Caregiver dilemma: I’m scared of doing it wrong

Becoming a caregiver for someone you love can be a wonderful, but terrifying experience.  If you approach the experience with a deep love for your family member and the determination to make sure they are safe, loved and fulfilled as a human being should be then you will be wonderful as a caregiver!integrity

My most terrifying moment as a caregiver was the day we brought Dad back home.  He’d arrived via medical transportation and shortly afterwards I was alone with him for the first time.  I stood there scared beyond everything.

I was completely responsible for Dad’s health and well-being.  I had completed the coursework, testing and clinical experience required by my state to do this work.  I even had the little piece of paper to prove it!

But as I stood by Dad’s bedside that fateful afternoon I was nearly paralyzed with fear.  I was scared that I would do something wrong.  I was worried that I would cause him unnecessary harm with my ineptitude.

I took a deep breath.  I exhaled.  I did it a few more times – just to make sure I could.  I decided to start with the basics of caregiving.

I took Dad’s hand, told him that I was going to do my best for him and that I may have a bit of a learning curve.  I let him know that everything was going to be ok.  I spent several minutes talking to him, holding his hand and comforting him.

In comforting Dad I found that I was also comforted.  In telling him everything would be ok I felt that it would be ok.

I began to relax.  The fear that had frozen me dissipated and I was able to begin providing the personal care Dad needed.

There were times I made some mistakes, those mistakes didn’t make his condition worse.  The mistakes were a part of my learning curve and I did learn from them.  I used these lessons to provide even better care for Dad.

In the end I knew I had done everything I could to honor my father.  I had given him the care he needed.  I had ensured that his final days, weeks and months had been spent surrounded by love.  I do not regret forcing myself through my paralyzing fear – I would do it a thousand times over.

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Dementia’s Impact on Fall Risks

The National Council on Aging has many resources to help adults build a foundation for longevity and prevent falls.  Currently, 1 in 3 adults 65+ falls each year.  Fall risks are usually the product of a combination between physical condition and environment; however, individuals with dementia are actually 4-5 times more likely to experience falls than older people without the disease.  There are many different types of brain disease that cause a wide range of physical and mental complications.  Here are a few common ways that dementia increases the risk of a  fall and what to watch for in a loved one with dementia:

Disorientation:  A large part of our stability involves awareness of surroundings, judging distances, knowing where we are and what we can expect from our environment.  When individuals with dementia become disoriented not only can they lose their ability to judge an environment properly, their increase anxiety puts them at greater risk.

Changes in gait and mobility:  As parts of the brain that coordinate our fine and gross motor skills are impacted by dementia, the way we walk and move changes dramatically.  Some types of dementia such as Parkinson’s can have a greater impact on ambulation and coordinating movement.  These changes may occur slowly over time and often a fall will alert family to the extent of the changes.

Changes in vision, hearing, and balance:  Our senses naturally decline with age; however for those with a dementia, the parts of the brain that coordinate our hearing, vision, and balance can be greatly impacted very quickly.  Any one of these senses contributes to our stability as we make our way through our homes and communities.

No memory of present condition/ mobility limits:  The different types of dementia are often associated with a range of difficult behaviors.  These may include yelling, unfiltered speech, repeating questions, refusal of care, etc.  Wandering is quite common in those with dementia as well as a desire to return home for those in a memory care facility.  This behavior uniquely impacts the risk of a fall as individuals can be so focused on getting where they are going that they are not able to take precautions in moving safely.  Increased agitation can compound this situation as well.

Dehydration:  As we age, we naturally feel less thirsty.  This can put seniors at risk for dehydration and range of other complications such as urinary tract infections.  For those with dementia who are not able to remember their needs, this is particularly an issue.  Dizziness or lightheadedness and headache from dehydration can greatly increase the risk of a fall in addition to these other complications.

Difficulty problem solving and adapting to new environments:  Many times families will rely on professional facilities to provide nursing and day-to-day care for a loved one with dementia, especially during the mid to end stages of the disease.  Adapting to these new environments would be difficult for anyone, but especially for those with dementia.  Confusion and an inability to problem solve can increase the risk of a fall as individuals with dementia lose their sense of what is safe or not safe to do in a particular environment.

Hallucinations/ delusions:  Some types of dementia can cause individuals to have hallucinations or delusions.  These types of experiences can erroneously heighten their sense of danger and cause them to behave rashly.   The increased anxiety and false sense of reality can increase the risk of a fall.

Lack of judgement/ inhibition:  The frontal lobe of the brain is the command center, filter and brake pedal for our actions.  It is the rational voice that says, you probably shouldn’t say that or do that action.  When dementia impacts this part of the brain, those filters and brake pedals deteriorate and no longer inhibit individuals with the disease.  This changed judgement and fading access to memory can greatly increase the risk of a fall as the individual may no longer be able to appropriately judge the limits of their environment and body.

If you are a caregiver providing or coordinating care for a loved one with dementia, we understand how complex and emotionally challenging the responsibility can be.  Our well-being has many components.  In fact, our lives are surrounded by a complex web of needs and desires.  When a loved one is diagnosed with a type of dementia, it is common for a spouse or adult children to become the hub of care, managing several categories of needs.  Professional Care Managers are pivotal in assisting families at the hub to simplify, coordinate, and proactively guide the care of a love one.

