Tag: #workingdaughters

A Portrait of Alzheimer’s – And Love

A Portrait of Alzheimer’s – And Love

Meg

The truth is, maybe I couldn’t have lost my mom any other way.

What if I was still used to our daily phone calls, habituated to her answering my call or email within hours if not minutes, used to the certainty that she would listen to whatever I had to say – a quandary, a train of consciousness, the latest good or bad news – without judgment? If that had just stopped all at once, maybe I wouldn’t have survived it.

At first Alzheimer’s presented itself in repeated dialogue, repeated questions, consternation when a waitress brought the meal she ordered but not the one that fifteen to twenty minutes later she was expecting. In those days, the synapses just seemed to not quite be firing on all cylinders. Those who loved her knew something wasn’t quite right, but we weren’t exactly sure where the line between getting older and a significant problem lay. My mom had incredible social graces coupled with fierce pride so she could get away with a lot and the rest she clearly didn’t want to talk about so we trundled along like that for a couple of years.

Over time, the phone calls and emails became less frequent, more repetitive, and more confused. Often when I asked what she had been up to it was clear she was making stuff up that sounded like things she could plausibly be spending her time doing. Eventually we just talked about the weather. Out at dinner she’d look at the menu and then say, “I’ll have what she’s having.”

And then, after a couple more years, the phone calls, unless facilitated by an aide, stopped altogether. Sometimes she would hold her TV remote to her head when the phone rang, annoyed she couldn’t get it to work. But by then I had weaned myself off of our regular conversations. They had become so stilted anyway that it didn’t hurt so much. I was mainly consumed by that point in figuring out what needed to be done to facilitate her life and her safety.

At this stage, she couldn’t follow directions when she was driving somewhere new, couldn’t help my kids navigate the treasure hunt map at a children’s event to figure out where the gold doubloons were buried in the sandbox. She would show up at events that weren’t scheduled and miss ones that were. I can’t remember the number of ATM cards that had to be replaced. Executive functioning skills pretty much altogether went out the window – though she did somehow manage to sign up for an online dating site and execute on organizing a date at the local coffee shop. SO many times during this journey I have wondered, “how is THAT the thing you remember?”

It went on like this. Ironically, I look back and see how much was still left of my mom then. I knew enough to know that the Alzheimer’s diagnosis was a shot across the bow that forced me pay attention to every minute I had with her in a way I may have taken for granted if I didn’t know she had a degenerative, terminal disease. I mean, we are all going to die, right? But that doesn’t mean we pay attention when we are busy living our own lives. That’s natural. I try to look on the bright side that this gutting diagnosis made me go back home to spend time with my mom more often than I might have otherwise during that stage of my life.

I still cry sometimes for what I have lost over the years, all the what-could-have-been’s. Alzheimer’s continues to find new and creative ways to take a piece of my mom away and reignite my grief. This slow, trickling loss is death by a thousand cuts. As a friend’s mom used to say, “It’s not easy getting into this world and it’s not easy getting out of it either.”

I started this post thinking I would show one picture from every year my mom has lived with Alzheimer’s to display how it impacts a life, slowly but surely, over time. I started collecting photos – and it’s breathtaking how I hardly noticed the shifts as they were happening but now I can barely remember when she used to be able to speak. I realized, though, that my mom would want to be remembered for the independent, life-of-the-party, no bull, devoted mother, sister, aunt, friend, and wife that she was. The last 13 to 14 years are a chapter – a long one with lots of ups and downs, granted – during which she has exuded her characteristic grace and loving spirit but has also been more vulnerable and had less agency than her prior 68 to 70 years. Since I’ve written so much about her I thought I’d share some pictures that capture her the way I think she’d like to be remembered.

She’s still here, but she’s slipping away (in her typical fashion – on her own time, doing it to the tune of Frank Sinatra’s “My Way” till the very end). We have done the best we could with the cards we were dealt, and she also deserved to get so much more out of these years than this disease allowed.

