Dementia, Wandering and the Holidays

Why is wandering a concern during the holidays?

Caregivers should be especially alert to the possibility of wandering during the holidays.  If you are traveling with someone with dementia, be aware that the change in routine and environment can increase confusion.  People with dementia trying to go home may become lost if they become separated from their loved on while traveling. Considering bringing an extra person with you if you are traveling with a loved one, so there is always someone accompanying the person with dementia at rest stops.   Also, large celebrations at home may be overwhelming to a person with dementia. Be aware that people might leave when others are busy or distracted. You may want to consider putting alarms on your doors so that you will hear people coming and going. Cold weather always makes wandering especially concerning, as the person with dementia may not dress appropriately for the weather.  

When do I need to start worrying about wandering?

Wandering is a serious concern when you are caring for someone with dementia.  Six out of ten people with dementia will eventually wander. We are often asked when it is time to take measures to prevent wandering.  If you starting to have concerns about this, it is probably time.

Why do people wander?

Wandering is often a part of dementia because of the disorientation and confusion that come with the disease.  People do not recognize their surroundings or may believe it is an earlier time in their life when they need to go to work or care for young children.  People with dementia have trouble with the time of day and may believe it is time to get up when it is really the middle of the night. People with dementia may become frightened when they no longer recognize the family members who live with them and may leave the home to get away or to try to find their way back to a place they remember.  

Tips to prevent wandering:

Wandering can happen even if you are the most diligent of caregivers. Use the following strategies to help lower the chances.

  • Identify the most likely times of day that wandering may occur.
    Plan activities at that time. Activities and exercise can reduce anxiety, agitation and restlessness.
     
  • Reassure the person if he or he feels lost, abandoned or disoriented.
    If the person with dementia wants to leave to “go home” or “go to work,” reassure the person that they do not need to leave right away.  Try to refrain from arguing or contradicting the person. You might want to say, “Your boss called and you don’t have to go in today.” Or, “we’ll go visit your mother tomorrow.  Right now we’re about to have dinner.” Or, “We are staying here tonight. We are safe and I’ll be with you. We can go home in the morning after a good night’s rest.”
     
  • Avoid busy places that are confusing and can cause disorientation.
    This could be at shopping malls, grocery stores or other busy venues.  During the holidays, you may consider scaling back on large celebrations that might be too much for the person with dementia.
     
  • Place locks out of the line of sight.
    Install either high or low on exterior doors, and consider placing slide bolts at the top or bottom.
     
  • Camouflage doors and door knobs.
    Camouflage doors by painting them the same color as the walls, or cover them with removable curtains or screens. Cover knobs with cloth the same color as the door or use childproof knobs.
     
  • Use devices that signal when a door or window is opened.
    This can be as simple as a bell placed above a door or as sophisticated as an electronic home alarm.
     
  • Keep car keys out of sight.
    A person with dementia may drive off and be at risk of potential harm to themselves or others.
     
  • If night wandering is a problem…
    Make sure the person has restricted fluids two hours before bedtime and has gone to the bathroom just before bed. Also, use night lights throughout the home.
  • Provide supervision.
    Never lock the person with dementia in at home alone or leave him or

If your loved one is missing and is in a vehicle in Illinois, Law Enforcement can enter them in the Silver Search program  You can see information about that here: http://www.silversearchillinois.org/

From Pain to Piano: A Song for Caregivers

 

“I hope that this song- or anthem- is one that will draw out conversation with family members to speak about what may be going on in a family. This four-minute musical piece will wash over the tired, weary caregiver who might be in need of extra encouragement on their way to work,” said Julie Sparks, a Lombard resident who wrote the song titled,“Anymore”, as an anthem for caregivers.

Caregiving has always come naturally for Julie.

“I am a full-time caregiver for my mom and also helped take care of my dad and my aunt until they both passed away. I have absorbed all the emotions surrounding important medical decisions, the frustration of people that just don’t get the importance of normalcy in an otherwise unpredictable world of person living with Alzheimer’s, the avoidance or denial of a loved one not ready to accept the real facts of what is going on during the diagnosis phase, the pain that is shared the first time a loved one can’t recall who their adult child is, or when someone is having a challenging day and you have tried everything you can think of to soothe a troubled resident who can’t articulate the fear, the longing, or what they need.”  

