Managing Medication & Pill Aversion

There seem to be two kinds of people in this world. One that uses medication and appreciates the benefits, and the other that has a general aversion to taking medication.

I fall in the second category and was happy when the one prescribed medication I was taking (a baby aspirin/day) fell out of favor. Well, I suppose there was the science to it, but when my doctor said to discontinue taking it, I was happy to comply.

I see many people struggle with medications, including those with no cognitive issues. I think it’s too easy to miss a dose and think pill caddies are helpful solutions.

A reader asked if there were any simple books for medication management for someone diagnosed with Alzheimer’s. While I’m not trained in health management, from the brain health training I have done, I do know that starting a new habit is difficult for someone diagnosed with any form of cognitive issue, include all dementias.

There are two simple options to help manage medication as well as see if and when someone has missed a dose. The first is the pill caddy and the second is bubble packs. For anyone with more complicated medication scheduling or a lot of pills, the doses are packed with dates and times and come on a roll or in a blister pack.

I always consider options that give an individual more control over their life. I think those two options are helpful in managing medication and provide simple cues on when to take and if a dose was missed.

For those that are averse to medication, but diagnosed with something that medication can prevent or abate, I hope family and loved ones will speak up and help the individual understand the choices they are making and the potential risk to their health. One of the entitlements of being American is that we are given the opportunity to make really bad choices for ourselves. However, when it comes to our health, sometimes our spouses, siblings, and friends need to recognize that someone diagnosed with a cognitive issue might be unable to make a reasonable choice. The act of not taking that medication might result in a need for a higher level of care or other health complication that requires medical intervention or nursing care.

I hope if you have someone in your life in this second category, you will at least share your concern and give them the opportunity to explain their choice. Once diagnosed with any form of dementia, I see many deal with loss after loss. They have lost friends who fell away, the ability to perform at a job they loved, and even just manage the simple act of cooking a meal. Is the refusal to take the medication one place that gives them a sense of control? 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.

Will the bank accept your Power of Attorney?

As the adult family caregiver named as power of attorney, I had an incredibly difficult time getting my Mom’s banks to recognize her power of attorney so I could officially support her. It was less than 2 years old, I provided the original, but since my Mom was alive, they wanted her to come with me to the bank and to sign their power of attorney documentation.

My Mom was so unsteady on her feet she needed a wheel chair. It was difficult and uncomfortable for her to go out. She never wanted to be in a wheel chair and half our journey’s out were battles over getting her to sit down. She was also incredibly frail and the task of just getting into the car would wear her out.

Wasn’t that the point of the Power of Attorney (POA)? I was very frustrated when the banks just failed to recognize my POA. In Virginia I could have pursued a legal suit … but I was already busy enough as my Mom’s family caregiver.

I am not alone as The New York Times story “Finding Out Your Power of Attorney is Worthless” confirms. Sadly, it is not just an issue of the Power of Attorney, but family members are still reporting difficulty getting banks to release funds after death. Here is a recent NBC News story about how difficult it was for Maggie Mulqueen when working with Citibank.

For years, I just used the online banking access to manage my parent’s finances. When I ran into issues, I would either have my Mom sign checks to move the money or just shut down the accounts. When USAA wouldn’t recognize the POA, I didn’t pay to renew my parent’s insurance and moved the account to a new insurance provider. There are some ways to end-around the roadblocks, but it seems ridiculous to have to out- maneuver the bank.

This past week, I walked into two banks to establish myself as Power of Attorney for a client. I need to get her past banking history since no taxes were filed since 2017, and need to be able to sign checks on the days when she is too weak to help. Remarkably, both banks (SunTrust and Wells Fargo) were extremely accommodating. I even had a note from the doctor stating she was unable to manage her own affairs, but did not have to provide it.

I learned two things:

  • You can’t have an active credit freeze. As Power of Attorney, they will create a new bank profile (requires a credit check) for you that is attached to the individuals bank account(s).
  • They view adult children differently than professionals that act as Powers of Attorney.

