I am in a real pickle. My mom has been told by her doctor, and most recently by an emergency room doctor, that she needs to be living in a facility that provides some level of care or in a living situation that does not involve having to climb 2 flights of stairs. Since her hospitalization in June, Visiting Nurses has provided care in her home, and she has been considered homebound. In any case, my mom will NOT agree to do anything (set up care with someone else for when they leave) or make arrangements to have various things done (groceries, laundry, taking out trash, etc. Her nurse, her social worker, me ... we're all broken records and she won't listen. She hung up on me Monday because I was telling her something she didn't want to hear re: hiring help to get to one of her doctor's appointments or risk a fall (which could negatively impact her independence and land her in a nursing home--which she doesn't want).
The nurse told me today that they have never run into a situation like this where someone just absolutely refuses help or is this stubborn. My mom is of sound mind, but is making decisions (as I've pointed out to her) that don't support the independence she still wants. She keeps saying she won't go into a nursing home. I am an only child, not married, and there is no other family on her side to help. I'm it. And it is not an option for her to move in with me or near me. Her needs exceed my ability to meet them, and I know what my limits are. I am willing to help, provide information, facilitate care, etc. but I am unable and unwilling to take on full-time caregiving in this situation.
So my question is twofold:
1) How would you handle this situation? And if you have had to deal with it, did you have to do to get your stubborn parent to take the right action?
2) At what point would a situation be considered neglect (by an adult child) under the law if they are aware of the unsafe situation, but the senior refuses to do anything on their own behalf or spend their money to make needed changes.
I'm at my wit's end and at the end of my rope. I don't know what to do!!!!
With her poor diet and attitude, there will be a day when something significant happens, and I'm sure your mother will blame you for not helping her or agreeing to enable her unhealthy lifestyle. Just remember all the times when you've encouraged her or tried to help, but it hasn't been received.
Sometimes we just have to accept that people, relatives or not, are not going to make good decisions. Trying to bring them back on the right path only increases their antagonism toward the would-be helper.
We took over a lot for Mom, like finances, etc but the one thing we could not do was convince her to make sensible choices while alone in her room, or to use a walker or accept AL staff help. The inevitable finally happened as we knew it would and we were helpless to prevent it. Seniors will cling to their independence as long as they can. We will all get there!
Mom is 93 with dementia, living isolated alone and the usual escalating paranoia, delusions, distrust. I'm her daughter out of state about 6 hrs away. Long story but recently becoming unsafe and vulnerable. Admittedly I haven't visited in a couple months because I just don't have it in me to fight with her.
Police have been ther 4x in a month, well-check, her claiming she was burglarized and her purse stolen (she filed report with police that I stole and insisted I also be reported to my home state police), purse was found a few days later, she is withdrawing cash from bank that police saw and concerned them, she doesn't remember any of this. The electric and water were cut off for failure to pay...she had cancelled her checks in April (paranoia) unbeknownst to us. Utility company was concerned and reported the disconnection to APS.
APS took mom to bank for money order and discovered checks etc and got her utilities turned back on. Stated that mom hadn't showered and wearing dirty clothes. I welcomed call and provided tremendous background documentation to help them make a case and stated that I haven't been able to get her to budge nor have a doctor write incompetency though she has been diagnosed with dementia for 5 yrs. APS explained that they would get dr to sign and go to city attorney. I told APS that I wanted them to be the bad guys and they would have to work with legal system to get her into short term rehab or residential care and that I would work to find residential care near me.
Today they wanted my DPOA copy, which I provided, they are hoping to get dr to write she is not competent.
Mom will be ballistic.
APS stated "well now maybe with this you can avoid court hearing and court fees".
I'm scared. Will they just wash their hands and turn mom over to me as my problem? I won't have her banking worked out, a place for her to go, she can't stay with me, and I'm worried APS just wants to close the case and has no intention of helping me get her into short term rehab or similar so I can medically transfer her here when we have a bed for her.
what can or should I be doing? What can I request APS do to make mom safe while working on good solutions to minimally traumatized mom. I can live with her hating me once I get her placed; but I absolutely don't want to be the one she sees as physically removing from her home and invoking POA.
Has anyone had to do this? She is vicious and has always been vehement to stay in her home--but she refuses in home assistance of any sort and trusts no one in her home even me and my husband.
Please let me know your experience with APS.
