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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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.

Grieving … just get over it – NOT!

There are many misconceptions about grieving and dealing with the loss of a loved one.  The biggest is that it is a linear process and you will eventually “get over it”.  Grief is individual, it is on-going and while we may get to a place of peace we never “get over it”.

Someone has been taken from your world, someone important to you, and you will feel the loss your whole life.  I don’t say this to depress anyone because things can and will get better.  The pain of loss will diminish, but even years later you will find yourself wishing you could have one more conversation or tell them one more time how much you love them.

I recently found an alternative way of looking at the grieving process and like it quite a bit.  Here’s the diagram:

stages of grief

First of all it indicates more of the emotions and layers of feelings than the traditional “five-stages of grief” line would have us dwell on.  I also like the shape they chose to illustrate.  The shape reminds me a bit of a skateboarding half pipe.  When you look at it and think of a skateboarder riding a half pipe you can imagine the skateboarder reaching one level and going back the other direction to another.  They would be in a constant flux between all of the points of the half pipe.

The other thing to take in account with the skateboarder on a half pipe is the importance of remembering to keep moving.  Whether back or forward a skateboarder is happiest when they’re moving, they don’t want to stop in the bottom of the half pipe.  They pass through the bottom on their way but they want to keep moving.

So, the next time someone tells you that you need to “get over” your grief, just tell them you’re riding your skateboard on your half pipe and no one can dictate to you how your ride should go.

Pretending it isn’t there doesn’t make it go away!

Have you noticed a loved one having difficulty remembering recent events?  More misplaced items? Seeing things (or people) that aren’t there? Asking the same question multiple times? Forgetting appointments? Getting lost in a familiar area? Behaving in a manner unlike themselves?

These are red flags for dementia.  You need to make sure your loved one gets to a doctor sooner rather than later.  Don’t make the mistake of thinking that your loved one is too young to have dementia!  My dad was only in his mid 50’s when he was diagnosed.

Getting to a doctor and speaking honestly with them about these concerns is imperative.  There are some conditions that may cause dementia symptoms that can be reversed when caught in time.  If the symptoms of dementia aren’t reversible then there are other reasons to get a diagnosis as soon as possible.  First of all it gives your loved one a chance to make sure their affairs are in order and all their care wishes are known.  Secondly, you have a chance to become informed about their condition and what is needed to care for them as the disease progresses.

Finding out that your loved one has dementia after they’ve lost their ability to think rationally can present you with a miriad of additional problems.  They may not have been paying their bills.  They may have fallen victim to one of the many money-swindling scammers that prey on the elderly.  They may be suffering from malnutrition.  They may be suffering from dehydration. They may not have been taking their medications correctly.  They may have thrown out important documents.  They may have started hoarding, turning their home into a dangerous place to be.  They may not be able to legally indicate their wishes for any part of their future.  If there is nothing in place for a power of attorney or advanced directive you may have to petition the courts for guardianship – a potentially complicated and expensive process.

Then, depending on family dynamics, you have to deal with other family members in denial.  Family members who will try to take advantage of the loved one.  I’ve seen more than one family literally at each other’s throats trying to get all they can from a failing parent or grandparent.  These family dynamics can make something like getting court appointed guardianship even more difficult.  Sometimes a judge will look at the family and appoint a 3rd party guardian.

I’m saying all of this because I figure if you’re reading my blog you; 1) really care about people and your family, 2) want to know the truth of the matter and 3) may be in a situation where this is important to know.  Taking a proactive, involved role in helping your loved one is the best way to go.  Don’t stick your head in the sand and pretend there’s nothing going on, because it will be 1000x worse in the end.

You may find yourself embroiled in legal battles with family members.

You may have to make decisions about end of life care.  Do you know if your loved one will wants to have feeding tubes?  CPR?  Placed on life support?  Antibiotics?  These difficult decisions could be yours to make without any input from your loved one, along with the heartache of never being certain that you’ve done what they really wanted.

If I could have one wish for the millions of families in this country having to face a diagnosis of dementia it would be that the diagnosis is made early and they take that time to get everything in place for when their loved one is no longer able to make rational decisions.

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.

