Tuesday, May 28, 2013

Camping With Mom

Since before I can remember, my mom’s family has been going camping every Memorial Weekend at a place called Heartbar Campground in the San Bernardino Mountains. In talking with my Uncle, we established that this tradition began the year I was born (1981). It’s fun to look back and see how these camping trips have evolved over the years. My earliest memories are walking across fallen trees with my cousins, our arms outstretched to our sides to balance ourselves while listening to my cousins speak of the legends of children gone before us who had fallen into the camp’s pit toilets. As we grew into teenagers, we spent most of our time going on hikes to the meadow and having big competitions with cards and board games. As a young newlywed, I still enjoyed a good game with my cousins but I also enjoyed the quiet moments of laying out on our camp chairs, snuggling with a good book. Nowadays, I watch my kids play and make their own memories with their cousins. I try to get a chapter read or a hand of cards played in between my chasing of my 2 year old or wiping down dirty hands and faces. And making sure that everything is going smoothly with mom.

Last year, we thought it would be our last year camping due to mom’s condition. Earlier this year, when my Uncle made his reservations, I decided to book a couple camp sites for my immediate family and in hopes that my siblings and parents would be able to join us. We talked about camping with mom, and as it turned out, she was actually looking forward to going. She even talked to my dad about bringing up her bike so she could be “active” and get some exercise.

That was a couple of weeks ago. Things change on a daily basis with mom. Thursday night, mom was complaining about feeling “so severe” and by Friday morning she told my dad she didn’t want to go. A lot of preparation goes into a trip like this (and in prepping mom and dad’s trailer), so dad wasn’t going to give in that easily. We all figured she could feel severe at home or she could feel severe in the trailer. At least if she was up in the mountains, she would have some distractions and maybe even feel better.

I didn’t make it up the mountain until Friday night; my dad and my brother’s family joined my Uncle earlier in the day. According to them, mom was a mess when she first arrived. She was complaining and throwing fits and was quite unhappy to be there. As I drove into camp, I saw my two Aunts walking beside my mom and holding her arms while mom hunched over, taking baby steps to the trailer. Oh great, I thought. This is gonna be a long weekend!

Mom went to bed early Friday night and when she woke up Saturday morning, she seemed to be in better spirits. Granted, I didn’t sleep in the trailer and I don’t know all that ensued the night before or even that morning. But by the time I saw mom, she was drinking her Slim Fast and seemed to be over her temper tantrums. She stayed in the trailer all morning and then eventually, in the early afternoon, she peeked her head out the door to see what was going on in the outside world. Several of us were sitting in a circle, chatting with one another while the kids played nearby. We called to mom and she apparently decided it was safe (and warm) enough to come outside and join the crowd. She sat in the sunniest place the camp had to offer, wearing a thick, fleece sweater (it gets pretty hot in the sun…but mom likes the heat nowadays!) She stayed with us for a little while and took a short walk with my Aunt (maybe 100 yards) before returning to her trailer to lay on her bed and take a rest.

And this is how the weekend went. Mom came out for short periods of time, and then went back inside to rest on her bed. She took short walks here and there, never more than a couple hundred yards at most. Dad reminded her about the bike that she had begged him to bring up. At first, she looked blankly at the bike and backed away from it. After a while, she seemed to remember that she wanted to ride her bike and she asked dad to help her remember how to ride it.

We all watched, nervously, as mom teetered on the bike. Last year, she rode around the campground with my nephew. It didn’t seem to us that she still had the ability to ride a bike. We all started to protest that it was a bad idea to let her ride. But…then she figured it out! We were still very nervous about her riding the bike, so I hopped on dad’s bike and decided I’d follow her to make sure she was safe. We rode a couple hundred yards (at most) and then mom turned around and said,

“Please let’s go back to the trailer now.”

The next day (Sunday) mom made an appearance again outside her trailer. She went back in to lay down and rest but surprised us all when she came back out to sit and snack on Poppycock (popcorn)…during her nap time!!!

Camping with kids (and mom) can be very fun but very tiring. It’s hard to find a peaceful moment. On Sunday afternoon, the guys finally took the kids away on a hike, leaving us ladies with some peace and quiet as we lounged in the hammock and in our chairs, reading our books and enjoying the fresh, crisp breeze of the mountain air. Peace and quiet at last! No sooner than we opened our books then we heard music begin to blare from the trailer.

See, one of mom’s favorite things to do on a Sunday afternoon while camping is to blast her radio as loud as can be playing her “church” music-usually the Mormon Tabernacle Choir.

