2020 was a year when we had more in common with our fellow human beings than usual. I could start ticking off the list—but you likely have the same top ten issues on the tip of your tongue.
With powerful synchronicity, the personal issues I survived in 2020 have informed my professional life as an elder law attorney. Today was the first time I returned to writing a blog entry. I was surprised by the draft entry I started in February 2020 that reads as follows:
"It will be one month tomorrow that my 93-year-old father-in-law, John has been living with me and my husband. Every time something extraordinary happens, I think, "I should blog about all the important things I am learning because it might be helpful to my clients." And if I hadn't been almost brain-dead from lack of sleep, I would have started this blog on day two. Now that I'm at day 28, it feels even more important for me to share my experience in hopes that others will benefit. So the good news is that at day 28, I am finally getting sleep and catching up on the lost sleep from the past several weeks. The foggy brain, dull headache and searching for a boost from food and beverage reminds me of when we had infants in the house. In fact, much about this experience--being a caregiver for an older adult--is similar to parenting. There are just twists that keep" [end of draft February 2019]
I am returning to this topic today because (a) I hope it is useful information for others, and (b) it shares a bit of my story for potential clients. I call it my top five lessons of 2020 that helped me survive (at least until today).
1. In-Home Caregiving for an Older Relative. Making the decision to live with an older adult who needs care is a process that needs to be considered carefully, prayerfully and repeatedly. I could fill an entire book with all of the important things to consider when making this decision, but for this blog entry, I have narrowed the list to a few topics.
- SPACE. Is there enough and are there barriers that need removing? For twenty years, I've been living in the same 1300-square-foot ranch. Living in a smaller space with an older adult has many of the same advantages as parenting children and teenagers. You can hear what's going on without being physically present, you only have room for what's absolutely necessary, and you can get to someone who needs help quickly.
We converted a screened porch into John's suite. It has room for his full bed, night stand, lift chair, armoire, china cabinet that serves as his office/desk, kitchen table 4 chairs, large screen TV, stereo with speakers, and bedside potty chair. The other major modification was to renovate our master bathroom to remove the tub and install an overly large walk-in shower and widen the doorway.
- PROFESSIONAL HELP
- Companion Care. John is fortunate to have a long-term care insurance policy that pays for "companion care" in our home while my husband and I work outside the house. I have lots of advice about choosing, hiring and maintaining good caregivers.
Because John's age makes him high risk, having outsiders come into our home to provide care was not an easy decision during the 2020 pandemic. For much of March, we provided 100% of care. We learned the risks to our own health were greater than the risk of exposure from a limited number of professionals coming into our home.
I recommend choosing a "Home Health Care Company" who employs caregivers because the company assumes much of the risk you do not want to add to your plate, such as screening the employees for drugs and criminal history, training care providers with the knowledge, skill and experience necessary to do the job, providing insurance coverage for employees for worker's compensation in case there is an accident in your home, and providing replacements when caregivers call in sick.
In my community, it is a buyer's market for hiring professional care. Therefore, good companies are highly motivated to provide all necessary services to meet the older adult's individualized care plan. If a company cannot meet your family's needs, look for another company that will.
- Aging Life Care Experts. I often recommend that my clients pay for professional assistance from members of the Aging Life Care Association.
On their website, www.aginglifecare.org, you can search for an aging life care expert in your area. I've seen and heard of too many situations that went south when families reached out to the "free" agencies and "experts" from the 1-800 numbers on television who offer services. Aging life care experts have specialized education, training and experience that can help you assess all of the important issues that need to be considered as you decide, among other things, whether you can successfully provide care in your home. We made the decision for John to live with us before the pandemic hit, so it was not a factor when we decided, but it is a factor now in our on-going evaluation about whether we can continue to be successful providing in-home care. Periodically assessing your situation, identifying both strengths and challenges will help you support your efforts and provide a reality check before reaching a crisis situation when people often lose their ability to be objective.
Aging life care professionals can help with this assessment as well as provide on-going practical advice about how you can achieve your goals. In my opinion, the cost is an important investment in your success.
- NAELA: Elder Law Attorneys. An elder law attorney can help with the legal documents an older person typically needs, Powers of Attorney (healthcare and financial), Wills/Trusts, and Advance Directives, but they can also assist in identifying and accessing information and resources about formal and informal care and how to pay for it.
