members may have taste preferences. Medications often interfere with how things taste.
(3) Family members may have food allergies resulting in allergic reactions.
(4) Food, high in toxic chemicals or known to harbor bacteria or insects, maybe part of the ingredients found in casseroles or other dishes. While they might not be harmful to someone healthy, they are devastating to an immunocompromised patient.
How you Can Help
1. Providing a Meal
If you want to provide a meal, ask which restaurants they like to frequent, get their take out menu, and let them select a meal from there. Then pick it up and deliver it to them. The “delivery” is the most significant benefit of your gift. Gifts, where the caregiver or patient has to go pick up the meal or product themselves, reduce the benefit of the contribution to the point of almost making them unusable due to the difficulty of leaving home.
Being a Sounding Board
Call periodically and to check-in. Ask leading questions to encourage them to talk. They have no one with whom they can share how they feel. By listening, you can help give them a connection to someone who hears their needs and cares. They need to “feel” the “touch” of another person even if through the airwaves.
Visit but with Limits
Don’t visit unless the caregiver invites you to come by, and then, don’t stay long. Don’t be offended by this. They love you and would like to be able to spend time with you, but they only have 24 hours in their day, and they need at least a 30-hour day to get everything done that they need to do. If they get a visitor, they still need to do 30 hours of work because nearly everything a caregiver does is essential and wait until tomorrow in many cases. When taking care of someone’s life, some tasks must complete every day-no exception.
Therefore, these households have strict schedules if they hope to accomplish everything necessary every day, including treatments and medications. They love your company, but to have someone stay very long means they must make up the time lost that day, and it usually gets made up by getting less sleep that night. Therefore, a good rule of thumb is to stay no more than 30-60 minutes at most–thirty minutes is probably best.
Offer to Run Errands
Whenever you’re on your way to the store, call and ask if they need you to pick up anything for them. Picking up a prescription, supplies, or a take-out-meal is one of the best presents; you can give someone stuck at home. It’s like getting a birthday present when someone offers to pick something up at the store, and you know that they don’t mind getting it and bringing it back to you TODAY.
Offer to Do Chores for Them
Offer to do chores for them. I’m sure God must give crowns in heaven to people who help the homebound. We never have time to do anything but essential, and rarely do we have extra money to pay anyone to do them for us. If you want to help someone who is homebound, offer to cut their grass, rake their leaves, take their car to be inspected, clean their house, wash their vehicles, perform repair work, and do whatever they need. If you have a church group or club looking for an outreach, here’s the perfect one. Just look for families who are homebound, they always need help, especially if they just became homebound and don’t have a network of people to call yet.
In conclusion, don’t judge them. You would be surprised how many people talk about those who are homebound to say they could get out and do more if they just would–like they know anything about their lives. Most of these conditions are invisible. You can’t look at the person and see their pain and suffering. They don’t want to look awful when they see you. Therefore, they make themselves look good and try to act healthy. They don’t want you to think they are ugly – would you want someone to think that of you? So they try to look and act their best. In return, rumors say they aren’t that sick. For shame! No one knows what goes on underneath someone else’s skin. Having lived through the experience of two months of quarantine yourself, would you voluntarily isolate yourself from the world if you did not need to do so? Therefore, can’t we trust them when they tell us that their medical condition requires them to remain at home? Would anyone who didn’t have to self-isolate do that if they didn’t have to do so? I don’t think so.
As the full-time caregiver for her disabled spouse, Donna has more than 30 years of experience providing care not only to Lynn but before him, to her daughter now in her thirties. After retiring from full-time employment as a Human Resources professional in 2018, she focuses her attention on helping support the eight members of her immediate and extended family needing caregiving support daily. Between her first career as a registered nurse and her years working in the employment world, Donna developed many skills that make her successful in problem-solving and crisis management. Her greatest desire now is to put those skills to work to help relieve some of the burden caregivers face every day.
A Lifetime of Family Caregiving
Five Family Caregivers Now
As I’ve been preparing this website to “go live,” I’ve thought a lot about my lifetime of family caregiving. In crafting the webpages and preparing the stories and background materials, many memories returned of all the years of caregiving I experienced. In going through the possible representative pictures for this blog, I thought this one most appropriate for the theme, “A Lifetime of Family Caregiving.” Why is it such a good fit? I served as a caregiver in some capacity to four of those family members during my lifetime, and currently, five of them, including myself, function as caregivers today.
Caregiving Life Began in My Thirties
When I became a family caregiver in my early thirties, I had no idea I would spend my lifetime caregiving or even that I was caregiving then. I only knew my daughter needed help, and I would do everything in my power to give her what she needed. The fact that as a caregiver, I “begot” a caregiver doesn’t surprise me at all. She grew up learning the trade.
Like Mother Like Daughter
I’m sorry that her child has special needs, but her skill as a caregiver is far superior to mine. While I was her role model along the way, she learned what I had to offer, and took it to new heights in developing those skills. She’s awesome, and I’m not the only one who says so.
