I hate visiting my mom. I dread it every time I go - at least once a week, sometimes more often. I dread it for days beforehand and I have a sense of relief that I “did my duty” when I walk out to my car after. Then the cycle will start all over again.
Mom has been in the nursing home for two years now. It seems like such a long time, and it has gone so fast as well. She is in the same room as the night she arrived, when I helped her out of her hospital gown and into some soft and warm pajamas I had packed for her. She was terrified. She was brought in via ambulance from the hospital where she had spent the last 3 nights. Our quest to get her the help she needed, that I needed, had been quite a fiasco. It all came to a head three days prior when I had set up her admission to an assisted living facility. While I was not surprised, I am still amazed at her determination and mettle. It was simply NOT going to happen. She was NOT going to allow it. There were a lot of low blows (a common practice she resorted to when threatened), personal attacks on me, my husband, my sisters. She yelled. She wagged her finger. She was not even going to try one night and see how it goes. Finally, when she saw that I wasn’t budging, that the director of the facility wasn’t giving in to her wishes, that my husband wasn’t going to take up her cause and advocate with me to let her go back home, she left. Yep, she walked right out, about a week before Christmas. It was chilly but not freezing. She had her coat on and her purse in her hand. She walked out, down the sidewalk and up the steps to the parking lot. The director stopped me from going after her and said “let her go.” My husband followed at a good distance behind her just to keep tabs on where she was and what she was doing. She stopped at the top of the steps, looked around, knowing full well she had NO idea where she was or where she was going, or how to get there, but she certainly was NOT staying here. She started heading off down the sidewalk toward town. I called the police. It was obvious she was not going anywhere with me, that’s for sure. I need help. So the police arrive and she agrees to go with them to the ER and we meet her there. She refuses to allow me in her room, so hubs and I sit in the hallway, trying to stay out of everyone’s way as they bustle around taking care of the emergent and not-so emergent needs that are presenting on a typical Friday afternoon and evening. She keeps her coat on, and holds onto her purse. A couple of times she stands, looking out the curtain, surveying the lay of the land and finding the nearest exit. She sees me sitting there, and then pulls her head back in and sits back down on the bed, like a kid that got caught waiting up for Santa Claus. Hubs and I talk to the attending physician, telling him the story, after we have shared it with triage. He calls in the psych department, and I am hopeful. They will be able to see what I know: She cannot take care of herself, she is in danger of an accident or injury to herself or others, and she hallucinates. She wanders and has no idea where she is. For crying out loud, two weeks ago she was in a different ER because she spent an entire night in a bathtub because she couldn’t get out of it! Tell me that is not cause for admission. I dare you. Nope. Not a cause for admission to the psych unit. She is not a danger to herself of others. At this point, hubs and I have waited about four hours and have told her story over, and over, and over again to whomever would ask. Mom tries twice more to sneak her way out, the security guard gently retrieves her and brings her back. She refuses any medication they offer. (She may have Alzheimer’s, but she’s no dummy.) I am at my wit’s end. I am crying, frustrated. “I CANNOT take her home,” I repeat to everyone. “She is not safe there and I cannot take care of her.” WOW. Did I just say it out loud? “I cannot take care of her.” What a failure I am. What a horrible daughter. I was SURE over the past two years of advocating for her and trying to get her help without institutionalizing her that I would be able to get the job done. Save her from the one thing she feared most. I probably should have quit my job and taken care of her full time. I should have forced her to have someone with her during the day instead of giving up when she started calling the police to report an intruder. I should have known about all the resources that were available to her, and to me, to prevent us from getting to this point. I should have, but I didn’t, and here we are. We continued to wait, I continue to cry, and the nursing staff often stop to give me hugs and condolences, telling me stories of one of their family members who are or had struggled with dementia and their own experiences and frustrations with the system. Telling me about how hard it was on their parents to make the decision to place their grandparents. Trying to make me feel better, but of course I didn’t. The next shift at the ED comes on, a new resident comes and asks us ONE MORE TIME to tell the story. Frustrated, exasperated and exhausted, we tell her, “Look. We’ve been here since 2:30. We have told this story to ten people at least. Check the notes. I can’t take her home. She can’t be alone. I need someone’s help.” She leaves and about fifteen minutes later the attending for this shift comes in, checks on mom, and pulls hubs and I aside. “I know you all have been here for quite a while. The problem is, we have no medical criteria to admit her, and we’ve been trying to find something. I’m probably going to get in trouble for this, but I’m authorizing her admission for the weekend and the social worker will help you to find her a bed on Monday.” I could have kissed him. I wanted to hug him. Instead I thanked him at least 10 times and shook his hand. That weekend I called several times to check on how she was doing. She was combative, argumentative and resistant and attempted to flee the floor several times. They had to medicate her. After discussion with the nurses we determined it was best that I not visit her, as to not upset her further. The caseworker would be in at 8 am on Monday. I would be there, too. The caseworker was a sweet young lady who seemed to have heard my story before. I recounted as quickly and as efficiently as I could the journey we had been on the past two years that included doctors, psychiatrists, neurologists, contact with several different nursing homes, attorneys, active aging, insurance companies, adult protective services, in home healthcare, and finally the ED. She could help get the ball rolling. I didn’t tell her that I had heard that before. I decided I would wait and see. Later that day, I got a call from the nursing home that my mom would eventually end up getting admitted to. I spoke to the admissions rep who had met with mom at the hospital and determined that she was appropriate for this level of care and her insurance would be able to cover it. They were getting the paperwork ready and would be bringing her in later today. Could I stop by and bring some of her belongings and sign some paperwork? My daughter and I put some things together (her bag was already packed for her unsuccessful admission to the assisted living facility) so there wasn’t much to do. We met with the admissions rep and went over paperwork and she shared with me her interactions with mom earlier in the day. I signed the paperwork, finalizing her move into the home. I cried through the whole process. I was giving up. I was failing her. This isn’t what she wanted. It wasn’t what I wanted either. So finally the ambulance arrived with my mom in tow. We followed them down to her room that is her new home. I hadn’t seen her since that night at the ER. She looks exhausted, pale, emaciated. All I see in her eyes is fear. “Where am I?” “Who did this?” What are you doing with me?” “I’m not staying here.” Over. And Over. And Over. I got her tucked into bed, and the rep came along with a tray of food for her. I tried to coax her to eat. She tried a couple of things but didn’t finish anything. The rest of that visit is a blur. I don’t know what we did, what we talked about, what excuses or rationale I gave her for why she was in this predicament. All I remember is looking in her eyes and her looking in mine and seeing the fear. I’m sorry, mom. I just couldn’t pull it off. The days afterward turned into weeks and it took a while for me to shake the feeling that I had been through some sort of traumatic event – like a bad car accident, or being assaulted. If I felt that way, I had no doubt that mom was the same, or worse. My heart ached. Eventually, though, we both adjusted to the new arrangement as best we could. She, of course, would (and does) have a much more difficult time than I do. I try to remember that when I dread visiting, when I would rather avoid the reminder that she’s not where she would prefer to be, and avoid having her ask me four or five times every visit if she still has a home and if any of her family is still alive. That sense of relief I have every time I leave her is because I know I kept my promise to her (and myself) to be her advocate, to do my best to reassure her, and make sure her needs are met. Even still, every time I leave her and walk freely out those doors, I’m reminded of that very first night and that fear in her eyes, and how I failed her.
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