How does dementia kill you?

Legendary Lady Vols Coach Pat Summit passed away this week. As most of the world knows, Pat had early onset dementia, Alzheimer’s type. I don’t know the coach personally. Having moved to TN in 2001, I of course knew who she was. My only claim to her was meeting her nephew at a bar in March 2001 and dating him a few times, until I finally told my mom about it and she helped me rationalize how crazy the situation was. But, that’s a whole other conversation. Anyway, several people have asked me in the last couple days, “How does dementia actually kill someone?” They figure dementia affects your memory but most people don’t die from it.

First of all, there are several types of dementia. The most common, accounting for 60-80% of all cases, is Alzheimer’s. Alzheimer’s disease is most frequently equated with memory loss and depression. And, caused by plaque build up in the brain, twisted strands of the protein tau, and nerve cell damage in the brain. Vascular Dementia accounts for about 10% of cases, and is most often triggered by a stroke. Impaired judgement, inability to plan and make decisions are initial signs, and as the disease progresses, often Alzheimer’s type dementia sets in. Grandmother has Lewy Body Dementia. Similar to Alzheimer’s in the memory loss symptoms, but also causes sleep disturbances, hallucinations, and balance problems. Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein. When they develop in a part of the brain called the cortex, dementia can result. Parkinson’s Disease, Huntington’s Disease, Frontotemporal dementia, Cruetzfeldt-Jakob disease, Normal pressure hydrocephalus, and Wernicke-Korsakoff Syndrom are other recognized types of dementia. Many times, patients will have a combination of types of dementia, and this is referred to as mixed dementia.

Back to our original question, how does dementia kill you? The most basic answer is dementia is a disease affecting brain function. And, our brain controls all other functions of our body. So, when the brain starts shutting down, the body starts shutting down. Most dementia related deaths are either malnutrition or suffocation. The body doesn’t even know it is hungry, so you forget to eat leading to starvation. One of the most basic functions dementia patients lose, is the ability to swallow. The brain doesn’t tell that function to operate, so patients either choke and die, or the throat becomes blocked in their sleep and they suffocate. Because many dementia patients struggle with sleep deprivation, their immune system in general is weakened putting them at greater risk of developing other diseases and disorders such as diabetes, cancer, pneumonia, or even the common cold.

If you know my grandmother, you know she walks with a “drunken gait”. That is the dementia. It’s almost like a severe case of inner ear where her balance is just off. Sometimes, she will be standing in the middle of a room and not move. That is simply because she can’t. Not because she doesn’t have the strength to move, it is simply that her legs aren’t getting the message from her brain to walk. This makes patients extremely frustrated. They know they need to move, but just can’t make it happen. Grandmother also coughs and chokes alot. Again, this is caused by the dementia. Her swallow control is pretty rapidly declining. Sometimes she chokes on food, and sometimes it is just air. Her windpipe gets “clogged” and how most of us let out a quick cough or swallow to clear it, she doesn’t know how to automatically do that anymore.

As I have said many times, I absolutely hate this disease. It takes your dignity and self respect. It traps you in a terrible world. For several months grandmother has been wanting to buy new shoes. I got her a new pair of brown and black shoes for Christmas. But, she doesn’t remember having them, although she puts both on several times a day. Today, I finally broke down and took her to the shoe store, because I just couldn’t listen to it one more time. We get in the shoe store, and she doesn’t know where we are. I explain she wanted new shoes, so she walks around looking. A few minutes later, “What am I looking for here?” Shoes. We’re looking to buy new shoes. She picked out a pair, and of course they wouldn’t fit because of her feet problems. I directed her back to the specialty shoes that would work, and she cusses me and the sales lady about not paying $150 for the ugliest shoes she’s ever seen in her life. As soon as we get home, what does she say. “The next time you have a few minutes, I want you to take me to find some new shoes…..”

I hate that Pat Summit was taken by this awful disease. But, I hope with her death and Robin Williams wife announcing he had Lewy Body Dementia after his suicide, that more awareness is brought and we can find a way to better serve the vast population among us affected by this terrible disease.



