Recess, or Something Like That

Mom complains a lot about never getting to leave the nursing home during every one of my visits. I'm not exactly sure what she means, because the Activities director at her facility, provides opportunities for the residents to travel to restaurants, the bowling alley and even the occasional trip to Wal-Mart to shop.

So once again I crawl into the mind of someone with Alzheimer's Disease and try my best to understand what my fragile mom might really be trying to tell me. For the past year she's been living at the nursing home and has not been back to our home. She left our house (thinking she would return), was hospitalized with dehydration, sent to skilled nursing facility to recover, and then on to her current domicile. During all of that time I've not taken Joan out of the nursing home - no visits to home or other places she enjoys because our car is simply too difficult for her to get in and out of. And, her social worker fears that it will be difficult to get her to go back to the nursing home if she come home, even for a visit (since she has penchant for wandering).

So, I came up with the idea that perhaps I could pay someone to provide field trip outings for Joan. It's the best and brightest idea I've had in quite a while. Before Joan went into the hospital, her early morning care was provided to her by the most wonderful caregiver in the whole world by the name of Donna! Donna took care of Mother for the 18 months prior to being hospitalized. She came to our house every morning from 7:00am - 9:00am, faithfully getting Mother ready for her day at the National Church Residence Day Care Center. This freed me up to get ready for work and arrive a bit less stressed than I arrived during the previous two years (this includes Larry who also handled a "lion's share" of responsibility for Mom.)

What can I say about Donna so you might understand how important she's been to our family:

• She provided a service to us worth much more than the salary she was provided with
• She was dependable and tidy and never missed a beat making Joan's bed, cooking breakfast and cleaning up afterwards
• She put up with a lot from my mom every morning, including enduring multiple wardrobe changes (often snatching things and putting them back into the closet when Joan's back was turned or she was showering so she was limited to one choice)
• She helped Joan with accessorizing, including putting on Joan's earrings, bracelets and necklaces
• She was kind and generous (almost to a fault) to Joan (don't think I didn't see all of those bracelets, etc. that you hand-made for my mother so she would have a red accessory to wear with her red outfit!)
• She became Joan's best friend and advocate - I could often hear the two of them laughing out-loud
• She is/was intuitive to Joan's health needs
• Her presence allowed Larry and I lead a normal life from 7-9 a.m.
• She became a part of the fabric of our family
• What's not to love?

After careful consideration of recent "next steps" for Mother, it only made sense to hire her to be the one to take Joan on her occasional "private" field trips. Just Joan and Donna, with attention 100% on Joan. The first trip was to get ice cream, the second trip to Wendy's for their strawberry/spinach salad and a large lemonade.

I can't worry or wonder if Joan will remember her field-trips (which she probably won't after a day or a week), but what I can be assured of is that she is safe with Donna and that the time they have together will bring my mother joy during those hours.

Please stop thinking that you have to do it all for your family member with Alzheimer's; please, please give yourself a break whenever possible; please look for help outside of yourself; and please consider the person you are caregiver/advocate for. There are things they still enjoy doing. Be creative, think hard, and provide experiences and opportunities for your loved one to enjoy daily life, no matter their boundaries or constraints.

Does mom still complain about being cooped up - you guessed it, the answer is yes. But, am I doing my best to provide opportunities for her to get out and about - YOU BETCHA! As long as my mother still has the ability to do so, I want her to get up and get out! And, that my friends, brings me a great deal of satisfaction!

The Longing of Her Heart

Proverbs 13:12 (NIV) – “Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.”

Those who know me know that I work hard to model my life after the (Holy) Scriptures. Those who don’t know me, if you follow my posts long enough, you’ll soon learn that about me <smile> Today’s post is centered on my opening words from the Bible.

I’ve fretted over the past few months every time I visit with mom. For over six months now, we’ve had the same conversation. This past week was no different. As I walked into her room, there was evidence once again that she was hoping to go home. Family portraits were stacked neatly on her dresser top. Clothing was stacked in a pile on her bed. She had removed from her walls the precious pictures made by budding artists, aka her great-grandchildren.

