A new normal

She said “I love you” back to me.

Granted, it could have been the peanut butter cookie and the diet cola I brought to her but, after more than a year, it was so nice to hear. 

Mom recently moved to memory care and it’s been a hard transition. Not for her, she’s settling in beautifully. She’s been making crafts, potting plants, and getting some quality snacking done all of which makes her happy - I’m the one who has struggled with this decision for months. 

Most of my concern came from the first time she was in memory care; it wasn’t the right place for her at the time, but I had no way of knowing that since she had been living in Illinois and I had only seen her a couple of times since her diagnosis. And, when I had visited her there, she was so much worse than she was once she got settled in here. If her symptoms had remained the same, then memory care would definitely have been the best fit from the beginning. However, once she moved into assisted living and was getting adequate food, care, and socialization she improved exponentially; she knew me, we could talk about the past and what had happened that day, and she could call me if she needed anything. Those abilities gradually diminished but for at least the first five years things were as good as they could be.

 During the course of the pandemic visits have been extremely limited and I’m grateful for that, keeping her safe was our main focus. I know the isolation didn’t do her any favors other than the most important thing which was to keep her from getting sick. The worst of it was that she lost her best friend, Phyllis, nine months ago. Wherever one was, the other was not far behind and I was so pleased mom had a friend she could be with. Sadly, I didn’t find out about Phyllis’ death until a few weeks ago and I think that’s the thing that really broke my heart.

 Communication during the pandemic had been spotty at best. I wasn’t happy with the lack of it but not being told my mom’s best friend had died made the protective mama bear in me angry. Furious may be a better word. I didn’t need to know any of the details surrounding Phyllis’ death, but I could have done little things to let mom know someone cared that her friend was gone. At the very least it would have made me feel like I was doing something for her, but I wasn’t given the chance. Thankfully, management has changed and is much better but that doesn’t change the past. No wonder she was wandering more and going into other residents’ rooms – she was looking for her friend.

 Along with her need for more specialized care, it's her wandering around at all hours and going into residents’ rooms that made the move to memory care necessary. There is little to no chance she would open a door and walk out but it could happen, and the risk just isn’t worth it anymore.

Now that I can visit and, most importantly to me, hug her again my heart and mind feel better. She likes her room, she seems calm, and she’s clean and well cared for. She doesn’t know who I am but she’s as well-mannered as always and never fails to introduce herself and ask me what my name is. Perhaps it’s just her good manners kicking in prompting her to tell me she loves me when I say it to her, or maybe she’s feeling some genuine affection. Whatever it is, I’ll take it.

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Home

What makes where you live more than a shelter or a place to put your belongings - or your “stuff” as George Carlin once spoke so eloquently about? What makes it a home? What makes it so hard to leave when it becomes obvious that a person can no longer stay? There has to be more to it than a fear of the unknown or not wanting to go through what it takes to move - even though I know we can all agree that moving is basement level on the fun scale.

I had so many discussions with mom trying to convince her to move from her third floor apartment to a lower floor. The winters in Illinois are long and not stair-user friendly; she often told me how worried she was that she would slip and fall on some ice that the salt hadn’t reached. She knew how dangerous it was, she was worried about it, and yet she refused to even entertain the idea of moving. And some of the reasons she gave me? I could not roll my eyes hard enough (on the inside, of course, because that would definitely get me nowhere).

Why on earth was she so stubborn??

I know I’m far from alone in wondering what in the world is going through our parents' heads when they won’t listen to an idea that, to us, makes so much sense and is safer and easier and one hundred other things I could list. Let’s face it - what happens to our parents not only happens to them, it happens to us as well. We want them to be okay; we don’t want them to be hurt or scared or alone and when we get that phone call it can be one of the most frightening and helpless feelings in the world.

I get it. When it comes to where our parents live, it’s hard to think of leaving what they’re used to. Maybe they’ll even have to leave their friends and the city, town, or state where they’ve spent a large part of their lives. Routines and familiar places are the things that make us feel centered and comfortable. But when it becomes increasingly obvious that something has to change due to a risk of well-being or health, why is it so hard to leave?

I didn’t have a good answer until I watched a certain reality show.

COVID-19 has changed a lot of things. In the early days, when everything seemed wrong and uncertain we, and almost everyone else in the world, started exploring Netflix. We don’t usually watch reality shows but we came across one called “Win the Wilderness” and, since we had nowhere to go and nothing else we wanted to do, we took a look.

