“Dementia isn’t a specific disease. Instead, dementia describes a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning” ~ Mayo Clinic
I’m not a licensed professional or certified caregiver for Dementia and/or Alzheimer patients. I am a daughter whose mother has been living with dementia for 3 years now. That gives me a little more than just common knowledge about being a caregiver. I’m here to share my experiences in caring for our elderly as well as shed more light on dementia.
Every patient (loved one) is different and each family has their own unique dynamic so mine may not be the same as yours, but what I’ve learned is that the condition remains the same and dealing with it should be along the same guidelines.
It’s been a long, trying road we’ve had to travel these past few years but I can honestly say that today, we’re better equipped to handle mom’s condition than we were three years ago. Now, in saying that, I can also say with every fiber of my being that it does NOT get easier… for you or them… but it does get better.
When you learn how to handle the fits and tantrums, it becomes – I gotta pause here to take a deep breath – less frustrating to deal with them.
Like any trade, caregiving is about having the right tools and knowing how to use them properly in a timely fashion. Your skills will become better, but their deteriorating state of mind will not ever become easier for you or them.
Here are some ways I’ve learned to cope everyday with mom’s dementia:
ACCEPT IT… the hardest part was for me to face the fact mom was no longer going to be that strong independent woman any more. She used to do everything on her own: cooking, cleaning, bathing, ironing, exercising, etc…
It wasn’t until she nearly burned down my sister’s apartment that we finally came to terms about her condition. Mom was cooking her lunch one day and after taking the teapot from the burner, she forgot to turn it off. Luckily my brother-in-law came home early that day and turned it off before anything happened.
Denying my mom had a memory problem was easy for me… easier than thinking her mind is slowly but surely fading to the point that she may not remember who I am someday. That is what hurt the most and that is what woke me up!
When your loved one is diagnosed with dementia, there isn’t much you can do about it. Short of asking God for a miracle of a newer, younger brain for your loved one, it’s pretty much a done deal.
Accepting it and dealing with it EARLY will benefit you and your loved one much more than staying in denial. Prolonging this first step hurts more than it helps… trust me! Yes it’s hard. Yes you won’t (initially) know how to deal with it. Yes it hurts.
But if they don’t have you and your acceptance, who do they have?
LEARN IT… be proactive in learning the early signs that your loved one’s condition may be worsening… it’s much better than being caught off guard, having to react nervously and/or wrongfully towards your loved one.
When our loved ones get older, it’s natural they forget things now and again, but when it’s something that may hurt them, like forgetting to take their diabetes or blood pressure medication, then we have to take over that specific task for them.
Make sure you understand how or where their dementia stemmed from. It makes a difference in how you care for them. You don’t have to learn everything about dementia but you do need to learn more about how it affects your loved one.
Mom’s dementia was medication induced… meaning, all the medications she’s been taking for the past 30 years for her diabetes, hypertension, osteoporosis, and hypercholesterolemia finally took their toll on her mind.
I took over mom’s medical care about 7 years ago, when my older sister went full force for her master’s degree. It wasn’t fair to expect my sister to juggle work full time, school full time and still be home in time for mom, to make sure she wasn’t left alone too long.
Being the only sibling without a spouse and my kids were all grown up, I was the natural choice to take over mom’s care.
Seven years ago, mom was on 9 different medications totaling 13 pills she ingested daily. Today she’s on 5 oral meds – 10 pills a day – and 1 injection med. I administer her oral meds and my youngest son does her insulin injections in the evening while I’m at work.
There are three young men, two working women and one lady with dementia in our household. We’ve all had our turns with mom’s lying, manipulation and bullheadedness … we’ve all learned how to deal with her on our own terms also. Learn something new every day, guarantee!
SHARE IT… our People Do Not Turn Away from our elderly family members when they get sick… Our People turn TO each other! At least that’s what I was taught.
Dementia, if you’ve not experienced it yourself, is very hard to deal with.
Think of your parents (mom or dad) and how they are in their prime (say 45 to 65 years old), then close your eyes… and think of them lying to you about taking a shower when you can clearly smell their body odor.
Think of them hiding food in all sorts of unacceptable places so that only they can access it later, come to find out, they forgot where they hid that food.
Try picturing your loved one taking a shower, while fully clothed, and then calling you to ask, “What am I doing wrong?”
Imagine your parent waking you up early in the morning when you JUST got home from work to tell you someone urinated all over their bed and that you need to clean it up then punish whomever did it.
Like who does that?
Mom asks me nearly every day, maybe three or four times each day, “How old am I again?” Once in a while, I’ll text one of my sisters… “How old is mom again?”
