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

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

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.

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!

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.

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.

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!

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.

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.

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!

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.

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.

Thank you for asking.
* Put yourself first so you have the energy, time, and focus to care for your parent. If you are not available to yourself, you are not available to them.
* Have all the legal paperwork in order - so you have whatever authority you need, be it medical procedures to selling a house.
* Get caregiver support.
* Deal with whatever feelings of guilt (is wasted energy) or other emotions you have when they come up. Do not stuff in feelings.
- Create / enlarge your network of support(ive) friends, neighbors. Enlist, as you can, your parent's neighbors/friends to support you as you need, i.e., visit them, take on a 2-4 hour shift as they can.

Do put your children first. They need you. Find ways, as is possible, to include them in visiting or care if they are at an age where they could participate. Just 'talking' / visiting with your elder parent is a huge plus (for the grandchild).

As you can / need, hire a medical or 'regular' social worker to support you/r parent needs.

As it may serve you, get into a support group. Call local association or county "senior services' and see what is out there.

Do not burn yourself out. You, your kids / immediate family, and your parent(s) will suffer the consequences. Exercise (with your kids (?)) eat healthy, get enough sleep.

Be sure t set boundaries and first know what they are ... and before that, realize how important boundary setting is. Listen to your body and head. Realize you do what you can and then you have to let it go. Prioritize what is REALLY important to do and let the other stuff go.

Except / Expect / Realize that an older parent may lash out at YOU as they are / feel closest to you. Certainly, this doesn't feel pleasant AT ALL (and it may not be a situation you'll encounter). If it does, realize they are frustrated at the situation they are in, scared, and just needing to vent. After a SHORT while, excuse yourself for 5 minutes or five hours. Do not be a punching bag. Get a caregiver in there ... find volunteers at a church ... or volunteer organization. Widen the circle of support for you/r parent, which will provide more support to you, too.

Gena / Touch Matters

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.

Know NEVER to quit your job.

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!!

So many very good suggestions. For myself it’s to realize that EVERYONE has an opinion. Smile and say thank you.

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!

How when you know the decline has picked up the pace and you sleep even less while waiting for “ the call “ .

Then after their death and funeral and have cleaned out their room (and/or home ) , how exhausted I would feel after the caregiving is over . Just finished 3rd stint with a rough final few months , still can’t sleep well. This happened the other times as well. Still feel on high alert , but totally exhausted at the same time . I wonder if other’s felt that .

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.

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

Educate yourself and make the best plan you can. Be prepared to change the plan as needed and to learn something new every day. Someone has to oversee the plan. If that person is you, make sure you have POA and any other legal authority needed to do your job. If you don’t have those things, don’t commit to taking on the responsibility. Caregiving is a huge commitment of time, patience, knowledge and resources. If you don’t have these things, make a different plan where the main caretaking responsibilities are with someone else. The choice between home care and facility care depends on a lot of factors - there is no one size fits all. Accept help if and when you can get it. Don’t count on help. Accept gratitude if and when you get it. Don’t count on gratitude. Somehow, make time for yourself and take care of your own health. Accept that you are not superhuman. But know that you are filling a need as best you can.

rpiloauthor: Realize from the start of your caregiving journey that you are going to require respite. Take it when needed; don't overthink the need for it, lest you become ill.

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.

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 .

Good Afternoon,

Call on the troops...enough said!

Ireland

I would have put my mom in a facility where she could move from Assisted living to Memory care to Nursing home in the same facility. I made the mistake of putting her in a facility that only has Independent living and Assisted living.

I like this question. I wish I would have sat my second oldest brother down and very calmly explained to him how he could have helped me to help our dear mother. Although he lived in the same town as me, only a 5 minute drive away, he was always missing in action. During the week he always had his sporting and other events to attend. Then every weekend he went up to his vacation home. On one hand he was a complete misfit, but on the other hand, I enabled him to be a complete misfit. My thought at the time is that if he doesn't have the sense on his own to want to help, then why should I “educate” him? 

In hindsight, I should have conveyed to him that rather than he try to help directly, he could help indirectly by helping me to help our mother. For example, since cooking for us took a lot of time, he could have brought over a dinner or had it delivered once in a great while. I supposed I didn’t bother with him because he didn’t have the sense on his own. But sometimes, we just need to speak up and tell people straightly what’s on our mind.

The book "36 hours" is amazing. Also, Teepa Snow has some great videos on youtube and resources for Alzheimer's/dementia care.

Along with all the other great suggestions, be aware that elder exploitation, fraud, and abuse are real issues that can happen to any family. I was completely blindsided when my 85 year old father took in a homeless woman to live in his home. Having DPOA and other documents in place before this occurred made it somewhat easier to deal with, but it has been a nightmare. Realize that adults with cognitive decline can be more trusting of strangers and not able to evaluate risk or danger. Having a close, open relationship with your vulnerable LO can go a long way toward steering them away from trouble. And a great resource for dealing with stubborn, resistant parents is the book "When Your Aging Parent Needs Help". I wish I had read the book sooner and gotten an earlier start on laying the groundwork for my father's future needs.

Since it is still early I recommend 3 books: How to Protect Your Family's Assets from Devastating Nursing Home Costs: Medicaid Secrets by Gabriel Heiser, Medicare for Dummies, and the 36 Hour Day. Search your local library for either hard cover or e-books first.
In addition to this Forum, you can also join a dementia support group through your state chapter of Alz.org. When you have issues, bring them up at a meeting for multiple suggestions. If there are non in your area, each state has virtual meetings.
There is also the Alzheimers Foundation that has plenty of on-demand video programs.

There is already good advice given about family and your health first. Financials are always a big concern which is why seeing a legal specialist can save big $$$$ in the long run. Try not to pay out of pocket for your parent's services but legal help should be paid for by parent's funding.

Welcome to the group!