Let’s see if I can give you a quick overview: In 1986 Duane Ose took advantage of the Homestead Act of 1862 which was signed into law by Abraham Lincoln and remained active for one hundred twenty-four years until it was repealed in 1976. However, luckily for Duane, homesteading was still allowed in Alaska until 1986.

Duane found a plot of land located fifteen miles outside of Denali Park and over one hundred miles from the nearest road and named it Ose Mountain. Not too long after, he met his wife Rena and for the next thirty years they cut logs, cleared land, and built their home together. 

Living off the grid worked well for the couple until they started having health issues in their seventies -  the Alaska wilderness was getting to be too difficult for them to live in much longer. Since their respective children were unable to take over and keep the home in the family, the Oses took an offer to be the subject of a reality show whose main objective was to find the next owners of their home.

Over the six episodes of the show, we got to know Duane and Rena and see  just how much their home and the life they built together meant to them. They were just as you’d expect - no nonsense, hard working, and resourceful. As they warmed up to the camera we caught little glimpses of their shared humor as well as their deep love for each other and the life they had built together. As they did the final walk through of their home and walked out through their door for the last time, I felt a heaviness in my heart for them. Yes, they knew it was time to go but this was their home and this home was their story - just looking at their faces and the tears in their eyes, I was finally able to better understand why it’s so hard to leave.

Bill and I sat on our back porch that evening looking out at our backyard where there used to be a swingset and an inflatable pool for our children to play in. There are memories of puppies who grew up to be the best dogs and then grew old, birthday parties, and eventually a pool full of our kids and their friends. This house is where our daughter got to pick out the color she wanted the walls of her room to be and this is the house we brought our newborn son home to. This is our kitchen where our son-in-law told us how much he loves our daughter and asked us for our blessing before he asked her to marry him. To think of having to one day walk out the door for the last time - well, I’d rather not. We’ve lived here for twenty-seven years out of the thirty-two we’ve been married and this house is our history. 

We’ll always have pictures and, I hope, memories and I know we don’t need a house to remind us of all that. But whenever I see the tiny little Christmas tree our daughter drew on the wall between her room and her brother’s I can’t help but smile. If or when we go, I’ll just cut out that part of the wall and take it with me. It’s not the house so much, it’s the life we built in it.

Inside looking out

We have a real departure from logic playing out in all our lives right now. Six months ago we had no idea that we would be working from home, wearing masks when we go out, and intolerant of anyone coughing anywhere within earshot. But here we are.

I usually write about my mom but, for now, I’m not able to see her. I know she’s safe and I know she’s being taken care of and that’s what has to matter for now. I am able to drop things off to be given to her and every time I go, just looking at the signs on the door that say no one other than essential personnel are allowed seems otherworldly. But it is real even though so many thought that ignoring COVID-19 and downplaying its effects would make it all go away. Didn’t we learn somewhere around age five that squeezing our eyes shut and jamming our fingers in our ears does nothing but make us look childish? Some of us did, others not so much.

We speak of the United States as being united, as one nation, yet when something happens that will affect the entire country the imaginary walls start going up. And to what end? The immediate fallout is hard enough to take but the effects of COVID-19 and the decisions of those we look to for guidance are going to last for a long time. This is not something we can fix. It’s something that we are going to have to adapt to and if we don’t, people will continue to pay the price with their lives, their jobs, and their financial security.

What I don’t understand is why logic is so easy to dismiss, why we tend to cling to misinformation like it’s written in stone, and why we think we’re special. I’ve done a bit of traveling recently and I can say with 100% certainty that there are no plexiglass walls on the border of each state; it’s just land and the borders are what humans have drawn on a map. Yet some of our leaders have decided that the rules don’t apply to them and if we just carry on as normal it will all go away. That’s not how science works. That’s not how any of this works.

I read an article in the Associated Press that summed up some of the misinformation that most of us have heard about COVID-19. Most of us know a conspiracy theory when we see one (we’ve had a lot of practice lately) while others grasp on and spread it like wildfire. Apparently, some people think there’s a link between the virus and 5G service. Nope. If you glance at a map of COVID-19 outbreaks overlayed with a map of where 5G service is being implemented it does look like there could be something in common and there is. The virus tends to be seen in heavily populated areas, the same kind of areas where new technology is launched. Makes sense, doesn’t it? And yes, I’ve seen the pictures of dead birds in the Netherlands and Italy who were supposedly killed by 5G. The birds were killed during a storm which is not uncommon; it’s sad for the birds but it wasn’t technology that killed them.

