I'm an EMT and my mother was living at home with my sister. My sister is no longer able to give mom the care she needs. So she is in a Skilled Nursing Facility after being discharged from the hospital a few days ago after MULTIPLE recent falls. We were all excited (mom too) about her moving into long term care after SNF. I have been there the past 2 days and the 1st day ( I was in street close) was AWFUL!! I wont go into details but I was ready to pick her up and take her home. I was tired and irritable so didn't fly off the handle but I did take notes for future reference if needed. Day 2 I went up there in my uniform and you would have thought The state inspectors walked in!!! EVERYBODY was coming back to moms room to see what they could do for her................
I am REALLY struggling because I KNOW that I can take MUCH better care of her at my home. But I'm concerned about caregiver burnout. I take care of people at work for my career (EMS) so coming home to care for her concerns me. My other concern is my dogs. They are older and this would be a big change for them. And NO they will not be going anywhere!! I can separate them from Moms room/bathroom.
My thinking is that if I have to sit at this facility in my uniform when I am off all day anyway, she might as well be at home with me where we can both be comfortable.
With her income SSI I can put up cameras and hire a CNA and or Sitter to come when I am at work. I am also sure that her home health visits will continue with Nurse, OT, PT, and an Aid 3 times a week.
I'm afraid I may be making this decision out of my need to rescue ie: EMS. But I'm also looking forward to bonding with my Mother and having no regrets when she passes.
So this is where I'm at and I need to make my decision withing the next 10-20 days (length of time her insurance is covering nursing home SNF.
I would appreciate any advice or sharing of your experience.
Thanks
Tiffany
I am sure that you need to decompress after you get home. You have an extremely stressful job. Your mental health is important.
Falls are disturbing and happen with the elderly. She may fall at your home too. Sometimes, they aren’t preventable. If she has a serious fall, then you will be taking her to the ER. Are you sure that you want to sign up for that?
I know that you have the best intentions but you know more than anyone how tough it is to deal with emergencies.
Is there another facility that you could place her in that you would feel better about? Have you had any meetings with her social worker about her care?
As a daughter who cared for my mom in my home for 15 years, I would like to say that family dynamics changed after mom lived with me. Moms expect a lot from their daughters. At the same time, they feel badly about being a burden.
It becomes en exhausting experience very quickly. I am not trying to tell you what to do. Of course, that is your decision but I did want to share my thoughts on how it was for me. It’s very hard to care for members of our own family. Having your mom under your roof 24/7 is going to be quite challenging.
Wishing you peace as you navigate your way through this difficult time in your life.
Please search for other facilities. We did this for my MIL and she is now in a wonderful non-profit place run by the Presbyterian church (and she's not Presbyterian). She is on Medicaid and even has a private room. Please explore this option thoroughly before considering hands-on care. I wish you peace in your heart whatever solution you settle on.
Two more questions to factor in: time frame & diagnosis?
End of life situation, one month is very very different to 10-15 yrs PD or ALZ.
Was it that she was still in clothes and soiled brief from the day before?
Or was it that she rang a buzzer for help and no one came running in immediately?
One I would categorize as something that would be cause for concern about the care. The other is not a big deal.
Being a caregiver 24/7/365 is difficult enough when you don't work outside the home or are working in an office. But what you do is Care give AT work then to come home and do the same is a bit much. And I realize you can "switch off" or compartmentalize the "at work" care giving VS the at home personal caregiving. But at some point you will do neither at 100%.
If you can hire caregivers to care for her at home, great. But it should not be JUST when you are at work. You need time to decompress, relax after work. So an hour or two before you go to work then extend for an hour or two when you get home.
I also have to ask are you on a regular schedule or do you work different shifts? If you do it will be more difficult to get consistent caregivers.
I think your best option is to :
Discuss your concerns with the Director of the facility.
If you are not happy with the outcome after discussing then use the resources you have to locate a facility that you feel would be better. I am sure as an EMS you see things from a different point of view than most people AND you can talk to staff and get their opinions.
Another advantage is if you are looking while you are in uniform they may be more attentive when caring for mom.
" I am also sure that her home health visits will continue with Nurse, OT, PT, and an Aid 3 times a week."
If you are talking about in home healthcare after a hospital stay that Medicare pays for, this is a temporary thing. When the therapist feels, again, that a client has progressed as far as they can, she will be discharged. Someone on the forum did mention she was able to use the ""intermitant" part of in home thru Medicare to lengthen her Moms in home care but not how she was able to do it. Medicare is a health insurance and doesn't pay for PT/OT longterm. Without getting OT/PT you don't get an aide either.
To hire someone to be with Mom, and with ALZ/Dementia she should not be alone. Her falling is another factor. Even at $10 an hour, 8 hrs a day, 5 days a week its $400. And its your responsiblity, if u hire privately, to take out taxes and SS and match that SS. If you use an agency, you will pay much more. And you must keep records, have a contract, how u spend Moms SS if she ever needs Medicaid. There are penalties if things are not done correctly.
As I said, this is rehab. It may be in the same building as Skilled Nursing but its not Skilled Nursing. If you don't like the facility, then transfer her to a better place. Be aware though, her Medicare will not start over. If she has already used, lets say, 10 days of the 20, she will only have 10 days of the 20 left in a new place and as of the 21st day, Mom is responsible for 50% of her care.
