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caretobeagiver Asked May 2016

How to be prepared for false accusations from a vindictive sibling about my daughter's care?

Daughter is 33 bedridden and has four kids that I take care of daily.

Singingway May 2016
My advice: 1. Make sure your caregiving space looks orderly and clean. Your supplies for caregiving are neatly stacked and well-stocked. 2. Have a journal and large wall calendar where you document your caregiving. Doctor visits. Lists of meds. Daily and weekly schedules. 3. Have a relationship with a trusted outside entity, whether that is a nurse or bath aide you pay for yourself, or an agency. Having outside entities coming in, helps them to know you are not operating completely on your own or in secret. 4. Know that if there is an accusation they MUST investigate it. It's their job. It's your job to show them demonstrably, that the accusation is unfounded. 5. Invite the investigators to watch you at your caregiving tasks, feeding or cleaning or wound care, etc. Talk about how you figured out the best way to do it.

Rainey69 May 2016
I have a hard time believing your other children cannot understand that this is your child and if this had happened to any of them, you would also do the same for them. That's a Mom!!!! I caregive for my Mom and my other two brothers do nothing to help. Instead, I get accused of taking her money, etc. Not true. They have no clue what I go through caring for her dementia and other health issues. All they care about is what they think they may not be getting out of her moneywise when they do nothing for her. Have you explained you would do the same for any of them if they were in that situation? It never ceases to amaze me the vindictiveness that is possible from families, that is why I do not even speak with my brothers unless I have no choice. I know if anything had ever happened to me where I was bedridden, my mother would have done anything and everything for me that she possibly could. She would have for any of us. If they can't see that, then I would tell them to grow up, step up or mind their own business! I am done caring what my brothers think of me, I sleep like a baby at night knowing I am doing the right thing, they can have it on their heads when she passes that they did nothing to show her the gratitude for all she did for them.

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JoAnn29 May 2016
When someone criticizes, tell them if they think they can do a better job, then go for it. They will back down. And the person who said the person is doing it grudgingly, maybe someone else should step up.

texriner1 May 2016
Unfortunately I experienced the same kind of treatment. I cared for my boyfriend for a decade. He had a TBI from an accident 40 years ago. He was wheelchair bound, paralysis in right hand, had a tracheostomy and seizure disorder, was a stroke victim and dementia at 55. We lived in his hometown 1500 miles away from my hometown. First problem was his entire family that criticized everything I did for him though they NEVER lifted a finger to participate in his caregiving. When he had the stroke his family showed up the first day he was hospitalized and never came again in eight weeks of rehab. I would pick his mom up twice a week and take her with me to visit him. Once he was well on the road to recovery we decided to move to my hometown to be closer to my mom who I also cared for and TO GET AWAY FROM all the conflict his family was creating. None of them EVER came to visit even when I offered to by their airline tickets. But the distance didn't stop there non-stop criticism of me.
I did everything for him 24/7 365 days a year. I had no life of my own. Three years into the dementia phase he became very physically, verbally and emotionally abusive to me. After much discussion we decided to move him to an independent living apartment with assisted living and nursing home on the premises. I still went to his apt seven days a week to care for him. He constantly called APS and the police on me reporting events that never happened. So I turned the situation around and became very close to two of the APS investigators. I communicated with them on a regular basis to report issues related to the home healthcare agency I.e. A caregiver who stole all his money, a nurse who was not proactive about anything and left him with no motorized wheelchair for four months etc. I used APS as an advocate for better care for him. They helped me get meals on wheels for him, they got his wheelchair fixed, they sent a person to help him with his finances among other things. By doing this they realized I only had his best interest in mind and I would do anything to help him instead of harming him. Soon they were calling me weekly to check in to see HOW I WAS DOING and asking what they could do FOR ME. They were very compassionate and even told me they thought it might be best if I just walked away because I was way beyond burned out and the stress was taking a real toll on my physical and mental health.
Eventually his nasty family convinced him to move back close to them. I tried to convince him that none of them would take care of him and that they would just put him in a nursing home and forget about him. He scoffed at that notion. One day I was there taking care of him and when I called the next day his phone was disconnected and he was gone. None of them knew the state he was in and as I predicted they sent him straight to a nursing home and will not allow me any contact with him whatsoever. I could handle all his needs but it was the non-stop criticism from his family and the scrutiny from the police and APS that made things unbearable. Sucked the energy right out of me. The only way I am finally moving forward is the belief that I did the very best I could and that the only recognition I need is from God who knows the truth. Who will send blessings my way for being a loving and compassionate person. Who knows I put someone else's needs in front of my own. It was a blessing from God that he is 1500 miles away and the job of his care is in the hands of someone else. Do I wish things had turned out differently? Of course. But I am slowly learning that my life matters too and I can't wait to see what the future holds. Just when you think things can't get any worse . . . But for all loving caregivers who don't get recognized for there efforts remember that someone above is taking notes and will never forget your struggles, what you gave up for the benefit of someone else, why you lost all your hair due to unimaginable stress etc. God bless you for all you do. Better things await you even though you cannot see light at the end of the tunnel at this moment.

