A Day of Thanksgiving

Today was a very special day as we hosted a Thanksgiving dinner for our Memory Care Residents and their families. There were many smiles, a few tears and lots of good memories made. It gave us all a chance to see the love of family as each Resident hosted their family on this special day. Talk turned to memories of Thanksgiving past, children being small now grown, loved ones who are no longer here to share the day and more. 

Appetites were hearty as we all enjoyed the turkey, stuffing, pumpkin pie and more. Residents who often struggle to sit and enjoy a whole meal were relaxed and smiling. Conversation flowed as freely as the food. No one seemed rushed or anxious. Family photos were taken and shared on cell phones. It was almost an odd sight to see the traditional dinner and the sight of the cell phones, but it made it possible for family members to join us from afar. 

It was my honor to read a poem I had written as we did our annual Candlelighting Ceremony in honor of all those living with dementia. There was such a stillness in the room as we all took a few moments to honor the living and remember those who are gone. I am so thankful to know and love these Residents and their families. I truly cherish the moments I get to spend with them. It was easy to thank our families for allowing us to share in their journey as we care for their loved ones. It truly was a day of thanks giving!

The Feeling of Love

I was helping with lunch when one of the ladies said "you sure work hard making everyone feel loved!" I paused for a moment to think about what she said. I do reach out to touch each person, make eye contact and smile. I try to reassure the anxious ones that everything will be ok. I give hugs, back rubs and sing a song or two. I often sit with my residents and chat while we are waiting to be served. 

Am I working hard? Not at all. I am just doing what comes naturally to me. I let my residents know I care about them. I let them know that I enjoy our conversations and we chat even when their words no longer make sense to most people. I find I can still understand the emotions behind their words. I let them know that I need their hugs. I let them know that they are important. Would I want any less if I were in their shoes? 

I will cherish Miss B's words for a long time to come. I hope I can make her and all the others feel loved each day that I am with them. 

All is not lost...

So often I see people acting like someone with dementia is already gone. They will often no longer look them in the eyes, touch becomes less frequent, and conversation diminishes. Does this happen because the disease takes people away or because we no longer look at them in the same way any longer?

I love seeing a light come into someone's eyes when I can connect with her or him. I always get close so we can make eye contact. I usually touch the person, often holding their hand as we look deep into each other's eyes. I begin a conversation, hoping the person will join in. This may be with words, a smile, or a squeeze of my hand. It doesn't really matter to me how we connect...it's more important that we connect. I will often sing an old familiar song which often brings a soft voice singing with me. It may not be all the words, but the music is there. The person is still there. We just have to reach them.

It seems to me that we give up trying to connect. When Mom can't remember the grandchildren or that Dad died 5 years ago, we often begin to pull away. As we pull away we watch our loved one retreat deeper into their own world where they live in memories. That's why they often tell us that Aunt Esther and Uncle Ed stopped by today. We begin to think they surely must have lost their mind because Aunt Esther died 25 years ago and Uncle Ed passed 10 years ago. How can Mom possibly believe that she saw them...she has to be crazy, right?

But the pages of our memories often flutter as we relive times in our lives. Some days we may be remembering long ago. Other days it may be on a more recent page of memories. We can help them to enjoy these fleeting memories just by letting them open up and talk about Aunt Esther or Uncle Ed. You might even hear some wonderful families stories that you never knew. Don't worry if the facts aren't perfect. This is not a history class...this is about the feelings! And just remember...All is not lost, it's just temporarily forgotten to be remembered another day.

Dementia knocks

 When dementia comes knocking

Our world starts rocking

It comes to both young and old

It creeps in or races in so bold

It takes over our dreams

Scaring us it seems

Dementia can be a frightening place

We need love and support to run this race

Arms up and Reaching out

Sometimes a whisper

Sometimes a shout

Why can't they hear me?

Don't they see?

What would you do

If it happened to you? 

By Sandy Whelan 

Dementia with Dignity: I Hope You Dance

Dementia with Dignity: I Hope You Dance: Dave was younger than most of our other residents. He had been found wandering and very confused. After a brief hospital stay, he came to ...

