Mother’s Day ican be bitter-sweet if your mom’s no longer here.
It’s so hard to say the word, “dead,” and in many ways, our loved ones live on–in thoughts, in stories, in how they continue to impact our lives.
For many, Mother’s Day can be so painful that we do all we can to avoid it. That avoidance is part of grief, and it’s necessary for a while. Grief is like a good soldier, but there comes a time when you say “Thank you, you’ve served me well,” and you let that soldier be released from duty.
After my mother died from Alzheimer’s and Parkinson’s, I felt incredibly lost. I had been her daughter and her caregiver for so long and had invested so much time, energy, and heart into that role. After months, if not years of longing for my freedom, of griping and complaining, all of it felt so trivial in comparison to my mother no longer being in my life.
I knew I had to get my bearings. I asked myself over and over, ”Who am I? What was I doing before caregiving? Do I go back to that–or move onto something else? I’m now the matriarch of the family…does that mean I’m…old?: I’m now the Mama figure, the one everyone turns to, the one who holds the family history.
Feeling lost lasted awhile, but it didn’t last forever. I began to move beyond my grief. I began to grow hungry for life, for a routine, for something to sink my mind into. I returned to college. Someone else telling me what to do seemed to work. I started writing again.
An Excerpt from Mothering Mother:
I put Mother’s wallet and glasses in the top drawer of my dresser today. They’ve been sitting on top of it since she died four months ago. Mother kept Daddy’s wallet, pocketknife, comb, and a small Bible in a heart-shaped cedar box he gave her the second time they went on a date in 1925. Something about these wallets left intact creates a sort of bubble holding time and memory in perfect stillness. Their licenses, credit cards, photos and slips of paper remind me that they had everyday lives.
This makes me question this whole “here, not here” mindset we have. Giving a friend a bit of humorous advice prefaced with “as my Mama always said…” is a way of keeping her here. Will there always be a bitter side of sweet? Will death and dying burn away, so that I don’t have to run straight into them before retrieving a remembrance?
I hear Mother all the time and quote her daily. My friend Debbie’s teenage daughter asked her mother, “Don’t you trust me?” The age-old question every parent is eventually asked, the question we all secretly know the answer to. My southern mother answered that question when I asked it two decades ago, “ Honey, I don’t trust myself in the dark.” Hearing her words echo in my head was somehow comforting.
Perhaps this is your first Mother’s Day without your mom. If it is, be easy on yourself. This can be a tough day. I know I didn’t want a lot of fuss. I needed a hug and a card, and then I needed it to not be Mother’s Day anymore.
But in time, the bitter painful part subsided a bit, and I began to remember the good times, the funny times, the crazy-chaotic mother-daughter moments that made us pair. I could talk about her again. I could tell a story and then smile.
It takes time.
~Carol D. O’Dell
If there’s one thing we could all use a little more of, it’s mercy.
Caregivers are notoriously hard on themselves. I know, I was my own worst judge.
Caregiving isn’t easy. It’s relentless, and you can’t get it all “right.”
You can’t go on three hours sleep, physically lift another human being from the bed to a potty chair, dress them, feed them, give them their morning meds, load them in a car, drive them to the doctors, fight with the doctors, beg for proper treatment and medicine, head to the pharmacy (for them not to have what you need), stop by the store, come home and fix dinner, bathe your loved one, dispense more medicine, be pleasant to a spouse, your kids, your dog, and fall in bed at midnight only to woken up at 2am–
and still be nice!
No way!
Not day after day.
Many of my days of caring for my mom was just like that–one thing after another–physical and emotional worries, non-stop care mixed in with aspects of my own dwindling life, and yeah…I messed up all the time.
Every day, I’d say the wrong thing, hurt someone’s feelings, show up late or forget something important…
And you know what? Five years later–after my mom has passed away–and I can now look back and be okay with my caregiving, with our relationship–with me and realize that I still did a pretty good job. I loved my mom, my family, and I did the best I could. And that’s good enough.