CaredForParents May 2016
I am sorry to hear of your situation. Understanding your daughter is bedridden, you don't mention her mental capacity. It seems if she is cognitively competent she could speak with this sibling and an attorney/notary for an affidavit (audio record, or video is especially powerful) that she is well cared for and chooses you to be her caregiver. I'm hoping she has also prepared a will and assigned a medical POA and DPOA (property/bills) should she become mentally incapacitated even for a short time. If she recovers, she gets to make her own decisions again. A lot of people hesitate to assign POAs because they think they are giving up all control as soon as they sign. A tough discussion for some, but realities for all even the young and healthy. Otherwise, documentation, doctor visits, in-home health reports. I went to the main office of our in home health provider and they were helpful with copies of detailed records of visits. Our issue was with state/county services, but no fun either way. We ended up with daily logs and 24/7 video/ audio which was a help in many ways. Relatively inexpensive DVR systems at Amazon and Costco. It also let us capture some precious moments of my little girls cuddling with him and to make sure caregivers were treating him well while I was at work. Placed inconspicuously, we all ignored the cameras within a few days. The same HHS folks who came to assess after we got a judge to order it were not pleased to be on camera and magically got a whole lot more gentle with him. Funny although he wasn't good with most short-term memory of people, he sure remembered them and called them out anyway when they re-introduced themselves "Sure, you were the one who yelled at me." It's private property, but still I put a small sign on our door that says the premises are under video surveillance. Our caregivers by then were all excellent btw and said they found it comforting so in case something did happen we would know it was not their neglect.

plzdnr May 2016
I have over thirty years working with families in long term care, but this situation sounds like a nightmare for you and is a variation of family dynamics that I have limited direct experience with. So, my comments will be based on basic principles. It appears that you want to keep a relationship with this sibling, which is always understandable, but at some point you will need to establish a boundary to his/her involvement, perhaps based on a "need to know" basis, perhaps expanding to a place that you can say something like, "I appreciate your concern but I really could use some assistance with __________.", with the hope of co-opting this energy to a more functional purpose.This MAY both open the way for the sibling to see what you are accomplishing with your family and some (I'm sure) needed support. Second, have you given thought to what this sibling wants from these accusations as well as WHY? You may not have the answers, in which case I would encourage some counseling. (If you can make the time for counseling, it would be well worth it.) Understanding the other person helps tremendously to put the situation into a manageable perspective. You can't change the other person but you can change how the other person affects your thoughts and feelings. Everyone needs to be the recipient of compassion, even if they do not give it in exchange.
Finally, YOU are the parent and grandparent of YOUR family. I would encourage you to not let others influence how you do what you know is best for your immediate family. (You probably already know this but sometimes it's good to hear others say that they respect your role as parent.)
Whatever suggestions you receive here, you will need to develop your own strategy. May God give you the grace to endure and your family prosper.

GrannySmith May 2016
One of the most common problems with being a caregiver is to be falsely accused of whatever enters the minds of other family members who are not involved in helping or caregiving, but some love to talk and throw out accusations and threats, after all, it's much easier to throw out accusations, than it is to actually step up and do hands on caregiving, just saying. I've had a family member actually say because they came out and sat and visited, that was their helping effort. Sometimes this type of behavior may come from guilt or even their own embarrassment of what others think of "them" for not doing one thing to help a caregiver or the loved one who needs the care. My sibling has been given plenty of opportunity to be involved with helping, but not a thing.

