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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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More time consuming than you ever imagined. Also a great deal of mental stress.
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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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Speaking for myself...you've come a long way baby!
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That it's hard work!
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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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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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That you have to attend to your needs FIRST. Then you can give care to others.
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That I'm stronger than I thought I was!
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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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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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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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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 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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