I have been taking care of my father who has Stage 7 dementia with the help of caregivers. It has been very hard taking care of him. Mother, who has been in the hospital for the past seven weeks, will be coming home next week. She has mobility issues but is of sound mind. I feel so inadequate in taking care of both of them. I will need more caregiver hours but I don't really know what they will need and when they will need it. Care is so expensive I want to use the money wisely. I feel overwhelmed and my mother is not even home yet. It cost several thousand dollars to hire caregivers while I was working and needed the help full time. I no longer work and can devote more time to their care. My mother laments that she is miserable and that all her money will be gone. I try to do the best I can but feel that no matter what I do it will never be enough. Any advice you can give me would be very much appreciated!
I agree with Hugemom--- explore EVERY possibility for additional assistance. Seek guidance from the social worker. But first I would do some soul searching. Does the current living situation work (at all) for this scenario? Would senior housing be a better option? How about assisted living? By the time I added live in aides to the costs of my Mom's place, it equaled the cost of memory care for her.
As an aside, the price of non-aide help is much less than aides. Can you bring in lower paid help to do a variety of things such as laundry, housekeeping, companion help to reduce aide time? Only you can asses that. Also, the cost of live in help is less than blocks of hours for aides. Can you put your dad on hospice? That typically brings in an aide for 2 hours a day/5 days a week. At NO COST, via Medicare. In addition, it brings nurses visits, spiritual care etc. For my friend it also brought in volunteer help.
Keep us posted.
There's something really wrong with this picture.
Yes, mom is "of sound mind"; that doesn't mean that she is the only one involved in deciding whether she comes home without rehabbing first.
"Mom, I can't do this" sounds like the beginning of the conversation that you need to have with her.
Don’t panic. Harness that energy into finding help. You can also find a lot of agencies who will offer help by searching the Internet.
Long story short...After only 2 weeks of home health nurses HE asked to return to AL!
A. Does your mother have a PCP, or internist, or does an orthopedic doctor oversee her treatment for mobility issues? Contact these doctors, explain that she's being discharged but that you think she needs additional therapy, but definitely needs home care.
B. Any one of these doctors can script for home care as well as assistive devices. They probably have specific ones with which they deal and can handle this for you. Don't try to locate the assistive devices on your own; you'll probably need a script for any that are paid for by Medicare, and that's another step to take. Let the doctor's office act in a turnkey manner for you.
C. The social worker should ensure that you're given discharge instructions. I wouldn't rely on them being completely accurate, but you are entitled to them. You'll need to know what medications your mother has been on, to provide that data to home care staff.
D. The attending at the rehab facility is also supposed to give you scripts for meds that need to be continued.
Thee are only short term solutions but would at least provide some support until you're able to work out longer term arrangements.
Keep documenting, privately.
On a longer term basis:
1. It seems to me that this is retaliation, pure and simple, reflecting that this facility does not want to address the care level of which you complained, even though your complaint was legitimate.
2. I think they're remiss in not ordering equipment. That is the rehab facility's responsibility, I believe. The attending doctor also should be scripting for home health care. The facility is, I think, noncompliant with the functions of a proper discharge.
3. Has anyone told you that your mother has "met" the goals which they've established, and that's justification for the discharge now? If you're comfortable with challenging them, ask to meet with those who created these goals and claim that she's met them.
4. If they don't cooperate, wait until you've found a place for her, and if you want to pursue it (and I would), hire a medical malpractice attorney just to order the records. They can get them easier than you, although it's not cheap.
5. This will help document (unless the facility alters the records, and that's a possibility) the issue of meeting goals, the failure to provide required personal attention at one point (although someone will come up with an excuse - short staffed, etc.) and perhaps other issues which you can use to report the facility to your state ombudsperson, who can initiate an investigation into the facility.
6. I think the issue is not just the apparent one time negligence but the retaliation of discharging her, refusing to order equipment or help find home health care. It's a continuing noncompliance with the functions of the facility.
7. Contact your state ombudsperson and get him/her involved, if for nothing else to preserve your mother's safety until she's somewhere else.
8. If your mother was in a hospital prior to going to rehab, let the hospital admins (who SHOULD filter the information down to the discharge planners) that the toileting event and early discharge occurred, and alert them to the fact that this facility doesn't meet standards (especially if it claims top notch care in any written publications) and shouldn't be recommended for other patients being discharged, at least until the situation has changed.
9. There's obviously no guarantee that the hospital will change its recommendations (as one outside person recently told me that the hospitals are often "affiliated with" or even own a rehab facility). But the hospital should be aware that this rehab facility didn't meet standards and should be aware of its own role in referring patients.
(As an aside, before we had any idea of the intertwined relationships between hospitals and care facilities and companies, one hospital discharge planner recommended a particular rehab facility. We didn't chose that one, fortunately.
I later learned from someone in an ombudsperson agency that many of the patients who went to that facility never came out, alive. Granted that could reflect the patient's own condition, but an unofficial nickname had been developed for that facility, and it related to death.
A hospital discharge planner is still recommending that facility, even though I told her what I'd learned about it. To my surprise, she even acknowledged being aware of its bad reputation.)
10. You can also notify Medicare of the failings of this facility; Medicare monitors facilities to which it provides reimbursement. Perhaps your mother isn't the only one who's been neglected, and if so, Medicare has the power to address and force changes.
Not germane to the immediate issues, but something I've wondered about as I read about a situation like this:
I don't know without researching whether published and disseminated brochures fall within the guidelines of false advertising, but if they do, a lot of companies and agencies would be in trouble with the FTC. It's probably too big a task for any individual to undertake , especially with what you're facing, but it's something I've been considering since trying to find competent, truthful private duty companies.
But this kind of issue is something an aggressive law firm could undertake under a qui tam action, and I'd love to see it happen!
Wishing you strength demstress...you will find it here, believe me, I "was" a hot stressed out mess!!! 💜