Has being a caregiver given you any new found wisdom?

The last phase of life sort of sucks in various ways--ill health, poor finances (yes, even when having saved toward retirement doesn't insure you will have enough--example, housing costs skyrocketing)--and then you die.

Yes, and now I understand the phrase "Ignorance is bliss".

Take care of yourself - "put your oxygen on first". Take the time to do good things for you. If you can't then it is time for a change - backing off, more help, a facility placement, whatever it takes.

I've posted other things I've learned.

1. I've learned that dealing with a broken brain isn't easy.
2. I've learned that things can change daily. Cherrish a good day, the bad one's are more frequent.
3. I've learned that he doesn't understand he's no longer normal, He doesn't understand that his living situation will not be in our own home at some point.
4. I've learned that financial situations change and will continue to change when he can no longer live at home. We were fortunate that we started our saving for our long term life. It's not always going to be the life you thought it would be. Reality isn't pleasant.
5. I've learned to stop feeling guilty when I report his changing brain. I've learned he'll always tell the doctor he's just fine, that he's going to say I'm always picking on him when I tell the doctor the truth. I have no reason to feel guilty, I didn't cause his problem.
6. I've learned that looking for assisted living, long term care, and memory care is difficult. Looking for the best you can find is going to be expensive.
7. I've learned the fire department loves it when I've dropped off cookies after I've had to call them to get him off the floor after a fall.
7. I've learned that we were fortunate we were smart enough to plan for our old ages.
8. I've learned that I'll be learning daily. That Alzheimer's is going to continue to be unpleasant. It's going to be difficult when I have to place him. I'm wondering at times how much stronger I must remain and know my limitations. I still haven't learned when I'm going to have to give in to his placement.
9. I've learned there is no survival guide for dealing with dementia. There's nothing written in stone to tell us how to get through this.

I realized that it is up to me to plan for my care in advance for what May or may not happen to me physically and mentally as I age. I have seen parents, relatives, friends just ignore the potential and leave it up to their kids to make those decisions for them leading to stress, ill health, and resentment toward that elderly person.

I don’t want to burden anyone with this so I am making decision as to where I will move next and working with an attorney for ways to simplify my finances. I would rather my loved ones be able to visit and spend time with me instead of having to fuss with living conditions and paying bills.

Don’t have false expectations of LO ever being pleased again , no matter what you do . They are mad that they got old . You can’t fix old.

DH and I will be burying the third of our parents this week that we were responsible for ( no sibling help ) . We are also seriously looking down the barrel of parent ( MIL ) number 4 soon .

Caregiving doesn’t get easier . But I am wiser . I know what to pack in my survival kit .

Absolutely! I have the wisdom to never do any caregiving for anyone without medical & financial POA

I've also learned that I will never promise not to put him in a nursing home. I've lost track of how many times I've had to call 911 because I can't get him up and he can't get himself up. I told him the last time he fell that was the last time. He thinks his "OH NO" will win. NOT! It's too dangerous for me and him.

The only wisdom it's given me is when to keep my mouth shut, thoughts can't be heard, and knowing my own irritabilities.

Take care of yourself first. Always.
Be sure that estate planning is in place. If you aren’t POA for your person, maybe reconsider the extent of your involvement in the day to day care. If you have no power you cannot make decisions to affect changes.
Ask for and get help. Being a caregiver to an elderly relative or incapacitated spouse can and will suck the life out of you if you try to go it alone. There are a multitude of options available for help. Take advantage of them. Don’t expect that other family members will “step up” if they haven’t already done so. You only frustrate yourself with that.
Draw reasonable boundaries and stick with them unless it’s a true emergency. If your person is in a care facility, you don’t need to go every day. Work constantly with staff, especially senior staff, to ensure your person gets what they deserve and need.
Find your grace every day through prayer, meditation, music or whatever way works for you. Remember that, like you, your person didn’t ask for this situation.
Take time for yourself. Know that others really do care.

This is a several volume response.
Unlike most here, care providing (initially caregiving and then I moved into care management, training and managing caregivers) and coordinating medical and many other needs) has been my professional for the last 12+ years. I've always been self-employed. I've worked with individuals from ages 65+ to my now current 104 year old client.

Several years ago, I studied on-line webinars with Teepa Snow, one of the country's leading experts on dementia - to learn how different parts of the brain work / cease to work.

* Around 7 years ago, I took on the responsibility of managing my friend-companion (of 20 years) care needs as they progressively increased to the level I was legally responsible for everything (POS, Fiduciary, SS Payee rep). While I won't go into all that was involved (it was immense), what I have learned most is how to be COMPASSIONATE.

SELF-CARE is essential. I thought I knew how to do that decades ago. When one is responsible for another's life - and it is a family member - we do what we have to do ... and we do the best we can at the time. And learn to 'be' okay with that. Guilt is a waste of energy and time.

It isn't 'new" found wisdom (from my experience) - It is a process of learning as we (I) go, being aware: observant, humble, open, vulnerable ... while setting boundaries. It is learning to forgive over and over again (I learned this earlier in my life), being patient balanced with knowing when to step back-regroup, and monitor the cycle of tired / renewal for another day.