I’ve had a lot of years to figure out my role in this journey and have worked hard not to lose myself in it. There’s a good reason that I started a blog called “Put Your Own Oxygen Mask on First.” I learned first what happens when you don’t, and then spent the rest of these caregiving years trying to take care of myself, too. I am applying those lessons as my watch over my mom comes to an end. For me, that means carving out time to be with my family and friends. It means getting regular exercise and not compromising on that 1/2 hour or hour of me time. It also means trying to eat well. Or just eat. When things get really busy and/or I am really sad, I tend to skip meals. That starts a cascading effect of low blood sugar, which manifests as fatigue and irritability, and then triggers cortisol and adrenaline bursts that cause increased anxiety (all of which can reignite my Rheumatoid Arthritis). In the early days after my mom was diagnosed I was downright skinny. But not healthy. This type of rollercoaster isn’t good for my body or mind and it certainly doesn’t put me in a good position to advocate for my mom or my kids. Always put your own oxygen mask on first before assisting another passenger on this journey of life!

As I begin a more reflective stage in my caregiving journey, I put together a list of logistical priorities that, in my experience, become important fast when confronted with the overwhelm of what it means to care for someone with an Alzheimer’s diagnosis. Check it out in my Dementia and Caregiving Resources. And, please, if you have the means, support Alzheimer’s research (I personally like Cure Alzheimer’s Fund, but, mercifully, there are others and work is being done constantly to try to figure this out).

Like I said, she is still here, but I know I’ll love and miss this woman for all my days. I already do.

Behind Closed Doors – The Silent Struggle of Caregiving

Behind Closed Doors – The Silent Struggle of Caregiving

Meg

Caregiving is the great, unseen work of a lifetime, whether it’s for aging parents, young children, or a person with a disability. It often goes unnoticed, uncelebrated, and un- or under-paid. It typically requires sacrifice of self in multiple ways, from dialing back career aspirations to a different look to retirement to shouldering physical (adults who are deadweight are heavy and those who are combative make care tough), logistical (ever tried to get someone who doesn’t understand words or can’t sequence directions to sit on a toilet?), and emotional (it may not be personal but some days you can only take being told to go away or shut up so many times) weight. In short, caregiving is a challenge that comes with a side of detriment to one’s emotional and sometimes physical well-being at various stages whether the caregiver is a family member or a paid aide.

Is it because we are taught not to stare when we see someone with a disability that we collectively generally don’t see or acknowledge caregivers? Is it because a lot of care happens behind closed doors so it’s simply not in our view very often (until we experience it ourselves and then suddenly we see these quiet laborers everywhere – driving cautiously on the highway with an older person in the passenger seat, pushing a wheelchair through the supermarket, waiting at the bus stop)? Is life just too busy to occupy ourselves with imagining what it’s like to give everything you have physically and emotionally at work and then go home to care responsibilities there, too, from one’s own kids to one’s own parents? Is it just too hard to face it so we ignore it? That is, until we are in it or need it ourselves?

Bradley Cooper recently produced a new Caregiving documentary that sheds light on this enormous blind spot and need in American society. It highlights different stories about caregiving and caregivers. It tells the story of paid and unpaid caregivers navigating the challenges and joys of this deeply meaningful work. By intertwining intimate personal stories with the untold history of caregiving, the documentary reveals the state and the stakes of caregiving in America today.

So much is broken about the medical system in the US, and caregiving is a separate but related dimension of that brokenness. Everyone needs it or does it at some point and yet there is nothing about long-term care that is straightforward or easy. It’s a big, complicated, expensive system. Reform is plodding – at best. Link here to my prior musings and stats about long-term care – Don’t You (Forget About Me)

Some strategies to make immediate improvements for paid caregivers:

  1. Pay workers a living wage. That should go without saying, but it needs to be said because it is not in any way a given; one cannot show up as one’s best self at work if one is barely able to cover rent and perpetually stressed about making ends meet even while working full-time;
  2. Create pathways for career advancement. Professional development and the ability to grow into better roles at work matter tremendously for worker satisfaction. By giving motivated employees a career ladder for upward opportunity, they will be more willing to stay, thus reducing turnover while increasing the quality of care;
  3. See the hard work these people do and acknowledge them. Like really notice them. Say their names, take an interest in who they are, and thank them for the non-glamorous and often grueling work they do. We’d (hospitals, assisted living facilities, and families) be so screwed without them.
  4. Check out organizations like the National Domestic Workers Alliance who work to highlight these disparities and change the status quo.

