My parents need care but will not accept help. What should I do?

With a few exceptions, I have never had much luck with expecting government agencies to do much of anything. They mostly get in the way, under-react, or overreact. So, like everything else, you will have to find solutions on your own.
I am afraid that tough love is called for here. First, have your parents given you their POAs?...if not, you should do that while you are there. Your father is of sound mind, so speak to him about it immediately. Next, you need to arrange for some in-home care so you can go back home and arrange for more permanent solutions. Get someone to come in at least once a day to both help and monitor their safety and health. They can call you if they find anything alarming.
The house needs to be sold...it is too big, too dangerous, and too much work for them. The assets can be used for their care.
If your mother resists, call in a trusted friend, clergy member, doctor, etc. who can act as a "buffer" as you explain to her why she needs to make this change. Give her limited options that will work for you. (ie: "mother, we either need to do this or that...choose one.")
The sad result of waiting too long is that they will either injure themselves, burn down the house, or neglect themselves until adult services finally comes in and declares them incompetent. That would be the worse scenario!
The one true fact of life is that we can't always get what we want, nor is it always safe to get what we want.
Good luck...let us know how things worked out.

Thank you for answering my question but i dont think any of your suggestions would work, No i dont have POA, they will not discuss it and my mother says we are not dead yet so quit talking bout it and gets very aggressive. My father just goes with what my mother says to keep the peace. My mother will not allow anyone to come in to help her, surprisingly she hasnt kicked me and my husband out yet. I have contacted friends, the church and their MD and nobody seems to want to get involved. I guess because they have been friendly for so many years and want to respect them. Everyone knows this is not safe but nobody wants to upset my mother because of her aggressive nature recently. At church yesterday, she would not allow anyone to help her with things and people were just talking behind her back saying just let her do it, it's easier than arguing. Ugggh, I feel this knot in my stomach tightening, sticking around as long as I can but I have a job - I am even an RN (peds tho) and people are pulling my shifts and working extra for me. I feel so scared. I do appreciate your response to my question, this is becoming an impossible, emotional problem and I just can't figure out a solution.

" they dont have the nerve to tell them (including me) that is is not safe." Does the doctor know the realities of their life at home? Can you get a social worker to come out and do an evaluation? I believe you will have to get the nerve to tell them it is not safe. What does your husband think you should do? I assume you have explained to your mother what could happen if she does not take her meds. Your mother does not sound competent and just might need someone to file for guardianship but that would break your dad's heart. I think the reason she has not kicked you and your husband out is part of her emotional blackmail game. Sort of a "I hate you, but don't leave me" routine. How long have their personalities been so radically different? Your dad probably yells out of self defense and aggravation over his wife acting like she does. Have you talked with the pastor of her church? I don't think that legally you can really do anything, and quitting your job does not sound like a good idea. I had to wait until something really bad took place for my mother to give me POA both durable and medical before I could really get her the help she needed. Her stubbornness meant assisted living would not work and she ended up in the nursing home. My step-dad should be in a nursing home, but my step-brother will not take any action because his dad loves his beer. Good luck. Their are not easy answers in this situation. However, I would speak the truth in love that their situation is not safe.

Thank you for your response, I think you are the first person that actually seems to "get" my situation. Yes my husband and I are on the same page. Their doctor is aware of my concerns but does nothing. I have talked to my father many times and he just says don't worry about us, we will get by and whatever happens, happens. Well I dont think I can live with that, what if I leave and 2 weeks later something really bad happens, how will i live with myself. I have talked with the pastor and many people at the church and with many of their long time friends and everyone basically says well good luck in a nice way, feel like they all understand but are at a loss too. I sometimes think the best solution would be to contact the DMV and report my mother for unsafe driving and call APS to report the situation but part of me feels like that is underhanded and disrespectful but I know that there has to be something done and I can't hold my job off much longer. Whew, thanks for listening, but I feel like you cmgnum do understand and I thank you for that. I guess until you go thru something like this you can't really get it, ya know. Thanks again!!