Side note from the blogger:  This is an article I found from a publication put out for seniors in my community.  The publication is produced by our sheriff’s office and is called S.A.L.T. (Seniors and Law Enforcement Together) Times.  The only notation as to it’s original source is Sound Options.  I would like to give proper credit to the original writer of this article, if anyone can help me find the author I will make sure they’re given credit where credit is due.

 

Nothing’s better than comfort food

There’s something special about sitting down to a hearty soup when the weather’s cold and blustery outside.  I honestly think it provides comfort to the soul, peace to the heart and when it’s also healthy, serenity for the mind.

This beef barley soup hits on all three counts, and since you can pop the ingredients into your slow cooker to simmer all day it also provides a stress free dinner!

Beef Barley Soup

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Shocking and unbelievable

I must admit that social media came into my life at a time where I had already learned some understanding of what should and should not be publicly shared.  I also had learned from a young age to follow the golden rule.

So, when I read about the idea of nursing home caregivers posting pictures to social media showing seniors in their care in deplorable conditions or being abused I was beside myself in outrage.  This level of cruelty and depravity cannot be understood or explained away.

Sadly, it is also a symptom of the nursing home industrial complex we have here in the United States.   In a country where the monthly costs of such care can run as much as $10,000 and there are little to no regulations as to caregiver to resident ratios it is unsurprising that those caregivers who really care about the seniors in their care burnout and quit the field entirely.  This leaves behind those who could care less about those in their charge allowing such heinous acts to be committed.

While corporate big-wigs reap huge salaries, overworked and understaffed the caregivers can barely make a living wage.  They often do not have the supplies on hand to provide proper care (gloves, cleaning supplies, adult briefs to mention a few).

Imagine the pain in the heart of a good, caring caregiver who has to show up to work day after day knowing they will never be able to interact with their charges as the human beings they are.  That they will never be able to adequately provide even the minimal amount of daily care because they are stretched so thin among all their charges.  While doing your job you will be barely earning enough to keep yourself housed and fed with your heart being torn out with each moment of heartbreaking toil there is little wonder that they burn out.

The regulations regarding the posting of demeaning photos on social media by caregivers are sadly necessary at this time, but I feel that it would be a better use of Congress’ time to search out what is causing the climate of unfeeling caregivers to propagate.  Perhaps requiring higher staffing levels and allowing the resident to caregiver ratios be based upon resident needs rather than straight numbers will allow the good caregivers to wish to remain in the industry and weed out the bad apples in the bunch.

Here is an article in NPR regarding the posting of demeaning photos on social media:

Exploitation on social media is a form of abuse

24/7/365

When caring for someone with dementia or any other illness that robs a person of being able to do for themselves you really sign on for a job that’s 24/7/365.

You help with bathing, dressing, grooming as needed.  You make sure meals are prepared and hope they’re well received.  You make sure doctor’s appointments are made and gotten to on time.  You make sure that doctor’s orders for treatments and medications are followed.  You keep your loved one safe from others and often themselves.  You are their protector, shoulder to lean on, and champion.  You give wholly of yourself for their welfare.  Your entire focus is on their needs.  You are their hero.

This is the life of a caregiver.  This is part of the reason I love what I do.  I get to be the hero to the caregiver.  I come along side them and offer them a chance to recharge their batteries.  I step in for a few hours to take some of the burden from their shoulders.  I look them in the eye and say, “I’ve got this, go take some time to be good to yourself.”

For a caregiver to have a few precious hours to take care of themselves is huge.  It is a chance to breathe.  It is a chance to connect with the outside world.  It is an opportunity to decompress from the stresses of life.

So, dear caregiver, here’s hoping you have someone in your life who can say “I’ve got this for a while, go take some time to be good to yourself.”

For those of you who know a caregiver, could you think about coming alongside them?  Even a few hours can make a huge impact on the caregiver’s ability to continue.

Who cares for the caregiver?

Be gentle with

A caregiver is someone who gives from the heart to the point of forgetting about their own needs.  A caregiver will miss out on sleep, ignore their own health needs, miss out on time with friends and other family and basically put all their needs on the back burner.

stress

Taking care of yourself as a caregiver is very important.  This means doing what you can to get enough sleep, take care of your own health and take time to have some personal time.  In caring for yourself as a caregiver you are making sure that you will continue to be able to provide excellent care.

This is easier said than done.  Believe me I know!  As a caregiver it is easy to get caught up in the needs of your loved one and forget your own needs.

You need to create a support system of family and friends who will step up and give you a break, even if it is only for a couple of hours a week.  If you don’t have the kind of relationships where you would feel comfortable asking for this help, there are companies that specialize in providing respite care.

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If you know someone who is a caregiver ask them if there is anything you can do to help.  It can be something simple like helping with yardwork or housework.  You can offer to visit with their loved one so the caregiver has a chance to run some errands or go out for coffee with another friend.

You don’t have to be a professional caregiver to help care for a caregiver, you just need to be willing to step in and offer your support.