Caregivers Never Get A Break
Being a family caregiver is a tough job. It’s physically exhausting and mentally challenging work that doesn’t stop twenty-four hours a day, seven days a week, fifty-two weeks a year. Caregivers never take a break because even when they are not physically present, mentally, they do not let go of their responsibilities. Relaxation is extremely difficult for a lifetime family caregiver because being “on” and ready to respond in an instant is a part of their innermost being. They do not have an off switch.
Never Mentally Stop Caregiving
Remember the song lyrics, “no mountain high enough, no valley low enough, to take me away from you?” I don’t remember the real name of that song but it could be the caregiver’s theme song. There is nowhere far enough away we can go that our minds will leave the location where we left the one under our care and join us at that distant place. A part of us is always left behind.
Back-up Care Needs are Complex
It is complicated for us to leave home and leave “our person” behind. Many caregivers don’t have someone in their lives to whom they can completely entrust the reins of control to leave in the first place, but even if they do, the preparation to leave takes so much work that it hardly seems worth it to go most of the time. For me to go away overnight takes a week of preparation time—I’m serious—and the two days before, I’m up almost twenty-four hours straight getting ready.
Respite Care Needs to be LONG Enough to Matter
Well-meaning mental health and social work professionals frequently talk about the benefits of respite and how even 15 minutes of respite can make such a healthy difference. I’m sure a 15-minute break is better than no break at all, but I personally don’t get much recharge from 15-minutes. Just saying.
God is in Control
For me, I find most of my recharging comes from time with my family and finding peace with what I’m doing. I know that God’s in control of our situation, and I can count on him to help me through whatever happens. We get through whatever crisis occurs together. When I need strength, I ask God to give me what I need, and he always does.
Family Has My Back
I contact family and friends to gather around me here on Earth for physical comfort, too. My children are great for coming to our aid in a pinch. Of our four children, three of them have caregiving needs which make helping us a challenge at times. The other one works long hours and has physical problems in his life as well. Of our nine grandchildren, seven of them have special care needs due to medical conditions making it difficult for their parents to leave them with just anyone to come to our rescue in the event I need to leave Lynn and getaway.
Alternate Care Solutions Difficult to Find
Finding an alternate caregiver for Lynn is not a simple matter. He has primary progressive MS and is a quadriplegic with full sensation but limited function. He needs assistance with all activities of daily living. I can’t call a neighbor or friend to stay with him for hours without orientation first because feeding him or emptying his urinal requires some training initially for his safety and comfort.
Grandchildren Learning to Be Caregivers
As our grandchildren grow up, each of them is learning to become caregivers. Our oldest grandson who is fourteen regularly helps Lynn with his writing and stays with him when I am only gone a few hours. Living with disabilities is part of their lives and they adapted early to practice accepting differences and helping those who have special needs fit into the healthy world. For example:
The eleven-year-old awakened in the middle of the night to find her sister’s shirt soaked in blood. She didn’t panic. Instead, she helped her sister remove her blood-soaked shirt, apply pressure where the external central line catheter split, and then went to awaken her parents, saying, “Allie is bleeding,” without being the least bit hysterical. For her, it was just her sister needing help. She’s a caregiver at the age of eleven.
Experience = Empathy
My years of caregiving allow me to empathize with most people who become caregivers in any number of situations. Within our family, we have had multiple types of caregiving experiences and circumstances, and through those diverse exposures, I realize that not one style fits all. What makes one situation feel better today may not work tomorrow, and how I help you now may backfire for you next week, but the good news is that there are more ways to try, and there’s hope with each new option.
Concerned for the Future
I admit I struggle with the idea of lifelong family caregiving. It concerns me. I’ve spent a lifetime being a family caregiver, and I look ahead and know that as long as my husband is alive, I’ll need to be a caregiver. However, I’m not sure that I can last that long. My body is giving out, and I’m only 62. My medical issues are worse all the time. I need surgery that I can’t have because lifting would ruin the repair. I’m trying to last long enough to outlive Lynn and keep him out of a facility while I’m alive. If I outlive him, I’ll go into assisted living using the Long-Term Care Insurance I’ve purchased so they won’t need to add me to their list of caregiving duties. I just hope I can last long enough to finish out this mission of caring for Lynn as long as I’m needed. However, this I know, God’s got this…whatever this is.
Children as Caregivers
Since multiple sclerosis often strikes in early adulthood, many times, the family unit includes children who mature into adulthood, watching their parents become progressively weakened by the disease. Such was the case in our family. Lynn had a ten-year-old son who lived with his ex-wife when we married in 1997.
Lynn’s son was a secondary caregiver
Lynn’s diagnosis of multiple sclerosis occurred in 2006, and by 2011, his condition had progressed to the point of requiring the use of a power wheelchair. He and his son are very close, and his son became very vested in helping me with his father’s care. Until he went away to college, he often covered afternoons for me if I had to work late, or came to stay with his father if I had places I needed to go on the weekend. I taught him how to perform all his father’s care in case anything happened to me.
In hindsight, it was a significant burden to place upon one so young even though he willingly requested the assignment. He, like so many other children of persons with disabilities, felt not only love for his father but a duty and responsibility to care for him as his son.
