Follow
Share
That I hope my kids don’t have to be in my shoes for whenever the time comes that I can’t live on my own and need extra help. The situation with being caregiver for my mom, I did not choose and it has been hard on them often.
Helpful Answer (1)
Reply to SoulSurvivor
Report

Each day is a brand new day, however for my dad who has dementia and is in a wheelchair and hospital bed is in Hospice Care but still here at home. I have come to live with him and have 2 sitters who help.. In all of it I have learned to be grateful for the little things and see that growing old is NOT for Sissies!!
Helpful Answer (4)
Reply to Charles23
Report

That I never want to be in a position that requires care
Helpful Answer (3)
Reply to Sample
Report

Care giving means being less selfish
making sacrifices
learning what’s important in life
Care giving is giving back in life whether that be to a family member or to society
its about getting stronger
and dare I say it becoming a better person in life
we come into this life to make our mark but making a valued mark in life is also about contributing to life and the world around us
Care giving is hard but makes people better people

sometimes tho the lesson in life is to learn to care and respect yourself as well - that you also matter in this world and to learn boundaries and to look after yourself as well.
everyone has a different lesson to learn- only each of us know which side of the scale the lesson applies to.
either way- the lesson is a harsh one.
Helpful Answer (1)
Reply to Jenny10
Report

What have you learned?
That's a question that I ponder frequently.
I believe there's a lesson or two that I'm supposed to learn in this season of my life.
The biggest thing for me is that this has vastly improved my relationship with God.
Also, I think this is teaching me lesson's in empathy, patience and serving others.
Helpful Answer (2)
Reply to jwellsy
Report

Life is ruthless and none of us will come out of it alive.
Aging is fairly awful and we all will likely meet with uncomfortable ends by either outliving friends/loved ones, contracting a terrible disease, or wasting from dementia.
Those of us who have no spokespersons for us will likely be warehoused in a nursing some with overworked, underpaid employees providing care.
Helpful Answer (2)
Reply to Tynagh
Report

Hydration is important, both for the senior and for ME.

Don't be too picky. I learned this from a conversation that I had with Mom's 90 something year old estate lawyer.

Those who work in private duty care work really hard. I think all of Mom's home CNA's worked two jobs and some worked three jobs. Three were concurrently going to college.

Everyone enjoys a good hot breakfast.
Helpful Answer (1)
Reply to brandee
Report

That there is no "one size fits all" answer for every question. People are individuals. Try to respect the individual and the need.
Helpful Answer (1)
Reply to Taarna
Report

What I have learned is to have all the paperwork done and keep up the paperwork. You don't know when someone will confront you. I was a rep payee for my BIL taking care of his financial needs. My paperwork saved me from going to jail because of his family reporting me to social security saying I went on a lavish vacation with his money. My husband and I took care of him for 15yrs before the other family wanted in and stole from him. He is now in a nursing home and I am not his rep payee anymore. I have learned my lesson family can be cruel.
Helpful Answer (4)
Reply to Babs2013
Report

I've learned to live in the moment. With less time for myself, it is critical for my mental health to drain every last bit of satisfaction possible from my "me time." A key element of that is to live in the moment, during me time, rather than dwelling on the past or planning the future.
Helpful Answer (4)
Reply to landscaping
Report

Some of the best things I've learned are from the other caregiving "vets" from this very forum...

(forgive me, I can't remember who to credit the sayings to but you know who you are)

"You have to put on your own oxygen mask first."

"You can show elders the solution, you don't have to *be* their solution."

"Guilt is for felons and people who have done wrong (illegal, immoral, unethical things)."

"No, I can't possibly do that."

"No is a complete sentance."

"No."


And my own:

No one should be "assumed" into the caregiving role.

An expectation is a premeditated disappointment.

Sometimes people have to accept the "least bad" option as their solution.

I wish I had found this forum back in 2016 when both my in-laws were physically, cognitively and financially imploding - while my hubs and I were working full-time running our business and raising 3 young sons.

I'm so grateful for all the shared wisdom here!
Helpful Answer (6)
Reply to Geaton777
Report

I learned that you should not do any caregiving for anyone unless you are the one that has medical & financial POA.

I learned my lesson the hard way after caring for my mom.
Helpful Answer (7)
Reply to Jada824
Report
waytomisery Sep 15, 2024
Absolutely agree with this , especially if the elder is uncooperative and/or in denial of their decline .

We are facing that now , trying to set boundaries with MIL against her lack of planning , and her not leaving DH the tools needed .
(3)
Report
See 1 more reply
Don't let family take advantage of your kindness. Do what you can, and don't get pushed into doing what you can't.
Be kind and true to yourself, first.
Helpful Answer (7)
Reply to Tiredniece23
Report

You don't give up your own life in the process of supporting that of your loved one.
Helpful Answer (5)
Reply to MiaMoor
Report

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.
Helpful Answer (4)
Reply to MiaMoor
Report

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.
Helpful Answer (6)
Reply to DoggieMom86
Report
MiaMoor Sep 15, 2024
Perfect response.
(0)
Report
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.
Helpful Answer (3)
Reply to Hothouseflower
Report

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.
Helpful Answer (3)
Reply to CaregiverL
Report
Peasuep Sep 15, 2024
Yikes, CaregiverL, you’re scaring me.
(2)
Report
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.
Helpful Answer (5)
Reply to Seekerone
Report

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
Helpful Answer (7)
Reply to TouchMatters
Report
Beatty Sep 14, 2024
I vote you do write a book 📚❤️
(2)
Report
See 5 more replies
I have learned that no matter what you do to try to prevent it, falls are going to happen.
Helpful Answer (8)
Reply to XenaJada
Report

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.
Helpful Answer (1)
Reply to BurntCaregiver
Report

It's Allot mentally and physically
You do have to find some free time for yourself to recharge
Helpful Answer (2)
Reply to Mscc4463
Report

When it’s my time I just want to die quickly.
Helpful Answer (7)
Reply to Sample
Report

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.
Helpful Answer (6)
Reply to lkdrymom
Report
MiaMoor Sep 15, 2024
❤️
(1)
Report
Know when You are tired. Stop what you are doing and take a break yourself. Self care is very important.
Helpful Answer (3)
Reply to CaroleH15262802
Report

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.
Helpful Answer (4)
Reply to needtowashhair
Report

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.
Helpful Answer (1)
Reply to Pyrite
Report

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.
Helpful Answer (15)
Reply to Yancy232
Report
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.
(11)
Report
See 3 more replies
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.
Helpful Answer (9)
Reply to RetiredBrain
Report
Mythmara Sep 14, 2024
Great balanced advice.
(0)
Report
See 1 more reply
Ask a Question
Subscribe to
Our Newsletter