Focus

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Where is the focus of a caregiver? Where should it be?

You might be thinking, “That’s a crazy question. Of course the focus is on my loved one.”

It’s not so crazy of a question if you really give it some thought.

Yes, part of the focus is on the person you’re caring for. But shouldn’t the focus also be on YOU?

Think about it:

  • Are you staying healthy?
  • Are you getting enough sleep
  • Are you taking a day for yourself (ever)?
  • Is your day filled with fear, negativity, resentment and all the “what if’s”?

If you answered “no” to the first three and “yes” to the last point,  then you need to start doing some focusing on you.

In my opinion, caregivers have one of the hardest, unrewarding and challenging job on the planet! There’s (usually) no income, no incentives, no bonuses and no perks that typical jobs sometimes offer. So what else is there to focus on, right?

Focus on the gift you were given. What giftThere’s a gift involved? As a matter of fact, there is. You, have been given the privilege to care for someone you love very much. Someone who has been a huge influence in your life. Someone who has made a difference in your life in the past, or maybe the present. Someone you love so much you wouldn’t dare think of anyone besides you to take care of them. And you know what? You do an amazing job as a caregiver. Yes, go right ahead and pat yourself on the back. You deserve some recognition for all that you have done and are doing right at this very time.

I find it somewhat fitting to quote part of a song by Donna Summers from 1983:

“_____years have come and gone

And she’s seen a lot of tears of the ones who come in.

They really seem to need her there.

It’s a sacrifcie working day to day.

For little money just tips for pay.

But it’s worth it all just to hear them say that they care.”

I left the number of years blank on purpose. The song says 28 years. For me, I can insert 19 years. You can insert your own time to make it fit for you. I also left in the part about the money because some of you might be getting paid even if it’s a small amount.

The point is, everyone works hard at being a caregiver day in and day out. It’s truly a sacrifice, but you are needed! We love and care about those in our charge and we would go to the end of the earth to do what is best for them. So why not do the same for yourself?

Try to focus a little more on yourself so you can be all you need to be as a Caregiver.

Is It Time To Be Tested?

Is it time? I wonder how  many people are asking themselves if their loved one needs to be tested for memory cognition? It’s not an easy decision.

If you’re married to the person who has memory problems it might be like walking on eggshells. After all, you don’t want to assume anything and you certainly don’t want that person to take offense at the suggestion. So what do you do?

One way might be to seek out professional counsel. This is actually a smart choice since it not only helps broach the subject with your loved one, it also helps you to understand some of the ins and outs regarding memory loss. This isn’t a skill we learned in school (unless of course, you went to school specifically for this field) so finding someone who is an expert in memory care seems like the common sense route to take.

In the case of the person being a parent, that too, can be a little tricky. While you mean well, your parent might take offense to the fact that you would even entertain they have memory problems. It’s just a part of aging, right? Well, maybe. But if the short term memory has gotten them lost while driving, leaving the house with the stove on, or forgetting to take medications, it just might be time for that testing.

Again, its all about how to approach the subject, your tone of voice and showing your concern in a loving way. No one wants to be “told” they have a memory problem. No one will like you being bossy and taking the dictator approach.

Patience. Empathy. Tact. Love. These are important attributes when talking to someone who might have memory impairment.

Take time to think about how you might feel if someone was talking to you about having memory problems. How would you react? Would you be offended?  Would you be hurt? Would you be defensive? Maybe you would be grateful because someone else cares enough to want to help you find out what’s causing the problem.

Just because someone has memory problems doesn’t mean they have Alzheimer’s disease. There’s so much more to this. That’s why cognitive testing is so important.

If the person you’re concerned about has a history of head injuries this can be associated with memory loss. We’ve seen in the news about athletes who have had repetitive concussions and how it has affected them later on in life.

When you or your loved one notices memory problems beginning, it’s better to check it out sooner than later. Be their partner in this quest, not their enemy.

Dementia is the umbrella for these memory diseases:

  • Alzheimer’s
  • Vascular
  • Lewy Bodies
  • Frontal Temporal
  • Huntington Disease
  • Creutzfeldt-Jakob Disease
  • Parkinson’s

Take a moment and go to the Alzheimer’s Association and read about all the different kinds of dementia and educate yourself.

The more you know the less difficult it will be to talk to your loved one about memory problems.

