Tag: pain

No one cares about me

threeringcircusMy caregiving journey has moved from tasks I can manage by myself to a three-ring circus. Under the three tents we have:

  • The Assisted Living Community: The center ring that has the overarching task of care, but also has the least amount of bandwidth with very busy employees who care for many residents with a wide variety of needs.
  • Hospice: The second ring that is our resource to help my Mom be comfortable as she moves through the final stages of her dementia.
  • Personal Daily Assistants (PDA): Now that my Mom is unable to leave her bed, we have hired additional personal assistants who can be with Mom from 8 a.m. to 8 p.m. to keep her company, comfortable and cared for.

As we move through this change, we are hitting a few bumps in the road. Today an adjustable hospital bed arrives  and I start getting calls from all three parties. I was told I would be called when it was scheduled, but was not contacted. In the course of one hour, I speak with all three and we put a plan in place to manage the simple task of removing one bed and inserting the new one until I can drive over.

When I arrive my mom is half asleep. The morning PDA tells me Mom has been up most of the morning with all the bed-moving activity. I sit by her bedside and wait for her to stir.

I made a pledge when this journey started that I would always tell my parents what was going on at least once. I wanted to not just repay them with respect, but treat them as I would want to be treated.

When my Mom wakes I ask her how she’s doing. She starts to ask questions. It’s hard for her to speak now; her voice has changed and she has trouble forming words. She asks where her bed went and what happened to require this new bed.

I tell her that her back hurt so much she didn’t want to get out of bed two weeks ago. All tests came back negative and they tell me it’s osteoporosis. I let her know they ordered this bed in hopes of getting her comfortable. We spend the next hour cycling through her asking to get up but being unable to stand any movement. As soon as we get ready to help her move she yells “Wait a minute, wait a minute.”  We never have the chance to really help her move out of the bed, she seems to be afraid that moving will hurt too much. The PDA is with me and we try to arrange the bed to get her more comfortable. She is frustrated at this new development and just wants to do things for herself. She keeps asking how she ended up this way.

In the midst of all this, she states “No one cares about me.” My brain stalls as I imagine how lonely and frightened she must be even now when I’m sitting next to her. She doesn’t always know I’m her daughter, she doesn’t remember that her other daughter just visited and spent three days with her, she doesn’t know that her two sons immediately made plans to visit when I told them that hospice was recommended. My first instinct is to put my hand on her hand and I lean down to give her a kiss on the head and tell her I love her and that all of us care about her. I immediately walk out of the room before the tear falls from my face. Juggled. 

 

Dementia and Pain Medication: A Debilitating Cocktail

poisinLast week, my Mom’s back pain was so bad that she declined to get out of bed. She has complained of back pain on and off for a year, but it was never more than a minor complaint and one that she refused to take any medication to treat when offered. After the basic testing, it was determined to be related to her osteoporosis.

She has a general aversion to taking pills, always has. In order to make sure she got the dementia medication that had calmed her paranoia (Risperdal), we eliminated several vitamins she was taking. After this change, the nurses were able to consistently ensure she got her medication.

Over the past few months I have noticed her shoulders rounding and her gait changing. She still loved to walk and was often seen roaming the halls of the Assisted Living community.

The second day of her pain, my Mom started to cry out when they would help her get to the bathroom. They gave her a minor dose of a pain medication, but within a day, she became almost catatonic. The next evening, they called to ask me if I would like her to go to the Emergency Room. I declined since there was really nothing the hospital could do to help my Mom and I know a change of scenery would only be worsen her condition. They switched the pain medication and only administered it after she exhibited symptoms of pain. Unfortunately, my Mom was now unable to move or speak. She also was refusing food.

The change was so dramatic my first question was if they had over-medicated my Mom. They switched the medication and there was no change in my Mom by day 2 except that she was no longer crying in pain when they moved her. She could only be moved by wheelchair and was unable to even hold a drink to her lips. When I asked her questions, she mouthed soundless words to me.

I follow-up with the head nurse on day 5 and after checking on my Mom they suggest we call hospice and have initiated a consult. I still am not sure if this is a “pain medication hangover” or if my Mom’s dementia has suddenly taken her down to nothing so quickly. Bewildered. 

Related Topics

There are many studies of pain medication and dementia issues. One helpful site listed the Drugs to Avoid in Patients with Dementia.

A key topic of interest to me is the idea that agitated dementia patients feel pain, but can’t verbalize it. I hope you will share any recent studies or news stories you have found on this topic.  The most recent one I found is from The National Dementia Support Program in Australia.