As for tonic water being a cure since it contains quinine, that would be absolutely wonderful if it were true; everyone wants life to get back to normal and if Schweppes tonic water did the trick we would know. For heaven’s sake, medical workers are exhausted and people are dying alone - who would stretch that out just to keep tonic water a secret? Stay hydrated and have a cocktail if you’d like but Facebook groups are not the place to go when looking for advice or a cure. At the least, that information is useless. At the worst, it can kill you. Where is the logic in that?

I understand that it’s human nature to look for the reason bad things happen and to launch blame at the people and situations we don’t like or we don’t understand. I’ve done all those things myself because that’s what my mind does, it looks for connections. I’ve spun my wheels and gone down rabbit holes many times in my half century plus a few years on earth and I’ve learned that things happen, they just do, and the only thing we can do is control our reaction to them. Slow down, stop, and breathe. Bouncing off walls doesn’t do anyone any good and frankly, it’s exhausting to watch.

We’ve all learned a thing or two from this pandemic and we’ve had a crash course in human nature. We’ve learned that people panic at the thought of not having enough toilet paper (get a bidet, for real) and we start baking our brains out. The latter has been happening in my house and it’s not me, who is usually the cook, it’s my husband. He’s been on a mission to recreate the oatmeal bread his mom used to bake when he was growing up and at around loaf number six he did it. He’s used more flour in the last month than I have in the past five years - yet we still looked at each other in amazement when the flour aisle was empty. What in the hell are people doing??? Oh wait. It’s us, we’re those people. 

Amongst all the bad news and bad behavior I’ve seen some good things. Some really good things. People helping each other and spending time with their kids, pets who are almost never alone, and sweet acts of kindness. I hope the good ways we’ve been treating each other and appreciating our time together lasts far after we get our act together and get back to our new normal.  And I hope we learn that we are not immune to the world’s problems, we cannot just turn our backs and wish for bad things to go away and blame others and point fingers. Nothing gets done like that in a family, and nothing gets done like that in a country. Why would we tolerate the selfish actions of those we trust with our lives when we wouldn’t tolerate those same actions in our own households?

Stay safe out there. Someone is counting on you and looking to you for guidance. Don’t let them down. 

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.

It's more than a job

I’ve written a lot about what it’s like to have a mom with dementia and its effect on me. If you do a quick search on dementia or Alzheimer’s Disease you’ll find all kinds of information: early symptoms, how to make things easier for those who have it, what it’s like to have a parent or loved one with the disease, and online communities to join, just to name a few. There is no shortage of sites where family caregivers can get specific support or information; faith based, memory care, in home care, respite centers - it’s all there.

However, I’ve noticed that there’s a very particular group of people who are not represented well and who have very little online resources for support. What about the people who have chosen caregiving as a career? I decided to make a few calls and find someone in the caregiving industry who would be willing to talk candidly with me about what they see, what motivates them, and what they really wish we, as family members, knew.

I found Erika*, who has worked in the industry for over a decade in multiple positions and locations. I had a list of questions for her and I thought I had a fairly good idea of how those questions would be answered. As it turns out, I was mostly wrong.

I expected to hear how difficult the job is, how hard it is to deal with combative residents, and how the families have no idea what the staff has to put up with. I wasn’t expecting a laundry list of complaints, not by a long shot, but I did expect to hear about what it’s like in the “trenches” so to speak.

Yes, I did hear about the difficulties of the work the caretakers and managers do; however, for the most part, I heard about why the people who care for our loved ones show up every day, why they stay late, and why this job is more than a job. 

It’s a part of who they are.

I started by asking Erika to tell me about some of the biggest challenges she has faced in her years of working in assisted living and memory care. She explained that one of the toughest situations is when a family has unrealistic expectations of what will happen when their loved one is moved into memory care or assisted living. The family may think this is temporary but usually whatever has made the move necessary is going to progress. That truth is hard to hear and it can take some time to process. Or, perhaps there is one family member who refuses to acknowledge there’s a problem and therefore, to them, it doesn’t exist. It’s a scary situation and it’s a lot to wrap one’s head around; however, stalling can result in a lot of stress and resentment in addition to a delay in getting help. However it happens, eventually the reality can no longer be ignored.

Sometimes, a family can be blindsided and they’re forced to deal with something they never knew existed.