I Hope You Dance

Dave was younger than most of our other residents. He had been found wandering and very confused. After a brief hospital stay, he came to live with us.  Many of the staff were frightened by him because he could become very angry when upset. I think his anger came from his lack of control after being placed in a long term care facility for his own safety. He was a very active gentleman who liked to be in charge. He also had been a career Army man and was used to being in control of a situation. One of the first things I learned about Dave was that he was a gentleman. He knew how to show respect, but you had to earn it. He often used rather salty language, but I would just gently remind him that I was lady and I knew he didn't talk to ladies like that. I think that gentle reminder helped him to gain control of his emotions, and he would always apologize with sincerity.

Dave loved music and dancing. Almost every day after lunch, we would turn on the music and share a dance together. He was an excellent dancer, much better than I was with my two left feet. He never once complained as I stumbled through our dance. He smiled and would often sing along with the music. He stood taller as we were transported to another time with the music. I could see the man he used to be...the man he still was when dementia let him. Music was the only activity he ever seemed interested in. He shared his love of music and dancing with anyone who was willing to join him. I don't know whatever became of Dave after he left our facility; but Dave,
if you are out there somewhere...I hope you dance!

Rita's Daughter

Rita was a wonderful lady who had a twinkle in her eye and a zest for life. She was a tiny lady, barely 5 feet tall. You never saw her without a smile on her face. She loved music and would dance any time she could.

Rita was already living in our memory care neighborhood when I first began working there. Her face lit up when we first met. She was so excited to see me, and I soon discovered the reason. Rita began to introduce me as her daughter to everyone we met. As we would walk to activities, she would stop staff and say "have you met my daughter?" She was so proud to have her daughter visiting her. It was very obvious that she loved her daughter very much. Sometimes staff would ask if I was really her daughter. Rita was quick to tell them “yes, she’s my daughter.” Never once did I tell her that I was not her daughter. Why would I want to take that joy away from her?

I often wondered did I look like her daughter? Did I sound like her daughter? What was it about me that felt so familiar and comfortable to her? I know I certainly loved her like a daughter would. There was always a hug waiting for me, and she always asked about the family. What more could I ask for? Her daughter lived out of town, but her son and daughter-in-law visited daily. We became good friends as the years went by. I think they were happy that Rita had someone who loved her when they weren't able to be there.

As Rita declined in health from her dementia, I did finally have an opportunity to meet her daughter Cheryl. I shared happy stories of my time with Rita. I looked hard to see the similarities between Cheryl and I. I didn't think we looked alike, and our mannerisms were not similar in my eyes. But for whatever reason, Rita thought we were both her daughter. I know this was probably difficult for Cheryl. I took comfort in knowing that I filled that hole in the heart for Rita when her daughter could not be there. The love I felt from Rita was a gift that I will always treasure. I hope her family was able to take some comfort in knowing that I loved their mom and was proud to be her "daughter."

Jo and the Music

Jo was an accomplished artist and was the most elegant lady I had ever met. She was in the latter stages of dementia when I first met her. There was such a quiet grace about her that I longed to know more about her. She seldom spoke now, but her smile was so beautiful. Her brilliant blue eyes would look deeply into mine-almost as if she could see to the depths of my soul. Jo was always there when I began a group activity. She sat quietly as I asked my trivia questions or reminisced about days gone by. She would smile when I spoke directly to her, but she remained silent. One of my favorite things was sing-alongs with the residents. We sang the old songs that they remembered from church or school. When we forgot the words we would just hum until we remembered the words again. One evening we were singing "God Bless America" when I heard a wonderful soprano voice. I looked over to see Jo with a lovely smile singing along. She had perfect pitch and didn't miss a note. From that moment we never had a sing-along without singing "God Bless America."

Dementia with Dignity: I'm Already Dead...

Dementia with Dignity: I'm Already Dead...: Becky was sitting at a table with other residents who have very late stage dementia and are mostly non-verbal. I quietly asked the staff if ...

Wandering or Lost?

Often we talk about wandering when someone has dementia. What does wandering mean to you? Many families say that Mom/Dad doesn't wander. They've never wandered away from the house. They may go outside, but they never wander. Families may go on to say that Dad/Mom does get lost sometimes when going to the store (or other places), but never wander.

