What are some things that surprised you when you began to care for an aging relative?

My husband and I have my father in law with us. He has Alzheimer’s and Parkinson’s, so falls often, lots of memory issues, delusions, is verbally aggressive to me and my sister in law and has lots of appointments. What surprised me most was how all consuming it was. There should have been boundaries in place. It’s hard to put them in place now, but I’m trying. Lack of sleep was unexpected and has taken a toll on me mentally and physically. (He wanders at night and is more active then than daytime.) How little other family offers to help since he’s at our house was disheartening.
Good luck whatever you decide. Remember self care isn’t selfish.

I notice a few recommendations for you here that include “discussing”.....”reasoning with”......”getting a POA”.......”long range plan”...... What these otherwise reasonable sounding considerations have neglected is that you already know that your grandmother is currently experiencing memory loss, and except when caused by a UTI, dementia causing memory loss doesn’t improve, but more typically gets worse and worse.

Then there’s the inevitable gap between “intrude on her privacy” while knowing that part of your responsibilities at some point sooner or later will become relieving her of all responsibility for decision making concerning her needs.

And ”help in the right way”? There is NO RIGHT WAY to choose how to help. As your grandmother’s ability to make good choices deteriorates, her frustration may increase, leaving you to need to learn to overlook her input while making the best of less than good choices for her care on your own.

Before you formally take charge in this situation, DO YOUR RESEARCH. Have you been given legally sanctioned access to ALL of your grandmother’s financial and health assets? Medical records? Legal status? Are you aware of local social service agencies and their potential availability for her? Have you identified and possibly visited residential sites that may serve as resources for her in the future?

Finally, do you understand that meeting requirements for safety, providing basic needs, and providing vigilance in observing changes in ALL aspects of her life is, or has potential to become, a 24/7/365 job that can last for years and years.

Your youthful altruism needs to be constantly subjected to your intelligence, intuition, observational skill, physical strength, and common sense. Is it?

What surprised me was how quickly my good intentions "to help" turned into a nightmare for me. I went from helper to controller in her eyes and she became hostile and hateful and the relationship will never be the same again. You don't want to go through that with your grandmother.

One thing that you wrote alarms me and that is "falls often." This is a sign of serious trouble that needs to be addressed. When we age the we lose the fluid around our brains so the brain is less protected during a fall. So even a simple fall with no hit to the head can cause brain injury to the elderly.

Where are her children? Are they involved with mom?

I have to agree with alot of the posters.

I always heard there were so many services for the elderly but finding them seemed impossible. And if you did you didn't qualify for one reason or another. Doctor told us to call to get home visits for a routine procedure because me taking off of work on a weekly basis was not working. When I called and they found out that my father was not utterly home bound he did not qualify.

The more you help the elder the more helpless they get. They stop seeing what you are doing for them as help and more of them doing you the favor by allowing you to help.

No one cares how you are doing. If the elder is treating you badly everyone still feels for the elder (this must be a scary time for them! poor thing!).

You will get so much misinformation for experts.

Imagine how much work this will all be. Now multiply that by 1000.....there is your answer.

What surprised me was the lack of services or help...they make lots of promises but when you actually need something they claim they can't do those things. Another surprise was rehab nursing homes and hospitals not seeming to know that urinary tract infections are very common in the elderly and can cause behavioral changes. I had to push often for a UTI test for my mom, and it always came out positive. You sound like a good and caring person and I wish you all the best in caring for your dear grandmother.

Don't do this. You have no idea what you're signing up for.

How old are you? I’m gonna guess in your 20’s or early 30’s.

When I was that age, people my age - that I am now - were always telling me “Enjoy this time. You’ll look back at it and realize it was the best time of your life”.

I don’t know if it was the best time - having a baby, meeting my (current) husband and our courtship, being able to buy my dream home - all events a little later in life certainly rank high on the list.

But yeah, overall my 20’s were footloose and fancy free. And, I did it right. I was able to move around for my job - which meant promotions and pay raises. I went out dancing almost every weekend with a group of wonderful girlfriends (the last gasp of Disco, dont cha know) and I juggled dating three guys at once.

I had an absolute blast! And, my happy memories of that time in my life helped get me through more than a couple tough times that came later on down the road - as tough times always do.

I realize that this isn’t what you asked. Sorry - not sorry. But...

I strongly recommend you reconsider the choice you are about to make. Especially, the part about moving in with your granny.

I think it’s admirable of you to want to do this - being caregiver to your grandmother. But - it’s a hard thing to do. Much harder than I’m afraid you realize. And - it will only get harder. A little assistance here and there can very well turn into a 24/7 situation with you trapped and no way to get out.

Spend some time reading the posts here. This site is full of well intentioned folks - in over their heads, abandon by other family members who are unwilling to help, their job/ career prospects diminishing with each passing year - right along with their own financial security - chained to a mentally and physically failing elder - with no way out.

Yes. Spent some time here reading the posts. And then - if you still want to give it a shot - make sure you have an exit strategy in place. And, make sure all the other family members know - these same family members who are right now, pledging to pitch in, provide breaks - the same people who will begin to avoid you like the plague when break time comes - make sure they know - WITHOUT A DOUBT - that you are starting this endeavor on a trial basis.

As to my biggest surprise? That would be - just how depressingly awful it all can get.

Everyone here is correct to say you must get POA (Power of Attorney) for your grandmother because otherwise you can't get any information from her doctors, authorize her care and treatment, or have access to her bank accounts (for her benefit ONLY) to pay her bills. You and your grandmother must consult an elder care or trust and estate attorney before going any further with this. Also, your parent who is her child and their siblings need to be on board with this.

Well, all of it was a surprise. I never imagined the level of personal care I would be taking on.
At first it was just mainly keeping my mother company, taking her to appointments and outings and simple meal prep and laundry, all things she had been managing on her own but not necessarily in the best way.
Then I started helping her trim her toenails.
Then her fingernails.
Once I moved in it became clear that she had been making due with sponge baths for a very long time, so I helped her get into the shower, then I actually washed her.
She began to fall, not often and she was able to help me get her onto her feet, but it was still a physical effort. She started using a walker but would forget when she went to the bathroom at night, so I started sleeping on the couch so I could hear when she got up.
Thankfully all of this happened gradually and I had time to fully adjust to each new task before the next one cropped up. But I never, never anticipated the level of care I would eventually provide - that she would need to be spoon fed, become dual incontinent, oh, and I mustn't forget the cognitive decline. When her mobility decreased so that she couldn't even bear weight long enough to transfer from bed to wheelchair I finally conceded defeat - totally burned out - and placed her in long term care.
Although I was reluctant to pull the trigger I did have a Plan B, I urge you to do the same and to identify which lines you aren't prepared to cross.

It will get harder and harder and harder

Make sure you get POA'd, both financial and health. If you don't get those, it's a non-starter. Also make sure you get assigned as a rep with the SSA and her insurance company. It's super frustrating to have a health insurance problem and the phone reps won't talk to you because you aren't on file.

Care for her by discussing a long range plan for her care and who has durable POA. If she is unable to or unwilling to discuss these important aspects of her care, you will be starting at a great disadvantage.

Jo, I agree with Margaret. Give yourself a couple of weeks trial. You need to consider your own needs - especially with your own privacy. You won’t have any privacy. Many seniors don’t consider the privacy of others. Many seniors are all about me, all the time. Know exactly what you are getting into. Your intentions may be good, but maybe not realistic.

Jo, I know that this isn’t what you asked, but please think twice about moving in. Could you go and stay for a couple of weeks, just to check out how it’s likely to live in practice? You need to find out about the effects on you, as well as your grandmother's needs.