As I talk to friends often the biggest frustration is that we can see the train coming but the elderly refuse to make the proactive decisions to avoid the collision. Having a nurse for a daughter doesn't change that situation. In fact it may make it harder because we know that this is going to end badly. It sounds like it will take a sentinel event to spur action. Unfortunately that will be a fall or a car accident, possibly someeone getting "lost". What you should definitely do is contact DMV and report the need for a driving eval. That I believe you are ethically bound to do because of the potential harm to someone else. In the meantime I would call eveyday. Ask neighbors or church support to watch without letting your parents know you asked or that they are being "watched". You cannot legally force your parents to make good decisions, any more than we can force our almost adult kids. Sometimes those we love make poor decisions, dangerous decisions and then we have to decide how we pick up the pieces. It makes me a little crazy. Be careful, the journey you are beginning as caregiver is a difficult one.

Thank you all for your support. I do agree I will be calling/writing the DMV because if something happened to someone else, how could I live with that. Maybe your right it may be harder being a nurse because I am trained to watch out for the bad stuff. Again, I want to thank everyone for your support, it is so great to have someone who understands my situation and can bounce ideas off of. If you dont have this problem it is difficult to understand all the dynamics of the choices, etc. Thanks and all suggestions appreciated!!

ssmiles63,
Be it parents, grown children, friends who are married or single, etc., the most painful experience is when we have shared our best advice and we end up watching them self-destruct. When anyone has done their best and done all they can legally do, then that is how you live with yourself, otherwise you drive yourself crazy by somehow taking on someone else's choice as if you made their choice which is taking on far too much personal responsibility. You are in a tough place, but there are somethings we can change as well as some we can't and then there is the need for wisdom to know the difference. I have seen various kinds of self-destruction and non of it is easy, but I tried to do what I could except I could not make their decision. I use to over react emotionally to every needy situation that I saw and that about drove me insane for given how I was raised it was easy for me that somehow it was all my fault that these people or person self-destructed.

I hug you for having a kind heart and searching for answers instead of choosing the denial route. With that said keep in mind your doing what is right for them and with this attitude you will gain strength, I can tell by your words here your a fighter. This is a battle in which it takes a great toll on your emotions so stay focused and strong for all of you.
The main thing I see in order to do anything is with Mom's meds. With what you explained her mental stability is a major part of the obsticles you need to deal with. Understanding the meds and her condition is key for you. These meds are only effective if taken as prescribed and very important to be taken as routine same time everyday, if missed or overtaken will make the mental state worsen. Some meds are fatal if taken at the same time as another. Highblood pressure and aricept cannot be taken together(same time of day). Therefore someone needs to be monitoring the meds carefully. Mom cannot be trusted to take them in such a manor. You have options to control this possibly. Is your Dad well enough mentally to see this thru and without Mom fighting with him? Or a neighbor or friend of thiers to do it? At least for now to get her straight so you can resolve other issues. You really need to get DPOA to handle finacial and medical affairs. Talking to your Mom on a reality level will be difficult so you have to do whatever it takes to get her to sign. You can have papers prepared to your needs and go to notary with someone she trusts to sign. Instead of making it seem like shes giving up control you can tell her shes gaining control. There are better times of the day that the mood is better. Try not to argue with her(I know it's hard) and do not let her see anything that she may respond to negatively, let her believe she is in control. She is fighting you because her world is confusing and all she's got left is a feeling of independence. Music is a fantastic way to create a happy mood. One step at a time is best approach for you. The car issue can be easily solved if you disconnect battery or get set of fake keys and switch them to her key ring. You simply have to do whats best and in this situation you have to do whatever works. I told a friend of mine that it was not safe for her inlaws to drive. Her and husband didn't think it was a problem until they got lost one day far away, all 4 tires blown out and scared had no idea what was going on. Thank god noone was hurt. good luck

Start going with them to their doctors and keep hammering home your concerns. I suggest that you get your dad's doctor in on the situation. You may want to slip the doctors a note giving them a better picture of what is actually happening. Many elders show one face to the doctor and another one elsewhere. If she is not able to adequately care for your dad, his doctor can order an assessment via medicare of the home situation, to "monitor his blood pressure." Talk to your mother and tell her, in many gentle ways and words, that unless she/they accept some care outside agencies will take control. Then contact a home care agency and arrange for someone to come in and bathe him once or twice a week. That person just comes for a brief time, and does one set of things (stuff for your dad) so this will not be as threatening. After they get used to the person comingin, talk to them about someone coming in and doing something else, also small. This is trying a gradual approach to get them used to having people do thigs for them. We, the cregivers, tend to want to swoop in and fix all things. Think baby steps.