She was at dinner when I entered her room. My countenance fell as I was struck once again by the reality that mom wanted to go home, and I had to be the bad-guy who would once again tell her that ‘this is your new home’ (at the Nursing Home). Silently, I played the script in my head. Mom starts with, “I’m so glad I’m going home today.” Me, with great caution, “No, you are already home.” Joan (mom) shouts, “what? I don’t want to live here, why can’t I go home?” Me (Cindy) gently, “Because it isn’t safe for you there anymore.” Joan groaning defensively, “But, I can walk, I can talk, I can do everything by myself.” Cindy sadly, “I know you can and I’m so proud of you!”

Often over the past few weeks, I’ve wondered why this conversation wounds me so. Then it stuck me. Even with Alzheimer’s, there’s a hope deep within Mother’s spirit that she will once again be able to do the things she once did - that she will gather around our home table for a meal, at which she will be normal and whole again.

I can’t fulfill the longing of her heart. I feel so helpless. But, we serve a God who knows our needs, both mine and Joan’s. He cares for us like no earthly being can. He gives us ideas to help those we love, even when we are hopeless.

In my next post, I’ll share the idea I’ve stumbled upon. It’s not “home”, but it’s a chance for mom to feel somewhat normal and keep all of us from drowning in “hope deferred.” Stay tuned…

Caregiver Burn Out (it's real)

As a child, we were often warned not to get too close to the fire or it would burn us. Our mothers shouted, "DON'T TOUCH THAT STOVE, or you will burn yourself!" The funny thing is, many of us continued to get closer to the campfire and/or the stove just to see what it would be like. What we found was that fire really is hot and it really does burn, especially our hands, feet or other extremities that we place near it.

When I was 10, I decided it would be a good idea to light a match and then douse it by dropping it into a glass full of gasoline. What was even worse was that I was doing this on the workbench in the garage. The same garage our family car was parked in. When my mother found out what I was doing, she ran out, grabbed a 2x4 and didn't know whether to hit me or the flames! The fire somehow went out before there was severe damage to the garage, me or the car. My guardian angel was certainly looking out for me that day!

Some of us still don't learn our lesson, even when we're in our 50's and 60's. This "sandwich generation" of ours doesn't have a manual or process for being a caregiver, so we do it all. We take care of our houses, our jobs, our husbands, our children, our elderly parents and now even our grandchildren. We're living longer because of terrific medical care, and working harder for fear we will run out of money before we die. We lend money to our kids because they are in a tight spot. Many times we give our parents money to help pay their medical bills and prescriptions. STOP, DON'T TOUCH THAT FIRE!

Eventually, we find ourselves at the bottom of the totem pole, holding the world on our shoulders. Why? Who told us we have to do this? Who told us it is our responsibility to care for everyone else? We can't keep going this way spending time and money and emotion as though it were endless. We need to step back from the fire before we get burned. We need to take care of ourselves before we reach a boiling point and explode. We need to stop throwing grease into the hot skillet, and turn down the dials on this pressure cooker we call our lives.

Caregiver Burn Out is real. How do I know? Because I've experienced it. Somewhere, somehow along the way, I lost my way and over-extended caring for my loved one. With the help of my husband, a fantastic counselor, my work and church community, I learned I had reached my own boiling point. I was fried and crispy like a KFC chicken leg. I was good for nothing or no one, not even myself.

Before you reach your boiling point, listen to those around you. They are your red flag, your fire extinguisher. Don't keep looking in the other direction for the fire hose. You've already been hit by it, and you don't even know it. Ask for professional help for yourself and your loved ones in need. Take the hand that is reaching out to you, and thank God that there are people in your life who truly care about you

Step back from the fire before you get burned. You can't dodge the flames forever if you keep standing too close. Reach for the one (God) who promises you won't get burned if you trust in Him.

Isaiah 43:2New International Version (NIV)

When you pass through the waters,
    I will be with you;
and when you pass through the rivers,
    they will not sweep over you.
When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.