Caregiver/Advocate

Taking on the role of caregiving requires wearing many different hats.

First, and foremost, you want to make sure your loved one is safe at all times whether its in their home or your home, a memory care facility or a skilled nursing facility. We want the best for our loved ones.

Second, we want to be able to have complete trust in any outside help such as sitters, home healthcare staff, certified nursing assistants, nurses and, yes, even doctors.

If your loved one is in hospice care whether it’s palliative or hospice there is usually an appointed person as their advocate. If they are solely in your care, you become their advocate. . .for everything.

I learned about being an advocate early-on with my Mother. From the time of becoming her Durable Power of Attorney to the time of hiring sitters 24/7.

Throughout the process of my caregiving I was constantly advocating for what was best and right for my Mother. I’ll admit, it’s not an easy task caregiving or advocating. Having to do both simultaneously can be draining and daunting. All I can recommend is to do your homework and talk to those in the healthcare field. Don’t hesitate to ask questions (nothing is too insignificant) of everyone, including the doctor in charge. Just because someone has the title of “doctor” or “nurse” doesn’t mean you can’t ask questions. This is your loved one you’re caring and advocating for. And PLEASE do not ever think your questions are stupid. There ARE NO stupid questions.

I understand that some people are not of the nature to buck the system so they do whatever they’re told. However, there are exceptions where a suggestion might not be in the best interest of your loved one. After all, who knows them as well as you do? So speak up and give your views and opinions.

A good example I have to share is a time when my mother’s agitation was escalating and her doctor kept adding medications to her regime all the while trying to impress upon me how “just a small dose” would take the edge off. I was trusting this doctor because, well, she was the doctor!  I was adamant I didn’t want her over-medicated and the doctor assured me that would not happen. But, in fact, it did happen. She had to be admitted to a psyche ward to ween her off all medications and start fresh with what she really needed without having numerous drugs to settle her down. I can’t tell you the guilt I felt because I was her advocate, how did I let this happen?

There it is, that word guilt! No escaping that little culprit of a word when you’re a caregiver/advocate.

I trusted the doctor, but what I didn’t do was put my foot down and say “no more”. Even the psychriatrist was astounded by the number of drugs she was on just for agitation. After one week in the psyche ward, my mother was more alert and smiling and being herself. The medications changed her personality and made her more irritable rather than calm.

What I’m saying to all Caregivers/Advocates is be on your toes at all times. Ask “why” something is recommended or prescribed. Read up on side effects especially if a person has any kind of dementia. Some medications for agitation are not recommended for dementia patients and can cause serious problems, even death.

The other point I want to make here is never let a healthcare professional dismiss your concerns about your loved one because of “old age”. I can’t tell you how many times I heard that from various healthcare professionals. We’re all going to age, but that doesn’t mean to write off the elderly because they consider the health problem to being age related. There are many avenues to take in helping our aging population whether they have dementia or some other health problems. Step up and have the courage it takes to be the caregiver/advocate your loved one is counting on.

 

Uniquely You

I’ve been a little off my game lately and not doing the writing I should have. Then, a lovely lady I know, reminded me the other day why I’m writing this blog: To help Caregivers. Her words were encouraging to me. Imagine that! I’m supposed to be encouraging others, and little did I realize, I was in need of some encouragement as well. Funny how life is, huh? We all need a little nudge now and then.

I have been working with my copy editor on my book (my memoir as a Caregiver) and one of the chapters I was reviewing brought up a time my mother was going through a transition in her dementia. The “not so very nice” side of her disease was beginning to come out. For those of you who are caregivers to someone with dementia, you know what I’m talking about.

You try your best to do what is right and pleasing for your loved one, only they don’t comprehend that and they lash out—at you. When that first happened to me I didn’t know how to act or respond. My feelings were so hurt. I wondered why my own mother would be doing this to me? I was only trying to help her.

I learned the hard way that what I thought was helping or pleasing my mother was not necessarily how she perceived it. I had to find another approach that worked for both of us. Everyone has to find what works best between you and who you’re caring for because all personalities are not created equal.

One time my mother accused me of “trying to put her away” because her doctor recommended a skilled nursing facility. Fortunately for her, and me, it turned out she did not need that level of care at that particular time.