When it came time to write the song, Julie drew inspiration from her own experiences. Not only was she a caregiver to family members but has also worked on advocating for seniors for about 10 years. Julie checks in with residents every Monday and works to comfort them.

“The amount of people that are strangers to them in a place that is now their home, but not their home yet- is so hard for them,” Julie said. “Every person has a story, talents, fears, and hopefully loved ones that want to see their loved one thrive and get settled in. This transition is impossible if they are not surrounded by people with a heart and passion for the senior community.”

When asked how the idea of the song came about, Julie claims that it “evolved from the first line as a day in the life of a caregiver, and the cry that sometimes goes unheard of understood by many…that just because someone can’t communicate verbally or physically move as they did in their 40’s or 50’s, and cognitively keep up in card game or conversation. This doesn’t void out who they were or more importantly to where they once belonged.”  

Though this may seem like only a song to some, Julie hopes caregivers find comfort in her lyrics.

“This song is important because the world needs hope and more songs that inspire people to not give up. They need to bring hope and healing and package that in a song that educates as well- is needed for such a time as this.”

Julie took her pain to a piano as a way to give hope to caregivers everywhere.

“I’m so happy that I was able to poetically paint a picture of a day in the life of a caregiver and the cared for.  I think it when a song can uplift and help families talk about the important topic of the cognitive health of our parents. The circle of life is revealed in a tender way. My mom is all I have left. I dedicate this song to her and hope that I am able to look back on her ending years and know I gave my all to be her advocate, as she was for me when I was growing up.”

Julie wants other caregivers to remember one very important thing: “never underestimate the power of touch, talk, and simple gestures of communication to someone living with Alzheimer’s.”

To hear Julie Sparks’ song “Anymore” visit http://bit.ly/2qzmVWC.

Why I Give: Lincoln’s Lemonade Stand

On Tuesday, November 27, people across the nation will come together to make a difference in the world around them. Giving Tuesday is a special call to action which creates a national “day of giving” around the annual shopping and spending season. We encourage you to take part and do a little big thing for Alzheimer’s care and support in Illinois. Your tax-deductible gift helps fund our free programs and services for the 220,000 Illinois residents living with Alzheimer’s disease and the more than 590,000 Alzheimer’s caregivers. In this article, we feature Mary Jane Davis, whose grandson, Lincoln, gives to the Alzheimer’s Association Illinois Chapter to honor and remember Mary Jane’s father.

Our Story

My father, Lincoln’s great-grandfather, was a wonderful man.  He was a hard worker, loved his family and loved life in general.  He retired at age 65 but continued to work long into his 70s. He always took care of us and helped others in the community when the need arose and he had the ability to do so. He loved to garden and gave away the extra produce he harvested from his big garden, the “truck patch”, as he called it, and was always willing to help someone change a tire, start their car, clear away snow or whatever the need might have been in our small town.

In 2006, mom noticed some lapses of memory.  He would go to the grocery store with a list and return much later with only a few items, none that happened to be on the list.  The gentleman that he worked for part-time noticed that he wasn’t completing the tasks he was assigned.  As is the case in many families, mom said nothing to us about the changes – hoping it was just a part of aging.  We lived about 140 miles away from my parents, and when we visited he seemed fine initially. As time went on, it became evident that something was wrong. His official diagnosis of Alzheimer’s was made in 2007.  Mom made many changes at home to keep him safe, removing the knobs from the stove and oven and disconnecting the microwave to keep him safe.  He lost his ability to work and drive, but continued to do chores around the house with some direction.  Mom was determined to keep him at home and we were able to get a home health aide 3 days a week to assist with dad’s personal care and help mom around the house.

As the disease progressed, he could feed himself most days and walk with some assistance – but other than that he could do nothing for himself. Other than the Alzheimer’s, dad was in pretty good health.  Mom took very good care of him, but we saw the exhaustion and worry very apparent in her.  She was diligent in trying to keep things as normal as possible for him at home and vowed not to put him in long-term care.  In December of 2013, he was hospitalized with pneumonia and congestive heart failure. Even though he recovered, he was very weak and it became clear he would need to go to a facility for rehab.  He entered a long-term care facility on January 3, 2013 and he passed away there on December 10, 2014 at the age of 89.  We visited often and mom was there most days.  In spite of the memory loss, his temperament remained the same. The staff loved him and he came to love them.  Every visit ended with him saying “I don’t know why I can’t go home” and a difficult explanation to try to help him understand.  He knew us most visits but would always greet mom with “There’s my wife, she’s the best wife in the world!” 

