Let’s Be Kind to Our Fellow Caregivers (and Ourselves)

Online support groups can be a life-saver for caregivers. It is important for us to know others are going through similar situations so we don’t feel alone or so we can learn something new about caring for our loved one that others have tried and that works. (I learned quite a bit about incontinence care and the importance of maintaining a person’s dignity from my soul sister, Kathy Lowrey, who cared for her husband when he had Lewy Body Dementia.)

Trish, Robert and Richard (2014)

I am involved in several online caregiver support groups. Sometimes I actively participate and sometimes I look at the comments and information posted but scroll past without commenting. Most of the time I am heartened by the love and care people show one another. 

Occasionally, though, I cringe when scrolling through comments made to people reaching out for help. The majority of the time people are kind but sometimes people are judgmental and harsh and impatient toward other caregivers. People in similar situations!

Every caregiving situation is different with different people doing their best caring for loved ones in a variety of situations. Caregivers can be in different stages of caregiving, can have other life situations that make their situation difficult and can have different emotional strength and attitudes at this particular time in their lives.

It is important to remember that each of us is only who we are at this moment in time in this set of circumstances based on our past experiences and our hopes for the future. Everyone is different and it does not help to make someone feel guilty because they are not handling a situation as well as we think they should.

Caregivers can help themselves and others keeping these reminders in mind.

• Listen instead of comparing yourself to other caregivers. Please. I have never met a caregiver who thinks their situation is the worst. Caregivers may think they have it difficult but most think someone has it worse than them – no matter the situation. It is not helpful to minimize our caregiving situation (or someone else's) because another caregiver’s situation seems worse (or better) than our own. It doesn’t matter. Each caregiving situation is different yet we all go through the same emotions, struggles and heart-wrenching decisions at some point.

• Be supportive instead of judging other caregivers. Robert goes to a Day Program and he sleeps a lot. My husband is my co-caregiver and gives me a tremendous amount of help with Robert. He has lived on his own, in a Skilled Nursing Facility, in an Assisted Living Facility, was living in a Residential Home for the Disabled. Each of these situations is difficult in its own way. I know other caregivers who made the decision to permanently place their loved one in a facility and they are either relieved, devastated or a little of both. There are caregivers who work full-time and have to leave their loved one at home with the knowledge they could have a devastating seizure or fall at any minute. These caregivers are worried sick enough and need support, not judgment or a declaration that they are not “real” caregivers because their loved one lives elsewhere or is not cared for by them 24/7.

• Educate instead of thinking less of other caregivers. Here’s my confession: I was unsure how to put a brief on my 220 lb incontinent, adult brother. I know how to put a diaper on a baby but a standing, wobbly adult?  I struggled. At first I needed an extra hand or two to get it on snuggly and, I actually wasn’t even sure at first if the tabs should go in the front or back! (The tabs go in the back and then tape to the front of the brief.) Help new caregivers learn the basics without making them regret asking the questions.

• Recognize when we want to vent instead of problem solving. Sometimes we are losing our minds when caregiving and have no one to talk to. Let us rant and rave and tell you how tired and awful (and then guilty) we feel without telling us it is time to put our loved one in a home or that we need a vacation (especially since respite is so difficult to get sometimes).

• Let’s laugh together and not always be so serious. Caregiving is full of serious health issues, impossible medical decisions and extreme concentration so mistakes are not made. But we can’t be serious all the time! Caregivers know (but may not admit) that there can be some very funny caregiving situations. We have to laugh! Whether we laugh together or alone let’s at least recognize the absurdity of some of our caregiving situations! Some of the best friends I made while caregiving are ones I could laugh with about our crazy situations.  

Everyone knows caregivers need more support from non-caregivers, from the government, from our employers and from our families but we also need support, love and kindness from each other.

We can all use more kindness in our world so let’s keep this in mind when dealing with each other. Let’s also remind ourselves to be kind not only to one another but to ourselves.

We can do that for each other. 

Appreciating the Goodness in People

Maybe it’s because there was yet another school shooting.

Maybe it’s because two sheriff’s deputies in our area were senselessly gunned down just a few days ago.

It is the small acts of
kindness that leave a mark
on our heart

Maybe it’s because I am sick of all the negative news about all of it: shootings, Ebola, this politician attacking that politician, terrorists – YUCK! I cannot even list all the negative things without feeling sick to my stomach.

