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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.

What Resources are Available if I’m Not Around Anymore?

The way you become a caregiver has a significant impact on how you adapt to being a caregiver.

About this time last week, I was experiencing discomfort in my abdomen. As the hours progressed, the pain got worse until eventually it was so intense that I was vomiting. Unable to sit up, I was lying on the floor moaning in pain with no access to help within reach. Fortunately, Lynn heard my moaning and used his emergency response button to call for help. The dispatcher was able to summons the rescue squad and contact my daughter to come to our house to stay with Lynn until his son could arrive to take over (she has a special needs child she had to get home to before her husband left for work).
As I lay on the floor in agony, what was going through my head? I need to find a break between vomiting to put a Foley catheter in Lynn or his bladder will become too distended. I waited for my next break after vomiting and while doubled over, collected catheter supplies and inserted it before I was unable to remain upright again. At that point, I was able to focus on me.
Continue reading at: https://multiplesclerosis.net/caregiver/what-resources-are-available-if-im-not-around-anymore/

When is a Nurse Not a Nurse? When she's a Family Caregiver.

My first career in life was as a registered nurse.  I graduated in 1978 with a diploma in nursing and obtained my BS in 1980.  I was fortunate to have a position that allowed me to learn lots of new procedures that I would teach to others so I had exposure to all types of products, procedures, and knowledge.  Though I left nursing after my first child was born to begin a new career, I kept abreast with many of the changes. I even did home health care for a while as a second job.  I fully believe that God used those experiences to prepare me for my current role as a family caregiver.
We have had a home health nurse overseeing Lynn’s wound care for several weeks now.  I was telling her last week, that we really did not need her anymore because the pressure ulcer is nearly healed.  All I had needed her for anyway was a consultation to make sure I had the supplies I needed to care for the wound.  I could not get them as a family member but I could if I asked a home health nurse to get an order for them.
It’s been a bit frustrating at times being a nurse but unable to “be” a nurse as a family member.  When Lynn was in the hospital I assisted with all his care except managing machines.  I was unfamiliar with those so I either left them alone or had someone teach me how to manage those too (not something they would usually do).  I would do my own assessments of his body and vital signs and consult with the medical team regarding what they observed.  I still do that.
When I call in to the doctor, I have already taken vital signs, I give sizes and descriptions of skin breakdown, I describe sounds or smells that indicate problems, I have “home” kits that I use to determine if infections are developing.  I do all these things and his doctor’s trust that I know when something is wrong and they listen to my recommendations.  I am truly part of his care team.  However, because I am the spouse, I cannot “order” supplies except through home health.  I cannot get reimbursed for care provided such as wound care because I’m the spouse.  The home health nurses have not once done his wound care.  I do it.  I tell them what I’m using, what I think is going on, how it’s healing, what supplies I need, and they go along with what I say.
Not so with insurance companies.
If there is a family relationship, you lose all credibility with them.  I get “stripped” of my license when I try to justify care needs.  So I’ve learned to get what I need by getting an order for home health (which is a waste of money for the insurance company since I could easily do this without them paying for a home visit). Just another problem that exists in our health care reimbursement system.
…Just like not paying for preventive care….don’t get me started on that!
There’s another time when a nurse is not a nurse when she’s a family caregiver; that’s when she tries to tell her spouse what to do.  I have so many times told Lynn he was developing a “condition” of some sort.  I would warn him that he needed to go to the doctor to get such and such.  However, he won’t go until the situation is so bad he’s in pain or can see for himself that it won’t heal alone.  I get no credit for what I know.  Yes, I’ve “told him so” a few times now and he even admits that he needs to listen to me but there’s something in his ego that just won’t let him take directions from me.
I also realize that as a family caregiver, I’ve become his enabler.  I realize that he would probably have more “abilities” to care for himself if I was not here to do so much for him. When he’s tired, he just won’t “do” for himself. He calls me.  If he was in a facility or had someone who was not family caring for him, he would likely have to do it himself or not get it done. He would not be happy and he might have long waits, but I often wonder if I’ve done him harm by always being there to help.  On the other hand, I know that if I had not been there to watch over him, he most likely would have not lived to this point because I have caught and/or prevented so many medical issues for him before they became serious.
So, my medical background is a true blessing from God.  He’s provided me with the knowledge, skills, and abilities to care for the husband He gave me.  Though He has not led me to “be” a nurse, He has led me to “be” His healing hands for Lynn.  For that I am very grateful and we are both truly blessed.