I was talking with a friend recently and she was telling me about how her mother died when she was seven years old and her mother was 34. We talked about the very real physiological response to grief and loss that took her by surprise when she herself turned 34 and how her body and spirit felt under threat that year. I have heard that from many clients: their husband’s father died at 62 and suddenly as the husband approached 62 himself, developed cardiac symptoms. It could be genetic, or it could be the body processing grief and stress subconsciously, or both. Most do not even make the conscious connection until someone else points it out. It is nevertheless a real experience that involves the body demanding that you process your unresolved grief. The same friend whose mother died understood that at age 34, but was wholly unprepared for the blind-sided recurrence of anxiety and physiological response when her own daughter turned seven. There was this deeply hidden fear of something happening to her and the daughter being left motherless at the age of seven, just as she was. For those who have not experienced a loss at a young age or a parent dying “prematurely”, it sounds like a ghost story or mental illness. But for those who have gone through it, it is real and can have genuine physical health consequences. It can be around an anniversary, like “broken heart syndrome”, or around the holidays. Be aware of what is going on inside you and look for signs of unresolved grief in those around you, especially if they themselves are not the best at listening to their own hearts.
The other end of this weird psychic spectrum is what I call anticipatory grief. It is what I went through with my father’s Parkinson’s, it is what many cancer patients and their families struggle with, it is the very crux of the heartache of being an Alzheimer’s caregiver. It is experiencing “small” but significant losses as the person changes or declines or in some cases gives up fighting for themselves, as well as bracing yourself for a huge eventual loss that feels both inevitable and shameful to accept because it requires giving up hope. Holding hope and grief in tension is an impossible task. This is why we end up on an emotional roller coaster and those around us never know the right thing to say or do. And so the right answer is to listen, not judge. The right answer is love us where we are and know it is not a decision, and we are not beholden to stay in that space. The right answer is to be a safe person who recognizes you caught us at a moment in time where we are feeling and expressing what we are feeling, whether that is hope, despair, or something else entirely. Sometimes we cannot do that with the people who are closest because it feels like we are committing to one side of the hope fence or the other. In those situations, call a counselor, call Grief Share, call a death doula, call Family Link, but call SOMEONE. Whether you are the person who is sick or the caregiver, the roller coaster is different and real and exhausting. Do not ride alone.
I bring all of this up because the holidays this year will look different for many families. Depression and hopelessness is crouching at many a door. There will not be the parties and gatherings to distract us from our own thoughts like most holiday seasons. A quarter of a million families have lost loved ones this year that often did not get an opportunity to say a final goodbye as they would have wanted, at the time or even in terms of memorial services. Those who have loved ones who are suffering terminal illnesses or have significant immunity compromise, live in fear of the virus that could kill them before they have a chance to suffer through treatment. And those who cannot hope because of unresolved grief that is breaking their hearts or anticipatory grief that feels like a foregone conclusion to ultimate grief are drowning and need the courage, even if it is vicarious, to reach out for a lifeline before they go under one last time.
Well, let me just be honest. I have enjoyed a slower pace of life and fewer obligations these past couple months. But while I have had to sacrifice precious little during this pandemic, there is a team of people that I trust and appreciate doing more than their fair share in the midst of a pandemic. I am blessed that my mom is at an assisted living facility that has taken this very seriously from the beginning and imposed measures to keep their residents healthy. I am sure they receive “feedback” about it, but I am grateful they have erred on the side of safety and hope they continue in the face of Florida’s recent spikes in Covid-19 cases.
I know my mom does not understand why this is all necessary. She neither reads the paper nor watches the news. I know that she is tired of the 4 walls in her 324 sq ft apartment. She was clever enough to fracture her pelvis in 3 places in the first week of quarantine back in March. Not badly enough to need surgery, but just badly enough to require rehab for the past 2 months, so unlike many residents she had visitors in the form of physical and occupational therapists weekly. My mom is a crafty one, and such a planner!
