A change in perspective

This past week I had a small glimpse into what it must be like to need help for everything; from brushing my teeth to going to the bathroom to simply rolling over in bed. All this happened just three days after a wonderful Saturday spent celebrating my daughter’s wedding, dancing with my son and my husband, and being with my dearest friends and family.

On Tuesday, I had back surgery. I had a catheter, a port in my neck so they could take blood every day, a port in my wrist for direct injections, a drain in my back, and an IV. I had noisy things on my legs to prevent blood clots and I was hooked up to a machine that took my blood pressure and monitored my oxygen levels constantly and pinged incessantly. I went from someone who could walk five miles every day to someone who was applauded for making it down the hall of the hospital. When I saw my husband walk in the door of my room after my first night in the hospital, I cried. This morning, when he asked me what I was writing about and I said it out loud, I cried.

I’m back home now and getting around without a walker and improving every day. But not everyone is as lucky as I am, including my mom. For years, she and I used to walk the same way and, for a little while this week, we walked the same again. These past few days are just a brief moment in time in what I hope will be a very long, very productive life. I was able to walk away from relying on someone, sometimes someone I didn’t know, for the smallest things. So many of the people we love never will.

Christmas is such a busy time of the year and we all get pulled in so many directions. This year, I have no choice but to slow down, take a long look at the people I love and be thankful. So very thankful.


Well, that took a turn

I started writing this post a while ago not knowing that it would soon apply to me. I truly thought that after my two cervical spine surgeries all was well as far as my structural integrity goes. Poor assumption on my part. Lately, my lower back has been making its presence known; it has always been a bit clunky, but nothing so serious that ice or stretching couldn’t fix. Until this past month.

I’ve been having some sharp sciatic nerve pain that will not let up; it would take two miles of my normal five-mile walk for the pain to settle down to a low growl - still there but tolerable. So, I started seeing a chiropractor since that has always helped in the past. From the xrays, we could see what was wrong - she tried to give me some relief but I was making little to no progress. I happened to have a follow-up with my neurosurgeon last week so I showed him the xray and told him about my symptoms. He scheduled me for an MRI that night and Thursday I got the call - I have to have back surgery. All I wanted was a steroid shot so I could be on my merry way. I’m shocked, scared, and sad about the whole thing. Honest to God, is this real life??  

Now, on to my oh so timely, prophetic post.

As adults, we take on the role of caregivers to our children, our spouses, our parents, our pets, and occasionally our friends without a second thought. “I’ll always be here for you” and “If you need anything, let me know” are phrases that we speak without hesitation (most of the time) and, if asked, we gather ourselves up and take care of business. But what if we’re the ones who need help? And if that’s the case, who will take care of our parent if we’re unable?

I’ve thought of this a few times over the last five years that mom has been here. Besides the people who work at mom’s facility, I’m the one who takes care of her. I do her laundry, make sure she’s bathed, take her to appointments, handle her insurance and finances, and I pay her bills. It’s easy enough for me since I’ve been doing it for so long but what if I’m no longer able to do those things or I die before her? Of course, the place where she lives would take care of her physical needs; however, if I go down for the count, there’s a lot of details that wouldn’t be evident at first.

While searching for back-up plan ideas I found some helpful information by Rob Harris at The Caregiver Space website. Mr. Harris is a Senior Professional in Human Resources in addition to being a caregiver himself. This list is primarily for someone who still lives at home or with a relative; however, most of it can apply to those whose loved one is in assisted living or memory care. His suggestions are as follows:

  • Identify people who are ready, willing, and able to step in should you be away for any length of time. Decide who is able to make critical decisions (legal, financial, regarding health insurance, consult with doctors) in your stead. Make a list of these potential substitute caregivers, keep copies for yourself and give each person copies as well as copies of the following:

  • An emergency contact list of relatives, friends, and neighbors, and times they may be available should their assistance be needed.

  • A list of pre-screened, competent home health care agencies that you are comfortable calling or whom your stand-in can call for help.

  • A list of all your loved one’s medications, and how and when to administer them. Be sure the substitute is cleared to receive prescriptions from the pharmacy,

  • A list of any diet restrictions and food/drug interactions.

  • A list of their doctors, the doctor’s locations and contact numbers, plus a schedule of doctor’s visits. Make sure your substitute is cleared to speak with your loved one’s personal medical professionals.

  • An overview of the patient’s medical history, a timeline of events or a diary of activities so that the substitute can be up to speed with their regimen.

In addition to the above, I would also add a description of mom’s likes and dislikes along with any “quirks” or preferences she has. Even if all of her medical needs are taken care of, having someone around who doesn’t “know” her as a person could be unsettling and cause her unnecessary fear and frustration.

Most of us hanging out in middle age don’t really give a lot of thought to our own mortality. We worry about our kids as they drive off to college, we worry about our parents falling or becoming ill, or at the worst - dying; we are the worriers, we’re the ones that dust ourselves off and keep going. Until we can’t. And that, my mortality, is what will always catch me by surprise.


In the beginning

Everything has a beginning: thoughts, beliefs, ideas, human beings, relationships - I could go on but I’m pretty sure we’re on the same page here. As far as living beings go, we may not know the exact moment our children and loved ones began but, hopefully for as long as we live, we will remember the moment we found out they existed and our world changed.

There is also the beginning of the end. By definition, it’s the point where something begins to get gradually worse until it ends or fails completely. It’s the thing that sometimes you see coming and can prepare for or it’s the thing that happens, on a random day in a random month, that changes the course of the rest of your life.