I learned: I do not and will not tolerate abusive behavior or language. It is one thing to understand how and why it happens, it is quite another to subject myself to it emotionally. I learned when to step back - stop. For instance, my main first client would scream at me while driving her to a MD appt. If I made a wrong turn, she had a fit. That kind of behavior is unsafe for both of us, when I am driving. Just last year, when another client behaved this way when I was driving her somewhere, I never worked with her again, saying what was true: it is not safe for both of us.

I learned (fr a social worker) to write a contract of 'acceptable behavior" and have a client sign it (that she understood it). She changed for the better, even with dementia. She still had the wherewithal to realize that 1) she wanted me to keep working with her; and 2) if she didn't change, I would leave. This certainly isn't possible with everyone. What is possible is knowing your limits and boundaries.

AN IMPORTANT QUALITY:
1) Projecting how another feels - in their confused declining / dying brain to losing their independence, physical strength to being aware of the fears, frustrations and loneliness /aloneness another feels. This is showing compassion.
2) I innately relate(d) to clients as PEOPLE. Meaning, do not demean or talk down to a person regardless of their disabilities/decline: I relate to them as one human being relating to another. It is OKAY to say "I don't know, I'll check into that."
3) If you react / feel intimidated, work on yourself. This work may not be for you, now.

This 'work' has been an amazing journey over the last 12-15 years - somewhat unexpected ... although it has been a sacred calling so I was guided to it by entities / guides in the universe - and starting this in my 60s - when most people would be winding down from a career, I was really just getting started.

I'm certified in massage. Gentle touch is so important to an elder.
Many older people NEVER get touched other than a medical way. Making eye contact, holding their hand, smiling - can make someone's world - in that moment. Ane the moment is what we all have.

Lastly, remember that some day you will be old/er too and perhaps need a caregiver. I think of this often - how would I want to be treated? And then I show respect.

Gena / Touch Matters

Mine was that I don't have to keep bending over backwards if my mental health is getting ruined and I get more blame than appreciation coming my way.

Needausername: My out of state caregiving for my mother was a lesson confirmed - don't do this to your own adult child. Many friends and even family members asked me if I was crazy to leave my life behind to move in and care for my mother seven states away. Maybe I was, but I couldn't let my mother continue to live solo into her elder years with an entire host of ailments even though she was adamant about doing so. Zero wisdom imparted; I barely kept my sanity as an elder myself.

I was a caregiver for my verbally abusive mother with bipolar mental illness. When she was 92 and suffered several fall injuries at home, I was in charge of her pain medications and money. I did what was possible to enjoy some fun. And, I did not put up with her complaints and anger when things did not go her way. Mom lived with me until age 93 in 2013. Thank goodness my out-of-state sister and brother was available to work with me remotely until it was time for her NH facility placement. I gained wisdom through prayers and patience. After her placement near my brother, I was eventually able to return to temporary work at 58 and a permanent job at 60 in 2015.

In response to OLDDUDE, I can't say I have mastered it but I have learned to TRY not to tell others what they "should" do... rather I now try to remember to start with the phrase... "What has worked for me was........" OR "If you have not already, you might want to try........!

I know, the longer I am a caregiver I do not like being told what I should do because often it is something I have tried and it did not work for me.

It definitely is easier said than done... and I am still guilty of using the word ''should" and often regret it when I sense a bit of tension rising.

However, I agree with his statement "but we have never had anybody tell us we were wrong" because so many new caregivers are not aware of the many resources that are out there.

After years of watching over my mom and her death in 2022, I have come to the conclusion that my own expectations were just too high. I expected that I could be the super human all the way to the end. It is terrible when you find out that you will never be strong enough to meet your own expectations.

Those expectations are set before you realize what you are getting in to. Then, as you realize the difficulty, it is hard to reset your expectations to a more realistic level.

Hope I am making sense. Over a year has gone by and I still focus on my "failures" rather than my accomplishments.

I see that both things I would have listed have already been said.

* You cannot reason with a broken brain.

* I will not expect of my children what has been expected of me. And since they have not been helpful with their own father's situation, I'm not about to believe they'll be there for me. I sure hope that the inheritance from my 93yo father allows me to buy into a retirement community, and I will live out my life there.

Does anyone else follow Peggy Rowe on Facebook? She is the mother of Mike Rowe, the Dirty Jobs guy. She and her husband (she calls him PC for Prince Charming) live in Oak Crest in Baltimore, a CCRC. On Christmas her husband had a heart attack. Her comment on a recent post was, "I’m still counting my blessings—for kids who take turns being by our side—and for moving into Oak Crest BEFORE we had to." That's my goal, get in somewhere before I need it.

Yes , I made a mistake by promising not to put my mother in a facility .

Do not make that promise because it can not always be kept.

I could write multiple books on everything I have learned taking care of Mom. All the lessons taught were hard lessons.

We have had several relatives and friends who have had to go through the exact same thing with their parents. We tell them exactly what will happen and what they should do. They don't always take our advice, but we have never had anybody tell us we were wrong.

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.

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.

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.

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.

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.

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.

Love the one your with and do all the things in your dreams before it’s too late

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!

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.

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.

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".