Tag: caring for parents with dementia

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.

Dementia and it’s troublesome sidekick Anxiety

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The speed at which my Mom could bring me into her anxiety was one of the most alarming shifts in our familiar dynamic. Growing up, my mom was the calm, low-key fixer. In the military life in which I was raised with a dad that was often gone, mom ran the household and raised four kids. She was as adept with a hammer and nails as she was with a spatula and pie pan. So when I started to get panicked calls from her, I usually found myself jumping in a car and driving over to visit. I figured it was now my turn to be the fixer.

There were a lot of personality changes over the years, but the anxiety was one of the issues that troubled me most. I learned when she was anxious how to not join her where she was and redirect to a calmer option. I learned to not disagree or debate what she believed, but also not join in the alarm. In the beginning, I would just excuse myself for a few minutes so I could reset my demeanor. Later, I would suggest something we could do together that would change the setting and take her focus to something else.

Puzzles were a regular feature of mom’s room in Assisted Living. The simple act of setting it up, finding a piece or putting it away always brought calm. When it was nice, we would go for a walk in her community, and some days we just got in the car and would complete a simple errand.

The “therapeutic fibs” are often recommended for those that can’t break the cycle of anxiety they are in. I really struggled with this idea initially but found that the truth teller in me was not helpful in many situations. The most difficult were my mom’s calls about dad being in the hospital and needing a ride to visit him after he died. Neither of us needed to relieve his death over and over and I found the suggestion of a visit to dad calmed her down and let her focus on what to do before I would be coming over.

As a last resort they may prescribe medicine that can help. There were several times in the early days when the doctor encouraged us to use the Ativan she prescribed. When the Life Care Community my parents lived in forced their migration from Independent Living into Assisted Living, I dissolved the pill in a glass of Coke. I started out offering the medication to her, but she was suspicious and would refuse any medication. It’s kind of humorous to me now to tell you that she was so anxious, she wouldn’t take the pill that would help her anxiety, but that was our reality.

Dementia is hard on more than just the individual diagnosed with it, and because our loved ones are usually unable to adapt to the changes happening in their brain, it’s up to us to adapt to help them. Encouraged. 

Falls are Game Changers for Older Adults

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I know you have heard or seen a lot about the risk of a fall. It seems like the smallest of worries when you are dealing with concerns over personal and financial safety.  However, it looms as one thing that changes EVERYTHING for many of the clients with which I work. It was also the pivotal event that preceded my mom’s death.

For my mom, ending up the Emergency Room after a fall in her Memory Care community resulted in another small stroke (or maybe two). While the doctor suggested surgery, I struggled with the idea that if she emerged from surgery, she would actually be cognitively worse and have to manage through the pain and recovery. She didn’t recognize me at the hospital and she was no longer swallowing her food. While the medical solution was surgery, I was advised to tell them she would prefer to “let nature take its course.” The initial tests confirmed that she was too frail to survive the surgery and she moved into hospice care. Unfortunately, my experience is more common than most realize.

According to The Washington Post, “researchers found that frail older women who broke hips were unlikely to fully recover their prefracture qualify of life, even after as many as 10 years.” Another study from the Journal of General Internal Medicine found that only 31 percent of the cohort they followed after breaking a hip recovered to their prefracture ability. They did find that many of the adults were already frail and had trouble walking, dressing, or bathing before the fall.

There are several things that can be done to minimize the fall risk and include:

  • Get exercise. A variety of types of exercise can help from strength training to aerobic activities. Getting someone who has never exercised to exercise can be a fools errand. My mother never exercised but was very active and loved to walk, so we worked to get regular walks. When she needed to move into a Memory Care community, we found one that allowed her to freely (and safely) walk the grounds.
  • Take Fall Prevention Measures. Remove trip hazards like area rugs and keep the floor tidy. This is a ‘no brainer’ that can be harder to manage if your loved one is resistant to give up the rugs they have always had in the hallway, or if they don’t value a tidy room.
  • Eat Well. From addressing any vitamin deficiencies like osteoporosis or neuropathy to maintaining a healthy weight — all are contributing factors to better well-being and fitness.
  • Stop Smoking. Apparently they have found that smoking delayed the heal of a fracture!

I figured being over-prepared is the best defense. The smallest of falls can be the one event that blows up all of your well-made plans. Maybe it’s time to consider how to incorporate ways to combat fall risks into your plans. 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. 

Shining through a dementia diagnosis

A recent photography contest awarded three winners for their self-portraits. All of the contestants have dementia or Alzheimer’s and was organized by the Bob and Diane Fund.

