Beth and Marianne Whitman
by Beth Whitman
All is not roses.
The other day I got a call from the Alzheimer’s facility. They told me that Mom was having trouble “transferring.” In nursing-home language, this generally means moving from the bed to a wheelchair or from a wheelchair to a commode. This is usually accomplished with a physical assist from an aide, or, if someone is wheelchair-bound and cannot maneuver on their own at all, hospitals and related facilities use an assistive device called a Hoyer Lift, which is a hydraulic sling. When Mom first went into the facility, she could still manage to move, with the assistance of an aide, from wheelchair to toilet, but for about six months now, she’s been at the point where she no longer knows how to stand up, even with someone helping her. So they had switched to using the Hoyer Lift.
At first, it had worked like a charm. But now the Alzheimer’s facility informed me that physical therapy was going to work with Mom to see if they could help to make transferring a little easier for her. Apparently there were issues with Mom and the hydraulic device.
This did not surprise me. The other day when I went in to visit, I happened to show up when a couple of aides were toileting Mom, and I saw that she was not grabbing the handles of the Hoyer Lift, nor putting her feet in the proper spots. She was held in place only by the band around her upper torso, sort of just hanging there.
I asked what was happening, and they said that they were waiting for the nurse to come give her a suppository. Mom was not yet highly distressed, but she was getting close, so I asked the aides to put her back down and skip the suppository.
They did, and while they were finishing with Mom, I went to the nursing station to ask about the suppository regimen. I was told that the protocol was to use a suppository when a patient has not had a bowel movement in three days, and it had been three days for Mom. I asked them to hold off, and then went and got Mom and hung out with her a bit more before leaving. But something was still bugging me.
A few days after getting the phone call about the new physical therapy plan, I went to visit Mom again. We walked the hall, hand in hand, her in the scoot chair pulling on the railing with her other hand. She was in a pretty good mood. She was talking, such as it were, as we walked along. Her verbalizing now sounds like this: “Bu, b, b, bu, bu, bu . . . ” I call it bubbering.
This is Mom’s current default state. She is either bubbering like this, or asleep. I can usually gauge her mood by the volume and tone of her bubbering, as well as by the furrowing of her brow.
We got some ice cream and ate it in the rec room, and then I wheeled her toward the window. She likes to look outside but there was a bunch of equipment blocking the view. I went to move it out of the way, but her volume and distress level started to increase.
“Bu, b, b, bu, b, BU, BU, BUT, BUTT, BUTT, TUP, UP, UP, UP . . .” She was pushing away with her feet.
I turned toward her and asked, “Is someone putting something up your butt?”
“YES!” she said, staring at me.
“And you don’t like it?”
“NO!” Her stare grew more intense.
I put my hand on her shoulder. “Well, then I will tell them to stop. You stay here. I will be right back.”
She was completely quiet as I left the room.
I was furious. I had discussed all of this with the doctor when Mom first entered the facility. I walked down to the nurse’s station. I asked again about the suppository protocol. The nurse on duty was very helpful. I told them that Mom had always gone a long time between bowel movements, that it had never been the result of digestive or intestinal issues, it was just her way. I insisted that they not give her suppositories every three days. I made it eminently clear that, unless Mom went seven days without a bowel movement, I wanted them to forget the suppositories altogether. I explained my belief that the difficulty they were having with transferring Mom in the Hoyer Lift was probably her way of rebelling against the suppositories and that they needed to stop using them as a matter of routine. I was angry because I had given this information to the doctor when she entered the facility and didn’t know why she was now on this regular laxative schedule without my being informed about it.
The nurse said she was glad I intervened. She herself had been concerned. There had been a change of doctors, she explained, and somehow the earlier orders had been remanded. The nurse acknowledged that sometimes it takes the intervention of a family member to put things right.
I thanked her and went back to see Mom, who was now asleep. I gave her a kiss. She opened her eyes sleepily and gave me a big smile, then fell back asleep.
A week later when I went in to visit, her primary aide sought me out. “Your mom had a bowel movement without a suppository. It took five days, but everything was fine.” I asked if things were going better with the transferring.
“Yes,” she said. “She still isn’t placing her feet correctly, but she is no longer waving her hands in the air trying to push us away from her.”
I can’t say enough good things about the staff at the Alzheimer’s facility. They are very caring and responsive, but still there are times when things slip through the cracks. And with an Alzheimer’s patient, unless you have time to just be with them on a regular basis, and pay very close attention to their motions and emotions, it is easy to miss what they are trying to communicate. I wonder how long my mother had been trying to tell me — trying to tell anyone — about her discomfort. Sometimes all we can do is guess. But guessing with the full weight of knowledge and experience of the person is definitely a little easier. And guessing in a way that includes them, that involves them in the communication, even in the limited ways they are able to communicate, is critical.
Beth Whitman lives in Maine and is a member of Belfast Cohousing and Ecovillage, a developing community on the coast of Maine focused on multigenerational living and sustainability.