I used to see her once a week. Now we talk by phone every few days. Thankfully with the occupational therapist, I get to do video calls with her on occasion. Early on I joked with a staff member about sending “proof of life” photos of my mom, the hostage, which I do receive periodically. She was low on laundry detergent, so I took the opportunity of dropping that off to also drop off a bouquet of flowers. She does not like pie for dessert, so I baked her some of her favorite cookies for Mother’s Day. Her birthday was late May so we had a fun outing to the ophthalmologist! We needed to finally see if the injections she received previously are doing any good to restore vision in her left eye after a blood pressure spike affected her retina, but we could not go in April because she was still not able to really bear weight due to the pelvic fractures and things were super uncertain with having someone poking around her mucosal linings. She had to go back into strict quarantine after leaving the facility, but an outing of any caliber was worth it.
A friend and I do a prayer walk (literally just walking around the building outside praying for the staff, residents and families) when we can. The staff has been doing all kinds of fun things to keep the residents entertained and in good spirits. Everything from dressing up like the Easter Bunny to deliver meals to creating dance videos with residents to send to the families. A friend sent my mom a card and her coveted word searches to keep her occupied. I gave my mom a stuffed hamster to keep her company since my own stuffed hamster cannot visit her except by video call. I am grateful that before this insanity I had established a relationship with several of the staff members and I know I can trust them to make good decisions. I am thankful that my mom’s doctor is responsive to the patient portal messages I send, so that I know that if things go off the rails like they did a couple weeks ago, they will be addressed.
I appreciate that the staff at this facility has been conscientious about precautions and so kind about attending to my mom. Although she was definitely sick of not seeing her friends at meals and having to stay confined to her room, I know the reality of what they have been facing could be so much more dire. This week, the facility has gone out of their way to work out logistics so that they could go back to some form of communal dining. This is surely a nightmare for the staff to escort folks down individually so that there are not too many people in the common areas and elevators simultaneously. There are shifts each meal so that instead of the old 6 person tables, they are each at 2 person tables. The benefits are immeasurable, however, in terms of three daily walks to and from the dining room, the comfort of seeing their friends are healthy and socialization even in masks, and the psychological perks of a change of scenery. All of these improve their appetite, physical and mental health. So, even though it is probably a huge undertaking, I am so grateful that they are working it out.
So, if you have little kids at home and have a loved one in a facility, send them some coloring pages by snail mail. Or find out what that facility’s guidelines are for deliveries of treats or flowers. Or how you can participate in an upcoming event like a car parade or silent auction. Because the residents need to know they are not forgotten and the staff needs an “attaboy” for all they are doing on behalf of family that cannot be there.
The problem with caregiving, in my opinion, is the steep learning curve and the high medical and emotional stakes of not having all the pertinent information at your fingertips when the need arises. Especially as a remote caregiver, this challenge feels overwhelming. You use websites, patient portals, calendars, ringtones, file cabinets, online banking and a host of other tools to stay connected and organized.
If I could recommend just one simple tool to combat this challenge (other than Family Link, of course!), it would be this: A SPIRAL NOTEBOOK. Get something that fits in your handbag so it is not one more item to carry. Maybe with a pocket inside the cover that you can slide a couple paper clips onto. Perhaps it can have scripture in the page footer. Or adorable puppies on the cover art. It can be a journal or something more in the school supply vein. Get a great pen in a fun color.
This notebook becomes your external memory so that you have everything at your fingertips instead of trying to remember everything.
1. Have a list of allergies and reactions listed.
2 & 3. Have a current list of medications with their dosages and a copy of insurance cards in the pocket, stapled in or transcribed, so it can be easily updated.
4. Have a brief medical history with surgeries and dates that you can reference instead of sitting in a waiting room racking your brain to reinvent the wheel. Most people have these on their computer and either forget to print it out prior to the appointment, or they are separate papers floating around that sometimes get forgotten at a doctor's office instead of just scanned and returned. Just keep a copy in your spiral notebook as your back up.
This notebook also records notes from doctor visits so you can convey information from one specialist to another. This notebook records facility staff names and conversations so later you can flip back to who said what when. Take notes on articles, videos and websites in this handy little pad. This notebook begins to be your go-to when trying to see patterns of behavior or trends in health issues instead of relying on anecdotal memory when making your case to advocate for a change in care. Set aside a coffee time to transcribe important things each week that are housed in patient portals like medication changes or questions for the primary care doctor.
