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

Plodding along , nearing the end of year three of dealing with my now 95 yo parents issues with still no end in sight. Two people who cannot take care of themselves and lingering in a NH and neither with a terminal illness that is going to claim either of them. any time soon. When I started I did not realize what a soul sucking situation this was going to become. I was blissfully ignorant.

Now after three years I thought I’d be at least halfway done with managing this by now.

My parents did not put their affairs in order until very recently and I am now struggling to get my mother on Medicaid now. The stress of the uncertainty is destroying me. Tried to get them to consider taking care of this on their own, was met with anger and dismissal as if I did not have a brain in my head.

No one prepared me for the anger and resentment and depression i am feeling.

Don't do it. Sorry to say, but I have little kids, a spouse and a we need to work to keep our home. My mental health is gone, and it's not fair to my kids or spouse or myself even. My Mom failed to plan for her aging and I'm having a hard time getting her on Medicaid. She won't be living with us. I can't do it. My household would suffer financially and mentally.
I wish when I was a teenager I told my mom to start planning her shit. She had me later on life and I'm an only child. I am trying my best but I am about done dealing with this. I went from loving her to having a lot of anger and resentment towards her because of how messed up everything is due to her poor choices!

Know that love doesn’t mean that you have to do the hands on care yourself.

Don’t listen to others who insist that you should be doing the work yourself. If someone doesn’t respect your opinion, tell them that they are welcome to take over the caregiving responsibilities.

Educate yourself on whatever diseases, illnesses or disorders that they have.

Obtain a medical power of attorney in order to speak directly with the doctor to get clear information.

Reach out for help when needed.

Don’t neglect your own needs. Take regular breaks.

Ultimately caregiving is a choice, not an obligation or assumption.

Your own family (spouse, kids) have priority over parents no matter what.

Sometimes the "best" solution is the least bad option (in most cases there is no perfect solution no matter what the LO thinks).

"Best is the enemy of better".

There is really no such thing as "living independently" as long as the LO needs any kind of help on a regular basis in order to keep or maintain themselves or their house (being in their home doesn't mean they are independent if others have to orbit around them to make it possible).

I would say A) Know yourself and B) Be honest and open NOW about the future.

Under KNOW YOURSELF
I would say have a clear idea of what you will/can do and what you won't/cannot do. For me I was lucky enough to be an RN who loved her work with the elderly. However, the burden and angst of that work let me know from the get-go that I could NEVER do one on one 24/7 care of a family member, no matter how well intentioned or full of love for them I was.

UNDER BE HONEST AND OPEN NOW
1. Talk about the future. Talk about death and dying.
2 Talk about paperwork (POA/Wills/Advanced Directives.
3. Talk about elder's plans for when things get too tough to be independent. Talk about what they want done and what they don't.
4. Be honest about what YOU can do and what you cannot/would not/will not do.
5. If your elder says "I don't want to/won't talk about all that "stuff" then tell them that YOU WILL and YOU NEED TO, and then DO talk about what you can and cannot do.

A word of advice Caregiving usually Falls on one person . You may think siblings or relatives will help out but they don’t so be prepared to get a CNA , VNA , physical therapist and social worker while you are Caregiving in the Home .Your siblings will have multiple excuses and you will find the relatives show up at the funeral .

Rpiloauthor,

I am caring for an elderly mother with mild to moderate dementia, & history of hemorrhagic stroke. When my wife & I arrived my mother was on Hospice. Here's what I wish I had known before getting into all this:

The amount of constant supervision required
Mom can be in her room, TV on, quiet as a mouse. What you don't know is that she could have a sugar canister hid in there & be eating handfuls of sugar (true story), she could be pulling everything out of her closet & hanging it all over the room, she could be calling her friends & telling fibs about her care, etc. Not to mention, bathroom supervisions.

The amount of interaction required.
My mother does attention-seeking behaviors if left alone for more than 15 min. She will make up medical conditions she thinks she has & insist she go to the doctor or ER, she will tell grandiose stories that are nothing like what happened, she will snap and become aggressive, etc. It seems the better her health becomes the worse she behaves. Her hospice nurse explained she is afraid we will think she is too healthy to require help & may leave. Knowing why doesn't really help.

Dementia patients do best in a routine.
You will have to set a routine and follow it. Deviations from the normal routine will create issues for days. Committing to honoring a routine seems easy enough at first, you did it with your kids, right? Not so easy when you are ill, when you have pass on work or friends because the time doesn't work well with the routine. Every 2 hours throughout the day there is something in my mother's routine (bathroom break, meals or snacks, exercise, etc.)

You won't have help
Everyone will suddenly become too busy to help or visit or call. We came to help my sister with my mother's care. We figured (3) 8-hour shifts per day should be easy with 3 people. Within 6 days, 3 became 2, & 12-hour shifts every day is hard. You may think, "Well, she has to sleep sometime, right?" Yep, but not always when you are used to sleeping. Caring for a dementia patient is not like caring for a baby. She won't cry when she's awake & needs care. If you doze off on your shift, that's the night she wakes up & decides to trot down the street in her diaper & t-shirt.

You won't get a day off.
Even if you schedule to have a family member spend the day with her, don't count on it. It's amazing the amount of emergencies that happen to prevent loved ones from giving you a break. Even if you do get the day off, you will get phone calls for appointments, questions on care, or photos of the outing to constantly remind you that your mother is your responsibility.

It's the hardest job you will ever do with the least amount of appreciation.
Despite bending over backward, doing the best you can, cooking the best you know how, & everything else that gets crammed into your shift, you most likely will never hear the words "thank you" from patient or family members.

Expect depression - for the patient and you

Use forums like this one, it's your best bet in navigating care & the resources available. There is no one agency you can call that will connect you to all the services and care available.

Use Adult Day Care!
Check to see if you have a PACE (Program for the All-Inclusive Care of the Elderly). We enrolled my mother in PACE in Nov '23. PACE has its own insurance and accepts Medicaid & Medicare with no OOP for 55+. We chose PACE because the Adult Day Care provides doctor, nursing, physical therapy, & occupational therapy ON-SITE. What a relief it is to have PACE pick my mother on weekdays and care for her from 9a-3p, shower, exercise, schedule appointments, take her to and from appointments, & keep her entertained. They have outings & a daily schedule of activities. They feed breakfast, lunch, & a snack, & when she gets one of her new medical conditions they check it out. She has friends, enjoys her day, & is tired out when she gets home. They handle transition to MC when needed. & RESPITE. #LIFESAVER

The mental exhaustion. Family help fades away. Friends get tired of your complicated stressful life. The fact that “care facilities” do not do all the work..and you have to manage the managed care. Despite being in a pricy facility..It is tough to get the bed made daily, showers get skipped, food is ok but rarely great, no fresh fruit, moms hidden stuff can never be found by staff so you do searches over and over again. They will let her go all day without eyeglasses..so she can’t read or watch tv. And it is high risk for falls. Mom is 90 yrs old. 4 of her 5 years of Lewy Body dementia has been in an assisted living. If you have children to raise and your parent can afford to have someone else manage her care…do it!!

I echo what Geaton777 said: there is rarely if ever a "best option" or fully satisfactory solution, and you will drive yourself crazy trying to find one. "Least bad" is perfectly acceptable and often the best you can do.

Barb, Yeah that is my main regret. I retired when my parents were 92 figuring they would both be gone within two years and I could be there for them at their EOL. I am
going into year 4 at the end of next month. They have become frailer but other than that no change in their overall health. I really really wish I did not retire because I enjoyed my job. What the hell was I thinking? They could live to 100.