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

Mom and Leah on Mother’s Day, 1992

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

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

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; 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

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.

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.

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.

What if it's something else?

If I started becoming confused about where I was, or where I parked the car, or how to get to a place I’ve been to a hundred times before, I know exactly where my mind would go - straight into panic mode. What if my family bought into the symptoms as an indicator of Alzheimer’s or my doctor didn’t investigate further due to that troublesome little gene I have? I’m really hoping they’d give me a chance and run further tests, or that I’d be cognizant enough to ask, but how many people have a disease or condition that looks like dementia but really isn’t and it goes undiagnosed?

There are several conditions that can mimic the beginnings of Alzheimer’s Disease or dementia. It doesn’t apply in my mom’s case, but I wonder how many seniors have undiagnosed conditions that have tragically altered their remaining years? For instance, I know how important nutrition is, especially for seniors, and poor nutrition or a condition that makes it difficult for the body to utilize certain nutrients can have a severe effect on mental cognition. Specifically, a deficiency in vitamin B12 can cause a certain type of anemia whose symptoms include mental slowness, irritability, and confusion. In addition, other vitamin deficiencies, most commonly vitamins B1 and B6, can mimic the symptoms of dementia. A deficiency in niacin or folic acid can also be the cause but it isn’t quite as common.

Those are just the first two of the ten most common conditions whose symptoms can look like the onset of dementia. As an aside, for the sake of simplicity, I’m going to use the term “dementia” since there are many forms of dementia and Alzheimer’s is just one of them. Here are the other eight  conditions:

3). Medication side effects. As we age, our liver and kidneys don’t function as well as they used to and certain drugs can build up to toxic levels which can cause symptoms that look like dementia. A review of all medications with one doctor would be a good place to start if a change in behavior is noticed, especially since as we age we get the fun of having specialized physicians for different conditions and sometimes wires get crossed or medications aren’t from the same pharmacy and interactions aren’t quite as easy to catch.

4). Depression. I can tell you first hand that depression can be insidious, it’s not usually the first thing you think is wrong when the symptoms begin showing up. All of us have experienced being forgetful, mental fogginess, lack of focus, and feeling out of sorts on occasion; however, when these feelings persist over time, perhaps for months, the first thought may be that something is really wrong, that perhaps you’re ill. Or, in the case of seniors, they may believe they're showing the first signs of dementia. If someone already has that fear in the back of their mind, you can understand how scared they would be to ask for help.

5). Thyroid. If there is too much or not enough thyroid output, the resulting symptoms can look like the onset of dementia.

6). A subdural hematoma. This is most likely caused by a fall that results in a buildup of pressure due to the collection of blood between the outer tissues of the brain and the brain itself and can be life threatening. Large ones may be able to be drained surgically while small ones may go away on their own. Any head injury, especially one in which there was a loss of consciousness, even for a second, deserves a closer look by a medical professional.

7). Normal Pressure Hydrocephalus (NPH). NPH is caused by the gradual buildup of brain fluid which causes pressure that can damage brain tissue. One of the first symptoms of NPH is a change in how a person walks; once they get started from a standing position, it looks almost as if their feet are stuck to the ground. Other symptoms include delirium and confusion.

8). Urinary Tract Infection (UTI). Seniors may not have the typical pain and fever symptoms of a UTI. They may, however, have sudden memory problems, confusion, dizziness, agitation, or hallucinations though it’s most likely these symptoms will occur in someone who already has dementia.

9). Brain tumor. Brain tumors are no joking matter but there have been days where I just know something must be going on to make me so disjointed. Alas, and thankfully, there is nothing to blame but me. In reality, meningiomas are a certain type of brain tumor that can cause cognitive changes, changes in personality, and changes in vision and hearing that may be mistaken for dementia. Being female seems to increase the risk of developing this type of tumor

10). Vascular dementia. When brain cells are damaged by a stroke or disease, cognitive impairment, trouble concentrating, and mood swings may be the result. It’s difficult to tell the difference between this and the beginning of Alzheimer’s; however, when these changes occur suddenly the cause could be a stroke or a series of small strokes that have gone unnoticed. Treatment of the cause of the stroke is the best way to keep the dementia symptoms from increasing and cognitive therapy such as brain exercises can help. Unlike Alzheimer’s, whose life expectancy is eight to 10 years or more, death is much more likely to occur within 5 years of the onset of vascular dementia symptoms, most likely due to a heart attack or stroke.

These are only some of the most common conditions that can mimic dementia symptoms - there are many more that are less common but still worth looking into. Any change in personality or ability to retain information, especially if your family members are concerned, should be addressed by a doctor as soon as it’s noticed. Not being able to remember the name of an acquaintance, occasionally forgetting events, or having to search for a word is normal. Not recognizing family members or very recent events is not.

I know of only one person who was suspected of maybe having dementia but due to his wife’s diligence and her nursing degree, she got him in to see specialists who later were able to diagnose his symptoms as being the result of a vitamin deficiency due to a medical condition. I remember when she told me he was having issues - my heart hurt for her and her husband. I also remember when she told me he was going to be ok - I still rejoice whenever I see pictures of them enjoying their grandchildren or having a night out. That small glimpse into what they could have lost and what they were feeling was so frightening and I’m so glad there was a happy ending to that chapter of their lives.

8 Treatable Conditions That Can Be Mistaken for Alzheimer's Disease

9 Treatable Conditions That Mimic Alzheimer's Disease

Mom and Dad before I came into the picture

Mom and Dad before I came into the picture

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.

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.