Mom’s Stomach Issues

Mom has been having stomach issues for quite some time now. She will go days, and even weeks, with little problem and then suddenly a stomach “attack” comes on. Lately, these episodes are becoming closer together.

An episode usually starts in the evening or in the middle of the night. Usually. Mom starts to feel “severe” and in no time she is hovering over her small wastebasket at her bedside, gagging and throwing up phlegm and liquid. By the next day, she refuses to eat because she is afraid that if she does, it will upset her stomach and she will throw up again. So it continues for a few days: mom, throwing up while taking her usual medicines and refusing to eat.

I believe it’s a cycle. Mom’s stomach is upset. Mom throws up. Mom refuses to eat which makes her stomach even more upset causing her to become nauseous and eventually throw up again.

The part that is unclear is why she is getting sick in the first place. We’ve brainstormed many ideas: maybe she’s developed a lactose intolerance (we switched her milk to almond milk, unbeknownst to her) or maybe she’s eating spoiled food (this could still be a possibility, but we try our hardest to keep up on cleaning out the fridge). We have taken her to a specialist (the “stomach doctor”) who has done ultrasounds and CT scans. Nothing shows up. Yesterday, dad had another appointment with this doctor to follow up with past issues and again, he said that there was nothing obvious that was showing up that could be a source for her sickness. He recommended that they put mom under anesthesia and do some sort of exploratory procedure to see if anything else can be seen. Dad told him that he would consider it, but hasn’t made a decision on whether or not to put mom through this.

There are pros and cons to the procedure. The pro would be that we could possibly find a cause for her stomach issues. The cons are many: how will mom do under anesthesia? Could it cause further complications with mom’s condition or could it “push along” the disease process? If they do find something-say, maybe cancer-what good would that knowledge do [I know this sounds horrible, but if indeed they did find cancer would it be worth putting mom through chemo in her condition and with the quality of life that she has to look forward to?] These are all things to consider.

The biggest question remains: if we put her through this test, are they actually going to find something or is a lot of this in mom’s head? With semantic dementia, hypochondria is a big problem. This was explained to me at our last visit with UCLA, that with this form of dementia, their mind is losing memory/recognition of what certain bodily functions mean. For example, mom’s stomach may growl or hurt because she is hungry, yet she doesn’t understand that what she is feeling is related to hunger; she becomes confused with what she is feeling. Because of this lack of recognition, they become preoccupied with and fixated on every sensation they feel. Could it be that mom is simply hungry but cannot recognize the hunger pain? Rather than eating and putting an end to the hunger pains, mom starves herself for days, only occasionally drinking Slim Fast, Ensure or water, all the while continuing to take her medications. It becomes a cycle: not eating, feeling sick, not eating because she feels sick, feeling more sick because she’s not eating.

Within the past 2-3 months, mom’s eating habits have significantly worsened. She hardly eats (which could explain her increase in stomach problems). She’s losing more weight. She drinks Slim Fast for breakfast, Ensure most nights for dinner and eats only a sandwich at lunch time. Sometimes she will snack on fruit or Poppycock in the afternoon. I know that when I do not get enough to eat, I sure don’t feel good! Despite our efforts in getting her eat, she keeps herself on a mostly liquid diet. She doesn’t recognize most foods anymore (the other day she didn’t even know what chicken tacos were…and that was one of her ‘staple’ foods only a few months ago!) and when we try to convince her to eat something we’ve made, she protests,

“No, different things now upset my stomach, no. I don’t know how that will make my stomach feel.”

I have tried telling her over and over and OVER that her stomach upset is likely due to her medication with her liquid diet. She will hear nothing about it. No amount of coaxing or explaining will convince her. We have tried everything we can think of. We are at a loss of what to do. :(

Waiting for the Storm to Pass

This summer marks 10 years that my hubby and I said our “I Do’s”. Every year, we take a weekend away somewhere-just the two of us-to celebrate our years together. Hitting the 10 year milestone this year, we felt it was only appropriate to do something big. For the past year, we’ve been brainstorming places to venture away. We both love the water and the sunshine and decided on a popular tourist destination that we haven’t yet been to: Cancun, Mexico.

