Fear of What To Say

I follow a blog called “Suddenly Mad”. The blogger is a woman with early onset Alzheimer’s. I’ve become attached to her through her blogging. She is one amazing lady. She never gives up trying. Never gives up doing. She is a fierceless warrior on Alzheimer’s disease even though she’s rapidly declining.

With all of her tenacity and pushing forward to keep her brain working however she can, she has come across previous co-workers, students and even friends (people she thought were her friends) who when they see her, they don’t acknowledge her. It’s as if she has some contagious disease. She doesn’t undertand why these people are turning their backs on her. It’s hurtful.

This morning I was reading something Max Lucado wrote. If you’re not familiar with Max Lucado, he is a Pastor in San Antonio, Texas and a renowned author.

This morning Max wrote about “The Touch of God”. One of the things he said described why people shy away from those with illness and other maladies. Here’s what he said:

But others of us tend to forget. Our hearts are good; it’s just that our memories are bad. We forget how significant one touch can be. We fear saying the wrong thing or using the wrong tone or acting the wrong way. So rather than do it incorrectly, we do nothing at all.

Do you see that? “We fear saying the wrong thing or using the wrong tone or acting the wrong way. So rather than do it incorrectly, we do nothing at all.”

I believe that is what’s been happening to my blogger friend. People are insecure about what to say to her.

If you are a caregiver, I’m sure you’ve seen this too. But instead of getting hurt or angry at these insecure people, speak up. Let them know there is no wrong way to talk to someone with dementia or Alzheimer’s. The important thing is to acknowledge them, smile, shake their hand and say something kind. Of course, I don’t think that’s hard to do, but that’s my personality. Other people might be so insecure they just can’t bring themselves to reach out and say a simple hello. If that’s the case, give them a little nudge and tell them it’s okay; the person with dementia won’t bite.

People with dementia and Alzheimer’s still want to be recognized even if they don’t show it. They are still “in there”, and having a friend or relative take the time to just stop by and see how they’re doing will more than likely put a smile on their face. If you think they won’t remember you, you might be wrong. It’s surprising what they remember. And even if they don’t remember you, so what? You have made their day.

I can only reinforce how important it is to stay present in your loved ones life. If you still have a hard time with this, imagine yourself in their shoes.

Here is the full story from Max Lucado if you would like to read it.

 

 

 

Advertisements

Being A Mom

I have to say, being a Mom is the most rewarding gift a woman can ever receive.

Holding your newborn in your arms and marveling over what a beautiful unique creation this child is. Nothing is better, in my opinion.

But what happens when you become your mother’s mother? Not exactly the same sentiments of holding your newborn in your arms, right? It doesn’t seem fair or right to have to become your mother’s mother. After all, we still need our mom!

I had those same feelings when the role reversal started with my mother. What a shock! And just how do you handle such a reversal? It was certainly more than I thought I could handle. Learning how to take care of someone with dementia or Alzheimer’s isn’t easy. Now throw into the mix that you have to become the parent! What??!

Yes, it’s inevitable that one day, if not already, you will become the parent and they will be like your child. However, don’t treat them like a child. Continue to show and give them respect; they deserve that much and more.

Sometimes I think if I just had one more day with my mother, I wouldn’t mind the role reversal if it meant I was able to spend time with her. I miss my mother terribly. What I don’t miss is the disease that took her away.

Thinking about this Mother’s Day I’m reflecting on the good/fun times I spent with my mom; making her laugh, watching her dance so uninhibited and enjoying every moment I had with her.

If you’re parents are still living, try and focus on the good times you have with them, even if it’s few and far between. Love on them as much as you can.

If your parents are deceased, recall the fondest memories and hold onto those. It’s worth remembering those special moments and it helps get you through another Mother’s Day without them.

Happy Mother’s Day, Mom! I’ll always love you ~

Never Underestimate The Power Of. . .

Never underestimate the power of one visit.

That flash of recognition;

The instant crinkle of eyes,

An immediate curving of the smile

Which cradles the one to whom it is offered.

 

Never underestimate the power of human connection.

Seeing a face you hold dear;

Being seen by someone who cares;

These are a morsel of life to

Someone who is starved for it.

 

Never underestimate the power of utter isolation.

Of sickness and disease

Of friends who have moved on

“Too busy” in their healthy lives

The isolation wears, and wears, and wears.”

