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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. 

 

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You know but you are never ready: Dementia stinks

steepdeclineI have mentioned how often I’m asked about my Mom and I never seem to have a positive answer. I try to remind myself just to thank the person for asking instead of sharing any one of the negative thoughts clouding my mind.

I knew my Mom was going to decline, but as we were on the brink of moving her into a memory care community, her sudden change has thwarted the one positive thing my siblings and I were working toward. She is now unable to move on her own and is mostly bedridden. That is a stark contrast to the woman who was walking the halls just two weeks ago.

Thank you for the kind notes from my fellow bloggers: Mrs. Hsg with Before I forget who has been diagnosed with early onset Alzheimer’s; Joy Johnson with The Memories Project who started her blog as a tribute to her father who suffered from dementia and then needed to care for her mom who was battling cancer; Hallie Swift with A Swift Current who artfully shares her tales of caregiving and loss;  Mariarose of With and Without Her who recently lost her mom to dementia; Sandra Ross with Going Gentle Into That Good Night who shares her knowledge and experience generously; and the many others who aren’t bloggers but reached out. THANK YOU. This journey is tough and hearing from those of you who have gone through it, know it’s coming, or shared encouragement reminds me how much I benefit from this blog emotionally.

We know they are declining, but you never expect the sudden drops that unfortunately, are all too frequent. We also have seen some moments of clarity over the last few days, but know that the inability to manage for herself is gnawing away at my Mom’s will to continue. Shocked. 

 

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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.

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Dementia and Disagreements: No one wins

unwontictactoeFor me, morphing from adult child to caregiver has taught me much. One of the hardest adjustments is leaving behind your past and learning that as the disease progresses, no one ever wins disagreements. If a discussion is getting contentious, it needs to end without anyone emerging “right”.

This was tough for me to learn because in our family, debates and the exchange of ideas was a tradition at our dinner table – even into adult hood. As mom’s disease progressed, frank discussions, or any disagreement brought out the lion. She would just become combative. Medication has helped and she is much less suspicious and disagreeable now.

It took me time to learn, but I began to redirect, let go and change the topic when a disagreement was coming. I’m not perfect at it, and on a bad day, I still struggle to overcome the old patterns of our decades-old relationship.

While the behavior changes in my mom felt personal, I never felt that way with my dad. You constantly wonder if the disease is just erasing a filter and their real personality and nature is emerging. As my mom has progressed into the disease, I have seen so many other changes that I’m convinced the combative and disagreeable woman my mom can become is not a personality quirk that she hid from me for many years.

In the first few years of the disease when we just suspected something was wrong but had no medical confirmation, I had a lot of arguments with my mom. The inability for us to have a disagreement without being disagreeable was one of the reasons I was sure something had changed with my mom.

We watched and witnessed many changes in our parents and worried for their health and safety. We finally learned that no one wins with dementia. Loser

When you are moving into a disagreement, consider:

  1. Emotions linger so avoid becoming angry or confrontational.
  2. The loss of short-term memory works to your advantage. Consider excusing yourself and going to the bathroom to wash your hands, when you return, you can start a totally new conversation.
  3. Emotions spread, so arrive with a smile on your face and a relaxed attitude.
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When a visit with mom goes bad – Is it me or is it her?

pushI had a terrible visit with my Mom. Things had been going so well and while I was saddened by her decline and inability to remember me, she has been pleasant to me for several months. It made me wonder, was it me, was it her, or a little of both?

She was happy to see me, but started to get contentious over the ice cubes, her laundry, the trash can liner. When I told her I started a load of laundry when she was finishing up her BINGO game, she challenged that I would be so “presumptuous” as to take her laundry and put it in the washing machine. When I told her it was in the laundry basket, she backed down. When she wanted ice cubes and there weren’t any in the freezer, she wanted to know why I took all of the ice cubes. When she saw trash in the garbage can without a liner, she wanted to know why I put trash in the can without a liner. I hadn’t done any of those things, but had simply arrived and started a load of knowing we could finish doing it together.

I recognize how frustrating this disease must be to the sufferer. My Mom has always been independent and resourceful and now she needs help. She doesn’t like it — I know I might not do so well under the same circumstances.

I marvel at her ability to easily and succinctly chide me for a perceived wrong and then be unable to finish a sentence when we are chatting about the family.

As I was leaving, I wondered if somehow, she could feel my frustration today. I thought I left my worries at the door, but did I somehow move too fast or rush her through a task that just made her mad. I remember something Bob DeMarco wrote about his mother Dotty who would say “No Push, Push” when the pace of activity was too rapid for her to process. Had I moved too fast today?

Lurking in the back of my mind, I wonder if she forgets I’m her daughter and just thinks I’m messing in business that isn’t mine to manage. Contemplated.

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What are you going to be doing in your 60s and 70s?

questionsignUSA Today just reported that life expectancy in the U.S. hits record high. Ladies who are 65 are expected to live to 81 and the gentlemen to 76 years. What are you going to do with your time?

I’m obsessed with ensuring that I continue to exercise, contribute to my community in meaningful ways and stay engaged socially. Many studies report that these are the three most important elements to aging well. The tough part is making sure that I have the wealth and health to afford these luxuries.

Have you begun to envision your future? A great book I recently found is Roadmap for the Rest of Your Life: Smart Choices About Money, Health, Work, Lifestyle … and Pursuing Your Dreams. There are many life stories interspersed and you quickly understand how many people find that the typical american dream of retirement doesn’t suit their abilities or their interests.

The time to start planning is best done in your 40s and 50s … when it feels far away. I hope you will hit your local library and check it out. Recommended. 

 

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Stopping Scammers Together

oldphoneAt the local community center, I’m involved in the Lifetime Learning program and teach a class on how to organize and protect personal information so it can be easily found, or shared when needed. There are great discussions in these sessions and last week, one of the participants shared the recent article written by Michelle Singletary with The Washington Post titled Let’s Band Together to Stop Scammers.

Fraud affects everyone, but many of the scams are targeted specifically toward seniors. The one that surprised me was done by telephone and the individuals talked their target into giving them online access to their computer. They would say there were calling to update the software or trouble-shoot a problem identified with the machine and during the process access the hard drive and steal personal information stored on the computer. The typical result is immediate fraudulent use of credit card information stored on the computer.

My family went through a period of several years where we were concerned that our parents would be scammed. Not only did my Mom seem to misplace her purse weekly, but we had one instance where my Mom called my sister (who is a lawyer) at 2 a.m. in the morning worried about some home improvement contracts she signed. For the same work, my Mom had signed one contract for $800 and another for over $5,000. We assume my parents forgot they signed one contract and hired a second company to handle the repairs. When I arrived the next day, my Mom had forgotten the call and it took a while to uncover the two contracts. We were lucky she told one of us about it and we could intervene to help.

There are so many types of scams, but in general it seems that when in doubt, you should check it out. Never give information to someone over the telephone asking for personal information. AARP has a Fraud Watch Network that is free. You can enroll online and receive both electronic information as well as updates in the mail. The crooks are crafty and have made stealing our identity and money their full-time job. Forewarned.

 

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