Continue Reading at
“We often forget the child-caregiver when we speak about caregiver roles; however, in some single-parent households, the child is the primary caregiver for the parent. “
I’ve been struggling since December 26 with being both the caregiver and needing care myself. I don’t usually get sick because I’m cautious regarding exposure to contagious situations. For example, I screen those who come to our home both for their symptoms and their possible exposure to others, and I do most of our shopping online. However, on Christmas Day, I acquired a GI bug from out of nowhere.
Catching a crippling GI bug
On the morning of December 26, about half of our guests reported developing the same crippling diarrhea and vomiting illness I enjoyed that lasted 6-8 hours. Though the worst of the symptoms lasted less than twenty-four hours, the recovery took days. None of the guests remember encountering anyone who had been ill or was with someone who had been sick. I concluded from my investigation that one of the guests contacted it from being in a public place and brought it into the group that day unknowingly. Try as I might, I can’t prevent everything.
Continue reading at: https://multiplesclerosis.net/caregiver/sharing-germs/
Once upon a time, the world was a different place in America. Sons and daughters grew up and married and lived in or close to the same neighborhoods where their parents, aunts, uncles, and grandparents lived. Neighbors knew neighbors. Couples got together with friends on Saturday night, and children grew up playing in neighborhoods where best friends stayed that way through college.
Communities used to be connected
People had friends who talked to one another face to face and shared confidences, heartaches, and triumphs. Communities knew one another. Although some of them were related, many were not. They all shared connections through conversations and interactions when they met during their walks along the road as they took their dogs out at night or let their children play in the cul-de-sac. Most of the neighborhood knew one another at least by sight because they gathered once or twice a year for a 4th of July picnic, neighborhood yard sales, or a Christmas open house. They made connections, and they didn’t feel alone.
Continue reading at https://multiplesclerosis.net/caregiver/expectations/
Delirium and UTI’s – What’s The Connection?
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 the child deal with the stressor using whatever limited tools they have within their immediate toolkit and
(2) trying to keep from becoming the center of attention wherever they are so that their child is not embarrassed.
The picture with this post is of four of my grandchildren. Each of them has special needs. Three of them have conditions that can become life-threatening in less than an hour from start to finish. By looking at the picture alone, only one of them appears to need special accommodations to participate in school, church, scouts, or any other activities of childhood. They easily blend in with everyone else. However, a ton of preparation time is required to help make it possible for them to participate in these activities.
Special needs parents have a tough job. They want their children to be children. They want them to get dirty, to run and play and fall and get skinned knees just like when they were kids. They do not want their little ones to be worried about getting infections or becoming exposed to chickenpox. However, if they ignore the risk and don’t teach their children how to advocate for themselves, their child might die.
Therefore, special needs parents must take precautions every day, which makes tomorrow – the first day of school – especially hard. Tomorrow these four grandchildren of mine go back to school for their first day of this new academic year. In preparation for the big event, each of them received an Individual Education Plan (IEP) that included details about their medical conditions. Emergency information is everywhere. Contact phone numbers with back up numbers are in place. Everything is ready to go, but it’s such a scary time ahead.
Two of the four will probably only make it a few weeks into the school year before they get pulled out. As soon as infectious diseases like flu start popping up, they must leave because it’s too dangerous for them to be there. Even illnesses like norovirus and frankly, the common cold are a significant risk. Two of them have conditions where their bodies do not store energy reserves in their cells. They must eat continuously to get energy. One gets nutrition through a combination of total parental nutrition (TPN), tube feeding, and oral intake, and the other must eat every two hours. Both have a second diagnosis (gastroparesis), where the stomach stops moving. When gastroparesis develops, what they eat does not get digested. The child that eats every two hours has no means of getting food. He is especially at risk if he gets a cold or other illness because he has no method of getting nutrition if his stomach stops functioning. Therefore, his school plan involves meticulous attention to handwashing and separation from children who are coughing and sneezing. They are also supposed to watch him for changes in skin color and darkness under his eyes, and other signs of fatigue or dehydration. Imagine if you are teaching trying to keep up with all of this? Imagine if you are a Mom expecting a teacher to keep up with all of this knowing the burden she has in the classroom?
In my opinion, there are no more significant planners in the world than special needs parents. They must be thinking ahead at least 4-5 steps all the time. They are also excellent detail people. They can detect subtle changes that you and I would not recognize. I am in awe of them. They also run on empty – all – the – time.
They are emotionally drained, physically tired, unappreciated, criticized, and so tired of having to continually fight for everything they need to take care of their little ones. They spend HOURS on the phone with insurance companies just to get the essential items they need in the size they need to care for their child. It would seem to be common sense that a child cannot wear an adult size harness for a piece of equipment. Right? Tell that to the insurance company.
Special needs parents are fantastic and remarkable people. They endure more than most people can ever imagine. The next time you’re in the store and a child is “acting out,” cut the parents some slack. There’s probably a story behind that event, and the child might just be excited and not misbehaving at all!
