My family has decided to transfer my mother, who is in a rehabilitation center, back home. The therapy has been very slow, we have practically had to beg them. The speech therapist stopped the therapy because, according to her, she was very aggressive. We also have to note that at that time my mother was being medicated with anxiety medications, so she was not fully “available for therapy.“ One of the reasons we have decided to take her home is the negligence of the CNAs, not all of them obviously, but many times I have to go out and look for them to change it. For example, today I was surprised that she did not have her back sided wedge, or that we found it poorly accommodated. She suffered a stroke 8 months ago and since has been connected to a feeding tube. She is semi-paralyzed on the left side, because she can now move her left leg, as well as her left arm, and the fingers of her left hand already have certain mobility. One of the reasons is that she is afraid of being left there alone, another reason is that she always has different nurses which is bad because there is no constant monitoring and NOT ALL NURSES DO WELL I have complained to the social workers and directors, but the situation does not change, that is why we decided to move her back home. There she will have family members, including me, who can take care of her 24 hours a day. My question is whether I should start the process of transferring her with her primary doctor or with the rehabilitation center, which I do not have much confidence in. I would like someone to advise me. Thank you.
But that is unusual. Usually in this day and age the mode of transfer is Hospital (and hospitalist MD) transferring to rehab, which has its own doctor.
I would contact Social Services at the rehab (or "discharge planning" of "case manager" if they claim not to have social worker on site.)
I would tell them that you are taking her out of rehab "against medical advise". They will warn you and perhaps even "threaten you" that there will not be coverage for her now or in future, and etc. These are basically baseless threats. They won't want to lose a client for whom they are getting Medicare or Medicare/Medicaid funds.
I would ask that they scan into her chart basically ALL OF YOUR complaints and attempts to remedy your mom's care, and I would be certain that you put in this brief note that you feel she is UNSAFE in their care due to the listed things.
You will be asked to sign an "against medical advice form" or they may call it an AMA form.
They will ask you if she has 24/7 care at home. If not they MAY investigate you and may ask APS to visit to see her in home care, claiming that they cannot make an unsafe discharge.
I am assuming that you have been doing 24/7 care in home and feel up to doing this, because if not I caution you NOT TO DO THIS.
Every person ended up in a nursing home soon after if they didn't pass away.
Even professional medical people end up placing their loved one in such a situation.
You and your family can still be caregivers to your mother, but do it in a care facility. You and your family can be with her all day. You can be her advocate and make sure she gets decent care. See if she's in a facility and you or a family member needs help with her care, there is staff and specialized equipment that a private house does not have to get the care done.
My father had as stroke and was in similar shape to how you describe your mother. I placed him because I knew that eventhough I took care of people in his condition for 25 years I never lived with them and had to be responsible for their every need 24 hours a day.
Please explore some other options with your family for your mother before taking her out of the rehab facility. Tour a few different LTC facilities before you make this decision because you're more likely than not going to be in over your head here.
A couple of questions before you decide to bring your debilitated, invalid mother home.
1) Do you and your family members have any training or experience caring for a total invalid in a private residence?
2) What happens when your family bails (and they will)? Some family member can't do their turn because they have to work. Or someone's kid has a soccer game. Or they want to go on vacation. Or they just change their minds because don't want to do it anymore. I've watched this one play out with extended family caregivers for 25 years.
3) What's the back-up plan for your mother when they do bail and the excuses for why they can't be there start happening?
4) What's the plan if (God forbid may you live a long and healthy life) something happens to you and you can't take care of your mother? No matter what happens other than her actual death, her care needs will have to be met every single day. 24 hours a day, 7 days a week, 365 days a year. Can you manage that?
Please rethink this decision. Have an honest talk with your family members. Let them be honest about if they really want in on this. Don't judge or guilt if they say no to caregiving.
Do you know how to walk her with a gait belt? Are you aware of ways to get her and her equipment in and out of a car for the frequent doctor appointments that will be necessary? Do you know how to dress her? Bathe her? Change her Depends? Especially when she's resisting your help? If she's aggressive where she is now, she'll be aggressive toward family if you're her caregivers.
Mom has a feeding tube. That requires certain expertise for a caregiver. She's semi-paralyzed; do you and all the others know how to transfer her from bed to chair to wheelchair to toilet to car to bath and back again? Can you provide any speech therapy at all?
There's a lot more to good nursing care than making sure mom has a wedge. Before you take mom anywhere, how about you and your family members set up rotation at the rehab place and someone be with her day and night, 24/7? She will have the equipment she needs close by, which she won't if you take her home. Not only will you see what care you will need to provide, but this will give you insight into who and how mom is now rather than the way she was before her stroke. Her brain is different now. Her personality has almost certainly changed due to her brain injury, and it will never be the same.
Home care almost never works long term, and patients don't always thrive when family caregivers don't have the knowledge and experience of professionals.
"...we decided to move my mother back home, there she will have family members including me who can take care of her 24 hours a day."
Many a loving and well-meaning adult child has gone into the in-home care arrangment without understanding just how constant, exhausting and limiting it can be. Have the other family members actually expressed the desire to do this? Have you discussed an actual care schedule with them? Once they understand the schedule demands, and realize it is "ongoing" until Mom passes, they may not be as enthusiastic about it. There's a reason why an entire Care Topic is called Burnout. Just saying to please do not "assume" anything about how her care will go if you bring her home. Do the other family members have spouses and children still living with them? In who's house will she be living? If her own previous home, then there is the cost and effort to maintain that added to the mix. There are lots of things to consider that are not currently apparent.
My MIL is in LTC in a very nice facility on Medicaid. She even has a private room. It's run by a large, national non-profit faith-based organization. It's close to my home and will be the same place my Mom and then my husband and I will got to, without hesitation. Please consider researching better facilities for her first and keeping in-home care as a last resort.
But taking her home to BE the rehab/long term option is a big leap. Please consider a Care Trial.
Ask if you can stay the entire day at rehab, doing all the care.
This will include transfers in/out of bed & chairs. Showering, dressing, feeding requirements, toileting & associated hygiene.
Sometimes what a family expects or wants is vastly different to the day to day reality of such high care needs.
Love is care.
But high care needs, need a lot more than love alone.
What are you going to do when she comes home?
If you are sure that you can take care of her, at least speak with her doctor about receiving home health.
What was the response from the facility when you addressed them about her situation?
Wishing you and your family all the best.