Even though it was so difficult to see this life-altering disease rob dad of so many great memories, we were blessed in many ways.  He was happily confused and remembered mom to the end.  We were also blessed to celebrate their 65th wedding anniversary in June of 2014, and had a holiday celebration with all the family in attendance two weeks before he passed. The nursing center provided wonderful care and transported him to the family events.  What a gift!

The Lemonade Stand

We are blessed to have our three grandchildren visit us for a week during this past summer.  The lemonade stand dates back to the summer of 2011.  Our granddaughters were eight and five at the time. They had lost their paternal grandfather earlier that year to metastatic lung cancer.  Our daughter and son-in-law have a very strong faith as does the entire family and the girls were raised from a very early age to have a servant’s heart.  As a result of their grandfather’s untimely death, they wanted to do something to raise money for the cancer society and come up with the idea of a lemonade stand.  My husband, their grandfather, is a very gifted craftsman and built a lemonade stand for the girls to use when they arrived.  We opened the lemonade stand one afternoon during their summer visit and they raised $65 for The American Cancer Society.  It was a very proud moment for us all.

Fast forward seven years and the lemonade stand was resurrected for another great cause.  Our grandson, Lincoln, has seen pictures of the lemonade stand and the lemonade stand itself in storage over the past couple of years. He loved his great-grandfather, calling him grandpa, and visited him with his family whenever he could.  He loved to sit on dad’s lap and they would play with some of the interactive toys and games we had purchased for dad.  When we visited him in the nursing home, Lincoln liked to push him in the wheelchair.  When he talked about wanting to sell lemonade he said he wanted to do it for “people who lost their memories like grandpa did”.  When Lincoln came to visit us, he helped set up the lemonade stand and helped squeeze lemons to make the lemonade.  His sister made the flyers and we took them around to people in the neighborhood.  The lemonade stand raised $110.00 for the Alzheimer’s Association.

Lincoln told us in his own words that he “did it so people who lose their memories could be happy and feel better and remember their memories.  The money will help do things to make people like grandpa feel better.  Other people should do what I did so people like grandpa remember.  I did this because God teaches us to help people and love them and the Bible tells us that.  It makes me feel good to help people.”

We donate to the Alzheimer’s Association because we personally witnessed this life draining disease in dad and the battle that mom fought every day to care for him and keep him with us. I also am blessed to volunteer at Apostolic Christian Restmor in Morton and encounter people every day with various stages of this mind-crippling disease.  It is so obvious that the need is great to raise money for care improvement whether that be pharmacologically or personal care and to support research for the development of a cure.  If this little six-year-old boy with such a big heart can raise that much money in a few hours selling lemonade, just think what can be done in other small ways or on a much larger scale to have an impact. My prayer is that through this association, individuals and families can be spared the pain and loss resulting from this terrible disease

 

By: Mary Jane Davis

National Family Caregivers Month: David’s Story

Hello, my name is David Myers and I am the primary caregiver for my wife, Cheryl.  Cheryl was diagnosed with Alzheimer’s disease in 2012 after a couple of years of not knowing what was happening to her. The trouble with the diagnosis was that Cheryl was only 47, and dementia wasn’t even considered until things got really bad.

There are issues when your spouse can’t function alone and the family’s world is turned upside down. Cheryl was ok to live by herself for about 18 months after the diagnosis, but we lived in the country and I worked 30 minutes from where we lived. So we sold our dream home and moved to a smaller home in town where I could get to Cheryl quickly if need be.

I had ADT come in and install alarms if doors or windows were opened and they provided a camera so that I could watch to see what she was doing while I was at work.  I didn’t realize the stress I was carrying until my mom offered to stay with Cheryl.  My parents only live 40 minutes away and I start work at 6:30 a.m., so mom would come over on Sunday night and live with us. She took care of Cheryl during the day while I worked, and then stayed overnight so that she didn’t have to drive back to our house the next day. Mom did this for over a year until we were able to hire personal assistants to take care of Cheryl while I worked.