So is it the very word "wander" that is preventing us from keeping our seniors safe? How often have you seen on the news of a senior being lost? Often the outcome can be devastating for a family, especially during the extreme winter weather we have had this year. We need to have an honest discussion about what is happening during these unfortunate events. I believe most of these seniors left home with a purpose. They left to go to the store, a neighbor's house, the library, church of some other place with meaning to them. Unfortunately, something happened before they arrived at their destination. They got lost! They were not able to recall where they were going, or maybe could not recall how to get there. So they kept driving...or walking. Pretty soon, they were no longer able to recognize where they were. Instead of stopping to ask for help, they continue on their journey. Families begin to realize that their loved one is now missing. The police are contacted, an alert is issued and the search begins. Hopefully the missing senior will be located quickly before any tragedy occurs, but too often we read where the person has been found frozen to death, drowned in a creek or other body of water, or fallen with major injuries. What can we do to prevent these tragedies?

One of the simplest solutions is to invest in a simple GPS monitoring system. These are available through many companies as well as the Alzheimer's Foundation. The GPS can be worn as a bracelet or around the neck. Some of them also have an alert button and can detect falls.  If your loved one leaves homes, you can contact the monitoring company and they can very quickly locate him/her. Some of these systems can even notify you if your loved one leaves a designated area. This can allow your person to maintain his independence and keep him safe. The systems do require a monthly monitoring fee which is about the cost of a soda or candy bar per day.  And the peace of mind these systems can provide is priceless.

I'm Already Dead...

Becky was sitting at a table with other residents who have very late stage dementia and are mostly non-verbal. I quietly asked the staff if she wouldn't enjoy sitting at a table with someone she could talk to. The aide said "she needs to be fed now." Becky overheard us and said "they think I'm already dead." This nearly broke my heart. What must be going on in her mind if she believes we all "think she's dead"? I assured her that I don't think she's dead and I am glad she is still here. Her face brightened as I talked to her. The glow came back to her eyes. She told me she loved me.  I am not sure why she needs to be fed...I think we need to look deeper at the true issues here.

How sad that we negate their very being when people have dementia. I can only begin to imagine how it feels when you don't matter to people anymore. Becky is such an elegant lady and enjoys people so much. How can we no longer see her as a person? She still converses well...initiates conversation...and has a warm smile with a twinkle in her eyes. If staff treats her this way, how do they feel about the others...the ones who don't speak....the ones in the Geri-chairs....the ones with no family to notice? How we treat the "least" of us really shows our true colors.

Would you....

Would you be my side when I am frightened...
Would you hold my hand in the dark...
Would you comfort me with love....
Would you be patient when I try to get myself ready....
Would you help me sing my favorite song....
Would you watch my favorite show with me for the 100th time....
Would you answer my question even though I've already asked 10 times before....
Would you be kind....
Would you be my friend....
These are the things I did as for you as a child....
Won't you do the same for me as dementia robs me of who I used to be..

It's the Martians!

I was visiting with a family member on our memory care neighborhood when one of our ladies began calling to me. I walked over to see what she needed. She said "who do you think you are waltzing in here without paying?". I apologized and told her I didn't know I needed to pay. So she tells me if I am not going to pay I just need to leave. I apologize again, telling her I don't have any money. I asked how much it cost and if she could put it on my bill. She said it's a dollar, but if you're not going to pay you just need to go on and get out of here while pointing vigorously at the door. I asked if I could pay tomorrow and she reluctantly agreed telling me she would be waiting for $2!

Now for the really funny part....are you ready? I was introducing myself to a new resident telling her I am a friend of her niece Marcia. From behind me I hear the first lady say in a really loud voice "Did you hear what she said? She said she's a Martian!" Well now I know what my Halloween costume is going to be. I love my memory care people!!!

Through Their Eyes

Have you ever seen the fear in their eyes? Or maybe today it is just that confused look in their eyes. I was chatting with a friend today when I was reminded of what drew me to dementia care in the first place.

I can't explain it until I tell my own story. I have had anxiety disorder and panic attacks for as long as I can remember. There have been some pretty rough times, and I was even home bound with agoraphobia at one time. But those days are long gone, although I still have panic attacks at times and still have anxiety, it no longer consumes me. I used to ask "why me."  I just wanted to be normal! 

