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The legacies we leave behind.

CandlesticksRecently I was asked “to recall a legacy–anything tangible or intangible, large or small–that I received from someone who cared about me.” I immediately recalled how my parents created a culture of healthy debate within my family. Around the dinner table, we learned how to disagree, without being disagreeable. We were taught to question and understand, along with a healthy dose of empathy.

Thankfully, the things my parents taught us helped my siblings and I navigate their care. We certainly had disagreements, and early on put in some rules to help us that I share in a prior post on Caregiving and Siblings.

We never second-guessed that we should step in and help, and after recognizing we were losing our parents, agreed that we didn’t want to lose each other along the way.  I know we were very lucky.

The journey as a caregiver allowed me to share an extension of this legacy with my own children. They have seen me care for, and navigate some very difficult times. Some things we shielded from them, other things I had no way to hide. They have seen me work with my siblings, heard us argue, and watched us overcome disagreements and work together.

This past weekend, my siblings came to town and we went through the last few boxes of our parent’s belongings.Before we began the process of taking turns to divvy-up items, we asked if there was something very important to any one of us. When it came time to go through the last of the silver, I spoke quickly and told my siblings the silver candlesticks that sat on the dinner table were very important to me. Without any hesitation, my siblings all told me they were mine. They were not the most valuable of items, but represent a lasting legacy my parents left me and I hope to continue to share with my kids.

I can’t wait to get downstairs and polish them. Excited. 

P.S. Thank you to my siblings and their spouses for helping clear out the final boxes of my parent’s possessions. At the end of the weekend, I felt like a barrier in my grief was lifted as we found loving homes for the last of their belongings. My job as caregiver for my parents has officially ended. 

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Letting Nature Take Its Course

driedleaf.jpgI learned the phrase “let nature takes its course” late in the game when helping my parents. For those of us who are trying to advocate for a loved one’s wishes, this is a powerful statement to know especially when you are dealing with the medical community.

Most members of the medical community are trained to help sustain or improve life. It took me a while to comprehend why my mom’s assisted living community kept re-initiating vitamins. On a quarterly basis, I would ask to see the medications. Even though they were supposed to contact me BEFORE changing medications, it didn’t always happen and I regularly had to address it. It started when they told me mom was refusing to take the medication she needed that was helping her anxiety, and that was causing a host of other community issues.* When I reviewed her medications, she had a host of daily vitamins. Mom was never a pill-taker, so she was exerting control by refusing to take any pills.

I know that nutrition and vitamins can help with a host of other issues, but I would request at the quarterly review that we discuss the merits of every medication mom was prescribed.

While I (and my siblings) managed through hospice with dad, and then with mom, it wasn’t until she broke her hip that I learned the importance of using this term and for requesting the right consults.

At 84, described medically as frail, and unable to walk on her own, a broken hip is a significant injury. Mom was with her personal care assistant and tried to turn and seemed to fall sideways. Her care assistant caught her before her hip even hit the ground so we didn’t really expect it to be a break. When it turned out to be a break, the aging life care manager I called in for advice suggested that the break happened when mom was turning. It made sense since while she normally bruised at the slightest bump, she didn’t even have a mark on the side where her hip broke.

The choices the orthopedic surgeon offered:

  1. Move her into hospice care with a broken hip;
  2. Remove the Do Not Resuscitate order, put her through surgery to med a broken hip for pain management.

Two totally crappy choices. As soon as they took mom for x-rays, I bent over sobbing knowing that mom was only going to have a few more days or weeks of life. Not the ending anyone wants, but she would finally be able to leave this earth and her dementia behind.

The woman who helped me, Debbie Aggen, RN, CSA, met me in mom’s hospital room and suggested I request a geriatric consult, and use the words “let nature take its course.” The doctor quizzed me a bit on my mom’s wishes, was I sure this is what she wanted? Is this in her medical directives? Thankfully, the answer to both of these was yes.

Mom was too weak to withstand surgery, so our choices became fate. For more than three decades, my mom told me that should she end up like her mother who had memory issues, I was supposed to ‘put a pillow over my head and take me out’. Unfortunately, there are really no options for someone with cognitive issues in the current “right to die” movement.