The Sun Goddess Confronts Sundowning

All I needed to do was Google Sundowners in order to find exactly what I was looking for.

Do you find yourself Googling to identify a disease to go along with your symptoms? For example, when you have a fever of 102, chills and no appetite, do you surmise that you're coming down with a bad case of the flu? Do you believe everything you're reading on the internet? If we take a step back and allow ourselves to read a bit further, we may also find that a fever, chills and no appetite might apply to at least 40 or 50 other conditions and diseases! Crazy isn't it that we continue to stick to our own conclusions until a medical professional either validates or blows apart our precious theory?

I reacted the same way when it came to my mom's Alzheimer's diagnosis, until I could no longer fight what the professionals were saying. I was seeing the symptoms, and the changes I saw were much more than a fever and chills. What about Alzheimer's disease? Its symptoms and descriptive behaviors are as numerous as the folks suffering from this awful disease. No wonder we caregivers and advocates live in the land of confusion as we try desperately to pick apart the evidence staring us face on. One moment we hope, and the next moment our hopes are dashed.

Recently, Mother's moods were running from high to low and back again, all in a matter of hours. I wondered what was causing this when a friend shared with me that she might be sun downing. I smiled, thinking, oh, how appropriate for someone who's spent her entire adult life as a sun-worshipper.

I reached into the symptoms of sundowning, also known as Sundowner's Syndrome. It seems to occur in the late afternoon or early evening and, according to the Sundowner's Facts website, and can include increased confusion, disorientation, agitation, anger, depression, restlessness, paranoia and rapid mood changes. Well, I declare! That certainly explained the swing in my mother's recent moods. The symptoms are often more severe and pronounced, and almost always worsen as the sun goes down and natural daylight fades.



People pay big money to have a tan like Joan!

Mother has always hated the winter and usually isn't comfortable when the sun goes down. As the seemingly long winter of 2014/15 drags along, so does Mother's restlessness. New, bad behaviors arise such as temper tantrums, or not using her indoor voice to proclaim, "I want to go home" and at meal times shouting, "I didn't order this food" (when actually the staff brought her exactly what she ordered).
Last summer I received a call from her care center. They were concerned that Mother was spending too much time in the court yard sunning herself. They asked me if they should bring her inside or put some sun-screen on her. I replied that she had spent every waking minute on sunny days for the past 70 years sun tanning and never using sunscreen! No need to change anything now.

Personally, I can't wait until daylight ebbs longer and the sunlight gets warmer. I can't even imagine how much the "sun goddess" inside of Joan longs to thrive again. I'm convinced that spring and summer is exactly what the doctor would order for Sundowning, if only he could write a prescription for it.


Short, but Sweet

My momma always said, "Life was like a box of chocolates. You never know what you're gonna get." ~ Forrest Gump

This morning, I woke up startled from a nightmare/dream that seemed so very real. Mother was standing beside my bed offering me a piece of her favorite chocolate, pecan turtles. She was loving and kind and when I asked her why she wasn’t at her care facility, she sweetly told me that she had just walked out the front door, took a ride with a nice man, stole a box of her favorite chocolates from the local grocery store, and then walked to my house.

As I cleared the cobwebs from my foggy brain, I wasn’t sure whether to be horrified or delighted at what I had just experienced! (or dreamed I'd just experienced!)

Our minds are a funny thing, even for those of us who are not living daily with the confusion of Alzheimer’s. We Advocates and Caregivers never truly rest, our loved ones always on our minds. We toss and turn with the ravages of this disease. We too seek respite from the wake of its devastation.

Maybe it was a dream or some wishful thinking that manifested itself into a dream. But, for now, I can smile, remembering that mother’s favorite chocolates are what she would offer me if she were to walk through my back door, into my bedroom, and reach down lovingly to offer me a piece while I'm sleeping.

Devil or Angel?

I enjoy watching cartoons that portray someone with a devil (equipped with horn and spiked tail) on their one shoulder, and an angel (adorned in white with shiny halo) on their other shoulder. Maybe that's because today I'm identifying with those cartoon characters (more specifically today, the red one.)