I’m far from being an expert but, from what I’ve been reading and from what I’ve seen, it seems that for most relatively healthy, older adults the beginning of the end (in this case, meaning the end of living independently and the end of control over one’s life and well-being) starts with a fall. A fall that results in perhaps a concussion, or a broken bone, or a new diagnosis; that’s what seems to be the catalyst that can take us from being active, autonomous members of society to relying on a healthcare system that is already struggling to keep up. Our healthcare system, and others around the world, are ill-prepared for the numbers of geriatric patients who will need care far beyond an antibiotic prescription or a yearly screening and checkup. Here’s a little something to consider from the Forbes website:

“Elder and long term care is rapidly becoming one of the most daunting healthcare challenges of our day. Between 2015 and 2030, the number of people in the world aged 60 years or over is expected to grow by 56%, from just over 900 million to nearly 1.5 billion. By 2050, the global population of people older than 60 is expected to jump to two billion. In the United States, the number of Americans over the age of 65 is expected to double from roughly 50 million today to nearly 100 million by 2060.”

Also…

“Neither low, nor middle, nor high income countries are immune to the implications of this change. As people age, they suffer from more and more illnesses. These chronic illnesses are placing an increasing burden on health systems. Governments need to recognize the effects of demographic change, not merely on public services, but on the social climate of each nation. Countries will have to reconsider all aspects of their communities, from healthcare systems and methods of delivering care to how whole cities are structured. An aging population can also create an unsustainable burden at the household level. The physical and emotional burden of providing care to an aging loved one is compounded by the fiscal burden as well.”

Well, now. That puts us in quite the pickle, doesn’t it?

As far as dementia and Alzheimer’s is concerned, I’ll never know when it began in Mom. But I do know when the diagnosis happened - in the hospital, after a fall - and her whole life changed.  Sure, we remember odd behaviors and times when something seemed “off” but was it just because of the natural progression of getting older or was it a symptom? I do know when it became undeniable that something was wrong, and there are no words to describe that feeling. If it were me, would I want to know the exact moment the genetic flaw in my DNA fired up and started me down a course that scares the hell out of me? Maybe. And even if I could throw myself into being proactive about my healthcare, find the right specialists, and sign up for every single drug trial I could find, would I want my life, and the lives of the people who love me, to be overshadowed  by a battle I’ll most likely lose? I don’t know the answer to that.

Time out for a fun fact I didn’t know but thanks to Google and Wikipedia I know now: A gerontologist is a healthcare professional (with at the least an associate’s degree) that specializes in the physical, mental, and social aspects of aging. A geriatrician is a physician that focuses on healthcare for the elderly with a focus on promoting health by preventing and treating diseases and disabilities. I didn’t know the two specialties were different, I honestly haven’t given it much thought. However, I do know how to use affect and effect correctly so there’s that. Go me.

So, what can we do to delay the beginning of the end for as long as we can? We can eat right, exercise, and keep our minds engaged but really, that goes for just living life. Finding a good geriatrician could be helpful since a doctor with a background in geriatrics could take into account our age, medical history, lifestyle, and the medications we’re taking. In turn, we could potentially lessen the chance of negative medication interactions and perhaps find a way to take less of the medications that cause the most severe side-effects. For instance, blood pressure medication can cause dehydration which can cause dizziness which can lead to a fall. A reminder to drink more water could be extremely helpful (doing it would help even more). Overheating, low blood sugar, and low iron levels can also lead to dizziness which could result in a fall.

However, finding a geriatrician may be a problem. In a given year, fewer than three hundred doctors will complete geriatrics training in the United States. Given that the number of people who are sixty-five years or older is on its way to doubling in the next forty years, to around 100 million, we’re looking at a whopper of a deficit.

Of course, regular physicians can treat geriatric patients but some things may end up getting overlooked. For example, when was the last time your general practitioner took a look at your feet? For now it probably isn’t an issue; however, it can be tough for an elderly person to trim their toenails or take care of their feet in general. Why do I mention feet? Because overlooking them can cause some serious problems. The following is from an article written by Dr. Paul Dearden and Dr. Andrew Wines:

Foot pain, progressive deformity, and loss of function...are seen as a natural consequence of getting older. However, age-related loss of natural soft tissue fat cushioning, loss of skin elasticity, bony deformity, and difficulty with basic foot care can lead to significant problems that may compromise an older person’s ability to maintain their independence. In many cases these foot issues contribute to...problems that can increase falls [sic] risk, with its well documented associated morbidity and mortality.

The article is from a peer reviewed journal so the content is rather dry. But the findings, or the message, is incredibly important. Something so small as foot pain or change in gait can be the beginning of the end of an independent life or life itself. If it were in your power to delay the beginning of the end, just by tweaking your daily routine or practicing more mindful self-care, would you do it? If you’re still on the fence, take a side trip to a skilled nursing or assisted living facility and get back to me. If that doesn’t change you, nothing will.

 

 

What it takes

I’ve noticed people, including myself, mentioning that they’ve observed a change in themselves since they became a caregiver. There are the obvious changes; way more tired, more stressed, more patient, and more appreciative of times that are good. We’ve most likely gained a bit more compassion and found we appreciate kindness in ourselves and others a little more. Then there are the not so obvious changes, the ones that maybe only we notice. For me, I’m less patient; not outwardly, but in my head if that makes sense. And there’s always that edge of constant worry - worry about money, and wondering if I’m doing enough, along with the fear that goes through me when mom’s number comes up on my phone or when the phone rings in the middle of the night.

I’ve been listening to a Cognitive Behavioral Therapy (CBT) course on Audible. The subject has always interested me and I may as well learn something while I’m getting my miles in. The instructor includes recordings of sessions he’s had with actual patients; one of his patients, Maria, really touched my heart:

Maria and her husband, Jack, have been happily married for forty-five years. They had retired, bought a sailboat so they could explore the coast of Maine together, and were looking forward to this new chapter of their lives. Then he was diagnosed with Alzheimer’s.

