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Palliative vs Hospice Care?

pileofquestionsI’m still a little fuzzy on the distinction because what I heard (which might not have been exactly what I was told) differs a bit from what I’ve read. I find that there is generally conflicting information on the nuances between these two levels of care and each provider is a little different. However, we are going to move past that sweeping disclaimer and I will share with you how I view these two services and the role they have played in the care of my parent’s.

When my dad, who was in a moderate stage of Alzheimer’s, was diagnosed with a cancerous tumor on the back of his tongue, we pursued treatment options and realized, not only was he not up to the fight, but before we even got to treatment options he would have to be put under anesthesia just to clean his teeth. I saw how poorly he responded after being put under anesthesia to mend a broken hip and that news was the final straw. We called in hospice to make him as comfortable as possible. He was in his apartment with my mom for about a week after understanding his diagnosis. He was in a lot of pain and had fallen trying to get to the bathroom in the middle of the night so we had him transferred to the hospice facility. He passed after the first night in the hospice facility. The team worked to keep him comfortable. We were shocked to have him go from diagnosis of a tumor to death in exactly 4 weeks. For me, I’m glad he didn’t suffer any longer, but I still cry over my loss.

Mom was admitted into hospice care after she complained of back pain, was treated with Tramadol, and for the lack of any other way to describe it, behaved like an overdosed hippie. She could move but not manage to even stand or follow simple instructions. She tried to talk but she only spoke soundless words. I wasn’t really clear that she was in “hospice” until I called to have the doctor explain it to me. It took several weeks for her to interact with me and she required a wheelchair after being bed-ridden for so long. I still wasn’t sure what it meant until as my mom began to improve, I asked if physical therapy (PT) might help get her back on her feet and was told that PT isn’t something you do with a hospice patient.

In short, I believe hospice focuses on comfort when a terminal illness with a near-term end-of-life is expected, and no therapy would be provided to improve quality of life. Palliative is geared toward those who aren’t looking to extend a life, but want to be comfortable. Generally, most with varied forms of dementia are in palliative care since there is usually a longer life expectancy.

It’s all confusing and each bit of information seemed to foster another questions. It has served me well to meet with the medical and care team and explain our goals for my mom’s care. It never hurts to ask. You know your loved one best, so do what you feel is right. Satisfied. 

For deeper answers on this topic, please visit the following:

The Layperson’s Guide to Palliative Care

The Layperson’s Guide to Hospice Care

What Palliative and Hospice Care Mean Are Not the Same!

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Understanding Your Life Stage and Caregiving Skill Set

keruppertI was interviewed about my caregiving journey by Kenneth E. Rupert who received Board Certification from the International Board of Christian Coaches as a Master Christian Life Coach in 2012 and founded The Vita-Copia Group to offer life coaching services with a concentrated focus on caregivers.

When managing my family, life, and my parent’s needs grew overwhelming for me, I engaged with an executive coach who happened to also be a Christian. She taught me how to better manage all the aspects of my life from family, faith, community, and career. A huge factor was to embrace my faith and to be more mindful to the things going on around me. The process and the woman was invaluable so that I could manage as the caregiver for my parents. Lynda Alicudo is one of two women who I credit with helping me launch MemoryBanc.

The complete article Ken shares can be found here, but I wanted to share a brief snippet of his life stage classification system which is an insightful way to look at the skill set you bring to the job as a caregiver. In his article, he lists the four stages as:

· Discovering [childhood] (0-19 years)
· Establishing [young adulthood] (20-35 years)
· Accumulating [middle adulthood] (36-60 years)
· Distributing [late adulthood] (61-the rest of your life)

He goes on to speak about how these varied stages intersect with caregiving. I realize that hiring a coach as I began the difficult work of becoming a caregiver was one way to help build a strong and adaptable foundation so that I could manage this journey.

To learn more and get some tools to help you manage on your journey, here is a link to Ken’s author page on Amazon. Recommended. 

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Lost in Translation: Recognizing the language barriers and today’s caregivers

twopillsOver the past year, I have interacted with at least 20 different individuals who have been involved in the care of my mom in which english was a second language. There were several phone calls where I had a very difficult time understanding the person calling to report on my mom. I also witnessed several times where my mom had trouble understanding her caregiver.

I appreciate the wide variety of individuals who have helped my mom. Luckily, because I live nearby, I could follow-up in person which made understanding the conversation easier.

Usually, this hasn’t been a big issue. However, last fall, when my mom started to have back pain, during the medical consult, I heard that they were going to give my mom “Tylenol.” I didn’t think much about it, but the medicine resulted in her transition into hospice. It was more than a week before I understood that my mom was given “Tramadol” not “Tylenol.” Within one day of the new medication, my mom was unable to interact or control any of her movements and I was totally confused about what had happened.

I now question and ask about possible side-effects even when I just think it’s just over-the-counter. Maybe that would have helped me understand what my mom was being prescribed. I have done this when something new was recommended, but it didn’t dawn on me to ask about “Tylenol”. There are so many varieties of dementia along with other drug interactions that can happen, it’s worth asking the follow-up questions to eliminate any misunderstanding. Suggested. 

