It's more than a job - Part 2

Would you be happy to show up to a job if you had a good chance of being physically attacked, yelled at, called names, and faced with hostile behavior? How about adding in a lack of resources, support, and staff?

I’m willing to bet that answer is no.

However, if you work in an assisted living or memory care facility that’s exactly what you could be showing up for on most days. I asked Erika* from my previous post why she chose this line of work and she told me that working in assisted living and memory care wasn’t necessarily her chosen profession but once she started she knew it was what she was meant to do - work from the heart and be helpful however she can.

Working in memory care in particular isn’t an easy job. No day or hour is ever the same even if you’re working with the same resident. What worked yesterday as a pleasant distraction can be met with resistance today. One of the more helpful things the caretakers do is to find out what is important to the resident - is it art? Caring for animals? Music? Religion? For many of the residents, their religious beliefs and hearing stories about those particular beliefs are calming. In addition, their beliefs may provide them an answer when there doesn’t seem to be one or it’s too much to try and figure out. “It was God’s will” seems to be a common response when a resident is faced with something upsetting.

It’s also important to know the right question to ask without putting the resident on the spot. Rather than say, “don’t you remember?” when asked a question that’s been answered over and over in the past, asking why they want to know may open a glimpse into their past that can provide a connection and an opportunity to share a story.

The stories they share are not always happy. One of the residents in memory care, we’ll call her June, once asked if Erika was pregnant when she most certainly was not. Rather than saying “no”, she replied with “why would you like to know?”. June exclaimed that she, too, was pregnant and was afraid to tell anyone. When asked why she was afraid, June told Erika that her husband wouldn’t be happy to hear the news and had beat her for becoming pregnant before. In fact, she had lost children as a result of the beatings. This heartbreaking reality was confirmed by June’s now adult children who had witnessed what their mom had gone through.

Can you imagine how frightened she must have been knowing that her pregnancy would soon become something she couldn’t hide and she wouldn’t be able to protect her baby? She may have never had the chance to share her fears with anyone before but, through her conversation with Erika, she was able to find some solace in the moment she was obviously reliving. Asking the right questions and being willing to listen can be a gift in the moment. The person may not remember the conversation or the time that was spent with them but the feeling of relief or happiness will stay with them.

There are times when even the best intentions can be overwhelming and it’s hard to understand the resistance when it happens. I know this has happened with my mom and it really threw me. When I first moved her here to Oklahoma I had planned to take her out to lunch at a place that she always enjoyed going to when she was visiting. I had told her I was going to be picking her up and taking her out and she was looking forward to it; however, when the day came she told me she no longer liked that restaurant and didn’t want to go out.

At the time, I really didn’t get what was going on with her and I couldn’t figure out why she didn’t want to go. I did ask and all I got was an “I just don’t want to”.  Erika has seen this same thing many, many times. Sometimes, she said, even if you’re doing something kind it’s just too much for where their emotional and mental capabilities are at the time.

The people who take care of our loved ones, whether it’s in a facility or home health, are a special breed. Especially now. The turnover rate is high, the hours can be long, and the working conditions aren’t always the best. I’d like to thank the people who show up day after day and pour their hearts into doing the best they can. I don’t know what I would do without them. 

* To protect my subject’s identity, their name and other identifying characteristics have been changed.

This is going to cost you...

Having enough money to take care of mom is one of those things that’s always in the back of my mind. Right now, we’re in a good place but as her needs increase it’s going to start getting a little tight financially. I have investments in place along with savings but there may come a day when what she needs exceeds her retirement income and I’ll have to start tapping into those accounts. Yes, that’s what they’re there for but they aren’t bottomless; of course, I’ll make it work but it still makes me nervous.

All things considered, we’re lucky that we live in a state where assisted living costs are not as expensive as some. Here’s a breakdown of the $3,948.80 we’re currently paying a month:

• Room and Board - $2,930

• Tier 2 level of care - $960

• Art council - $20

• Cable TV - $25

• Oklahoma sales tax (8.625%) - $13.80

The National Center for Assisted Living  reports that more than 800,000 Americans are now residing in assisted living facilities, and that number is growing. The average median cost for an assisted living apartment in the United States is about $3,700 per month and the majority of residents are age 85 and older. If a resident needs to live in a memory care facility, you can expect to pay $600 - $1000 more per month.

Prices can vary widely nationwide and within the same state. Alaska is one of the highest with an average monthly cost for assisted living of $6300 per month. Just for fun, I looked at the average cost for Illinois, where my mom lived before we moved her here, and it’s $4030. From where she lived, Missouri is about 15 miles away and the average monthly cost there is $2844 which is one of the lowest in the United States. That $1,186 difference is huge, especially as the costs go up as the level of care increases. I found this state to state guide on the average cost of assisted living interesting; I had no idea the cost could vary as much as it does but from all I’ve learned so far, it’s not surprising. 

When it comes to having to pay for assisted living, there are a few things to consider. Retirement, personal savings, and other assets are where the funds will most likely come from but there are some other options, a few of which I’ve listed below. Remember, your financial advisor is one of your best allies and adding in an elder law professional can’t hurt.

