How do you handle it when two parents with dementia agree to let you do something, then totally forget they approved and tell you no?

Everyone is so right. You have to be there for them if they need you, but let them do their thing until they can't - or until the phone rings and something happens.
You can't tell a senior with dementia anything. They don't remember, you can't reason with them or they simply refuse help because it means giving up independence. And you can't fight that.
Hang in there and listen to the others. It will take its course and unless they are so mentally incapacitated you can have jurisdiction over them, there is nothing you can do to change their behavior, unfortunately.

I would like to thank everyone for their VERY helpful comments. They have already helped me to let go of some things, and to go about some other things differently. I know this will be a long journey, so I'm sure I'll be back. But I read this newsletter every day, and every day, I find something to help me get through it. Thank you!!!!

cappy2999, I know the frustration of trying to get outside help, and parents not wanting it. I tried having Caregivers but my Mom would be constantly arguing with them and in turn arguing with my Dad. So for my Dad's well being, I didn't bring back the caregivers once Mom shooed them out of the house on the 3rd day.

So I was the "help", and at the time I didn't realize that I was enabling my parents to keep up with their normal life style while I had to change mine.

If I had to do that all over again, I would have set boundaries as hard as that is to do. I would have cut out more than half the things I was doing. Thus forcing the parents to hire someone [with a topping of guilt]. Or forcing them to final realize the house is too much for them to handle.

So sorry you are dealing with this. Were you able to get a DPOA before things got so bad? My MIL had dementia when we got a DPOA for my husbands parents without a problem. It came in handy toward the end. However the problem was similar to your folks in that the dad thought he could do everything and long story short, MIL did not get the care she needed. My husband actually turned his father in for elder abuse. It didn't do any good but that was the level of frustration. There were many ER visits and increased dementia for both of them. We learned a little late of negligence on the part of the daughters who lived near by but they probably felt they had done the best they could. ( I found stockpiles of diabetes meds in a large plastic dish, etc). The one daughter thought she could with hold assistance until they gave in and went to assisted living. She was wrong. This is one of those situations where the primary caretaker didn't want to do the job ( lived the closest) but didn't want anyone else to do it either. The dad was very difficult. It took a hurricane to change their living status and sadly they passed away within months. They could have had an easier time of it in their last few years but they surely did it their way. That's been 8 years ago and enough time has passed for me to see that there is no magic answer. We do the best we can. Im not saying give up but people do have a right to live their lives like they want to and the die is cast long before the dementia sets in. When I get stressed I mentally run through my list of things to reassure myself that things are about as good as I can provide. I only have one relative to care for now outside of my husband and I ask myself is she clean, safe, eating, not losing weight, are her surroundings clean, does she have her meds and supplements, is she taking them, is she up on her dr visits, are her lab reports in a normal range, eyes, dental, does she need physical therapy, have I had her checked for UTI recently, bone density, are the bills paid, checking account in good shape, taxes filed, insurance paid, lawn being cared for, pet to the groomer and vet. Are things missing from the house. I no longer try to do everything myself. I do go weekly and stay over a couple of nights to visit and observe. I buy her groceries and cook for her, clean her house. I am a big fan of home health. I have an agency I've worked with about 10 years and they help me with her meds and an aid comes three times a week to help her with her bath. She gets meals on wheels three times a week, most of which she throws away. I have a relative who visits her twice a week. Her church brings her communion. She no longer wants to go. She takes little walks in her neighborhood daily. There is always something that needs attention but she is very agreeable and appreciative and that makes a huge difference. She is on memory meds and recently antidepressant. I go into all this detail because she was just as stubborn as the rest in the beginning. It took a hospital stay and MRSA to get home health started and then therapy. While she was in the hospital I had her house cleaned and got the ball rolling. Her mind was affected by anesthesia and while it improved to a degree the dementia soon became apparent. We had to go through giving up her car and all the predictable issues but little by little we have managed. Some would ask me, how did you get her to do that? I just did things as they were needed. She didn't always like it but what she didn't appreciate she got over. She lives 90 miles from me but in comparison to the three hour drive one way I had with my mom, she is not that far away. I know we are in a sweet spot right now that won't last. She will need more help before long. But for now we both enjoy the freedom from another person to manage. She's not wealthy and we will need to manage her savings. I can see her living to 100. Try to focus on the really important things first, be ready with your plan of action when the opportunity arises. It will. If there are others involved, try to be on the same page. Find an advocate fir your self to help you when you talk to them. A dr, your husband, a family friend. Sometimes they listen differently when the dynamics are changed. When there is an audience. Parents do not like their children bossing them. Try to appeal from a logical standpoint. But at some point you will find yourself taking action because it's what has to be done. When the going got tough with my FIL my husband ( who had always deferred to his sister) told him what was going to happen and it seemed like FIL was relived that finally someone was going to take over.