Erika told me a story about a husband and wife, we’ll call them Larry and Ann, who had lived and worked on their farm their entire life together. Even though the location of the farm was remote and the work could be hard, they seemed to be keeping up and doing well according to their children. One day, Larry unexpectedly passed away and it became immediately evident that he had been keeping something from his family -  Ann had dementia and he had been masking it for years. Without him, there was no way she could live there and take care of herself, let alone the house and farm. 

None of their children had any idea.

Ann now lives in memory care and, every once in a while, she’ll share a memory of her days spent with Larry on the farm; when she does, her eyes light up and a wide smile brightens her face. It’s fleeting and it doesn’t happen as often anymore but the happiness she feels when she remembers lingers long after the memory has once again faded away. It’s those small glimpses of who the person used to be that can bring joy to the people who care for them.

I then asked Erika what kind of challenges the people who work directly with the residents have to deal with and what it’s like addressing those challenges. She replied that the largest issue comes from a lack of dementia education; while there is ongoing continuing education it can be unstructured and short on time. 

Without in depth education about dementia and the behaviors of those with the disease, it can be difficult dealing with a resident who is resistant or having a difficult day. Some of the staff can be “old school” or task driven and become frustrated when the routine gets interrupted because of behaviors they may not have learned to understand or interpret. 

Through education, the caretakers can learn how to respond in a way that benefits both them and the residents. Recently, the staff did have the opportunity to go through “The Dementia Experience” which is an interactive program that allows the caretakers to experience some of the symptoms and challenges of the disease. It was an insightful experience for everyone and it did make their understanding of some of the behaviors they witness clearer. Having the ability to see the “why” behind what the residents do helps the caretakers be better equipped to handle problems when they come up and lowers the levels of the stress for both sides.

Some of the other challenges the caretakers experience came as no surprise since I have witnessed it a few times during my visits with mom. They are sometimes physically attacked, yelled at, and called names and racial slurs - yet they keep coming back. It’s certainly not for the money; according to www.salary.com, the median salary for a certified nursing assistant is around thirty thousand per year but can be as low as twenty thousand per year, depending on years in the industry and certifications.

So, why do the caretakers return day after day? I’ll share more of my conversation with Erika in my next post. 

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

Keep going

I recently read a book, Ambiguous Loss: Learning to Live with Unresolved Grief , at the recommendation of a friend. It’s one of those books where, as I read, I’m seeing myself in the pages; I’m seeing my constant struggle to make sense of what is happening with mom - and, in turn, me - and I find myself feeling a sense of relief that there is a name for what is happening. 

Alzheimer’s and other dementias take so much away and leave vast uncertainty behind. It’s a terrible diagnosis for the person with the disease and for those who love them. And then there’s  the grief that comes in waves, along with sadness, anger, and yes, even self-pity. It’s hard to take sometimes. I had no idea what I was in for and even if someone had described it to me, I wouldn’t have understood. 

Twenty-four years ago my dad died in his sleep; one minute everything was normal and the next it wasn’t. That kind of grief, the kind that rockets into your soul and your heart and blows everything apart, dropped me to my knees. I remember looking around the room with the phone in my hand and it seemed as if everything had shifted. My world had changed and there was no going back, no easing in, no gathering myself up to face the inevitable, just a cannonball jump into a world my dad no longer existed in. 

The grief I’m experiencing with mom is different. I felt profound sadness and disbelief when this all started happening, and a lot of anger.  There was a sense of urgency to get her moved here and her medical needs taken care of, and tons of frustration with all the little things in between. Now that the logistics of her care is largely taken care of, the urgency is gone but the uncertainty never goes away.

In the book, Ambiguous Loss: Learning to Live with Unresolved Grief, the author, Pauline Boss, talks with a man named John whose wife, Sarah, was in the advanced stages of Alzheimer’s disease. When John was asked if his wife’s recent need for a feeding tube was the lowest point for him so far, his answer was not the expected ‘yes’; instead, he picked up a pencil and drew a staircase that was headed downward on a piece of paper. John explained that at each step, which represented each new crisis that came up, he had felt panicked and had no idea how he was going to handle it. But he did handle it, over and over again. At every new step there was a moment of not knowing what to do, or how to adjust, or what was needed but, every time, he figured it out. He kept going.

And that’s what we as human beings do - we handle life as it’s served up. Sometimes a regular Thursday afternoon turns into something unexpectedly wonderful and sometimes a Tuesday morning turns our lives upside down in a tragic way we never saw coming. We adjust, we re-calibrate, we learn, and we do the very best we can at every new turn and then...we keep going.

Mom and her dog, Susie. November 1958

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

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.