Some strategies to make immediate improvements for family caregivers:

  1. Show up. No one should have to take on the burden of caregiving alone. It’s way worse when a caregiver realizes that they haven’t been forgotten, but actually that no one has thought about them at all;
  2. Frequent check-ins: Even if it’s just a short text or phone call, regular check-ins can help the caregiver feel supported and not alone. It’s a small but meaningful gesture that can have a big impact;
  3. Be proactive, not reactive: If you notice the caregiver is struggling, don’t wait for them to ask for help—step in. Take on specific tasks – offer to assist with hands-on tasks like cooking, cleaning, running errands, or handling paperwork. The more you can take off the caregiver’s plate, the better. Often, caregivers won’t reach out for support until they’ve already hit a breaking point;
  4. Acknowledge their sacrifice: Caregivers often go unrecognized for the enormous amount of work they do, so it’s important to make them feel appreciated.

Besides working for policy change that can positively impact the care industry, as with all things: treat every living creature with respect, dignity, love, and curiosity. Everyone has a story to tell. Everyone deserves to be seen and heard. If you are interested, you can add your own caregiving story at Well Beings, an on-going, multi-platform campaign to address critical health needs in America. Lots of resources to learn from there as well.

Take care of yourself. If you are a caregiver, take extra care. Caregiver Syndrome – also known as caregiver burnout – is real. It is “a state of physical, emotional, and mental exhaustion experienced by individuals who provide care for a chronically ill, aging, or disabled person.” Symptoms include: feelings of overwhelm, sadness, anger, irritability, anxiety, depression, guilt, resentment, fatigue, body aches, physical ailments, and neglecting personal needs. Mel Robbins dives into this subject in her podcast Overloaded, Exhausted, and Ready for a Reset: 3 Doctors Give Their Best Advice. It resonated with me completely. I have BEEN THERE. You know what one of the doctors recommends at the end? Putting your own oxygen mask on first. Huh, I wonder where I heard that before?

Take a deep breath and maybe a couple minutes of quiet for yourself.

Photo by Artem Podrez on Pexels.com


Don’t You Forget About Me Part IV – The Cost of Long-Term Care

Don’t You Forget About Me Part IV – The Cost of Long-Term Care

Meg

Picking up from Don’t You Forget About Me Part III, which is now 2 years old because, well, I was stuck.

…I love where my mom lives, and also…

…it costs a fortune. Like mind-blowing amounts of money.

The exorbitant cost comes up in the NPR episode I was interviewed for (spoiler alert – I said it cost $100,000 a year. That was a lowball estimate that is now 2 years old – and, another spoiler alert, it doesn’t ever get less expensive). Over my years of caregiving for my mom, I have investigated options to save money for her care every which way possible (they are quite limited). You need to be full on flat broke (like $2000 left in your bank account) to qualify for Medicaid. And then many private care facilities don’t accept Medicaid.

What happens when you don’t have the money to pay for care, in home or at a facility? And then what happens when you run out of money? You know how moving is hard? And moving people with cognitive issues is really bad for them because it’s disorienting and confusing? And then often there are physical ailments that come with aging on top of it? If by some miracle your loved one just keeps on living for no good reason other than that they have some crazy will to live, you will almost undoubtedly run out of money before anyone steps in to help you. I was advised to get in touch with Medicaid when it looked like my mom had about 6 months of money left. Until then, you’re on your own.

“Most assisted living facilities provide what is considered “custodial care.”

Custodial care typically includes assistance with activities of daily living. These are tasks like eating, bathing, dressing, and using the bathroom. In some cases, it can even include health-related activities people usually manage on their own. Some examples would be taking daily medications or using eye drops.

Custodial care can be either long or short-term, depending on your condition. It can be provided in an assisted living facility, nursing home, or even in your own home with a home health aide under certain circumstances.

Medicare typically does not cover any costs associated with custodial care if that is the only type of care you need.”

Photo by Photo By: Kaboompics.com on Pexels.com

Medicare covers Part A and B medical needs, including doctors visits, medically necessary therapy, and prescriptions (if you have Medicare Part D). Supplemental insurance through an organization like AARP is a good idea to pick up the balance of medical coverage because there always seem to be copays and other things that Medicare doesn’t fully cover (hospital care costs are 80% Medicare, 20% supplemental last I checked; yes, it’s confusing. Very). Does long-term care insurance make a difference? The jury is out. Check out this website about long term care insurance and you tell me.

