No matter often you visit your loved one when they are in a hospital or nursing home, you can’t be there 24/7. You can’t see all or hear all. So how do you really know they’re getting good care? The care they deserve? You don’t. You can’t.
My mom fell 7 weeks ago and has been in a skilled nursing center for the last 6 weeks for physical therapy so she’ll be strong enough to return to our house.
She stayed in this same facility two years ago for the same reason-physical therapy. Then, as well as now, the place is clean and nicely decorated. The staff is very welcoming when it comes to eating meals with my mom and visiting as often and whenever we’d like. I was confident that she would once again receive good care and return to us stronger than she had been before.
But, how could I really know? I couldn’t. And the big difference between the last stay and this one is my mom. Her Alzheimer’s is so much worse than it was two years ago!
My senses were on high alert from day one. All along there have been little, subtle things that concerned me. Not in a way that I felt she was being abused, but just that this facility, known for its physical therapy and as a nursing home just wasn’t equipped to handle a patient with this level of dementia.
Although long, this post is an effort to point out some things that might be subtle, and alone, probably don’t mean much. But when you start to add them up, you get a picture of a place that is not providing good care for my mom.
Remember, she’s there because she fell. Two years ago, there was a pad on her bed and in her wheelchair. If she got up, an alarm went off alerting the staff. They got her settled in bed. No side rails, no alarm. I questioned this because I was seriously concerned that she would get up to use the restroom and fall. The answer I was given was that someone attended a seminar and found out that the alarms don’t really help because the patient gets startled by the sound and then falls.
(My answer? Use a silent alarm that alerts the staff in a pager. Also, I did a Google search of “do bed alarms reduce falls” and the most common answer was no, though not for the reason given to me. My point? She isn’t going to remember to call you if she wants to get up, so how will you know if she falls?)
As an aide helped her to the restroom, she admonished my mom because she didn’t call her for help, saying, “Miss Carolyn! Don’t you remember you have to call me when you need to get up?!” To which I replied, “No! She doesn’t remember. She has Alzheimer’s.” The aide responded by saying, “Oh, I didn’t know that!”
She’d been there almost 24 hours and this aide did not know she was tending to an Alzheimer’s patient.
Within the first week
One of the first things I did was schedule a beauty shop appointment for her. My mom’s of the “roller-set” crowd and desperately needed a perm so I quickly took advantage of the convenience offered by this in-house service.
When I visited later that evening, her hair wasn’t done. When I inquired, they said she didn’t cooperate. I suggested we reschedule and the beautician call me about 30 minutes before she was going to do it. I went over with my laptop, explained to my mom what was happening and sat in the salon while she got her hair done. No issue.
During her care conference, we talked about the fact that she doesn’t eat much meat. From the dietician’s standpoint: “She’s only eating 25-50% of her food.” I suggested they cut her meat for her, which probably wouldn’t make much difference because she now seems to really prefer softer foods.
I acknowledged that I knew he had to provide her with certain servings and a balanced meal. I relayed that we tease her about her hollow leg at our house. She may only take one bite of meat, but she will eat four helpings of mashed potatoes, three helpings of fruit or the vegetable if she likes it. I asked if it would be possible for the dining staff to take note of what she’d eaten. If she hadn’t touched the meat, but all the stuffing and vegetables were gone, could they offer her more?
He cheerily responded, “Oh, she can always ask for more! Yeah, well, she has dementia, pal! She’s not going to think to ask for more!
The signs continued.
Her bed and clothes were soiled with urine. Often. She’s not completely incontinent. Sometimes she uses the bathroom, sometimes she uses the brief. When she’s home, if we notice her brief is wet we guide her to the bathroom and tell her to change her pants. Nothing ever soaks through. But, with no one really paying attention to it or encouraging her to change it, it just keeps getting more full.
