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.
So, I stop in to visit my mom at her assisted living facility a while back. We are chatting and totally unconsciously, she starts raking at her lower leg with her nails. I ask what is wrong. She says nothing, and honestly, she is looking at her hand like she has no idea it has been furiously scratching. I lift her pant leg and there is an angry raised rash on her leg that I have never seen before. I was expecting just the usual dry skin from being indoors and her tendency to forget to moisturize. I call in a resident aide. They have never seen it before (even though they help her get in and out of the shower), and take photos to send to the doctor to get a cortisone cream ordered, because of course it is Friday. Thankfully, the dermatologist is coming on Monday to the facility and can take a look. But my mother has never had skin issues, and so is not on the standing list of residents to be seen. And so I need to sign consent to treat forms to get her seen. Turns out it is psoriasis, which apparently elderly people can be susceptible to as their skin becomes more fragile and their immune system is more compromised, and the dermatologist prescribes a steroid ointment to fight it.
Honestly, my mother would never have said anything to the staff or to me about a random itchiness. She would have assumed it was just dry skin and let it go on indefinitely. She did not see this as “worth making a fuss about” and because she has never seen a dermatologist before, she would not have requested to be seen. She definitely would not have mentioned it on the phone and the staff apparently have gotten accustomed to her independence and were no longer examining her very closely because she seems pretty with it and could self-report changes. The elderly only self-report a fraction of what is really going on. Sometimes it is because of memory issues impairing their ability to recall on demand or because of confused time lines of when things occur, sometimes they don’t want to be a bother, sometimes they are afraid it will imply something more serious they don’t want to deal with, sometimes they just don’t even notice something has changed because their bodies are betraying them at such frequency. Although the staff at an assisted living facility means well, they are not able to spend time in the resident’s presence just observing. Staff turnover means they don’t know what is “normal” for a given resident. Having eyes on your loved one can give them the advocate they need and you the peace of mind you need. They don’t have to necessarily be your eyes. Let Family Link be part of your care team.
Sometimes "crazy" is the body's way of telling us something is wrong. What is no big deal for those of us who are strong and healthy can be a very big deal for someone who is frail and has a weak immune system. Add to that mix the inability or reluctance to describe symptoms to caregivers and you have the perfect storm for "crazy". Check out this article about urinary tract infections in the elderly. This is often misdiagnosed because cognitive decline is "expected", so we attribute behavior changes to dementia and the infection remains untreated. Most nursing staff is really good about recognizing this, but with turnover, not all the staff knows what is "normal" for your loved one. Forewarned is forearmed. Know the signs and symptoms so you can ask the facility to rule out a UTI before they try to move Mom to memory care! https://goo.gl/V6PaEu