Throughout my adult life I have always taken certain things for granted because I can make these decisions for myself. Maintaining my own sleep schedule is one of those givens in life. Every day I decide when to go to bed and when to get up and how many hours I will sleep, or even if I need a nap. In short, I regulate how much time I spend in bed. Over the course of the last 6 years, I’ve come to realize how important this basic decision is and how distressing confinement to bed must be. Such is the case for an Alzheimer’s patient.
Confinement to bed has been something I’ve gone to war over with my mother’s caregivers. It has become a particularly tense issue since my mother has become wheelchair bound and this problem has even spanned facilities. It is an ongoing source of stress. The high level problem is with caregivers keeping my mother in bed rather than getting her up and in her wheelchair. Staff tried to couch this as a sleep issue at first. It isn’t. It’s a blatant deprivation of human rights and a way to ease workload.
I started to find my mother still in bed at all hours
When my mother became wheelchair dependent for mobility, I began to notice that I was finding her in bed more often when I went in to visit. It didn’t matter what time of day or whether it was mealtime or not. I would go in to help with a meal and find her in bed with her meal tray in front of her. There were times that I would find her still in a gown at lunchtime or even dinner. It didn’t take long for me to start asking questions about this practice and to start requesting staff to get her up. This is when tensions flared.
Mom had been moved from rehab to the long term care wing. I had never encountered this issue when she was in the rehab wing. They always got her up and I always found her scooting around the halls in her chair and smiling. The staff always bragged about how active she was and how great she was doing. But in long term care I started to notice staff mumbling about her mobility and zest for exploration. They complained to me often that they had to go and find her and that she would manage to get all the way over to rehab or the activities room by herself. My reaction was always “Go Mom”! This made her happy.
Long term care staff didn’t want to be bothered finding my mother
On a couple of occasions, I went in for a meal and she was nowhere to be found. She wasn’t in her room. She wasn’t in the dining room. I had to go search for her and inevitably found her in a different wing. By the time I found her and got her to the dining room they were stopping the meal service and staff members were taking patients out. I was a little stunned and asked about why my mother had not eaten her meal. They brushed it off and said they thought she was eating in her room or they couldn’t find her. No one bothered to find her and no one bothered to make sure that she had a meal.
Confinement to bed was the staff’s solution to hunting down an Alzheimer’s patient
This was the beginning of a growing problem. The staff did not like to go hunting for her. So their solution, more often, was to leave her in bed. No one had to find her if she was in bed. And she couldn’t complain because she was non-verbal. I had to address this problem head on because my mother was spending 24 hours a day in bed. Confinement to bed was making her miserable. She couldn’t tell me this but she wasn’t smiling and wasn’t engaging at all. I escalated the issue to the point where the staff on the entire wing despised me and, quite frankly, I despised them. I could feel the tension rise when I walked down the hall to my mother’s room.
Ultimately I got her out of there. But it took a toll on me personally to protect my mother’s rights. I was making 2 treks a day over to the facility which was 25 minutes each way and spending a couple hours with her each visit. It didn’t leave me with time for much else for the 3 months that I did this. It exhausted me too. I was her insurance policy to make sure she was out of bed every day and able to move around.
This practice of leaving a patient or resident in bed for excessive amounts of time is a real flashpoint with me. The more time a patient stays in bed, the faster the patient declines due to lack of conditioning. It’s depressing for a patient and it takes away all opportunity for socialization. Patient confinement to a bed is a very sneaky practice and it robs vulnerable people of everything.
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