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For example, for me some things don't matter as much as they used to, verses what I now prioritize as "mattering". By the way, I put this in the Mental health topic section. I'm not sure if this is the correct one to put this question in. Also I'd like to thank people on this forum as I have read other people's questions and answers and have found comfort in knowing things and how to deal with certain things thanks to the users on here, you're all amazing! :)

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The day I realized that there was no more "best solution" for mom with dementia, stroke, broken hip and CHF.

There was only the least bad choice among several. That gave me some peace and perspective.
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You can try your hardest, pray your hardest, follow all the advice and do everything right and still fail, in fact in elder care that's a given.
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Midkid58 Jan 1, 2024
AMEN!!
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It gave me KNOWLEDGE in that it was forced upon me. I had no idea how to be a POA or Trustee until the quick learning curve was forced upon me. So, yes, I learned. And directly from my brother I learned how someone with Lewy's Dementia saw the world. He was interesting as a book by Oliver Sacks, on the subject of his brain.
I learned I was capable of more than I thought I was.

These are all lessons I could well have lived without, quite honestly. I think that caregiving is dreadfully hard. As a nurse I always knew I could never do it 24/7 hands-on and survive it. I cannot imagine how people do. It will not so much "teach them the wisdom of patience" as it will "wear them down into being unable to react".

It isn't something I recommend for wisdom, whatever that wisdom thing is.
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Yes,
To try to prepare as best I can for my old age , and definitely not to impose on my children by living with them.
Try to minimize any impact my being old has on my own children .
It can be difficult though , unexpected things happen . The brain can go haywire with dementia. My biggest fear is that I will lose insight and will be uncooperative . I want to be that pleasant cooperative old lady .
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Watching my DH crash and burn emotionally as he 'tries' to deal with his Narc mom--and going from a fully functional hard working man to a guy who sleeps all day and can barely function due to depression.

All b/c one old woman with an outsized sense of entitlement WANTS what she wants--and her kids supply it.

If it weren't my own family, I wouldn't believe this could have gotten this bad.

I will NOT do this to my kids. If that's my only takeaway from 2023, it's a good one.
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I Know a Lot more about Nursing homes, rehabs , social workers , Doctors , ICU , cancer and Dementia Plus stroke and cognitive Issues . I watched 3 People die and had to take care of their affairs and clean Out apartments . I also Learned my 2 siblings and son really did Not care so I have a No expectations from them and they will no Longer be in My Life . I have Learned about greed . My Dad was taken from his Home and Nor returned . So In the end This so called biological Family Turns out it is Over and I feel Like I am starting all Over again from the beginning . You do learn a Lot of wisdom and I was there for My parents and 2 brothers . I have to Live Out the final chapter of My Life the best way I Know How and I do hope if I get Ill I will have the option of assisted suicide .
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Watched a Canadain documentary on Netflix about elder kids caring for more elder parents.
A crucible. I don't know what is to be learned from what I saw other than there is a system that doesn't care when it comes to the old. Yet will not give us a pill to make an easy final exit.
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strugglinson Jan 1, 2024
is it this documentary called " It's Not a Burden: The Humor and Heartache of Raising Elderly Parents" ?
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Yes, two things:
Getting old is not for wimps.
Life is short, make it count.
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Set strong boundaries, learn to say "NO" and mean what I say, no back peddling.

Eliminate toxic people from my life, I am entitled to live in peace and harmony, and I will claim that right.
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Great question! Thanks for posting it.

Oh gosh, I’m afraid to say that I was an extremely slow learner and was a very naive person when it came to caregiving. I had to learn things the hard way!

Mom instantly became homeless when she lost her home in hurricane Katrina. I felt so terrible for her. All I wanted to do was comfort her, so I invited her to live with us. In the beginning it was manageable. Later on it became more challenging.

I wish that I would have realized a couple of things. One, to educate myself on the progression of Parkinson’s disease and two, to have realized that I didn’t have to do the hands on care myself.

When my children said to me, “Mom, when you grow old, we will care for you like you did for grandma.” I told them, ‘Like hell you will. I want you to live your own lives.’