A long time ago, when our children were little (we have two – Kara who is married to Ryan and lives in Indianapolis and Kevin who lives in West Chester, Pennsylvania), we were told that raising a child takes a village. Being a caregiver takes a village as well. We have relied heavily on our church family who has provided over 400 meals, lots of visits and volunteer time to sit with Cheryl – allowing me to get some windshield therapy. (Windshield therapy = going for a motorcycle ride to enjoy the freedom of not having anyone needing you for an hour or two).

I would like to say that hiring the assistants solved all of our problems, but in my opinion, nobody could take care of Cheryl like I could. I struggled with allowing someone to come in and care for her, and it took several months for me to let someone else to care for her in ways that I couldn’t. I had no idea that I was a control freak, but the longer we are on this journey the more I realize that I want things a certain way, and I like to have things go my way. Things stopped going my way in July of 2012 when a nurse said to me: “I am so sorry for what you are about to go through”.

The nurse was trying to tell me that it was going to get worse before it got better (if it really ever does). You see, I married the woman of my dreams. Cheryl and I met at church camp where we both worked for the summer. Long story short, we fell in love and married after I graduated from college. We truly had the perfect marriage. You may be wondering why this is important… Well, I have had several people tell me that they probably wouldn’t be able to do what I do for her. I don’t understand this way of thinking because I made two promises the day I married her.  I promised her that we would be together in sickness and in health until death do us part. When I made that promise, I meant it. I may have only been 22 years old, but I knew what it meant to make a promise – and that is what I am doing. The second promise I made was to a man that loved Cheryl more than a father could. He leaned into my ear in the receiving line and said: “you better take care of her.” I remember that day like it was yesterday, and I am doing everything I can to keep that promise to him.

I have done many things to keep Cheryl comfortable and happy through this journey we’re on together. If you told me before the kinds of things I’d have to do for her, I would have said I couldn’t do it. But I did do them, and I have overcome things that I would’ve struggled to do for anyone else. After 31 years, I truly believe that there is nothing I wouldn’t do for her.

For those people who are on the front end of the diagnosis, let me share a few things that I have learned both through my experiences and from others observations of our journey.

  • Laughter truly is the best medicine.  Find the things that make you smile because there will be several things that make you sad, angry, confused, emotional and lonely.
  • People will always ask “How are you?”  You will have about five seconds to determine if this is a generic question where “fine” will work or if they want to know how you are really doing.  You need to be ready to answer people when they ask the question. If you are not prepared you might tell an executive about Cheryl’s bowel movements before you realize what you are saying because that is what is on your mind and end up sharing way too much.
  • Friends will ask “what can we do for you?”, “what do you need?”, and “are you taking care of yourself?”
    • I struggle with these questions. I am the one that takes care of my family, and now that I am on this journey. I have realized that I can’t do this on my own.
    • Asking for help is a problem I have. I believe it is called pride. You know when this started happening; I truly believed I had so many tokens of help.  Each time someone gave me help one of the tokens was taken out of the jar. Since I don’t know how long this journey is I was afraid I would run out of tokens. Guess what?  We are in year six and there are still tokens in the jar and our church, friends and family are still asking these questions.
    • I still struggle with asking for help, but there is a website that the Alzheimer’s Association provides called “Lotsa Helping Hands” that allows me to post things I need help with and it goes out to everyone who at one time or another has asked one of these questions. We named our page Cheryl’s Helping Hands.
  • Everyone (including myself) wants to know what the prognosis is. This is the answer I seek every day. When I talk to others who have been on this journey or are on this journey now, I compare their story with mine and try and figure out just where Cheryl is and how much time we still have together. Hospice came in three months ago and her decline is more obvious now. Hospice has been awesome at taking some of the caring responsibility away and tracking her progression. They are the partner I was looking for during this journey.  They can’t tell me what I want to know because no one can, but they are now on this journey with me and are helping me make the decisions that I was putting off because no one was holding me accountable.
  • When will she stop knowing who you are?  This is what everyone thinks about when they hear about Alzheimer’s.  I was so afraid of the day when she would not know who I was.  That day came and went so quickly, but people still ask. My answer has always been: “I don’t know if she knows me or not but she trusts me.”  And I know that this is still true to this day because she allows me to do everything for her without any pushback.
  • Crying is ok! Purging your emotions is better than keeping them inside.
  • What will this do to you financially?  I don’t know. I prepared for the worst and hoped for the best.  There are not a lot of options for someone her age that has Alzheimer’s.  It is extremely difficult because I have to work full time, but I have found help. Early on, I worried about the financials, now I worry how to say goodbye.
  • Why Cheryl?  Why Us? Why Me?   I don’t know, but I have a feeling that I am supposed to take what I am learning and share with others.  My Lord promises in 2 Corinthians 1:3-5 that He will come alongside us when we go through hard times, and before you know it, He brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.