Good luck

ssmiles, In 2005 while visiting my Mother and her husband, I opened the refrigerator and found all sorts of things I had bought the month before in various stages of mold. There was dog hair on the grill of the refrigerator and the dog had been gone for over 5 years. The housecleaning service was charging them a fortune for emptying the trash cans and wet mopping the tile. Mother was arguing with Onstar every time she got in the car. I refused to drive with her husband at night, and would not let my daughter, then a teenager, go with him either. Everything was a fight and the visits became ruined because they would not face reality. I contacted my sister--oh well. I contacted the husband's three adult children--they were afraid of him. HA!
Guess who had to organize the "intervention" and call Home Instead?
Who had to hire an attorney to protect my Mother from the step-kids after he died? Who found her a care home, manages her trust, and who had to finally bring her into our house?
You just have to take charge and as nice as you are, still might not be liked. Well, I can remember restricting my children when they were small, not letting them do certain things. It's called role reversal. You have heard about it, now it's here.
All the Best to YOU, and good to see you interacting and giving us feedback!
Great advice from my favorites friends, too:)) Hugs, Christina

63:

Alzheimer's. ... It robs you of yourself before it robs you of your life. I don't think your Mom is in denial -- or purposely stubborn --, but isn't able to understand the gravity of her situation. Bottom line is that they both need help. And should get it whether she likes it or not.

-- ED

thank you all so much for your input, it all helps and i will follow up with many of your suggestions, keep 'em coming,I can use all the help I can get. Thanks!!

i ma going through the same thing It is just starting and I would like to get a grip on it before it gets worse. My mom is not like the mom I know and she is acting in a parnoia way. She locks all doors puts bells on them and places chairs and ladders on every door she say she has seen people in the home. I just want to know what kind of Dr. i need to make an appointment with so I can get her the help she needs.

A geriatrician would be a good starting place.

gosh reading back, i can't believe that it is october, my brother who was my back-up died of a heart attack suddenly on april 25th, my mom found him 4 days later (hard for her), I have since left and come back to my home and job. I did get POA and the will, etc. straight. My parents have decided that they will stay in their home and whatever happens, happens. My mom did lose her driving priviledges, not due to me but the DMV tested her and she failed. They have wonderful neighbors that help them (although I am afraid they are getting a little frustrated with the huge amount of help they are giving-feel guilty, that's my job) they also have a great church family. I call daily and visit regularly and things are pretty bad, rotten food, messy house and lots and lots of confusion. My mother absolutely refuses help and for me to live with them or close by, I had to come back to work as I am the bread-winner and benefits carrier. My parents just say whatever happens happens and we will deal with it then. Not a good plan but I can't change their minds or offer any more support as I feel it is my duty and responsibility to do. I am so sorry for all those above who have and are going thru these difficulties, it's scary and sad. Their doc says there will be a disaster, but until something bad happens I cannot fix it....I want to thank all above for all your responses, they are warm and caring.Thanks and lets hope for the best for everyone!!

ssmiles63, I knew a doctor years ago who wrote an order for an elderly couple who could no longer really take care of themselves to be placed in a nursing home which did not take long and they were so much better off. I don't know if a doctor can do such a thing today. I also wonder just where does it become imperative for the adult child to have the doctor examine the parent(s) for competency to tend to their business in a business like manner and if they aren't does this mean the person with the POA has the authority to step in, take charge and get the parent(s) the needed help?

if only the doc wanted to get more involved! I called APS on myself before I left, begged for help. They came by and stayed for 5 mins and said they can make their own decisions. The lawyer told me not to call on myself again. It is just messed up and ya know? Eventually I will have to step in, but I fear a real disaster will happen first. I don't know who exactly makes the final decision?, It's coming so probably let ya know soon :( . Atleast I finally did get them to draw up the will, POA , living will, etc. so I have all that. The big thing is my mom doesnt want to give up control and especially not to her child! Thanks for responding!