You can’t have a long term real relationship and not have lots of foibles–misunderstandings, hurts, resentments, aggravations, you-weren’t-there-for-me, and back-off moments. Lots.
Forgiveness is like butter to dry bread. It smooth and comforting and makes life palatable.
The word mercy means:
1. Compassionate treatment, especially of those under one’s power; clemency.
2. A disposition to be kind and forgiving: a heart full of mercy.
3. Something for which to be thankful; a blessing: It was a mercy that no one was hurt.
4. Alleviation of distress; relief: Taking in the refugees was an act of mercy.
Giving yourself mercy means:
- you treat yourself with compassion
- you are kind to yourself and offer forgiveness when needed
- you are grateful for this experience and your choice to participate in caring for another
- and all this–leads to less stress! A sense of peace
I need mercy every day, and now I realize I’m the only one who has the power to give it.
The Psalmist David used the word mercy 128 times in the book of Psalms–to either describe God or ask for his loving mercy. Today, mercy is used in so many scenarios that I wonder if we’ve forgotten that it isn’t something to be used to get out of trouble (mercy/clemency, mercy killing, have mercy on my soul, mercy me!) but its deeper root is meant to make peace with yourself.
If I can’t accept my own missteps, then how can I ever expect anyone else to offer me one ounce of acceptance? How can I extend mercy to others unless I first cultivate it in my own heart toward “me?”
I’ve decided to write MERCY on three index cards and keep them in my pocket.
I carry them around with me–and if I screw up, I give myself a mercy card.
I can also mentally offer those I love a mercy card when they screw up.
Years ago, my husband and I decided that if either of us locked our keys in the car, had a fender bender, or the countless other little mess-ups that occur–things you certainly don’t mean to do, that we’d kindly offer our help and support and not give each other a hard time about it. Nobody wants to have to call someone to bring them a set of keys or tell them they crunched somebody’s bumper. We just knew that we didn’t want to be in a marriage where we had to fight or belittle the person we loved over “accidents.”
A couple of months ago, my husband went fishing with a friend. He got to the marina and realized he forgot his fishing license. I got the call (at about 6:30 am on a Sunday), got dressed and drove 20 minutes to give him his wallet. I handed it to him, kissed him good bye (I was still in my pjs) and hopped back in the car.
Later, my husband told me that his friend couldn’t believe I didn’t chew him out for making me bring him his wallet. (He didn’t make me–I chose to) Because of our agreement to give each other a break, my husband could go on and enjoy his day and not beat himself up for ruining a long-planned-for fishing trip–or for inconveniencing me. It was a gift.
Who needs more guilt added to their plate?
Besides, I’ve screwed up so many times–big and little–that it’s just best not to keep count. I don’t want a tit-for-tat marriage.
Caregivers, especially need mercy. Those who deal with the day-to-day issues of Alzheimer’s, Parkinson’s, heart disease, strokes, cancer, and many other debilitating conditions deserve an extra dose.
If you yelled, snapped back, grabbed their arm a bit too rough, was impatient, testy, forgot something important, or said something really callous–say you’re sorry, mean it, and then let it go.
You have a good heart.
You’re just overwhelmed, exhausted, irritated, and hurt. That doesn’t make you a bad person.
If I learned anything in the years of living and writing Mothering Mother, it’s that forgiveness, aka mercy, is so needed–and appreciated by all. After awhile, this gift of mercy has a wonderful and surprising effect:
You begin to offer people mercy when they don’t even ask for it, maybe don’t even deserve it.
Why? Because giving and receiving mercy feels good. Remember–less stress? It become a habit, and by offering mercy, not even in the form of words, but in attitude and demeanor, you diffuse the situation.
Hurt, resentment, bitterness loses its power when mercy is offered.