My sister-in-law, family friend (Stephani) and I all looked at each other and sighed…and then chuckled. Just our luck!

“At least it’s not in Spanish,” Stephani joked.

As the song ended and a commercial cut in, my eyes grew wide and I turned to Stephani,

“It IS in Spanish!”

We laughed even harder and listened to mom’s Spanish music while trying to read our books. Not too long after, dad returned to the trailer and mom was complaining about the radio not working right. She began nagging him to help her put on her CD and when he put it on, she turned it up full volume. Dad looked out at me and said,

“Why don’t you see if your mom wants to go for a bike ride.”

I took that as my hint that dad needed a break and convinced my mom to take a ride with me. Again to my surprise, mom was easily distracted away from her music and agreed to take a ride with me.

My sister was trying to get mom to pose for the camera, but mom was oblivious to her requests. Please excuse this awful picture of me, keep in mind that we were camping, and I was roughing it!! I told you before, this blog shows the good, the bad and the ugly! Ha ha. ;)

camping 3 

This time, we made it more than 200 yards. As we rode, mom talked about a road that she used to always go down, but was having trouble remembering where it was.

“And it was the main road place, we always went by that one place too where it went up like that and do you know where that is too?”

When we reached a slight incline, mom stopped her bike and slid off the seat, her legs straddling the bike as she walked it up the hill.

“It’s so weird too how this makes my legs hurt so much too like this and I wish I could get a bigger part too to sit on too because it hurts to sit on this. Does it hurt you too to sit on it?”

Mom chatted my ear off as we rode a couple loops around the campground. She always let me know when she was done.

“Now take me back to the trailer please.”

camping 1 camping 2

Overall, I think mom did pretty well camping…much better than I thought she would do! She even called me today to let me know how happy she was about our weekend trip.

“It’s so good too that everyone was able to go to that place together too for the camping thing too and even that you went on the bike with me too, that was so fun too so thank you for taking me too.”

I’m glad that she enjoyed herself. Despite her intense desire to sit this one out, she ended up having a good time after all and I really feel like it was a good thing to get her out of the house. It is very likely that this was the last camping trip that we will be able to bring her on (although we did think that last year…). While we had a great time together as a family, it was sad to think that this trip probably marks the end of our family camping memories with mom. But we will hold onto these memories forever.

Friday, May 24, 2013

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.

Wednesday, May 22, 2013


I’ve read a lot about the issue of “wandering” with dementia patients. Wandering is the term describing exactly that action: a person who wanders aimlessly with no destination or purpose. Often times, the wandering person ends up lost, as they are disoriented with their surroundings.

Lucky for us, wandering hasn’t been an issue with mom. And with semantic dementia, getting lost isn’t much of a problem. While they forget many things, they are generally able to make their way through familiar routes and destinations. Wandering occurs mostly in Alzheimer’s patients and in later stages of dementia.

Lately, mom has been wanting to get out to walk. She has walked places in the past and during the short period of time that she had a caregiver, mom and Teresa would take a walk every week up to Kmart, the Dollar Tree, etc. Mom seems to enjoy getting out and getting exercise and exerting some sort of independence (so long as it’s not too hot, too cold or too windy). Last week, mom wanted to walk to see her sister, who lives a mile down the road. Her other sister offered her a ride, but mom was adamant that she wanted to see “how good” she could do by walking. Aunt Claudia followed mom in her car as mom walked the mile to Aunt Ellen’s house. It seems that mom has a newfound freedom in walking. My Aunt forwarded me an email that mom wrote to her after her walk to her house:


I walked so good from your house I walked over one thousand and several hundred walks and onto the third street before Claudia got me and I felt okay. I wonder if I could ever try again all the way to some other friends houses too. Even the lady from church that meets you I can go there too and also my friend that lives behind you and one that live above you too. I hope I will be okay.

Love you,


I was expressing some concerns about this issue in an online support group in which I’m a part of, and I mistakenly used the term “wandering” (for lack of a better word). As I learned from others in the group, what mom is experiencing is not wandering. The correct term would be “roaming”. Roaming differs from wandering in that there is a purpose and a destination in their walks with roaming. I don’t know if, as the disease progresses, the roaming will eventually become wandering. My guess is that it will as she loses more and more of her memory and abilities. For now, mom is intentional in her walks and does not get disoriented in where she’s going.

