Tag: death of a parent

You have been diagnosed with Dementia. Now What?

I am guessing that many of you share my fear of dementia. For those of us with loved ones who have lived with it, we know how devestating it is for the individual as well as the loved ones that surround them. But it doesn’t have to be. Once diagnosed, you have so much opportunity to direct, manage, and guide your life.

When the outcome wasn’t quite what you wanted.

I believe that the numbers reported are low because many people just don’t pursue a diagnosis. It is important to get a diagnosis for many reasons. The first is planning. If you know what you are facing you will be better prepared to plan the rest of your life.

As a Daily Money Manager who works mostly with individuals who have cognitive impairment or dementia, I know that not planning ahead or documenting personal wishes about future care and life choices most often results in guilt for those around you that will help. How will they know what you want if you are not explicit?

I know this after being the local adult child caregiver to my two parents with dementia. My parents had advanced care directives, but the most valuable guide for me in their care was the conversations we had around the dinner table. I knew that my parents wanted QUALITY of life over QUANTITY.

When my Dad was diagnosed with a tumor on the back of his tongue and in a moderate stage of Alzheimer’s, nothing in his care directives spoke to such an unusual situation.

When my mother broke her hip and the Doctor wanted to lift the Do Not Resuccitate order at the hospital to operate on her, I knew she would want me to tell them to let nature takes it’s course.

Ohhhh, but I still have guilt plaguing me about my decisions. I made the best decision I could at the time with the information I had.

The best way to ensure you get the care and support you want as you are living with dementia is to provide written (or video) of your specific care wishes. Use real-life sceanarios around you to tell someone what choice you would make if you were in a similiar situation.

Even if you have estate plans in place, now is the time to visit an attorney to update your plans. There are a variety things you can do to be an active driver for the rest of your life.

There are a wide variety of adults living well with a dementia diagnosis. Check out my favorite champion (who has gotten 3 advanced degress since being diagnosed more than a decade ago under the age of 50) Kate Swaffer https://kateswaffer.com/. Awed.

Making the Best Choice Medically for Mom & Dad

One of the toughest challenges I faced when caring for loved ones with dementia were the medical choices for non-dementia care issues that erupted and threatened my parent’s well-being.

A recent opinion piece in The Washington Post by an Emergency Room physician titled Doctors are torturing dementia patients at the end of their life. And it’s totally unnecessary illuminates the reality of the choices families face when caring for aging parents.

My family faced these difficult choices twice.

My father in a moderate stage of Alzheimer’s had a tumor on the back of his tongue. Knowing our parents were doing better together than they would alone, and in the hope that we would eliminate the pain my dad was feeling but could not verbalize sent us on a path to try and treat his tumor. After a week of medical visits we saw that our dad was not up for a fight with cancer. We worked to find him some relief through hospice care. Thankfully, his end came quickly.

When my Mom broke her hip in her Memory Care community and ended up in the hospital, I knew the end was near. The recommendation was to perform surgery but that required we lift the Do Not Resuscitate order. My mom no longer knew my name and I wondered if the stress of the trauma resulted in another stroke. I had to repeatedly ask that we let “nature take its course” while the hospital kept trying to certify my mom for surgery. My mom was clear that qualify of life was more important than quantity, and I knew the surgery would be painful and not provide improved quality to the rest of her life. Thankfully, the medical team agreed that she was able to survive surgery and we moved her into hospice care.

I still end up in tears recounting both of these stories, however I know it is important to make sure other families know that it could be one of the greatest acts of love you offer by taking the path of least medical intervention. I’m glad to see Dr. Geoffrey Hosta share his medical insight that reaffirms the choices my family made. At least I know we did our best to honor their end-of-life wishes. Reflected.

What I Wish I Knew When Dementia Was Diagnosed: The role of Palliative & Hospice Care (#2)

Palliative-vs-HospiceMy parents and in particular my Mom often shared that QUALITY of life was her goal, not QUANTITY. After a diagnosis of dementia which can result in death, I had an ongoing struggle with what was important to do to honor my mother’s wishes.

The lines between “palliative care” and “hospice care” are confusing but they both focus on providing comfort. Palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness. These lines are kinda blurry with dementia since there really is no “treatment” or “cure” (YET). 