It can also be your journal to process your stress and emotions as you persevere as a caregiver. It can be a means of looking back later over what your loved one expressed in these last months and years because you take a minute in the car as you leave to jot yourself a note of what they said. Use it to record what you are learning about yourself through caregiving. Or use it to relieve stress by doodling.
I keep my notebook in the trunk of my car in a bag that includes my POA and Health Care Surrogate documents, my mom’s insurance cards and checkbook, extra pens, a nail clipper and fuzzy socks because the ER gets cold. Something simple like a notebook can be the difference between being disorganized and conserving time and energy. It can help you focus during appointments and truly leverage a visit with a specialist. It can mean following up with the facility in just one email or phone call instead of a lot of back and forth. It can save your sanity and keep that hamster off its wheel in your mind at night. The return on investment is enormous.
Recently I visited Italy, marveling at the buildings that had been in that spot for literal centuries, or ruins that were a couple layers of archeological lasagna below a centuries-old structure. I thought my house in St Louis was old, clocking in at 85 years when I sold it! However, what I was reminded of in Italy is that in terms of “old”, everything is relative.
I have several care receivers who are in their 80s and early 90s who have widely different mobility, cognitive and satisfaction levels. Chronic health issues, deteriorating memory, mobility challenges all contribute to how “old” a person truly seems. The way a person processes loss of independence and grief, as well as their baseline ability to deal with change can also “age” a person. Physical or emotional upheaval can certainly impact a person’s perceived age, leaving them unrecognizable. Dwelling on the past or fearing the future tends to age us as well.
On the other hand, there are plenty of things that keep us young. Adopting new technology, learning a new hobby or skill, relationships that challenge us to grow and learn. I have a friend who has a goal to cultivate a significant relationship with at least one person in each decade of life (teens, twenty-somethings, thirties, etc). This allows her to be in touch with what is going on throughout different stages of life, not just her own. I think this diversity can also keep us young.
As I survey my loved ones, I am thankful that I have a church friend as young as 5 (who greets my stuffed hamster before greeting me, but nevertheless, a friend), niece and nephew who are teenagers, a social media diva posting this for me in her 20s, her husband who just turned 30, I am in my mid-40s, my travel buddy who is 50-something, walking companions in their 60s, pet sitting and Family Link clients in their 70s, beloved neighbors in their 80s and several care receivers in their 90s. It amazes me how similar some of these people are: their interests, their concerns, their joy. And how different they can be: their experiences, the losses they have suffered, the way they communicate. All of them enrich my life. They keep me focused on the present, too, because we are sharing our lives as it is happening.
Cross-generational and cross-cultural relationships can be a fountain of youth that provides margin for whatever may be crouching at your door that wants to “age” you. Or maybe you are quite young at heart yourself and can take years off someone else by sharing some laughter or sharing their load. Are you a caregiver and feel isolated because of your responsibility? Perhaps you are getting older and feel like every year brings another litany of friends and family who have died? Do you just need some perspective in your own life because you are in a hard season?
Scroll through your phone or your social media. How diverse are the people in your life? Try to reach out and find someone in a stage of life that isn’t like yours. Challenge yourself to cultivate a conversation or deepen a relationship with someone who thinks or believes differently than you. Perhaps it is while you get the oil changed in your car or maybe it can be online with someone who is home-bound. Your unique perspectives and experiences will stimulate your minds and your hearts as you share with one another. Stave off old age by living fully today.
When my father retired, his employer included a negotiated rate for a long term care (LTC) insurance policy as one of his benefits. It was $67 per month for the premium. He paid out $16,080 over 20 years that I am sure at times he resented, never imagining a scenario where it would be useful. Then, on June 7, 2012, things changed literally instantly. My parents were hit by another driver. Their car was totaled. They spent 7 weeks in rehab which was covered by their personal and bodily injury auto insurance. They were unable to ever return to their split-level ranch home. And I was suddenly in charge of their finances and realizing they had long been living only on social security and my father’s pension, no savings.