I look back and wonder if my ego got in the way. Sometimes, we feel that we can give our family members the best care. This isn’t reality though, because we can’t provide the care that a professional staff can. So, while my intentions were good, they weren’t realistic.
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waytomisery Jan 1, 2024
Yup ,
slow learner here as well . But when I finally did learn to say “ No” , I still could not get elderly family to understand that they needed to accept care from hired help .

We are on 3rd and 4th person with same stubbornness as the first two .
It comes to a point when they have no quality of life , it makes you just wish they would pass because it’s so hard to watch them be so miserable when they have declined so much as well as be dirty on top of it because they refuse help .
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I've told my story before, I have Stage 4 lung cancer, treatable, for now.

I still find myself getting wrapped up in my father's issues. My cousin who was helping, tells me that their first priority are their father's, which I understand. There is no other family but we both have some support amongst friends, neighbor's, etc., and some money. They've told me I'm 100% on my own, wouldn't even go 5 miles and 10 minutes out of the way to help me recently. And her brother was a bleep-head to me the last time we talked.

My father sucked away a lot of my life the last few years. Today he remembers nothing of the games, the resistance, the refusal to change, when he quit, the stuff that he engaged in the last 6 years and all he can say is "I didn't know I was such a bad guy and I don't understand".

I asked his best friend about things and he said, "6 years ago, he could have understood you, today, he just can't".

But he's not the one doing it, it's me. I keep trying to fix him, get him to live, and all I'm doing is throwing the remnants of my life at his.

A friend of mine says, "everyone loses their S*** at cancer". Yes we do! We also do it at living, dying, and everything else related to being here.

The question is has all of this given me any new found wisdom? Honestly, no. Maybe try to stop changing the things I can't change but I already knew that.

Would I change things? Well, yes, I'd get an X-Ray / Scan, as many as needed until they found the super-rare lung cancer that I have, much earlier. I'd have checked in at Stanford rather than "the local idiots who wouldn't figure it out" (not my words). But really, I don't know what I could have done.

He was my father, I wanted him to live, not die, and I tried to do that for him because I love him.

Exactly what I want for myself and I'm pretty sure, still, what he'd want for me.
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NeedHelpWithMom Jan 1, 2024
Wishing you were, Someguy. You’ve been through a lot.
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I have no wisdom sorry to say.
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@lealonnie, I’m taking your words to heart. I’ve done everything I could to make sure my mom’s physical and medical needs are met. Then I started driving myself crazy trying to meet her emotional needs and keep her “happy”. But she’s not going to be happy, even though she is surrounded by loving family & friends and getting excellent care.

My husband and I are 61 and 58. We have plans for our future. I have learned mostly through this forum not to give up those dreams because my mom is never satisfied. Tomorrow isn’t promised. Anything can happen. I still want to do my best by mom, but I’m not giving up my life and future for it.
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lealonnie1 Jan 1, 2024
Good. I'm really glad to hear you say this Lily. I'm happy I responded to SomeGuyinCa. ❤
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Yes! I am a caregiver for both my mom and dad. I'm exhausted handling it all on my own. Dad is in final stages of NPH (water on the brain) which turned into ALZ. Luckily, he is in an amazing rest home where care is top notch. My mom has dementia and homebound. I live 1,000 miles away from them and have been coming home every month to few weeks for the last few years. I'm tired and stressed to the max. I realized, since they have the funds to pay for care, I've come to terms to let some of it go and getting my mom outside assistance because I need to get back to my life which includes being more present at work and also more present with my husband and friends where I live. I still will help, I just can't keep hopping on an airplane every 2-3 weeks or monthly. I wish we had family or she had friends that could help but we don't have anyone that can help her out on a regular basis.

