It'll get better soon

In our lifetimes, most of us will gain some wisdom along the way. Some of it we learn from watching others, and some of the toughest lessons we learn are from our own mistakes. We also learn by doing a few things right, whether by happy accident or really thinking things through. Either way, if we look close enough, there’s most likely a lesson in there somewhere. However, sometimes we need some help knowing where to look.

As enlightened as I’d like to think I am (75%, maybe?), I am far better at listening to other people than I am at listening to myself. One of the hardest things for me to do is to admit to myself that I’m not as strong as I’d like to think and, even harder, admitting to someone else that I need help.

The past seven years have been hard, physically and emotionally. Yes, I know it could always be worse and, all in all, my life is pretty great - but it’s all relative, isn’t it? Health wise, it’s been a roller coaster; I used to pride myself on being physically strong - there was nothing I couldn’t do. I didn’t do all the things I tried well, but I had the capacity to give anything a go. Now, I have to be careful and my body reminds me when I push too far. That doesn’t mean I won’t keep trying, I just can’t cowboy my way through things like I used to. Dammit.

And then there’s this dementia thing with my mom. I keep thinking I’ll hit my stride with the emotional side of all this but I haven’t yet and we’re almost ten years into it. Dementia doesn’t follow a clear path, there is no recovery, there are no real goodbyes, and there isn’t even a steady decline; some days are better than others but I know it only gets worse from here.

Just thinking about going to see mom has started giving me anxiety like I’ve never had before - shaky hands, a feeling like someone is standing on my chest, distraction, and a general feeling of “I can’t do this”. So I decided to take a deep breath and mention it to my doctor last week. She’s known me for years and my visits with her are usually a quick check in every three months and I’m on my way. Not this time. When she asked how I was doing, I felt tears coming and I couldn’t pull them back. This time, I was brave enough to tell her I was not ok.

She has patients who have dementia and patients who are children of parents with dementia and she had a father-in-law with dementia so I felt pretty sure she would know exactly where I was coming from. And she did. She knows I eat well, exercise, try to get enough rest, and all the other things I’m supposed to do to take care of me so there was no need to discuss all that. 

What she did tell me is that I could be looking at another five to fifteen years of this and mom’s condition will only get worse. Logically I know that but to hear it out loud from my doctor really hit me. Cue even more tears - awesome. I told her I was worried that my dread of that part of my future would affect my family and she leaned forward in her chair, narrowed her eyes, and told me to “just stop”. Wait, what?? She then said that my family would be just fine, I’m the one who will not be fine if I don’t get the support I need. 

Good point. Doctor = 1, Melissa = 0

So, for now I’m going to try the counselor route and see if she can give me some tricks to use. I really hope something works because I hate feeling this way. I know I’m not alone but being in this position is lonely; not because I don’t have people who care about me and who will listen to me talk as long as I want but because it’s the nature of the disease. It’s terrible for the person with the disease and it’s terrible for those who love them. Sometimes I get frustrated and angry (never at her, just the situation) and it’s hard to say things like that out loud. But we have to talk about the bad things and ask for help if we need it because there are no gold stars handed out for suffering. Funny, that’s something I say to others all the time but now it’s my turn to listen.

...And I hate to make this all about me

But who am I supposed to talk to?

What am I supposed to do

If there's no you?

This won't go back to normal, if it ever was

It's been years of hoping, and I keep saying it because

'Cause I have to

Swift, Taylor. (2019). Soon You’ll Get Better. On Lover. Republic Records.

Mom and Leah on Mother’s Day, 1992

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

What if my number comes up early?

Sometimes when I need a break from my personal feelings, experiences, and thoughts I turn to processes and facts. As a result, this is Part 3 of my very unplanned three part series of “Things Your Mother Never Told You About Dementia”. Or “Deep (Moderate) Dive Into Dementia”. Or, “Dementia: Facts From the Internet Mixed With My Observations”. Your choice.

