What do you wish you knew about caregiving before your parent got sick?

rpiloauthor: Recognize the need for respite BEFORE you begin your caregiving journey; don't hesitate to take it when you are in active caregiving as no individual is a superstar.

Always have a backup plan because nothing ever goes the way you imagine. Do not rely on family or friends. They will leave you disappointed.

What everyone said here, plus I’ll add;

Watch out for perimenopause ( assuming you’re female here ) comboing w/the stress of elder care and management, especially a parent with dementia. Of course this might not be the case with you. And for me I would have gotten symptoms anyway, but this combo created a perfect storm of peri symptoms and elder care stress feeding off of and magnifying each other! Going on year EIGHT and my entire perimenopause has been during this elder care insanity. So just a head’s up!

I’d recommend staying ahead of possible peri symptoms by looking up what they might be, and possible supplement ideas and ideas for mitigation lined up in your head so you don’t get blindsided. Again, this might not be the case for you, but getting peri symptoms on top of family stress and not knowing what’s going on can be crazy making!

I’ll also emphasize that the only reliable care is via paid professionals…offers of help can and will fizz out, if they exist at all. Also better to look into that kind of help before you need it!

Best of luck to you, it is a difficult situation. Take care!

These responses are incredibly insightful, meaningful, and helpful. Thank you for taking the time to share your experiences. I am learning from so many of you and this forum.

I agree with the fact that eventhough your LO is in a facility the work still continues. Don't get me wrong when momma was living at home the work load was huge. I live out of state with no help from siblings but I now spend most of my time going behind the assisted living people that momma lives in now making them do their jobs. Don't know if all assisted living is like this but for the whole five years that momma has been in hers that is the way it is for me. The aides that give momma her medication are the best but I have never been impressed with the rest of them. Momma paids almost $6000.00 a month and has a long term care policy that dad bought. She is lucky but I can't get the management staff to process the paperwork for her to get reimbursed in a timely manner. Management blames the long term care people. It is not them! It is the assisted living facility because they are not doing their job. You know you have to pay out of pocket first and then get reimbursed. Just recently momma did not get reimbursed for Jan. and Feb. Thats $12,000.00 coming out of her account with no reimbursement. Thats alot of money! Some people cannot afford that more less paying the $6000.00 a month. It makes me think about my care for my husband and me in the future. We do not have kids and don't expect any help what so ever from siblings when we need it.

I wish I knew a way to have convinced my mom to have put me her only child in charge of her financial, medical and place to live decisions. My dad has moderate Altzheimers Dementia and my narcissistic mom is in the beginning stages. At least my dad happy in a personal care residence. You have to keep after their care. My mom is in a hospital telling me she's going home or dropping dead. She cannot live alone again while you still have to advocate for her safety. We are waiting on a court date to declare me a legal guardian. I feel that nothing can prepare you for the emotional rollercoaster of being a caretaker to dementia parents. It is very cold and lonely. You sometimes wish they would die instead of watching the long deteriorating process. You need strength, courage, wisdom and sanity. Caretaking is not for sissies! The stress will cause your own health issues too if you aren't careful. Good Luck!

It is a marathon, not a sprint.

Not everyone with dementia/alzheimers gets angry/combative. Mom never has gotten angry/combative in the 20 year journey and now she mostly sleeps.

Some family members (particularly siblings) are deadbeats. I never thought my sister would never visit or call in my 6 years of caregiving for Mom. No calls or facetimes to Mom either.

They way bills and paperwork gets misplaced. It's like their interest in the junk mail is so important, papers get tossed out. I had to go through 6 garbage bags to find all her tax stuff and luckily I came across the statement for her homeowners insurance too! I never found out from my father before he passed all the insurance policies/ investments they had either. I went through drawers of papers and sorted out everything from warranties on appliances and health services to deeds and titles,had to file for a missing car title. The thing I did was to put a shoe box on the kitchen table and all mail went in there (except magazines) to be gone through by myself. I was able to control the bills and put them in the folders I sorted out for them. These folders should not be accessible to them as they will drag everything out again! This is a given with dementia, drag something out and repeat! Mom was to get a suitcase and pack some clothes and everything was torn apart in the whole house and no suitcase with clothes! They can't help it!

I wish I knew to brace myself for be verbally abused and manipulated by my mother, receive zero gratitude, and receive complaints from back seat caregivers who weren't there with her as much as I was. Not everyone's parents become asses though, and other people have kinder relatives, c'est la vie.

I wish I knew how long frail elderly people can linger even though they are unhealthy. I wish I never retired from my job.