The problem is safety. I worry that mom will not notice traffic or be aware of potential hazards in the road. What if she gets hit by a car? What if someone tries to snatch her purse or gets angry with her because of her oblivious behavior to her surroundings? What if she becomes dehydrated or tired or sick along the way? How are people going to react when she shows up on their doorsteps and what if memory serves her wrong and she ends up on the wrong doorstep? What if she eventually does become disorientated and loses her way?

The other problem is that she sometimes does things she shouldn’t be doing when out. For example, one day a check came in the mail (long story…the auto deposit was messed up). Right away, mom walked up to the bank, cashed the check and hid the money. Another example, yesterday mom walked up to the store to buy bacon. We have purposely kept bacon out of the house because it is one of the only things she cooks these days and it is a major safety issue (you can catch up on that post here).

When a caregiver is with her, this obviously isn’t an issue. It is the hours or days that she is left alone for the day that it becomes a problem. We have urged her not to go out alone but as with everything else, mom does not understand our concern and continues to do what she feels like doing. All we can to is take preventative measures to avoid any problems while she is out roaming. This is what we’ve come up with:

  • Mom takes her cell phone with her and has our numbers programmed into her phone.
  • I told mom to please call me when she plans to go out walking and to call me once she gets to her destination so that I know she made it safely. This works when she is not being sneaky about where she is going.
  • Neighbors are aware of the situation and keep us informed when she leaves the house. Sometimes they offer her rides out of concern for her walking alone. They have my and my dad’s phone numbers to contact us and let us know when she’s out. Lucky for us, the neighbors next door have been there since before my family moved in (over 25 years) and know us well and they spend a lot of time outdoors and in their garage working on cars and whatnot.
  • The clerks at the grocery store know mom and our situation. At least 2 of them have asked for my phone number and help keep tabs on her when she shows up in there alone. In fact, the store manager’s father also suffers from FTD, so he is very watchful and concerned with mom and helps keep a good eye on her.
  • We bought an ID bracelet for mom. Unfortunately, she won’t wear it. We’re working on a solution for this…maybe attaching it to her purse. I believe she has an ICE contact programmed into her phone as well.
  • We have to be attentive to situations. For example, I saw the broccoli and cauliflower in the fridge on Monday. So when mom called me yesterday and said she wanted to walk to the store, I knew exactly what she was going for. Bacon. (Dad bought her bacon bits, but it wasn’t the right stuff). We have to try and keep one step ahead of mom and anticipate what her next move will be. It also helps that she has a routine, so we know what window of time she will attempt to go on her walks and can check in with her on those times.

Hopefully soon we will have people with her everyday and we won’t have to worry about her getting out to walk on her own.

For those of you who find yourself in the same situation and roaming has become an issue with your loved one, take preventative measures! Don’t be afraid to talk to people in your community (neighbors, cashiers, etc) about your situation. Chances are, they are concerned and willing to help.

For those of you who read my blog who are friends/neighbors that live close by mom, consider this your warning…you never know when my mom will show up on your doorstep ;)

Thursday, May 16, 2013

Mom’s Birthday


IMG590Do you remember when you were a little kid and it was your birthday and you were SO excited that “today is my birthday!”? All day, you wore a grin on your face and made sure to tell every person you came in contact with that it was your special day. Sometimes, you might have even asked somebody what present they had gotten you for your birthday, while your mom stood by, cringing. At least, that’s how I remember my birthdays when I was a young child.

Mom is still very much aware of birthdays, hers in particular (and her brother, Jeff’s birthday whose is a week before hers). We wanted to celebrate with mom so she knew that we love and care about her. I didn’t quite have the energy to host anything at my house this year. So we decided to keep it simple and take her to dinner to her favorite restaurant. You guessed it: Outback Steakhouse. It’s not a big place, so we kept the group to a minimum and invited those family members who are closest to us (in proximity as well as in our everyday lives). My dad, siblings and a few Aunts and Uncles who go that extra mile for mom came to celebrate with us.

When we arrived, dad went inside to check-in (we called ahead to get our name on the waiting list); they gave him a pager and he returned outside where we stood in the cool breeze and chatted with one another. Mom, however, was very concerned with everyone’s standing around when she was ready to go inside and eat. She kept urging everyone to come inside so we could sit down to eat. We tried to explain to her about the pager and that we had indeed checked in; we were simply waiting outside because there was more space and fresh air. She could not understand the concept.

“I don’t know why everyone won’t come in now, I’m hungry! I don’t want to eat severely late!”