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 or keeping them clean after bladder or bowel accidents. Wounds would develop and progress with no one paying attention to how bad they were getting because of the location until suddenly, a crater had developed under the skin.
Caregivers, check all skin areas regularly for signs of redness, firmness, hardness or areas that won’t lighten when you push on them (called blanching). If that occurs, it’s a sign that underneath the skin, the wound may be developing. Consult with your doctor if that’s happening.
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, I live the life of a full-time caregiver staying active an average of 18 hours a day, every day, completing necessary tasks like you. So, when I say, I get it, I do. I really do. Been there, done that, and could write a best seller about it.
That’s why though I want to start this website. I’m blessed to have a caregiver’s help during the day, at least for now. My mission is to help others learn to be caregivers.
I’ve heard many stories of families sent home to do procedures after one training session. Thought the family member was afraid of causing harm, they had no choice except to do the care.
In the counties where I live, there are no home health pediatric resources at all. Adult home health is available but becoming more difficult to find. Respite care is not an option. Periodic home health care (i.e., visits a few times per week) can be arranged through an agency to the family, but between visits, the family is responsible for doing the care. I’m not talking about merely changing a dry dressing and putting on a clean one. I mean the family is responsible for performing nursing procedures such as:
• Re-inserting feeding tubes that could go into the lungs.
• Changing dressings on central lines that end in major blood vessels that if contaminated, could lead to total body infection.
• Calculating calories taken during a day, determining what to add to total parental nutrition (TPN) to supplement and adding that to a central line to run as a continuous IV on a pediatric patient.
• Applying new tracheostomy tubes, do sterile lung suction, and trach dressing changes.
• Learn to manage various types of wound evacuation devices.
• Learn to do sterile urinary catheterizations.
• Administer complex wound care that involves multiple steps multiple times per day and may include wounds infected with germs that could affect other family members.
Qualifying to get help for someone else to come in to perform these tasks is difficult. It’s not as easy as it seems. Though children may qualify for Medicaid benefits (i.e., no earned income) resources are not available to them in the rural area. The same is even becoming true for adults as the wages for paying nurses are not as competitive for those doing home health in rural areas as in urban areas. The lack of healthcare resources may be related to wage issues surrounding travel pay vs. hours worked. Travel time between patients is paid as mileage only. Therefore, long hours driving between patient homes (sometimes over a hundred miles on back roads) results in long days but limited pay for actual hours worked. That leaves paying a caregiver yourself and competing with the wages the local hospital or healthcare clinics are paying.
All these factors influence the increase we’re seeing in family and friends being sent home to do nursing care that registered nurses do in hospitals. The impact is that they do the best they can, but they often make mistakes and infections develop or other complications occur. Patients are re-admitted, and hospitals are left losing thousands of dollars annually due to readmissions occurring within 30 days of discharge.
All because families are not trained members of the medical profession and cannot be expected to function as one with one lesson on “how to.” They need more training.
That’s the goal of this website. I want to build a place you can come to and look at training again and again until you feel more comfortable with what you have to do. I can’t be there for everyone, but I can give you a place to come to learn what to do. I can make you some handouts (which I’ll do later) and help you figure out step by step what works. I can lend you support, answer your questions, and help you find resources. Maybe we can even build a network of support together?
A change is needed. Why not start it with this?
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/
began when he was a young teen. His father, who was a carpenter,
experienced difficulty walking. His diagnosis of multiple sclerosis came
soon afterward. His life and that of his family changed dramatically with his
diagnosis because at that time no treatments were available for MS. Lynn
remembers his Dad’s health declining quickly and progressing rapidly from a
wheelchair to a bed and him dying from MS complications before he turned fifty.
Lynn watched as he struggled with depression and the frustration of having
others do everything for him.
that the same would not happen to him, Lynn lead a somewhat healthy
lifestyle. He loved to cook and focused
on eating fresh foods he prepared himself. He avoided preservatives and kept up
with “healthy living through food” trends. He was slim,
physically fit, and rarely got sick. He often worked outside, which exposed him
to a lot of Vitamin D known to be useful for restoring the neurological balance
of the body.
On the other
hand, Lynn was a musician playing in bars and clubs filled with heavy smoking
nearly every weekend. He smoked from the age of eleven through fifty and drank
alcohol almost every day. Following in
his father’s footsteps as a carpenter, he was exposed to lots of glues, paints,
solvents, arsenic, and other harsh chemicals which may have been harmful and
contributed to his condition.
SYMPTOMS OF MS
When I met Lynn, he was the picture of health and had a positive mental outlook. He was confident he would never have MS. When Lynn first started having symptoms of MS, he denied that the problem with his foot-dragging could be MS-related. He said because once he rested, the symptoms went away, it could not be MS. However, the dragging was a frequent event.
developed a limp. His doctor thought it was sciatica due to sitting on
his billfold. He was referred to a chiropractor and a physical therapist
and changed how he carried his money, but the limp continued.