No matter what my 15 year old self thought, sixty-five is NOT old. In fact, many of us Baby Boomers (born 1946-1964) And Generation Xers (born 1965-1976) are nowhere near ready to retire and are definitely an integral and valued part of the workforce. Maybe you’re finally able to pursue the type of work YOU want to do or you’re interested in exploring other opportunities to begin your next chapter of life. Either way, we’re far from ready to call it a day. However, what if you are diagnosed with early onset Alzheimer’s or any other terminal disease? According to the Mayo Clinic's page on early onset Alzheimer's, “of all the people who have Alzheimer's disease, about 5 percent develop symptoms before age 65. So, if 4 million Americans have Alzheimer's, at least 200,000 people have the early-onset form of the disease”. In addition, “most people with early-onset Alzheimer’s develop symptoms of the disease in their 40s and 50s”. A diagnosis at any age is terrible, but for it to start at an age where you’re just hitting your stride is, in my imagination, devastating.

In just thinking about it, I can’t begin to imagine what that would be like knowing there is no cure and no hope for remission. It would simply and horribly be a new reality filled with care plans, specialists, and dread for what is to come, especially since I’ve seen it first hand. I’m not saying that everything joyful would come to an end, far from it. In fact, I’ve found that when faced with a future I didn’t plan I tend to appreciate the moments of calm and happiness a little more. Even so, I’m guessing that what is to come would always be in the back of my mind.

If you are younger than 65 and are having some symptoms that you and your family find worrisome and dementia is the cause, it could easily be years before you get the correct diagnosis. Most health care providers don’t necessarily look for dementia in someone that young; in addition, dementia isn’t easy to diagnose, especially when it is most likely far down on the list of possible issues, syndromes, or diseases. As I’ve written in a previous blog post, the early signs of dementia could easily be mistaken for symptoms of depression, stress, menopause, or anxiety all of which are fairly common in those of us in middle-age.

Let’s say, for instance, Tom is 55, employed, and is diagnosed with early onset dementia. If he has worked a certain amount of time and has paid social security taxes then he would be eligible for Social Security Disability Insurance benefits, or SSDI. But it’s not that easy.  At 55, Tom may still have minor children at home, a mortgage, and all the costs that come along with middle age. If he is unable to work and he and his wife are relying on a second income, or he is the main income earner and he and his family are insured through his employer, day to day life has the potential to get very stressful and very expensive very fast.

Usually, to collect SSDI, a person must wait five months after the determination of disability before collecting benefits in the sixth month. This is to ensure that it is indeed a long term disability rather than a short term one. However, there is a list of disabilities, including early onset Alzheimer’s, that qualify for expedited consideration which is called a "Compassionate Allowance", meaning approval can be as early as ten days. In reality the process can still take months; many times these patient’s applications are initially denied benefits but then approved on appeal. It’s not an easy process to begin with and added to the stress of a life-changing diagnosis it can make the hurdle seem insurmountable unless you know where to ask for help. It’s understandable how people can fall through the cracks and never complete or even start the process to begin with.

A quick explanation of SSDI along with a checklist to make sure you have what you need to apply for SSDI can be found at The Alzheimer's Association's  website. Included in the checklist are links to specific pages within Social Security’s website including this one on applying for disability along with online forms and links to your local Social Security office.

After a diagnosis there are a few other things to look into in addition to SSDI; there may be some kind of employer sponsored disability insurance available, the Family and Medical Leave Act (FMLA) could provide up to twelve weeks unpaid leave with continued medical insurance coverage, COBRA, Medicare (available for those with early onset Alzheimer’s under the age of 65 who have received SSDI benefits for 24 months), and retirement benefits (consult a certified financial planner to ensure you don’t take bigger tax hit than necessary). I’ll leave it at that since I am nowhere near an expert but would be remiss if I didn’t at least mention additional options.

I hope that none of us is ever faced with this or any other terminal disease but the odds are against that. We are our own best advocates; remember to take care of yourself and never stop learning, asking questions, and treating yourself as well as you treat those you love. Your health and your presence is the best gift you can give them.

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