I never thought this was how it was going to end. Hospice arrived to help us keep mom pain-free while letting nature takes its course. She died on Christmas Day. While it will most likely bring me to tears for years to come, I was relieved I finally helped my mom escape the life with dementia she was living. Granted. 

*There are many schools of thought that with the right care, medication to control behavior would not be needed. However, since she was in a community, we couldn’t control how the other residents with memory issues would interact with mom and she seemed happier when she was taking the medications prescribed. 

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Don’t Yuck Someone Else’s Yum

cherrypiecokeI’m not sure why I thought a bike ride on this 90 degree Washington, DC afternoon sounded like a good idea. I wanted to exercise and suggested to my daughter that we ride to one of our favorite lunch spots. I knew the route was hilly and after our successful ride a few days prior knew she could easily manage a 5 mile ride. What I didn’t realize is that she isn’t used to riding up hills. After the first hill where she so proudly raced past me and beat me to the top, she asked me to ride home and get the car. I talked her into making it to the lunch spot. Turns out she only had a piece of cake for breakfast and was running on fumes.

My mom is the one that originated the dessert is a fine breakfast idea. I grew up knowing my mom’s favorite breakfast was cherry pie and coke. While I had no interest in it growing up, my husband laughed when I told him the story because he said I have sanctioned cake for breakfast for years. However, I wouldn’t have only eaten cake before a bike ride!

After we eat, my daughter feels better and tells me after we complete the second big hill on the way back that she’s telling herself “Your mom didn’t raise a quitter, so don’t you quit!” I am a pleased to hear it at first, but then share with my daughter that it sounds like negative encouragement or as a sports psychologist once called it “stinking thinking”. I ask her if she might consider another more positive phrase that would encourage her?

That is when she tells me “Don’t yuck someone else’s yum.” I turn that over in my head a few times and realize what a great point she just made. I also realize that I give this courtesy to others, so why aren’t I giving it to my daughter?

I have learned so much on my journey as a caregiver. I learned to watch without judgement, to not let things that I could not control drive me nuts, and to let others find their way. Now I need to learn how to balance those lessons with being a mom. Challenged 

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The Slow Waltz Into Dementia

waltzanimYears before my siblings noticed the changes in my parents, I knew something was wrong with my mom. She seemed more argumentative and unreasonable about things that didn’t used to bother her. My husband noticed too. I inserted myself into several annual visits with the doctors, but all concerns my mom poo-pooed. We were noticing my mom was repeating conversations, past memories were altered, and that she had a growing concern about my dad’s memory. While Dad was willing to try memory testing, my mom wasn’t.

Then all of us started to notice that our Dad who was quite joker, was less talkative. The home was a little messier, and they were socializing less. I felt like I was in a constant dance that never progressed in any positive direction, nor that I could impact.

Over the next year, my siblings and I tried two different interventions. Our parents were not interested in our concerns. They could never remember any of the times they got lost driving, the dual contracts signed for the same home repairs, and they dismissed our concerns.

We moved into what I still believe is the worst part of the caregiving journey. My parent’s didn’t recognize how poorly they were doing and we were really concerned for their safety as well as the safety of others.  We had to wait for a critical incident to happen.

Waiting for something bad to happen before action was taken wasn’t typical of my parents. They were planners, and had planned well. But the cognitive decline both of my parent’s were experiencing meant they were unable to comprehend what was happening, and even the united efforts of me and my siblings didn’t sway my parent’s beliefs.

Eventually, dad broke his hip and my mom needed my help. She didn’t know how to get to the hospital and had no idea how to really transition dad from the hospital back home. Thankfully, she welcomed my help and I was able to get dad into the rehab wing of their continuing care retirement community.

Things returned to the prior state of disarray once dad had his strength back and began to drive. We waited for the next event. Thankfully, the next issue involved a doctor who submitted the papers to have my parent’s licenses’ revoked. It became a problem when they tore up the letters and refused to turn in their licenses. They continued to drive after their licenses were suspended which caused our next major crisis.