We're in a similiar situation with my mother. Dad passed 7 years ago. I live the farthest away (7 hour drive) and my closest sibling is battling a brain disorder, recently had surgery and lives almost 3 hours away. I do have POA, for what it's worth at this point.
Mom had been doing fine until early in 2010 when she developed a heart problem. Now she is often confused, having difficulty making financial decisions, cannot even begin to balance her checkbook. She is very lonely and hallucinates my Dad and her parents are there with her (sundowners syndrome, we think). I've spoken to her doctor and been to appointments with her. At the most recent visit he did a Mini Cognitive test (at 10:30 am) and reports he sees some mental issues and cognitive weaknesses. It took a week of calls to finally convince his staff call Mom to have her go back to see the doctor. She refused to go.
My other brother lives closer to me than to Mom, has a job which requires a lot of travel and has his own health issues, too. But between the two of us, we try to address Mom's issues. We a met with an in home care representative a few months ago. Mom's reaction -"I'm not ready for that yet".
I could go on and on, but you get the point. We are not alone in this situation and the sad part is that we cannot easily convince our aging parents to accept our good intentions.
Last night, my husband and I argued about Mom for the first time. It will be the last time I can allow that to happen.I have been upset about this for nearly 2 years now and the situation is getting worse not only for Mom, but for the rest of us. I think we have to take better care of ourselves.
I believe I must step back a little and monitor things with binoculars instead of a magnifying glass. I hate the idea that something bad may happen, but legally, I can't prevent it yet.
Like your Mom, our Mom is argumentative and somewhat of a bully with me, in particular. I am sad to say, I'm accustomed to that. I had an aha moment this morning. Though I want Mom to be safe and would love to help improve the quality of her life, if she doesn't want it I can't force it....yet. So I'm giving myself permission to relax a little. The time will come when she doesn't have a choice and I will know what to do.
So, let's take care of ourselves as we wade our way through this most difficult time in our lives. I will try to remind myself that I still have a life and my own family who want me to have a good quality of life, not this hole of dispair I have fallen into. I hope you can find peace, too.

I loved what you wrote because it kinda made me feel a little less guilt. I can't change this, I can't change this, I can't change this.....thanks. I am sorry for your plight. Going to see them this weekend, scared to see what I may find but, I can't change this....right? I will say my husband has been wonderful because loves my Dad, my Mom, not so much but he gets "it" but still the responsibility still rests ultimately on my shoulders, not losing the guilt am I?

Well, Smiles, no, we can't loose the self imposed guilt. Unfotunately, we're basically good hearted people who love deeply and assume responsibilities, especially when someone we love needs real hands-on help. Do you know the Serenity Prayer? "Help me to Change the things and can and the grant me the Wisdom to know the difference". Make it your mantra! I try to (as you can tell from my previous note, I didn't say this is easy or even possible some times!). My wonderful husband gets "it", too, and he doesn't say much until he feels I'm being "abused".
I know you're afraid of what you may find this weekend. I'm so sorry you are going through this. Keep reminding yourself what you already know, YOU can't change this. One thing you CAN do is try not anticipate what you'll find and deal with what you do find when you get there.
Since I wrote my post this morning, my brother wrote me a slamming note because I made a decision not to force Mom into accepting in home care next week. He'll "take care of it" even if he has to take her into his home. If it were that easy, we wouldn't be going through this now! (geeze) I just can't get a break.