While I was sorting through the insurance issues over the car and personal injury claims, a friend recommended that I talk to a co-worker about options. He asked me if my parents had long term care insurance, but I assumed they did not. Then, in leafing through files at the house in New York, I found a file labeled LTC, filled with paper statements of paid premiums. I am all about going paperless, but in this situation, I was thrilled to have my hands on all the information in one place. I showed it to my co-worker who used to be in insurance, but said there was no way it would cover them because they did not have major disabilities or terminal diagnoses. My co-worker encouraged me to file a claim. He said, “It does not count against you if they reject the claim, so you have nothing to lose. Just let them decide if it kicks in or not.” So I called that day.
They sent a nurse out to evaluate my parents and determine if they were eligible for a claim. She noted my father’s concussion and memory loss, as well as his compromised mobility and frequent falls (which were later diagnosed as Parkinson’s). She also noted my mother’s dependence upon her walker and that she required assistance to do most tasks like meal preparation and bathing as a result of the injury to her hand in the accident. The nurse decided that they were not going to improve much beyond the intensive therapy they had already received in rehab and that both qualified for the LTC benefits they had paid into all these years. I was sad about their limitations but thrilled that they had options now.
The folks at the insurance company walked me through the paperwork and explained what would be required on my end. The way my parents’ policy was set up through my dad’s employer was that they each had a certain total dollar amount which either could be used to reimburse 80% of home care or 100% of assisted living costs. Once they reached that dollar limit, which was worth over 18 times what they had paid in, regardless of how much time that took, that was it. The reimbursement could only be paid to my parents, not the company providing care, so in order to use the money, I had to pay the bill first and then submit the bill to be reimbursed. So, every month I pay the assisted living directly and send the invoice to the insurance company. Then the LTC company deposits the reimbursement into my mother’s bank account and sends me a statement showing how much of the total claim is available after this deduction.
It gave me space to breathe and figure out how best to handle the funds from the car accident settlement and the sale of their house of 40 years without having to eat into that immediately. It gave me the opportunity to let them stay together after almost 50 years of marriage even though they had very different levels of care in terms of activities of daily living assistance. It gave me peace of mind that I could invest the proceeds from the sale of the house and the accident, instead of keeping them liquid and burning through them with no actual plan for my parents outliving those funds. It gave me as an unmarried caregiver the option to keep them safe and in a community environment while I continued to work full time.
So, are there hoops to jump through? Yes. Do I wish the balance remaining when my father died in 2015 could have been applied to my mother’s policy? Absolutely. Is the stability of a quality care facility without frequent moves and availability of staff in emergencies and the friends with whom my mother eats her meals and my infrequent hamster-wheel thoughts about my mother’s finances worth some paperwork and a few phone calls? Undeniably. If you are not sure your loved one will qualify for their long term care benefits yet so you are holding off, don’t. Call as soon as possible and ask for an evaluation. The worst they can say is no. If you are of an age that you are considering LTC coverage for yourself, call this week.
I recently discovered with one of my clients that “I will decide later” really means “I am having trouble making a decision and need your help to facilitate sorting through my options”.
I have a client who has spent a lifetime being sharp, capable and in command. In the past six months, she has had a cognitive decline which is causing a new level of confusion and inability to make decisions. This recent change is hard for her family to reconcile with the person they have always known, hard for me as a care partner to not overstep my role and yet offer timely and constructive assistance, and hard for my client whose husband had Alzheimer’s, so any cognitive jumbling is compounded with fear. It is also complicated by having to not only admit needing help, but recognizing a new need that is hard to define and articulate.
So, my role as a care partner is to patiently identify when we are hitting that decision-making wall and then try to navigate around it. I communicate to the family the changes I am seeing, how I find myself having to do more “hand holding”, so that they do not expect as much of her; but still allow her to do what she can - which is plenty! I let them know the ways I am facilitating the decision-making process so that they can employ some of the same tools when they need to have a discussion. I validate them when they express dismay about how much their mother has changed because it is not their imagination, but it is also not the same as what they experienced with their father. Change is hard and reassurance is vital.
I have to be creative when confronted with this wall and understand that she does not know that she is having a problem. She is convinced if she just puts it off until she has time to think, she can arrive at a conclusion. The reality is that there is a hamster on a wheel that is not actually reaching a destination where she can then declare a decision with confidence. She needs to talk it through aloud, have things written down, use a physical not virtual calendar, and have someone else check back to see if there was any follow through or provide visual reminders. So, I become the external processor of information and checklist checker and scribe and question asker and whatever other role needs to be played to move my client to a decision. Then we confirm the decision and communicate the decision and if necessary, document the decision as a reminder later on.