New problems began to surface. Lynn started having trouble passing his urine. Since he was in his 30’s, he rationalized that maybe his prostate was starting to enlarge. His primary care doctor prescribed medication to stop bladder spasms and to reduce the size of his prostate. When his hands stopped moving in unison, the differences in speed was not as easy to explain. True, the difference did not occur all the time, but still, the difference happened often enough that something was wrong. Still, Lynn refused to consider it might be MS.
Heat intolerance was the next symptom. Heretofore, he could tolerate heat well. Working outside was never an issue; he could stay out and fish all day in any hot weather without any problem if he had a cold drink. Suddenly, he could not tolerate any heat. On relatively warm days, not even scorching day, he felt like he was melting in the heat and could not go on.
TESTING TO CONFIRM DIAGNOSIS
One thing leads to another, and he received his diagnosis of MS in 2006. The head MRI the neurosurgeon ordered (see “Our story”) showed lesions. The neurosurgeon sent him to a neurologist who ordered confirmation blood work and a lumbar puncture. The lumbar puncture was painful. His lower spine curves and they had a difficult time inserting the lumbar needle. He was stuck three times, and at least one of the areas leaked spinal fluid afterward. He had the mother-load of a headache for two weeks after that. He would go to work and lie on the floor with such a bad headache he could not raise his head; it hurt so bad. Finally, he went to the emergency department, and he received an IV of caffeine and pain medicine, which helped.
When the multiple sclerosis diagnosis was confirmed, he was referred to an MS specialist who helped him enroll in a research study. Unfortunately, the drugs didn’t keep the condition from progressing. There are four types of MS. He has the most progressive type. His condition progressed steadily from limping to using a walker to needing a wheelchair and now requiring a powerchair. He no longer can use either of his legs. Though he can move them slightly, he can voluntarily position them or use them for weight-bearing. His right hand has movement but no useful function currently. His left arm has most of his remaining ability. He can still write on occasion and use that hand to move some objection with significant effort.
Due to bladder spasms related to a neurogenic bladder, he requires intermittent catheterizations to void. His weakened abdominal muscles also necessitate the use of a bowel regimen to help with a bowel elimination program. Due to frequent hospitalizations, chest and diaphragm muscles are weak compromising his ability to clear lung secretions. Unfortunately, an increase in hospitalizations due to pneumonia resulted due to difficulty in clearing lung secretions effectively. Efforts to improve lung capacity are underway with Lynn choosing to practice songs from choir and radio improve his breathing rhythm.
In the meantime, he has also developed hypothyroidism, vascular dermatitis, and high blood pressure. His mitral value had to have a clip placed two years ago. He fell from a lift we were using in 2018 and had a severe head injury with three brain bleeds (all resolved now) and other fun and games I’ve just chosen to forget. We’ve learned that one autoimmune disease often leads to another.
A YEAR OF
The year we
found out Lynn had MS was one full of challenges. First Lynn heard he had MS on our way back
from an anniversary trip to the beach. A
few days later, a hurricane came by, causing us to lose power for several days.
After getting the power back, we discovered that a tornado had sent a tree through
the windows of our car. When I called
Lynn to tell him the car was totaled, he told me he was waiting to hear if he
had a job anymore. Later that day, he
got the word that the entire department was outsourced. He had about eight months before they closed
the shop to find a new job. He left there and started a drafting business out
of our home that lasted only a few months. Unfortunately, the economy tanked,
and the orders for business dried up quickly.
A few years
after we were married, we bought land and Lynn drafted plans for a new
house. He wanted to build one for us
instead of living in the house that my first husband and I bought. After finishing the basement; however; Lynn
was too weak to continue to work alone. Whenever he went to the land, I went
with him to mix the mortar. I guess you
could say mixing mortar was my first caregiver role for him.
FINDING A NEW CAREER
Around that time Lynn stopped driving because his spasticity became too extreme
for him to apply brakes; plus, he had to stop playing drums because he could
not hold the sticks. He had so much
talent, but there was so little he could still do.
His son came
up with an idea for him to try writing. He could type, not fast, but he
could use one hand. He decided to give it a try, and he enjoyed it. He
got the idea for a book, and in four months, he had written a novel. I helped edit it, and he submitted it for
publication. They took it! His first novel was published and released in
April 2009. Rising Tide.
Now in 2019,
he has released three books in the Rising Tide series (Rising Tide,
Eden’s Wake, and Deadly Reign) A fourth book, Terminal Core, is an independent
sci/fi/fantasy story. His fifth book, Dalon Con, is currently being
edited for release soon. It too is a stand-alone novel.
challenges of MS, Lynn chose to make lemonade out of lemons. He says
he feels God’s blessing in his life every day and knows that God still has much
for him to do. He now uses his
creativity to spread the news of God’s love through the stories in his novels. Look closely as you read his works. You’ll see
the thread of good triumphing over evil through the power of the Mighty One.
Hi, my name is Donna. I’m the wife of a Multiple Sclerosis patient, Lynn, diagnosed in 2006. MSCaregiverSharing, my original blog site, was dedicated to telling the story of how I adapted to being both a caregiver and spouse to someone with multiple sclerosis. As part of that story; however, the fact that we had recently married and it was a second marriage for both of us, played a factor in how we adjusted. As is true with many second marriages, especially those with children, relationship issues associated with old baggage, got in the way of how well we dealt with the onset of a chronic health condition.
