Memory lane
As I tripped down Dad’s memory lane, I found he and I, arm in arm, skipping to the beat of a familiar tune. As I read more of Dad’s journal entries, I was astonished and saddened at how unhappy he seemed. Caregiving has received due attention recently. It is not an easy path and is so often linked to sacrifice and overwhelming challenges. In spite of this, I wish I had another opportunity to care for Mom and to support Mom and Dad as they cared for his mom. I wish I knew then, what I know now. April 1999, Dad writes:
“The real sore point is that after 13 years after retirement, there is not an open path out of this blasted heat and humidity of this miserable climate of Florida in summer. The reason is that we are still obliged, whether self-imposed or not, to visit Mom daily or almost daily because that’s the way it is, and has been.”
Ironically, in 1993, I said I would never live in Florida again. The humidity in the summer was unbearable. In 2014, Joe and I returned to the US from France to help Dad with his nonagenarian activities. I told him that I had promised myself that I would never again live in Florida. His response, “It’s not so bad. Just stay inside.”
If you don’t know where you are going…
Dad gave me a book when I was 18 years old, If You Don’t Know Where You’re Going, You’ll Probably End Up Somewhere Else, by David Campbell. The gist, certain opportunities cease to be available as you age, so try everything and follow the varying paths while they are still viable options. For example, when I read the book there was an upper age limit on joining the Peace Corp, age 35. That is no longer true and it is back on my list of options. In 2014, Dad imagined he would no longer be able to escape the heat and humidity of Florida. That door had closed. But had it?
If I had known six years ago, what I know now, after discovering these journals that predicted my present, I may have seen the irony, the paradox, the way forward. I may have been able to help Dad see that it wasn’t too late. In May, 1999, Dad wrote:
“Does not make sense to be stuck in a place, a way of life, a location to caregive if the person given care is able to accommodate a move.”
I get a bit lightheaded when I read that entry. And this one:
“The present state of life. We are in a bind and don’t know what to do to get out of it unless give up ingrained sense of responsibility. We are held in a web of family responsibility that was not planned for…”
Alternate realities
I wasted a few years on anger and resentment that swirled in a downward, spinning spiral of miscomprehension. My version of reality, the choice about where and how Joe and I were going to spend our 50’s was out of our control, was founded on fear. Dad’s version of reality was also founded on fear. He was not able to imagine a change. It terrified him. AND, he didn’t need help. I need to repeat that for myself. He didn’t need help. He was managing just fine and anything I offered was value added, not necessary, just nice to have. In his version of reality, Joe and I were free to live wherever we wanted. He was not wrong.
The reality that Joe and I lived in, the one where we had seen the signs and knew we needed to be close, wasn’t any more real than Dad’s version. There was a reality in the middle that I now see with the clarity of hindsight.
“In this treacherous world/Nothing is the truth nor a lie./Everything depends on the color/Of the crystal through which one sees it.” ― Pedro Calderón de la Barca
Understanding Dad’s wishes
Like many adult children just dabbling in caregiving responsibilities, I saw an Independent Living Facility as an opportunity for Dad’s independence and if I am being honest, mine. They offered everything that he had given up and more. The places we visited were wholly unlike the skilled nursing facility where his mom resided during her last years, 101 to 104. In April, 1999, he wrote:
“If at all possible keep loved ones out of a nursing home, but may be necessary if years are extended beyond selves or others able to handle. The physical and mental does not end, but deteriorates to point where several people must assist in existence. Surroundings that speak of ending, not beginning or growth. A life of keeping life going with the basic needs of medication, food, comfort and little else. A place that no one wants to be, but live long enough and will.”
I think the memory of his mom in the nursing home and his general fear of life in a facility outweighed the pool, fitness equipment, church services, happy hours, outings and interaction with others. Also, he did not like seeing the canes and walkers. Dad looked at Independent Living Facilities, put deposits down and changed his mind. “Over my dead body”, was the most recent stance in 2018 when he demanded that I get his deposit back. We closed that door together.
Hindsight
This entry, written in July, 1997, caused me to stop breathing for a minute. Dad wrote:
“A separation of parent-child must take place when they leave the nest. To cling to the child to hold on to him-her is a mistake. LET THEM GO. Also, in doing so, set a life of own that will not depend on them for support. They got you started in life, you got your children started in life. As adults, life should be under control and independent of children. Children should be free to live their lives, make their decisions and go on. WE ARE AT A LOW! To do what you want to do and how you want to do it is living. To be denied that freedom, is not.”