I have no idea what it would be like to have a spouse with this disease and I hope neither Bill nor I will ever have to find out. But when Maria speaks about the worry, guilt, anger, and depression I can hear it in her voice and understand it from my point of view. She’s actively mourning her husband while he’s still alive; he doesn’t know who she is most of the time and he can no longer take care of himself. She’s doing the best she can because she loves him but it’s changing who she is. That’s the part I understand the most - this disease not only changes the person who has been diagnosed, it also changes the person who takes care of them. Pain will do that.

We all know there’s two kinds of pain; physical pain and emotional pain. I’ve often wondered, hypothetically, how much pain of either kind a person can take before it kills them? Delivering a baby is pretty high on my list of physically painful experiences - in fact, it holds the top two positions. I’ve experienced childbirth without an epidural twice; not by choice but due to crappy planning and a baby who was in a hurry. The thing is, with babies, the pain itself won’t kill you (although it sure as hell felt like there was real potential there) plus, there’s most likely a happy pay-off at the end. Thankfully, when we reflect back on physically painful events, we may wince at the memory but we no longer feel it.

Emotional pain is different; it can change who you are - you know, you’ve been there. There are songs I can’t listen to, places I avoid, and things I won’t do because of the pain I’ve associated with them. I’ve had my heart broken, I’ve lost a best friend, I’ve hurt someone I love, I’ve watched my dogs take their last breath, and I’ve experienced the deep pain of losing my dad. When I reflect back on some of those times I can still feel the pain - not as much and not as deeply as I did at first, but it’s still there. As awful as these experiences can be there is good that can come out of them; it’s through these experiences that we gain compassion and the ability to empathize with others going through something similar. How else are we able to witness a toddler having a tantrum and look at the parent with a “I’ve been there too and it sucks” smile?

Being a caregiver for a parent or spouse with dementia or any chronic illness is draining, emotionally and physically. And the emotional pain that comes with it is, for me, a slow burn. Of course, when mom was first diagnosed and I was trying to figure stuff out, the emotional pain and frustration had some moments that were anything but a slow burn - they were white hot with their intensity. But now, things have settled into a kind of normalcy; the worry is always there but it’s not as loud as it used to be.

So, where do you find the energy to keep going and still feel joy, happiness, contentment, and some semblance of control over your life? I’ve said it before but I think it’s worth repeating - to make the time to take care of ourselves is the best thing we can do for the people we love. A sleep deprived, stressed out, malnourished, depressed caregiver is not what any of us strive to be but it’s a role that seems to be incredibly easy to fall into. Plus, on top of it all, we’re harder on ourselves than anyone else would ever be.

Someone very dear to me had a mantra he would repeat to himself while taking care of his dad:

Today I will be the best I can be with my dad. And when I don’t feel like it, I will act like it. Tomorrow I will look back on today and I will say, well done.

Being the best you can be today does not mean perfection; it’s the best you can do with the physical and emotional resources you have right now. There are times when I feel frustrated with mom but nothing good will come out of me expressing that frustration to her, I’d be venting which only adds fuel to the situation. I’ve found if I re-frame what is happening, or let it go and move on, I eventually feel more in control and I don’t leave mom feeling like a scolded child. Many times it’s not your actions that can make or break a day, a visit, or an outing - it’s your reactions. It’s nice to sit down at the end of the day, pour yourself an adult beverage, and know you handled things in a way you can feel good about. Guilt and remorse isn’t a good look on anyone.

My friend, Jonathan Kirkendall MA LPC, has a series of videos  he calls “30 Second Therapy”. One of the videos is about preparing for a big life change and in it he explains how important it is to have internal and external support in place. External support meaning you surround yourself with people who have experienced something similar, like your friends, or a support group, or perhaps the Departure From Logic Group (not necessarily a shameless plug, we’re just all in the same boat). Internal support, as Jonathan explains, is a time to practice a mindset of curiosity, or self-compassion. When you hit a wall, rather than quitting and  feeling as though you’ve failed, think about how to get around it or how to work with this particular challenge. Take some time to visit his page, it’s so very worth a look around. Oh, and be sure to check out his story. Our history and what we do with our experiences is what makes us who we are, and he has done an amazing job.

I found an article at the Family Caregiver Alliance  site that addresses the special kind of stress that caregivers are under. Did you know that caregivers are more likely to have a chronic illness - namely high blood pressure and cholesterol -  and an estimated forty-six to fifty-nine percent of us are clinically depressed? No surprise there but, to get out of that cycle, you’ve got to get your own shovel and dig yourself out. Not an easy task when you’re exhausted but the only one who can fix it is you in whatever capacity that may be.

I mentioned Maria earlier in this post.  At the beginning of her CBT sessions I could hear the sadness and exhaustion in her voice - it brought tears to my eyes several times. With some coaching, Maria learned she is enough, she is worth some time to herself, and getting out and being with a friend has some pretty magical powers. Her situation, my situation, is not going to get better before it ends and the emotional pain will be there; however, it doesn’t have to take a front row seat all the time. The people we love deserve the best us we can deliver - there is nothing wrong with showing ourselves some of the kindness, consideration, and tolerance we show others. It’s not easy, I have to consciously make the effort, but I know it’s worth it.

“Take the great example of the 4 minute mile. One guy breaks it, then all of a sudden everyone breaks it. And they break it in such a short period of time that it can’t be because they were training harder. It’s purely that it was a psychological barrier, and someone had to show them that they could do it.”  - Malcolm Gladwell

There's always room for improvement

I usually feel like I’m doing a “good job” taking care of my mom - there isn’t as much second-guessing and panic as there was in the beginning (thank goodness), and as new issues show up I’m getting better at not overthinking and overreacting. I’m mostly ok with the realization that there is no fix, and no reason; it simply is.