So, if you don’t qualify for Medicaid or you just prefer a private facility for any number of reasons, where does that leave you? In the uncomfortable middle is where it leaves you. Neither Medicare nor supplemental insurance covers a penny of the 4 main categories of cost for a private assisted living facility, which include:

  1. Daily rate – essentially this is rent charged as a daily fee on a monthly basis, basically a “tenant at will” set up;
  2. Service package – this refers to the level of care the resident requires, from needing to be fed to needing help with bathing, dressing, transferring from bed to chair and back, etc.;
  3. Medication package – medication, at least in Massachusetts, has to be distributed by a qualified nurse from bubble packs provided by a pharmacy;
  4. Continence management – in a true cradle to grave twist, many of us will return to diapers at the end of life.

If you live in a private care facility and, against all odds, you end up living longer than expected, you do in fact get kicked out when you can no longer pay. I thought there was no way that would never happen, but I was wrong. Most facilities work with residents to try to make it work financially, but what if the parent is nearing 100 and the kids are in their 70s and retired, too? At a certain point something has to give. Because who has a spare million dollars?

All of the above is true in a world where the US government funds Medicare and Medicaid. Should that change, an already unsustainable, true stuck-between-a-rock-and-a-hard-place situation simply gets worse. There has to be a better way than the expectation of bankruptcy as the health care end game. This reality requires taking regular deep breaths to prevent hyperventilating. Once calm, it’s time to think about realistic, actionable solutions and working with your senators and representatives to make those a reality. Also continuing to fund Alzheimer’s research is a very good idea. This is not an issue that is going away until someone figures out how to stop it.

The Bus Stop at the End of the World

Don’t You Forget About Me – It’s Personal

Don’t You Forget About Me – It’s Personal

Meg

As I mentioned in a prior post, I put a bunch of resources together in a Dementia & Caregiving Resources link on this site for anyone in a dementia-related caregiving role. Some I have used, others I just have come across in the last decade of being a caregiver to my mom.

When I started this journey I hardly knew where to turn. I needed a whole new vocabulary, and a pretty abrupt redirect from wiping baby bottoms, facing my own newly diagnosed auto-immune disease, and trying to get back into the workforce. For a long time – too long – I tried to juggle it all, not understanding that even when I wasn’t earning a paycheck I was still a “working mom.” But that’s another story.

The Dementia and Caregivers resources page is intended as a starting point for anyone in my 10-years-ago-self’s shoes, while acknowledging that it’s not comprehensive or vetted and that each person’s experience, needs, financial latitude, relationship to the dementia patient, etc. will be unique. I understand that in the early days/years after a dementia diagnosis there’s both a desire/need to create a plan and know what to expect toggled with intense overwhelm and grief. If you peak under too many stones too early what you see can be unimaginable and emotionally paralyzing. While I recognize that, hopefully readers can take what they need when they need it from these resources and reflections. It is very, very hard to face any of this.

For context on my own experience, I have had to learn not to try or to expect to be an expert in ALL things ALL the time. I simply don’t – and can’t possibly – know everything there is to know about caregiving for someone with dementia. Doctors tend to reel off medical terms and medications like I, too, have a medical degree. MMSE (Mini Mental State Exam) score? Namenda versus Aricept? ADLs (Activities of Daily Living)? What on EARTH are people talking about? I felt like I needed to know more than I did – for a time, that I SHOULD know more (the directive of the word “should!” rises again) so I did what I do, which is to carpet bomb with questions everyone and everything I could. I attended a caregiver’s course through the Alzheimer’s Association; I visited assisted living facilities to see what they were like, what they cost, how long the waitlists were; I talked to my mom’s doctors from neurology to primary care right on down to allergy and ENT, not to mention lawyers and health insurers, property insurers and banks. And, oh my gosh, Medicare and the Social Security Administration – God help us all. Those frequently left me in tears because damn if they don’t make an already difficult situation so much harder.