I wanted to manage and strive for quality of life, keep Mom comfortable, but be mindful that we were not providing things that could extend her life.

When Mom started to refuse to take the anti-anxiety medication the care community was delivering, I realized that it was being delivered with a host of vitamins. Was it important to give my 80-year-old mother a multi-vitamin?

My Mom didn’t really like taking pills, so delivering 4, of which one was really important to minimize her stress became the only one I asked them to deliver. I followed up with the doctor who agreed that the other pills were not really necessary and her medication regimen was updated.

When Ensure was recommended as an addition to her meals, I asked more questions to make sure it wasn’t been forced or delivered as a meal replacement over providing her with food options she would still eat.

Apparently dementia and age can impact your taste and there seemed to be a strong preference for salty and sweet foods. She was never much of a salad or veggie person and it seemed odd to start worrying about nutrition when she often couldn’t remember names or faces. I didn’t want her to be hungry, but I also wanted to let her have some control even through her diagnosis over day-to-day choices.

My toughest challenge was when her hip broke and the doctor insisted we lift the DNR (Do Not Resuscitate) order for her so they could repair her broken joint. At 83 and very frail, there was no way she would have survived the surgery and they agreed to move her into Hospice Care. Over the previous year, she had been in and out of Hospice Care as she continued to weaken. However, with the addition of the broken hip, we now had the option to keep her comfortable with morphine that would eventually end her life.

These were difficult and guilt-inducing decisions, but I always worked to meet what I believed to be my mother’s wishes. Knowing these options may not just better serve the comfort, but also allow you to focus more on enjoying time with your loved one than managing medical matters.

Would the vitamins and Ensure prevented the eventual hip break? I will never really know but after caring for two parents now realize how important it is to let the will of the individual influence their daily choices, even after a diagnosis of dementia.

You will have a lot of options and choices to make over the course of your journey. Just know you will make the best decision you can with the information you have at the time you need to make choices for your loved one. Hospice can be a valuable option during your care journey. Reminded. 

 

Understanding the Best and Worse Case Options

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After caring for two parents with dementia, what I believe is that most doctors lean toward life extending measures and often don’t stop and consider the outcomes beyond the immediate resolution to an issue.

I watched as my Dad recovered from hip surgery and was cognitively a different man. He was in great physical health before the surgery (he broke his hip playing racquetball), but we all noticed a decline in his ability to hold a conversation or discuss the finances afterward. He was eventually diagnosed with Alzheimers but the years leading up to his diagnosis was filled with dozens of visits to primary care physicians, and even a neurologist, who dismissed all of our concerns about the changes in our Dad’s thinking and behavior. There really wasn’t a choice about the surgery to make since he was in good shape and had not been diagnosed cognitive issues, but the drastic change has me wondering about surgery later in life. My Dad was 76 when he had this surgery.

A recent report Major surgeries linked to small decline in mental functioning in older age confirms that a decline has been proven. However, they do believe for patients who are developing a brain disease the outcome would be more pronounced. That was definitely true with my Dad.

When Mom fell at 83 and the orthopedic surgeon demanded I lift Mom’s “Do Not Resuscitate” order so she could perform surgery, I balked. I had to ask for the social worker and an internist so I could convey that there is no way my Mom would be in a better place after surgery. She was living in a Memory Care community, had clearly had another stroke and had no idea who I was any longer, and mending her hip would most likely be too difficult for her to survive. As I was pushing back for them to give me options, they worked on getting my mom approved for surgery. Thankfully, the testing ultimately proved she would most likely never make it through the operation. I was able to follow the wishes she conveyed to me over decades as well as spelled out in her medical directives. Mom was moved into hospice care and died two weeks later.

What frustrated me was that there were no discussions about outcomes, just a swift recommendation to fix what was broken.

Too many families have found they end up with increased medical expenses and loved ones that are living, but don’t have the quality of life they expected after surgery in later life. Some admit that they wish they had know both the good and bad possible outcomes — but that isn’t currently how most medical consults currently work.

A few Emergency Rooms are now adding in a “Geriatric Team” to better serve those individuals coming into their hospitals and have a lot more to consider than just fixing the obvious medical emergency. The most important consideration is the what could happen and the life to be lead after.  Should you be in this situation, please demand you get both the best- and worst-case options. Recommended.