What I have learned through all of this, is to not retire and put my feet up and sit in front of the tv with NO hobbies. It literally sucked the life out of both my parents. They are/were not adventurous, did not vacation, or even do trips within the state they live in just to get away for a day. It has also taught me to have my life in order before my brain starts going. Make sure I have a trust/will setup earlier in life, make sure, I have a life plan for myself, and have end of life plans all intact. Also, be positive in life and never lose my sense of adventure that both my husband and I have. I feel like my parents just sat at home waiting to die. Super depressing! There is SO much more to life as you age, get out there and explore it as long as you can mentally and physically handle it.
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The hardest thing for me to learn was to not hold my demented sister accountable - for anything. And to not worry about whether she holds me accountable. She's my identical twin, so the person I've known the longest and been the closest to. There's enough of her left (so far) that it's quite a shift to stop thinking she can improve her attitude or behavior. Have to keep telling myself "can't" rather than "won't" as she always was a bit of a rebel.

Read a wonderful essay by Ann Patchett recently, telling of her acquaintance with a man who helps the homeless, the addicts, etc. He told her "I'm here to love them, not to fix them."
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I can't take credit for this pearl of wisdom but I will take credit for internalizing it. My brother-in-law told me "Don't set yourself on fire to keep someone else warm."

Wisdom I've acquired along the way caring for both of my in-laws and dealing with my FIL who now has moderate dementia:

1. When you start losing sleep, night after night, stop and listen to your body. This is your body's way of telling you that something is wrong and it's time for a change. Sleep deprivation is no joke. Protect your sleep.

2. Do not make promises over which you have no control. The only promise I will ever make to my FIL is that I will help do what is best for him. Right now that means assisted living.

3. Never take on the responsibility of caregiving without having the authority to do so. That means having *durable* power of attorney both medical and financial, which is effective the moment it is signed.

4. Do not put your own financial wellbeing/retirement at risk because of caregiving.

5. Do not put your marriage and/or children at risk because of caregiving.

6. Own your decisions. No one forces you to do anything. Everything is a choice. Think carefully about your choices and the decisions you make for yourself, for your spouse, for your children, for your job, etc.

7. You cannot reason with a broken brain.

8. You matter.
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SueZ1250 Jan 5, 2024
Oh this is sooooo good!! I’d have put POA at #1! Otherwise your options are few.
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We each have our own journey to travel in life, & I am responsible only for the choices I make.
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Get your ducks in a row before needed! Luckily, my dad gave me durable POA about five months before I really needed it. I have now given my kids POA hopefully years before they need it. Procrastination is the enemy.
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buffyintexas Jan 15, 2024
yes i believe try not to procrastinate. glad ur family let you plan.
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Always learn to stay one step ahead of a catastrophe before you become permanently stuck. Include a pathway if you become ill.
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buffyintexas Jan 15, 2024
i’m impressed 💪
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I have learned a lot actually...

I have learned there are not enough quality affordable care centers (memory care / long term care) for the number of people that need them.
I have learned that you can never have too much money saved for your care.
I have learned that you can plan all you want to, but you never know what is going to happen to you and how the last season of your life is going to play out.
I have learned that there are things scarier than death.
I have learned that I have the capacity to have compassion and empathy for someone who may not deserve it.
I have learned that I need to give POA to my daughter long before needed.
I have learned that I need to let the guilt go when I can't fix something for mom. (that one is easier said than done)
I have learned that appreciating the small stuff goes a long way. A beautiful sunrise/sunset, a laugh from my mom that is a rarity, the love of a dog, etc..
I have learned that I have my own health issues and they are equally important because if I am not here, mom has no one to help her....the whole airplane advice of put your own oxygen mask on before trying to help someone else with theirs.
I have learned that anyone who down-plays how difficult caregiving is mentally, physically and financially....has never really done it.
I have learned that I am one of many dealing with caregiving and all that entails.
I have learned aging is not for sissies.... ;-)

I love one of the other posters comments: "don't set yourself on fire to keep someone else warm".
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KLJ0925 Jan 5, 2024
James, that is wonderful!

You have indeed given us something to think about. Even some of us who have been doing this a while, need to be reminded that a 5-minute phone call with a friend or actually listening to the birds or geese as they fly by or hearing the church bells, or seeing a mother with a small child are joys that replenish us if we leave ourselves open to them.

Wisdom can also be stated as the Serenity Prayer says; "Grant me the serenity to accept the things I cannot change, courage to change the things I can and wisdom to know the difference."