For months we planned this trip. We researched the best sites to see and places to visit during our stay. We greatly anticipated our getaway and I prepared by shopping for swimsuits and daydreaming about the long hours I’d spend laying out on the beach, soaking up the sun with a good book in hand. For an entire week I would cast away my worries and the stress of everything else going on in my life and just enjoy being carefree and having uninterrupted time with my husband. This vacation was all about us;  it was about sun, fun and relaxation. And boy was I looking forward to it!

Late Friday night (a week ago) I kissed my kids good-bye and hopped on a plane with my other half to begin our week of Paradise. We arrived in Cancun Saturday afternoon…along with Andrea-a tropical storm.

We didn’t realize, at first, that a tropical storm was following us in. We’ve vacationed in the tropics before and have had storms come in, stay for a couple hours, and then head out. I figured this rain would be the same. So I wasn’t terribly concerned when we ventured out on a shuttle to the Sister Resort of where we were staying. While we were there, the rains came down harder and harder, so much that when we were ready to go back to our hotel, the shuttle driver refused to drive on the roads and told us we’d have to wait a couple hours or walk. We attempted to walk. Oh how foolish we were.

The roads were so flooded that we ended up taking off our shoes and wading in calf-deep water to find the public bus stop. We hopped on the bus and were SOAKED by the time we made it back to our hotel. We got a good laugh out of it. After all, the storm was sure to be over and in the morning I’d be laying on the beach sipping my (virgin) strawberry daiquiri and soaking up the sun.

Well, the morning came. But the sun did not. In fact, for the next 4 days it rained. It rained and it poured as Tropical Storm Andrea unleashed her fury on Cancun. At first, I decided that the rain was not going to hold me back from having fun. We booked our trip to see the Mayan Ruins of Tulum, followed by snorkeling at Xel Ha. But I have to admit, the rain really put a damper on everything. It was hard to relax and have fun with rain pounding down and blowing into my eyes. The wind, along with the rain, made it too cold to fully enjoy the experience in the water. There was supposed to be sunshine. I was supposed to be getting a suntan and taking naps in the hammocks. This was NOT how I envisioned my trip to be.

Still, we tried to have fun. We had to modify our original plans and we did have some fun. There were moments that the rain stopped and we were able to swim in the pool (under the gray clouds) or shop at the flea market. We took advantage of the hotel’s spa and got a couple’s massage and joined in the night life activities at the resort (all of which was indoors). But we also had many moments of despair as our plans were constantly changing and put on hold due to inclement weather. By Wednesday morning, the rain was so bad that I was sure a hurricane was coming. For the 2nd day in a row, our horseback riding trip had been cancelled as had most other trips because the storm was too debilitating to drive through. I laid in bed all morning, covers over my head as I cried about my ruined plans (and lack of sunshine!!!) We even debated throwing in the towel and coming home early. What was the point of staying through the storm?

That night was karaoke night in the hotel lounge. We walked down (through the rain) and met up with some other friends we had met the previous day at the pool. They asked if we had still planned on attempting the day trip we wanted to take to XPlor the following day.

“We just don’t see the sense in paying all that money to go just to be rained on,” Jeff explained.

“Yeah…we figured it was either be rained on at the hotel, or be rained on while doing something fun,” our new friend answered back.

I contemplated what she said. I looked outside to see that the rains had stopped and the trees were still. My brother, also known as “Weatherman Joe” (due to his obsession with tracking tropical storms), told me that by Thursday the storm should be making it’s way up to Florida. I wasn’t holding my breath, but I also knew that I couldn’t handle another depressing day in the hotel. And I was tired of cancelling trips!! Jeff and I briefly discussed the day trip and decided we’d take the chance and book XPlor for the next day. We had determined, by this point, that no hurricane was coming and the worst case scenario would be that we got rained on. Half of the day trip was swimming and rafting in caves anyway, so rain wouldn’t really make a difference. I decided that no matter the outcome, I was going to have a good attitude and make it a great day!

