My parents, who have dementia, flat-out refuse to move into assisted living. How do I get them to move without making them hate me?
By Carol O'Dell, Caring.com contributing editor
My parents have both been diagnosed with dementia. My father ticked his doctor off, and the doctor sent social services to their house. Now everyone (including me) agrees they need to go into assisted living, most likely a "memory care" section.
But they refuse to move and are nasty when I try to discuss it with them. They firmly believe they are moving back to New Jersey, to a house they no longer own. How do I get them into a facility and get them to stay without making them hate me forever? (I don't presently have guardianship, but I'm trying to find a way to afford to file for it.)
Getting parents to move for their safety, but against their will, is one of the most trying situations adult children face. There are actions you can take to make it happen and things you can try to make it easier for them. But in the end, you may have to accept that looking after their health and safety is more important than not hurting their feelings.
To embrace that responsibility, you need to recognize that your relationship with them is changing. Caregiving to parents with dementia turns our well-defined role as daughter or son on its head, forcing us to see ourselves differently. We have to grow up in a whole new way.
Loving your parents now means making tough decisions on their behalf, as they did for you when you were a child. This doesn't mean treating them like children, but loving and respecting them as they are now while being vigilant about their well-being.
First, you'll need to secure guardianship. You can search the American Bar Association's lawyer locator for a referral to an attorney in your area who specializes in guardianships or elder law. If you're willing to do some of the filing and processing yourself, you may be able to keep a lawyer's services to a minimum and cut costs. Also, see if your local court has a self-help center, which could also keep your legal fees down.
You'll need to supply evidence of your parents' mental or physical inability to make decisions for themselves, so contact their doctor about providing a report or letter that can be used in your application. You say that "everyone" agrees that your parents need to go into assisted living. If that includes social workers or other eldercare professionals, enlist their support.
Spend some time with your parents when you visit them. This will give you a better chance to assess what problems they may be having on their own or indications that their living situation is unsafe (forgetting to take medicines or pay bills, leaving burners on, living in unsafe or unsanitary conditions, and so forth). You can also use longer visits as an opportunity to build or strengthen their trust in you. This may sound hypocritical, but if they're suffering from dementia or Alzheimer's, it's in their best interest. Ideally, as their dementia progresses, they will come to accept your judgment and rely on you for it. Your parent's fixation on "moving back to New Jersey" isn't unusual for people with dementia or Alzheimer's.
Many people become focused on something impossible (contacting someone who has died, going to a job that no longer exists). Don't argue with them -- as it won't help. Redirect the conversation if possible, or ignore it. Even if you tell them a hundred times that they no longer own that house and can't move back, they'll ask about it again five minutes later.
Begin researching different kinds of care facilities and services in your area. A good place to begin is with the Caring.com Local Eldercare Directory. If you think there's any chance that they can stay home with help, find out about in-home care and other resources in their area.
If you're convinced that assisted living is right for them, I suggest you strongly consider moving them to a place near you so that you can oversee their care and it's convenient for you to visit. Learn about the various types of residencies nearby and find out what kind they can afford or qualify for. Set up appointments to visit the ones that sound best. When you visit care facilities, talk to the staff about your parents' aversion to moving. They are used to dealing with this and will probably have suggestions about how to handle it. You can also learn something about the home's philosophy by listening to their answers.
Do what you can to make moving more attractive to them, but in the end you may have to deceive them into moving. I know that sounds terrible, but if it really is for their safety, then do it. Even if your parents seem to hate you for it, their dementia will probably make their emotions fleeting, so try not to take their anger too personally.
Keep in mind as you begin this process that dementia can seem to come and go: Your parents may sometimes seem completely lucid when talking to other people. Eldercare professionals call this "social convention abilities," and it's something that can be hardwired in our brains -- when someone asks, "How are you?" it's almost automatic to reply, "I'm fine."
This may be disconcerting for you and make you question whether you've done the right thing, but remember that you're basing your decisions about care and residence on what you witness day to day, not on five minutes in a doctor's office or social situation.
I can guarantee that your nerves and emotions will sometimes be frazzled during this process. You may sit in your car and weep after a visit with them. You may doubt yourself at every turn, even when you know you're doing the right thing. Getting support from a caregiving group and advocates who can guide you through this maze can be a big help. And more than ever, you'll need friends, family, and other activities to remind you that life goes on beyond this.