My logical brain understands this, but my journey as the adult child who was trying to help my parents DETESTS this varied treatment.

Maybe things are changing? Adult family caregivers … what are you finding? Curious.

THANKS to Ashley — Good food for thought and was a tactic I used when I was caring for my parents. Her lawyer suggested she not disclose the information to the bank. Thankfully, her parents added her to their bank account. After I hit a few roadblocks, I just set up online access to most of my parents accounts and did as much as I could digitally and in the spirit of their Power of Attorney. When I hit roadblocks and went to the bank with my POA was when I learned how difficult it was to get them to honor it.

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 to do if my siblings won’t help?

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Do what you can to support yourself.

A reader made a fair point when I posted I’m Overwhelmed and my Siblings Are Not Helping (Thank you Monique).

My siblings helped … eventually. I felt very alone the first few years when they didn’t see the issues I was seeing regularly because I was the only one that lived near my parents. I start from the premise that if you try, you may find that your siblings may join you. So first, I hope you will give them the chance to step up by over-communicating and for asking for specific help.

I had given up before my siblings stepped in and bonked me on the head to reengage.

Should your siblings fail you, do the best you can and move on. We can only control what we do, and the job you have is difficult enough. If you are in this place, my suggestions are to:

  1. Find a local caregiver support group. Go online and search and you will be amazed to find support groups for children, spouses, and even by diagnosis.
    • Try the Alzheimer’s Association, they usually offer all types of support groups and you search by zip code.
    • Contact your county Area Agency on Aging. They should know of some local resources.
    • Contact the local retirement communities, assisted living, and memory care communities — they usually host the support groups and know what is offered locally. Usually someone in the sales department can help you.
  2. See if there is a local village that can help your loved ones and provide recommendations for local vetted resources.
  3. Contact an Aging Life Care Manager.  Nurses and social workers by training, these individuals can help navigate health issues and find quick solutions to care needs. While they do have an hourly rate from $150 to $200, they might be able to find a solution to something that might take you days and weeks to navigate. You don’t know what you don’t know and it’s nice to have an expert on aging in your back pocket.
  4. Meet with a Daily Money Manager. They typically specialize, and you will want to find one that serves seniors. I have been doing this service for other families after my caregiving journey ended. I focus on the financial issues like paying bills, reviewing invoices, and maintaining the home and reporting back to adult children who aren’t near mom and dad.  I find that within the first month I find a variety of ways to eliminate robo-calls, save hundreds of dollars on unused services, and even access unused benefits for care services. I can also make a direct introduction to the right solution, be it a personal care assistant, elder-law attorney, or auction house.
  5. Tell your siblings what you are doing and offer a summary of accounts … and oh, yeah, compensate yourself for your time if you are able to do so. The reality is that caregivers on average give up over $324,0044 in lost wages and retirement compensation. My husband and I added in compensation for those individuals who are supporting us a DPOA and trustee — and are working toward ensuring that we can afford to compensate our loved one for stepping up because we know it not only can result in lost wages and opportunities, and is a job that would be compensated if we hired someone to do it for us. Thanks for your comment DW, I can’t believe I forgot to include this!

Whether you are an only child, or your siblings have let down mom and dad and aren’t stepping up to help, find ways to support yourself in helping your loved ones.

I regret not bringing in more help when Mom was alive. Instead of spending time following up with the community nurse, I could have been out enjoying a meal or and event with my Mom.  Hindsight is 20-20. Reflected. 

Decisional Capacity and Dementia

NAELA version 3 16A diagnosis of cognitive impairment or even dementia does not mean that the individual has lost their ability to make or change estate plans. Start with the doctor who diagnosed them and ask if they can write a letter documenting their assessment.

We had an awesome geriatrician that got involved with my parents. He told me to get their plans updated immediately and wrote a letter stating that they still held decisional capacity. My parents did know and understand that we needed to update their plans.