                                           Author Unknown

When I first saw and read this poem it reminded me of so many people I knew in a memory care facility who had no family or had families but they never visited. I never understood why families would neglect their loved one(s). It would break my heart. I instantly adopted these people into my family, loving on them, hugging them, holding their hand and opening up a conversation with them. They seemed to relish in the attention and the physical touch I offered.

When someone has any kind of disease, be it a cognitive impairment or something else, they, too, crave and want to be loved and recognized that they are still a human being with feelings. Maybe they can’t carry on a conversation, but their eyes and their smiles convey their gratitude for being shown a level of respect and love towards them.

When the time came that my Mother wasn’t verbal anymore, she was still able to communicate with her eyes and her smile. Just like it says in the first part of the poem, “that flash of recognition”.  My recognizing and addressing her needs as I walked in was all that she needed in that moment. The smallest and kindest acts like taking her hands into my hands was the connection and the morsel of life she craved. And I craved the idea of extending that love to her.

If you have a loved one or someone very dear to you that’s not family, don’t ever let them feel isolated by your lack of visiting or calling. No one is too busy to offer love and kindness to those in need. And if there is a person with no family or friends, make an effort to show them they matter to you!

 

Blessed are the merciful, for they shall obtain mercy. Matthew 5:7

 

 

 

Selfless Love – Agape

February is most known as the month of love. Commercial ads are all about love, gifts for special people in your life, flowers, candy, cards professing love and more.

When I think about February, I don’t really think of it in the same commercial sort of way. For me, February may be portrayed the month of love, but shouldn’t every month be about love?

I’m thinking about caregivers. They are the ones who display selfless love – Agape.

What exactly is Agape? According to definition by ancient Greeks, Agape or Altruistic love, is when you give to others, you are displaying selfless or “altruistic” love.

Isn’t that what we caregivers do? We are selfless, altruistic. Have you ever met a caregiver that wasn’t selfless? I haven’t, but that isn’t to say there may be people in caregiving roles who are selfish instead of selfless.

When you’re a caregiver there is Agape love all of the time because when you care for someone, be it a relative or someone else, you must have selfless love, Agape. Otherwise, you can become bitter and resentful.

Caregiving is about being selfless. You give up so much to take care of the person you love and you do that because of the love you have for them. Is it easy? Never. Is it always hard? Sometimes. Yet we may have moments in the caregiving role where there’s an easy day, less challenging, things seemed to be going smoothly.


Love has a powerful effect on human behavior

Love – Agape, should be 365 days a year! When you have this selfless love you, yourself, will be transformed inwardly in ways you never thought possible. I say this from personal experience. I found a greater deeper love while caregiving for my mother. It wasn’t the same as a daughter loving her mother, it was much deeper.

This scripture verse sums it up:

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hope, always perseveres.” 1 Corinthians 13:4-7

AGAPE

Caregiver Stress

According to Merriam-Webster the definition of stress is:

A physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation

Being in a caregiving role, no matter what kind of caregiving you provide, is stressful. If you are a caregiver you have experienced more stress in your life than you ever imagined possible.

Some caregivers experience feelings of abandonment from family members and occasionally by friends. The stress related to these feelings can lead to the caregiver becoming ill themselves because they feel alone and don’t have any idea where to turn or who to turn to.

It’s a fact that when a person becomes extremely stressed they can become depressed, develop chronic pain, high blood pressure, heart disease and various viruses due to a suppressed immune system, and this is just naming a few of the many health problems caregivers can experience.

When stress takes over it also causes impatience which leads to anger. If you, the caregiver, are experiencing anger towards the person you’re caring for, it’s time to step back and re-evaluate your situation.  Walk yourself through these questions:

1 – What exactly is making me angry?

2 – How am I handling my anger?

3 – Is there another way to release my anger?

Whatever you do, don’t suppress your anger, that only causes more stress. Instead, find a support group or a counselor specifically trained in helping caregivers. Here are a few places to check out: National Caregivers LibraryAlzheimer’s Association, and Help Guide.

If your situation allows, take 15 minutes and go for a walk. Just being outside and getting some fresh air can clear the senses and lessen your stress.

Remember, taking care of yourself is the only way you can provide the caregiving your loved one needs.

