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I have learned that this column already exists!

Just funning with you, Starfish. and I wish you a happy welcome to the Forum.
This question has been around for us a lot.
"What have you learned from your caregiving experience? Will you make changes in your life to fulfill your desires/needs as you grow older? - AgingCare.com" appeared in 2021, and has quite a few answers. I think you can access it still by going up the the timeline, slicking on the magnifying glass and typing in "What have you Learned from Caregiving". You will find lots of nifty answers. Most universal questions like this end up in the Discussions section nearer the bottom of the page.

Me? I think that I learned to always expect the unexpected. I am a bit of a control freak. In early times I think I believed I could make a plan, could get ducks lined up in a row. But I learned that chaos will always trip in to ruin plans.
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Peasuep Sep 6, 2024
AlvaDeer, how did you learn to be comfortable with such chaos? Did you become inured to it just because of the repetitive jolts, like a dog wearing a shock-collar?
A tidy home, tidy schedule, tidy finances - these are the things that have allowed me to relax and enjoy my tidy life -until recently when the excrement began hitting the fan. And it’s only getting worse.
As a control freak yourself, how did you learn to roll with it all?
I’m sorry if this is a dumb question or the wrong place to ask it - I’ve never participated in any form of social media….it wasn’t ‘tidy’ enough for me!
Alas, here I am, bracing for the next shock.
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To keep a sense of humor! Keep things in perspective. If my mom has had a fit and is angry at me, that means I can relax, everything’s normal. I also just remove myself from the situation cause rewarding her bad behavior by giving her attention only hurts me.
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I learned to say "I cannot possible do that".... best to learn very early on when the caregiving journey starts.
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AlvaDeer Sep 6, 2024
Oh, when I first came to Forum about 5 years ago it was Ahmijoy who taught me that phrase. Just say "Oh, I couldn't possibly do that". I LOVE that one.
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Let things roll off your back, nod your head and move forward, don't over think your roll as a caregiver.
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That I can be a bad a$$ b*tch of an advocate when needed, and while I knew I was always a strong person, I don't think I realized just how strong until I was tested while caring for my late husband.
And I also learned that this too shall pass, and that there is life after caregiving.
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That I'm stronger than I thought I was!
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That you have to attend to your needs FIRST. Then you can give care to others.
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1. You cannot reason with the unreasonable…
2. Also that whatever tricks some facilities may pull, that I have at least 5 more up my sleeve to keep my loved one or patient safe, calm and feeling loved. I will always find a way around it in the fight for better care. Best yet, the ppl I am going up against never had a clue.
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Seekerone Sep 14, 2024
Thank you for caring and for fighting for vulnerable people.
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I’ve learned that you cannot argue or fight with Alzheimer’s. It’s a losing battle. Just put on a smile, try to find some sense of humor in the situation and go forward.
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That it's hard work!
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Speaking for myself...you've come a long way baby!
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I learned that mom had the best care with me but it was too much for one person.
I learned from others that now I had an elderly toddler with a will and no ability to care for herself well.
I learned that when she wanted to look at the AL facilities for a respite for me, it was a blessing she loved it so much she wanted to stay.
I learned that AL wasn’t too bad but I had cameras and they were not as good as they claimed.
I learned that mom needed one/one cuing and a person to be with her that she could depend on and trust. Not a sitter.
I learned that MC is a lonely place and no companionship because of the range of cognitive decline. Mom’s caregiver provides for her companionship, does her laundry (they fold together), walks, talks, reads, lotions, massages her skin, anticipates her needs, gives her food she will eat, feeds her if needed, is a friend!
I learned that CAMERAS are needed no matter what the management says. Staff presence are slim and they are with the ones who are the most in need. Training is not reliable, turnover is high and the camera allows me to see mom’s routines, know when she is in distress or coming down with a UTI or just dehydrated. Her caregiver found she loves Arnold Palmers. She will suck those down and say it is good.
I learned that I keep a check on the medications and routinely stop by to see what mom is getting. I had a mishap where the Doc changed her heart med. Now I have a cardiologist for her.
I learned that every battle is not worth it. And if I find out the facility doesn’t respond, I pray (I am always praying for wisdom and direction), I know that a change will occur. Moving mom to a better facility is the only way to ensure her good care. Places do not change easily and the vulnerable population are the ones affected.