Because we did not know how long we would need to care for them we insisted that all four of the adult children were named in the Durable Power of Attorney. The lawyer suggested against it stating that we should name one and have secondary, tertiary … However, we had that initially, and since my sister was listed as the primary, and me as the secondary, trying to get it recognized was headache inducing. I was the local adult child so needed to be the primary. I had to bring her resignation, then they often wanted to contact her. It just created more work when I was already overwhelmed.

We also had the benefit of caring for our parents in a unified capacity for nearly two years and have navigated a variety of bumps in the road. Should I move or die, I wanted to make sure one of my siblings could easily step in to help my parents.

Estate planning for incapacity is difficult and there are many landmines. I hope you find that you still have options even when dementia has been diagnosed. I also suggest you get a referral to a lawyer that specialized in Elder Law. You can do a search on NAELA.  It’s complicated and should your loved one lose the capacity to make decisions, the last thing you want are plans that fail. Recommended. 

I’m Overwhelmed and my Siblings Are Not Helping

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With my siblings and parents.

The local adult children will generally carry the larger load. They probably have spent more time with a parent and also see changes in their behavior that won’t be noticed on a phone call.  Often, the real test is spending time with the person.

Early cognitive issues just don’t get diagnosed very often. Of the those I know that were diagnosed early, the individual noticed and often had loving friends and family mention changes, and they pursued it. I will say when I went to the doctors with my parents and I asked about changes, the doctors all shut me down. It wasn’t until my parents showed up in two Emergency Rooms in two days and ended up seeing the same doctor that a doctor finally addressed what to me where very obvious cognitive issues in my parents.

What happened with my siblings was totally separate. I had noticed the issues and told my siblings. They didn’t see it. I visited often and tried to put my finger in all the dyke holes to help and was driving myself mad. I tried to illustrate to my parents the ways they were failing. While my Dad seemed to listen and even offered to go get cognitive testing, my Mom refused and debated every point. More often than not, I would leave my parents with both of us sad and angry. I eventually gave up.

As I was giving up, my siblings started to see and understand that our parents were failing. They came to town and we staged our first intervention. They had to talk me back into helping. Thankfully, we all got along but we still had many issues to address.

Set up Conference Calls on a regular schedule. 

I started this blog in part for my mental health, but also to document what was going on and not have to tell 3 siblings and extended friends and family what was going on. However, my siblings and I really needed to have a dialogue about what was happening and how we might help our parents. I set up the calls using a free service called TalkShoe. One of my brothers would set the agenda. We started to talk through ways they could help.

Give each Sibling a Job

We didn’t do this right away, but having the conference calls helped me share key issues and allowed my siblings to ask questions and be involved. As we had issues, we started to figure out who could step in to help on key tasks. We needed to sell their townhouse, review the contract at their retirement community, arrange to clean out/auction off the furniture they no longer needed … among managing the day-to-day.  They also started to rotate on regular visits since living with them helped understand what was really occurring since they could no longer accurately share news on their day.

Take on the Onerous Tasks

When my parents kept driving after their licenses were revoked. I tried to hide the cars. They found them. It was one of the many times their resourcefulness and ability to do things astounded me and my siblings. My brothers came to town and took the car keys away. They told them why they were doing it and drove the cars away. They stepped up and for once, I wasn’t the rotten kid.

Over time, my siblings saw how much I was doing to help my parents. They knew I left my corporate job because the strain of raising kids, caring for them, and being a full-time employee was wiping me out. At some point, they suggested that I get paid for my time. It wasn’t going to replace a salary, but it was welcomed as I transitioned and started working on building MemoryBanc to help other families be better prepared for the rest of their lives. What I know now is that many estate plans now include provisions to compensate family members who step up to help. We were sure to include it in our updated plans.

I do know that not talking is a great way to foster frustration and hurt feelings. What we did recognize is that we were losing our parents, the last thing we wanted to do was lose our sibling relationships too. I hope that you and your family will start by scheduling regular calls to talk about how to help your loved ones as well as each other. Suggested.