My loved one with dementia is 82 years old. His wife is 78 with poor health. She was admitted to hospital twice this summer. Once for 8 days and the other for 5 days. I was left to care for my dad. There is no help with him. He is incontinent and extremely contrary. He refuses to eat most food. It’s now ensure and candy. He won’t drink water.
I am a teacher and there is NO way I can take off work indefinitely when she has to go back in the hospital. She could need to go in any day. Last summer she was in the hospital from the end of July until October and then went to rehab for PT. She got home in November. Then she was back in the hospital in May again. Dad cannot stay home alone. I cannot stay with him and work. I cannot do this alone. She refuses to get in home care and she will not have him in a nursing home.
His doctor will not answer the phone or return messages.
APS told me she could charge me with neglect if I did not care for him. They told me to call a lawyer. It took 3 days and a trip to find a lawyer who would talk to me. He was hateful and short. He said she can’t charge me with neglect.
She will be back in the hospital and then what am I going to do? APS said I cannot force her to get care. He is very very difficult and contrary. Every word that makes sense is hateful or negative. This is wearing me out. I have worked three days and I am exhausted. I have to help her change his clothes every day. I cover him with a towel to keep him covered.
I cannot take FMLA. I am single. I had cancer and my onco said to avoid stress. I wouldn’t have so much if she would do what she needs to do.
thank you.
Village, I am assuming that you are the only child, and there is no other help?
I have to tell you that I am 78 and well, but that I would in no way be capable of rendering this care.
The Lawyer was correct. You will not be charged with neglect. APS is correct that if your mother is of sound mind you cannot prevent HER from doing what she is. What you CAN DO, and I feel what you should do for your own health and sanity, is explain to your mother that this cannot continue. That the next time she goes to the hospital she will have to order TWO ambulances, one for her and one for your father, because you cannot and you WILL NOT intervene in his care. If she doesn't do it, and is removed to the hospital, then YOU Must do it and say that he is a senior without care because his wife has been hospitalized, and that you are unable PHYSICALLY or MENTALLY to render care. It is then on the EMS to get Dad to the hospital. This is the only thing that will get the ball rolling in getting them care.
Let me tell you Village, as long as you intervene and try to take over when Mom is hospitalized, the "system", APS, doctors, lawyers will be of no help.
This is a tragedy and you must be frantic. You and your Mom must both be frantic. But until Mom gets your dad placement and understands that she must, none of this is going to change, and it could kill both your Mom and yourself before it does your Dad. I am so sorry.
You (or someone anonymous) will continue to report her husband to APS. If no one has durable PoA for him, and the county does agree that he's a vulnerable adult then the county has the authority to remove him from the home no matter what the step-mom says or wants. The county will then pursue guardianship of your dad (and get it). Then the county will control everything: where he resides, what medical care he receives, his share of their assets, etc. Your step-mom needs to understand that this is also what is waiting for her if she doesn't assign a durable PoA for herself (hopefully not you but does she have other children?) It sounds to me like they both have cognitive issues, not just stubbornness. But you don't have any obligation to "fix" their situation. Legally if you're not the PoA for either of them you can't do anything, so you will need to let it all go emotionally and mentally. I understand this is easier said than done so I'm not saying this lightly. I wish you all the best and peace in your heart as you let go.
You don't say what is taking your stepmother to hospital, but it does sound as if the time has come when it's no longer any good expecting her to come up with sensible answers. She can't care for her husband. She - whatever she thinks - can't decide that you are going to care for your father when she isn't there. But it probably isn't fair to expect her to be knowledgeable, practical and reasonable about the alternative solutions; so do the research yourself.
Let's assume she's soon no longer able to look after herself, let alone him too, and there will be change come what may. What do you see as the solution for his care? Have you got as far as finding out what agencies (or what facilities) might offer the services they need?
If she is competent, the decisions about care are indeed hers to make. But that does NOT mean that she can decide that YOU will be the care provider. Prepare a little folder/information sheet/fact file about resources (telephone numbers, contact names, summary of services) and have it ready for next time. She can choose A, B, C right through to Z; but your name does not appear on the list of possibilities.
Probably repetitive, BUT do NOT run to help if/when she goes back to hospital. She/they can make their own poor choices, but you can make your own decisions too and you really don't owe anybody anything.
Is your dad incompetent? If so, get that in writing. If he is and it is not documented, try to get him evaluated. Knowing the town in which you live is not a test of competency. If he is declared incompetent, make sure to share this info with the ambulance company, local ER, etc. Get things set up and taken care of BEFORE an emergency happens. Which it obviously will.