Thursday morning, for the first time since we had arrived (and our last full day in Cancun), we woke up to blue skies and the sun shining overhead. That put a huge smile on my face! We met our shuttle and journeyed to XPlor where we spent the day in sunshine with not a drop of rain! We ziplined, swam in caves, went on rafts through caves with stalactites and stalagmites and took a turn driving an all-terrain vehicle through caves and over bridges and mud. It was awesome. Had it rained, we still would have enjoyed the day because I told myself that were gonna have fun!! The sun was an added bonus!

  

I’ve thought about this vacation as a metaphor for my life. 10 years ago, I was on top of the world. I was madly in love, getting married and starting my new life. I had a perfect vision of what my life would be like. I had everything mapped out; I anticipated what was to come and daydreamed about what life would be like in the future. I never saw the storm coming. I never anticipated the heartbreaks that would come my way, the things I have had to go through over the past few years and even more recently, the past few months. I never imagined life to be this way and I have to admit, I wasn’t quite prepared for it. Tropical Storm Dementia has altered my course.

There have been times when I have resolved to stand strong and make the best of the situation. And there have been times when I have laid in my bed, covers over my head, and cried at the storm that was looming overhead. Last week was another reminder to me that when the storm comes, I need to buck up and make the best of it. Had I stayed in that hotel bed and continued feeling sorry for myself, I would have missed out on a fabulous day. There are moments now when I feel consumed with sadness. I admit that some days, it would be much easier to stay in bed than to face that dark cloud. But if I give up and let those feelings take over, I will miss out on making precious memories.

This morning I was sitting in my class at church when I saw my mom standing outside the open door of the room (we attend the same church building; but our services are at different times and our last hour of church overlaps their first hour of church…if that makes sense;) ). Mom knows exactly where to find me when she arrives and always likes to find me before she seats herself for her own service. She peered inside the room, saying “Cassandra? Is she here…Cassandra?”

I excused myself and went out to the hall to greet my mom. It warmed my heart to see her (after being a week away from her) and to see her smiling and genuinely happy to see me. My heart was filled with love for my mom and  I gave her a hug and told her that I had missed her. In that moment, I felt so grateful that my mom is still here with me. Although the person she once was is fading away, she is still here and she is teaching me great lessons of patience, service and unconditional love. I am trying my hardest, each day, to rise above the storm.

Thanks, but No Thanks.

Before I was a mom, I thought I had motherhood figured out. I graduated with a degree in Early Childhood and thought I was pretty smart. I attended several trainings for my job as a preschool teacher and read many articles and books on discipline, parenting, etc in an effort to help me in my job and prepare me for my future of motherhood.

What I learned upon having children, is that no book or training prepares you for the real life situations you face in daily parenting. I found early on that the textbook logic answers don’t always work and each child behaves and reacts differently to things. A great example I can give to you is the toddler store meltdown. When my first child was only a couple years old, she began having massive tantrums in the store when she couldn’t have what she wanted. The textbook answer to tantrums: do not give in to what they want and remove them from the situation. If only that worked! As I tried to put my brilliant parenting knowledge to action, and calmly explain to my daughter that she would NOT get anything when she threw fits, her tantrum only increased. She made a big scene. I could feel my face grow hot and redden as I struggled with a writhing, kicking, screaming 2 year old who couldn’t have whatever object it was that she wanted at the time. I could feel the judgmental stares burning into me and I remember one lady shaking her head and rolling her eyes. I could’ve died!

I’ve had many a lessons such as this one, as I’m sure every mother in the universe has. There is always someone ready to criticize, judge or make suggestions on your parenting techniques. I have definitely gained some wisdom, and humility, since becoming a mother. I know not to judge too harshly with the way a child behaves and the way a parent chooses to handle their child(ren). It is such a personal thing and there isn’t always a clear answer as to what is right and what is wrong. And a child’s bad behavior is not always a result of bad parenting. Most parents are doing the best they can with the tools they have.

This same conflict exists with care giving. Like parenting, it is a tough job. There is not always a right or a wrong answer in a given situation. Most of this is trial and error; we learn as we go what works with mom and what doesn’t work. People can be very quick to give their opinions on how you should handle your loved one even though they are not there on a day-to-day basis to really understand what is going on with that person.