At home, we keep her briefs sitting out on the bathroom floor. They used to be in her underwear drawer in her dresser. Then we moved them to the vanity drawer in the bathroom. Then right out in the open so she can see them. You see, she might go to the bathroom and notice that the brief is wet and full, but without seeing a fresh one sitting there, she wouldn’t know what to do about it. Guess where they keep the briefs in the facility? Inside her closet in the opposite corner of the room as the bathroom. On the top shelf (which she can’t reach when she’s sitting in a wheelchair even if she knew they were there)!
I got a call December 23rd from the social worker. My mom had been there nearly a month and it had been brought to the attention of the social worker that she was uncooperative when it comes to showers. Welcome to my world. The social worker thought maybe I could come in and help. We decided on 8:30 the next morning (Christmas Eve). I showed up at 8 ready to help. Of course the message hadn’t been passed on and the staff had already attempted to do it at 7 that morning. Let me tell you, my mom HATES taking a shower. I ended up doing the whole thing myself.
Up until then, I had been thinking that if they were able to qualify her through Medicaid to stay there permanently, I might do it. Then I thought if I’m still going to have to come in and do the very part of the care giving I hate the most, why would I pay them $7500 a month?!
I haven’t been asked to come in and help again with the shower, but I’m pretty sure she hasn’t had a full shower since. I know her hair hasn’t been washed. She doesn’t smell, so I think they’re managing sponge baths, which is ok, I guess.
On Christmas morning, my son and I went to pick her up to bring her to our house for the day. She has an ankle bracelet on because of the dementia. She’s an “elopement risk.” I was told they don’t take it off, but to let the receptionist know we were going out and she’d turn of the alarm while we exited the building.
No receptionist. Waited a few minutes. No receptionist. Well, it’s Christmas, and I don’t have all day. Out the door we went. Alarm ringing loudly. We loaded her in the car and my son stayed with her while I took the wheel chair back to her room. I walked back in and was well past the lobby before a member of the kitchen staff finally peeked around the corner to see what the alarm was for. A good three to four minutes had passed before anyone even noticed.
All of these things are noteworthy in and of themselves, but when you put them all together, a picture of poor care begins to emerge.
One of the best things about my mom’s stay has been her room mate. A wonderful woman who is simply there for physical therapy. Her mind is sharp as a tack! I’ve learned much more about my mom’s progress, mood and behavior from her than all the staff members combined.
Last night, she told me that she has reported three of the aides for their treatment of my mother. Two of them were fired. The incident that resulted in the termination had to do with my mom’s shower. Now, my mom swears and hits and yells about a shower. She HATES them! Especially when they come in at 7 am while she’s sleeping, turn on the lights, wake her up and say, “TIme for your shower!” I’d cuss, too! Apparently, they weren’t too kind in return one day. I don’t believe they were physically abusive, but whatever they did exactly was enough for them to be fired. (Mind you, I haven’t been informed of any of this by the facility.)
What disturbs me most is this: One morning about 5:30 am mom’s room mate called the aides because she needed assistance herself. Two responded. When they finished with her, one said to the other, “Hey, watch this.” She then went over, turned on my mom’s light and said, “Wake up! Time for your shower!” Just to get her riled up. This infuriates me.
I called this morning and told them I will be bringing my mom home on Friday. (I can’t do it sooner because of paperwork and the need to make some arrangements for her here at home.)
The good and bad of this is that my mom doesn’t remember the ill-treatment. She raves about how good they are too her. But, because she doesn’t remember any of it, she can’t report it. I’ll never trust anyone I don’t know well to care for her. Not ever. Even if she were in a facility that specializes in dementia care, this type of disrespectful treatment could still go on. And there, her room mate wouldn’t be able to tell me what’s happening any more than she can.
If you made it through this whole post, thank’s for hanging in there. I shared this story to demonstrate that mistreatment of your loved one doesn’t necessarily manifest itself in bruises, bed sores and a dirty, dingy environment.
I encourage family members to look for the little things, the subtle things along the way to know if your loved one is being treated with respect and dignity in addition to having their physical needs met. Be vigilant. Talk to room mates, families of room mates. The staff. Let them know you’re watching! And don’t be afraid to speak up and take action when it’s not going as you think it should.