Responsibility of ALF?

"DementiaALF," - Since it looks like you are new to the forum, I just wanted you to know I sent you a message to your "profile page."

I'm so sorry your mother passed away, that's a terrible outcome! I definitely think you should have been told about the situation before it became an emergency. Not having a BM for a week, accompanied by lower left quadrant pain even after taking prescription pain killers should have been enough of a red flag for her to be seen at the ER after a couple of days, in my opinion. Had you gotten a phone call, YOU could have told them you wanted her taken to the ER by ambulance. At the very least, her PCP should have been consulted by the staff at the ALF. There's been SO MUCH worry about bringing people to the ER b/c of The Virus, that serious health issues have been ignored and many folks have died as a result. That's my feeling on the subject.

When my mother was living in the ALF section (she's now in the Memory Care section), I called over there one day several times and there was no answer. I knew something was wrong b/c she hadn't been feeling well and was coughing slightly. The 4th time I called, she answered the phone, sounding terrible. She said she had a fever and didn't feel well. I hung up and called over to the nurse's office right away; the nurse said she thought my mother had a UTI! I said NO WAY, the woman is COUGHING and has PNEUMONIA. Please call an ambulance immediately and let them know I'll meet it at the hospital. I was right, she had pneumonia; spent 7 days in hospital and 21 days in rehab afterward. Had I not been able to get through to her or to the staff that day, she may have died due to a 'misdiagnosis' by the nurse at her ALF. I can't say for sure how things would have turned out, but 'not good' is my gut feeling.

Call the Ombudsman and see what s/he has to say; their name and phone number is publicly posted on the wall outside of the EDs office or the nurses office, normally, at the ALF. Ask at the front desk or just call over there for the info.

Again, my condolences over the loss of your mother. Sending you a hug and a prayer, my friend.

My first thought is: how is your mother now?

I should concentrate on the concern about her bowel habit and ask to be kept informed about how that's going.

The issue of whether or not somebody ought to have got in touch with you to tell you about this - when exactly? On day two? Three? Four? - doesn't make any difference to anything, and I should let it go. It isn't as if your having been told earlier on would either have alleviated your mother's tummy ache or shed light on the cause of the problem.

Assisted Living generally puts seniors into levels of care suited to them. For instance my brother was self caring, gave own few medications, and was able to contact his doctor if he had concerns. He was in level one care which is very inexpensive. For those needing more assist, say with phone charging, laundry, changes, dressing or shower assist, assistance will appointment and assessment by medication nurse of LVN on duty, there would be higher cost and more care. You might check to be certain that your Mom is in the correct level of care. If no one assessed these complaints and pain without a suggestion of MD followup are they assuming she is speaking with you? She may require a bump up in care, and your making it clear that while she may communicate this pain to you, you have no way to keep track of bowel movements, need for meds or call by the POA for health to medical. I think this is more a misunderstanding if there are not other problems, but in Covid19 times things are certainly bound to fall through the cracks. So very hard when you cannot be there to check.

Dear "DementiaALF,"

This has been common in my experience especially with the pandemic and staffing being spread too thin if any of them get the virus and are told by the facility to stay home. It is something I have found very frustrating.

My mom was diagnosed with Alzheimer's in 2014 when she was 89 but since she was mobile, able to dress herself and feed herself, we placed her in an ALF. They put her down for level 1 care. It seemed I had to constantly get after them about something and it really began to wear me down.

Now at the age of 95, I hadn't seen her since February 28th and then the official lockdown took place on March 13th. My first reaction was "oh no, I'm not going to know what is going on or not going on when it comes to her care." My husband ending up buying my mom an iPad even though it was difficult for her to use but we wanted to keep an eye on her visually. It worked until one week she wouldn't answer her iPad which was in the living room. We got an unexpected phone call on April 22nd not from the facility but from her mobile doctor's nurse who did a videoconference with my mom. She said my mom was severely dehydrated and also had COVID and what did I want to do? I was in shock when she said my mom was near death just from the dehydration itself. Needless to say I was furious. I thought my mom would die in the hospital without me even being able to see her. She did survive but has not been the same since. She went from the hospital to a physical therapy/rehab facility for three weeks giving us time to try and find a new facility and place her in memory care. It was very difficult to do since very few places were taking someone recovering from COVID. We did move her though and she is getting better care. They have been good about letting me know when she has fallen. She's fallen at least 8 or 9 times since she's been there since May 19th. Hospice is involved now too since my mom is no longer mobile or able to dress herself so they have been my extra "set of eyes."

It is very reasonable to expect a phone call from someone on the nursing staff. What a terrible way for you to learn of your mom's pain and having not had any bowel movements for over a week. They should have called you and if your mom had a doctor, should have contacted him/her and received some input from them. You can always contact an Ombudsman who is a patient/family advocate when there is an unresolved issue with communication problems if you feel you yourself aren't getting anywhere when you express you want to know when there's a change in your mom's health. They act like a liaison on your behalf.

Even though she's in a better facility, I still have to ride herd on them regarding basic things like keeping her phone where she can reach it. Also, keeping her fluids nearby etc.

I sure hope you are able to get to the bottom of all this - good luck!