All that being said, sometimes it surprises me how near the surface my emotions can be. I took mom to the dentist recently; she gets a cleaning every three months since her ability to care for her teeth has dropped off and she won’t let me do very much to help her. We’ve been doing our best to avoid any major interventions since the way mom experiences discomfort can be extreme and none of us wants to go down that path unless it’s absolutely necessary. During this visit, the hygienist noticed that a tooth seemed to be a little tender and mom was uncomfortable with it being touched.

I was asked about her brushing habits and about how much I was able to help which is an absolutely normal and valid question. The hygienist is a friend I’ve known for twenty years; she’s always kind and caring but for some reason, I felt tears start to well up. I’m doing the best I can for mom but any inkling that I might be failing her in some way makes me feel guilt I know shouldn’t be there. It’s hard to feel like you’re doing all you can but still falling short - even when it comes to brushing teeth. Even when it's 100% self-imposed.

Thankfully I have friends I can talk things out with, fairly decent reasoning skills, and a solid sense of humor. I’ve also been able to find some excellent resources that help me frame situations in a way I may not have thought of, change my attitude for the better (not all the time but, hey, I’m trying), and help me think about things that aren’t always comfortable to verbalize but oh-so-important.

Many of my resources are books - some I’ve found on my own and others were suggested or given to me. One of them, Stone Benches by Judith Ingalsbe, was recommended by a friend and I’ll be forever grateful - it’s that good and it’s made a huge difference in how I communicate with my mom. At first, I thought it was a little “sweet” for me, and the font just about drove me nuts but I kept reading and I’m so glad I did.

I will never be as wonderful a caretaker as Ms. Ingalsbe but her insights, stories, and information have made me a better daughter - I’m far less irritated by the little stuff, I know there is no point in reprimanding my mom if she’s being difficult; and, when she has a concern, for her it’s very real and that’s exactly how I treat it. Through this book, I have learned to say things that will calm her, point out something to distract her, or just reach over and hold her hand. It’s also made me realize that my feelings of isolation and frustration, of how mom’s dementia has changed me, and yes - the guilt, are normal. I’m not going to fall apart any time soon.

Your loved one is not capable of changing. This leaves only one variable in the equation capable of changing, and that would be you. The simplest gestures mean so much to an individual who has lost so much control over their lives. When possible, create situations where they have some control. It is important to build our loved one’s self esteem. For all our loved ones are no longer able to do, there is still so much they can do. Each one is a unique, wonderful human being with impressive gifts and abilities all their own. - Judith Ingalsbe

Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler is another book that was recommended. Although some of the subject matter in Knocking on Heaven’s Door is difficult and, due to our culture,  can almost be described as taboo - it is real, incredibly moving, thought-provoking, and beautiful.

In short, the book takes a hard look at how the medical industry is failing at end of life care - not failing us by not doing enough; failing us by doing too much. In 2010, Ms. Butler wrote an article for the New York Times, What Broke My Father's Heart, which was a precursor to the book. The response she received surprised her, as she wasn’t quite sure how readers would react, and it made her realize that there are so many others who are going through their own version of struggle and self-doubt.  

Ms. Butler’s story is far less sweet than Ms. Ingalsbe’s. She had a very different relationship with her parents and she is brutally honest about them and herself. Her choices weren’t always perfect and some of the thoughts she shared were hard to read while others were from a place of deep love. But that is part of being human; we make mistakes, we hold on to past resentments, and we learn that relationships can change and grow into something different and often better. As for me, I’d love to have a couple shots at a “do-over” button - it would make 3 A.M a whole lot quieter in my head.

Knocking on Heaven’s Door made me take a hard look at what I would do if mom had a stroke or a heart attack; often, it seems as though the medical field has a habit of looking at a singular condition rather than the entire person. As in Ms. Butler’s dad’s case - he also had dementia - when is medical intervention too much? If I were told mom needed heart bypass surgery or a stent or a pacemaker I’d really have to give it some thought. Before reading this book I most likely would go along with what a doctor recommended - most of us are conditioned to do just that. However, we don’t have to - we don’t have to agree to a procedure, or being moved to ICU, or another type of intervention.

If there ever comes a time when I have to make a serious decision about mom's care, I hope I can be brave enough to do what’s right for mom and her needs; however, you never really know what you’ll do until you’re knee deep in it just trying to find the right way out.

“As you move through this life and this world you change things slightly, you leave marks behind, however small. And in return, life — and travel — leaves marks on you. Most of the time, those marks — on your body or on your heart — are beautiful. Often, though, they hurt. - Anthony Bourdain

 

Changing locations

When mom fell and was diagnosed with dementia four years ago we knew the time had come to move her from Illinois to Oklahoma. We didn’t have a whole lot of lead time - we had known we would have to make decisions somewhere down the line but mom’s injury and diagnosis put us in the express lane. Not only was working between two states a nightmare; in addition, I had no idea what I was doing. I got lucky and found a wonderful place for her - she and I are very happy with our decision but there are so many things I wish I would have known.

For those of you who have found themselves in a caregiving situation or are just getting started and exploring what options are available, I thought I’d share what I and others I’ve spoken with have learned along the way.

First, I thought I’d gather up a few websites:                                                

A good place to start is your local Area Agency on Aging. From their homepage you can choose your state and gain access to:

  • Available services in your area

  • Mobility assistance programs, meal plans & housing

  • Assistance in gaining access to services

  • Individual counseling, support groups, and caregiver training

  • Respite care

  • Supplemental services, on a limited basis

AARP's Caregiving Basics is also a great place to start and you don’t have to be a member to access the information. They point out a number of important tips such as: don’t sign on the day of your visit, bring home brochures and pricing so that you can go over the information with other family members, and consider reviewing the contract with your financial advisor and attorney. There’s also a link to local resources and solutions - all you have to do is enter your zip code. Also included in the site is a Legal Checklist for Caregivers which can help you make sure you’ve got the important things covered.

