OK, here’s the story on the latest with my mom. It’s a long and winding road I tell you, and I feel like I’ve told so many people various parts of this and I’m so exhausted in telling the story! I guess I better get used to it!
So the latest drama, and what sparked a recent cry for help on Facebook, started with a phone call last Thursday morning from the social worker at VNA. She was calling to express concern over my mom’s safety around medication management, and wanted to get my thoughts. I had been concerned about her safety too – the last time I went to see her I found out she had been doubling up on her Oxycontin meds because she hadn’t understood the instructions. She’s constantly confused about what time it is and repeats herself. In short, she’s been acting a lot like she used to when she was drinking.
The social worker said that what they’d like to do, with my permission, was to have the VNA nurse who was due to visit later that morning suggest a hospital stay to my mom. This would be to get her stabilized with regard to medication management, and if she could be admitted for 3 nights, she can then qualify under Medicare to be discharged directly to a Skilled Nursing Facility (SNF) (which I learned is today’s PC term for a nursing home). In short, living alone doesn’t seem to be viable for her anymore.
The social worker called me around noon to say my mom had agreed to the hospital and seemed “relieved”. She was transported by rescue.
I called the hospital around 5 pm to see if she’d been admitted, and she had been, but was still in the ER and had not yet been moved up to her room. I called again around 7 and the floor nurse said she had just arrived and was doing fine. I told the nurse I would call mom in the morning.
In the morning, Friday now, I called my mom. She started off with, “YOU did this to me! YOU had me dragged out of my home! I didn’t know the law then but I do now!” I was floored, I tell you. I said, “Do you see this as punishment???” to which she replied, “You bet I do!”. Well we talked some more, with me very much on the defensive, and I tried to explain how things had happened from my perspective. After a bit she actually calmed down and saw that I was on her side. A real plus, I don’t mind telling you!
The case managers/social workers who had been calling me all agreed on a few things. One, my mom didn’t actually meet the criteria for inpatient care. (So why did they admit her???) Two, this meant that Medicare would not only not pay for her stay at the hospital, but she would not be eligible to be discharged to a SNF under Medicare. Anything we did would be Private Pay or Medicaid if she qualified (she doesn’t).
Over the course of that day, and Saturday, and Sunday, I fielded countless calls from the case managers at the hospital, hospice, social workers from one agency or another. I feel like I was on the phone all weekend. When I talked to my mom on Saturday morning she suddenly sounded like herself. In fact, dare I say she sounded nearly like herself of 25 years ago. You know, the one I used to like. She was sane and rational and clear headed. She said she hadn’t taken any pain meds stronger than Tylenol in several days. Her regular doctor had been in to see her and was appalled at the narcotics the oncologist had her on. She and I agreed (and this had come out on Friday as people would call me, then go talk to my mom, then call me back, etc, etc) that if she needed to be moved anywhere that she should be moved to my area so I could visit her more and take a greater role in her care. She was quite literally happily tearful that this was something I wanted.
So I called a local facility and made an appointment for Saturday. This particular one has both a SNF and an Assisted Living facility. SNF’s are, or can be, covered under Medicare, while Assisted Living is always paid for privately. My mom really doesn’t meet the criteria for SNF’s anyway. I mean, they would take her if that’s where I wanted to send her, but she doesn’t need help bathing or dressing or eating. And if she’s off the narcotics she probably doesn’t need help with meds management. So I really only looked at the Assisted Living portion. As a facility it was pretty nice. Clean and cheerful looking. It was lunchtime when I visited so I got to see all the residents at one time in the dining room being served their chef-prepared meals restaurant style. The first thing I noticed was that no one was talking. The room was silent except for waiters asking whether someone would like more coffee. The second thing I noticed was how the life seemed gone from most of the eyes I saw. It was utterly depressing and not a place I could picture my mom, at least not right now.
I took yesterday off work with the intention of visiting a few more places. First thing yesterday morning a friend emailed me about a place that is Independent Living, that another friend of our’s grandmother had lived in years ago (got all that?). The web site looked intriguing so I decided to drop in.
I was there almost 4 hours.
I fell in love with this place. I walked in and I felt life. Residents were gathered in the atrium enjoying the sunshine. They made eye contact with me. They were conversing with each other. The Assisted Living facilities also have activities planned, but based on what I saw, I can’t imagine anyone participating in them. This place has activities and people do them! There is a husband/wife management team who live right there on site. I fell in love with them too. I was honest about my mom – she is 71 (so young! they said) and her condition is likely to worsen over the next 6-12 months. I worried that as time went by they would no longer be able to keep her there. They were very thoughtful in their response to me. They said some of their residents are on hospice now, and that as long as my mom was comfortable there, and I was comfortable with her there, she would be welcome there. They don’t provide any medical care themselves – it’s basically an apartment building for seniors, except all 3 meals are provided, housekeeping, and the activities, etc – but any services my mom receives today such as VNA, hospice, etc she could receive there as well. Oh, and it costs less than half what the assisted living places charge!
Because I spent so much time there (they invited me to have lunch with them in the dining room – the food was good, residents talked and laughed with each other!) I only had enough time to visit one more place – an Assisted Living facility on the way home. I was very discouraged here – it seemed dirty and the staff was very young. I met a friend there who was volunteering so I got to go in to some rooms and meet some of the residents. We heard one resident crying out from her room while a few steps away staff was relaxing having a private conversation. I walked past a room where a “birthday party” was taking place and the residents were sitting in rows, not really looking at anything or seemingly engaged. Again, not a place I can imagine my mom.
So to back up a minute – the hospital would not discharge my mom until we had a “plan” in place. They put a lot of pressure on me to give them the name of a SNF and I finally said, “This is not a decision you make over a weekend!” Long story short, we were basically forced to set her up with someone coming in to the house a few hours a day to help with stuff like housekeeping, laundry, meal prep, errands, shopping, etc. She would like a few weeks at home to sort of get her affairs in order there before moving. She has all these grand ideas of getting her house ready to put on the market. So that’s what we’re doing for now – she has someone coming in for 3 hours a day (at $22.50 per hour) to do those things for her…for now. She has decided not to continue chemo, even though she felt fine after the first one (second one was due for today). I think mostly she is disgusted with her oncologist and has decided not to use him at all anymore (though only a few weeks ago she was disgusted with her regular doctor who she now thinks is awesome).
I think that pretty much brings us to the present. I’m stressed out all the time, but I feel better right now than I did even a week ago. Those narcotics are nasty and really messed with her mind. And apparently she didn’t really need them for pain, at least not yet. As she said, she’d rather feel a little pain than be loopy.
And with this, I am hoping that my NEXT post will be about something fun. Like maybe my love life! 🙂
Wow, not only was that a lot to put you through, but it also proves just how difficult it can be to find any kind of health care practitioner that you can trust!
I’m so glad that you’ve found a palce your are both comfortable with, and that you both are able to communicate clearly each of your needs & wants.
Sending positive strenghtening vibes your way!