Category: Assisted Living and Dementia Care

Letting Nature Take Its Course

driedleaf.jpgI learned the phrase “let nature takes its course” late in the game when helping my parents. For those of us who are trying to advocate for a loved one’s wishes, this is a powerful statement to know especially when you are dealing with the medical community.

Most members of the medical community are trained to help sustain or improve life. It took me a while to comprehend why my mom’s assisted living community kept re-initiating vitamins. On a quarterly basis, I would ask to see the medications. Even though they were supposed to contact me BEFORE changing medications, it didn’t always happen and I regularly had to address it. It started when they told me mom was refusing to take the medication she needed that was helping her anxiety, and that was causing a host of other community issues.* When I reviewed her medications, she had a host of daily vitamins. Mom was never a pill-taker, so she was exerting control by refusing to take any pills.

I know that nutrition and vitamins can help with a host of other issues, but I would request at the quarterly review that we discuss the merits of every medication mom was prescribed.

While I (and my siblings) managed through hospice with dad, and then with mom, it wasn’t until she broke her hip that I learned the importance of using this term and for requesting the right consults.

At 84, described medically as frail, and unable to walk on her own, a broken hip is a significant injury. Mom was with her personal care assistant and tried to turn and seemed to fall sideways. Her care assistant caught her before her hip even hit the ground so we didn’t really expect it to be a break. When it turned out to be a break, the aging life care manager I called in for advice suggested that the break happened when mom was turning. It made sense since while she normally bruised at the slightest bump, she didn’t even have a mark on the side where her hip broke.

The choices the orthopedic surgeon offered:

  1. Move her into hospice care with a broken hip;
  2. Remove the Do Not Resuscitate order, put her through surgery to med a broken hip for pain management.

Two totally crappy choices. As soon as they took mom for x-rays, I bent over sobbing knowing that mom was only going to have a few more days or weeks of life. Not the ending anyone wants, but she would finally be able to leave this earth and her dementia behind.

The woman who helped me, Debbie Aggen, RN, CSA, met me in mom’s hospital room and suggested I request a geriatric consult, and use the words “let nature take its course.” The doctor quizzed me a bit on my mom’s wishes, was I sure this is what she wanted? Is this in her medical directives? Thankfully, the answer to both of these was yes.

Mom was too weak to withstand surgery, so our choices became fate. For more than three decades, my mom told me that should she end up like her mother who had memory issues, I was supposed to ‘put a pillow over my head and take me out’. Unfortunately, there are really no options for someone with cognitive issues in the current “right to die” movement.

I never thought this was how it was going to end. Hospice arrived to help us keep mom pain-free while letting nature takes its course. She died on Christmas Day. While it will most likely bring me to tears for years to come, I was relieved I finally helped my mom escape the life with dementia she was living. Granted. 

*There are many schools of thought that with the right care, medication to control behavior would not be needed. However, since she was in a community, we couldn’t control how the other residents with memory issues would interact with mom and she seemed happier when she was taking the medications prescribed. 

Adjusting Hope When The Options Are Bleak

hopeWhen the doctor confirmed mom’s hip was broken, she gave me two options. No surgery, or surgery, but we would have to remove the Do Not Resuscitate (DNR) order in place. Mom has been using a walker while assisted and in a wheelchair for months. She wasn’t interested in working to walk again so the surgery would be for pain management. My guideposts for mom’s care have been how does she feel and how does she look. She should feel as comfortable as possible and maintain as much of her personal style as her health allows.

Of course surgery seemed like the right course, but would they return mom with broken ribs as well after surgery because her heart stopped? As I sit in the E.R. waiting room, I review the hundreds of times my mom said “If I’m like my mother … don’t have my wits about me … am in a wheelchair … put a pillow over my head and take me out.” Yeah, she said this to me in varied forms for more than 20 years. I am glad my mom made sure I knew what she wanted. I’ve been trying to balance her wishes with the real choices we face. We put in the DNR as recommended by her community after she moved into assisted living with dad and was well into a moderate stage of her dementia.

Two years ago we faced many of these decisions for dad who had cancer and was in a moderate stage of Alzheimer’s. Thank you to Kathy S. for reminding me what a gift of love my dad offered by going first. I am so much better prepared to help my mom, but it doesn’t make the choices any easier.

We followed the recommendation for surgery, but learn after a day of tests that mom has both a lung and heart issue that would have to be treated most likely without success before we could again consider surgery. The medical, ortho, and geriatric doctor all recommend against surgery now. The significance of that to mom’s comfort is devastating.

We have moved my mom back to her community and she is in hospice care once again. Through this she has been frightened and tense. My mom never closed her eyes for more than a short blink through 4 courses of morphine the first day. She was so tense, movement was more painful than it should have been.

Now back in her community, we realize she may have had another stroke during the process. One side of her face is drooping and she is unable to really communicate with us now. I am blessed with a personal care assistant who has been with her for nearly a year that knows her well.

For now, I have to adjust my hope to keeping mom pain-free, and that she will join dad after a short visit with her children who all want the best for our mom. Hoped.

Are Angry Outbursts Normal with Dementia?

angryemojiVery early in my journey into life with a parent who has dementia, I read that “meeting one person with dementia, is like meeting one person with dementia.” We all want rules to follow, guides to help us know how to help our loved ones, and simple answers. That just isn’t possible given all the types of dementia and types of people.