Another helpful site, Samada, was recently brought to my attention. It’s easy to navigate as well as being an additional source to explore your options. There’s a page for care and housing options as well as an extremely helpful guide that explains the different ways to pay for long-term care including Medicare, Medicaid, Health Savings Accounts, and long-term care insurance to name a few. In the "money" section there’s an article that explains how to spend down assets to qualify for Medicaid along with helpful links throughout.

Now, here’s a little first (and second) hand experience:

Once you’ve gotten a preliminary handle on things, then this is where the collective wisdom of others comes in handy. Why reinvent the wheel when you don’t have to? Those of us in this situation know what it feels like and we have loved and appreciated any guidance given to us. For that very reason, we happily pass along what we’ve learned.

If you’ve already decided on assisted living, memory care, or an independent living facility what are some of the things you should look for? One of the most important sources of information for me was the residents themselves - do they look happy, are they clean, are they engaged? Does the staff treat them warmly and with kindness? Is there an aide or a staff member within your line of sight? Also, how are you received by the director or the person who is to show you around and explain pricing, care, etc.? You may be their 1000th potential client but, for you, this is your first time, it’s stressful, you have questions - lots of them -  and you should be treated with compassion and respect. As my friend commented about one of her visits to a retirement community, “if you aren’t listening to me I can assume you won’t be listening to her.” Exactly.

Make note of the general cleanliness of the facility, not just the model apartment or room they show you. Visit the restrooms, peek into a resident’s room if you can, and ask to see the kitchen. Not that you need to be reminded, but notice the smell. Accidents happen and that’s understandable but there should not be a pervasive smell of urine throughout the facility.

Once you’ve chosen and moved your mom/dad/spouse in, visit often and at different times of the day. Get to know the staff - they are your direct line to how your loved one is getting along - whether it’s what they’re eating; their sleeping habits; or, as in my case, how much they wander around in the middle of the night. It should go without saying but it’s worth a reminder: treat the staff with kindness and appreciation and learn their names - they have a tough job and the ones who stick it out and stay year after year are a special kind of awesome.

Introduce yourself to your parent’s friends within the facility - mom has several that look out for her and I love them for that. They make sure she’s in the dining room for meals, save her a place at bingo, and let her know when they see me walking down the hall. I really appreciate that last one - mom is given the heads up on who I am and I can skip telling her who I am. Another great benefit to getting to know their friends is you’ll gain a few more “grandparent” figures. I say “grandparent” because they’re always thrilled to see you, generous with hugs and compliments, and they’re concerned if your hands are cold. I’ve been offered blankets, sweaters, and gloves so many times - it’s so dear that they want to take care of me. No one can ever have too much of that.

A friend from Departure From Logic's Facebook group was gracious enough to share a few more tips: visit with the family members of the residents, eat a meal there, and join a local caregiver support group. Other than the obvious, a support group will provide you with a wealth of information - all the brochures and guided tours in the world won’t give you the insight that the people who are the recipients of the facility’s services will.

In addition, she had a few more ideas to keep in mind which I’ve summarised here:

Once you’ve narrowed down your search for a facility, if possible, have your parent participate in the decision. Also, you’ll want to keep the future in mind when choosing. If assisted living isn’t too far down the road, perhaps that’s where you should start - moving is difficult and stressful and can exacerbate certain health problems. *Melissa here - as a side note, the place that I chose for my mom has independent living, assisted living, memory care, and skilled nursing and, except for independent living, she’s used them all. Being able to maintain an ongoing relationship with the staff made it so much easier for her and me.

Be sure you know the procedure the facility uses to get your parent cared for if a medical issue arises. Do they call 911 first, or you? Are they going to put her in an ambulance and send her alone to the ER? This is important to know because many of our parents or loved ones are not able to navigate the ER by themselves and they need someone who knows them well to provide information, interpret their needs, and reassure them.

A question worth asking is under what circumstances might your parent be asked to leave? Dementia and Alzheimer’s affects everyone’s behavior a little differently and certain medical conditions can make taking care of your parent more difficult - what level of care requires more attention than the facility is equipped to provide?

Ensure you have everything in writing and take notes during meetings and discussions. It’s easy to forget small details, especially if the information is foreign to you; also, don’t be afraid to ask questions, be direct, and follow up.

Being an advocate for someone you love is a tough job and an important one. It’s hard to even know what questions to ask when something is so new and often emotionally charged - hopefully, this will give you a place to start and a little peace in knowing you aren’t alone.

“By three methods we may learn wisdom: First, by reflection, which is noblest; Second, by imitation, which is easiest; and third by experience, which is the bitterest.” - Confucius

What we leave behind

My parents’ stuff. Those three words have caused more non-movement on my part than I ever thought possible. Mostly because I don’t know what to do or where to start, and my motivation is hanging out in the zero place. Not because I don’t want to do the work, I do - I crave organization and having everything in its place. It’s because it seems so final and so cruel to reduce my mom’s belongings to the ones that are left in her small apartment.

My mom loved her furniture; she treasured every piece she picked out. She has an antique wash stand that she found in Big Spring, Texas sometime around 1966 - we had moved there when I was around one year old. She told me how she found it in an antique shop and since she couldn’t afford it outright, she put it on layaway for six months and went to the store once a week to oil and polish the wood. She found someone to cut a marble top for it and from the day it came home with her it had a prominent spot in the formal dining room in all the homes we lived in.