I learned that my husband and I have decided for a care place that doesn’t include cameras will not ever be used. I was with my mom full days and she didn’t get well checks or food. The nurse gave her meds but the other duties were not her job. I had food for mom in her room-they allowed a frig. That place did not have a camera and was touted as the BEST by other organizations. The administrator never did a thing to address my and others issues of care. She was defensive and in full avoidance.
I learned do not believe people, but to pray, trust and look for God’s leading.
I reaffirmed that I am glad to have peace in spite of circumstances.
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Seekerone Sep 14, 2024
Most care places for elders are what you just described. People live a full life and their reward is to lay neglected and forgotten in urine-soaked sheets for the remainder of their days. I've seen too much of this to think otherwise.
When the hospital refers your loved one to a rehab or nursing facility, use a lot of caution and look for any alternative.
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More time consuming than you ever imagined. Also a great deal of mental stress.
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One thing for sure is, you can not be a 24/7 , 365 caregiver. You need a break to care for yourself ! Now can you do 24/7,365, yes you can, I have for 20 years. I thought caring for my mom was what I was responsible for. She cared for me, I should care for her. And for many years that worked. Did I care for myself, somewhat. But there has come a time in my life where a week here and a day there, simply Isn’t enough. Thought I was capable and strong but in reality I was empty. Nothing left to give. Asking and receiving help is not a sign of weakness, a sign of wisdom. So my mom (102) is headed to my sisters, we are going to alternate every 3 months. Life is going to get better.
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needtowashhair Sep 14, 2024
I'm well on my way to 20 years. I passed the 10 year hump a couple of years ago. It was harder when I was caring for 3 people. But now that it's only two, I actually have time to take a nap in the afternoon.
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I have some things that help with the chaos.
1. Keep everything simple.
There are so many products that help. From eating, dressing, entertainment, shopping, cleaning, you can find things that work and keep life simple. Who knew my 98 year old MIL would love frozen pizzas.
2. Let the patient do all they can do.
My MIL can sit in her chair, with a pull up table I got on Amazon, and use a wet wipe to wash face, put on oil of Olay, and comb her hair. Get her a table mirror and keep all her morning routine in an easy to reach place. I let her spread jelly on her toast. Every little bit is better for them and takes one thing off your plate.
3. Don’t make schedules.
Use a list of what you want done and cross off as you get to it. That way you are not adding pressure and can see all you have accomplished.
4. Don’t shop-order.
Amazon lets you return anything for any reason.
5. Mix up your in home entertainment.
Mix tv shows up a bit, play a radio, use an echo or similar device to play podcasts, read books, play all kinds of music from polka to slow Jazz. Invite a friend over and make it special with a nice snack. Sit on the porch. Plant flowers. Get all the junk mail you can get and let it be Your person’s mail. Play go fish or memory (few cards).
6. If you have the money, hire things done.
You can hire anything you want: food prep delivered, house cleaning, part time caregiving.
7. Do things you enjoy when at home: I read, write, knit, sew, paint.
8. Take care of yourself.
I exercise 4 days and take three off. Some days classes, some days walks, swimming, etc.
9. I have phrases I use. “Let’s talk about that tomorrow.” “I don’t know anything about that.” “Let me see what time it is.” Anything to break the incoherence.
10. Take naps.
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Mythmara Sep 14, 2024
Great balanced advice.
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Starts off fairly easy, then 8 years later you're up to your neck with the situation.
Each caregiver handles things differently. I've never had a "caregiver team". Just the dog and I.
Right now we are running on fumes. The end isn't that far away, and others suggest I put her in a memory care home. I'm already damaged goods and I'll never get back to where I was. Putting her in a home will push me over the edge.
I'm a Marine. We don't leave anyone behind.
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Shermantl Sep 14, 2024
Yancy232, I am touched by your honor—“we don’t leave anyone behind”— but remember that we cannot care for our loved ones if our own personal well has run dry. Perhaps don’t look at memory care as leaving your loved one behind, but as a place they will receive the care they need. There is no guilt in that, and you are worthy of living a life as well. We can do everything we can, but the flip side of that is there is only so much we are humanly capable of doing. Wishing you the best.
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That dementia is an incurable condition and the only things a lot of caregivers ask is how to get powers of attorney to do something or other legally.
Or have something to do with their time.
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When putting someone on the toilet, don't pull the diaper all the way down. That's a good way to get peed on. Pull it down half way, then as you are lowering them onto the seat, pull it down the rest of the way. It takes practice. But I haven't been peed on once since I started doing that.
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Know when You are tired. Stop what you are doing and take a break yourself. Self care is very important.
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I learned I needed to plan for my own future rather than leave it to be someone else's problem.