Very helpful. I value the information on this site. One of the main reasons besides the obvious plentiful information is because on some of the most sad and frustrating days, I realize I'm not alone in this and find some comfort in others' sharings. My mom who is 84 years old has always been a strong-willed, independent woman and of course, is in complete denial of the possibility she may be heading towards alzheimers. I came back two years ago, after several telephone calls where she said she hadn't talked to me in a couple of weeks. That was the beginning of my noticing changes in her behavior, and in the past two years, more recently over the past 6 months or so, I've seen more indications that in time, there are necessary changes that will need to be made to keep her safe here in her home for as long as possible. Thank you for continuing to post very important information. It's very difficult to engage other family members without having good informational support on dementia and alzheimers, and I have found much of the information here on this site extremely helpful.
Bob's reply is excellent and follows one of the primary rules of health management. First, a diagnosis is needed before a treatment plan (in this case independence or incarceration) is instituted.
The single best advice I received regarding providing the best possible care for my mother in similar circumstances was to get her to a neurologist for a comprehensive battery of tests providing a firm basis for a diagnosis which would support a court finding of incompetence to care for herself. This is because my sister controlled Mom's money and was intent on controlling her life too. I hated the notion of thinking this about my mother, yet this was just my stuff, my pride or arrogance that my highly competent and self-sufficient mother could now be incapable of caring for herself or her affairs. Once I crossed that barrier and put her needs ahead of my own, I knew I needed to take control to do for her what she would do for herself if she had the ability. Do not wait, do not hesitate; there is nothing to lose and much to gain. Your parents are competent or not, at this point in time. if they are competent to contribute in a meaningful way to decisions about their lives - so be it - and you need to accept it. If they are not competent to do so - -so be it - - this is reality here! - you must step up to the plate for them. In either case you will be working with valid data, less from emotion, and face reality from a firm foundation of information. Also, if they are deemed competent, they can create a durable power of attorney and Health care proxy, and will and so forth; making their desires for theri Some of the expenses are avoidable and some are not. If your parents have medical insurance, eg Medicare, the cost of the neurologist and tests will be trivial. Minimizing the legal costs is another matter, unless you have legal insurance as well. if your parents have financial assets, the cost of the court, Court Evaluator, an attorney to represent you parents, an attorney to represent you, will all be eligible for payment from your parent's assets by petition to the court. If no one contests the Guardianship action, and your attorney and theirs were chosen wisely to put the interests of your parents first, those costs may be reasonable. if your parents do not have assets, you need to check with your local court system to determine how costs are covered. If you already have a durable power of attorney and health care proxy you might want to consider avoiding guardianship entirely. However, there are pros and cons to either approach. Guardianship costs more up front, while eliminating some of the uncertainties the POA leaves open; eg, not all third parties are willing to accept a POA without a hassle to prove the POA is valid and strong. On the other hand, bringing lawyers and a court [and Court Evaluators, Court Examiners, etc] is something I would never wish on anyone. Whether their motives are helpful, benign, or avaricious, courts and especially lawyers and guardians are first and foremost out to protect themselves from risk of liability; so unless you become the guardian, your parents will take second place in importance to the lawyers and guardian. This is among the few statements about this life I will make with as much certainty as that 'the sun will come up in the morning'; the lawyers will make money and be ok, the court will have no risk, the guardian will make money [unless it is you and you waive a fee] and, if they have funds, your parents will pay. Still, this may be the only way to protect your parents' interest. Prayer and patience: still the essential elements. Best Regards Bob
The writer assumes that someone has taken the care to determine if these people really are demented. Are they paying their bills on their own? Are they able to perform activities of daily living? Are they driving? Whose safety and comfort is their son really concerned about? And if they really do exhibit cognitive impairment, maybe they can remain home with a little help at home. Our middle aged children can become a little too controlling. If there's no urgency involved, let them stay where they are. If their son wants to help, get them some in home aid.
The original response is helpful and covers the breadth of consideration. However, it's been over a year since the original query was posted. I am curious how the original poster resolved the issue Beyond this, PATIENCE is the KEY...we need to spend time and build trust with our impaired loved ones. As their abilities decline the the difference is heightened between what they can no longer do and what we can do. This creates fear and mistrust (if we move too quickly and make demands). If we're going to get involved, we must decide to invest in the time to do a job that deserves to be done well.