All of the stories above are familiar to me. I agree it is usually crisis driven with dementia and the fear of change elders have. I'm just waiting my folks out.

I have been able to get a few things done, carpet cleaning, occasional nursing care etc but I have to trick Dad into this. I don't ask, beg or cajole, he'll forget in 15 minutes even if he agreed to something. I just make attangements, tip off the person to follow my lead, and then the carpet guy is an old football buddy of mine who just stopped by, or the RN is an old girlfriend. It always works.

I've gotten so good at it that I sometimes fool Mom as well and she doesn't have dementia. You have to use whatever works.

Goober mom....I am in a very similar situation. My dad is 93, my mom is almost 90. They live alone. I live in the same town. ( the only "child" close by) My mom has developed dementia. It has not been diagnosed as Alzheimers, but I'm pretty sure that it is. My dad has a more normal type of memory loss, and is otherwise completely aware of what is going on. Other than the usual aging problems like arthritis and high blood pressure, former stroke...they are physically okay, but declining. I go there every day to check in on them, shop for them, and clean their house once a week. ( I'm 64) I tried to get help in and my mom cried and yelled so much that I canceled it, but I KNOW that they need it. My dad does not shower that much, and he is totally stressed out by the constant talking and complaining that my mother does. It is a very sad situation. However, my husband and I are mentally and physically drained and it is coming down to survival of the fittest. Does anyone have any suggestions for getting extra help? Do I simply do it and let them know that someone is coming in? Or do I cajole and plead with them to allow someone to come in? I'm sure that we will have hell to pay from my mom if I get someone in there and sometimes it seems not worth it for all the emotional turmoil and I should just keep doing it myself.

goobermom, sit down with a good attorney and ask about becoming their guardian. That will give you more authority to carry out their needs.

My Dad was the same way about wearing a life alert type of pendent. He was like that commercial where the woman says "that's for old people" when his primary doctor had recommended that because he was always falling. And he didn't want to pay the monthly fees.

It wasn't until my Mom had a serious fall at their house and passed on 3 months later of complications from the fall, that my Dad was eager to wear such a pendent, he didn't care how much it cost. And he was quick to pack what he needed when he said he was ready for Independent/Assisted Living. Too bad my Mom had to die for Dad to finally have a voice.

My mother was determine there would not be a caregiver in the home. I finally sat down with her after several trips to the hospital, gave her two options. Either assisted living or allowing for the caregiver in my home since she resides with me. Being by herself was not an option. I took her to actually tour the assisted living facilities after I had already done so. I let her know this was because I loved her and wanted to keep her safe. Mom wouldn't wear the alert necklace or bracelet, nor could she figure it out. Giving my mother only 2 options worked for us as she agreed to the caregiver. I never discuss the cost involved with having a caregiver since she tends to worry about money, which many of the elderly do.

To piggy back on freqflyer......

That phone WILL ring someday soon with an emergency. Two elderly people with dementia can't live alone without trouble brewing. An ER is a good place to start implementing change. You have Dr.'s there who will agree with you, you can enlist the support of an on-site social worker, and you'll be catching your folks when they're vulnerable. Waiting for an emergency was all I could do with my mom. And it happened, of course. And in the ER I gathered all the help and support I could.

When elderly people are sick or have dementia and insist on staying in their home it's understandable but making a choice that not only affects their safety and well-being but the lives of their adult children as well sacrifices will have to be made. If your parents are unwilling to make those sacrifices there's nothing you can do but wait for that emergency to come along. And it will.

Goobermom, welcome to the club. I went through that with my parents trying to get them to move to someplace that was more elder friendly as their house was becoming impossible for them to deal with.... it was my Mom who was very stubborn and it was Dad who kept falling, and Mom insisting that she could take care of the house and him.... oh, they were in their 90's and had what I thought was a clear mine to make decisions. Mom refused to let any outsider in the house, as she thought she could go it all.

One time I checked out a beautiful 55+ retirement community and brought over the brochure for my parents to look at. They seemed interested, but a few days later they said the brochure looks nice but maybe in a couple of years. COUPLES OF YEARS? What wait until you are 100 before moving in?

Do your parents still act like you are in your 30's? Mine did. They couldn't understand why I didn't want to climb up a ladder and shimmy up into the attic. Yeah right, at pushing 70 I am going to do that.... not.

Your role in all of this? If your parents can still manage on their own, even with the falls, sometimes you just got to let them do what they want. And in the meantime you are on pins and needles, a basket case, waiting for the phone to ring with a major emergency, all due to their stubbornness.