I’m not saying that all advice is unwelcome. There are times when it is appropriate. Sometimes we may not know the best way to handle a situation and we look to others for ideas of things that have worked for them.

In the beginning of mom’s diagnosis, many family members had their opinions on how her health should be managed. What we also found was that the people who had the most opinions were the people who were around the least. We made it very clear that if any member of the family wanted to be a part of mom’s life, criticism and sneaking behind our backs to do what they felt was the better option for mom would not be tolerated in the least. It seemed to nip the problem in the bud, for the time being.

Recently, I had one family member email me about an issue regarding mom and very quickly it became an attack on our care for mom.

“You should have done this a long time ago….I told you that you needed to…blah blah blah.”

Ironically, this person has only been over to see mom once in the past 8-12 months. She rarely calls. Only recently she has been talking to mom again on the phone (when mom calls). I would hardly say she is in any position to give advice on how to handle the situation. Nobody has the right to tell a caregiver what they are doing wrong or right. This is an extremely difficult position to be in; to have to reverse the roles and take away mom’s independence little by little and be forced to treat her a child. Many times the things we have to do are hard and it takes a little bit of emotional prepping to do it. It’s not that we don’t know what we should be doing, it’s that we need to get some courage to do it. Sometimes it is about choosing our battles and allowing mom to keep some of her freedoms for a time until it becomes necessary to take it away. I repeat again, it is a difficult position to be in.

If you are just starting your journey with dementia, take it from me: people will come out of the wood work with all kinds of advice, opinions and even judgments on the care you give your loved one. I think it’s important early on to set the record straight and let everyone know who is in charge of the caregiving decisions. Be firm and stand your ground. It is easy to be taken advantage of, to question your ability, to feel inadequate in the care you give. Seek advice when you need to, but turn to the right sources for help (you can visit my resources page for ideas). Last of all, have confidence in yourself and don’t let the naysayers bring you down. There will always be someone there to criticize the job you are doing, no matter how well you do it. Let it roll off your back and spend invest your energy where you need it most: in your caregiving.

“Let Me Know If You Need Anything!!”

I might not be too popular for writing this post. Very likely, some will be offended at what I have to say. But my intent in sharing this blog is to share the whole journey: the good, the bad and the ugly. It defeats my purpose in writing to pick and choose which pleasant or unpleasant things I will share.

When someone you love is diagnosed with a terminal illness, emotions run high. You will encounter many people-friends and family alike-who are “devastated” with the news and some will spend days crying about it. Through weepy eyes and sorrowful voices, they will tell you,

“If you need anything-anything at all-I’m here. Please don’t hesitate to call.”

The problem is, talk is cheap. If you are just starting out on your dementia journey, take it from me. There will be many well-wishers and good-intended people in your lives…in the beginning. As time goes on, you will learn who is just talking and who actually means what they say.

Sure, people get busy and people have their own lives and their own problems. Others are just full of excuses, to put it bluntly. But why cry and pity and offer to help if it isn’t sincere?

Lately I’ve been feeling very discouraged. I try to look at the bright side and see the cup half full. When my dad had the ceiling fiasco, we had friends and family who dropped everything to come over right away and help. My heart was touched and full of gratitude for those people who were there for us in our time of need. But we also had the well wishers, “if you need any help…” who couldn’t be bothered to even return phone calls to help my dad with some finishing touches (might I add that my dad is not a freeloader, he was going to pay these “friends” what they were worth to get the job done quickly so as to restore order for my confused mother).

This is just one example of many that I could share. One of our biggest struggles is caring for my mom. She is to the point that we really aren’t comfortable leaving her alone. It is impossible for me to be there with her everyday. My dad has to work; he’s not even close to retirement. When it came time to put those words into actions, there was little help to be found. My mom has one brother and his dear, sweet wife, who go over every week. I know it’s a big commitment. I know there are probably other things they would like to do with their time. I know because I’m in the same boat; I have a lot on my plate as well. But their love for my mom and my dad keeps them dedicated to coming over despite the obstacles they may face in coming.