I used the Alzheimer’s Association helpline once very early on – it was free so no harm no foul. It was nice to be listened to, but without firm answers or a checklist my anxiety spiraled. They sent me reams of paper with lists of assisted living homes and god knows what else that just left me totally overwhelmed. As I recall it, there was no context to anything they sent about how to choose what would be a good fit for our family and budget, how to narrow the list down, questions to ask, when to even start thinking about this step. What I wanted was a guide, a timeline, and a checklist. Probably a good social worker could have provided a lot of that, but somehow we slipped through the cracks and were not assigned to one. Okay, I take that back, we were given a contact at my mom’s neurologist, but she never gave me the sense that she was really listening to me nor offered any actionable steps to address my concerns so it felt like we were not assigned to anyone. Plus it’s so incredibly hard to actually reach a human being at a doctor’s office. You can choose all the options you want when you dial in, but you are still going to end up in voicemail. And if the call is ever returned you are inevitably standing in the middle of the grocery store or holding a kid on the monkey bars at the playground when it comes. I gave up on her pretty quickly, and at the end of the day slogged through most of figuring out what comes next feeling pretty alone.

I should note before I go on that the definition of “senior,” “elder,” and “geriatric” get kinda squishy at this stage of the game. I mean, 55+ housing is often marketed as “senior” housing, which given my viewpoint of the calendar of life right now is pretty laughable. 55 isn’t old and so, therefore, perhaps maybe neither are seniors? I don’t really know anymore, but I do know that those terms can be triggering, no one wants to labeled any of them really, but apparently that’s where we are all headed and sooner than we might think. SO, as with most labels, don’t hold onto them too tightly.

At a certain point when my mom still lived 300 miles away, I worked with a couple different geriatric care managers (GCMs), which is a type of social worker specifically focused on elder care (and therefore typically familiar with all the dementias), a resource that I reference in the Dementia and Caregivers Resources link. I thought once I hired a GCM that I’d be able to kick back and reprise my role as a daughter while watching all the issues and decisions I was facing evaporate. Sadly, that was not the case. I still had to call all the shots, but now I was being billed an hourly rate every time I picked up the phone or sent an email discussing options. I mostly felt like a middleman but with really big bills. Maybe GCMs are kind of like travel agents. Do you need them in this day and age where everything is online? Not really. Can they be super helpful whittling down options, creating tasks lists, and making a plan tailored to your family and your needs out of the amorphous blob that is information overload? Definitely. At the stage where I hired my GCMs I had pretty much already planned the trip, so to speak, so didn’t feel like I was getting much value from them. In the early stages when I had no idea what to do and they were willing to listen as I slowly lost my own mind, they were incredibly helpful and I owe a debt of extreme gratitude to the GCM who took my calls in those early days and offered me a steadying hand and a sympathetic ear. Though the later stages were a miss for me, this is not the case for everyone. Some of the references I called before hiring a GCM said they absolutely could not have cared for their loved one without them.

Like I said, everyone’s needs and circumstances are different. Caring for people with cognitive issues is intensely difficult- it’s emotionally devastating, impacts all aspects of their lives and their family’s life, can go on seemingly forever with modest declines (or go super quick – and no one can predict what you are going to get or how it’s going to play out), there are no days off, and it’s extremely expensive. You grieve and live and care for them all at once, often for years on end. Hence, the support resources.

Lastly, if you are at all like me and caring for someone with dementia who is genetically linked to you, you might find that you can’t help but worry about what the future has in store for your own brain. It seems that the suggested course of action, since there isn’t really anything else yet, always comes back to a healthy diet, exercise, and socialization. The metrics of those recommendations are a little fuzzy, but generally what’s good for the body is good for the mind. Now the McCance Center at Mass General Hospital also has a Brain Care Score that offers a somewhat more personalized, science-driven approach to measuring and enhancing brain health.

Good luck. And don’t forget to breathe through it all. It does actually help.

Don’t You Forget About Me Part III – Resources

Don’t You Forget About Me Part III – Resources

Meg

Just a quick note here to say that I have added an entire drop down menu for various types of resources about dementia and caregiving. So check that out from the homepage menu.

Also, I had no idea that Rosalynn Carter noticed and has been addressing the hard work of caregivers for over 35 years. Until she passed away on November 19, I only vaguely knew who she was, and mostly it was as a team with former President Jimmy Carter. Today, as she is laid to rest, seems the best day of all to recognize the incredible contributions she has made to this world.