Their replies depend on their mood … “tell her she’s 21 and take a picture of her reaction” Haha!
I don’t care for mom by myself but sometimes it feels as if it’s just me against her world and I’m losing. The house we live in today is the same house my parents bought in 1977 when we migrated from Tutuila; maybe that is why I have a tendency to fall back to thinking mom can do what she needs to do and I don’t have to watch her 24/7… wrong move.
That’s when she walks to the backyard, without shoes, accidentally locks the side door so that I have to get out the shower, shampoo everywhere, open up the door for her and then – while shampoo is dripping down my face – clean her feet coz they hurt from all the prickly things on the ground outside. AND THEN when I’m finished with her feet and I get up to go finish showering, she accuses me of taking too long in the bathroom, that’s why she went outside to the backyard to urinate… LIKE SHE’S A DUDE!
Oh my goodness, forgive me… even writing this out it’s upsetting me.
You see now the therapeutic aspects of SHARING your duties, chores and caregiving tasks? No one person can do this all by themselves.
Our people are so full of pride, they will more so suffer silently (thinking that’s how it is done) than to ask for help. If you keep this stuff bottled up inside, you’ll either implode, killing yourself, or you’ll explode and maybe even kill others. Either way, it serves no one any goodness. Sharing is Caring =)
WALK AWAY FROM IT… the only way to appreciate caring for someone you love is to give yourself space from them, temporarily. Caregiving is a job… an honest to goodness WORK in PROGRESS day in, day out.
So like any job, you have working hours and time off, right? No one ever works 24/7, 365 days a year… not realistically and not without paying the consequences of overworking yourself.
Whether it’s for a few hours every day or a few days a month, allow time for just you. Even the caregiver has to be taken care of from time to time.
Schedule time with other family members to come and be the caregiver for a while, and then you go take care of yourself. Leave without feeling guilty and enjoy yourself. You’ll always come back, so don’t think of it as abandoning your loved one… no matter what anyone says.
In addition to working a full time job, I also stay with mom during the day while everyone is at work and school. I think of my time at work as my “daily getaway” – otherwise it’ll feel as if I’m always on the clock… that would drive me crazy.
I’m an ER Coordinator at the hospital, a glorified secretary in the Emergency Department. If I’m being honest, what I have at home is no worse (maybe even better) than what most people I meet on the job got going on. Some nights, work is so bad, I can’t wait to come home, kiss my kids, hug my mom and snuggle with my dog.
The first time I left mom for more than a day, I felt so guilty, but when the kids and my sister texted to tell me how mom was having fun watching football and playing with the great-grand-babies, it allowed me to enjoy myself. Time apart is healthy for both parties.
PRAY FOR LOVE… you’re never going to have enough patience so don’t bother praying for it. You’re going to raise your voice and/or yell from time to time… that’s normal… almost expected.
You do, however, need to pray for LOVE, because…
“…love is patient, love is kind, love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; love does not remember wrong doings; it is not irritable or resentful; love rejoices in truth; love bears all things, hopes all things, endures all things; love never ends…”
We’re not saints, we’re humans and we will fall and fail and we will hate ourselves for something terrible we did while caring for our loved ones. So you must PRAY for love so that love helps us rise above our insecurities, our sins, our misconceptions.
There’s something enlightening about praying that overwhelms your heart and soothes your soul especially during the hard times of caring for those you love. I believe God is Love and Love has kept me from suicide, homicide, genocide.
I’ve learned that loving mom above and beyond my own limits is not meant to be a burden but a blessing. The more it hurts to love her, the more I realize the pain is meant to help me grow… help me become a better person… a bigger person that brushes off the pettiness of life.
Praying allows me peace when mom’s never ending questions drown my senses. The love I feel for mom is different now that I’m caring for her like she cared for me as a child. I’m back in the shoes of a mother soothing a frightened child with just the tone of my voice. A few key words that calm her anxieties and a look on my face she knows she can trust. I’ve become my mother and she, my child.
Mom and I understand our roles most days but when she forgets, it’s always challenging to get back on track. She doesn’t ever make it easy but that’s the fun in the challenge and the thrill in seeing how bringing her back to baseline makes your world amazing! I smile as much as I cry in awe of how much I love her more each day.
In summary, the best ways to care for someone with dementia is to accept the inevitable of their memory slowly fading, learn from your best tools how to care for them, share the responsibilities of caregiving with the rest of your family, make time to take care of yourself every so often so that you’re not overwhelmed or overworked and last but definitely not least, pray that love is always the reason you’ve chosen to care for your someone who’s been diagnosed with a condition they don’t even know they’re suffering from.
Really beautiful.
Thank You 🙂