It somehow helps when I feel inadequate; I am expecting to do that which I cannot. When I let go of the need to "do it all" I am a better me, for my LO and for myself.
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I consciously minimize her dementia. She is aware she has it and trusts me to make decisions that she used to make.
We work as a team.
In many ways she still functions and I find that acknowledging the successes she has builds her esteem and, in turn lessens the severity of the impairment.
It actually seems to help her "semi-recover."
She stays happy. That is my biggest reward.
No, it isn't the optimal situation, but it is visibly lessening the impact of her dementia on both of us.
Try to convey whatever "value" they have to them as it helps them cope and function.
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Wow. What a question. So many things to learn. Mostly I became aware that I am more capable than anyone or I ever thought I was. One thing, a bit different from what others have said already, that I found out is imagination doesn't go away with memory loss. In fact it seems to increase and that is good news for me as an artist should I be afflicted with it too. I eventually realized that I was actually a good person to care for my mom, since her usual practicality turned into great story telling about things that never happened. And those stories came from her true character, her need to help people and animals in distress. I do know though, reading other people's experiences, that the imagination of dementia can turn really mean and self centered. I was blessed with a mother who became more and more delightful in her imaginary world. I just wish her body had remained strong longer.
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It has taught me to ask for HELP! It has taught me that I can do all things through Christ! It has taught me that prayer changes things - not physically sometimes but the love process and the thinking process!
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Love the one your with and do all the things in your dreams before it’s too late
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I cannot be a caregiver in my own power. Even my will to do it isn't enough. I have to ask the Lord daily for the strength that I need to make it to the end.

Don't make rash promises that will be very difficult and very heavy to carry out. (like me) I don't believe that the Lord requires anyone to make vows or promises, but when we do, He expects us to keep them. So be sure to count the cost before promising anything.

Before taking on the role of caregiver for a LO, make sure that you are healthy in mind, body and spirit, because caregiving will threaten to crush even the strongest, most healthy person.

Our duty to a LO is to make sure that they receive the care and comfort that they deserve. Where they receive it is not the important piece - just that they do.

Remember that caregivers are rock stars! Each caregiver gives up their own lives to a great extent in order to care for someone who cannot care for themselves. Caregivers are our world's unsung heroes!


I will strengthen thee. (Isaiah 41:10)
When called to serve or to suffer, we take stock of our strength, and we find it to be less than we thought and less than we need. But let not our heart sink within us while we have such a word as this to fall back upon, for it guarantees us all that we can possibly need. God has strength omnipotent; that strength He can communicate to us; and His promise is that He will do so. He will be the food of our souls and the health of our hearts; and thus He will give us strength. There is no telling how much power God can put into a faithful servant. When divine strength comes, human weakness is no more a hindrance.
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NeedHelpWithMom Jan 5, 2024
Southi,

I believe your faith is genuine. Sadly, I feel as though I lost my faith years ago. I envy people who truly believe. Honestly, I don’t know what I believe anymore. I guess an accurate description would be that I am agnostic. I’m just not sure about what I believe spiritually.

I despise hypocrisy and people who hurt others in the name of God. That sort of thing chases me away from believing. I do admire people who truly live out their faith. I believe that you do.
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Most of the advice here is good advice.
-POA!
-I’ve learned that everyone’s circumstances & relationship & experience is different. One persons advice may be way off for my circumstances with my dad, but it may be right for that person. Take it as that and move on.
-I’ve also learned that if possible, have an exit (change of plans) plan before it’s needed. We may want to keep our loved one at home until death, but many times comes to a point where that’s too much or not possible. Doesn’t mean you don’t love them. Having things in place beforehand as much as possible makes that decision easier.
-Ask for help. Accept it!😊
-Love them, enjoy the bright spots no matter how little & few they are.
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I was a caregiver for 25 years and also one to an abusive parent.

I would say the best wisdom I have learned (if it can be called that) from being a caregiver is that I would never want anyone I love to become one to me.

If (God forbid) I should get dementia or become needy, put me in a care facility. I am in my right mind now and know that caregiving can ruin lives even when people have the best intentions. It ruined mine for a long time. It's not worth it.