She also loved artwork. During the three years we lived in Germany, she brought home a print or an original drawing from every place we visited and we visited a lot. It was the one thing she was not going to go home without. The only place she couldn’t find one she liked was Amsterdam; I don’t remember the hunt too much but I’m pretty certain it wasn’t my dad’s favorite part. The hotel we were staying at had paper placemats that were made from a photograph of three windmills - I remember dad telling her that she should just take the placemat home and frame it. She did him one better; she brought the placemat home and hired an artist to do an oil painting of it and then purchased a lovely frame for it to sit in. Dad never made a suggestion like that again.

She adored collecting china, porcelain, figurines, and silver serving sets. She and my dad did a lot of entertaining in our homes so she had to be sure to have all the things, necessary and unnecessary.  We have at least three sets of individual crystal salt cellars with little crystal spoons. Cute and fancy but we had salt shakers so we didn’t really need them, right? Wrong.

Crystal and china were less expensive in Germany so she stocked up like a champ. The Officer’s Wives Club planned all kinds of trips and she was usually on them. One of the excursions was to what was then communist Czechoslovakia and she happened upon a porcelain factory that made beautiful pieces - white hand painted porcelain inlaid with emerald green glass. Come hell or high water she was bringing several home - I’m talking large fruit bowls and vases, not small trinkets. I remember how not thrilled dad was when he found out how much she had spent - but she loved them like they had tiny little breakable souls.  It wasn’t just the acquisition of these things that made her happy, it was the use of them and the care that she took with them that gave her so much pleasure.

I could tell a hundred stories about her things and when I go to the storage unit I can’t help but get a little lost in all the memories. There’s a passage from the book, Hourglass by Dani Shapiro, that brought tears to my eyes because it’s exactly how I feel about the finality of getting rid of what’s left:

It was easy to part with the contents of closets and drawers - the old sweaters, jeans, dresses, boots. The gold satin dress by the Italian designer, worn to a friend’s black-tie wedding ( they now have twins in the first grade), the scraped-to-shit pans, broken thermometers, stained dish towels. But to get rid of my mother’s sister’s china, for instance, is to cut loose the hopeful young woman who chose the pattern decorated with cheerful bursts of gold and silver confetti. To tape up that box and cart it off to Goodwill kills her all over again. Or perhaps this is sentimental and foolish. She’s dead…

One of my best friends sent me an article last year when I was lamenting the existence of the storage unit (it’s been a process, a really long one). It’s one of those things you read and remark, “well, hell”. The article is called, Sorry, Nobody Wants Your Parents' Stuff. Pretty straightforward, isn’t it? It's a good one and it includes some helpful links and great tips. It’s definitely worth a read if you’re in the same pickle I’m in.

I’ve already brought home the things that mean the most to me and now that my daughter has taken the leap into home-ownership there are a few things I know she would like. Most of the furniture has been donated or given to someone dear to me who needed it but there is still a lot. In addition to the “things” there are the photographs, probably thousands. I can’t throw those away, not yet.

I don’t need stuff to remind me; all the important things are in my memory, right where they belong. But I know what these things meant to my mom so it’s one more big leap that’s going to need an extra gathering of strength from me. 

First things first. What do I do now?

When we first hear the diagnosis of Alzheimer’s, dementia, or any other chronic disability, it’s overwhelming and, for most of us, uncharted waters. I’ve created a list of what I’ve learned and what others have shared. Collective wisdom is a powerful tool.

First, let’s get this part out of the way: 

Depression and anxiety are common in those who are newly diagnosed - bring this up with her doctor so she can be treated if needed.

Also, no surprise here, depression and anxiety are common in caregivers as well. Keep an open mind and speak to your doctor sooner rather than later; there is no shame in asking for help - it’s one of the bravest things you can do. The closest thing I can think of to form an analogy for how this feels is watching a car accident unfold in excruciatingly slow motion. The anxiety is a slow build but can become overwhelming at times because you have an idea of how it ends but no idea how bad it’s going to get. You are needed and loved - put your care first on the list.

Seek counseling for her and you, if needed, individually or together. A sympathetic and objective ear can help with sorting out feelings of anger, frustration, and fear.

Here's a great place to start thanks to Kathy and Amy:

Take pictures of everything and keep them in their own photo file on your phone and cloud storage: a list of current prescriptions and dosage amounts, your parent’s/spouse’s SS card, her driver’s license, Medicare card, insurance cards, DNR (do not resuscitate) order, advanced directive, etc. While they’re still driving include pictures of them, their car, car tag, and anything that would help to locate them should they become lost. This is a “so easy, why didn’t I think about it” tip that can prove to be invaluable.

Now, let’s get down to business.

What services will she be needing?

*Housekeeping/shopping/meal prep

*Home health

*Companion care - drop in to assist with laundry, shopping list, prescriptions

*Transportation - compile a list of friends who can help or, if she’s comfortable, Uber, Lyft, or other transportation services

*Begin using her pharmacy’s or health insurance’s mail order service if available

Paperwork

*Update her will

*Create a list of accounts, car insurance, life insurance, homeowners/renters insurance

*Obtain passwords to accounts (this can be touchy - at the least have the list in a known safe place that can be accessed by you only when needed).

*Create a list of all monthly bills and subscriptions

*Update or obtain a living will

*Put assets into a trust

*Research power of attorney - if she’s willing to do this now, it will be in place when it’s needed

*Medical power of attorney - this will give you and chosen family members the right to make medical decisions

Prior to obtaining a power of attorney, designate a beneficiary or beneficiaries to establish a TOD (transfer on death) registration on all non-retirement accounts to avoid probate.

