Assume Appreciation

For anyone who has stepped up to help a loved one, you know how hard it can be.

Your loved one is fighting for independence, purpose, and typically has no recognition of the help they need. It took me a year to really figure out how to better navigate the support my parents needed but didn’t recognize.

I learned that I had to be the one to adapt. For someone with a cognitive issue that they most likely don’t fully recognize, they are going to be unable to adapt.

Years ago when I was still working in Corporate America, we had a consultant come in to help the company function better. One of the things we learned was to always give your team mates the assumption they are working to help you. As you can imagine, we had some internal struggles and this idea did help us start to have dialogue around where we were trying to go and how to get there now assuming we were all going to the same place. It was a game-changer, at least for me, and I still carry on this philosophy in all I do.

One of the things I did learn on my caregiving journey was to sit with my parents, and mostly my Mom, and do things in tandem. While early on the first thought was to take away the checkbook, I changed to a system where I would come and sit with my Mom to help her with the bills. Eventually, she just handed over the checkbook and asked me to take care of the bills for her.

That first year was REALLY difficult and I don’t think I ever cried so much in my life. It was frustrating, heartbreaking, and thankless.

After I changed to approach my role differently, things went a lot smoother.

YES. The time I needed to spend with my parents to help them DOUBLED. It takes way less time to do things solo, but the reality was that my parents wanted to participate.

One day, I walked into my parents apartment, and found the note I have included in this post. “Dear Kay, So thoughtful and loving for you to take us on — as if you don’t already have enough to do.” My Mom was not a gushy lady. Reading this still brings tears of joy and grief to my eyes.

There were some things I could have done differently but I did the best I could. I operated on the assumption that it was an honor and duty to help my parents. In the end, I was surprised to find that my Mom recognized the love behind my support for them.

Even if they are unable to tell you, assume there is appreciation for the support you are offering.

I meet many older adults today who hire me and my agency to help them because they don’t have family to help. The stories I hear are often heart-breaking and they feel very alone.

I wanted to remind you that the people you are helping are lucky to have you. What you do might not always be the perfect option, but it’s okay because you are working on finding the best path forward together. Appreciated.

My Mom repeats herself. Is that a symptom of dementia?

stylish women leaning on pillars on station
Photo by Daria Sannikova on Pexels.com

We have all done this at some point in our lives — and we either realize it mid-sentence or are told by our conversation partner. If this is a common occurrence and the person repeating themselves doesn’t recall having the conversation before, then it is time to bring it up with the primary care doctor. 

Any change in behavior by a loved one should start with a visit to their doctor. There are a variety of things that could cause changes (medication, lack of sleep,  a urinary tract infection) and not necessarily dementia. However, I do advise you start with the primary care doctor and discuss the changes. The more specific you can be the better so consider starting a journal to help you recall how often this is happening as well as help define exactly what is occurring.  My mom dismissed my concerns when I went to the doctor with her, and she focused on my Dad’s forgetfulness. I didn’t have specific details and facts to frame my concerns. 

Time and time again I know of many families that recognize something is off, but it is not something a primary care doctor can easily identify. Often, dementia won’t be diagnosed until later in the disease progression and early treatment could help slow the advance of the disease. So be persistent. Ask for a referral for a neuropsychological examination. Even after my Dad was diagnosed, he would score 28 on the mini-mental exam out of 30 — push for more nuanced testing.  

Looking back, I now recognize so many issues and signs that alerted us to mom’s dementia, but it was a long difficult road to even get to a diagnosis for a variety of reasons. The biggest one being my mom and dad fought to keep their independence fiercely. I arrived when I was given the opportunity to help them. I just hope that I won’t repeat history if I end up with the same condition. Prayed.

Navigating the Early Days of Dementia – Part II

A reader (thank you Debbie) reminded me how important it is to make a connection with the individuals surrounding your loved one. Thankfully, these days are behind me. However, the issues surrounding helping my parents reshaped my life plans. Nearly a decade ago, I launched my own business to help other families deal with financial confusion and disorganization and have learned who the key players are that you should have on your support team.

The key advisors in addition to the doctor and banker who can be invaluable when caring for a loved one.

Debbie cared for her mom for ten years. Her mom would add her to the bank account, and within days revoked that permission. Most people don’t recognize dementia or notice memory issues when they don’t know you, so the bankers would follow the wishes of their client. Debbie kept a diary of her mom’s behavior and was able to provide that information to her mom’s long term primary care physician along with a letter of concern. This at least allowed the doctor to diagnose and recommend medications.

Debbie spent time meeting with the bank manager, social services, and lawyer so they were all notified of the situation. Sometimes it is all you can do. Similar to my family situation, guardian and conservatorship were recommended but for anyone who has witnessed this, it is often not something you want to pursue. You basically would be declaring your loved one incompetent in a court of law and in a public record. It can be very costly and if the individual hires a lawyer to fight it, the costs in our area are typically in the tens of thousands. There are many cases in which this is a necessity, but often it gets really messy when families end up in court.