Thoughts are so easily derailed! Additionally, for the elderly, there are other considerations to factor in because often one decision also involves engaging help with transportation that needs to be scheduled or planning around medication, warmth or nutritional needs, as well as a host of other issues. It is the thought-equivalent to when leaving the house on an errand became more drawn out for your elderly loved one. No more grabbing your keys and hopping in the car!
Encourage your loved one to be candid with you when they find themselves having difficulty with decisions. Give them a phrase to use that clues you in to what is going on for them such as, “I am on the hamster wheel,” or “I need your help thinking this through,” so that you can help. Reassure them that the decision is still theirs, you are just there to help them organize their thoughts and come to a conclusion that is actionable. Sometimes they may actually ask you to decide for them if they feel too overwhelmed. You just need to be available and recognize that they are not procrastinating (unless they are!) but need your help to get unstuck. Try to build in time to ask questions and listen so you can reach a decision together.
Most friends who know me would likely guess “stuffed ewok”, and they would have been right before 2013.
That year I had a conversation with my parents about prepaying their funeral expenses and what kind of rituals they wanted done at the time of their deaths. You know, all those fun conversations that no one wants to have when everyone is healthy and people definitely avoid when someone is not healthy. However, after my parents’ car accident and moving them to Florida to be closer to me and my father’s diagnosis of Parkinsonism, I decided that working on their funeral arrangements was now a priority.
There were lots of reasons for initiating this on my part. First, my parents and I hold different religious beliefs, so I wanted to be sure I honored their wishes, which involved taking the opportunity to have a direct conversation when I had the person I intended to honor right in front of me. Secondly, I knew my primary focus at the time one parent died would be to comfort the surviving parent, not deal with a funeral home. Thirdly, I would be emotional enough in my own grief and that is not a great time to make decisions that impact time, money or other family members when the answers could already be on paper.
My mom’s response was typically cynical: “So, you are saying we can go ahead and die now?” My dad’s response was typically generous: “These are the couple things that matter to me. But whatever happens, just do the best you can and don’t worry about how it works out. You are taking care of us now, and that is what matters.” That was so freeing. It was freeing at the time he said it and at the time he died. He relieved me of the pressure and burden of fearing I would do it wrong or that my best wasn’t good enough. He also told me the things that were most important to him so I did not have to guess or weigh what anyone else suggested.
It is hard after someone is gone to try to recreate a conversation that you wish had taken place. If you are the one needing information, ask. If you are the one with information, provide it willingly. There is no hidden agenda when you are talking about final arrangements. The primary agenda is wanting to honor the person who was loved in life and will be missed in death. Talk it over now so you say the things you need to say and make the decisions you won’t want to make at a time of grief. Listen as much as you are able, know that it may be a series of conversations. And as far as it depends on you, offer peace.
My mother is my most low maintenance, undemanding care receiver. A few years back, my mom enjoyed going out more than she does now. We did things like going to the botanical gardens, doing a boat tour of the local lakes and canals, going to a play or out to lunch. Now, my mom is not a fan of outings. They are taxing both physically and cognitively. She gets tired easily and because she has to use a walker, she finds navigating sidewalks and store aisles cumbersome. However, nothing keeps her from her daily walk outside after breakfast, because she can control how long it is.
To be honest, she enjoyed those outings in the past, but probably just to humor me. She is content to stay put. Often people ask me, “Why don’t you take your mom out more?” or “Why don’t you sign your mom up to go with the facility to that activity?” For a while, I felt guilty not suggesting and cajoling and accompanying more than I did. It took me a while to realize that it was my dad who used to like to go and do. It was never my mom’s personality. My mom stopped reading books a while back, which was one of her favorite activities earlier in life. When I asked her about it, she said it was just too hard to follow the plot or remember from one sitting to the next about the characters. Now she loves her word finds. Like, obsessively loves them. So, I keep her stocked up. I cannot make her who she was, I can only meet her where she is at now.