It’s not that you’re trying to be a goodie, goodie, pious person who thinks they’re perfect and/or is trying to make an impression. Practicing mercy will eventually become a way of life. It feels good and we humans tend to like to repeat experiences that make us feel good-and you never know when you’ll need to offer it to yourself because I can promise you’ll (I’ll) never stop screwing up! Consider it karma–or as my Mama used to put it, “What goes round, comes round.” (Southern karma)
This isn’t about becoming saintly. I’ve learned that I can be selfish, petty, and greedy at the drop of a hat. I don’t know if I’ll ever control all my demons, but that’s not the point. Why would I ever not want to need mercy?
Don’t wait–make those index cards and keep them close at hand. Offer yourself and your loved ones a little bit of mercy.
~Carol D. O’Dell
author of Mothering Mother
available on Amazon and in most bookstores.
Tags: Alzheimers, blog, book, caregiving, Caring.com, Carol D. O'Dell, contributing author, forgiveness, grief and loss, inspirational essay, mercy, Mothering Mother, Open to Hope
Alzheimer’s usually strikes when someone is older–a time in their life when people typically slow down.
Many Alzheimer’s live on the edge–always anxious, overly alert, agitated, and sometimes mean.
A common sight in a memory disorder unit, facility, or center (they can be called different names) is to see a person walking and walking. Pacing like a caged cougar.
They never sit. They have a wild look in their eye.
Only when you see several Alzheimer’s/dementia/Lewy Body (a Parkinson’s form of dementia) all together do you realize that your loved one isn’t the only one who does this–that it must be the effect of Alzheimer’s on the brain and nervous system.
It’s exhausting to watch and even more exhausting to keep up with.
It can cause them to wander–try to slip out–and if they do, get lost.
That’s a caregiver’s worst nightmare–their loved one out side of safety, vulnerable to everything and everyone from being hit by a car, lost in the woods, or god forbid–hurt by someone cruel.
Why can’t people with dementia or Alzheimer’s seem to settle down and relax?
Agitation is one of the challeges of Alzheimer’s behavour.
Agitation and other behavoiral changes are caused by the changes in the brain–the brain is in many ways, shrinking. The delicate pistons that fire the synapse is not always firing or hitting the intended area or “target.” This can cause all kind of sensations–a person can become sensitive to sound or light or texure–they can crave it or recoil from it. There can sometimes be hallucinations, delusions, (especially with Lewy Body–which usually includes more of a shuffled walk)
A person with advanced Alzheimer’s can forget how to talk and only babble.
Many things can happen in our brains, which means Alzheimer’s will effect people differently.
What do you do if your spouse/parent/loved one paces/walks incessantly?
- If the person with Alzheimer’s becomes anxious or If it’s safe, let them walk. I know you think they’re old, their knees are in bad shape, and how can they keep doing this? It’s a need, a drive–and at this stage of the game, their knees can’t be your primary concern. Let them walk.
- Listen to the person’s frustration. Does it make sense? Can you help in some way? Does the cat bother them–or the red planter in the window? If there’s something that’s irratating them–no matter how odd–and you can move it, then move it.
- Reassure the person. Use calming phrases and let the person know you’re there for them but also realize this may not comfort them at all. Do the best you can. Know when to be firm. Say it in a kind way, but if they’re trying to get out the door, then you will have to distract and be firm–for their own safety.
- Many people (men and women) respond better to a male voice. They perceive it as the voice of authority, so consider using a lower, clearer tone–or finding a male to impersonate Barry White for you!
- Don’t use so many words when giving direction. Be clear. 2-3 words are enough. “Sit in this chair.” “Time to eat.” Don’t yell or startle them even when it seems like it is needed. It usually doesn’t work and will only make things work. You can firmly state, “NO.” Use your strong voice, not a yelling panic voice.
- Even those with brain disorders can pick up on fear or anger–it’s contagious!