Do start looking at places that might be to her taste in terms of post-rehab assisted living or skilled nursing. From what you describe, she is almost certain to max out on rehab progress and/or use up her days and need long-term placement rather than ever be able to return home to live independently, as much as she may wish to. As far as banking, once you have access to her paperwork, which will probalby mean searching her house to find all the critical documents and account numbers, you can likely set up online access. Or, the facility might be able to handle it by becoming her SSI representative payee instead of you; that is actually a separate process from POA. Talk to the director and/or social worker at the facility and see what they can tell you. Consider getting an estate planner or eldercare attorney to help you through things as well; it is OK to use Mom's funds for this purpose. Finally, find a real estate person because most likely you want to sell the home after it is cleaned up - and if it is too big of a task to clean it out yourself, there are companies that will do that; an estate sale is another possibility as long as it is not in too severe a condition, i.e. reaching the level of biohazard.
There is a LOT to this. A lot of work. A lot of phone calls. Prepare to keep files with all her important numbers, keep lots of copies of your POA both financial and medical, and the incapacity letter or letters handy because various people will need this. Do not sweat over her feeling angry at you or being unhappy that she cannot continue to live independently. She fought tooth and nail but that battle was inevitably lost to her progression of dementia; that's sad, yes; all you can do is try to make the best of it. You cannot worry as much about actually pleasing her or having her not hate you, because top priority is simply to get her cared for and safe.
We did have some social service involvement with my husband's parents in Philadelphia years ago. When things did fall apart, they got his mom into a geropsych and then his side of the family that lived closer found her longer-term placement. They will likely get the emergency situation resolved but leave moving her closer to you up to you. There have been children caregivers who do not actually interact with their mom or dad but who manage the finances and keep an eye on the medical care and all; there have been some who just could not do it at all and had to let mom or dad be a ward of the state. One final bit of advice, and not intended the least bit cynically - cultivate a relationship with your APS person or persons - compliment them and thank them and tell them just how hard and overwhelming you can see that their work is. You might even bring them a batch of cupcakes or flowers or something. They are overworked people with some really tough situations, and most of them really have compassion and will try very hard to do the right thing; sometimes they screw up or a doctor or a judge ties their hands, but they make the right calls and do the right things more often than not.
Now I have APS getting involved and saying she needs help which is obvious but honestly I thought there would be more medical evaluations, reports etc...I've answered all their questions but not getting any shared feedback info on what their care plan suggestion will be.
This happened to me a few yrs back when all anyone would say is you have to come and pick up your mother from behavioral center. I demanded a care team exit meeting and it was scheduled. They cancelled once I drove 4 hrs and literally dropped mom in the hallway and said sign here for her discharge. I was shocked and said I wasn't leaving without instruction. Nurse finally met with me hours later, dr unavailable...and she proceeded to give me this long care and dr and psychiatry, etc list for follow up. I was shocked, I said well your acting like she needs 24/7 care vs a couple days a week aid...she stated that she needed full time care. I was livid. 10 days before I had run out and put down payment on a bed at residential care near me. They were great and helped me organize paperwork admission. My husband drove 6 hrs to moms house to bring back furniture, personal items, etc to make new place "home"; then moved it all back when this rehab said no she could return to her home and dr didn't feel comfortable signing incompetency.
So in essence, even with planning, my experience has been they just want to dump the problem on anyone who even knows the elder or the warm body who happens to show up at discharge.
Definitely, the system needs more emergency temporary care system if elder can't return or remain in their home while family gets ducks in a row.
I'm not dragging my feet, but I want assurance that this is going to happen and mom can be placed. I'm looking into places, but it will be extremely traumatic for an angry mom and I'm expecting her to be combative so I have to find the right place that can redirect her and handle her. I don't want to get her kicked out of places or overly medicated.
I am the youngest (53) and my husband and I live in the same town. I am POA because my older brother and sister (who live in the next town over) "don't have the time" or the interest. My sister has never worked and sits at home all day while I (until recently) was working full-time and raising 2 kids. My brother is divorced with grown kids, but works 2 jobs so he "doesn't have the time or the energy" to do more than mow the lawn or shovel the snow there. My husband and I do the bills, banking, legal stuff, laundry and anything else that needs fixing (the TV remote, the radio, clocks, light bulbs, blood pressure machine, etc.) We were also doing the groceries until I finally told my sister that she has to help out with SOMETHING. She also takes them to their doctor appointments now because I had unsuccessful eye surgery and can no longer drive.