Even though it is difficult when you finally accomplish something & feel self satisfaction, something will change & you will have to start all over again! Mom was the easy one for me. She gladly accepted the POA forms & asked for help. She wished she could go to assisted living to get away from the situation in the house, but Dad wouldn't allow it. Try to get POA for the easy one first, your state or Elder Care law sites should have forms on line. Once Dad saw Mom was all set, he decided he wanted a lawyer to draft up the POA, set up conditionally with letters from 2 doctors. Sadly, Mom passed in June. Dad has been the stubborn bully all of his life, add on dementia & Parkinson's, Dad has fallen at least 4 times in 3 weeks, which I reported to the Drs. I have the 2 letters & POA for Dad now, taking baby steps while working full time & caring for my own family. I just 2 weeks ago convinced Dad to let me take care of his bills after he wrote a check for $1500.00 for a $43 bill. Then I find out my 45 year old brother, living in my parents home rent free for the past 5 years, has been using Dad's credit cards till they are maxed on his gas guzzling truck and has had my Dad paying his car insurance. Bro works full time & takes home 50% more than I do. I've been paying out of my pocket (until 2 weeks ago) for home care 5 days a week, as well as paying for an emergency alert service to try to have some peace of mind, because Dad told me there was not enough money for home care but too much for medicaid or food stamps. Bro has a new girlfriend, I have found out (from my brother's bank statement I found in the garbage after looking for checks that Dad accidently threw away) that he has been staying out all night at a local hotel, so Dad was alone 5 nights this month.
Ah, the most rewarding thing? After I toured 2 assisted living facilities tonight after work, I called Dad to arrange to take him to visit on Saturday. He told me he has enogh help with my Bro & that I don't ever help him with anything because he doesn't see it. He doesn't remember that I was there 2 nights ago or anytime in the past month.
I start mental therapy on Monday. :)

thanks for writing back, it is soothing to know that others understand my situation and understand the dynamics. I am sorry for all that you are going thru too. Yes, I will be reciting the serenity prayer under my breath when my mom starts saying ugly things to me this weekend!

Ssmiles63.... Try a method that works for me with my Mom. If she say's for Example: you stole my clothes, I just respond with "Oh I thought they were my clothes, I am sorry!" She's RIGHT NO MATTER WHAT! Then I change the subject to a happier time that she recalls from the past. She has good memories of her father so I'll ask her about his work or garden how he liked building bird houses anything that triggers a happy thought!!! Try to stay away from reality and your own frustations(not say you can't have them) if you send out peaceful happy vibes she'll most likely react back in same manor, believe me I know how hard it is to change a mood, but if you must go in another room, out of her sight and scream in a pillow...GO FOR IT, by all means. She knows you and what your made of because ~she IS your Mother~ and that no matter what drama she dishes out, you'll take it and still be there for her she knows this, if she didn't trust that in you, she'd be sweet and on best behavior, they never tourture the ones that run away. Your body language and facial expressions are clues to your mood she may not understand or remember everything but she is probably sensative to emotions. Praise her about anything you can think of.... call her sweet, cute, smart, beautiful. When I took my Mom in the car I would act like I was lost and say which way do I go? even if she was wrong, I'd say "Oh your so smart!" Overall it's all in the way YOU think about it.
I got a cute story... a man at the NH sitting at Mom's table was about to eat his desert (best part of the day for him probably)
jokeing,in a silly manner, I said "if you don't want that I got my eyes on it" He said back to me "I'm not sacrificing this for anything" I started that conversation because I knew that desert was his focus at the time and wanted to get him to react, and make him feel he was in charge of his desert. I said "I was kidding I don't want it." He got the joke and Mom said to me "he's a nice man!" Actually my Mother stays far away from the unhappy people and anyone who bothers her or might put her in a bad mood. She also tells me who is "cool" and who "pisses her off". She remembers personalities, but has no idea she's living in a NH or what year,day,month,season it is. It took me a while to figure this out, but, communication goes way deeper than words. The strangest thing is, I know when my Mom is in some type of distress, I get a strong uneasy feeling and I check up on her and 9 out of 10 something is bothering her. I can't explain that but it's like she calls me telepathically. Keep the Faith & go with your gut instinct and stay strong!!!!

great post!! and great suggestion! Actually I think I can do that and it might just work :), saw them this weekend and actually they seemed to be doing a little better so that was a real nice surprise. I am very fortunate that they have wonderful neighbors and a church family that is amazing! I am very thankful for that. Thanks for the idea, it just may work and keep everyone a little happier :)

I recently learned of a new service that some pharmacies have. They work with a patient's Dr. and put all the medications that are needed for the day into one bubble pack...or two if the pills need to be spread out. Then a care-giver or family member can date the bubble packs and set up them up next to a calendar. When Mom takes the pills she marks it off on the calendar. She gets a call once a day from a family member who asks if she's taken her pills...it is easier to for her to figure out if she has, or not since she just has to track the one package. Still not perfect because mistakes can be made, but it has helped a lot. When it is time for re-fills all the meds are refilled at the same time since they are all dispensed for daily consumption. The pharmacy even knows when she's about to run out and will home-deliver...which is wonderful since she can't drive anymore. Maybe your area has something like this? Good luck!