No more funny stories?

I’ve had several people ask me why I’m not posting any funny stories about Grandma lately. I’m pretty good at making light of our situation, and laughing to keep from crying. But, the hard truth is, right now things aren’t very funny. It’s actually quiet sad.

If my “real” grandmother had any idea that her life was like it is today, she would run out in the middle of Lewisburg Pike and jump in front of a car. It absolutely breaks my heart to see her like this. What breaks my heart even more is to think how angry I get at her at times. I’m not really angry at her, I’m angry at this stupid disease, but I know I take it out on her. She’s told me on several occasions lately that I am hurting her feelings. Which, makes me want to jump out in front of a car. I often just want to call my momma and ask her what in the world to do, and apologize for not finding more joy in the journey of taking care of the woman who blessed me so much as a child. But, the good news is, Grandma does have dementia and 5 minutes after I hurt her feelings, she doesn’t remember. And, the Bible promises me there is no sorrow in Heaven, so hopefully Mom doesn’t see me on my bad days.

Grandma has been home from NHC a month today. She was a totally different person in rehab. I really think the facility is good for her. She gets the time and attention she needs to her care, and she has people to talk to. She doesn’t get that here. I have a full time job and 2 kids- there just isn’t enough of me to go around. So, she regresses. Her dementia is much worse than ever before. She used to ask the same question every 5-15 minutes. Now, she’ll ask the same questions every 5-30 seconds. It is very rare that she can recall the kids’ names on command. She never remembers eating.

We saw her doctor last week. And, he really caught me off guard. He just flat out asked me, “What is your goal here?” Excuse me? “What is your goal for her care? What is it that you want me to do for her? ” Before you jump to judgement about his terrible bedside manner, let me tell you he is one of the most compassionate, caring, and gentle doctors we’ve seen. I really like him. But, he’s right. What is our expectation here? He said, “Misty, she’s got a broken brain trapped inside a broken body. We can throw one more pill at it to give you more time, but it won’t give her better quality. She’s dying, and you are killing yourself trying to keep her alive.” Well, alrighty then. All of these words I know are true. And, I know beyond a shadow of a doubt that death is not the worst thing that could happen at this point in her life. Quiet honestly, for her sake, it’s probably the best thing that could happen. But, until you’ve walked in these shoes, you have no idea how hard it is to make those kinds of decisions. There’s a part of me that sees her as the only part of my mom I have left. And, as long as I have her here with me, I have part of my mom here.

We talked over some different options, and really talked about what my goals are. Where we’ve landed for now, is palliative care. Essentially this is a step down from Hospice care. Is she dying? Yes. Is it going to be tomorrow, next week, next month, next year? We don’t know that. Honestly, sooner probably more likely than later. But, we’ve been told 4 times in the last year that she wouldn’t be leaving the hospital alive, and she’s still kicking. Basically, we’ll have nursing care twice a week and physical therapy twice a week coming into the house. My main goal, if at all possible is to avoid my kids seeing her die in my house. With palliative care, we won’t be going to the hospital, doctor, or emergency room. If we’re having an issue, the nurse will come out. However, if we’re at a phase where the nurse thinks death is more likely than not, we’ll transfer her out of the house to either a skilled care facility or hospital.

None of that is funny, and we haven’t had the best medicine- laughter much lately. It’s a stressful season at our house. Summer is both of our busy times at work, the kids are out of school, Lexi Kate’s dance recital is this weekend (and we’re not talking anything like Sue Ann’s Dance Factory ever dreamed of), we’ve got some totally pointless neighbor drama, and we’re stretched just about as thin as we can get for the moment. So, please pray for us. Pray for our marriage, pray for our kids, pray for Grandma. Pray we navigate these days well. And, pray for funny things to happen!

Would you work for free?