Just between us, in 2014, I wish we had explored the option to re-relocate with Dad to Nashville where Joe and I lived before moving to France, where friends and family resided, where we would have been a few hours from Joe’s parents rather than a 14 hour drive or full day of travel by plane, where the medical support was at least equal to Dad’s situation.
In addition, I wish we had discussed the option of moving to the Orlando area, closer to my brother and niece, where I grew up and would have the chance to reconnect with friends and have the support of family. This conversation would have been best had ten years prior. Ideally, more general conversations would have started 20 to 30 years prior when Dad was in his 60’s or 70’s.
“I have no desire to suffer twice, in reality and then in retrospect.” ― Sophocles
I am at peace with where we are and share this as an opportunity to spark an idea, a question, a more thoughtful way forward for families who often disembark on a caregiving journey without having prepared a packing list, itinerary or have a clear idea of the destination.
Same destination, unique journey
My hope is that I can encourage parents in their 50’s, 60’s and 70’s or their children in their 30’s and 40’s to start the conversations now. Open, honest communication will benefit the entire family regardless of who initiates the conversation. As examined in the book, If You Don’t Know Where You’re Going, You’ll Probably End Up Some Where Else, options diminish over time. Sooner is better. Begin to develop relationships with the important professionals in your parent’s lives. We are each on a unique journey that has more in common than just the destination. The questions below are intended to help you consider the different paths. This is for general information only; please contact your health care team, attorney or financial advisor for guidance on your particular situation.
Legal
Considerations
If a health care representative has not been designated, it is an important first step to ensure that your parents’ decisions are upheld if they are not able to share their preferences. The Five Wishes document is a great place to begin documenting your parent’s choices. With witness signatures, the document is valid in 42 states. Other circumstances may be better suited to an attorney. Elder law attorneys specialize in a variety of elder law issues. It is recommended that you locate an attorney whose focus matches your situation. As with all professional services, referrals and recommendations are a good place to start.
Talking points
- Do you have a Durable POA or a Health Care POA?
- Is your attorney familiar with elder law issues?
- May I meet your attorney?
- Do you have a living will?
- What are your end of life wishes?
- Have you made funeral and burial plans?
- Where is the legal paperwork stored?
Financial
Considerations
The most important place to start is to simply know where financial documents are kept. The next step may be monitoring accounts. Many family members first noticed signs of a parent’s dementia in the bank account. I have talked to adult children whose primary concern is that their parents are vulnerable to fraud. It is a valid concern. Dad paid over $60,000 in health insurance premiums for Mom after she passed. We were able to get only a very small portion of it back. This was not fraud, just a very unfortunate set of circumstances that were put in play 30 years ago as a favor (the details were complicated). Dad forgot. There was no mail trail. The pension deduction did not have Mom’s name listed.
At some point more oversight will be needed. Begin the conversations and don’t be discouraged by rejection. Occasionally, revisit the subject with empathy and openness. It is a sensitive topic.
Talking Points
- Do you have a financial advisor?
- What plans have been made that you are able to share?
- Could we set up a meeting so that I may meet him/her?
- Where do you bank?
- What insurance policies do you have?
- Where are the documents and the contact information for banks, brokers and insurance information kept?
Health
Considerations
A hospitalization or disease diagnosis can be the first time many family members have any awareness of a parent’s medical details. Suddenly, there is a lot to learn and with a rapidity that is ripe for errors. Mistakes and misunderstandings are inevitable in these situations regardless of how well we have prepared. Receiving an introduction to your parent’s current health and medical condition prior to a crisis, will reduce the learning curve. It will help you participate more confidently, ask questions and collaborate on decisions as an advocate for your parent.
Talking Points
- Would you be willing to share a list of your current healthcare providers?
- How do you like your PCP? May I meet him or her?
- Who are your other key doctors? What is your relationship like with them?
- How do you manage your medications?
- Do you have a medications list?
- May I have a copy?
- Have you thought about alternative ways to manage medications?
- How do you think a disease diagnosis or hospitalization might change your situation?
- Would you consider starting a health care journal to keep all of this information and to document visits in the event that a record would be helpful?
- Maintaining good health will help you to continue to keep your options open.
- How are you staying fit?
- In what ways are you eating healthy?
- Are you happy with the amount of time you spend with friends, on hobbies and interests?
Home
Considerations
I have a friend who, for years, assumed that she would move in with her mom when her mom began to need more assistance. Her siblings were working off of the same assumption, but there had never been a conversation with Mom. Recently, her mom said that that was never going to happen, it was a wake-up call. My friend’s mom was going through treatments and had significant health considerations. The conversation was overdue.