While my mom would become very argumentative, my dad did not and seemed to fade away. As I watched two parents with different dementia’s and managing through varied life changes, the only rule I found was that being calm and positive were the only emotions to bring to a visit.

When mom would get argumentative, initially I would engage, just like I always did. We were able to disagree and challenged each other from silly to serious topics.  When I realized our conversations were only making mom angrier and more agitated, I changed. It was not easy.

I recognized that my mom was losing the ability to change, so I needed to change. My sister-in-law who has been helping individuals with head injuries for over two decades always had good advice. At one point, I realized that if I considered that mom had an external head injury, the changes in her behavior made more sense to me and it was easier for me to change to adapt to the battle going on inside of her that I could not comprehend.

After my dad died, my mom was having a lot of conflict in her assisted living community. I always knew that together my parents were better. Without my dad as her companion, my mom no longer had something that constantly grounded and provided her with comfort. She started to verbally and physically act out. This was one of the reasons I started to search for a new community. Mom was not in a place that could support her needs.

I am not really going to answer the question I posed, because I still don’t know if anything is “normal” with dementia beyond the aching sense of loss we all experience. Changed. 

Pop-Pop would be proud

My son, who has just graduated high school, joined me on my visit with mom today. He is leaving tomorrow for the outdoor National track meet. He worked hard to qualify and proud seems too small a word for me to describe his accomplishments.

When he tells my mom, she quickly responds “Pop-Pop would be so excited for you if he were alive.”

I choke out a response about dad being able to cheer him on from above. My mom has never really talked about dad. It was heart-wrenching the first few months when she just wanted to know when he was coming back to their apartment. Now, she fully grasps that he is gone and her comment was a wonderful response to a momentus accomplishment.

My moms comment is so clear, normal, and true. I got a glimpse of the  gracious, witty woman who loved and admired dad too. Awe–struck.

The Sneaky Poke and a New Connection

handforpokeI’ve had to make an adjustment to how I visit my mom. The community is dedicated to memory care so on any visit, I could be walking in to find a resident who is frantically searching for their dog and asks for my help, or one that has just decided to follow me and is trying to walk out the door with me when I leave.

I’m slowly getting to know the other residents. A few immediately made themselves known to me, but many of them don’t speak so it takes time to get familiar with the residents. On a beautiful day, we go outside to sit under the gazebo. One resident settles in next to us but doesn’t speak. A second resident walks by and we invite her to come join us. As she gets ready to sit, the first resident reaches out and pokes her right in the behind. I giggle and make eye contact with the woman who did the poking and she winks at me. She tries to speak but garbled words emerge but she continues to smile at her prank.

Thankfully, the second resident doesn’t mention it and joins as we discuss the beautiful weather. I saw how the disease changed my parents in two very different ways. Now I’m seeing a whole new host of behaviors. Some of the residents are delightful and always smiling and others are argumentative and confrontational.

For years, my mom swung between behaviors and I learned Three Go-To Tactics for Dementia Caregivers that served me well. I believe the lion emerges when she’s frightened and confused. We worked with her doctor to find a medication that would help as well as a found a new community that is dedicated to supporting those with dementia.

I grew up moving a lot and learned to take everyone I met as they are and quietly watched to see how they behaved. My habits have had to change and after watching dementia in my parents and in others, I don’t believe that man who repeatedly bangs his walls with his hands had a violent personality before or the woman who will come up and tell me to go sit down was bossy before dementia. It’s such a cruel disease that steals so much from all of us. Acknowledged. 

Mom walking – what a beautiful sight!

black KedsWhen I arrived to visit my mom the personal daily assistant (PDA) was working with her. My mom was on her feet and walking along the hallway hanging onto the railing. I feel excitement being able to witness such a noticeable improvement in mom. After years of living with dementia, I have not expected to see any improvements in her quality of life. We had hoped that getting her out of the wheelchair and back on her feet would return to my mom a sense of control. For several months she’s had to rely on someone to help her toilet, change, shower and simply move.

We are working with a therapist to get mom’s legs stronger and work on her balance. That is a tall order, but given how tenacious mom has been through many other set-backs, I’m starting to feel hopeful.

Within hours of returning home I get a call from her care manager with hospice. She touches base with me weekly and we chat through mom’s status and outlook. She tells me that mom is really low and wonders if that is normal for her. I explain that since my dad’s death, my mom has told me she is unhappy and doesn’t know why she’s still here.  I’m relieved to hear that my mom shared her feelings with the care manager. My mom has always been a very private person, and the wall she kept up has been in place even though her dementia has progressed. It seems like the wall is falling. I explain to the care manager that I discussed this with the doctor and wondered if we could find a “happy pill” for mom. While I would like to find a solution, I’m also concerned given how the pain medication Tramadol affected my mom. Would a mood pill come with the same risks? They were going to try something, but she doesn’t see that anything has been prescribed and will follow-up with the doctor.

I share with her my wish that we were in a state with medical marijuana laws. I’ve heard many reports that pot brownies have been very successful supplements for individuals suffering from dementia and feeling low. I know my mom would not refuse a brownie … ever.

I won’t let this news minimize my mom’s progress in a positive direction.I still believe getting my mom back on her feet will bring a mood enhancement for all of us. Celebrated