In my former career I had a job coach once say, you need to love your job so much that you’d do it for free. As a know it all 23 year old, all I could think was there wasn’t a job in the world I would do for free. I mean, what’s the point? Well, I grew up in more ways than one, and I found a career that I’ve always said I would do it even if I didn’t get paid. Thankfully, I do get paid, and paid well to do my job, so that theory has never really been tested. Let’s be real, most of us got in this business because the income is lucrative and the schedule can be flexible. I mean, all good realtors have been taught to use the line, “If I can’t negotiate a fair price for my services, what makes you think I can negotiate a fair price for your house….” And, I know what my services are worth. I am not trying to be arrogant, but I know I am good at my job and I deserve to be compensated for the value I bring to the table.

And, then God starts working on a bigger plan…. I had been meeting with a wonderful family over several months, and we had developed the perfect plan on when to list the home they were selling to get a premium price and still give them the perfect timing to find a home in Williamson County before school started. A little back ground for you… this family involves the sister of one of my former roommates, who was a very faithful client of mine, and had referred her in-laws to me as well. The family had provided me well over $1.5M in sales in the last couple years. The current sister I am working with is the wife of a veteran, mother of 3 children. One of the children has some pretty severe special needs. In Tennessee after children turn 3, all support services such as speech therapy, feeding therapy, occupational therapy, and physical therapy are offered through the school system. This family wasn’t going to be adequately served by the services offered by the school the were zoned for. And, wanted to purchase a home in Williamson County, where the schools they were considering had services that better fit their specific need.

So, the magical day rolls around. We list their home March 1, with a plan to host an Open House the following day, and accept all offers on Friday. As we expected, we received multiple offers, over list price, and the family is to net more than they actually “needed” to net to move forward with the next step in their plan. They actually picked a buyer for their home based on the letter they wrote revealing who they were and why the loved their home. The kicker for them was the ministry they were involved in and also that the wife worked with special needs children. There were some rocky moments in the transaction, but all in all, God worked it out beautifully.

The whole time we had been talking, the family had indicated 3 or 4 schools they had wanted to focus on finding a home in that district. I always pray for my families and the process, and trust that God will provide them the perfect house at the perfect time. I’m not overly Biblical or force my clients to pray with me, especially if I know they aren’t Christians and would be offended by this. However, if a customer told me they didn’t want me to be praying for them on my own, I’d probably tell them they had the wrong girl. I just honestly believe God’s hand is at work in every transaction I do, and I trust Him to handle it. Anywho…. I just really felt like God was putting it on my heart that this family needed to be in a school they told me they weren’t interested in. I didn’t really push the issue. Okay, maybe I did…. I just asked them to please come meet with the preschool teacher at this school and tour the school to see if it might possibly be a fit. They had a great experience at the school, and within a couple days let me know that God had definitely confirmed this is where they needed to be.

So, we redirected our home search efforts to this school zone. Let me just tell you, nothing makes a realtor sweat bullets like convincing clients to change their home search criteria, running the search within their price and parameters, and have ZERO listings come up. I pulled to see what had closed in the last 3 months and what was under contract, so I knew things would filter through. So, as things came to market over the next couple weeks, I showed it to them. Nothing really worked. I began scouring social media and everybody I knew that might know somebody that would consider selling in this school zone. I showed them a couple off market properties. Again, nothing was really it. So, we stopped looking and just started praying. They were two weeks away from being homeless and none of us had a clue where they were going to live. Thankfully, God did provide some short term housing arrangements. But, we didn’t have a long term solution. Renting in this area wasn’t an option, as rental rates were far beyond their monthly budget.

So, I just sat on my backside and thanked God for making me look like a royal idiot. Not exactly like that, but we did have some serious heart to hearts….. A few days later Sam was sick and missed school. The following day he was begging to go back to school. If you know Sam, you know he would NEVER beg to go to school. He doesn’t mind school, but he would much prefer to stay home any day of the week. As he didn’t have a fever, and had went 24 hours without throwing up, I decided to take him to school at 10:30 once we passed the 24 hour mark. I was that crazy mom. Again, something not at all in line with what I would normally do, but that day it just seemed like the right thing to do. As I was in the school office checking Sam in, I over hear one of the teachers talking to the secretary about considering selling their house and building something new. I just happened to know where this teacher lived, and it was the perfect neighborhood for my clients. I went out on a limb and asked them more details. My heart immediately sank when they told me how big the house was, what street it was on, and how many bedrooms it had. Without even walking in the house, I knew it was at least $50,000 out of my clients price range. With a defeated spirit, I thanked them for talking to me, told them I would be happy to interview to about listing their house, yada, yada, yada…..

