Category: End of Life Choices

How the Game of Thrones Soothed my Caregiving Guilt

downloadMy son got me hooked on “Game of Thrones” a few seasons ago. When he left for college, I realized I would no longer have a viewing buddy. My daughter quickly volunteered which meant there would be hours of TV getting her up to speed on the show.

During the 4th season, there are a few scenes in which people were dying and out of mercy, someone put a knife through their heart, or slit their throat. My daughter wondered why they would do this, it struck like violence, but in reality they were exhibiting mercy. It was the only way to help them avoid lingering in pain. As my daughter expresses dismay, we start to talk about it and I immediately recognize the complexity of mercy.

For anyone who has managed the hospice journey for a loved one, you understand the conviction it takes to be bedside and demand more comfort medicine.

You watch as your loved one’s body fights, even against what you know to be their end-of-life wishes.

I still feel conflicted about the last week of my mom’s life. She broke her hip and surgery was not an option; she had a stroke and no longer recognized me; she was unable to enjoy chocolate and would pack it in her cheeks; she was frightened and uncomfortable. We did what we could to bring peace. Now it’s time for me to find my own. Battled. 

23% of Adults Between 45-64 are Caregivers?

CaregiverTableAccording to Pew Research Center, adults ages 45 to 64 are the most likely to be caregivers. In fact, about a quarter (23%) of adults ages 45 to 64 cares for an aging adult.

Then, for those over 65 – 17% – serve as caregivers for another aging American. Many in this group are caring for a spouse or partner (29%) or a friend or neighbor (33%).

When I see that 40.4 million American’s are caregivers for adults 65 and older, I wonder how we are going to manage as a society. What concerns me most is that most American’s do not have basic estate plans.

To be clear, I really don’t care about wills, I want you to understand that every adult over 18 should have a Durable Power of Attorney which is the legal document that names someone to act on your behalf financially; and a medical power of attorney that allows someone to be your medical advocate. These two documents will impact your life when you are LIVING.

We all need these, even in our 20s. By 65, seven out of ten American’s will require three or more years of long-term care. Someone in your life will need these legal powers to help you. Please contact a local estate attorney and get these done, they cost as little as a few hundred dollars. Please know that being married doesn’t mean you automatically have someone that can fill these roles for you. They may not be named on your account, they may not know where to find your account information, they may not know your wishes.

As the person who was the caregiver for my parents financial, medical, and personal needs and wishes, having the information to help them was so important I launched a business to help every American get their own information organized.

After caring for both parents through death, I recognize how much having this information organized made this difficult emotional task easier. I wasn’t worried about account details or where to find documents. I could focus on fulfilling my parent’s wishes for end-of-life. Nothing makes that easy, but at least it was all I really needed to address when that time came. Recommended. 

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.

Caregiver Alert: Are you experiencing “Compassion Fatigue?”

splatterDid you know that the feeling of anger, poor self-care, substance abuse, and hopelessness could be caused by “Compassion Fatigue?”

Today, I heard Stephanie Chong, LCSW-C discuss this term. I immediately felt a bit of relief knowing that it’s quite common within the caregiving industry.

Compassion fatigue, also known as secondary traumatic stress (STS), is a condition characterized by a gradual lessening of compassion over time. That is a very basic definition and Stephanie went on to discuss what this fatigue can lead to which includes symptoms of isolation, preoccupation, apathy, substance abuse, poor self-care, hopelessness, physical and even mental exhaustion. Now that I’m in about my 5th year of being the primary adult caregiver to two, then one parent, I’m concerned I am exhibiting some of the symptoms.

While I don’t feel less compassion to my mom or those who care for her, I’m feeling more anger around the need to constantly provide those in her care circle with insight into how my mom wanted to live out her final years. Because the job for caring for others can cause both compassion fatigue and burnout, there is a steady stream of new faces over the course of a year that help care for mom.

My last post “When More Translates to More Options for Failure” sure sounded a bit hopeless. Many of you have helped turn this into a digital caregiver support group for me. Thank you readers and comment-ers alike! Keep it coming.

What has been weighing on me is the constant need to advocate for my mom. I feel like I’m constantly telling a new member of her care team that mom wants to be happy and comfortable, but doesn’t want measures taken to extend her life. It gets uncomfortable when I need to follow-up with specific things to not do for mom, but also make sure they know I appreciate their help.

My mom was quite specific about not wanting to be spoon fed. Telling someone the thing they are doing as an act of care, is not what my mom wishes is painful to both of us in the conversation. While I don’t want to have the conversation one more time, I know I will need to because it is what my mom wanted. I need to be her advocate.

But it’s painful and I’m tired of having the conversation. The last time it happened I didn’t say anything. I started to doubt myself and wondered if I need to let them feed her because she hungry. However, she is totally capable of feeding herself.

I’ve used quite a few of the healthy coping mechanisms. But now that I have an awareness of this I also now have some other tools to help me the next time I need to have the strength to ensure mom’s wishes are being fulfilled. Soothed.

3-5; 5-40 – I will never give up. Why would Mom?

nevergiveupFor those of you that play tennis, as the person who was serving at 5-40 when the game score is 3-5, you know I’ve dug myself a pretty good pit. Sadly, this type of situation is a bit of my tennis game calling card. With my partner, we went on to win the set 7-6.

I love competition and in this situation, all I can say is “never give up, never surrender” which is just a silly line from the movie Galaxy Quest. I will focus on just playing that point and plod my way on. I won’t recognize a lost match until the final score actually has me losing. I am a little worried that is not always a good thing.

I recognize, the apple doesn’t fall far from the tree. My mom is a fighter and has rebounded through issue after issue. In my last conversation with the hospice care team, I again requested that we consider something for mom’s depression. She seems infinitely sad on most visits. It’s easy to find ways to brighten her day, but I know that she’s dealing with the loss of freedom, understanding, and independence as her cognitive abilities decline.

The doctor has approved a new medication that should help her depression as well as will increase her appetite. All things considered, who doesn’t want to die fat and happy? Questioned.

How much of me is me?

teacupsWhen we moved mom into the new community, they warned us about her teacup collection. They were worried that residents would be attracted to the cups and saucers. My mom has a lovely collection that has been in her primary living residence for at least the last two decades. I wasn’t moving mom in without them. We also left on her rings. My mom didn’t need anymore changes and we felt the symbols of her possessions were worth more than protecting them from loss.

When they called last night to tell me there has been an accident and a resident knocked one of the display shelves off the wall, I wasn’t surprised. However, I was somewhat alarmed. What was someone doing in her room at 9:45 PM? My mom is usually asleep by 7:30 PM and her PDA leaves at 8:00 PM.

When we first moved mom, my sister mentioned that I should ask for a locking door. I asked the first week and it dawned on me that I never got an answer. Today I was told they won’t put locks on doors for residents that can’t remember how to open locked doors, could my mom do that? I am not sure.

As I’m looking at her cup collection, it dawns on me that a few missing cups won’t really change the collection. She will still have something to look at. However, it makes me envision my mom as the collection. How much of her is missing now?

I recently posted my internal struggle with how to manage mom forward and consider the options in front of us. The slogan “If I’m not me, I don’t want to be” rattles in my brain. I don’t think we have the right options, but I really don’t know how you would measure “me-ness.”

My mom doesn’t recognize me on most days now, but she is pleasant when I visit. She would prefer to nap and eat cake, but I can’t really fault her for that.

I know a day will come when I visit my mom and no teacups are left. I will cross that bridge when I come to it and enjoy the collection that is left for me to visit. Foreshadowed.