Long-term care insurance is an option but do your homework before purchasing one of these policies. You’ll need to make sure you can afford the premiums and understand the stipulations of the policy, such as exclusions for addiction and mental illness. Other illnesses such as heart disease or Alzheimer’s may be excluded from the policy along with certain types of cancer. Also, there is a chance you may never need the benefits of the policy and should your ability to pay the premiums stop, you’ll most likely lose coverage along with what you’ve paid in. For more information, go to AARP's page on long term care insurance.

Veterans Aid and Attendance benefits can be used by veterans who are 65 or older and their surviving spouse; if the veteran is under 65 he or she must be totally disabled to qualify. In addition, the veteran must have served at least 90 days on active duty with at least one of those days being during wartime. There is a net worth limit and an investigation into finances over the three years prior to application along with several conditions that must be met. Go to the U.S. Department of Veterans Affairs site  and the Senior Veterans Service Alliance for more information.

Life insurance. You can use your existing life insurance policy to receive benefits before death through an accelerated death benefit (ADB) in which the insurance company “buys back” the policy. This benefit may be included in the policy or may need to be purchased as a rider and the buy back percentage can vary from 25% to 100%. The ADB is usually tax exempt if life expectancy is less than two years; however, receiving this benefit may affect Medicaid and SSI eligibility. For more in depth information, go to Investopedia's  page on ADB.

Annuities purchased as an up front lump sum payment can provide regular payments to the annuitant for a predetermined amount of time which could be the rest of your life even if the amount paid in is exhausted. If it is allowed in your state, an irrevocable annuity can be helpful if you or your spouse needs assisted living and you want to qualify for Medicaid but your assets are over the maximum resource allowance. There is a lot of information to consider before taking this route and I would strongly urge you to consult your financial advisor and an elder law attorney before making any commitments. ElderLawAnswers has a page that describes using annuities as a Medicaid planning tool.

I have a piece of advice to share that I learned the hard way. If you are in charge of paying for your family member’s expenses make sure you look at the invoice every single month. I used to have an automatic draft set up so I didn’t have to worry about writing a check for mom’s care and rent every month; I usually looked at the bill when it showed up in my email just to make sure everything was as it ought to be and it always was. However, somehow I got distracted or busy and for a few months I didn’t look, I just assumed things were going along as they always had. That is, until I got an overdraft protection notice from the bank. I couldn’t imagine what had happened since, at that time, mom’s expenses were well below what she had coming in every month. I went back and looked at mom’s last few months of invoices and I couldn’t believe what I was looking at - her expenses had climbed exponentially to almost $6000 a month.

I called the business office at mom’s and we finally figured out there was some kind of glitch in whatever billing system they were using. Easy enough to fix but here’s where the horrifying part comes in; I was told that if I hadn’t caught the mistake it would have kept on happening, to the point of potentially wiping out everything mom has. No one was checking to make sure the monthly statements were accurate, they were just generated and hopefully paid. What happens to the people who have no one to advocate for them?

Mistakes don’t just happen with living expenses, they happen with medical costs, too. So far mom’s physical health is better than mine so medical billing hasn’t been a problem. I’ve had issues with my own medical bills - I can’t imagine how much money is made from people who don’t know what to look for, don’t know the laws concerning preventative care, and don’t know that it’s ok to ask a question and ask again if they believe what they’ve been told is wrong.

As we age things like taking care of ourselves and our parents, along with handling Medicare and Medicaid can start to seem like a full time job and it can be exhausting. Make sure you have trusted professionals on your side and people you can turn to who have your best interest at heart. No one should tackle this kind of stuff alone.

Logan, Mom, and Leah at Lake Hefner June 3, 2003

It's never easy

Life is messy. Some of the dilemmas we’re faced with can be so tough - it can be hard to stay true to yourself when you know some of your decisions aren’t always the most popular or are not what others would have chosen to do.

When my daughter got engaged a year and a half ago, my first reaction was absolute joy; I was not only gaining a wonderful son-in-law, I was also gaining a twelve year old grandson - both of whom I love dearly. As we began making wedding plans and putting the guest list together, I started wondering how I was going to handle mom on the day of the wedding. The more I thought about it, the more anxious I became.

From what I’d learned about mom over the last five years, if I chose to be responsible for her she would be my full time job - if I sat her down somewhere there is no way she would calmly stay there until I was able to fully concentrate on her. I thought about hiring someone to be with her the whole time and transport her to and from the venue which was an hour drive each way. That way, I could enjoy being mother of the bride and greet our guests without being distracted or worried about her. Either way, she would definitely need to have someone with her at all times, just checking on her occasionally would not work.

Or, there was another option. I could decide to not have mom there at all.

After thinking about it and talking with family and friends, that’s what I decided to do. I did talk with my daughter about it and, if it were life and death for Leah to have her grandmother there, we would have found a way. Thankfully, I have a daughter who is as reasonable as she is wonderful. I’m so grateful she understood why I was leaning towards the decision to not have mom there.

The main reason I decided to not have mom at the wedding is because of the drain it would be on me. I know to some that sounds incredibly selfish but it’s the truth. Even if I did hire a companion, mom would be looking for me, would want to be with me, and would want me to sit with her and take care of her - all very reasonable things if it had been a different situation. If mom would have been happy just to be there and enjoy the celebration I would have chosen differently but, sadly, that’s just not the case.