BEFORE WE MET
After my divorce, I shared joint custody of our two children, Sarah nine (9), and Daniel six (6) with my ex-husband. Thought a year since our divorce, conflicts continued between us related to the care and treatment of what I perceived to be signs of obsessive/compulsive and classic phobia disorders in our daughter. We had a significant difference of opinion related to the existence of whether she had an ongoing medical problem that needed treatment or if she had a behavior problem instead. Therefore, I spent a significant amount of my time supporting her.
My son participated in a variety of sports. Since we lived in a rural area, that meant a lot of time spent in the van going to and from sporting events. When my ex-had the kids, I worked a second job as a home health nurse to make ends meet. I also was a girl scout leader, taught Sunday school, sang in the choir at church, attended all the children’s special events and had a very demanding job that kept me busy every minute I was not with the children.
Being a single mom with two young children and working full time, my opportunities to meet someone were limited. Why I thought I had time to date was beyond me, but I was lonely. Friends suggested I try social media to screen potential dates. I did, and it worked. I met Lynn by answering his personal ad in Style magazine.
I was drawn to Lynn’s ad because he spoke of how important family was to him, and he shared that he was a Christian. I called the number in his ad, and our first phone call lasted about two hours. We seemed to hit it off well, so we agree to meet to see if the chemistry continued in person. We met at a local shopping mall where he finished his Christmas shopping (on December 23 which should have told me something about him) for his son. We discovered that his son and my son were only three months apart in age and that we had a lot in common. I found out he played guitar and sang in the church choir. My interest steadily grew.
AND THEN WE MARRIED
Lynn and I dated for a few years before getting married. We both were scared to try again and were reluctant to blend our families. Plus, we were both very independent! To be honest, I tried to find reasons not to get married because we were very different from each other. I was not sure we were going to work, but each time I tried to get the courage to break up, I would first pray about it, and God always sent me a message to say, “Stay with it.” So, I did.
Still afraid I might be making a mistake, we moved forward with the wedding on October 11, 1997. At the wedding, Lynn’s son was bitterly unhappy throughout the service, and by the time we left for our honeymoon, my son was crying as well. I wondered throughout the ceremony if I was crazy as I looked at the children and then thought of our differences, but God had a plan.
As predicted, our first few years were challenging. Our parenting styles were decidedly different. Lynn did not operate on a schedule, would not commit to any specifics on anything, and did not like structure. I crave structure, need closure, and don’t like waiting to the last minute to do anything. To say our styles clashed would be an understatement. Our marriage survived and became stronger, however, because we had committed it to God and each other and would not go back on that promise.
CAREGIVING FOR MY DAUGHTER
During this time, my daughter continued to need a great deal of support. Often, I spent more time with her than with Lynn. I found it a challenge to give both what they thought they needed from me. At times conflicts arose over whose needs came first. Lynn was very understanding that Saran needed a great deal of help through her struggles, and without that encouragement, my ability to support Sarah would have become compromised. However, her needs were so great at times that he would feel neglected and wonder if I even cared about him at all. It seemed I was always putting her first because her needs were always greater, yet he was my husband. It created an issue between the two of them for a while as well.
FINDING WAYS TO BE TOGETHER
One of the ways we worked at developing our relationship was through our church activities. Lynn and I both liked to sing. He was terrific at it, and I just wanted to do it. My talent was drama, and when our church began a 17th Century Dinner Theater, I jumped at the chance to become involved.
Since Dinner Theater involves singing both Lynn and me participated. We both loved it and made many good friends. From that experience, we expanded our participation into other roles at church – Lynn joined the praise band, and I started working with a drama team. We both were still in the adult choir, and both also started playing handbells. I became involved in a support group, Discover Freedom, whose purpose was to provide encouragement and support to those fighting the challenges of addiction or who needed a group to help them find freedom from whatever struggles they were encountering. Lynn and I were very busy, and the activities were bringing us closer together while also creating a solid support group for us at our church.
THEN MS STRUCK
During this time, Lynn began to notice his foot-dragging after he would run (he was devoted to exercising and tried hard to stay in shape and work out every day). The “foot drop” effect was randomly causing him not to pay much attention until his right leg started bothering him as well. It would occasionally seem to give out on him.
I knew his father died in his 40’s from complications of MS. I asked him if he thought his symptoms could be related to MS? He said he had asked the doctor about MS, and the doctor did not believe his symptoms were MS-related. Indeed, the physician prescribed physical therapy, and his foot got better.
However, the foot weakness kept coming back, and the physical therapy was not helping it improve. I mentioned MS again, and Lynn kept denying that was the cause. One night, I saw Lynn testing the movement differences for the fingers of his two hands. He would wiggle the fingers on both sides, but one hand was moving much slower than the other. That alarmed me. I confronted him with what I had seen. He denied it was anything of concern, but having a nursing background, I knew something neurological was wrong. I feared MS or some other neurological condition.