Then my world changed when I began to work in long term care. After a couple of years I was asked to work on our memory care neighborhood. I tried everything under the sun to get out of taking that job. The very thought of being behind locked doors scared me to death. I couldn't do this...there was no way! Well I went anyway. 

I had 32 residents to provide with activities and social services. They were at all different stages of dementia. What was I going to do? Then a magic thing happened. I was able to see the fear in their eyes....I could feel how frightened they were. I saw them change when someone reached out to them and really connected with them. I saw that they loved to laugh, sing and dance! I saw that they accepted you just as you are...with no judgements and no expectations! I loved each and every one of my 32 residents. They filled my heart with joy every single day. I no longer asked "why me" because now I knew. My life journey brought me there so I could see and feel their fear. My anxiety was my gift...it opened up a world I didn't even know existed!

Baby, it's cold outside!

The weather is bitterly cold here in Indiana. It doesn't take long in this kind of weather for frostbite, hypothermia or even death to occur in the elderly. I have seen several reports of people who have wandered from their homes. What are you doing to protect your loved ones? There are many things you can do to create a safer environment to prevent wandering. 

1. Be aware that wandering is a possibility. And be prepared. If they have wandered once, they will wander again.

2. Put alarms on all exterior doors to alert you that the door has been opened. 

3. Get a motion sensor alarm to put above the bedroom door to alert you if your person leaves the room at night.

4. Use a baby monitor when you are in a different room so you can hear if anything is amiss.

5. Get a GPS system to help you locate your loved one quickly if they should leave home. Some of the life alert systems have a GPS built in and can be set to alert you if they go farther than a certain distance from home.

6. Even for seniors who do not have dementia they are at risk with the extreme cold weather. Please call and check on the seniors in your life. Make sure they have heat. Check in regularly. N

Let's keep our seniors safe. They depend on us! #dementia, #Alzheimer's

It's All About the Papers!

Now that you have made the commitment to take charge of your loved one's care or your life, let's get down to the real nitty-gritty. There are several things you will need to make your task much simpler. One of the best ways to organize all the pieces of paper you are going to need to track is just a simple 3 ring notebook. Yes...one like we used in school way back when. I would choose a notebook in a bright color so that it will stand out making it easier to find in case of an emergency. Get some dividers and protective sleeves, and we are ready to begin!

First let's talk about documents (or copies) you will need to keep:

1. Copies of both front and back of Medicare and any other insurance cards. You need the backside copied too because it will have all of the contact information you will need. Also include a copy of the Social Security card.
2. Power of Attorney (POA) papers. Yes, it is important to have a durable Power of Attorney. This will allow you to make medical decisions, handle banking, and more. Please consult an attorney to ensure that you have the correct paperwork in place. 
3. Living Will, if there is one. This allows you to know your loved ones wishes regarding feeding tubes, ventilators, and CPR status. 
4. Copies of any long term care policies.
5. Copy of any military discharge papers in case your person may qualify for VA benefits.
6. Information on bank accounts (account numbers, which bank, stocks, bonds and other financial information)
7. Current medication list with dosages and administration times. 
8. List of physicians and their phone numbers and addresses.
9. The name, address and phone number of the attorney who wrote the will or will be handling the estate.
10. Name, address and phone number of the preferred funeral home. This is a good time to clarify if the funeral has been pre-planned.
11. Any other important phone numbers or contact information for minister, distant family members, or others you may need to contact in an emergency.
12. You may have other documents such as a birth certificate or marriage license that you would like to keep here too. 

Place all of your documents in the protective sleeves and file them in your binder. This will keep them all together in a place that is readily accessible. The first 4 items you will need in the event of hospitalization or if your loved one goes to a rehab or long-term care facility. Having this binder will save you a lot of headaches and stress. There is nothing like trying to find where Grandma put her insurance cards when you are in the middle of an emergency!

Take Charge!

As the new year starts, it's time to take charge! What does that mean to you? Maybe it's time to take charge of your own health and well-being...put yourself first for a change. Or maybe it's time to step in and take charge for your loved one living with dementia.