In the end it was a wonderful day. We talk about it often and Bill and I agree that it was one of the best days of our lives so far. There’s nothing in the world better than seeing our children happy and, ever since Leah met Jason, that’s exactly what she’s been. How could the day have been anything but perfect? What made it even more special was that Leah and Jason asked her brother, Logan, to officiate so, with his sister’s internet skills and the blessing of the state of Oklahoma, that’s exactly what he did and he was amazing. Our hearts were truly full that day.

I know if circumstances had been different and mom didn’t have dementia, she would have been there and loved every minute of it. Before she was diagnosed, she talked often about how much she was looking forward to seeing Leah as a bride someday. I did show her pictures and she loved looking at them but, even though I told her the pictures were of her granddaughter’s wedding day, she kept asking me who the bride was or if the bride was me.

For all of us, and for me, I know it was the right decision. I know mom better than anyone; I know what her limitations are and I know what mine are when it comes to her. These kinds of decisions are the reason I write about my experiences - what we’re personally able and willing to shoulder is different for everyone. There is no right or wrong when it comes to things like this; all we can do is the best we can with what we have at the moment and remember to be as kind with ourselves as we are with the people we love.

December 1, 2018. Logan, me, Jason, Leah, and Bill

Where we are

A picture of mom and me taken in 2015 popped up on Facebook the other day. It’s a great picture of her - I remember having dinner with her that night and how happy she was that we were there. Not so long ago, but just thinking about everything that’s happened since that picture was taken makes it seem more like ten years rather than four.

In April of 2015, I was still eight months away from my Bachelor’s degree; it had been a very long road but now that I was hitting the home stretch, I was loving every minute of it. I even loved Statistics because it was a challenge. A HUGE challenge. I had recently been dealing with worse things and, as long as I gave those tough classes whatever amount of time it took to get it right, I could prove to myself that I was capable of just about anything. And, at that particular time in my life, controlling the outcome of something was extremely satisfying and strangely comforting.

In April of 2015, I was still able to talk to my mom about my classes and what the family was up to and have a semi-conversation about what she was doing with her day. She was still able to remember that I was in school and she would tell me often how proud she was of me for going back. I would write on her notepad what time I would be there next and, without fail, she would be at the front door waiting for me. If I was even a few minutes late, she would call me to make sure I was still coming.

I remember getting irritated at little things she would do like the four or five calls leading up to my visits, which were at least every other day, just to confirm when I was going to be there. Sometimes there would be several calls in a row in the middle of the night telling me “there’s something going on here that I don’t like”. She could never be specific but I’m guessing what she didn’t like was the staff telling her to go back to bed since she had, and still has, a habit of wandering the halls at night. I never expressed my irritation to her but people who know me may have heard a word or two.

Four years ago, we could still talk about my dad and our memories of him, she still remembered her friends from Illinois, and we could still laugh about certain silly things that had happened in the past. Mom still asked about my children, Leah and Logan, and made sure she had birthday and Christmas cards to give them. However, even then she didn’t call my son Logan by his name; she had been calling him “grandson” rather than his name for a couple of years prior. When she started doing that I thought it was strange but, in hindsight, I think I knew what was happening - the pieces of memory that fall away are so odd, so random.

Now, four years later, mom doesn’t always know who I am but she does tell me how much she appreciates what I do for her. She no longer remembers she has grandchildren, even when I show her pictures, although she always comments and seems to enjoy looking at them. She has asked me on more than one occasion if I am married and when I tell her “yes and it’s been almost thirty-one years”, she smiles and says “good for you”. If I take her to get her nails done, she forgets what we did within minutes but she does tell me that we had a good day.

Now, we have the same conversation every time we’re together; “How are you?”, “Is everything ok at home?”, “Are you going on any trips soon?”, and “When are you going to take me out of here?” - I answer, ask her a few questions that I hope she knows the answer to, and the loop is repeated.

Mom and me April 2015

A lot has changed. She doesn’t call anymore and she stopped waiting for me at the door a long time ago. She doesn’t look the same and the light that used to be in her eyes doesn’t show up as often. But she still laughs at my stories and enjoys the occasional outing. I know it could be so much worse and I do appreciate that she’s pretty easy to deal with but, no matter how you look at it, it’s not where either of us ever wanted to be.

Is it normal aging or is it dementia?

My last post was about the ten most common conditions that can look like the onset of dementia; this time, I thought I’d talk about the ten most common warning signs of dementia. The sad part is, this disease is usually so insidious that by the time dementia is suspected and investigated, a person can be well over four years into the disease. Some of the early warning signs such as forgetfulness, loss of concentration, and withdrawal from social situations can also be the result of depression, anxiety, or stress. In many cases, these symptoms are by-products of exactly that and can be treated with medication and/or therapy.

I still don’t know exactly when things took a turn for mom. She had developed what I would call “amplified” versions of her normal personality traits over a number of years; however, I think a lot of that could have been attributed to her developing a routine and not wanting to step too far away from her comfort zone. All perfectly normal, until they’re not. Hindsight being what it is, when I read through the early signs of dementia, I could instantly apply them to mom’s behavior. Even with all that, the lines can still get blurred. What’s normal and what’s not?