Boundaries. If you don't want to take care of your dad, you do NOT have to. Don't do it. Force the issue. It is THEIR problem. Not yours. You can help make a solution by not allowing her to bully you into what she wants you to do. No more of that nonesense.
If she is demanding you care for him you say "no, I can't possibly do that".
Is she using Fear, Obligation and Guilt (F.O.G.) to manipulate you?
Have you read the book "Boundaries" by Townsend and Cloud?
If EMS thinks that knowing the name of the town he lives in makes him competent, I would be on the phone to the Area Agency on Aging and APS to get my ducks in a row for the inevitable "next time".
Additionally, I would not show up the next time stepmom is taken to the hospital. I would inform the hospital SW by phone that your dad is alone and that you are far away.
And remember, if "officially" dad is competent, you have no obligation to provide care for him, do you?
Your father has a wife. It is her responsibility to care for her husband. I am with the lawyer, APS can not make you take on the responsibility of Dad. I would call them and talk to a different SW. Explain your situation concerning your job you cannot quit. Tell the SW that ur father's wife is making it hard for you to get caregivers into their home. You feel when she is hospitalized that Dad needs to be put on respite care or permanently put in LTC because his wife is not able to care for him. Your hands are tied. Ask if it would be possible for APS to evaluate their situation and offer resources available to them. Have them explain to her that she needs to hire the appropriate people to care for them. That as much as you would like to help, you need to work. If they again say you can be charged with neglect tell them you have spoken to a lawyer and he says that is not true. There is no law that says a child needs to care for a father. Especially, I would think, when there are funds that can be used for their care.
I really don't understand how a wife can't be charged with neglect but a daughter can. I would ask APS what would they do if you were in another state or not didn't exist.
I agree that I find it hard to believe that you could be charged with neglect. I would also suggest that you speak with someone else from APS.
Do you have any step siblings that may be able to convince Step mom that she needs help?
Another resource is your local Council for Aging Services. They have lawyers and others that can advise you.
You tell us that Dad is only taking candy and Ensure. No water! This is cause for great concern.
This sounds horrible I know, but are you sure that the reason Step mom doesn't want help isn't because she's ready for him to pass? Red flag?
Perhaps the next time she goes to the hospital, call 911 and have Dad taken to the hospital. Malnutrition! If he is due to be released before her, you can refuse to pick him up. They will need to send him to skilled nursing.
Sending prayers your way!!
On the other hand if she does end up in hospital for months that’s the perfect opportunity to get APS to take charge of the situation.
When my Dad needed more care than Mom and I could provide we hired a caregiver to come to the house. I know you said your step mother was against it, and so was my Mom at first, but the caregiver was wonderful! She took great care of Dad and of Mom too. Within a couple visits she became completely beloved and was at Dad's side with the family when he passed.
I might suggest you hire someone to come over and meet Dad and Stepmother, introducing her as one who can help when stepmother goes to hospital again. You can explain to stepmother that YOU need help and if she will not arrange for it, you will. I'm sure a caregivers value will soon prove itself to your Dad and stepmother.
Best of luck to you. My Dad just passed this week and I understand how trying dementia can be in the best of situations.
I would contact them again and if given the same crap, ask for someone else, a supervisor, someone up the food chain. I'd start with the fact that even when she's home she isn't providing proper care for your father. Stress that you are concerned for his well-being, esp when she's hospitalized. If ANYONE starts that crap about you having to step in, clearly state you have legal advice stating you AREN'T responsible and CAN'T be charged, but also state that due to being employed you can't provide the care he NEEDS AND that SM won't listen to reason and refuses to secure help for him. SHE'S the one who is being neglectful, even when she is home, and THEY need to know this. Demand that someone is assigned to this case and fully assesses the situation.
Meanwhile, a quick search only showed 1 Elder law near you, but there are more - they aren't close (1+ hr, some 2 hrs or more), but I would try contacting more of these attys:
The link I got was too long, so Google search "elder attorney WV", then click on "More Places" under the list provided by the first search. For me this showed a map and a list of 13 places (some are the same law firm, just other locations.)
Have a list of statements and questions, such as:
Clearly state that your father is not competent and medically frail.
State that your stepmother refuses help, but has frequent hospitalizations.
State that SM doesn't provide proper care even when she is home.
State that SM won't consider placement.
State that you can't care for him.
Ask what options there are to ensure he is properly cared for.
Ask what options there are to ensure he isn't left alone.
Even if she or you have POAs, these aren't enough to make decisions for placement, unless the document is explicit enough, which it likely isn't. POAs are mainly for allowing you to make financial (or medical) decisions, signing paperwork for the person, etc when they are not capable or competent. We had all those documents before they were needed and when mom wouldn't consider moving anywhere, the EC atty told me we couldn't force her. He suggested guardianship, which is costly and takes time. There was no spouse as dad had passed yrs before. The facility we chose wouldn't accept "committals", which are those under guardianship. They told me to just "get her here, we'll take it from there."