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Elia Luciani’s self-portrait from a mirror on a dresser covered with family photographs. (Elia Luciani). Please make sure to check out the photo behind Elia in her self portrait.

As I poured over the image, I immediately broke into a laugh when I saw the portrait she has hanging on the wall behind her. Not only is family an obvious piece of the photographers sense of self, but I have to assume that is her with her hands above her head making a silly face in a similarly set-up self portrait by someone else … maybe even a husband.

I savored the moments when my gracious mother shined through her dementia. There were days when she immediately knew me and would talk about the family, or reflect on what my dad would have said if he were still alive about something fantastic in my life that I shared with her. She wasn’t able to ever perceive her cognitive loss, but just knew that “her brain was bad.” I missed her terribly when she was alive, and that loss carries on with me now that she is gone.

I hope you will take the time to view the winners and honorable mentions. It’s inspiring to see how many are living with, adapting and shining brightly after their diagnosis of dementia or Alzheimer’s. Awed.

Delirium and surgery common after 65

I am guessing that more doctors liked when patients were not armed with so much information. However, between whole sections of our daily newspaper that cover health issues and the internet, we can probably be everything from better patients to difficult to help. As an individual with the need to constantly learn, I love pouring over the Health & Science section of the The Washington Post. Today, it includes a story from Muriel Dobbin who talks about the delirium she experienced after surgery. Apparently, up to 46 percent of all surgery patients are struck annually by “postoperative delirium” that is marked by confused thinking, disruption of mental faculties, and anxiety. In older patients, the figure hits 70 to 87 percent who end up in intensive care. It can last days, weeks, months, and in some cases years.

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Do your loved know how to access your digital accounts if you were temporarily unable to manage for yourself?

In general, we are bad at making up a plan B for ourselves should we be incapacitated if only for a few days or weeks. It’s why more than $60 billion is sitting with state and Federal treasurers — no one documented their money or assets and how to get to it and eventually it ends up in the unclaimed money pool.

While I walked into this recognition because of my time as a caregiver for my parents, it made me realize how fragile my own household information was and how important it was to create a roadmap of our accounts, document all my user names and passcodes, as well as write down the answers to all of my security questions.

Once a week I hear from an adult child that is frustrated that their parent doesn’t have this information together and they are overwhelmed. My first recommendation is to do it for yourself … and maybe do it with your loved one so you are both organized. This is not just something you need to do when you hit 40. The complications of our digital word make this something every adult should do.

Most often, I end up walking into an older adults home and sorting through piles of mail to try to quickly build a financial profile. I’m typically working with a spouse who has no idea how to even begin on top of the grief and worry they are feeling as a loved one is in a hospital or rehab facility. For many baby boomers, I am finding that they manage their own accounts and often divide and conquer and don’t have a shared vision of their household assets.

I hope this will give you the incentive to now do it for yourself. You can get a free checklist of what to organize here. It won’t require more than 2 inch ringer binder to get it together. If you would rather be walked through the collection process, you can order the workbook on Amazon for $17.16. Recommended.

To see if you have money in the missing money pool, visit www.MissingMoney.com

Lying to the ones we love.

Two things that should be a part of every caregiver bootcamp:

  1. An introduction to the medical reality that our loved ones may not be able to recognize that they are having cognitive issues. It’s called Anosognosia and if someone in your life has had a stroke, or been diagnosed with dementia it is something you should understand. The individual is not purposefully dismissing you as I thought of my mother. I assumed she knew something was wrong but decided to ignore it and dismiss my concerns. However, the reality is that most likely she really had no idea that she was failing cognitively. One report cited that a “categorical diagnosis of anosognosia was made in 42% of patients with mild AD” (Alzheimer’s Dementia). Another report cited that over 80% of those diagnosed with varied dementia had anosognosia.
  2. There are times when honesty is painful for everyone when a loved one has dementia. When my mom wondered when Dad was coming home from the hospital, I initially walked her through his death and how we were all surrounding him. I still puddle at the memory of these conversations and it’s been more than five years since I had them with Mom. She relived the pain as did I. Why didn’t I just say that he would be home in a few days? I had a fixed belief that honesty was the best policy … but there were many times when it didn’t serve my Mom.

I wish I had learned and understood this much earlier in my journey as a family caregiver. It will take some time to understand and adapt. However, being armed with this information can help you be a better care partner.

When I finally learned this information and how to apply it, I promised myself that I would tell the truth once and after the initial conversation would find a kinder way to respond to Mom’s questions or demands.

Once I learned how to change, life for both of us got better. Shared.