When I was the caregiver, the financial advisor for my parent’s disregarded our calls. Most modern financial advisors know that incorporating the adult children into the fold early is a smart move. Most adult children will immediately move the money the moment they can when the advisor presented as more of a roadblock that a resource. I know we did when it was time to help organize my parent’s finances.

There are many others I recommend to help you along the way as illustrated in the diagram. If your loved one won’t let you help, spend your time building a bridge to other resources that may provide the support needed. For a few more posts related to this topic, follow the links below. Shared.

A Quick Way to Ensure You are Well-Represented What you need to be an effective advocate. Includes a free download.

Strokes, Free Will, and Frustration For All Some basic things you can do if you someone continues to drive when maybe they shouldn’t be due to medical concern.

Dreamwork Makes the Care Team Work I discuss the individuals that are key for keeping someone safe in their home.

Navigating the Early Days of Dementia

Imagine if your friends and family started to treat you like you needed help with your day-to-day life. All of sudden, your spouse is taking over and trying to get you to visit the doctor, or your brother is suggesting that you stop driving. You have been living your life and all of sudden it feels like people you love are picking apart your lifestyle and over-stepping their boundaries into your affairs.

man busy using his laptop
Photo by Marcus Aurelius on Pexels.com

You would be angry, appalled, frustrated and probably kick back.

Consider that if you are the family that is stepping in to help a loved one who doesn’t recognize that their behavior or thinking has changed. I frequently write about Anosognosia, which is the inability of someone who has a condition to recognize its existence. More complicating is if no doctor has even been seen to help diagnose the issue — particularly early on. The family and close network of friends are always the first to notice the changes.

If you do have a loved one that is having trouble managing their day-to-day affairs, assume they can’t recognize it. I always encourage families to get to the Primary Care Doctor and get a referral to a neurologist. There can be a host of reversible issues causing memory loss, and the earlier you see a doctor the better. The next steps are usually and MRI and a neuro-psychological evaluation.

However, you are already noticing a change in your loved one and are concerned. This is the toughest time to navigate. I feel like it’s human nature for the person to almost over manage their life and if there are truly memory issues then you often see a host of double paid bills or even what seem to be knee-jerk moves to manage their lives outwardly.

One client who was complaining of a tooth issue, scheduled and had her tooth removed and major bone graphing done. She was supposed to pre-medicate with antibiotics, which we know didn’t happen. Then, after the procedure, was given a prescription for a week of antibiotics and a daily oral rinse. Thankfully, a timely visit uncovered the hand-written prescription that could be fulfilled and now we are working to help ensure she completes the course of antibiotics.

I have been the one who stepped in. My parents would agree to something, a small change, and then undo any progress made within days. At first I was angry. Then I recognized that my parent’s were not doing it to minimize me or my help, but were doing what they believed was best for them. In most cases, I don’t believe they remembered the change made or why.

I see families and loved ones who feel thwarted and are upset. I get it. However, I just ask that you recognize that they are working very hard to manage on their own as they have for decades. I can now only imagine how frustrated they are to feel so challenged to do things they have always done for themselves and how it be hard to do. Considered.

The Link between Dementia and Mismanaged Finances

Eureka! What I recognized anecdotally for years is now published research that concluded financial symptoms of cognitive issues are surfacing up to six years before a formal clinical diagnosis.

SIX YEARS.

You are noticing changes in your own thinking, or you are seeing changes in a loved one that is concerning, but the primary care doctor just reassures you that you are “fine.” I witnessed this all play out with my parents for years. By the time we finally had a formal diagnosis, both of my parents were diagnosed with MODERATE forms of dementia. Dad they believed to be Alzheimer’s and my mother had primarily Vascular Dementia.

If you are having more difficulty with bill pay and managing the checkbook balance, it is time to share that with a loved one and your primary care physician.

Many financial mistakes were made for many years preceding this, including the decision to stop paying for long-term care insurance. Most of my Dad’s retirement accounts were unattended and forgotten.

For more insight into this visit this Washington Post Story.

After living the journey with my parents, and now supporting individuals and families as a daily money manager, I have seen and cleaned up many of these issues. It is rewarding, but sometimes takes my breath away, when I calculate how much money was wasted or lost over the years that could have been used to help pay for their care.

The research primary looked at payment delinquency. If someone is missing bill payments, when they were prompt payers before, this change could be a sign of a cognitive issue.

If you are experiencing this, or are having trouble making your checkbook balance when that has been a lifelong habit, it’s time to share this with a loved one as well as your primary care doctor.

The earlier you identify an issue, the more options and control you can have over it’s future course. Believed.

