Emotional Impact of Caregiving

identifies the many emotions experienced as a caregiver, why they occur and how they affect the individual.

Were You Prepared to Become A Caregiver?

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?

Daily challenges of 24/7 responsibilities without relief or a solution seem overwhelming. The caregiver is pulled in so many directions life becomes out of focus and lived from one crisis to the next with just survival as a goal.

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
Overall 18.2% 43.5 million
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.

Insurance pays very little of the expenses incurred for taking care of someone at home. Preventive care is rarely covered and co-insurance is often very high. Some conditions considered pre-existing or rare are not covered at all.

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?

Caregivers become overcome with emotion due to physical exhaustion and lack of sleep. Many wonder how they will find the energy to take another breath much less provide another day of care.

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.

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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 a way 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.

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Could MS Be a Blessing?

Many caregivers find strength, comfort, and support from their faith. Physicians report that patients who have strong belief systems recover from major events quicker and seem to have better success rates than those who have no belief systems.

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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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/

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Finding the Will to Live

Let me start by saying that I’m not a psychiatrist nor a licensed counselor so what I mean is based on my own experiences in talking to others with disabilities, my own experience with family members, and my personal beliefs. Therefore, you may or may not agree with me, and that’s fine because this is a very delicate topic and one which creates a lot of emotion in people.

When a person has a chronic health condition that cannot be cured, depression is prevalent. When the disease also affects the neurological center of the brain, the likelihood of depression is even more significant since the natural chemical reactions that would typically help the person stay balanced may be impaired. Therefore, for people with secondary or progressive MS, depression is common and often a struggle.

Loss of Direction or Purpose:
Though MS can affect children and teenagers, it most often affects adults. Once we reach adulthood, we have created in our minds our vision of what our life will be. We’ve thought about getting married, having children, getting a job, or establishing a career. Maybe we have bought a home and have a car(s), so we have a debt. We may have gone through years of school or training and “paid our dues” ready to launch into the rewards of our efforts and then something like MS hits. Maybe it’s been there lurking just under the surface with some minor annoyances like in Lynn’s case, or perhaps it hits with a vengeance, and an immediate loss occurs that may or may not be permanent. When that happens, the breaks are put on, and both the person with MS and their caregiver slam into a wall.

In addition to coping with the loss of function, there is also the loss of the dream. Lynn was a musician, an excellent tenor, and an incredibly talented carpenter and builder. He could do so much, but most of it required physical labor and dexterity. Over 2-3 years, Lynn’s MS rapidly progressed. His doctor could never quite say if he had Secondary Progressive MS (SPMS) or Relapsing Remitting (RRMS), but I think he felt it was Secondary, and we hoped for RRMS because let’s face it, there is nothing out there if you have SPMS or Primary Progressive (PPMS). Lynn was seeing the doctor every three months. Each time his abilities (other than his mind) were a little slower than before. Over 18-months, he lost his job and his ability to play musical instruments or to hold a musical note for an extended time.

He lost his identity, his purpose, and his planned direction for his life. He was the man of the house, the protector who could not protect but instead needed protection. He was the builder, the fixer who suddenly needed all things done for him. He would try to explain to others what to do and became frustrated because it would have been so easy for him to do it himself…before. Over and over again, he would say, “What good am I anymore?” “What am I supposed to do now?” He was angry, scared, and felt physically bad. He could see no purpose for his life and became depressed.

Unwelcome Changes
While he struggled with, “What am I supposed to do now?” I struggled with, “How can I do it all?” I was counting on him to build our new house, bring in a good income, help me keep up with three children, protect us, fix things, maintain the home and car and yard, and so much more that now was MY responsibility. And I didn’t want to do it. I was angry. I was scared. I was tired. I was overwhelmed. I was depressed.

Learning to Live Differently
We set about learning to live with his disability. What worked before did not work now, so we had to get creative in how we accomplished the tasks of daily living. I had so much to learn that he used to do. He had to learn patience and how to tell me what he needed. Our lives changed completely. I found a new purpose in being his caregiver, but he struggled to find any meaning. Fortunately, his son suggested he try to write fiction since he used to love to write when he was younger. He tried it and now has published two books, Rising Tide and Eden’s Wake. He gets up each day and “goes to work” either writing or marketing his books. It provides him with a purpose and a sense of accomplishment, which is what I think is the most significant problem that needs to be fixed for most people suffering from depression. The person goes from having a purpose in life to not having one that they can identify.  Their job is gone; they can’t support their family; they cannot perform the usual roles of marriage or parenthood as they did before, positions that held significance for them before are now limited.  So they flounder in fear, sometimes self-pity, hopelessness, worthlessness, and all those other negative emotions. I think it’s that loss of purpose that makes so many think of suicide.

Pain and Suffering
In addition to the loss of purpose, there is often the pain and suffering of MS. The public doesn’t hear about the pain and suffering. They hear MS and think of difficulty walking. They don’t think about the constant fatigue that makes you want to stop breathing due to the effort, the pain of muscle spasms and spasticity, the overall malaise and heavy feeling and something severe pain from nerve irritation. Pain and suffering that does not respond to treatment. Pain and suffering that seems never-ending and which may very well be.

If this person was a prisoner of war and people heard of treatment happening to them in the same manner that someone suffers from MS, they would wonder how they go on with life. They would see suicide as a justifiable option. They might also see it as the only option.

Reason to Live
However, I hope if you have MS that you do not give up so quickly. This is the sensitive part. My faith keeps me from seeing suicide as a reasonable option. For me, committing suicide means giving up on God. It means that I don’t care about how my family would cope afterward.

 Continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-finding-the-will-to-live/

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