Rules of Engagement for Adult Children Caregivers

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Normal families have sibling conflict … and can only expect that to escalate when it comes to caregiving. I (and my siblings) was incredibly lucky. We had our heated debates, but managed to navigate our journey and actually emerge as more connected adults. I have come to see how incredibly rare our family outcome is. Maybe it was because we were losing both parents to dementia simultaneously, maybe because we actually all lived in different parts of the county … or maybe just because it was a testament to how our parents raised us.

I was the baby of the family and am not typically the one to be the primary adult caregiver. But I was the only one that was local.

When we began to have disagreements over things I thought had simple solutions, I proposed some working rules for us to work together and that we adopted. They were:

  1. Spouses are invited to participate, but only direct descendants vote.
  2. It’s okay to disagree, but not okay to be disagreeable.
  3. Majority rules on any vote unless it impacts any of us financially. If the outcome of the vote impacts us financially, the vote must be unanimous.

We also had a general agreement that we wouldn’t discuss issues outside the family meetings. It made us talk and think through all of the issues, emotions, and complications together.

At the time, we used an online site for free teleconferencing called TalkShoe. The calls helped eliminate misunderstandings and have a better understanding of how we were each approaching and dealing with the loss of our parents.

In an effort to reconnect, we recently are having sibling calls using a video conference option called Zoom.

This is no easy journey. The worse outcome is that you not only lose a parent, but you fracture other family relationships as you are all dealing with the stress, grief, and frustration of being adult family caregivers. May you find a way to make it work for your family. Shared. 

When we can’t find the right words …

Cole&PoppopYesterday was my son’s college graduation. As I drove up, I struggled to shake the feeling of loss that swept over me as I faced another big event without my parents. Since they both battled different forms of dementia, it is a blessing they are no longer on this earth, but how I miss them being able to celebrate another engineer in the family bloodline. My Dad and Cole always ended up in giggles when the two of them got together and he would have reveled in the graduation. 

As I sat at the ceremony listening to the Valedictorian, it became clear that no matter what your age, education, or beliefs, we are all struggling to find the right words to enter into civil discourse. As she and her classmates are preparing to continue their quest to make our world a better place, the things she shared with her peers felt immediately valuable to me as I work with many who have lost the ability to handle the complications of balancing a checkbook, negotiating a contract, or even planning a meal. The added complexity in helping a loved one is that there are the familiar habits and patterns that may put your assistance out of the realm of ‘normal’ and cause discomfort. The best way for me to start a fight with my Mom was to ask if she wanted help with the bills and the checkbook. She didn’t sense any short coming in her abilities so my words felt like a betrayal when I reminded her of the missed water payment or the fact that she signed two contracts for the same home repair with two different vendors.

“Approach with humility and a desire to understand,” suggests Kate Hill. Give ‘space to silence’ and ‘don’t lock the doors’ — two ideas that I think can be applied simply to the role of caregiving.

I know the impatience I felt when I was working, raising two young kids, and also trying to help out my parents. I wanted to just take over and get things done. I needed to allow more time to cross the item off of the task list and include them in the process. So too must we apply this same approach to problems we are facing in our communities, states, and country. 

When our loved ones are already losing so much, the last thing we need to do is to add to the list of losses. I’m excited to see what this generation will do for all of us and appreciate the on words she used to suggest how to be better citizens, friends, colleagues, parents, children, and caregivers. Impressed.

The road is rocky for all the travelers.

I remember the moments of joy when things felt normal. Whether it was taking a walk on a nature trail or having a conversation in which my mom shined through.

I also remember the moments when the loss was so noticeable I had to leave the room to avoid puddling into tears.

I was the daughter. I can only imagine the intensity of loss with a spouse. Finding a way to manage the journey for everyone is the most difficult challenge for both those diagnosed and those acting as care partners.

It’s easy to get distracted by trying to reach for a destination, but as I learned, I needed to be in the moment, not charting out what’s next. That can be difficult in our world that has evolved to an “always on” mentality. I still have to remind myself of this with my friends and family.

This is just a note to be kind to yourself. I made many mistakes, and most likely, you will too. However, there are many individuals that have no one by their side helping them. It’s not an easy road and your loved one is lucky to have you on this journey with them. Be kind to yourself. Reminded.

Be Kind to Yourself.