The reality is that there is no easy road. You do what you can. Thankfully, I started this blog so it’s easy for me to look back on the three years that were very difficult. We finally got to a point when my parents welcomed my help, but the road was very steep.Reflected. 

TWO RESOURCES TO HELP CAREGIVERS

  1. This site will allow you to find the local support groups in your area.
  2. For a free guide filled with practical advice for caregivers, visit www.memorybanc.com/caretools

 

 

 

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Why a Trust Was Beneficial to This Caregiver

NewYear

My parents and kids celebrating a new year.

Most of us associate “estate planning” with death. I know I viewed it that way when my husband and I did our will the first time. It was right after we had our son and were taking a trip overseas without him. We wanted to make sure we had the plans in place in case we died on our trip. Very unlikely, but it is a big fear for many new parents and it’s usually the first time couples create estate plans. At that time, our plan consisted of a will and a durable power of attorney.

Good Estate Planning is for the Living 

After caring for two parents, my opinion of estate planning has radically changed. In general, lawyers do a terrible job of educating us on the legal documents every adult over 18 should have in place. The failure to communicate the benefits of creating powers of attorney (financial and healthcare) just adds overwhelm to caregivers already working to help their loved ones. Rightly or wrongly, most of us view estate planning as planning for what happens after we die.

If you are on the path to becoming a caregiver, you will need these two documents to be an effective advocate for your loved one:

  1. Durable Power of Attorney (DPOA). Simply stated, a DPOA allows someone to act on your behalf for legal and financial reasons.There are several situations where even a spouse needs to have this document to act on behalf of their betrothed.
  2. Healthcare Directives (otherwise called a medical power of attorney) gives an individual the ability to be your medical advocate and typically includes your wishes if you are severely ill or injured.

These two documents should not cost you more than a few hundred dollars. I recommend you work with a lawyer, because WHEN you run into resistance for the durable power of attorney, you will want the lawyers help.

The Department of Health & Human Services tells us that 70% of American’s turning 65 will need three or more years of long-term care services. That means most of us will need someone who can act as our advocate for our finances, and possibly even need to sell a home or use our assets to pay for our care.

My parents had property and a variety of retirement and investment accounts and set up a trust when they redid their estate plans in 2002. It made several aspects of managing their affairs much easier for me while they were alive and even more so after they passed away.

During my time as their primary adult caregiver, many of their financial institutions refused to acknowledge their durable power of attorney. We have a statute in Virginia that would have allowed me to file a lawsuit, but on top of caregiving, that was the last thing I wanted to add to my checklist of to-dos.

It doesn’t make sense that the trust was more accepted document, but it was and several elder care attorneys have confirmed this response from financial services firms. Luckily, I didn’t have to solely rely on the durable power of attorney that was declined by firms such as Wells Fargo, USAA, and Fidelity.

The trust gives you the ability to define how you want to live your life and for that reason, it was incredibly helpful to me when I needed to be able to help my parents. It also and include a host of instructions on how to use the money.

I’m not a lawyer, just an adult family caregiver who found this legal tool incredibly useful. Let me know if you would like the name of a trusted lawyer to help you draw up your documents. Believed.

 

 

 

 

 

 

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When Your Parent With Dementia Wants to Die

kayandkitty

Taken Christmas 2014. After an up and down year, mom passed away on Christmas 2015. 

My mother made it very clear to me that if she ended up like her mom, I was to either “push grannies chest on her” or “put a pillow over her head and take her out.” She was always very matter-of-fact about it. So when mom developed dementia and I watched sadness creep over her, I was pained that I really couldn’t fulfill her request for a wide variety of reasons.

The movement for Assisted Dying for the Terminally Ill doesn’t cover individuals with dementia. A friend once shared that a shot of potassium would do the trick, but which one of me or my siblings would do it?