 

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Purpose is a Robust Predictor of Health and Wellness

A growing trend amongst us boomers is that we have been steering clear from the word “retirement.” Personally, watching the decline in my parent’s when they “retired” is why I’ve been planning on working, in some form, as long as I’m able to contribute.

I recently stumbled on an article from The New York Times called “Living with Purpose” that reports:

So not only is my wish to have meaning and purpose in my life and contribute back to my community, but that need is also a factor to help keep me healthy.

While my journey as a caregiver has been long and impacted my life, it’s also fueled in me what I believe to be my purpose in life. Driven. 

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How Activities Benefit Individuals with Dementia

bingoOne of the things I appreciate about my mom’s new community is the depth of knowledge the surrounding staff and volunteers bring to help deal with a wide variety of individuals with varied dementias. I also know we are lucky to be able to afford to have mom in a community where she gets to socialize and her days are filled with activities.

When I visited the community during Bingo, the woman leading the activity exudes positivity and joy. She also shares many funny stories about herself and manages to recognize the residents during her “bingo calls.” The amount of confusion by the players at our table is noticeable, but it’s managed so well that many of them made it to “BINGO.”

I was most intrigued by two women at my table. The first was the woman sitting next to my mom. She either can’t process the letter and number combination or hear, so after EVERY call she asks the caller to repeat the letter and number. The caller repeated it patiently at her request but by the time she turns to look at her board, she has forgotten the number. When it’s repeated to her, she immediately refuses the information. When she got close to having Bingo, she would clear her board and then comment that the game is “boring.”

The second woman who most interested me was my mom. She could easily follow along and in-between putting down her chips tried to help the first woman I mentioned. Halfway through, my mom suggests that we just need to let her be and have fun however she wants to play this game.

When we leave, my mom tells the PDA pushing her wheelchair to “get Kay up here.” It’s the first time in several months that she has used my name. It’s easy for me to see that my mom is adapting to the community and now she is benefiting from the ongoing activities.

I marvel at the constant change in my mom and it’s not always bad. She has no short-term memory and can’t even recall most details about her past. She still knows she had 4 children and our names, that she was married to my dad and that he has left this planet. Maybe that is all that is important now. Soothed. 

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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

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My mom had a stroke, what do I do?

stethoscopeHeartOver the past month, I have had several friends tell me a parent is having trouble medically and they are unsure of what to do. In the midst of a crisis, having the conversation about how to help often comes across as gloomy, as if you don’t expect them to get better. It’s why I suggest that you have the conversation early and often. If it’s part of general conversation, exchanges of ideas, hopes and wishes, it is not gloomy. When you discuss your options before there is a crisis, you have a lot more choice.

Many of us realize that after mom or dad had a medical issue and now needs more care. Your options are limited if you are doing your selection from those facilities that can take you; or interviewing those caregivers that are available.

While I was frustrated by my parent’s unwillingness to share or curb their life based on limitations that came from the aging process, I totally understand it now. I crave to give my mom activities that would fill her with meaning and purpose. Now that I am managing everything, I sure wish I could share some of the duties with her. It would make both of us happy.

After the critical incident, you do what you can, as best you can. Take a moment to consider how many people are aging without the help and support of a loved one. I am proud of how I’ve worked to help my parents. As difficult as my job has been, it’s infinitely easier because my parents were quite clear about their thoughts on life and living. We watched two grandmother’s fade with dementia, and we discussed it. My siblings are also supportive and we used this to bring us closer together.

My hope is that you don’t repeat the mistake that put you in this position. Your job is to:

  1. Get your stuff organized
  2. Define your wishes using The Conversation Project to get talking or Five Wishes to create a plan that is legally binding in 42 states.
  3. Work with an estate lawyer to get at least  a durable power of attorney and medical directives in place (if you don’t use Five Wishes)
  4. Discuss your wishes and plans with those people who would be the ones to step in and help you.

The U.S. Department of Health and Human Services reports that 7 out of 10 people turning 65 need long-term care services averaging 3 years. To me, that confirms that most American’s will have to accept that another person will be making choices about their healthcare, finances and living arrangements. Have you made sure those who will fill this role know what you want?

My siblings and I have made many decisions for my parent’s. The most difficult was having to opt not to start cancer treatments for my dad who was in a moderate stage of Alzheimer’s. Just the thought of this decision still brings tears to my eyes. However, I know we made the right choice for him because we had conversations about quality of life for years leading up to this event.

Four products to help you navigate these choices include:

Five Wishes lets your family and doctors know:

  • Who you want to make health care decisions for you when you can’t make them.
  • The kind of medical treatment you want or don’t want.
  • How comfortable you want to be.
  • How you want people to treat you.
  • What you want your loved ones to know.

The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care

The Roadmap to the Rest of Your Life by Bart Astor will help you hone in on the options and the choices that you need to consider.

MemoryBanc: Your Workbook for Organizing Life is a practical system to help couples share account numbers, usernames, and medical and household details so that they can stay on the same page; it also provides individuals a solution to easily share this information should they ever need a loved one to step in and help them.

 

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