With threats, which I get often as well, you have to do absolutely the best work you can as a caregiver, your situation is different in that there are children, I would be concerned that it may be the children that someone feels more concerned about. You need to have all your paperwork in perfect order, doc appointments documented, medications documented, diet documented, a care schedule/journal, documented. I keep a daily caregiver journal for my parent for my own use, the daily care I've given, everything, I also keep it in case I end up in court. Save all receipts for everything bought for your daughter and your grandchildren, make copies, I do this weekly. I would also keep a caring schedule for the kids. Keep everything routine and daily as much as possible. Keep the home clean of course and clutter free, or make it so. Hire a little help now and then if you can, with cleaning, or a health aide for your daughter to come out once a week. If the kids are old enough for school, all of that has to be good and in order. I found the easiest way to do this is to treat the caregiving like a job. Document everything, and have that daily routine that you stick to, the people in your life you care for, like children, do better when everything is on a schedule. Take pictures or have someone take them of you and your daughter and your grandkids and your activities which you should anyway, but those memories also are proof to the environment lived in. I don't know how she is, but if you talk, watch TV together if she sits up, etc... document it in photos. Invite other family members over to visit or have dinner. When others are aware that everything is good, it's hard for someone to make false accusations, gossip does less damage that way. Overall, there is nothing you can do to stop someone from talking about what they think, or what their opinion may be as aggravating as it is, unless it's harming a business you may have.

Side Note to Others: It's so easy to tell a caregiver from those who have never lifted a finger, caregivers step up and good ones will even step up for others when their caregiving is done, often they end up being health aides, paramedics, nurses, I've seen this progress with young caregivers. Non caregivers have no concept of what is involved in caregiving and the reality of it, no one does until you've been there. I recommend to anyone who has complaints about a caregiver, that you visit a nursing home to get a true feel for what it's like, at least do that or volunteer for a week at one. The loved one is likely getting far better care at home. Either way, there is lifting and transferring, I lift a 230 lb. man daily and transfer him to his wheelchair and to his chair and to his bed. I change diapers, manage 8 medications daily, doctors appointments every other month, flush pic lines, empty urinals, calm down fits (my parent had security called on him several times in hospitals and in the one nursing facility he was in, I'm the only one who can calm him down and distract him). There is so much to caregiving than non caregivers are only assuming about. And there is a good thing about threats, social services, etc... are familiar with proper caregiving, they know it when they see it, and they've seen some pretty bad stuff too, even in nursing facilities, so if anyone has a need to complain about a caregiver, they should be sure they understand what it is they're complaining about to not look like a fool. Various service outlets are capable of filing a complaint against people for excessive non viable complaints on a caregiver. Yes they can do that in some states, it's the same as calling in a false crime to police, it also paves way for the caregiver to file a restraining order against the person, since they're being harassed by false claims. Just saying. Be thankful that people have someone to take care of them, be grateful for that, visit and love the people in your family.

Lorencito61 May 2016
Listen, where there is smoke there is usually fire. I have a sister that is begrudgingly taking care of my mom. We have durable- power of attorney. She has literally tried to shut all of the family members out. She lies about mother's condition. She has made mother bedridden because she wants to hurry the dying process. As I have told her, it is not up to her. It is God's will. She has put distance between the family and her. This was done by design. You need to find common ground. You choose to be a caregiver and if you are going to do the job, you should not be operating in secret. My sister wants to be seen as the good daughter and wants the credit for taking care of mom. She does not think that we have any rights to ask about our mother's help. Be open and honest!

anonymous310342 May 2016
If everything she says is false and she is not willing to help when you need it simply put her on time out. But this also means you can't complain to her. A while of no communication is necessary.

rich985 May 2016
My sister called APS and i had 17 visits in one year and 13 visits from from the sheriff's office So get ready to fight. Living year of h3ll but i finally won.

pamstegma May 2016
Did this person call APS? Be honest and forthcoming when the social worker comes to visit you. And get a lawyer to advise you.

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