I learned that helping just a little bit quickly evolves into a full-time job if you don't set boundaries.

You are not the bad guy if you can't be the solution to all their problems.

Sometimes you have to throw it back on them. "what do you plan on doing about it?" "I don't know what to tell you"

I matter just as much as they do...in fact I should matter more to myself.

Other people's opinions about your situation are most often uninformed or just plain ignorant. In the end their opinion really doesn't matter and the sooner you tell them this, the better.
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MiaMoor Sep 15, 2024
❤️
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When it’s my time I just want to die quickly.
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It's Allot mentally and physically
You do have to find some free time for yourself to recharge
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I've learned a lot being a caregiver for diverse types of people for 25 years that help me in the business of caregiving. I will not work in the field hands-on ever again.

I learned a very valuable lesson caregiving for my mother. Don't be caregivers to family. Even if there isn't abusive history with the family member. If there is abusive history, always a hard NO! on the caregiving.
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I have learned that no matter what you do to try to prevent it, falls are going to happen.
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I could write a book.

What I'd call critically important:

* Realize that most family members are 'thrown' into a situation involving mental and physical decline (dementia) and that we are not taught nor prepared on how to cope / deal with it. EDUCATE yourself.

- Go to TEEPA SNOW's website (or others), read, buy books, do You Tubes, listen to her webinars (as I did for almost two years).

- Understand that the person cannot 'help' but be as they are as their brain cells are continually dying. They are functioning as best they can.

* Know your boundaries; while being compassionate.
- Set them and clearly state them (if they can understand: (put in writing; work with families members as needed).
- Know you'll have to shift how you interact at the elder changes. Everything is in motion / flux.

* Expect manipulation strategies - it is a form of self-protection as wanting their independence for as long as they can have it however much they have is everything to them.

- Realize they are frustrated, scared, confused, angry.
- Put yourself in their shoes.

* Do not argue with an elder / brain chemistry changing. It will frustrate both of you.

* As needed, tell the person what will appease them then do what is needed for their welfare (which they may not know).

* Keep an elder as calm as possible.

- Listen, offer reflective listening ("I hear you saying xxx") - realize being heard is very important to a person losing their independence. They want to be respected.

* Expect the unexpected.

* Get support (emotional from friends, family, neighbors; and physically: hire caregivers as needed as well as volunteers)

* Realize burning yourself out will be counter-productive to supporting/helping another. You won't be able to do that if you do not take care of yourself.

- Meditate, exercise, eat healthy, get enough sleep, take breaks, respites.
Self-Care is #1.

* Process / deal with feelings - all of them, esp guilt, frustration, anger.
Do not let these feelings build up; if you do, your own health/well-being will be affected as will the quality of your care for another.

It is deeply rewarding work. And working with clients is very different from having the responsibilities of caring for a loved one. Although the work may be similar.

- Realize if a family member, there are years if not decades of behavior patterns established. Understanding this will support a person to 'stop, feel, process, and make the best decision.

- Realize that you grieving the loss of your loved one. Allow this process to happen, get counseling if needed. It is heart wrenching to experience a loved one declining, often in 'slow motion' with dementia.

* Lastly, realize that you can do so much and that is not only GOOD ENOUGH, it is - and it is all you can do. Self and other compassion will serve you well.

Gena / Touch Matters
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Beatty Sep 14, 2024
I vote you do write a book 📚❤️
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I have learned to space things out. Too many appts, too much caregiving, too many duties make for a perfect storm. Much better to get a rhythm going. An appt, time to take it easy now, a lab, lay low the rest of the day. Keeping the stress at bay for everyone, especially the main caregiver and the person they care for, is a preventative cure in itself.
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I learned that caregiving at home with help from aides is way better than nursing home with all of CNAs, nurses, doctors etc all trying their best to sweep everything that goes wrong under rug and cover up their ass*s …I have more stress with mom in nursing home than when she was home. I should have kept her home until the inevitable comes.
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Peasuep Sep 15, 2024
Yikes, CaregiverL, you’re scaring me.
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It's been the hardest work I ever did. It was more stress than raising my daughter.

I am glad that I did not walk away when my mother was at her nastiest. Believe me I was tempted because it was very bad. I helped with her care for five years and was there until the very end.

I am satisfied that I did the best I could for her and that included placing her in a nursing home and filing for Medicaid for both my parents. I have no guilt and no grief. It was her time to die and I won't ever look back on these caregiving years as being something special. They were the most awful years of my life and I'm looking forward to all of it being over someday soon.

I'm still in the trenches with my father still alive in the NH but the pressure is lifting with my mother gone and the house being sold.
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I learned that you are a human being and will get angry, make mistakes, and it will wear you down physically and mentally. You have to accept saying you need help is not lack of love or caring; you need to take care of yourself to. An ill person requires a team when they get mentally and physically sick. You cannot be the nurse, physical therapist, psychologist, spiritual advisor, and loved one. Take care of your own needs. It is not selfish to do so.
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MiaMoor Sep 15, 2024
Perfect response.
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I have learned that you can't control everything, and it's best to accept your limitations early on. Don't beat yourself up for not attaining a perfection that exists nowhere but in your own head and other people's unreasonable expectations.

I've learned that you need to know when to stop. People get old and weak and it's time for them to give up. Don't push your loved ones to sit, walk, eat and drink when they don't want to - if they are old (over 80) or sick, weak or frail. It's natural to stop doing these things towards the end of life.

Say no to drugs when you are young and healthy; say yes to drugs when you are old, or ill. End of life should be pain free. Do everything to ensure a peaceful death.

Death isn't something to be scared of, even though you will miss your loved one and it will ache so bad. It's the natural conclusion to life.

Always, quality of life over quantity.
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