HE GETS DIAGNOSED
I was a little frustrated that his doctor wasn’t finding out what was wrong with him. Plus, I was frustrated with Lynn, too, because if a doctor did ask him how he was, he always said, “If I was any better, I couldn’t stand myself.” I knew he was not sharing all his symptoms, so I told him that from then on, I was going with him to all doctor’s appointment. I knew I had to go if I wanted to know what was shared and what was said.
His next appointment was with his cardiologist (He has mitral valve prolapse). His heart seemed fine, but his doctor asked me if I had any other concerns. I told him, “not about his heart, but he’s got something wrong in his upper back.” He asked me who I wanted Lynn to see. Fortunately, he was able to get us the appointment I wanted, and Lynn was scheduled to see a neurosurgeon. I thought if it wasn’t MS it had to be a problem in his spine. It might not be in his lower back since the symptoms were appearing in his hands. The neurosurgeon agreed with me and ordered a head and neck MRI.
After having the MRI, Lynn and I went to the beach for our anniversary. On the way back, we got the news. Lynn had MS. Though I expected it, I still felt like I had received a kick in the stomach. He, of course, felt worse. He had seen what MS did to his Dad, and he didn’t want his son to see him reduced to the disability in the same way. He cried outside, unloading the car. I cried inside as I unpacked the bags. Then, we cried together. So, began the testing, the treatments, the years of shots, and the steady decline in his abilities.
The children have now grown up and are out on their own. Our daughter married a very supportive young man who took my place in caring for her (and does a fantastic job of it). Both boys are now married as well with wonderful, caring wives. We are blessed beyond measure with each of the choices our children made in spouse selections. We “socially” adopted an adult friend of our daughter’s, whose parents are no longer living and asked her to become part of our family in 2018. Of greatest joy; however, is the addition of all our grandchildren. We have four biological, three from our adopted daughter and possibly two more adopted children coming shortly. Nine grandchildren! What joy!
His neurologist says Lynn has Primary Progressive Multiple Sclerosis, the rarest form of MS. Since his diagnosis in 2006 he has gone from being very healthy and able-bodied to being in a powered wheelchair and unable to do very much without assistance. He has a neurogenic bowel and bladder and needs assistance with all activities of daily living.
For many years I worked remotely and balanced a full-time job with full-time care responsibilities for Lynn. Now, I am retired and am fortunate to have a Monday through Friday caregiver to help me provide Lynn’s care while I work on this website as a part-time job to supplement my retirement income. It’s still a 24/7 responsibility; however.
The purpose of this blog is to share with you the challenges and joys I’ve experienced as a caregiver. They are often raw and heartfelt and very personal, but sometimes it helps to relate when you feel alone. I hope you find some support through this sharing.
Feel free to comment with your experiences as well.
MS Caregiver Donna
In my blog, I sometimes mention medical options, give information about treatments or medications, or explain what I know about a condition, etc. Information provided is based on my limited knowledge of the topics presented and how they apply to Lynn or me. Please do not consider this medical advice. Everyone’s situation is different, and the only way to make sure you get what you need for your case is to have your healthcare provider evaluate you and develop a treatment plan just for you. Therefore, please keep in mind the opinions mentioned here are strictly my own. The opinions do not represent anyone other than myself and are not a substitute for your doctor. Thanks
MY CAREGIVING JOURNEY
I first became a caregiver raising a child with special needs. That marriage became a statistic of caregiving marriages and ended in divorce. I remarried a few years later to a man supportive of my role of caregiver. It was ironic in a way because, within a few years of our marriage, his diagnosis of primary progressive multiple sclerosis resulted in my becoming his full-time caregiver.
As I have interacted with other caregivers and the healthcare system over the past thirty years in caregiving for my child, my spouse, my mom, and now, my grandchildren, the lack of support for family caregivers is a glaring deficit in our healthcare system. We expect untrained and unprepared family members, often still in shock over what has happened to their loved ones to go home and care for them in the same way a nurse provides care after four years of training. Then they wonder why hospitals have such high readmissions rates after discharge?
- Don’t have the emotional support they need for their well being
- They don’t have the training they need to problem solve the unexpected
- They don’t have the knowledge to know how to prevent problems
- They don’t have the resources available to make their jobs safer and more comfortable to perform
- They don’t get the rest they need to be able to be safe for themselves and the one under their care
- They don’t know where to go to get help, and they don’t have the time available to research where to go to find it
Once I retired, I felt a strong desire to reach out to other caregivers to help them in a way that was not available to me when I needed it. I didn’t want anyone else to go through what I had suffered. So, I started researching the internet to see if anything currently existed like I had in mind. I found that many agreed there was a need, but few offered solutions. Some universities offered support to their family caregivers using their facilities. There are also some other caregiver blog sites trying to do similar work. I applaud their efforts and hope this trend continues.
For now, my mission is to reach as many caregivers as I can
- to find resources for new and current caregivers for information and training. In some cases, I may produce the information and training, and in others, I will provide the link.
- to promote products and equipment that make life better for the caregiver or the one receiving care in some way.