I note that WV has filial laws, BUT those are mainly focused on ensuring that children of those who need care provide finances, if they can (these are not often invoked.) The point here is that filial laws have nothing to do with charging you if you don't provide the care. Also, since your SM is legally the next of kin, SHE would be the responsible party.
Start by contacting APS again and be somewhat forceful - not nasty, just don't take NO for an answer. Express your concerns not only for having him home alone when she is hospitalized, but also being neglected when she is home. If they still refuse, you can mention that you are seeking legal representation and will have an EC atty contact them if they refuse to provide any help. Meanwhile, do that search, talk to as many as you can and hopefully at least one will be useful! If nothing else, you could file for guardianship. You may have to front the money to hire one, ask if you can get reimbursed later, once he has proper care and their finances are split. I would think yes, esp if they grant guardianship to you. Being guardian doesn't mean you provide the care. Takes effort and time but you would be the control. You can also let the state assume guardianship.
However, with all that said, bottom line is you prefer st/mom hire someone when she cannot be there. She is considered his primary caretaker, so if APS is going to go after a person for neglect, I'd think it would be her and not you. Maybe it's time to turn the tables and send APS to her find out what the plan is if she has to be hospitalized again. If you find out when the visit is planned, be there to be very clear that you are unable to take off so much work and would be happy to help stmom find someone now to do a few hours each week and expand hours if st mom can't be there. Then you could start looking for the help now to cover the clothes dressing and other things stmom needs help with each day - get the ball rolling, so to speak. (I say all of this assuming there is money to pay for his care - if not, if you are on his health release forms for his doctor, make an appointment and go see him yourself. He might be able to order some in home health services for him. )
"She DOES care for him at home. I don't know why people keep thinking she does not."
It was implied by the various post replies you made that she really doesn't provide the care - seems like you do more. Just not wanting to spend any money to see that he gets proper care would imply that as well. Leaving him to his own devices when she is hospitalized isn't exactly caring for him, now is it? If you were indisposed, what would happen to him?
"To be honest, I don't know where you got where I live, and it is a privacy thing. I don't like how you announced my state. You should not have done that; it was not necessary."
Although it is no longer there, your PROFILE listed it, so I wasn't posting anything that wasn't already available. I am not a mind reader and have no clue who you are so there would be NO way for me to figure that out. I only listed the state, but the profile had the town as well, when it was still there. If I could still edit the comment I would take it out for you, but edit is no longer available.
Sorry that we annoy you, we ARE only trying to help. Best of luck to you.
Take care of yourself.
To elaborate on my previous post,
You had expressed how exhausting it is to take care of your Dad. Imagine being 78 and in very poor health and being his caregiver.
My Uncle was caregiver for not only the Aunt, but their 61 year old mentally ill son.
Although he never shared with me what was going on , whether it was pride, shame or simply not knowing what to do, I found out that he quit taking his meds 5 months before he passed.
I am in no way suggesting that your stepmother is heartless or cruel!
It could be that she truly loves your Dad, but doesn't know what to do. She's most likely exhausted too! Maybe out of desperation, intentionally doing nothing may seem a plausible solution in her mind!
My hubby is a Doctor. When I told him that your Dad was only taking candy and Ensure, he agreed that was concerning.
Hound the Hell out of APS!
File reports!
Take pictures!
Depending on the laws in your state, record conversations with your stepmother!
You can fight this!!
Don't give up!
((((Hugs))))
If u live in the home or not with them, consider calling APS yourself that you are unable to provide for his care in your stepmother's absence and u need help.
U could hire private sitter to come into the home while u work but financially u are not responsible.
If u do not live in the home, u have to tell stepmother she has got to pay some because you cannot.
If she is out of hospital, I would put it in writing to her 5hst she has to have a plan for him if she is hospitalized.
Wishing u well
When you go over, be friendly and give appearance of "enjoyment".
The hospital must be "eating" the long term bill. Souds like they are doing what the patient wants. She or He can not get into rehab without valid medical diagnosis or rehab will not get paid.
If He is refusing care and "competent" you can not be sued for neglect. He must de-compinsate to being a danger to himself. If you need to know what that means ask the A.P.S. worker what he looks for. Excuse my cofusion on He or She. What I am saying applys for both. If he is refusing to drink..it will not be "long" and His wife will have to call the ambulance or coroner. The pain for you is seen and felt. You have to "let go" and still make contact for your own sanity.