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!!!!
While in the rehab/nursing home facility she began refusing to eat, refusing to get out of bed except for her therapy visits. She was dismissed from here because she met her "goals" from the therapists - her hip was fine.
My sister and I moved her further down the way in the facility to a 30 day transition assisted living. At the end of the 30 days she could choose to live there or go home. She refused to do anything. She is down to 81 pounds - never a large woman though. She has bed sores and still refuses to do anything. There is no reasoning with this woman. We had tests done, etc to see if there was actually something physically wrong with her. All that did was make her mad. The transition facility sent her home - they could not keep her for non-compliance. The bed sores would get them into trouble.
Mother is fully aware her doing nothing and eating nothing are the cause of the sores, but she wanted to go home.
So, we brought her home. Now she has home health care three days per week. She is not eating and is still lying in bed most of the day and night. The bed sores are no better.
She will not talk about this at all. Says she knows when she's tired and what to do...leave me alone.
She was so ugly to my husband and me, that we went home and left her for my sister to check on daily. It appears this is the trend for now - mother waits for the home health care to come help her do whatever minimum things she needs done and put medication on her bed sores. She lies around most of the day and eats a few calories of nothing good for you per day - apparently enough to keep her alive for now.
This is NOT the mother I've known all of my life until the last ten years or so. I have no idea who this woman is. I have no idea what her plan it.
I have no idea what to do. She is an adult and has her mind (although it does sound like she's lost it as I read back through this), but she hasn't. She is fully capable of talking, knowing what's happening and manipulating the situation.
As I said, I have no idea what to do.
Thanks for listening.
I think I'd also call the MS Society office in your area and ask for advice and if there are any resources that might be available to your mother.
Gosh, this is tough! Do your best, but also keep in mind that this is Not Your Fault. No guilt, please!
One place you can turn to besides the APS is the health department and any other resources within the area that are available for these types of cases. I'm not sure what all is available over there, but I would definitely call around and keep bugging people until you get some leads like I did. Each area is different so each area will have different things to offer. However, definitely the APS and the health department for starters, and go from there following each lead your given and actually show up at those places. Even if they'll are of no help, they'll eventually get sick of seeing you and eventually someone will open up and become useful or give you some useful leads. Persistence always pays off, at least in most cases.
I am an only child and can not live with my mother. No other family is available. She is a loner - and has no friends or other family nearby. She prefers to remain in bed most of the day (stays in bed till nearly 11 every morning, plus takes 1-2 naps a day).
She refuses to give me power of attorney thinking I will "put her away" in a nursing home.
I am mostly concerned with the urine infested carpets. What can I do? Can I get someone to come to the house to report this is a health risk? Please help.
* Giving them enough rope means backing off and completely leaving them alone and letting the problems reveal themselves to others. I'm glad I did this because had I not, I never would've gotten the help I did at long last.
Another thing to consider is how some people have even given up the checkbook because more and more places no longer take checks. More and more people these days are relying on plastic and less on the old ways of doing transactions.
If your mom has been in her place for a certain amount of time, she's probably used to the place and just doesn't want to move, this is normal if some people are longtime homesteaders of many years or even a lifetime. Trying to pressure someone to move if they don't want to can actually make them more stubborn, causing them to dig in their heels even deeper and even resent you.
Another area of consideration is possible trust issues, which is probably why she doesn't want anyone taking over her financial affairs if her bills are already being paid with no issues. I don't know how she pays her bills, but as long as they're paid, don't worry about it. She probably knows that as soon as she gives access to her bank account to anyone, she probably has the common sense enough to know what can happen, and I don't blame her for trying to protect her financial stability, so would I. People really do need to protect themselves as they age, and she probably knows she's vulnerable if anyone gets a hold of that bank account. I wouldn't be a bit surprised if she's hidden any documents she may have around the house (if any). Some people with a safe will lock those documents in the safe and hide the key or even keep it on them as a way to prevent anyone from finding that key and getting into the safe, I don't blame them. Many times elders may go to great lengths to lock everything up so no one can find it. However, in the case she may have gone paperless, you probably won't find many (if any) bank statements laying around her house, she probably has more sense than that (if she's well organized).
Keeping one's own independence is something everyone wants, no one wants someone coming along and taking their freedom. This among other reasons is why you're facing a fight, and if she still happens to be competent and still in her right mind, your best bet right now is to just back off and leave her alone and let her be.
If you really want to help her, you may be observant as to how well she can actually move around her house. If she can't navigate her house all that well and it's not cluttered, you may offer her a wheelchair to help her get around if she can't walk that well. If she doesn't need a wheelchair, you might try a walker and see if she'll use it. I would definitely try to find clever ways to support her right where she is in stead of trying to change her, because trying to change her and force her to do what she doesn't want to do is only going to make her combative, and her combativeness is a strong hint to just back off if she doesn't want or need your help and you try to force her. She's probably getting to a point by now where she's starting to resent you.
Instead of trying to force your will on her, why not just support her and love her right where she is until she is ready to make a change? This would be far more appreciated than trying to force someone into something they didn't want, and this will definitely cause bitterness and she'll most likely hate you. Forcing your will on her is actually destroying your relationship, this destroyed many relationships, don't do that if you really love her. If you love her, let her go and live her life. It's been said that if you really love something, let it go. If it returns to you, it's yours. If it doesn't, it never was. I think your best bet right now is to just take your hands off of the situation and step back to see the big picture. In fact, it's probably good for you to take a break and leave her alone for a while, just stay away for at least a few days. It'll be hard, but not impossible. This is one of those situations where you may have to let whatever happens happen. I was very close to having to do this with my foster dad when he developed dementia and there was no outside help to step in and intervene. I really didn't want this to be dad's fate, I just didn't want to walk in one day and find him dead. What I did was I stepped back and started reducing my visits to a point. Not having a car was actually a good thing because I won't go out in the bad weather, especially not during winter, and I especially more so won't go out when it's too cold being asthmatic. This really helped me stay home and away from him because not having a car during bad weather and even winter turned out to be a good thing because it D
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..."
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...
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.
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.
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.