This past month I took her to a local high school production of The Sound of Music. It was a family favorite growing up and my sister and I were both in high school drama club, as is my niece now. Not only was it a way to relate to the past, but a way to picture what her granddaughter in Iowa is doing. It did my heart good that even though she did not remember much of the plot, I could hear her humming quietly along with the familiar songs. At intermission, she actually said, “I am happy,” which is not my mom’s norm to communicate feelings. It was not a novel experience or an exciting day, but it made her happy. Which made me happy. Afterward, my mom had no interest in going out for dinner. She had heard there would be peach cobbler at the facility and that was her goal. So, I took her home, because that is what she wanted.
So, this Mother’s Day, if you are blessed to still have her, I encourage you to take a step back and do something your mother would enjoy as the person she is now. Maybe that is just having lunch at the facility together. Maybe that is going to get a manicure together. Maybe that is getting her a word find or coloring book. Maybe that is taking a trip. All we truly have is today, let’s use it to love well.
Is your loved one a talker? Have they successfully been through a procedure that is common for the elderly - cataract surgery, heart catheterization, hip replacement? They may be a great resource for another resident in their facility that has an upcoming procedure and is anxious about what to expect. If you know anyone who is elderly, you know they will go on and on about their health issues! This gives your loved one an opportunity to share their experience with someone and benefit that person with much needed assurance and comfort. It gives your loved one a sense of purpose and widens their narrowing world by reaching out to someone else.
The ALF activity director will likely happily refer residents to a "resident expert" who can allay their fears about a specific medical procedure that they have scheduled and want to talk to someone who has walked that path before them. It can create a bond and peer support that medical professionals cannot provide. Of course, there are HIPAA rules about sharing medical information on someone else's behalf, so if your loved one is the one who has had the procedure, the activity director can get their permission to be on the list of "referrals" and then when they know of someone with an upcoming surgery or procedure, they can arrange for the two to meet.
So, it has been my experience that independence is rarely lost overnight, but rather a bit at a time. This is not an esoteric political statement. It is about the elderly gradually losing their independence because as their physical or mental abilities begin to decline, they require more assistance. It can be painfully emotional, but also require an overwhelming amount of decision making in response. Those of us in the industry take for granted that these levels exist, but if you are only responsible for one person who is going through this for the first time, it can be like learning a whole new language.
Below are some basic guidelines about senior living options to help you consider what environment would best suit your loved one and possibly plan for the future based on medical conditions and other factors.
Independent Living: This is usually an apartment with a kitchenette or a small cottage where someone lives on their own but has access to help with certain services that were not available at home such as meals or transportation to appointments, sometimes even housekeeping services and a daily check in for safety.
Assisted Living: Often referred to as an “ALF”, this is typically a community that provides all meals, medication management, assistance with “activities of daily living” (ADLs), such as bathing and dressing, but tries to maintain the least restrictive and most home-like environment possible. Staff is on hand to help, but there may not be a nurse available, depending on the size and licensing of the facility. Depending on state regulations and individual facility licensing, one facility may be able to provide more or less mental health or nursing care than another.
Skilled Nursing: Often called “SNF” (pronounced "sniff"), this is the placement that comes to mind when we think of traditional “nursing home”. SNFs typically has a nurse on staff around the clock and the patient or resident requires care that involves specific nursing skills or constant monitoring. Sometimes it is actually a rehabilitation facility, but due to the higher level of medical care needed, it is “skilled nursing” not just “assisted living”. This may be required for a short term recovery after surgery or hospitalization, or it may be long term due to a degenerative muscular disease that limits transfer and mobility that makes someone unable to qualify as “appropriate” for assisted living facility care.
Memory Care: This can be either a dedicated facility or a separate section of an Assisted Living Facility that is “locked”, meaning that residents are unable to leave without a staff or family member due to their high level of confusion and tendency to compromise their own safety. Ideally, the space, activities, meals and staff training are all specifically designed to help residents with Alzheimer’s and dementia function optimally and to provide care in ways that decrease their agitation and other symptoms as a person’s memory declines. Not everyone who has memory issues needs memory care.
Anita is the founder of Family Link and wants to share with you some tools and thoughts to help you with the complex responsibility of managing the care of aging loved ones while still managing the other aspects of your life.