Eventually, she marched right inside that restaurant, agitated that we were all seemingly hanging around and ignoring her pleas to be seated. I followed after her to find her approaching a hostess.

“We need to sit down now, we have so many people here too. We have 14 people here and we need to sit down now.”

They began asking if her name had been put on the list and I interjected, stating that we had already checked in and, in fact, had a pager. Mom was still insistent, however, that we be seated. The hostess looked at mom, then back at me, in a bit of confusion. I quietly whispered that mom has dementia and didn’t quite understand what we meant by the pager/waiting list. The hostess nodded, smiled and assured mom we would be seated shortly and welcomed her to have a seat inside.

Mom took a seat inside, still complaining that everyone else was outside and they needed to come inside. I sat beside mom and tried to distract her from the waiting game.

“How has your birthday been? Did anybody call you?”

Mom thought for a minute and noted the people who did-and even more so, the people who DIDN’T- call or send cards. She was concerned about her siblings who had not yet made contact with her on her special day.

After several minutes of chit chat, mom announced that she had to go to the bathroom. I pointed her in the direction of the ladies room and soon after she left, my dad came inside to let me know that her brother was going to call her to wish her a happy birthday (and to make sure she answered her phone). Mom returned from the bathroom with her phone to her ear, her hand cupped around the speaker of the phone as if she was on a very secret call. I had to chuckle at the sight of it.


As soon as we were seated, the waitress came to order our drinks and mom tried to speak over everyone to order her food. We explained to her that she was only ordering drinks and the waitress asked mom what she would like to drink. Mom shook her head,

“No I already have my drink,” mom said, pointing to her can of Diet Root Beer that she had brought in. She continued to try and order her food and when the waitress was finally ready to take our order, mom was the first to speak over everyone to tell the waitress what she wanted. She also made sure that she knew the reason we were there.

“And also I wanted to tell you that it’s my birthday today so if you could please bring me one of those things, like when we came here for her birthday” (pointing to my Aunt) “they brought her that thing too for her birthday, birthday thing…I think it was that…ice cream…stuff for birthdays, so if you could bring that too please,” mom ordered, waving her hand around the table as she spoke. We all laughed and the waitress chuckled (we had clued her in to mom’s condition to prevent any confusion at mom’s behavior).

Mom ordered her favorite dish,

“The meat stuff that’s cut up, kind of smaller pieces…”

Translation: Baby back ribs with french fries. She polished off those ribs faster than you could blink!!


Mom opened cards and presents with a smile on her face. She was so excited that my Aunt had bought her an Outback gift card. She waved it in front of my dad, declaring,

“We can use this to pay for our food tonight!”

Dad reminded her to say thank you, and she complied-just like a child.

The best part of our night came at dessert time. Mom was SO enthusiastic about the hot fudge brownie sundae that was brought to her and she wanted everyone to partake of the deliciousness. She asked each and every person, individually, if they would like to please try her dessert. If one objected, she frowned and looked genuinely hurt as she said,

“What? You don’t want any? But why not? It’s so delicious!”

Then on to the next person,

“Cassandra do you want to try? Do you want a bite? It’s so delicious, it’s so good. Try it, will you take a bite and try it?”

I took the spoon that she was waving in front of my face and gave an exaggerated response,

“Mmm, it’s so good mom. Thank you.”

Down the line she went until finally she could no longer reach her guests at the end of the table. She then stood up, calling down to my Aunt at the end and pleading with her to try her dessert as she waved her plate and spoon overhead.

ice cream bday

“It’s okay Deana, I ordered my own dessert,” Aunt Sharon replied, holding back her laughter.

“Huh? You want to try it? It’s so delicious, it’s so yummy, will you try it?”

As we all giggled, Aunt Sharon finally gave in to mom’s pleading and took a bite of her dessert.

“Mmm, that’s very good Deana. Thank you,” Aunt Sharon said, graciously.

We were all laughing quite a bit. What a sight to see! After mom had shared her dessert with all who would accept, she sat down and stirred up what was left of the brownie, hot fudge and ice cream, making it into a soup. She ate just about every bite until she was finally too full to eat any more.

Afterwards, we went outside to take a family photo. From the left: myself, my twin brother, Joe, mom, my sister, Christina, and my dad.

family 2

Happy 52nd Birthday to mom. I’m sure that this was never what she envisioned 52 to look like. It’s sad to think about how young mom was when all of this began and hard to think about and wonder how many birthdays we have left with her. For now, we live in the moment and I’m glad that we were able to take her out for her special day.

Thursday, May 9, 2013

“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.