Ten Early Warning Signs of Dementia

1) Memory loss that is disruptive to daily life. Forgetting a random appointment now and then has happened to all of us. Two or three times a year is perfectly normal; we get busy and things sometimes fall through the cracks. The first thing that comes to mind concerning mom is I used to call her at 10 am every Saturday morning and we’d talk for one hour - nothing more, nothing less. This was her idea since it fit into her schedule and we did it for years. Then it started changing - she would act surprised I was calling, she’d be done talking in ten minutes, or she would seem really distracted. I couldn't figure out what was going on then but, looking back, it’s most likely she wasn’t able to recall what she had done in the last week and me asking specific questions probably made her very uncomfortable.

2) Retaining recent information or solving problems becomes a challenge. Mom has always been a list maker and when she discovered Post-It Notes it was a coup for her and for 3M. However, when we went to empty her apartment I was shocked at the number of notes and lists that were everywhere, even in her car. Some of the notes were a little odd: “Car is parked on the left”, “Sue called and her husband is sick”, “Melissa has a new job”, “Saw Marjorie and she looks good”, “The movie we went to on Sunday was Jurassic Park.” A lot of them seemed to be there for her to use as a reference or a prompt for when she was having a phone conversation.

3) Difficulty performing or finishing everyday tasks at home or at work. Mom had apparently stopped cooking and using the microwave, something that she used to do on some level every day. She had also stopped driving but for how long I have no idea. One of her water aerobics friends later told me that mom had asked her to lead the way back from the gym to mom’s apartment - where mom had lived for almost thirty years.

4) Confusion with days, time, seasons, or places. Most of us have had a moment when we think it’s Sunday but it’s really Saturday as in, “I’ve been thinking it was Sunday all day.” Once we’ve clued in, what day it is usually sticks - perfectly normal. Over a short span of time before her diagnosis, I had noticed that mom was progressively forgetting important dates or events, even those she wrote down, which was very unlike her. If I mentioned it she would get irritated or change the subject so I didn’t push. Now, she doesn’t know what day or month it is, or even the season.

5) Changes in visual perception. Most of us can use steps or step down off a curb with hardly a thought. A change in gait or a hesitation where there was once none can be a sign of cognitive change or failing eyesight. Hopefully, it’s the latter. Looking back on one of mom’s last visits here, she was extremely cautious getting out of her chair and walking around the hassock - enough to where Bill and I both noticed and, at this time, she had no problem with mobility. She also insisted on nightlights in the bedroom she was sleeping in, down the hall, and in the bathroom where before, one in the hall was plenty. Not a big deal, just peculiar. Once again, we just thought her weird idiosyncrasies were just getting weirder.

6) Unusual problems with words in both speaking and writing. Having a word or a name on the tip of our tongue but not being able to come up with it happens to all of us. Losing track in the middle of a conversation, or no longer having the ability to follow verbal cues or answer simple questions can be signs of trouble. We could always tell when mom was losing interest in a conversation but when she started losing track of what we were talking about or saying something that didn’t fit we knew it wasn’t normal behavior.

7) Misplacing things and not having the ability to retrace steps to find them. This is where the all too common “someone is stealing my stuff” comes in. Mom has always had all kinds of tiny decorative boxes sitting around and she was forever placing something in one of them and then forgetting which one but, eventually, she’d remember. If she does that now it can be weeks before we find the missing thing in the back of a drawer, in the refrigerator, or in a pocket of something she rarely wears. For a while, she was convinced someone was stealing her underwear. I promised her that of all the things in her apartment her underwear was probably the least likely to get stolen. Turned out she was putting them in a cabinet - mystery solved.

8) Poor judgment. Making a bad decision every once in a while happens and, when it does, we usually own up to it and fix it. Lesson learned. A change in judgment or doing something that is so far out of character that it’s alarming is a warning that something isn’t quite right. When mom was still living on her own, I remember her telling me that she had made a friend who was a stock car driver. That struck me as strange since a stock car race track would be one of the last places you’d ever find her. She then told me that he wanted to paint her name on his car and how flattered she was. I’m sorry, what?? I asked her if they were dating and she said no. I asked her if she had been giving him money and that’s when her talking about this guy stopped dead - I’m pretty sure the answer was “yes”. It wasn’t too long after this conversation that she fell and was diagnosed with dementia. I had the opportunity to meet stock car man and creepy doesn’t even begin to describe him - he quickly figured out that I wasn’t a fan and backed off. I’ll never know if she did give him money, and really, I don’t want to know.

9) Disengaging from social activities and hobbies. This can also be a sign of depression, so it bears investigation. Mom has always loved to socialize and go out; her social schedule would have exhausted me but she thrived on it. If an event got canceled due to weather or because someone was ill she would be crushed (not an exaggeration). Also, mom had played bridge for decades and was part of a group that met once a month to play; she loved the game and was quite good at it. Then, seemingly out of the blue, she stopped. I asked her a few times what had happened but I never got an answer and the same thing happened with going out with friends. I think part of the reason she stopped going out is that if she got up to use the restroom, she would forget how to get back to her seat or get turned around. She must have been so sad and scared but she never said a thing to me, she simply blamed the weather or some other circumstance for her not going out.