I wish life were as simplistic in message as a cartoon, but life is more complex than that. I have days when I don't want to be near my loved one with AD (pitchfork armed and ready to fire) and other days when it's okay no matter how the visit goes (halo shinning and straight). The thing that stinks most about this disease is that one minute you're riding through rainbows, then suddenly your trajectory rides straight into the dark abyss. Never steady, never predictable, always outside of your control.

Right now the devil is whispering more loudly into my ear. Judge me if you must, but until you can relate to me with your empathy gene, you won't really understand my feelings. And, I don't judge you if you're a bit disappointed in me. My prayer is that you'll never need to experience this disease. My prayer is that there will soon be a cure, and none of us need live this disease or watch those we love suffer from this disease.

There's a popular saying, "hate the sin, not the sinner." Today I'm saying, "hate Alzheimer's, not your loved one."

If you have a loved one with Alzheimer's or other forms of dementia, or have ever experienced the devastation of these diseases, you can relate. I'd love to hear your comments, whether you're feeling good or evil today.

There's No Place Like Home...There's No Place Like Home

The majority of us are familiar with the Wizard of Oz, that 1939 classic movie where Dorothy and Toto meet the Lion, the Tin Man and the Scarecrow shortly after being ejected from their home during a Kansas tornado. On Dorothy's journey she sees things that are interesting, intriguing and beautiful. On the other hand, she's often met with frightening, dark and ugly creatures. Eventually, she and her new-found friends meander their way down the yellow brick road to meet the Wizard who wasn't really cracked up to be what everyone promised! All Dorothy really wanted was to go home. She'd enjoyed her adventure, but could not wait to be back at home again. She was willing to endure fear and sacrifice anything in order to be home again.


For the past eight weeks, that's the way it's been with Mother. "I just want to go home!" she repeats over and over again, while slamming her fists on her chair or nearby table. Every visit, I leave feeling guilty that I cannot bring her home. What she can't seem to grasp is that we simply don't have the stamina or resources to make sure she receives 24/7 safety and care. The facility where she is now takes very good care of her. At least 15-20 professionals oversee Joan's needs every day. After nearly 10 years of caregiving, it's now an impossible task for Larry and me, being only an army of two.

During a visit this week with Joan and me, her granddaughter and her great-grandchildren, she made her request known to them ("I just want to go home!"). I once again told the little white lie that all family members and care partners tell to their loved one with dementia - "I'm sorry, you can't go home until the doctor says so." At that exact moment she got up, said I'm going to find a doctor, and stormed out of her room. What was I to do? Let her go, that's what. My daughter and I smiled at each other knowing she would never find a doctor to tell her what she wanted to hear. Darn it if she didn't come back to the room with a professional wearing a white lab coat! (Who preceded to tell her she cannot go home, and that she was there for safety reasons).

What is that instinct within us that longs for home? I've read that abused children long to return to the parent who's been abusing them rather than to stay in a foster home. I read more recently that even if we were to take our memory-impaired, loved one to the home they lived in before they went to live at the full-time in a care facility, it would not be the home they are envisioning. More often than not, people with dementia and other forms of memory loss are longing to go to their childhood home, a place where they felt safe and loved 60 or 70 years ago.

Joan really loves her place at Darby Glenn often commenting that everyone here knows me, everyone loves my place, I like the meals, and all of the people here are really nice. Then there are other days when she complains about the food, her laundry and clients who bother her (all of us can identify with Joan on some level here, don't you think? We all have bad days).

Toto, I have a feeling mom knows full good and well that she's not in Kansas anymore, but even if I clicked my ruby red shoes together three times, I still can't make the Alzheimer's go away. Most days I need to seek the Lion for added courage, the Tin Man for a brain to process this all, a Scarecrow who teaches me to not lose heart, and most importantly of all, I need to find the Wizard who will soon discover a cure for this tumultuous disease called Alzheimer's!