- to provide consultation or problem-solving assistance to families or facilities
- to promote a community of caregiver that encourages individuals to privately share their stories and lives for emotional support reducing feelings of isolation
- regularly sharing topics related to caregiving through blogs with an open discussion to promote lively discussion and exchange of ideas
- to occasionally gather data from members through surveys regarding issues of interest supporting caregiving
With God’s blessing and your support, I’ll be successful on that mission.
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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/
How prepared were you when you first became a caregiver?
Did you know what to do, 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?
Do you know the moment your life changed, and you became a caregiver? Perhaps the “moment” occurred suddenly through an accident or following a major complication of an illness? Rather than a “moment,” was the transition to caregiver a process that evolved over time as you assumed more and more responsibility for someone else’s life on a daily basis until one day you managed it all? Or, was joy turned into fear when your world turned upside down as a new baby arrived three months early along with an endless list of medical conditions you couldn’t even pronounce? Over 43 million people in the United States experienced one of those “moments” in their life leading them to accept the call to be an unpaid caregiver a family member in 2015. I would guess that number would be much higher now.
Forty-three million caregivers providing care to someone who cannot take care of themselves. Think about it…Think of how much those people save the government in providing care to their family members. Think of how many more hospitals and healthcare providers would be needed to provide care if these angels were not there. Knowing how much help they provide and how much they save the country in resources, they should be able to get help to do what they do but sadly, that is not the case. Most of you have not been so fortunate.
Figure 1: Estimates of Individual Caregiving Prevalence by Age of Recipient
|Type of Recipient||Prevalence||Estimated Number of Caregivers|
|Only child recipients||1.6%||3.7 million|
|Only adult recipients||13.9%||33.3 million|
|Both adult and child recipients||2.7%||6.5 million|
Most new caregivers learn their jobs by trial and error. If a family member was recently hospitalized, the caregiver may have been shown how to do wound care or other procedure at least once before discharge and given a copy of printed instructions. Assuming that home health nursing gets approved, a nurse checks in with the family after discharge to go over those instructions and to ask if the family needs help with anything. Other than those resources, doctors and nurses tell the family at medical appointments what they need to know or provide brochures during appointments with information about the medical condition and how to get more information. In today’s environment, most information is gathered from the internet. Family members search the net for what they can find, hoping to locate reliable information that meets their needs and can answer questions they may not know to ask. Often the search leaves them frustrated and confused, still uncertain what they need to do.
One of the greatest failures in our healthcare industry is the failure to provide support to the family caregiver. A tragedy occurs. A significant other is grateful for the miracle survival of their loved one. Financial resources are limited. The patient improved and discharge approaches. Nurses show the family how to do dressing changes. They talk about cleanliness and if what if this happens or that. Instructions are written down. Plans are made and the patient discharged to home. Orders are written for home health which essential means maybe a one hour visit daily in rare cases or an hour visit 2-3 times per week to check on the status of the patient. The rest is up to the family.
The reality of what just hit them sets in about the time the family opens the front door of their home and they have to figure out how to get this very weak individual into their home and to their bedroom because often steps are the first obstacle to be breached and getting up them is a problem. After that, it’s a question of leaky body parts in the bed, helping to change positions, and how far away is the bathroom? Followed immediately by the question of, “which pills did she take today at the hospital and which ones still need to be taken today? This discharge paper doesn’t say. Oh, and the pharmacy was closed by the time we came by this afternoon. Now I don’t have anyone to stay with Mom in the morning while I go pick up her medication.”
When it’s time for the first dressing change, another reality hits home—they are not in a hospital setting where all the wound supplies are located at hand’s reach. They need to set up a workstation for their supplies. Plus, they have forgotten how to do sterile technique and there was a new looking spot on his butt that wasn’t there before. What do they do with that?
New caregivers feel overwhelmed. Many feel sure they might cause more harm than good and fear careless mistakes might cause them to hurt their Dad based on incorrect assumptions. They have no role models, no one to mimic or call for a quick “how did you handle this?” type of question. They feel isolated and alone. What’s worse is that they feel if they complain, they may be criticized for not wanting to provide care for a parent or spouse and may appear to be seemingly ungrateful for years of prior care themselves. Thus, the new caregiver begins to feel not only insecure but isolated as well.
Over time, holding in these feelings leads to resentment, anger, frustration, depression, and if care is needed for a long time, eventual compassion fatigue or caregiver burnout. In both situations, the caregiver’s own health suffers, as well as, their emotional well-being. In many cases, the person receiving care often survives longer than the one providing the care because caregivers tend to neglect their own well-being to provide for the one under their responsibility instead.
The picture of isolation and despair is one I hope to change and why I started this website. I have felt and still feel all those emotions at times. I know how you feel because I do what you do every day, and I want to help stop the hurt.
I am retired now and have someone who helps me during the day shift. I want to use that time when I have help to provide some support to those starting out and to encourage those who are already in the role to continue their walk through working together to strengthen one another. I think what I have to offer can make a difference in our lives if we all pull together and share what we know, and I’m will to coordinate that process to help make that difference. I hope you will join me in making that difference.
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.
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.
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.