In spite of all of this negativity in the world, I have to remind myself there are good people.  Lots of them. Yes, there are heroes who accomplish newsworthy feats but there are also people who just go about their day being kind in small ways. Or who just do a little bit extra at their job and don’t realize how much they help someone else.

They don’t make the news.  They don’t have a viral video to document what they have done. They do not get invited to appear on a national morning show. Sometimes, they aren’t thanked or are even aware of what they have done.

It doesn’t matter.  These are the people who count. These are the ones who remind us there is good in the world and we haven’t all gone mad. These are the people I want to thank because these are the ones who will teach their children how to be kind; show others by example that goodness in people exist.

I realize this is not an original thought but when a string of horrifying events occur, it is a matter of self-preservation to remind myself of the goodness in the world.

Appreciation goes to . . .

• Rodney who delivers Robert’s monthly incontinent supplies. He wanted to be sure we got the supplies timely so made an extra effort to deliver them one evening. He called to be sure we were home then thoughtfully parked halfway down the court and whispered as he came to the house, pushing a dolly full of briefs, gloves and bed pads. He explained, “I didn’t want to disturb the boys.” Oz and Taz were none the wiser!

• Julie, who is Robert’s epileptologist’s nurse practitioner.  Heck, Robert’s whole neurology team. They are responsive to my emails and phone calls; they genuinely listen to my concerns, questions and hesitation about any new medications. They graciously take and review my seemingly endless logs of seizures and vitals and “other symptoms.

• The barista who remembers my drink (which says far too much about my lack of imagination and frequency of coffee runs);

• Tanya from Robert’s Day Program who took time to tell me how much she enjoys having Robert at her program. She gushed how much she appreciates Robert’s positive attitude and his willingness to cheer up others having a hard day. Do I appreciate her because she told me good things? Absolutely not (because she’s told me when Robert was being difficult, too).  I appreciate the communication and her care for not only Robert but all of her clients. 

• Salita, the kind hair stylist at JC Penney.  It is a mutual admiration session when Robert goes in for his haircut and mustache trim.  There are hugs and laughter and often, there are gifts. I cannot explain their connection but it is wonderful to see. 

• Laine, a Facebook friend who lifts my spirits with her encouraging posts and knowledge about nutrition and health. We are on opposite sides of the political spectrum but I can set that aside and be grateful for the strong, supportive woman I know her to be. 

• Pegi, Kathy, Denise, Casandra, Elissa, Lisa, Cathy, GJ, Jane, Teresa and - well I am fortunate to have so many dear friends that are too many to mention. We may have met through caregiving circumstances but I have grown to love each and every one of them because of their extreme kindness and support toward each other and us and many, many others. 

• Carol, who has a special fondness for Robert and shows it every time she visits with him. They share a deep spiritual connection which warms my heart to see;

• Joelle, who is not only my best friend but who works tirelessly as a foster mom to numerous dogs while also being mom to two of her own dogs (one a “foster fail.”).  

• Richard, who may be my husband (so I might be a bit biased) but he has shown what a true friend he is by creating his own team for a Walk for Alzheimer’s to benefit our friend, Steve. Richard will be walking alone but has raised, at last count, $500 for the Alzheimer’s Organization.   

• Rachel, who is a terrific friend to many (both human and of the animal variety), makes me laugh more than what should be legal and who gently reminds me (as only a daughter can) to care for myself as well as I care for others.

As I write this I realize how much goodness there is in my world and how fortunate I am to be surrounded by such beautiful people. I could go on and on because there are so many little things people do that leave their mark on my heart. Perhaps we need to hold those moments especially close when feeling overwhelmed by the bad news of the day (or week or month).

I would love if you added to my modest list in the comments below. I would love to read about the kindness you have encountered!

Kindness – Every Little Bit Helps

It is sometimes difficult to believe in the goodness of the human race when there is such evil, violence and despicable acts splashed across most news sites.

A fond memory of mom

It can be difficult to see the goodness even for a Pollyanna like me, especially if I’m feeling under the weather – which I am due to a dental implant gone wrong.  As my daughter succinctly pointed out, I have become one of “those” stories – the horror stories people repeat to each other about medical procedures gone as wrong as you can imagine.

Here I am on pain medication and antibiotics with a raging infection in my mouth, swelling in my jaw and on a forced diet because I can only open my mouth wide enough to fit in the tiniest bits of a peanut butter and jelly sandwich (on the softest bread possible and absolutely no crust because even that is hard to chew).   