- Involve the person in activities. Use art, music or touch to help the person relax. This isn’t patronizing even though it feels like pre-school. Music therapy really does work and has been documented to sooth those who are agitated.
- Modify the environment. Decrease noise and distractions or move to another place. Just as with a young child, you baby proof your cabins and put up baby gates to keep them from falling down the stairs. This isn’t treating your elder with disrespect. This is to make them safe.
- Keep a look out for new possible hazards. It’s amazing the trouble one person with Alzheimer’s can get into!
- Find outlets for the person’s energy. Have you been outsidein the last few days? Gone for a car ride? If this is no longer possible, then have you opened the windows? Aired out the place? Can you play ball or fold towels? Some people really need that tactile sensation. Some women like dolls. Some people respond to a small dog–for others it would be a danger (for the dog, I mean
). Can you keep a Tupperware drawer and create “jobs” for them of loading and unloading?
- Keep a sense of humor. It’s just the brain gone kaflooey. Your loved one isn’t trying to mean (most of the time) or drive you crazy (most of the time).
- If you find your patience is gone for the day, then maybe you need to go as well. Just because your loved one can’t take a walk doesn’t mean you can’t.
If you’re dealing with the later stages of Alzheimer’s, dementia and memory loss, then know that you are dealing with a massive amount of stress.
Most professionals burn out at this point, and in many memory loss units, some are advised to only work three days a week so that the stress doesn’t hurt them or ripple out to the patients and their families.
You have got to de-stress! Even if you just visit your loved one, you have to let it go after the visit.
You know how you have to go through decontamination if you are exposed to radioactive material? Visualize that. Walk, cry, scream, eat–don’t forget to eat–but if you’re food cramming (stress eating in other words) then forbid anyone to bring Oreos or Doritios or whatever triggers you.
You’re in a more stressful job than air traffic control. Treat your body and your heart with tenderness during this very difficult time. Don’t expect to be on an even keel. Expect to cry, feel numb, zone out, not be able to talk about your experience–this is profound, and while that sounds terrible, it’s not. You can do this and do it with love and compassion. Your loved one needs you to watch over them.
Also know that this is the stage where many of our loved ones have to placed in a facility–for their safety and yours–because their needs are more than you and your team/community can manage.
It’s okay if this happens. You’ve done all you can. Say thank you for the help, for the option. Let them take some of the load. Find the best place you can. Visit often. Be vigilant and watch over your loved one–but know that it’s time to begin to let go. It’s time to allow others to help.
• Stay calm and be understanding. • Be patient and flexible
• Look for reasons for each particular
• Respond to the emotion, not the behavior
• Don’t argue or try to convince
• Acknowledge requests and respond to them
• Accept the behavior as a reality of the disease and try to work through it
It’s also important to prepare other family members before they visit.
Alzheimer’s can be very disturbing if you’re not familiar with the “quirks” that come with it. By talking about it ahead of time, letting the person know what they’ll see or how they’ll be talked to or treated–and how to react–will help immensely.
CNA’s and other elder-health professionals get training in dealing with Alzheimer’s behaviour, but sadly most family caregivers don’t. They have to figure it out for themselves. Many loved ones are placed in a care facility prematurely (or too late) because we simply don’t know what to say or do.
Alzheimer’s is kind of like the wizard in the Wizard of Oz. Once you go behind the curtain–begin to analyze what’s happening, why, and have tools and coping mechanisms–it’s not so intimidating.
These are still our loved ones.
Trapped inside every feeble or rigid body, behind every frozen face or babbling talk, is someone’s mom, dad, husband or wife.
Please visit this blog again!
Carol is the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir. It’s available on Amazon and in bookstores.
Tags: Alzheimers, authors, books, Caregiver Stress, caregiving, Carol D. O'Dell, Carol O'Dell, CNA, featured article, grief, healthcare, inspirational essay, memoir, memory disorder units, Mothering Mother, Open to Hope