Don’t stick your foot in your mouth

It happens to all of us, at some point in time we will find out someone we know has a terrible disease or is hospitalized from an horrific accident or any number of painful personal tragedies.

For most of us the shock of this news strikes deep.  These are things that happen to people far outside our social bubble.  Your world has shifted slightly on its axis and you don’t know how to interact with those who have been affected.

You go to visit your friend or co-worker in the hospital and freak out a bit by hospital tubes, wires and machinery or by the physical changes that have taken place.  You tell their spouse that your friend or co-worker looks unrecognizable!

You visit your cousin with cancer and shudder when you see her bald head.  You blurt out that it is horrible that they’ve lost their lovely hair!

You want to be supportive, but you need to talk about the feelings you’re having as well.

What do you say and to whom do you say it?

I’ve seen something that is referred to as Concentric Circles of Caring.  This is a good guide to figure out who you should offer comfort and support to and who you can express your more negative feelings to.

Concentric circles of caring

 

The concept is quite simple.  Imagine (or draw if you need) a small circle.  This circle represents the person who has the illness or injury.  They are allowed to vent their fears and concerns to anyone.  They should not have to bear the emotional break-down of any other party.

Around that circle is their next-immediate personal support.  This may be a spouse, parent or caregiver.  They can vent to anyone except the person in the middle.

Now another circle, the siblings, children and close relatives.

And another, this time it’s other family, and friends.

And another, co-workers, and casual acquaintances.

Finally there’s everyone else.

The key here is to offer comfort and support to anyone who is in a smaller circle than yours.

If dealing with illness, death and dying is something you just can’t do with a brave face then offer your support in other ways.  Offer to make casseroles that can be frozen for convenient meals.  Offer to help carpool kids to practice.  There are a lot of day to day things that can become overwhelming for those in the innermost circles, find out what will relieve that pressure from their lives and do what you can to help.

When you need to vent your feelings of pain and anguish at the situation always go to those who are in your circle or one outside of your own.

If you remember to comfort in and vent out you should be able to keep from putting your foot in your mouth by saying something potentially insensitive to someone who’s already dealing with too much pain.

Facing the final days, with Hospice at your side

I held Dad’s hand when he passed.

I held Grandpa’s hand when he passed.

Hospice held my hand during their last days.

I can’t say enough about how wonderful Hospice has been to our family!  The old stereotypes of Hospice care are no longer true.  Back in the mid 80’s when Grandma was dying of ovarian cancer they provided her with pain medication and tried to keep her comfortable.  That’s good, but today they provide more.

The doctors and nurses work with the patient and family to ensure comfort and quality of life.  Nursing assistants will come out a couple of times a week to help with bathing.  Chaplains come over to provide spiritual support and a sympathetic ear.  Social workers help you find the resources you need while caring for your loved one.  Volunteers come on board to provide respite care so you can run errands or just take a break.

Hospice will provide durable medical equipment (eg: hospital beds, wheelchairs, oxygen concentrators, bedside commodes …) and disposable supplies (eg: adult briefs, some medications, special pillows to prevent bedsores …)

They spend the time necessary to help you learn how to provide needed care.

Many doctors are hesitant to bring up the concept of starting Hospice care.  This stems from the idea that by suggesting Hospice they are acknowledging that they have failed to find a cure.

There comes a time where a decision must be made; continue to seek treatments that aren’t effective anymore or make the most out of each day.  Hospice is all about making the most out of each day.

If you feel you are at this point (or your loved one feels this way), speak with your doctor.

Grandpa was on Hospice for almost a year.  Until the last two months of that time he was able to; visit with family, go out for a meal, attend church services, and do many other things he enjoyed.  During his time on Hospice we held a huge party for his 95th birthday at an historic venue.  The only concession we had to make for his declining health was to bring his lift recliner so he could sit and be comfortable.

When we had questions, either about Dad or Grandpa, we could call the nurse helpline 24/7.  If we needed a nurse in the middle of the night, one was available to come to help.

When they passed, Hospice was there to provide support and care for our family.

Once your loved one passes, Hospice continues to offer support for the family.  They offer bereavement counseling and support groups for any family member.

To find out more about Hospice care click here.