10) Changes in mood or personality. Again, this behavior could also indicate depression or an issue with medication so a call to a doctor is definitely in order. In mom’s case, she always had a specific way of doing things and certain preferences that sometimes seemed extreme but we knew they were normal for her. For instance, when she went to the airport alone she would call an Airport Express type of service to drive her to and from the airport and did it this way for years, perfectly normal. Then she changed to paying a friend to drive her and pick her up. Not entirely unusual, but odd. From what I put together, I think that telling someone she didn’t know which terminal she needed, coupled with being let out where it was convenient for the driver and not necessarily for her, and then not knowing where they were parked to pick her up got to be too much. If it was a friend, she could convince them to meet her at baggage claim and not worry about getting lost. Even if she forgot who dropped her off, she could be pretty sure they would call out her name when they saw her. The energy she expended trying to be “normal” had to have been staggering.

Even if I had all of this information or had thought to look it up when mom first started to change I don’t know if I would have taken the leap to have her looked at. Dementia isn’t obvious like a cough or a rash and things don’t change all at once. And when things do change and we question what may be going on, those first interactions can be met with denial and hostility which, being forever the “child”, can silence us for a time - until things become more pronounced or dangerous or catastrophic. Sadly, early intervention is no guarantee that dementia symptoms can be slowed down and, with the decline in funded research and the current lack of promise as far as drug therapies go, those of us who are watching the people we love change can do nothing more than care for them the best we can and learn from and lean on each other.   

https://www.alz.org/alzheimers-dementia/10_signs

https://www.alzheimers.net/2014-07-16/10-early-alzheimers-warning-signs/

Looking forward

Well hello there, 2019! I hope you know this but, just in case you don’t or 2018 didn’t warn you, people have some mighty high expectations of you. For a lot of us, you are a fresh start, a reset button, or perhaps an escape hatch. You represent a chance to do better, an opportunity to make different choices, or perhaps a time to take a good hard look at what we don’t like in our lives and jettison that crap into outer space where it belongs.

We all know it’s not the year that’s going to shoulder the responsibility for us doing what we need or want to do. It’s you, it’s me, and nobody else. Either do what you’ve put your mind to or don’t; the only price you’ll pay, whichever you choose, is the words that will swirl around in your head. Words like “Holy cow, I did it!”  or words that go something like, “I can’t believe I let that happen again.” Those last ones are the ones that will haunt you. Especially at 2 am.

There are some end of the year quotes picking up steam out there and I’ve seen them more times than I can count. I know you’ve seen them, too: “A strong woman…”, “letting go…”, “walking away…”, “I refuse to take any more shit…”, “I will no longer…” - you get the idea. No matter what my feelings are on all this, if one of those quotes has spoken to you and has given you the nudge or courage you’ve been looking for then have at it; whatever it takes to propel you into a brighter future and a happier you.

The thing that always makes me cringe a little when I see those particular “strong woman” quotes is that I do consider myself to be strong. As a person, not just as a woman. And I will tell you this - no matter how strong I am, if I love and respect you I will put up with some shit, I will not walk away because of hurt feelings, and I won’t let go until there is nothing left for me to hold on to.

The way I see it, none of that makes me weak. It makes me human. For me, in being human, there are no hard lines, no black and white, no “no matter whats”. I’ve found this out the hard way or, to put it in a way that’s a bit more kind, I’ve found this out through experience and maturity. Aside from keeping my children safe, there is no way I can say with 100% certainty that I know how I will react to a situation until I am knee deep in it. I’ve surprised myself a time or two and disappointed myself far more times than that.

The thing is, the people who have hurt me - well, I’ve hurt them, too. I’ve said things I don’t mean more often than I’d like to admit, I’ve slammed down ultimatums that amounted to nothing, and I’ve closed a door only to open it over and over again. There have been times when I’ve been so ashamed of my actions that I had a hard time looking in the mirror. I have failed my children in ways that I swore I never would; I let stress, exhaustion, self-doubt, and self-pity affect the way I spoke to them - not often, but I remember and oh, how I regret it. I learned from my mistakes but, as they say, you can’t unring a bell that’s already been rung.

I’m writing this as a way of reminding myself (and you, if you’d like) to look at the new year as a time to look forward, keep learning, apply what I’ve already learned, trust in my abilities a little more, and be grateful for every opportunity I am given to show the people in my life just how much they mean to me. It’s time to cut the new year, and me, some slack.

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. 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

The envelope, please...

I love science.  For Christmas this year, I asked for a telescope and I received a very cool one that I don’t have to squint my eye to use plus it tracks the planets as the earth rotates. I haven’t used it much because of how darn cold it’s been but as soon as the weather straightens up, just try to get me to come inside on a clear night.

