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

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.

In the beginning

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

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

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

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

Also…

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

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

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

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

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

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

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

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

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