Contact the Center for Aging (social services can direct you) to request legal assistance because you will have to obtain guardianship in the county/state where your parents live. Can your parents afford to hire a sitter/housekeeper while you complete the legal work that could take several months? Work as a team with social services, because they can take the steps to protect the safety of the elderly if the elderly refuse. In other words, maybe they will play the role of the "bad guy." Continue to communicate with your parents. Ask them what their plan is if they wake up in the morning and cannot get out of bed. Assisted living places will take people who are a "1 person assist" but if more help is required, a nursing home is the facility to provide it. Try to get them to make a good decision while they are in the position to do it. If they wind up hating you, just know you have done all you can do. Sometimes elderly parents wind up acting like they hate their children for absolutely no reason except that they are frustrated and need somebody to take it out on.
Y'all need the article I printed off yesterday ~ Talking With David Solie: Cargiving Mistakes and Lessons Learned. . . . . and if you must ~ remove the stove.
Stay the course. Your parents will not hate you. They may be angry with you but they can be anry with you and safe or be angry that you didn't take care of them. YOu are walking the same knife blade my wife and I walked just months ago. Do what your heart and consience knows if right. Don't look to family or friends to tell you that you are doing the right thing. We still have family that are mad at us for putting my mother in law in assited living. It matters little to them that Granny is clean, warm, dry, safe and entertained it only matters that they didn't get their way. The time will come when your parents cannot remember and then the anger if there really is any goes away. Just imagine if one of them got hurt or worse. What would that be like. Granny fell broke her shoulder. if we had not found her in time she could have passed. Follow your heart and consience. Sounds to me like your parents did a good job of raising you. Just apply what you know in a way that you know they would have wanted you to. Not what they want right now. Because right now is not real to them anymore.
Take them on a tour of the Assisted Living/level 1 facility (most of them are lovely), and many of the residents are fully 'with it.' Our experience was that while you are touring residents will voluntarily tell you how much they like it (I'm sure for a few of them the fear of going into a full nursing home, makes the the lessor of two evils, and they fake it until they make it). After our tour, we continually talked about 2 particular ladies that my Mom-in-law seemed to connect with in the 'cafe' and said how much they enjoyed it... that they weren't lonely at meals any more... that they always saw people and they just had to open their doors and go down to the common rooms to see others, instead of being stuck in their house, seeing no one for days on end. My Mom-in-law has recently had another fall and broke the other hip and other wrist, and will be in the rehab section of the hospital for the next 10 weeks... and all she can talk about is getting back to her 'suite' and the people in the dining room. And this was a woman who was 'not going to be forced from my house!' I'm not saying it was easy, and there weren't arguments and tears, but in the end she came around. It helped to cry along with her, or tell them with sadness (and tears) how scared you are that something might happen to them. Good luck, this is a long road.
Just over 3 years ago, my mother was showing signs of Dementia. From March through October, I tried and tried to get her to move out of her home into a senior apartment complex. She was doing dangerous things, i.e., walking outside to get the paper during an ice storm, falling and then crawling back into the house at 5 a.m. ; climbing up on the roof to clean the guttering - in March and again in October. Then one weekend the last of October, 2008, I made 5 round trips to her house (11 miles away) and 2 trips to the ER..... I quickly realized I could not continue this. We are fortunate to have a Senior Retirement Center (Assisted Living facility) just 2 blocks from my home. So I signed a contract, moved her in - all while she was in the hospital. It is the BEST thing I could have done for my mom. She was angry with me for about 6 months but now is so appreciative of all I do for her PLUS I have peace of mind that she is eating regularly, warm and most of all, SAFE. I once heard Carol Burnette say about her daughter, "You have to love them enough to make them hate you." Different scenario but the quote has never left me and that's what I felt I had to do for my mom. TOUGH LOVE! Now 25 months later, I'm having some guilt feelings over the WAY I did it but not the FACT that I did it. She never went back to her house because even driving by it left her depressed. Lately, she's been mentioning her "stuff" - she never had a chance to go through it BUT she wouldn't for 8 months so I never expected her to agree to do it anyway at any time. It's called TOUGH LOVE with your kids; well, now we (as children of these patients) have become the parents.. Ya gotta do what ya gotta do. Hope this helps.