The science of DNA and genetics has always interested me as well. A couple of years ago Bill gave me a 23andMe Genetic Testing and Analysis kit for my birthday. I love this kind of stuff - being able to take college biology in my forties made me a very happy girl. It took me a stupid amount of time to find my slide sample in the microscope but when I finally did, heaven. I was even able to make e.coli glow and not botch it up - pretty simple experiment but if anyone can make it come out a little odd, it’s me. My professor seemed to be amused by my backward way of doing things (I’m left handed so I have a permanent pass); I can still hear him announce, “Mrs. Geiser! How can I assist you today?” almost every time I set up lab space. I would take that class again if I could.

Anyhow, back to 23andMe. The ancestry part was interesting, no real surprises. I’m mostly Northwestern European; British, Irish, French, German, and Scandinavian. The part that really tickled me though, was that out of the over 1,100 people on the site that I’m related to, I’m in fourth place for having the most Neanderthal variants (there has to be a competitive gene in there somewhere). With 293 variants, I have more than 74% of all 23andMe customers and I have my Neanderthal relatives to thank for my height. Fascinating.

Stick with me, I’m getting to the point of all this.

The site also tests your DNA for carrier status and genetic health risks if you want them to. As more tests are done on my sample, I will occasionally get a notice that I have a new health report. For almost all the tests they have run on my DNA, I’m not a carrier nor do I have a gene associated with a genetic disease, like Parkinson’s. I say “almost” because I do have a genetic variant for age-related macular degeneration which is good to know. I told my ophthalmologist, he noted it in my records, and suggested some supplements to take. No big deal.

A few months ago, I received an email from 23andMe that there was a new health report in my records. I opened it and it, and after a few “disclaimers” and “are you sure you want to know?” windows I got to the report stating that I have the e4 version, or allele, of the APOE gene which is associated with late-onset Alzheimer’s Disease. I only have one, not two, so my genetic risk isn’t as high as it could be but I’d really rather not have any at all. The quickie stats* for females with one copy of the APOE e4 variant are as follows:

                                   Age 65                                         less than 1% chance 

                                  Age 75                                          5% to 7%

                                  Age 85                                         27% to 30%

                                  No APOE e4 variant                    6% to 10%

                                 General population of women     less than 1% to 14%

*this information was compiled by 23andMe

So now I need to sort out how I feel about this. I could take a glass half full approach and be happy that there is about a 70% chance that this little gene stays asleep and I skate through my 80s with my memory intact. If I had never been exposed to someone with dementia or Alzheimer’s (at this point, maybe mom has Alzheimer’s - either way that ship has sailed) I think I would have read the report and thought, well shoot, that kind of sucks and moved on. From where I’m looking at it, the glass is most definitely half empty and it more than sucks; it terrifies me. Not in a paralyzing, I can’t move on with my life, it’s all I think about way. It’s more like a little tic tac time bomb has been implanted in my brain and I can hear that bad boy ticking away. The ticking is very quiet and may not ever mean a thing, but it’s still there.

I did some reading about the gene and looked into what I could do to help myself: eat well, exercise regularly, and never stop learning and challenging my body and brain. Check, check, and check. Through my reading, I ran across some sobering facts at the Alzheimer's Association website. Did you know that deaths from heart disease have decreased by 14% since 2000? That’s great news. Did you know that since 2000, deaths from Alzheimer’s have increased by 89%? Well, hell. And there’s the movie Still Alice with Julianne Moore. That gave me something to think about. A lot of something. There’s so much information out there and so much to learn about Alzheimer’s; however, the more I read the further down the rabbit hole I found myself going so I had to put it aside.

There’s always a chance that being with mom is the closest I’ll come to dementia or Alzheimer’s. Plus, there are so many positive, wonderful things I have to look forward to - I’m not going to let something I have minimal control over muddy things up. And really, who’s to say I won’t get taken out by some wayward pelican on one of my walks by the lake? Or have my number come up on the Northwest Expressway? I’ve been in a wreck there, believe me, I know all too well it could happen in the blink of an eye. None of us are guaranteed tomorrow or even the rest of today so I’ll be grateful for what I have right now and keep doing what I’m doing the best way I know how.

In hindsight, would I still want to know? I can say with 100% certainty I would. Mostly because I would take my own advice. For example: Whenever my son took a test or a final while he was at OU, I’d ask him how he did - he’d tell me how he felt he did, but he refused to check his grade online until I threatened to check it myself. It was as if the act of checking it somehow made it gather up molecules and become real. For a kid who usually uses logic as a weapon, this behavior made zero sense to me. Whether you know the outcome or not, it’s still there. It exists. And you may have time to do something about it.

"Fear keeps us focused on the past or worried about the future. If we can acknowledge our fear, we can realize that right now we are okay. Right now, today, we are still alive, and our bodies are working marvelously. Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones." - Thich Nhat Hanh

Nothing stays the same

No matter what fate chooses to play, there's nothing you can do about it anyway -                          Jackson Browne, For a Dancer

Mom has always written reminder notes to herself, they were all over her apartment when we moved her out. Because this is what she’s used to, she asks me to write down when I’ll be there next on the notebook by her phone. The notes are simple: “Melissa will be here on Thursday at 12:00 to pick you up for Thanksgiving” followed by my phone number. Or, “Melissa will be here on Wednesday at 1:00 to pick you up for your manicure/pedicure appointment. Bring flip flops”.