In addition, do not put your name on her accounts due to liability issues. For example - if she were involved in an accident where she was at fault, the injured party’s suit could include your assets as well. The same applies to you - her assets could be at risk if you are involved in a lawsuit. There are several other reasons why and you can take a quick look at them here: Never add your child's name to your bank account, here's why .

If there are siblings or other living relatives interested in being involved with care, establish who will take care of what preferably with input from your parent or spouse.

If it’s an option, start looking into memory care/assisted living now to avoid a scramble later. If your family member isn’t a “flight risk” consider assisted living to keep them as socially engaged as they can be for as long as they can be.

If you’ll be going to doctor appointments with her (someone should accompany her), discuss what questions you and she would like to ask the doctor beforehand; you’ll want to make sure she feels included in the discussion. Direct the questions to her for as long as you can and, if and when needed, answer for her in a way that includes her even if it’s just reaching for her hand as you answer.

Keep a notebook dedicated to writing down what the doctor says and suggests and be sure to include the date of the visit and the particular health care provider and location. Keeping a current list of prescriptions here would be a good idea as well.

I’ve included a few links that I’ve found helpful:  

David Solie's blog. There are many parts that can be a huge help. From the menu on the right side, you may find the caregiver mind maps helpful.

National Association of Area Agencies on Aging

AARP's Caregiving Careguides

Alzheimer's Association

 

Reality bites

The reality of what I and others like me are going through with our parents (dementia or not) is far different from what a lot of the information, blogs, articles on caregiving, and support groups (ugh - no) are putting out there. I would never say it’s all negative and I would never say that what’s floating around out there is a bunch of guilt-inducing, anxiety increasing crap. However, for me, a lot of it is just flat out unrealistic.

I’ve learned a few things from some solid resources I’ve found. I’ve learned how to make mom comfortable and how to communicate with her. I’ve also learned how to answer the repeated questions in ways that don’t make her anxious. I’ve learned that the odd behaviors that seem to come out of nowhere and serve no purpose are not worth questioning; I just pick up the pieces and move on.

That’s all fine and good as far as how she feels, but what about me? What about the caregiver side of the fence?

We work so hard to keep our parents happy so, in my mind, I imagine their side of the fence is lovely; freshly painted white pickets, a well-manicured bright green lawn, and carefully tended flower beds. Everything is neat and in its place and if something needs to be fixed, it’s done right away.

Our side of the fence is a little different. The paint is peeling on some parts - other parts need to be replaced but, if it can hold out a few more days (weeks), we’ll get around to it. The lawn has a few brown patches and a few weeds; however, the weeds look like grass from the curb so good enough. Thank goodness for automatic sprinkler systems or the whole thing may as well be rocks and cactus.

I’ve struggled with putting this part of my life out there because, frankly, I don’t want to come across as frustrated or unhappy because I’m not. Not all the time. But, if I withhold the ugly parts and only share my more benign struggles, then what’s the point in all this? And, if someone puts a not so nice label on me - well, that’s their perception and there’s not much I can do about it. I certainly wouldn’t get into a sparring match to defend myself; I’m not here to change someone’s mind about what’s right and what’s wrong in this endeavor. But, if I’m honest about what I’m going through and it helps someone feel a little better about themselves and their thoughts, I’ve done what I wanted to do. We need to know we aren’t all alone.

I visit mom throughout the week and every Sunday, at 3 pm, I go to her place to gather up her laundry, change her sheets, straighten up her room, and make sure she takes a shower. I dread Sundays. I would much rather be spending time with my family, reading a book, paying bills, cleaning the house, or picking up dog poop. Really.

I’ll spare you the full description but I never imagined I’d have to give explicit instructions on every little step of taking a shower; from taking off her clothes to how to use a washcloth to helping her get dressed again. It is a running commentary that lasts at least thirty minutes and is interjected with her comments about the water being too hot or too cold and how cold it is when she is drying off. I do my best to keep the room warm and the door closed enough so that it holds some of the heat because I don’t want her to be uncomfortable. I also do all this because, only in my head, some of my responses to her statements are not very nice.

Fun fact: outside frustration doesn’t remain contained in its particular situation. It spills over into everything, no matter how hard I try to keep everything in its place.

I had one of my not so stellar moments this morning. My dog Amy is dying. She’s thirteen and has been having seizures and all the horrible things that go with that. She’s little so it’s easy to hold her when she needs me which is starting to be all the time. I asked my son to take care of her while I did some things around the house - at the rate I was going all my time was going to be spent on the floor and I have some things I need to get done. Anyhow, I walked by his room and he let me know that Amy had vomited. I jumped to the not unprecedented conclusion that he expected me to clean it up and I got pissed. Are you kidding me? I’ve got my mom and now Amy and I ask you to take care of her for thirty minutes and I still have to stop what I’m doing? I felt tears starting (my oh-so-adult reaction to being frustrated) and he looked at me and said, “No, I just wanted to let you know. I've got it, I’m cleaning it up”. I didn’t even say I was sorry right away. This isn't how I want to be.

There’s also the constant worry about money. I’m thankful mom has the means to live in assisted living but how long is that going to last? Her living expenses are just over $50,000 a year and that’s on the low end since other than dementia she’s healthy. Medical costs are barely a drop in the bucket. Maybe we’ll get lucky and her health will remain decent. Or not. If only I had a crystal ball - but, then again, maybe there are things I don't want to see. 

Now that I’ve mentioned cost, as a side note, let’s talk about having to take a crash course in Medicare - namely Part D. Medicare Part D is for prescription drug coverage and, if you get coverage, you need to sign up for it during the open enrollment period which is the three months before your 65th birthday or the three months after your 65th birthday. If you don’t, then you’ll be the proud recipient of permanent financial penalties.

Guess how I know?