I will close my story with the things I wish I knew about at the beginning of the Alzheimer’s journey:

  1. The medication will cause weight gain and does not cure Alzheimer’s.  Nothing does.
  2. Tell people what is happening.
  3. The Alzheimer’s Association is a huge help.
  4. Get involved in a support group as soon as you can.
  5. Don’t keep it in; tell people what is going on.
  6. Be honest with yourself and your friends.
  7. This is not about you, but it affects you in every aspect.
  8. Your friends want to help but don’t know how.  Allow them to help and think of ways to allow them to support you.  You will need them.
  9. It is going to get worse.
  10. There is no cure. (Yet!)
  11. Find something you love to do and find time to do it.
  12. Most everybody has been touched by Alzheimer’s. Let them tell you their story.

Ask a Care Consultant: Holidays and dementia

The holidays can be a challenging time for families coping with dementia. Planning ahead and knowing what to expect can make this time less stressful. It’s also important to adjust your expectations—don’t try to put too much on yourself or on the person with dementia.

Planning ahead 
Communication is key here. If you have people coming in from out of town you may need to clearly communicate with them regarding your caregiving situation, and what the person with dementia is and is not capable of. In the early stages of dementia, your loved one may seem to not have changed very much, but may have trouble with large groups or following a conversation. Telling visitors ahead of time that they can help by being patient, and not interrupting or correcting the person with dementia, will help prevent frustration and hurt feelings.

If the person with dementia is in the later or middle stages, there may be significant changes since the last time the visitors saw him or her. These changes can be difficult to accept, and it can be helpful to prepare the visitors in advance so that they know what to expect. For example, if the person with dementia might not recognize them it can be less hurtful if they understand in advance that this is a part of the disease process.

Don’t take on too much 
Holidays can be stressful even without the added responsibility of being a caregiver. Do not be afraid of scaling back your celebration, and delegate, delegate, delegate. Clear communication is key here, as well. Consider scheduling a conference call with other family members to divide up responsibilities, and to set appropriate boundaries on what you can and cannot do. Consider scaling back to a smaller celebration to avoid overwhelming yourself and the person with dementia.

Focus on meaning 
Look for ways to involve your loved one in meaningful activities that they can enjoy. Singing along with holiday songs can allow people even in the later stages to connect and feel part of the holiday. Looking through photo albums of past holidays and reminiscing with your loved one can be a soothing and meaningful way to spend time together. Perhaps they can help set the table or tie the ribbons on the gifts. Look for ways that your loved one can be a part of the celebration by scaling down activities to a level that is manageable for them.

Celebrating in a facility 
When a family member is in a residential facility, people often want to know if it is a good idea to bring them home for the holidays. Consider carefully if this is wise for you and for the person with dementia. Sometimes changes in routine can be upsetting for the person with dementia, and they may not do well in a crowd of noisy people. Think about joining your loved one at the facility in their holiday celebration.

Take care of yourself 
Be realistic about what you can and cannot do during this stressful time. Caregivers often feel guilty that they are not “doing enough” for the person with dementia and for their families. Holidays can make these feelings even harder to deal with when we have so many expectations about how things are supposed to be. Try to let go of these expectations, and give yourself some quiet time to grieve if you need to. As much as you can, focus on the moments of connection and happiness that you share with all your family members, and give yourself permission to not do it all.