A New Year and Resolutions

Recently I’ve been giving a lot of thought on New Year Resolutions. What’s the real purpose of making a resolution at the beginning of a new year? How many people actually stick to their resolutions? From what I’ve experienced personally, and what I’ve seen other people do, is break those well intended promises after a couple of months. So what’s the point?

My Pastor talked about this in our service this morning. Everyone has intentions but most people fall short after a few months. It seems we all set a goal but have no plan on how to reach that goal. That would be like planning a trip to an unfamiliar place without a roadmap (or today, our GPS) showing us the way.

I find that people starting out in a caregiver role have similar challenges. What I mean is, all of a sudden you might find yourself taking on the responsibility of a caregiver (the goal). At first you might think, “I’ve got this, I know how to take care of a sick person, I’ve done it many times before.” You have good intentions, but no idea where to begin or how to navigate the system of what needs to be done.

Where do you begin? Do you need a plan? Why? How hard can it be?

If you’ve been a caregiver you know what I’m talking about. If you’re new to being a caregiver, you’re just beginning to scratch the surface of what’s involved.

Caregiving is more than taking care of a sick person.

To answer the above questions let’s start by saying, this might be one of the most challenging goals you’ve ever set so, yes, you need a plan.

  • Make a list of questions for your doctor(s) and/or family members who might be involved
  • Find the right people to guide you through the legal and healthcare system
  • Determine if your loved one will live with you or will you be living with them
  • Find a facility (if needed) that is the right fit for your loved one
  • Set up financial aid, or determine if all costs will be private pay or covered by insurance
  • If you have a full time job, will you be able to keep it and be a caregiver at the same time

Know right from the beginning you cannot do this alone, it takes a village. I know because I’ve been there.

Don’t be prideful, ask people for help. You don’t have super powers and should you try to do this alone, you will quickly discover how easy it is to burn out. Burn out causes impatience, quick tempers, depression, anger, resentment and even blame.

Caregiving is one of the hardest jobs I’ve ever had, but it was also one of the most rewarding. I’m not saying doing all the items listed above is going to make caregiving a breeze, but it will be your GPS/roadmap for the journey. Stay focused.

If the new year rings in with the call of becoming a Caregiver, you have a place to start putting your plan in motion.

So do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Isaiah 41:10

 

 

 

I Simply Remember My Favorite Things…

“I simply remember my favorite things”… does this trigger a memory for you? It’s one of the famous songs from The Sound of Music ~ Raindrops On Roses.

If it’s been awhile since you’ve heard this song, here are the lyrics. After you’ve read or even listened to this song, think deeply about what is being conveyed; then I’ll give my thoughts.

Raindrops on roses
And whiskers on kittens
Bright copper kettles and warm woolen mittens
Brown paper packages tied up with strings
These are a few of my favorite things
Cream-colored ponies and crisp apple strudels
Doorbells and sleigh bells
And schnitzel with noodles
Wild geese that fly with the moon on their wings
These are a few of my favorite things
Girls in white dresses with blue satin sashes
Snowflakes that stay on my nose and eyelashes
Silver-white winters that melt into springs
These are a few of my favorite things
When the dog bites
When the bee stings
When I’m feeling sad
I simply remember my favorite things
And then I don’t feel so bad
Songwriters: Oscar Hammerstein / Richard Rodgers
My Favorite Things lyrics © Concord Music Publishing LLC
What I love about this song is the simplicity and warmth it conveys.
As a Caregiver there are times you’d like to escape reality for a little while and slip into a little bit of fantasy world just to get through the day or the week.
How many times have you felt the “bite” from a loved one? It can feel like a “bee sting” too, can’t it? So what to do? There’s no sense in fighting back or getting hurt feelings. Remove yourself from the situation and “remember some of your favorite things”.
What are those favorite things? Anything that’s brought you joy and happiness over the years. It could be when you became a parent and held your baby for the first time, or became a grandparent for the first time. Maybe it’s when you were praised for something you accomplished, or something more simple like snowflakes on your nose and eyelashes. Whatever it was that brought a smile to your face, think about those times.
Don’t we try to do that with our loved ones too? We play music that’s familiar to them, we dance with them, we bring our pets for them to love on, we take them for a walk in the garden. These are just a few ways we work at getting them to remember their favorite things.
Let this holiday season be filled with beautiful memories of yours and your loved ones favorite things. . .then you won’t feel so bad.