I guess pizza is a bad idea for dinner tonight.

I’m trying to get some work done from home today but it’s difficult to avoid the news.  The situation in Ohio is nothing short of horrific which is one reason we want to crown a hero.  People want to balance out the evil – let’s see some good!  Yay!  The women were saved by someone not afraid to get involved and not willing to ignore screaming from the neighbor’s house.  We have a hero! 

Then, for some odd reason, we want to dig up all the dirt possible on this man.    

Guess what?  People are not perfect.  People make mistakes – big mistakes (and, believe me, spousal abuse is a big mistake).  These mistakes cannot define a person, however.  These are pieces of a person’s life – some good, some really awful. 

I really don’t know anything about Charles Ramsey other than he, along with Angel Cordero, is credited with helping Amanda Berry escape her tormentor.  That is kindness.  Their efforts go a long way toward restoring our faith in the goodness of humans.  Maybe it even helps him make peace with his past mistakes. 

It’s such a simple concept: Be kind.  Spread kindness.  Do something kind for someone.  It doesn’t have to be huge because the ripples of kindness go beyond what we can even imagine. 

I believe people want to be kind.  Everyone wants to make a difference – to have an impact and to find a purpose to being here.  When my mom was dying of liver cancer, she struggled to know what her purpose had been.  She wasn’t famous or even outgoing but she was kind.  While she wondered what her purpose was, she tipped the cashier at the McDonald’s drive-thru.   She packed a bag full of groceries out of her cupboards when her daughter was struggling as a single mom.  She even threw in a box of dryer sheets because her daughter thought it was too extravagant to spend $3.50 on dryer sheets when every penny counted.

Throughout her life, Mom had also been depressed, suicidal and drank too much boxed wine.

None of these pieces of her solely defined her.  She was made up of kindness and a complicated life and poor coping skills.  In the end, it was her kindness that won out. 

We visited her favorite beach before she died and she made friends with a small boy who decided Mom was the one person on the entire beach he wanted to share his starfish with.  She spent time with him and made that moment on the beach memorable for me, watching my mom exude kindness.   Who knows how that kindness rippled through the boy’s life (or mine)?

 These small bits of kindness add up and make it easier to believe in the goodness of people. 

Let’s find the goodness and kindness in ourselves and share it with the world.  Even in bits as small as my peanut butter and jelly sandwich. 

Happy Mother’s Day, mom!  Your kindness is missed. 

Thoughts on Aurora

I don’t know that I can contribute much on the tragedy that happened in Aurora, Colorado.  I just know I can’t stop thinking about it. 

One man, clearly not in his right mind, changed the lives of the people in that theater (and beyond) forever.  Even if someone was lucky enough not to be injured, the sounds, the fear, the horror of that night is imprinted on their soul.

How many of us have excitedly gone to a midnight showing of a movie we have longed to see?  Planning with our loved ones and our friends to see whatever movie has captured our attention at the moment. Standing in line with others just as excited (when reasonable people should be in bed), buying over-priced, artery-clogging popcorn (have you ever put that butter in a cup by itself – gross!) and picking just the right seat (or taking what we can get if we’re a little late).

Not to intentionally date myself but I have thoroughly enjoyed my share of midnight showings of The Rocky Horror Picture Show (um, yeah, I was a toddler).  

How many have let their teenagers go to the theater in the middle of the night because they and a group of their friends wanted to see the latest Harry Potter or Twilight movie? 

It’s such a normal thing to do.  

It’s innocent.

It should be safe.

It rattles our foundation when something as routine as seeing a movie is suddenly a risk. 

I’m pretty risk adverse.  I don’t jump out of airplanes.  I don’t go mountain climbing.  I buckle my seat belt whenever I am in a car and I drive the speed limit (well, most of the time). 

The riskiest thing I do is eat popcorn at the movies.

There’s not much I can think to do to make the people affected by this senseless tragedy feel better but I want to do something. 

All I can suggest we each do something nice for someone – a stranger, family member, loved one, co-worker – anyone.  Maybe our small acts of kindness can snowball so they will help counteract the violence and tragedy in the world.

It won’t help the people of Aurora directly but I hope these acts of kindness reach them at least indirectly and they know how much the world is keeping them in their thoughts. 

One man who had lost his humanity should not keep us from ours.

I realize this is naïve but couldn’t the world use a little bit more innocence?