Then, God starting showing up in a big way. As I was driving back to my office, I felt an overwhelming sense that this was the house for my clients. It was almost as clear as if God had said out loud this it, get to work… I’m not a hardcore sales person. If I had to hard sell to earn a living in this business I would be homeless. It’s just not who I am. But, I knew God was telling me to follow up with the teacher. And, I also knew He was telling me that meant I was going to be working for free. We had a couple conversations over the next few hours on both accounts. I mean seriously God, work for free- we need to eat too. And, call someone back, and beg them to let me facilitate this transaction without interviewing other realtors who would tell them what massive amount of money they could get for their house? Once I got settled, where I could think, I emailed the teacher and basically said, what’s your bottom line? If you could sell your house as is, didn’t have to do any work to get it ready to market, and didn’t have to pay any commissions, what would could you sell it for? I told them to talk to with their spouse, pray about it, and call me back. When they told me the number, I knew this was probably going to work out. It was still about $20,000 beyond my clients max budget. But, I’ve gotten pretty good at knowing what monthly payments look like based on loan type, and I knew this could work. The other funny thing, is I am usually ultra conservative when finding people homes within their budget. If you tell me $175,0000-$200,000, we’re looking at houses in the $180,000 range. I just don’t want people to be house poor. So, my next call has to be to my clients to tell them I need them to get a lot more money.

So, I called my people and told them what I was working on. I didn’t pull the God card on them right away. I just basically said guys, we’re butt hole deep in this thing, do you think you can get approved for $xxx? Thankfully, they like me and trust me, and rolled with it. They called their lender, got the money, and 2 days later we were all meeting at the house to see if this could work. We spent about 15 minutes actually looking at the house, and another 45 minutes with the families just sharing their testimonies of how God was working in their lives. It’s not every day on the job that kind of thing happens. And, if you really want a few extra goosebumps to know just exactly how God was definitely at work, hear this. The sellers never intended on leaving this neighborhood. It was actually the second home they had owned on that street. But, one day, God just told the wife it was time to move. That week that God planted in their heart to move, was the same week we listed my clients house for sale…. Coincidence, I don’t believe so. And, since the time we went under contract, a family has moved in across the street where the wife is a special needs teacher and they have 2 special needs children of their own.

And, the terms we were able to work out as part of the sale fit everyone’s timeline. The dollars on both sides of the deal were less than $1000 off from being EXACTLY what everyone needed to make the next steps happen. God provided temporary housing for both families as we waited for the next steps to take place.

And, I was reminded that when I am praying for my clients and for God to provide the perfect house for them, He wants me to pray expectantly. He wants me to trust Him to do more than I could ever ask or imagine. He wants me to KNOW that He is going to bless their socks off in His perfect timing. My folks were just hoping to get a 3 BR fixer upper with maybe 2000 square feet. They got a 4BR house, with a living room, bonus room, den and dining room, lover 2700 square feet, a huge fenced in back yard, neighborhood pool, and amazing location. God is faithful. So, do I love my job enough to do it for free? Yep, and today I got to prove it. I went to 2 closings that should have resulted in roughly $20,000 in commissions. And, to be completely honest, I thought about that lost income more than once. But, never once did I wish I hadn’t done it. Instead of a deposit in my checking account, I got blessings deposited in my faith account. When things look impossible, God will provide. And, I can go to bed tonight resting well in knowing that doing the right thing is always the right thing.

So, friends, please don’t start praying that God needs to convince me to sell your house for free too. After all, I do have a family to support. But, I am beyond grateful for this opportunity to serve these two families and know that it isn’t all about the money.