Named a Best Alzheimer’s Blog 2019 by Healthline

It’s nice to get recognition. For a fourth year, Healthline has selected Dealing With Dementia one of the Best Alzheimer’s Blogs. I started this blog for many reasons. One was to provide my siblings with insight into the issues I was facing as the only adult child living near my parents. But then it became a way for me to digest what was happening and dissect how I was dealing with it. I have lots of “mea culpa” blog posts. Turns out I finally figured out I learn by doing and I made a lot of mistakes.

Since I’m not one to miss a golden opportunity, I will use this to remind the readers that Alzheimer’s is just one of the five primary types of dementia’s — as shown in the image. It is the most common based on the number of diagnosed cases, but I also know that many individuals are never diagnosed.

Its been more than two years since I cared for a family member with dementia. Today I work with a variety of individuals and families who have been diagnosed and continue to learn how to be a better care partner.

For a full list of the winners, You can visit Healthline. I am honored to be recognized again for this honor. Encouraged.

Knowing the type of Dementia Helps Everyone

I didn’t handle the diagnosis of my parents well. I thought that hearing a doctor tell them they had dementia would suddenly make helping them easier for me. I finally realized that it was equally devastating to my Mom every time she was told.

For a large majority of individuals with vascular dementia – the type that comes after a stroke – they are unable to recognize their loss. My Mom had no physical changes, and for the first few months thought I was making up the fact that she had a stroke. The medical term is Anosognosia and I wish I knew and understood this when my Mom was diagnosed. She was medically unable to perceive that she had difficulty with her thinking and memory.

In the years since I lived through caring for two parents with dementia, I have found many individuals that don’t understand why a diagnosis mattered at all.

A recent story on NPR Is It Alzheimer’s Or Another Dementia? The Right Answer Matters reinforces the need to get a diagnosis. Apparently, most people default to the belief it is Alzheimer’s, and having some insight can also help the care partners manage better.

I have had a long-standing discomfort with the share of voice Alzheimer’s has taken. First and foremost is because most people don’t even know it is the most common form of dementia. I didn’t realize it until my Mom was diagnosed with Vascular Dementia, while my Dad was diagnosed with Alzheimer’s.

What I have learned is that the primary types of dementia all come with varied behaviors, risks, possible treatments and care plans. One form of dementia comes with symptoms that present more as a personality change than symptoms of dementia. In general, changes in behavior, mood, and memory should all be discussed with your primary care physician. Knowing more can help everyone and I hope you will help learn more should you be concerned about your own health changes or those in a loved one. Encouraged.

Returning Home Never Felt This Sad Before

My brothers arrived the day before I was leaving to visit my husband’s family. I have not left town without a sibling coming in to visit my parents for the past year. When we learned my dad’s driver’s license was revoked and he continued to drive — and that my mom was encouraging this behavior — we knew we had to act.

My parents have clearly lost the ability to make good decisions and are working together to glide further and further into the danger zone.

One brother sent notes so I could share the chain of events for others who may have to face a similar situation. I know the notes don’t convey the half of it. Any engagement with your parent suffering from dementia takes a huge toll on your well-being. You struggle to communicate and get frustrated when you can’t find the comfortable rhythm that once existed. Sometimes, it will take me days to realize the dampness an exchange with my parents has left on me.

I have never felt this sad about returning home. I need to go home so I can find the silver lining in this journey — I know it’s there.

I fly home with a general sense of malaise. It’s only going to get harder from here. Dreaded.

Love More and Expect Less.

I was a sandwich generation caregiver. I was raising two children and caring for two parents with undiagnosed cognitive issues. It was incredibly difficult. I turned to blogging to help keep my siblings in touch with what was going on and found it became my own public therapy. I was pleased to learn how many other adult family caregivers found hope, healing, camaraderie, and a few laughs in my posts. I originally wrote this in 2012 and am resharing one of the many life lessons I learned on my journey. 

It is hard to deal with any loved one when they change. Over the past two years, I’ve gone from passive to confrontational to detached. And repeated this cycle a few times.

When I started to view my parents through the filter of “head injury,” my visits with my parents changed, in a positive way. They have no control over the changes to their cognition and I have to be patient.

Today, their united front reporting that nothing is wrong is unraveling. The number of late bill payments, denial of products purchased with their credit card and lost calendars and checkbooks are increasing.

Meanwhile, my siblings and I collaborate and support each other as we all deal with my parents in different ways and on different timetables.

On one recent post, Kate Swaffer who is dealing with her own dementia sent me a note encouraging me to “Love More and Expect Less.”  I’m still refining my own coping mechanisms and this was timely and sage advice. Appeased.