Dementia is a progressive desease. There is no ryhmn or reason to it. Mom could be good one day and out there the next. Working in the field you do, its going to be hard to come home to a person who literally is like having a small child. You will not be able to reason with her. She cannot retain anything you say to her. She will be self-centered and show no empathy for what u do for her. She may get agressive.
Use the time Mom is in Rehab to find a nice Long term Care facility u like. Medicaid can be applied for but I suggest you go to your Social Service office and be involved in the application. If you do allow the facility to help, be on top of things. In my state you only have 90 days to place the recipient, spend down assets, and get Medicaid the info needed.
I love when my daughter wears her scrubs. I could tell a Nurse something I am not comfortable with and be ignored. Let my RN daughter walk in with her scrubs on and say the same thing...things get done. So wear that uniform. It shows you have medical background.
NeedHelp makes an important observation: applying vocational choice standards and activity to a family member does create a different dynamic, and one which isn't terminated after the patient is taken to the hospital. It's a 24/7 activity, although I'm sure you realize that.
What I would do is consider asking other co-workers in EMS as well as hospitals, and do your own research and visitation, to find a better facility ASAP. If you have to wear your uniform to get good care, that's a very strong indication that this isn't one to consider for any longer than to find something else. Your co-workers may know of some specific SNFs that call for assistance regularly, while others may have much lower incident level needs.
I think it's best to analyze and review all options before making a serious decision such as from facility to home care. And that home care might last only a month or so, after which you would likely be paying out of pocket . I would also contact home care agencies to get enough information on direct pay options so you can narrow down, then interview any potential choices.
I've addressed a similar situation, first with rehab, then with direct pay home care. I contacted the local Area Aging on Aging and Alzheimers' Assn. for lists of both type care agencies. AAA took a week to send their list; AA sent it by e-mail in less than an hour.
I drafted a several page list of questions, first and second interview types, then called and narrowed down the field. You can get brochures, but in my experience each one represents the greatest, best, most compassionate, etc. agency. That told me nothing; it was the actual interviews, as well as review of the documentation that were revealing.
E.g., most of the contracts were stringent, and binding. Only one company agreed to discuss terms, and it was a company with former military at the executive level. Problem solving beyond the caregiving issues wasn't unique to it, while I found most other agencies rigid, stringent, and sometimes defensive. It was "their way or the highway." I chose the latter and crossed others off my list.
I also found that home care agencies w/ reps who visited hospitals, interviewed patients and their families, and even attended a care conference before hiring offered the best, most thorough and reliable services. The one with military execs send a nurse to attend the first care conference, even though they weren't under contract. How many companies would do that?
I won't deny though that I'm hard to please, and any company that wasn't flexible was out of consideration.
I think what I would do is this:
1. Research other SNFs (this one sounds like a disaster), call with your list of questions (perhaps your sister can help, based on her own experiences). Your colleagues may also offer good insights; it's been my experience that people in medical fields are very astute when it comes to not only medical but personality analysis.
2. Narrow down the list and visit with your sister, or others in your profession for a less personal observation. It also would be interesting to compare, e.g., if pre-selection interviews differed from male to female
(out of space; continued in a separate post).
3. You might also ask colleagues if they've observed more falls, injuries, illnesses, etc. from any particular SNFs than from others.
I learned over the years that hospital Discharge Planners have lists of potential facilities, some of which are horrible. I even confronted one DP about a rehab facility I learned about, at which those who came in rarely came out alive. The planner was aware of this hellhole, but couldn't give me any reason at all why it was still on the recommended list.
That told me that she wasn't the only one maintaining the list, and that others were likely involved in the list creation. I did confirm this later when the attending doctor recommended the hospice at which he was formerly an officer for my father when it was clear we were on that path. (I chose a different facility as I wasn't impressed with his former employer.)
4. I also found that rehab facilities which had staff available to meet during a hospital stay provided a higher level of care all around. If there was an issue with one of the home care people, I contacted the rep and it was worked out internally, sometimes by substitution of the offending employee.
These organizations are in it for the long haul; their reps become more involved and have "skin in the game." One even organized a Veterans' Day celebration for the rehab center in which my father was recovering.
My goal would be to assess each situation: SNF vs. home care, thoroughly enough that a good decision can be made with factors on each option. And ask your sister for her opinions; she could offer some good insight on long term care.
A. Another issue to explore prior to making a decision is to ask PT and OT for recommendations on home modifications, such as points for installation of grab bars (including the very long home for bathroom/shower), removal of rugs, placement of chairs so is a fall occurs it's on a chair and not the floor.
b. Life alert pendants are another consideration, as is MOW to provide some limited companionship as well as food variety. If your mother is eligible for VA services, check out the Caregiver options as well. I only had a few encounters with the team social worker for my father, but I was very, very impressed.
3. Your sister could probably offer suggestions as to entertainment while at home. My father had a collection of CDs; he'd listen to them while he worked on out his little hand/foot bicycle.
4. Neighbors voluntarily offered to check on him as well; we each provided best contact numbers and there were in fact times when they gave me head-up alerts.