We haven’t been this lucky with everyone. We have had some family volunteer to come over, only to “call in” most weeks that they aren’t feeling good or have other plans and can’t come in. Some have volunteered to help “in any way” but then want it done on their terms only, such as dropping mom off at their house for the day. Anyone reading this who is caring for a loved one with dementia knows that that is NOT going to work out too well. With mom’s obsessions and rigid routines, she thrives best in her own environment. There’s no way we could get her to go to someone else’s house for babysitting.

We’ve had some who have said they are available to help and then expressed their hopes to others that we hire them on as a paying caregiver. We’ve had some offer to help clean,

“You just let me know what you need done and I’ll do it.”

When I asked her if she might be able to do some dusting around the house, her response was,

“Oh, I really hate dusting. That’s my least favorite chore.”

Needless to say, that was the last time she volunteered to help with chores.

We’ve had some who have offered to come and help but then asked for gas money or to borrow dad’s car to drive mom across town to run errands. And complained at how “unfair” it is that dad would not let them borrow the car (despite the fact that he did give them gas money).

The thing that hurts the most about this is that there is no spirit of love and service. This is not family. Family is supposed to be there for each other through thick and thin with no expectations of anything in return. At least that is what my dad taught me. That is the kind of family member he has been to everyone.

In fact, that is the kind of MAN he is. Throughout my life, I have watched my dad give countless hours of service to others: friends, neighbors, family members, church members (my mom has given lots of service, particularly in church, over the years as well). He has done it all out of the goodness of his heart. He’s never given a minute of service-not even a minute!- with the expectation of gaining something for himself. He would never even think of such a thing!!

Lately I’ve really been struggling with feelings of bitterness and resentment at the lack of reciprocation my parents have received in their hour of need. In part, maybe it’s our own fault. Outside of family, it is extremely hard to ask for help. My dad won’t ever ask for help (except in the instance such as the ceiling, where he fully expects to compensate that help). But family and close friends and friends from church know of the struggles we face. They ask; I am open in sharing our struggles and challenges. I feel abandonment for my dad, if that makes sense. I am hurt for him; hurt that people can’t see the sadness and the despair and the challenges he faces and try to help lighten his load. As if it isn’t hard enough to have lost most of the woman he has known and loved nearly his entire life, he now faces the challenges of balancing all of her duties that she once tended to (cooking, cleaning, laundry, bill paying, grocery shopping, etc) WHILE working his business and WHILE caring for her. To have family offer to help and then flake out when push comes to shove only adds more hurt and more stress to the situation. I know he feels he is in way over his head…we all do!

Last Saturday morning, my husband took our boys over to my dad’s house (while dad was at work) and mowed his lawn. He didn’t tell him he was coming over, nor did he plan on telling him that he was the one who did it. He had our boys pick up the leaves and clean up the trash that the wind had blown into the yard. Later that day, my dad called me and said he knew Jeff had come over. We both feigned ignorance at his accusations, but he said this,

“I came home and noticed somebody did my lawn for me. I was feeling pretty good, thinking someone from church must love me and must have come over to mow my lawn. But then I realized that nobody would do that for me; I have no friends so it must have been Jeff.”

It hurt me to hear him say those words: “I have no friends”. After all he has done to help others in his life, it’s a shame that he feels this way. I know many who love my dad and think the world of him. But it’s true what they say: actions speak louder than words; now more than ever.

It isn’t enough to put the offer out there. If you don’t mean it, don’t say it. It hurts more in the end when people give false illusions of compassion and concern. For those of you reading this who are in my shoes, you are probably shouting your “amen” at home! You know exactly what I’m talking about. For those of you who know someone who is struggling with this disease, or any terminal/debilitating illness for that matter, I challenge you: reach out to those people! Don’t wait for an engraved invitation to help. Do not give empty offers and vain condolences for their situation. Be proactive and do something! Take a meal over, visit with the person, show up and do their yard work or clean their dishes, take them a plate of cookies…even just sending a card or a note to let them know that you are thinking about them can mean a lot!

There are many lessons I am learning in this journey of dementia. This is just another one of those lessons. I am far from perfect and I’m sure at one time or another in my life I have said the same thing,

“Let me know if you need anything.”

I think twice before I use that phrase now. I will take this as a life lesson to be a do-er, not a say-er.