But for the past few months, she doesn’t remember to read the notes I leave and every time I show up it’s a “surprise”. This Thanksgiving she called me in the morning and said she needed to know “what’s going on” with a concerned tone to her voice. I told her I was going to be picking her up for Thanksgiving and asked if she still had the note I had left by the phone. She did, and she read it back to me. The thing is, before she called me, she had to look at the note to find my number; I just can’t understand the disconnect between her wondering what she’s going to be doing, looking at some words, and making her way to the bottom of the note for my number. I know there’s no “understanding” what’s happening to her, but that doesn’t stop me from trying to figure it out.

I know why she doesn’t “see” things like notes the way you or I would, I know she can’t help it, but it irritates the hell out of me sometimes. Every time she is “surprised” to see me I have to remind myself to not tell her that no, it isn’t a surprise, I wrote it down. Why continue to write down anything if she’s not going to read it?? I know the answer: it’s because, in some small way, that note by the phone is comforting to her even if the thought process to use the information on the note is broken. It still irks me even though I know the hows and the whys. Mother Theresa would be appalled.

Back to Thanksgiving. An hour after the first phone call, she called back which is normal for her; once she recognizes her schedule is going to be different she gets a little anxious. I explained again that I would be picking her up at noon, etc., and she said she was looking forward to it.

When I got to her place, I headed for the common area where she hangs out. I knew they were going to be serving lunch around that time so I expected her to be at her table with her friends. I was right, she was there - eating. And, when the aides saw me they all started saying things like, “look, Pat, there’s your daughter. We told you she’d be here”. She had obviously been concerned or feeling sad, although I’ve never not been there when I said I would be. I hugged her shoulders and she looked right through me - she had no idea who I was, even when I asked her if she’d like to come to my house for Thanksgiving. I think she sort of recognized me after I spoke, and the aides and her friends identifying me as her daughter probably helped her put it together.

We got to the house and I finished getting dinner ready. I poured her a glass of wine, we took a few pictures and then ate. She pushed the food around her plate, ate a couple of dinner rolls and waited for dessert. While we were eating, the kids decided to have a bit of fun with grandma and tell her that they weren’t the only children I had, there were more. Five more. I don’t know what got them started but Bill joined in and told her that he had other children as well, all over the world - most of them he hasn’t had a chance to meet yet. None of it is true, at least as far as I’m concerned, but she seemed tickled by the idea that she had a bunch of grandchildren. Then Leah or Logan told her that I had just had a baby but it wasn’t here, I laughed and said I gave it away because it was too loud. Mom’s answer to that was “Well, sweetie, you look really great for just having had a baby!”. I reminded her that I’m 52, a little past my baby hatching days, and she replied that I was holding up well. Mercy.

Some people may think it’s a little mean to tell stories like that to my mom but it seemed to entertain her and keep her engaged. My kids can ramp it up in no time and have everyone going in a good way - I think it was just what she needed. She was laughing and joining in and that’s way better than watching her push a spoon around waiting for ice cream. Besides, she’s not going to remember any of it anyway.

When she was done with dessert she said she was ready to go back to her room. I grabbed my purse and started heading for the garage and she asked where I was going. Um...to the car so that I can take you home? She got a confused look on her face and said, “I live here, don’t I?”. Ah, so this was new. I told her no, she had her own place not far from here and I pick her up and take her back. She still wasn’t getting it, I hadn’t seen her look that confused for a long time. I explained that once we got in the car and started driving she’d recognize what she was looking at. I don’t think she believed me but she got in the car anyhow.

We started driving and she started her usual chatter, remarking about the weather, asking how I was doing, how the kids were doing, did we have any trips planned, and how are the dogs. It’s a fairly tight script that she follows every time we’re together. I answered her like I always do but I did show her the pictures we had just taken of her and the kids and me. She asked when the pictures were taken. She had already forgotten and we were not even 10 minutes into the drive. She started running down the script again and I started answering her questions again but this time, I left out the pictures.

She seems to be doing well, she’s happy and doesn’t complain and she has friends who are always around her. The way her dementia affects me, however, seems to be changing. I know that there’s no recovery from this and I know that it’s only going to get worse; I’ve resigned myself to those facts. And I’m ok with her not recognizing me right away; I knew it was going to happen and it’s not going to get better. But lately when I’m going to see her, after I leave, and now pretty much all the time, there’s a new heaviness in how I feel. I’m trying to figure out just where it’s coming from in regards to mom because that’s what I do - I look for patterns in everything and try and put the pieces together in some way that makes sense to me. Once I do that, and the “thing” is figured out, I can put it on my mental shelf and move on.

But this is a whole different animal. There are no connections to be made, and even if something seems to fit one day, the next day or week it doesn’t. And it’s mildly unsettling - I think that’s the best way to describe it. I see the other “kids” of the residents and I recognize the look, I think we all have it. The half smile, the concerned and tired eyes, the yep, you’re going through this too and I get how you feel and it really sucks sometimes expression. So here we are, in our own special group. The membership dues to this exclusive group, though... man, they are a killer.