I can go you all one more step! My brother now lives with my ageing parents, has obsessive compulisve disorder and will not let me in the house and I live mroe than a half a day's plane ride away! there is no one else to help. My mother has fractured another vertebrae, Dad is totally deaf, even with hearing aids and also is in the early stages of some form of senile dementia. He is 91 and still driving!! No, I am not making this up, This is very real. I have contacted their pastor but he is still in the early stages of this with me. My parents are quite obsessed with their privacy and would actually agree with my brother about keeping me out of the house. The house if falling to bits slowly, but my mother cleans constantly so it looks immaculate if anyone should see it. HIPPA laws prevent me from speaking to their doctor. If anyone has any help at all, I would appreciate it. I am frantic about the situation, but am being actively prevented from doing anything.

Texasdaughter, HIPPA laws prevent the doctor from talking to you about your parents, but you are free to speak to whomever you want! Call or write a letter explaining that you know he or she can't violate privacy laws, but you want to share your observations. Outline what you have seen. Say you are very worried about your father still driving.

I am very sorry, but this sounds like one of those situations where it may take a crisis before anything will change. Continue working with the pastor.

Call the Adult Protective Services group in their city. I understand you can even call the police about some kind of elderly check and they take social services with them. That should result in some kind of evaluation. I know nothing about HIPPA as we have never had issues with speaking to our Mother's doctors about anything. Good luck!

Problem here is that due to OCD my brother will not let anyone in the house should they come to the front door. It sets off an OCD episode of crisis proportion. Since he has no where else to live, my parents will be having him there permanently. No recourse. Just my parents going to the urgent care clinic after the spinal fracture took 3-4 days of crisis for him to resolve the issue in his mind. Honestly, I do not know if he could let in EMT with a furney if something really awful happened. As I said, I am not allowed in the house now.

It would help if their main dr. was a geriatric specialist. They see these situations and can deal with them better than the docs that your parents have been seeing for years. It helps to insinuate yourself into the dr's appts., perhaps call the dr. (even if it's their usual dr.) and talk to him/her in advance of the appt., tell them what's going on, what it's doing to you, how unsafe the situation is. Your parents might listen to a trusted MD they've been going to for a long time. The person who made comment about role reversal and having to say/do things that they won't like, as they did when you were a child, is SO true. You could also confer with an eldercare atty in your area. They also deal with these situations, might be able to help you get POA, medical POA. If either parent is irrational or has dementia, start keeping a journal of such events and incidences, including unsafe behavior, because you might need it if you have to go to Court to have one or both of them declared incompetent in the future. Try to find a Geriatric Care Coordinator in your area. Would be a huge help for you in this situation, and you wouldn't feel like you were so alone in dealing with this. Sometimes you have to pay for their services. They can do interventions, assessments of home situations, etc.

But, since you're a nurse (as I am), check to see if any of the hospitals or geriatric practices in your area have one on staff. My hospital does, and she's been huge help to me. They have great ideas and resources. They know the eldercare attys in the area. They know the assisted living facilities. Plus, just talking to them is like a therapy session! The one at my hospital will help any employee for free. She also coordinates a Caregiver Support Group that meets once a month for employees, has speakers on diff't topics, etc. She talked to me about creating my "Circle of Support" - the people who'd be helpful to me, and would support my decisions when I'd have to have unpleasant talks or make unpopular decisions for my parents, who were still very much able to make me feel horrible, and say very mean, personal things to me when I didn't agree with them or was trying to keep them from being unsafe or preyed upon. The "Circle" can include friends who are good listeners, siblings or cousins, other people who are going thru the same thing...like this website even. I shared stories and resources back & forth with some cousins who were having a difficult time with my dad's brother who had dementia.

Best wishes to you! It's a tough situation You are just wanting the best for your parents.