The coping mechanism that has helped me was to focus on was what I could control. I had to fight to roll-back all the medications and vitamins being prescribed for mom. I was very open in telling the doctor that my job was to make sure we weren’t extending the low quality of life my mom was having. There is a balance. There were some prescriptions that would help avoid the skin tears that started to plague my mom. In her last year, I told the doctor if there was no option for pot brownies, then he needed to find her a happy pill. The reason I asked about the pot brownies is that I’ve had several families tell me this has helped their loved ones, and eating a brownie is something I know my mom would gladly do, while taking a pill was still something she resisted. The doctor was surprised by my request, and being in a state without medical marijuana, he suggested a medication that helped.

After mom broke her hip in mid-December, I was able to work with hospice to make her ending as quick and painless as possible. It has left a mark on my soul that still pangs me every so often. However, I knew that is what my mom wanted. I’m still not sure if the pang is guilt, grief, or just a combination of emotions.

Unfortunately, for those with dementia, there are few options to help.

When a daughter shared that her dad diagnosed with Lewy Body was asking to die, the pang I felt about my mom returned. This is torturous for both the person with dementia and their loved ones.

Recently, I ran across the story of Dennis McCullough in the form of his obituary who was the pioneer of the term “slow medicine.” As a geriatrician, he describes “slow medicine” as not a plan for getting ready to die, but a plan for caring, and for living well, in the time that an elder has left.

Back in 2008, he wrote a beautiful piece about Slow Medicine. I hope this idea can help you find peace on your journey. Confessed. 

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Protecting a Parent from Elder Abuse

WEAADEvery year an estimated 5 million older Americans are victims of elder abuse, neglect, or exploitation. And that’s only part of the picture: Experts believe that for every case of elder abuse or neglect reported, as many as 23 cases go unreported. This post is to honor June 15, 2016, which is World Elder Abuse Awareness Day.

While likely under-reported, elder financial abuse costs older Americans $2.9 billion per year (National Council on Aging).  When my parents started to slow down and I noticed they were a little more forgetful, my siblings and I went on high-alert.

Thankfully, when mom signed a contract with two different firms to repair a small hole in their gutter, one for $5,200 and one $1,200 for the same repairs, she called my sister sensing she needed help and we were able to step in and cancel the contracts. It was a major warning signal that someone could take advantage of our parents.

For the 34.2 million Americans providing unpaid care to an adult age 50 or older (Caregiving in the US – AARP 2015 Report) in addition to helping with their care needs, if someone is not helping with the finances, it’s important to be vigilant because of the growing threat of elder abuse. You can download a free white paper designed for caregivers to help you understand and organize the important documents you will need.

Some elder abuse is subtle. I watched as my parents started to send checks to a wide-variety of new charities they had not previously supported. Then I started to see new magazine subscriptions to publications they would never read. These were smaller, more incremental solicitations that played on my parent’s beliefs and forgetfulness. Within a year, both parents were diagnosed with different forms of dementia.

Many adult children struggle to help mom and dad, but there are a few ways families can work together to ensure their parent’s don’t fall victim to a scam.If you are starting to see new spending habits, three things you can do:

  • Offer to help in small ways to support your parent. The fear that a child will take away car keys or put them in a “home” are very real, so make sure they know you will just be stepping in to work side-by-side until they can manage again on their own. For more on this see last weeks blog on the concept of being a “care partner”.
  • Meet with an estate or elder care attorney if you do not have a Durable Power of Attorney (DPOA) or Healthcare Directives in place. You will need these to be an effective advocate for your parents(s) and doing this now will be invaluable should a parent’s health decline.
  • Contact Adult Protective Services (APS) if you have evidence of fraud. While there is little they may be able to do, they should be able to direct you if there is evidence of financial abuse. Before you pursue this option, I hope you will check with an elder care attorney.

The two ways my parents became super subscribers and diligent donors was from phone solicitations and incoming mail. Many of us have heard about the phone scams, but you can’t discount the mail as a potential threat to your parents. Many charities and publications thoughtfully word their solicitations using language that allows the reader to believe they have already pledged money as well as been subscribers. It’s incredibly effective. Warned. 

For a checklist you can share, here is a list of scams produced by the Department of Health & Human Services.

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