when you love someone who gets dementia it can be hard i know this as my nan had it and it was hard on all the family and my relationship with her change my nan was very forgetful of every day stuff but happy to live in the past to recall and tell me stories while i was helping her but taking her to the toilet etc and this was hard as every time i would go to bed i would cry as every day it was like the dementia took another piece of my nan away and i ask my mum and dad to tell me what was going on with her so i felt apart of it but they didn't my sister and brother and my nan's niece,sister and brother seemed to know what was going on more than me and it was hard on me then as no one told me anything and i didn't have the confidence to stand up and speak to me but the way i feel now about it is that i am glad that they didn't in a way as i think it would of got me depressed etc and i wouldn't of be able to enjoy the bit of time that i had with her. she was aggressive to my mum but my nan would listen to my dad and that was hard to hear and seen as this happened i didn't seen any of my nan in her at all. as i looked after her for a week or two she got a bit argumentive with when it came to her dinner etc but other than that my nan know she was in my house and she was like my nan we would have a laugh etc i would let her talk about her past as well and she loved that and i learnt stuff about my family as well. when my nan was alive there was no information etc and then afterwards it was in the news alot in the paper's leaflets in the doctor's and i thought if this was about when my nan was alive then maybe she would of been around a little bit longer than what she was. So my advice i got for people going through this at the moment or it has just started is get as much information as possible and look into what help there is out there as well and use the organstions as well that are out there as they will send you information out as well.
My heart bleeds for you Carol. We (my siblings and I) had this same scenario with our mother. I had three sisters and brother at the start of my mothers dementia. On her "good days", she seemed fine. But as time went on, it was clear her dementia was worsening. My sister DA arranged to have a Visiting Nurse (VNA) come in daily to ensure my mom took her meds (coumadin was one). After a while, on her good day, she ordered the nurse not to waste an more time coming by to see her. Under the Laws of Massachusetts, the nurse had to obey. On her bad days . . who knows. My mom also was very frugal to keep the heat down as low as possible in Winter. My Sister FN came by to see her several times as week, but had her own semi-disabling health issues. My brother BE was already in a Nursing Home with brain damage and could not be of any help. Legally, if wwe tried to get involuntary guardianship, and she appeared on a "good day" .. forget it. My sister DA also prepared a weeks of meals in advance which only needed reheating. My mom had a gas stove, and soon became very clear from the blackened, encrusted post and pans that leaving the gas stove opearitive was not a good idea, so my sister DA removed the knobs and shut off the gas flow (valve behind the stove). Then the meals had to be a couple times a week. She had no community social life except attend church when she could. Finally, she had a stroke. We (my bride and I went to visit her), and we found her laying on the floor, completely incoherent and looked like she had Hypothermia from the chilled house. We called 911 and eventually was placed in a Nursing Home where she lived for another 7 years. (Medicaid became another thing, but we were very fortunate to have a local lawyer, with the local poor as clients, and practiced mostly Medicaid Law). Since we could not get total Guardianship, we obtained a health care guardianship, which gave us the means and access to her financial resources for her care. During the interim, two sisters and my brother passed away before my mother did. During that time, I worked for a Fortune 100 Company and was able to get time when I needed it. I was also able to visit my Mother on a Daily basis, and we soon became friends. If there is as point in this, modern law was designed to protect our frail from predators. Those same laws, prevent well meaning willing caregivers from access to help our relatives, and it takes some creative legalese to make it happen. I suppose this could have been shorter. But as I write this, I know I have to get this same information into the hands of MY children, as I am approaching the same age as my mother when she first began to show signs of dementia that noone recognized. By the way, I have friends in a similar position as yours. Her mom has severe dementia and her husband has been in denial. And he has the "Type A" personality that whatever he beleives, is in fact (to him) the only facts worth considering. [ i.e. he is always right!)
I may have missed something, but the subject of in-home care was not mentioned. I am a registgered guardian and have a couple of clients with dementia that are receiving wonderful in-home care. A Geriatric Care Manager can assist in determining if in-home care is appropriate.