One slip and down the hole we fall

“There I was, cold, isolated and desperate for something I knew I couldn’t have. A solution. A remedy. Anything.” – Brian Krans, A Constant Suicide

You’ve had them. Someone shows up at your front door with some kind of awful news, or you get a phone call you just can’t wrap your head around, or some diagnosis you didn’t see coming. Those are the moments that change the way the air feels in the room and makes the sides of your vision go dark.  I’ve had them, too.

The week before spring break and her 75th birthday one of her friends called me. Mom had fallen down the outside stairs of her apartment and had been taken to the hospital. Shit. I called the hospital and was connected to her room. When she answered the phone she sounded different, like hearing someone speak through a tube, and eerily detached. I asked her what had happened and she said she couldn’t remember but her knee was bandaged and it hurt. I asked her if there was a nurse or someone I could speak with and as luck would have it, or not, there was. The nurse said I would have to talk with the doctor, and I asked if she could have him call me with mom’s permission. She replied that wasn’t possible. Okay, what exactly am I supposed to do? I have no idea how bad this is, I’m not sure why my mom sounds weird, and because I was in a degree program with 8 week semesters, I was in the middle of finals. My frustration level was red lining.

She was assigned a caseworker who contacted me the next day. They were planning to discharge her to a skilled nursing facility the next morning. A hundred questions including the most important one…what exactly is wrong? She couldn’t tell me. Then she dropped the bomb. It turns out that Medicare will pay in full for skilled nursing for 20 days. However, and this is one devil of a however, the patient must have been in the hospital for 3 midnights; 3 days and discharged on the fourth. Mom had only made it to 2 midnights and her doctor was fast tracking her right out of the hospital to a facility that would ultimately charge over $6000 for 6 weeks of care. I’d love to know what his motivation was. I’d also love 10 minutes of his precious time. I have a few things I’d like to say.

I finished my finals early and we headed back to Illinois. In the meantime, mom’s friends had been keeping me updated on how she was doing and she was hardly ever alone. Everyone seemed confused as to what was happening to her and I still hadn’t spoken with anyone who could tell me definitively what was happening with her medically. We arrived the day before her 75th birthday and drove straight to the nursing home. It looked nice enough and the people that worked there seemed helpful. They directed us down a long hall and through some code protected double doors. When the doors opened, the smell of urine hit us HARD and there were people parked in wheelchairs everywhere. I had never seen or smelled anything like this.

When we got to mom’s room she was dressed and sitting up on the bed. Her knee was bandaged and she looked so small. 40 pounds gone in 3 months. She used to wash her hair every day and color it every 4 weeks but now her hair was dirty and almost all white. Her nails that she was so meticulous about were overgrown and broken. I didn’t even know where to start. I went over and hugged her; she seemed happy to see us but very confused. She complained a little about her knee but said she didn’t mind being in the wheelchair they had given her. A couple of her closest friends arrived and we made some small talk but I could tell that mom wasn’t following the conversation well at all. I also noticed that there was an obscene amount of chocolate candy in mom’s room. It looked like Easter and Valentine’s Day had made their yearly deposit of crap right there. It was in every corner, every drawer, and even in the small closet they provided. It was the only thing she was interested in eating.

I found her purse and made sure to get her identification and credit cards out of her wallet. Then I asked for her keys. She was reluctant to give them to me but I explained that she wasn’t going to be driving anytime soon and I wanted to make sure her apartment was taken care of and all her things were safe. We finally tracked down a doctor who told us that her x-rays showed a chipped kneecap but it would heal on its own and didn’t need surgery. Great. Then we got the news we knew was coming but didn’t want to hear. Mom had dementia and I needed to get power of attorney as soon as possible so I could start taking care of her and her needs. Wow. I know I shouldn’t have been shocked, we had talked about this, but now it was real.

One of mom’s closest friends is the ultimate take-charge kind of woman. She is also the one person who can almost make me believe in divine intervention. She told Bill and me that her brother was a local attorney and she had told him to start getting ready in case we should need him. I didn’t take her very seriously at first - I didn’t want to seem as though I was taking advantage and I had no idea what I was getting into. But, after speaking with the attorney at Scott Air Force Base and ending up in tears, I knew I needed help and asked her to go ahead and contact her brother.  

He met with us and said he would take care of the paperwork and meet us at the nursing home the following day with it all ready to be signed. Not only that, but he would be bringing his assistant and a notary public so that it could be done on the spot. He told me that as long as mom knew her name, her birthdate, what year it was, and who I was that there would be no problem. However, she had to agree and indicate throughout the process that she understood I would be taking control of everything that was hers. I have never been so nervous and scared as I was leading up to getting all of that signed. Mom was on board, agreeable, and visibly relieved.

Xanax now had another super-duper valid reason for existing in my life. If it wasn’t for Bill, medication, adult beverages, my mom’s friends, and the attorney I would have come completely unhinged. I was damn close to it anyhow. When the security guard in a Target parking lot starts paying extra special attention to you while you’re sobbing and hysterical (yes, that bad) in your car you know you’ve turned a corner. I’d say that I’m a strong person but even the strongest have their breaking point. I know where that is now.

Mom and me on her 75th birthday