Another friend received a call from her mom. Mom said, “Your dad and I want to know if you want us to put a deposit on a retirement home here in Florida or closer to you in Tennessee?” That simple question ticked off many talking points and opened up the channels of communication for a more in-depth discussion.
Talking Points
Where would you like to be in 10 years?
- Where do you see yourself or what would be your ideal living situation in 10 years?
- How will your financial situation support your plan?
- Have you thought about creating age friendly spaces or downsizing?
- How do you imagine family will be involved in your future?
What if
- Using the “what if’s” for planning
- What is the worst that could happen?
- What is the best possible outcome?
- Discuss what options are possibilities for each of these outcomes.
Plan B
- What will it look like when family begins to help out?
- Have you considered what it might be like to have someone helping out with chores?
- If you had to create a résumé of the ideal person to assist you, what characteristics would you envision for the person you hire?
- What would the ideal schedule look like?
- There are many meal service agencies. Have you tried any of them?
- Would you like to take a look at grocery delivery? (Grocery delivery has saved us when we were overwhelmed with errands.)
- Home care agencies offer help with housekeeping and meals. Are you familiar with any in the area?
- Have you toured any retirement communities?
- There are alternatives to driving, would you be interested in trying any of them for longer or nighttime drives?
Plan C
- If you are no longer able to live on your own
- Is it realistic to consider moving into a family member’s home?
- Or, is a retirement home a better option?
Legacy
Considerations
It wasn’t until I read David Solie’s book, How to Say it to Seniors, that I understood the importance of legacy. This knowledge helped me understand many of Dad’s requests and repeated stories. It helped me understand why he fixated on certain parts of his life and exhibited minimal regard for others. It helped me, help him make meaning of those periods of his life by asking questions and sharing my own impressions of his stories. I wish I had taken more time to hear Mom’s stories. My Aunt, Mom’s sister, told me she regrets not writing the stories of her youth, about her siblings and life growing up in a family of 10 kids in a large hotel owned by their parents. A record of those stories would have been a cherished gift.
Outlive your life! ~ Max Lucado
David Solie tells us that, “Whether they express it or not, life review is the dominant psychological event of getting old… Senior adults focus on reviewing their lives to find what it meant for them to have lived.” He makes clear that this is the primary concern, following control, over their present and future. An important part of our role is to help our parents process their life stories in a way that helps them discover the meaning that will continue when they are no longer here. We can only fulfill this important task if we are not in a battle for control over legal, financial or independence matters.
Talking points
In conversation
- Ask open ended questions
- “Tell me about…” is a powerful prompt
- Use active listening skills
- Focus on values or themes
- Listen for new detail in frequently repeated stories and explore the meaning
Written or recorded form
- Consider documenting your life story and events that shaped who you are.
- This record will become an amazing gift.
- How can you capture and share these events and lessons?
- Written
- Photos
- Video
- Combinations
Communication
Considerations
How to have these conversations is arguably more important than what to say during the discussions. It is important to be clear on your objectives before beginning. Set an intention. Understand that the ultimate goal is to keep the channels of communication open. This is not a one and done conversation. Getting to win/win requires that you maximize empathy and minimize ego. Be curious.
Talking Points
- I’ve been thinking about my future and realized that we haven’t talked about your plans.
- I saw this article on aging in place and I wondered if that was something you wanted to discuss.
- What are your plans for the future? How can I best help you manage your plan?
How I can help
Sometimes it’s easier for someone else to initiate the conversation with family members. Difficult topics can be discussed without the emotion that comes with the relationship. Having a conversation with a non-relative also gives your parents an opportunity to explore their own thoughts. It helps them better prepare to share wishes and reasons. I offer consultations to parents who are in their 50’s, 60’s and 70’s. Above all, I hope to empower parents to initiate a conversation with their adult children about their wishes while aging.
After the initial conversations, I can help with the next stages of caregiving. We can discuss further planning, resources and specific challenges or worries. When you have had the conversations with your parents and created the foundation for a sustainable experience, you will be able to enter each stage with confidence.
Navigating the Caregiver River: A Journey to Sustainable Caregiving is available on Amazon. Also, check out the Self-Caregiving Strategies Podcast.
Schedule Theresa Wilbanks to speak on caregiving and empower the caregivers in your workplace or community with the 12 Sustainable Caregiving Strategies.
Advice offered is for general information only; please contact your healthcare team, legal or financial advisors to guide your particular situation.