Aging in Place and Social Distancing

I am thankful that right now I don’t have to balance my children’s needs, my client’s needs, and my aging parents. My parents have both taken a celestial departure from this earth, but in just imaging them being around now … I feel my chest tighten.

I am working with several families who have a loved one that someone from my company works with in the metro-DC area. Our goal is to support our clients by assisting, managing in tandem, or by just handling the day-to-day financial matters (bills, home maintenance, long term care and insurance claims). After caring for two parents who had different types of dementia, I am very attuned to how much it means for them to live their life and manage their affairs.

So here we sit with several clients who still live alone in their homes. Some have stopped all external visits from health care managers, cleaning services, and personal care assistants while others doubled down and now have 24/7 help and care in their home.

There is no right or wrong. There is just right for each individual.

The initial two week social distancing came and went. Now we are looking at near isolation for some or escalating care expenses for possibly three months. I am curious to see how we all emerge and adapt after this experience.

What I have noticed in working with adults with cognitive disabilities is that the more they interact with others, the higher they function when we sit with them to do basic bill pay tasks. However, most of those isolated at home are now getting regular calls from the family, and are having to manage in their home all on their own. In calling many of them regularly, they are doing fine and have managed to adapt to our virtual support.

Will any of us win this experiment? Will those on their own emerge stronger after showing us all how they can manage? For those that could not manage on their own, will they do better than those in communities when it comes to exposure to Covid-19?

All I know is that we are all doing the best we can with the information we have at this time, and within the resources we have at our disposal. We may just see how well our American ingenuity shines at a time when modern medicine can’t protect us.

I’m looking forward to being able to see this one in my rear-view mirror. Wondered.

Help with Healthcare is a Great Place to Start

Staying at home has given me a lot of time for Spring Cleaning. I finally went into the last box of my parent’s papers this weekend and found this note from my Mom.

When my parent’s were still coming over for dinners on Friday and we recognized something was amiss, but were unsure what, my Mom asked if I would join her for the annual physical. She had mentioned that they were having trouble keeping up with the medicines and she was worried about my Dad … would I join? This was the note she gave me summarizing all of their medications. I attended and sat quietly and watched as concerns were raised and then mostly dismissed.

Within a year, my mom had a minor stroke and she readily accepted my rides to the doctor. However, this was the beginning of the trouble in some regards. My Mom was in disbelief that she had a stroke, and started to challenge that I was making it up. She began to debate me on the way to the appointments when I would simply report that we were going to see the neurologist. When she asked “why” and I reported it was because of her stroke, she would guffaw in disbelief. At the appointment, she argued with the neurologist. Good times. ; <

I wish I had know about Anosognosia. From the Stroke Connection: “Anosognosia (pronounced an-a-sog-NO-sia) refers to a person’s lack of awareness of their own motor, visual or cognitive deficits. It can happen in people with stroke, traumatic brain injury, multiple sclerosis, Parkinson’s disease, Huntington’s disease and Alzheimer’s disease.”

Looking back, I realize that even just stating that she has a stroke created an emotional response in my Mom that left her feeling like I did not have her best interests. She became very protective of her information and in return, insisted that she could manage her own affairs.

I learned over time that my parent’s responded with emotion to information or events. Any information citing they were unable to manage their own health and welfare pushed them into a defensive mode. If I arrived for a visit stressed, they would absorb my anxiety and we would have a terrible visit.

During this time my siblings and I watched as:

  • Their licenses were revoked and they continued to drive their cars;
  • They failed to pay their bills regularly and ran into issues with water and electricity;
  • Ultimately, their retirement community threatened to kick them out if they would not move from independent into the assisted living community.

I was ready in the wings when it was time to act, but it was more than two years before I was allowed back in to help. When I did re-enter I had learned a lot about how best to support and respond to my parent’s needs.

The current state of affairs may be a bridge that opens to invite you in to help. While many families are isolating themselves from their loved ones to protect them, others are including them in the shelter in place orders.

May you and your family find peace, joy, and common ground on which to move forward. Wished.

Gaining Mom’s trust.

Many of us have been seeing a parent struggle with their memory and ability to manage their own affairs long before there is ever a diagnosis.

It took time for my Mom to adapt to having me pay the bills and help her. She felt that she was managing just fine. My Dad recognized she was having trouble and asked me to help. When I started I had trouble learning how to assist without offending my Mom. My Mom never recognized that the stroke she had impacted her memory or her ability to manage. She would tell me her “brain is bad today” but that wasn’t impacting her ability to manage her life (in her own mind). When I reminded her that she did have a stroke, she would accuse me of making it up.

I slowly worked to gain her trust by doing things in tandem that she asked for help on. I found the less I pushed, the more opportunity to help I was given.