Mom did not sign up for Medicare Part D during her enrollment period. Maybe because she had Tricare, which is insurance through the military, and didn’t think it was necessary? It was too confusing and she didn't take any maintenance medications so what’s the point? I’ll never know. However, I’ll tell you what I do know: for every month she went without coverage she incurred a penalty. And she went without coverage until I signed her up for it when she was 75. That’s 120 months, folks. Each month without coverage adds around 1% of the premium cost to the monthly premium. Good thing I was sitting down when the nice Medicare person told me what mom was going to have to pay for the rest of her life. Because she didn’t sign up when she was supposed to she would be paying, in addition to her premium, an extra $40.80 per month, which comes out to $489.60 per year, for the rest of her life. For a more in-depth, but still easy to read explanation about Part D penalties, go to AARP's Medicare Resource Center .

After I finally got her signed up I really wanted to call and ask her just what in the hell was she thinking by letting this slip? Her friends were all signing up and I’m sure she received all kinds of reminders in the mail. I could have asked her but she wouldn’t have been able to tell me so it would just be me letting off steam and making her feel bad in the process. There are no winners in that scenario.

There are a lot of little everyday moments that stop me in my tracks. Lots of opportunities for me to be angry. If I acted out every time I felt some snarky comment bubbling up or said what I really thought at the moment, who would be the miserable one? Being gentle and kind isn't easy sometimes and giving up what you thought was free time really sucks. There's a balance in there somewhere and I'll keep trying to find it. 

Will I miss her when she dies? I’ve asked myself that question hundreds of times and the answer is always the same. I’ll miss the idea of her. I’ll miss having a living parent. But, will I miss the existence that we have now? That answer is no. Of course I’ll cry, or at least I think I will. Maybe I’ve already mourned my mom and I don’t have any tears left. And really, who are the tears for? If I cry, it will probably be for me. For what I’ve lost and for what I’ve gone through. It’s tough to admit but it’s the truth.

*“Remember when the days were long and rolled beneath a deep blue sky. Didn’t have a care in the world with mommy and daddy standin’ by. But “happily ever after” fails and we’ve been poisoned by these fairy tales…”


*Henley, Don. “The End of the Innocence.” The End of the Innocence.

Everything I need to know about dementia I learned in...

If only there were such a book, class, tome, video. Wrap it up, I’ll take it.

I can tell you what I’ve learned about dementia through how it’s affected my mom and me since that’s the purpose of all of these words. I can tell you how she’s changed; the things that would have started World War III such as touching her hair (dad and I both knew to NEVER touch her hair), her clothes, her shoes, her jewelry...she couldn't care less about that stuff now. Don’t get me wrong - she loves to get her hair and nails done but that’s where it stops. Her hair doesn’t get combed after her weekly appointment unless I do it. She just doesn’t see it anymore. She wears the same thing every day unless I help her change clothes or she has to change clothes where, just a few years ago, there were at least three wardrobe changes a day without fail.

But, what has dementia actually done to her? I don’t really know. I don’t know what she thinks or how she feels. I know when she’s happy or when she’s concerned or when she feels I’ve been critical of her - it’s easy to see. But what she thinks, that’s the real mystery. You and I, we think about things we need to do, work, that awkward moment yesterday (or ten years ago), conversations we’ve had. Mom, I think, is driven by the “now” much like an infant would be. She seeks out company, wants to be comfortable, wants to eat when she’s hungry, drink when she’s thirsty, and take care of bathroom needs. That’s about it.

I was telling a dear friend of mine that being around mom is like hanging with a 79-year-old conspiracy theorist with the operating capacity of a mentally challenged three-year-old. I add in “mentally challenged” because, unlike a three-year-old (or at least the ones I had), she can’t be bribed. I can’t change her behavior by promising her anything that’s more than a couple of minutes out since she’ll forget. The conspiracy theorist part I have to chuckle at; whenever I stop by and find her talking with one of her friends it’s always something along the lines of “we’ll have to keep a watch on things”, “there are things happening that we don’t feel too good about”, or “ we can’t talk to ____ because she’s just not all there”. When I ask her what’s happening or what she needs to watch, she can’t tell me. She just smiles and says something like, “well, you know how it is”. Yep, I do (not).

The books and blogs I’ve read and the videos I’ve watched have been helpful in that they explain certain behaviors and how to address and deal with them. But there is no solid progression here, there’s no answer to “why”. Whether I’m asking the universe why this had to happen, or I ask mom why she has sixty styrofoam cups in her room, the answer is: I don’t know.

I think we have a need to know we're not alone. To know that someone else is going through something similar is comforting, even if you don’t necessarily commiserate. On Easter Sunday I was up at mom’s place and ran into some of the other “kids” like me. I don’t know their names but I’ve seen them occasionally. We always do the requisite “how are you?” with the answer of “fine”, but on this day I got “lucky”, and “ok, but you know, this is hard. This is the hardest thing I’ve ever gone through and some days, well...it’s just tough”. My answer to the first one was “no kidding” and my answer to the second? Yes, it’s hard. How old is your mom? He answered that she is 92, I told him mine is 79. He asked if I had any brothers or sisters? Nope, I’m it. He replied that he has a brother on the east coast but he can’t really help so he’s essentially it, too. Looking into his eyes I could see it, that slightly pinched look that comes with being weary and responsible and yes, sad. Happy Easter.

Having a parent with Alzheimer’s or dementia or living in skilled nursing or assisted living is hard but it’s not awful. Having a sick child, being diagnosed with cancer, wondering how you’re going to pay the bills - there are worse things than what I’m dealing with. But it’s all relative, isn’t it? Yeah, I’m having a crappy day but hey, high five! It could be worse. It could be raining.*

*Young Frankenstein, Mel Brooks 1974