MERRY CHRISTMAS!

Being Thankful

Thanksgiving is three days away. What exactly are you being thankful for? Is it your family? Friends? Work? Financial stability? Love? What???

Thanksgiving for me is truly a very personal experience. I’m thankful for so much. . .

  • Waking up each morning
  • Good health
  • My children
  • My grandchildren
  • My dear friends
  • My church
  • My faith
  • My God-given gifts
  • My love for The Lord
  • The blessings I receive when least expected
  • A kind word from a stranger

These are just some things I’m thankful and grateful for, there’s plenty more!

I would like for all the Caregivers out there to sit in a quiet spot and think about what you are thankful for. You might be thinking, “There’s not much to be thankful for because I’m too tired and worn out to even consider thankfulness.” Just trust me on this one.

Sit in an area where you feel the most peaceful. It doesn’t have to be at your home, it could be anywhere you feel “peace”. Maybe it’s in a garden, on a hike, at the park, or just sitting quietly in your car. It doesn’t matter, just find that “place”.

As you sit, think about what has brought joy into your life; past and present. Meditate on those joyful times. You can even journal about these special moments. It can start as far back as when you were a child. There’s no rules on how to do this. Just do it!

After you’ve gone through a memory inventory, jot down some thoughts you might have on the experience. If you feel the need to share it with someone, then do so. Otherwise, it’s between you and God.

We live in a crazy busy hectic world. Carving out some “quiet” time, especially for caregivers, is what keeps us able to do what we do best!

Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. Colossians 3:15

 

National Caregivers Month

November 7-13 is National Caregivers Month. 

This is a time for all caregivers to explore the treasury of books available through www.AlzAuthors.com.

This organization of creative writers has some of the best information available through their own journeys.  Some of the books are fictional yet very compassionate and on-point regarding caregiving. There is something for everyone.

As the holidays approach caregiving can become much more anxiety driven due to all the hustling and bustling associated with holidays. Take some time for yourself and read some of these heartwarming and loving stories. It will help you, the reader, understand you’re not in this alone and will provide some much needed peace along the way.

 

 

What’s Wrong With Grandpa?

“Mom, why does grandpa act so weird? Why doesn’t he know who I am? We used to play games together and now he won’t even talk to me.”

If you have young children, tweens or teens, you may have been asked this question. How did you respond? Did you ever think about being asked this question and how you would handle it?

As Caregivers to our parents, we owe an explanation to our children no matter what their age. It’s hard enough to understand ourselves what’s going on and why this is happening; imagine a young person trying to make sense of this!

Being honest and open with kids of all ages is first and foremost. Never try to skirt around the subject. Never tell them you don’t have time to talk about it. When is the right time? Kids don’t want to be brushed off, especially when it comes to someone they love. You don’t like it if a doctor brushes off your questions, right? So be upfront and honest with your kids.

You have ways of communicating to children and young people about what’s going on with their grandparent(s).

One way is with books you can read together on the subject of dementia. AlzAuthors is a great resource for these books. Reading about brain changes with children can help you get the message across in a way you’re not able to express, or feel unsure how to communicate in the right way.

It doesn’t matter how young or how old your kids are, when it comes to wanting to know why their grandparents are not the “same” you must be ready to explain. It’s never easy to sit down with the family and talk about what’s happening with your loved ones, but it is something that has to be dealt with.

If you feel you might upset the kids by talking about what’s going on, just think how much more upset they will be if you don’t tell them. They are part of your family and there should be no shame or secrets when it comes to explaining brain changes. Kids are much more resilient than you may give credit.

Once your children understand what’s happening to their grandparent(s) you will be pleasantly surprised at the level of love and care they want to share with them. Kids have a way of dealing with issues that we adults seemed to have a hard time with. Because children are much more uninhibited about such things, they’re a natural for showing and giving compassion. The grandparent(s) will gravitate toward that compassion in ways you cannot imagine.

Never underestimate a young person’s capacity to understand what’s happening to the people they love. 

Being open and honest with your kids allows them to see you are able to be transparent with them and in return, they can be the same way with you. It’s all about them trusting you knowing how much you love and care about their feelings as well.

If you’ve been procrastinating having this conversation, NOW is the time to sit down and tell them what’s going on.

Recite this verse to yourself:

“In quietness and trust is my strength.” Isaiah 30:15