When it came to the mail and the bills, I would take the piles of mail that were lying around and triage issues as I uncovered them. Thankfully, my parents added me to the bank account so I could reverse engineer many of their household finances. I visited with a large purse that allowed me to easily drop in piles that were dispersed around their home.

One day I walked in to visit, and my Mom had created a mail pile for me that included a bill and a check. She even put a label on the pile for me. Earned.

What you Should Know if Dementia is in your DNA

For those of us caring (or have cared) for parents with dementia, you should know there are a variety of factors that we can control that will reduce our risk.

The first is good news for those of us that worry that genetic factors have sealed our fate.

Association of Lifestyle and Genetic Risk With Incidence of Dementia (JAMA, July 2019) The study sought to determine if a healthy lifestyle was associated with lower risk of dementia, regardless of genetic risk. They found that a favorable lifestyle was associated with a lower risk of dementia among participants with high genetic risk. There is considerable evidence that individuals who avoid smoking tobacco, are physically active, drink alcohol in moderation, and have a healthy diet have a lower dementia risk.

The next study reports that higher levels of daily physical activity may protect against the cognitive decline and neurodegeneration (brain tissue loss) from Alzheimer’s disease (AD) that alters the lives of many older people. This was from researchers at Massachusetts General Hospital (MGH). Exercise offers protection against Alzheimer’s (JAMA Neurology, July 2019)

I noticed what a difference exercise made for my Dad who was diagnosed with Alzheimer’s. I worked to encourage him to get exercise, but it got to the point that the only way it worked was when I would challenge him to play Racquetball with me. He had a group of friends that he regularly met in the mornings, but after he fell on the Racquetball court and broke his hip, he was just unable to return more because he couldn’t manage to plan ahead and would not allow me to help. When I did get him moving he was just more communicative. I do need to add that he recovered from his hip surgery and was still able to beat me. While I could run, I just couldn’t outsmart his crafty shots.

I have also seen this with the older adults I work with. The more they are engaged with others and active, the better they seem to manage when it comes to working on daily finances and household chores. I have many that really want to stay in their homes but also don’t realize how isolating that can be.

The middle stage is hard to navigate as our loved ones think they are managing but are unable to recognize what they are not able to do or follow up on. If there is anyway to incorporate friends who can help them return to an activity they shared it will give them both a social and a physical boost?

The research has proven that we aren’t predestined to the fate of our parents if we have a favorable lifestyle. The good news for our loved ones is that exercise will help them even after a diagnosis. Let me know if you have had some success getting your loved ones that have been diagnosed moving again. Encouraged.

Use It or Lose It Applies to your Memory Too

I have three clients all with Memory issues that have shown a noticeable uptick in their engagement and activity. Unfortunately, it isn’t all of them so I started to see if there was any patterns that applied to all three.

In the past one to two months, all three of them have had more social engagement. They are all widowed, and live alone. None of them had previously had much social interaction due to giving up car keys, moving into a new community, or even just because for the last year they were giving care to a loved one.

When you visit with them, initially you may not even notice they have any short-term memory issues. However, if you try to have a longer or deeper conversation with them, you quickly recognize they have some memory issues. Due to changing circumstances, all three of them have had a lot more social interaction and I think that has helped them in a variety of ways.

I have noticed it in their activity, spending, and in my direct conversations with them.

Memory loss is not a normal consequence of aging. Our brains still produce new brain cells. However, once we hit 50, there is a slowing down of brain processing which we usually equate to memory loss. Eventually, you should be able to recall information, but it just takes longer.

However, we must remind ourselves that just like muscle-strength, we need to continue using our memory skills and engage in activities that stimulate our brains. It’s why I am afraid of the traditional concept of retirement and am often day-dreaming about how best to age, enjoy life, and stay engaged in meaningful ways that will challenge my brain.

After seeing this anecdotal result, I believe that every person needs to have some form of meaningful social engagement several times a week. For many older adults who want to age in place, managing this if they live alone can be a bigger challenge. In general our friend circle may be smaller and it might be harder to visit if we are no longer driving.

The answer on how to get more social engagement will vary for everyone but most communities have senior and community centers that offer ongoing classes and exercise programs for opportunities to make new friends. However, step one is to help us all recognize that your brain is a use it or lose it muscle we all need to work on continuing to stretch. Witnessed.

If you have a loved one in this situation, can you:
– Find local classes where they might meet a new friend (senior centers, community centers, and community colleges are easy places to start)
– Connect them with a local “village” that works to connect neighbors and offer both social engagement and help around the house
– Encourage them to look at moving to an adult community be it 55+, a condominium or apartment, as well as a Life Care Community
– Look at AARP that often offers a variety of social events in your community — if you are a member you will get mail or you can also download their app that features local events that are usually free
– Have friendly visitors come to the home to take them out or have a lively discussion at home about topics they love.

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 treatmentHospice 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.