March 6, 2019

Lunch with Jane:

When I arrived, Jane was sitting at the kitchen table waiting on me for lunch. Myron was making his way to the kitchen for lunch so we waited patiently for him to pass before I pulled the chair out to sit next to Jane. Jane didn’t seem to mind the delay, although as soon as I scooted in next to her & pulled her lunch plate close to her, she opened her mouth. Did that mean she was hungry or does her body just automatically assume sitting at the table means to eat?

Robin popped by while I was feeding Jane lunch. Robin is social & always comes by to say hello. Jane never minds & some days we even invite Robin to join us on our walks. Today Robin simply said hello & chatted for a minute before heading to the kitchen to eat lunch. Jane ate well for me & was excited for her cupcake – banana split. Shortly after Robin left, Jane’s roommate was headed our direction. We heard her talking to Robin. As soon as Jane heard her voice, she froze. Her eyes got big & she immediately reached for my hand & squeezed it tight. The look of fear was on her face. I was able to calm Jane down by telling her not to worry, I would not allow anyone near her, but Jane’s eyes didn’t relax until the roommate had safely passed. I quickly helped Jane finish her cupcake & took her outside to visit.

Once we were outside, Jane again relaxed. We made a loop around the facility before settling under the trees. Once we were both sitting & eye to eye, Jane looked at me warmly & smiled. It was the first acknowledgment that she recognized me. We chatted away while I texted my Dad about Jane’s reaction to her roommate. I didn’t have a lot of time today & I wanted to spend it with Jane, but I was also watching for a nurse or Sean (the owner) to talk a bit more about my concern for Jane. If you read last week’s post, you know I spoke with the assistant nurse, Deborah, about bruises Jane had on her body which were unexplained & the fact that Jane told me she was scared. Despite my concerns, Jane & I had a nice visit & then I took her back inside.

When I took Jane back to her home, I found Deborah there assisting another resident. I asked her for a quick moment to talk & explained I was concerned Jane’s roommate may be harming Jane. I explained how 2 residents came by during our lunch with no reaction but when the roommate approached, Jane acted scared. She asked me to speak to Patty on my way out – she said she will listen to you. I’ll tell her you are on your way.

Well, my visit with Patty did not go well – in my opinion. She was dismissive of my concern. I pushed back & said I am here every single week to visit Jane. Someone in our family is here every single day to visit Jane. I am basing this concern off of our experiences. She asked me if I had proof & I said no – I am just going off my gut. Patty said well there are no notes or anything. I said ok – well there are no notes about how Jane fell out of her bed last week or how she received 3 bruises in various places on her body. How can you know these weren’t caused by the roommate? Patty told me we’ve changed Jane’s meds – this is all tied to that. I told her I don’t buy that since Jane was non reactive to everyone but the roommate. It was a very short conversation. I felt Patty wanted to hear nothing of it. I walked out angry. Sean, the owner, had someone in his office when I left so I didn’t have a chance to speak with him. So I called my dad.

Here is my problem:

Our family has been involved in Jane’s care from day 1. Jane has lived in this facility for over 3 years. Someone from the family visits her every day. Not once have we made silly allegations or questioned Jane’s care. If anything, I think we have given more grace because we are there every day. We only bring things up for attention out of concern for Jane. If I tell you I am concerned for my stepmom, I expect you to listen to that concern, ask questions & show me I can trust she is receiving the best care. I absolutely appreciate you can not be in all places at all times. I understand things will happen. I’m not accusing you of providing bad care. It is our job (meaning Jane’s family) to be her advocate & voice. If I tell you something is amiss, you need to trust my instincts & investigate it. Don’t blow me off.

To be fair – every time I have addressed an issue in the past, it has been accepted warmly, with curiosity & genuine concern. I have always been happy with how things have been handled in the past. Perhaps today was just an off day for Patty. Or perhaps she has blinders on & is not willing to see the entire picture. My impression today from Deborah is that Patty had not taken my concerns last week seriously – hence why Deborah wanted me to talk directly to her today. Last week’s conversation with Deborah was great. She listened, made me feel heard & shared her thoughts & action plan. I had the exact opposite conversation with Patty today.

My dad reached out to Dr. L – the psychiatrist on staff. She leads the support group my dad goes to & my dad has great respect for her. She responded quickly & suggested a meeting with herself, Patty & Sean. This is the kind of response I like (& honestly expect) to receive. I promise to update with the outcome of the meeting.

In the meantime, I know Emely will keep a close eye on Jane any time she is working. My dad will be keeping a close eye too. And I believe it’s time to start dropping in to visit on off hours. My gut tells me the problem is at night, when the staff is light & the residents should be sleeping.

I share this story with you all not to say I don’t trust the facility, don’t trust Patty or fear Jane is receiving bad treatment. Thankfully none of that is the case. However, something is amiss with Jane. Whether her roommate is causing her harm or her meds are causing this fear, it needs to be resolved. This is why families have to be involved in the care of their loved ones being cared for by another. And I encourage you to speak up & advocate for your loved ones – especially those who are unable to speak for themselves, like my stepmom. It is not unheard of for Alzheimers patients to act out aggressively. It’s not their fault – it’s the disease. However, that does not make it right.