• Begin my making a list to get organized.
•  Do you know the medications your loved one takes? Are they taking them as prescribed?
• Which doctors do they routinely see?
• List their ongoing medical issues. 
• Make notes to take with you to the next doctor's appointment.
• Be sure to note any changes you have observed including any new or worsening behavior.
• You might want to alert the doctor prior to the scheduled appointment of any concerns you have. 
• Do you need a life alert system? Some of these even come with a GPS monitoring system to help you locate someone if they should wander away from home.
• Organize your army. By this I mean get your support system in place. Don't rely on people knowing what you need. Give them specific jobs or tasks to help with. 
• Keep your sense of humor. Laughter will get you through some really tough spots.
• Evaluate the driving safety of your loved one. The confusion of dementia can lead to major problems while driving. Have a doctor help with the evaluation if necessary. 

Now that you have some tips to get started, take some time to relax. How about a glass of wine and a warm relaxing bath...

Enjoying the Moment!

Enjoying the Moment!

We have opportunities every day to make the ordinary extraordinary. This can happen when we take time to be "in the moment". Sometimes we get so wrapped up in work, worries, and more that we forget to enjoy life. We become overwhelmed by the responsibilities of being a caregiver...whether we are caring for our children or caring for a senior with dementia. We all know the tremendous amount of work and worry that goes in to both of those jobs.

What would happen if you let go of those reins you hold so tightly and just let loose for a while? Would the world come to an end? Some of the most fun I have had is looking at the world through the eyes of my grandchildren and the seniors I work with. They both look at things from a completely different perspective. Have you ever taken a walk with a four year old? You have to slow down to see the beautifully colored butterfly floating by, or that rock with the fascinating fossils, or the wondrous shapes hidden in the clouds! For the four year old, each one of these things is brand new and magical. My seniors are the same way...they find joy in the moment! I think they often looks at things as magical because they know it could be the last time they get to see or enjoy whatever it is. It may be something beautiful or it could be something as simple as the laughter of a child or a puppy visiting our building. It may be a visit from a family member they haven't seen for a long time.

Think about the wonder of bubbles glimmering in the summer breeze. It is something so simple,,,practically free, but the colors floating on the bubbles, the suspended breath as you wait to see if the bubble pops or if it goes higher until it is out of sight, seeing how large a bubble you can make before it pops, trying to catch it again on the bubble wand. The possibilities in those bubbles are endless...because you are enjoying the moment!

Think about the smell of cookies baking. They don't even have to be made from scratch anymore. You can buy them pre-made and just spread them on the cookie sheet and bake. Then as you open that oven, the wonderful aroma of warm cookies overwhelms you...your mouth starts to water...you can't wait to have that first bite while the cookies are still warm and soft. You are enjoying the moment!

Remember grandma's button box and how much you enjoyed looking at all those different buttons, imagining what kind of dress or shirt they might have been on. I always loved the feel of running my fingers through those buttons and the kind of musty smell of that old button box. Do grandma's even have button boxes any more? Well, they should because there is magic in those boxes!

These are just a few examples of enjoying the moment. Why don't you and your person with dementia take a little time to find your own moments to enjoy? See what wonders you will find and what memories will surface. You just might be surprised when you enjoy the moment. Let me know how it feels!

Chuck and the Car Lot

Chuck came to live with us after his family decided he could no longer live alone. His wife had passed away a few years ago. He had been lonely in his home, so he quickly made friends with other residents. He was tall and quite a gentleman. He soon noticed Kate. She was cute as a button with her hair in a bun and her dresses with all the pearl buttons. Kate reminded me of Aunt Bea from the Andy Griffith show. Chuck and Kate seemed to always be together...often holding hands as they walked. Chuck began talking about marrying Kate and getting a place of their own.

Our dining room overlooked our employee parking lot. Chuck often commented on the variety of cars in the lot. He thought I owned the car lot and must be selling a lot of cars. Nearly every day he would stop by to ask about buying one of the cars. He wanted to get a car so he and Kate could get married. Of course, they would need a car if they were going to move to their own place. I didn't have the heart to tell him that none of the cars were for sale, so I would tell him the sales manager was at lunch or had gone for the day. This answer always seemed to satisfy him, and he would go on about his day. He would stop at my desk the next day, and my answer would always be the same. He was able to walk away with his dream and his dignity intact. Chuck and Kate are both gone now, but I still smile every time I think about Chuck and the car lot.