My brother & sister say they have gotten over our childhood abuse, yet they will only do their assigned chore and leave immediately because it's too stressful to spend time with my my father. They are both in denial that my parents need more care than 30 minutes a few times a week. At the risk of my marriage and sanity, I have offered to take both parents in to live with my husband and me, but my parents refused. Their tenant on the 1st floor is moving out and I think this is an ideal time for my husband and I to move in there and take care of my parents 24/7. I know my mother loves the idea, but father emphatically said "no" because he hates my husband and me, even though we've been their primary caretakers for the last 15 years. We are the only ones to host every holiday at our house (because my sister is too lazy and my brother is single and can't cook), and we always brought my parents holiday meals when they became too frail to travel. My husband spends more time there taking care of them than my brother, sister and brother-in-law combined.
My husband has not been able to find a job in over a year, and my disability check does not go very far. My father allowed my brother to live in their spare apartment after 2 divorces, and allowed my son (his grandson) to live there after he graduated from college. The last tenant was an EMT who picked them up when he heard them fall upstairs, but he has moved out. I have clinical depression, panic attacks, anxiety disorder, visual impairment, heart disease with a cardiac stent, fibromyalgia, IBS, low self-confidence and no self-esteem. My father refusing to help us after we've done so much for them really hurts. It would be a win/win for all of us, but my siblings (and my mom) are still so afraid of getting my father mad that they won't back me up. Like others I've read about here, we are just waiting for one of them to end up in a hospital so they can be sent to a NH. Ideally my father, because I promised my mom I would not put her in a NH, and would take her in to care for her full-time. I just want my mom to have some peace and happiness, before she dies, without my dad's tyranny.
I've met with a rep from the Alzheimer's Center near us. She came to my parents' house to evaluate them and their house, but my father locked himself in his room the whole time. My mother "showboated" to look normal and healthy. The rep pointed out fire hazards that needed to be fixed, but when I told my father, he refused to have anything fixed because "it was his house and nobody is going to tell him how he can live in it." I had to secretly get an electrician to change their fuse box to circuit breakers so their house insurance wouldn't be cancelled.
I know this is long - other than my husband, I just don't get a lot of emotional support from anyone, and I am mentally exhausted. I'm tired of fighting with dad to do the right things to take care of both of my parents, and my depression is getting worse every day...
As you pointed out, something bad will eventually happen, and then so will the change in their living situation. Don't move them in with you or you in with them out of your sense of guilt and duty - everyone will hate every minute of it. And I know you think of your mom as the victim who deserves a better life, but honestly - she stayed with your dad and did not defend you; granted women of her generation were taught NOT to stand up to abuse and to defer to male authority - and she may not know what to do without him ruling the roost and probablly does not want to leave the roost either. How sure are you she would really be happy in your care either? And, you can't be guaranteed that Dad will end up in hospital and unable to go home or pass on first. Your husband and you sacrificing even more of your selves than you already are will not make mom and dad happier or safer. You say you promised Mom "no nursing home" but that would not make it wrong to find an assisted living or independent living place at any point, depending what she qualifies for.
This is a stressful time and you are propping your parents up in a situation that is marginal and can't be maintained long term. Your mental and physical health are deserving of attention. This ordeal will end - try to keep hope alive - bu you do need to make sure it doe not end by YOU being the first one to go. That happens to overextended caregivers. Put your own oxygen mask on first. Take a minute and at least pat yourself on the back for holding up and doing as much as you have done. It is extraordinary. YOU are extraordinary. Your sibs maybe stay away and limit their involvement out of healthy self-preservation at this point. It is sad that your dad is such a completely self-centered, macho man who is happy to make others miserable when he has the power to. As far as you possibly can, stop giving him the power to make you miserable. Do what you can to help without killing yourself, try again later with the Alz visitor or even APS, and realize that you have done enough.
Mmewcomb - your Mom may need Adult Protective Services to look in on this if he does not recover his walking ability and stays bedridden, or at a minimum get a home health nursing/visiting nurse to do an assessment in there. If he has had a stroke, the chance to do anything to reverse it is long past, but if he gets belligerent or anything a second attempt to get him to the ER can be made. Hopefully there is some alternative to leaving Mom trying to do what she cannot do.
Our elders who refuse care and push away the hands that would help them do not realize the extra burden and sadness they cause, and sometimes they do it because they just want to keep their independence even if they really can't, while saying things like "I don't want to be a burden..."