I always recommend choosing an attorney who is a member of the National Academy of Elder Law Attorneys (www.naela.org) because membership is an indication about the attorney's investment and commitment to elder law issues.
2 & 3. Out-of-Home and Long-Distance Caregiving for an Older Relative. My 93-year-old mother's health started declining sharply in February 2019. She spent time in the hospital and I was able to help convince her to take advantage of her MEDICARE benefits and allow them to pay for rehabilitation in a skilled nursing community before going back home. While she was there, the Rehab started their restrictions related to the pandemic. As agreed, my mother moved back home to live "independently" for about one month. Because her needs were not being met, on April 24th, my sister asked my mother if she was ready to die. When she said no, my sister invited my mother (again) to move into her home where her needs could be met. My mother agreed.
- LONG-DISTANCE CAREGIVING. The drive to my sister's house is about three hours. When I was younger, a three hour drive was not the burden that it was at this point in my life. While my sister experienced the bulk of the burden for the in-home care, I too came to appreciate the burden long-tern caregivers experience. Some suggestions.
- When you are not on the "front-line" you experience strong feelings of responsibility, guilt, and even jealously and shame. These emotions can be triggers for childhood
TRAUMA experiences. Especially when you are dealing with a parent or relative, you will likely need to support yourself. Find and pay for a good therapist. (Short-term, goal oriented therapy is much more affordable than most people realize.) If you cannot afford to pay for therapy, you need to share with healthy friends on a regular basis. In my opinion, the investment in yourself is also an investment in the care of your older relative.
- My sister was extremely supportive of my need and efforts to be a long-distance caregiver. She allowed me to do the things that I could easily do from a distance like, pay bills, schedule appointments, participate in telehealth sessions, and call multiple times per day to check-in. For some families, using cameras can be a big help because long-distance caregivers can see for themselves (as often as they want) their loved one and this ability to be connected helps relieve stress and dimish the guilt of being absent.
- About month three, I began to see that I needed to travel more often to my sister's house to give her a break. I identified this need long before my sister did. She was gracious and welcomed me into her home. Toward the end, the hand-off for my mother's care happened within five minutes of my arrival because my sister was so sleep deprived. These visits allowed me to step into my sister's shoes as the caregiver and do things to support her as well as give me important time with my mother. The drive to and from became a bonus rather than a burden.
4. Hard Conversations About Death. My mantra to my sister about my mother's care was "follow her lead."
I knew my mother was in the dying process, but my mother wasn't ready to see that herself until August when she asked my sister, "I'm not getting better, am I?" My sister broke down in tears and admitted that while she was committed to support my mother's efforts to get well, she agreed with my mother, she was not getting well. They cried all day. I did too because my sister shared this with me at the time.
This experience with my mother reinforces many experiences I have had with clients starting as early 1990 when I worked as a social worker with hospice. And that is, good things happen when you have the courage and the relationship to talk openly about death with someone who is in the dying process. It only took my mother one month to decide she had had enough of life and she passed peacefully on September 12, 2020.
There were lots of ways that my sister and I followed my mother's lead toward passing, but ultimately, I believe it was her decision. This same principle applies to the passing of my brother-in-law just three weeks after my mother. While I cannot prove it, I believe we all have much more influence over our death then we realize. Allowing for these very hard conversations can be a blessing both in life, and as we grieve the loss of a loved one.
5. Becoming the Oldest Adult--and Acting Like It. Many of us know how hard it is to lose our parents. Others also know what it feels like to lose the entire generation and become the oldest members of the extended family. My mother was the last survivor in her family and in my father's family. Both were from large families, so I have had lots of opportunities to work through grief and to support others during my life. When I was in seminary taking Pastorial Counseling classes, I learned about the importance of supporting those in the "grief process." It is always much longer than we want to admit, and like losing someone to death, it can suck.
I liken the grief process to being in the ocean riding the waves. You know they will not stop, that you must either jump or dive through them to get to the other side, and sometimes, dammit, they blind-side you and roll you in the surf. You get up. You keep "playing" because you love to be in the ocean.
Life is like that. If we want to experience the fullness of love in living, we have to be open to experiencing the loss. On good days, I'm able to be the adult. I suggest one reason for this is that I'm not afraid to allow myself to be childlike and "cry like a baby," "throw temper tantrums" and feel the fullness of my anger while I wallow in self-pity.
2021 is coming! I have high hopes for many more brighter days than 2020. I know that I am stronger and more motivated than ever to help others survive.