I would never if in my right mind force someone I love to make that most disgusting of promises to never put me in a "home". For the life of me, I cannot understand how anyone who loves a person can ever ask this of them.

This is the wisdom I have learned from caregiving. Knowing when to call it a day and either get outside help or consider placement is wisdom in of itself. I've seen too many families, homes, lives, and mariages ruined because a family couldn't make the call for placement of a LO.
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southiebella Jan 5, 2024
Burnt, I agree. I'm on the "promising" end of the promise to never put my mother into a "nursing home". I have not and will not ask my children to do the same and I've told them that.
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Don't make assumptions about what happens after your loved one dies. Get a lawyer and get everything in writing and signed off by all necessary parties. Everything that is important to you or the dying person needs to be legally bound or all bets are off. You'd be amazed at how seemingly normal people can do absolutely crazy stuff after their loved one is dead. People will just snap, and burn all the bridges for a little money or junk that doesn't even matter.

My sister-in-law just went through hell when the man she loved greatly as her "step-father" died recently (in quotes because her mom was not legally married to him, and she died 20 yrs ago). For unknown reasons, he had kept his life with his sister separate from the life he had with his step-children and his step-grandchildren. So the two sides of his family didn't meet until he entered hospice two months before he died.

It seemed like his sister was very happy about finally getting to know his "step-family", and seemed very appreciative and impressed with the level of the help they were giving him as he was dying from cancer and Parkinsons. There were verbal agreements made about how he wished to buried, and about things like who got his car (they all decided that his step-grandson would get it to use when he goes off to college next year—it wasn't an expensive car). It all seemed to be going really well given the circumstances. However as soon as he died, the sister left town, the car disappeared, the funeral arrangements were different than he had requested, and it turned out that his sister who was the executor of his will, did not complete the final paperwork for the funeral. And his sister didn't show up for the funeral, so when my SIL arrived at his funeral, she was told that she had to fill out all the paperwork before the proceedings could begin or the whole thing would be canceled. The sister hasn't responded to calls or texts since she left town. It was all just a huge slap in the face at what was already an emotionally hard time.
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geddyupgo Jan 6, 2024
Wow!!! So sorry for your poor SIL!!!
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My wisdom: never ask a caregiver if God is trying to teach them a lesson. Also dont read or write posts talking about having a "spiritual glow" after going through a horrible experience. As i told my friend whom i hope that i didnt offend too much, i dont give a damn about learning a lesson from God from caregiving for my PPA wife and getting a glow from going through the experience. If its a lesson, the tuition is too high - no thank you.
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NeedHelpWithMom Jan 5, 2024
I respect other people’s faith, no matter what it is but I agree with you that people should not try to force their beliefs onto others.

Nor should they try to shame or humiliate anyone who doesn’t happen to believe in God.

It is truly sad that some of the worst people in our society have done awful things in the name of God. It’s no wonder that church attendance has dropped steadily.

I personally don’t believe anyone who says, “God told me, blah, blah, blah…”
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Wisdom or fear? I think there must be a better way to die. Hopefully more states will enact laws that would permit " aid in dying".

I am fearful that if I have to go to a NH or Rehab it will be understaffed and overwhelmed, underpaid and at times undereducated. Hopefully in time this will get better.

I was there for my family 24/7. Now my child is living across the country and not available to even talk to a doc. It is not her fault ..just a heavy-duty intense Job.

I know I am not the only care giver senior who has seen close up the reality of aging and death in America. Very few of us make the grand exit in comfort. Not even with Hospice care.

I do have wisdom enough to know I can't fix the system. But I could move to another state that allows for a kinder less cruel ride out of this world.
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Bren11 Jan 5, 2024
I agree with everything you just said here 100%. What my sweet Dad went through in the NH and then with hospice when I could no longer care for him at home has traumatized me. The "system" is beyond broken. And I worked for 3 different hospices myself so when I say they were a complete failure too, I know what I'm talking about. I pray my end is swift. I'm not sure if your experience, but I'm sorry.
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