I have to agree with this article. I have found in my many years of working with Dementia/Alzheimer that communication is a key factor in the quality of life for the patient. I have dealt many times with families who were unable (for whatever the case may have been) to be there for their parent. Sometimes it was distance, work schedule or the understandable inability to deal with what these horrible diseases were doing to their parents. One thing that always frustrated me was as a Med Aide the lack of knowlege, not of the medications or those things but of family and personal history. I worked nights and often didn’t get to interact with family members, but when I did I would always try to delve into how their parent had been before the illness, what did they like, not like, what scared them frustrated them, caused them to become angry, what kind of traumas had they been through in their lives. Sometimes the kids know what their parents childhoods had been like. These little tidbits which may seem personal or like useless information can be invaluable to a nurse or caregiver in a nursing home or assisted living environment. We had one lady where I worked near the end of life would hit us scream bite and fight everything we tried to do. I speaking with her son one night as he sat vigil by her bedside we found out she had been in a concentration camp. She was in her mind back there and believed we were Nazis and wanted to hurt her. Armed with this knowledge we were able to find a safe comforting way to take care of her for the last weeks of her life. Thank you to all the family members that give us the tool of personal information about their parents, realizing that the patient can’t always tell us what they want or need but good background information can often help us fill in some of the missing pieces for them.
As a 24/7 Caregiver for my husband, I love that you totally understand your mother’s needs and are able to communicate with her. My husband is in the advanced stages of Alzheimer’s at 69 years old. He has other health issues and in and out of hospitals and rehabs for other surgeries. I have chosen to keep him home because even without language, I totally understand his needs. He is so easy to care for even though it is full time. He is happy and secure because he knows that I understand his every need. If he were alone in a facility, he would not be able to talk or buzz for help. He would not receive the one and one that he needs and I am grateful that I can care for him at home for now. Thank you for sharing your story and being your mother’s advocate.
I have been a med aide for many years and work 2nd shift. I always believed that you need to get to know the family in order to get to know the resident. It is amazing how much nicer the residents are when you know their likes and dislikes. I just learned that the reason one residents always goes into the dining room at 3pm and 7pm is because she wants some blueberries with cheerios! We would send her back to her room because it wasnt time to eat and would get her so upset the rest of the day. If you are an aide, please look to the families if the resident is acting out. There is a reason for it!
I lost mom two months ago, she was 96. Im very glad I was able and available to keep her in her home the whole time. She was happy at home. Found some great recipes on YouTube and she loved what I fixed for her. She had gradually regressed with osteoarthritis and dementia to a state of immobility since Dec 2011. She could only sit in wheelchair or lay in bed. Prior to that for nearly a yr and a half, she would get up from bed and walk with her walker, only to fall down. That was a scary time, its amazing she didnt break something. I just lifted her up myself into the bed or the wheelchair, or the potty-chair, and kept taking her to her hairdresser bi-weekly. I tried getting her into a phys therapy program in Jan 2012, but they said she would be to difficult to work with since she had no quality of life and was totally dependent, and medicare would need to see improvement, which wouldnt happen, and I knew that. …. After six or seven mnths going completely immobile, I noticed her muscles atrophying and skin rashes developing. Doctor and dermatologist tried some creams and lotions, but to no avail. The pharmacist recommended sween cream and powder, that was the best. In January this year I tried an in home physical therapy program. The therapist really tried for a few weeks, but he too finally wrote her off. It was futile, but mom was trying….. May of this year, she started struggling to eat, and I was lucky to get something in her, she lost use of left arm, and later in June, the right arm. She started developing pressure ulcers and I was very busy tending to them. By June, she was struggling to hold her head up, and I couldnt get rid of the pressure ulcers and by July they were developing on her at a maddening pace. She couldnt swallow, inspite of trying to eat. Her knees permanently locked and finally her neck did too. She was shrivelled into a fetal position. On her living will, she stated no artificial food or life preserving system at all. I got Hospice in here, and I had a lot of opportunities to talk with her, and tell her how she outlived everything, even her own body, and that she had gone beyond the call of duty out of her love for me. …. I often find myself looking back wondering what I missed, what should I have done that I didnt do. She was still fighting til the end and I always kept helping her to fight. I was the last one to give up on her and had to talk her into just letting go. Moments before she passed I told her Im going to put some coffee on and if she would like a cup before she went, cream and sugar. She cracked a smile on her fixated facial expresion and squinted her eyes. I always made her laugh. I feel guilty about those pressure ulcers, and I think back to the latter part of summer of 2012 when she started te itching and rashes, and wonder if that might not have been the initial signs of her skin breaking down????. …. But I keep coming to the same conclusion… What had been going on with her with the osteo had been going on for many years and the dementia became real obvious four years ago. I dont think there’s anything more I could have done, or anyone could have done…and she was 96.
Mom would have prolonged periods of time without a BM too. But I always had some grapes, oranges and grapefruit for her. Then I’d try and time her next BM and leave her sitting on the potty chair for about a half hour. Sometimes it happened, and then sometimes it happened in her bed. Then I had a lot of work to do.
I work full time in a psychiatric hosp. in the summers i spend a lot of shifts on the senior care unit. Patients have rights, and needs. staff needs to be flexible, and do the right things for the patients.