It wasn’t the last time my mother would lash out at me; there were numerous other times. Don’t be surprised if your loved one accuses you of something that never happened. It might be as simple as them saying you never told them something (and you just did) to accusing you of throwing away something they felt was of value to them. Whatever happens between you and them, do not get into a confrontation by trying to defend yourself because you won’t win. Just empathize and say you’re sorry.

Many times throughout the years of my cargiving I felt like my heart was the target when hurtful things were said; like an arrow piercing through it. After many years, I thought I knew how to handle such outbursts. I became a little over confident and my vulneralbility must have shown through because I was caught off guard by hurtful words once again.

Don’t become discouraged if you have experienced any of the above. It’s easy to feel down and defeated. The energy level you need isn’t worth giving up on finding the right approach to dealing with such situations. My solution was always prayer; it never failed me.

Just today I read an excerpt from Visual Theology by Tim Challies and Josh Byers that explained we all have a vocation in life. Some people have several vocations: moms/teacher, dads/accountant, teachers/mentor, pastors/husband, garbage collectors/volunteer, doctors/little league coach, caregivers/mom/daughter/son/husband/wife and more.

 

Only let each person lead the life that the Lord has assigned to him, and to which God has called him. — 1 Corinthians 7:17
This instruction implies that God has made each of us uniquely and assigned to us unique lives with unique roles. Our responsibility before God is to understand the gifts, the skills, and the passions He has given us and to use those in fitting ways — in ways that do good to others and, in turn, bring glory to God.   Excerpted from Visual Theology.

What a beautiful and eloquent way of stating that you and I were uniquely assigned the role as caregiver for our loved one! I don’t know about you, but for me that is the highest compliment a human being can be given. Once you realize this unique gift you’ve been given, you are better able to meet the challenges along your journey as a caregiver. I’m not saying it will be easy, but it is comforting to know who has your back!

 

 

 

Calling All Caregivers!

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How do I describe the roll of a Caregiver?

  • Daunting
  • Exhausting
  • Tiresome
  • Lonely
  • Fearful
  • Uncertain
  • Questionable
  • Worrisome

These adjectives all come across as negatives, yet they are real concerns for the Caregiver.

Are there any positives as a Caregiver?

  • Love
  • Faith
  • Advocate
  • Helper
  • Teacher
  • Confidante
  • Playmate
  • Purpose
  • Knowledge
  • Humorous
  • Inspiring
  • Caring
  • Blessed

While you may have more ideas of what describes a Caregiver’s roll, for me, the positives out weigh the negatives. Of course, there were many times I didn’t feel like there were any positives as a caregiver. However, looking back and assessing all those years of caregiving, I can clearly see so many positive times.

Isn’t it common when you’re in the midst of the storm all you see are the black clouds and terrential downpours? Eventually the sun does come out and when it does there’s a fresh new sense; the air is clearer, we can take a deep breath without feeling suffocated.

What is it you do to clear the fog and begin a fresh new day? Here are some things that worked for me:

  • Prayer/meditation
  • Journaling
  • Talking to other caregivers
  • Taking a walk or hike
  • Listening to music I love
  • Reading a fiction novel
  • Dancing
  • Spending time with a close friend(s)

The above activities are what helped get me through as a caregiver and here’s why it did:

  • Prayer was monumental for me and helped me through every single situation (really!).
  • Journaling was the most therapeutic exercise ever. I highly recommend trying this.
  • Talking to others who were in the same position as I was proved extremely helpful in so many ways.
  • Walking/hiking in the woods or along a quiet road always gave me a sense of calm. Nature has a way of reaching deep into the soul to calm us.
  • Listening to music of different genres that I love helped me think of different times in my life before becoming a caregiver.
  • Reading a fictional novel let me escape for a little while from “real” life; no thinking needed.
  • Dancing was, and still is, a form of expression releasing endorphins to stimulate and help me feel good and stay healthy.
  • Friends, close friends, are always there for you, no questions asked, no judging, just good listeners.

In past posts I’ve tried to express the importance of taking care of YOU, the Caregiver, in order to function every day, month or year. Whatever your idea is of finding a release to keep you moving and functioning, make sure you follow through with it. There’s no guilt or shame in taking care of yourself. You will become a stronger Caregiver for it.

A favorite scripture of mine in Isaiah was reassuring. I hope to encourage you with this verse as well.