Next week I will be volunteering with the Shoals Walk to End Alzheimer’s. My team is walking in memory of my mom and to honor the many beautiful people I have met that have this disease. This is a terminal disease. You lose skills in the reverse order of how you acquired them.
I walk because there is no cure. The funds raised will be applied to research for a cure.
I walk to help create awareness. For every person with this disease there is at least one caregiver making sacrifices each and every day. These caregivers need support emotionally, physically, spiritually and financially. They give up hobbies, jobs, vacations, social activities and income to name a few. They all too often sit inside of their homes in isolation. The golden years they worked so long to reach have turned into shattered dreams.
Today I am sharing the words of two dear friends. One is a young mother of three. She shared these words a few weeks after the birth of her third child.
“The power of a hand…..when I was laying on the table during c-section and there was a lot of pain because Josiah’s head was so large, I was trying to stay calm and not panic. One of the nurses held my hand and you wouldn’t believe what that hand did for me! I didn’t know this nurse, but the strength of her grip sent peace and calm coursing through me. Today, Josiah was screaming while getting his diaper changed. Emily climbed up on her stool and held his hand. He immediately calmed down and looked into her eyes. The power of personal touch, the power of a hand cannot be underestimated. How much more powerful is the hand of God!!? How could we possibly be afraid when we have a God who holds onto our hand?!”
There will be times that a sensitive friend will reach for your hand and pour love into your life with the reassurance of their support. You may offer your hand to your loved one to reassure them that they are not alone. At all times the hand of God holds onto each of our hands.
Personal touch is often forsaken when people visit. Make an effort to reassure the person with dementia when sitting together. Something as simple as massaging lotion into their hands brings peace and calm. Sometimes just holding their hand as they fall asleep brings comfort to both of you.
The other is a friend I met years ago. She and I have laughed, cried, prayed and held each other’s hand through many circumstances. She sent the song posted today to me.
Word for Today
For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you. Isaiah 41:13
Song for Today
Prayer for Today
Dear God,
I thank you for sending people with hearts of compassion into my life. They are your hands extended to me when I need a personal touch or listening ear.
Teach me to be the hands of God as I reach out to the ones who need to feel your comfort and love. Teach me to trust that you always hold on to me and I have nothing to fear because I am in your hands.
Last evening I was reminded of a story about a man who visited his wife every morning at 9:00 am for breakfast at her assisted living. A friend asked him why he still did this since she no longer remembered him. His response was, “I still know her”.
This is a beautiful example of remaining connected with a loved one with Alzheimer’s disease. You can still share meals and enjoy just being together. My father faithfully visited my mother every day that it was possible. When he had a knee replacement surgery and was in a rehab center, his motivation to get out was to be able to visit my mom. I rolled his wheelchair into her room and stepped back to watch them for a few minutes. Even though mom couldn’t respond as she would in the past, it was like watching a young couple in love. Tears slid down my face as I watched them.
Some people may not be able to understand the daily visits. Others may even need a slight reprieve after years of caregiving. Know that whatever you decide is right for you. It is your decision made from concern and after much thought. There is a lot of guilt attached to simply having to move someone from their home. Don’t hold onto that guilt. Work through it and move on to making the most of the time you do spend together.
Look for things you both enjoy whether that be watching a movie. reading to them, listening to favorite music. working puzzles or taking a walk. You can share stories from the past without them having to acknowledge remembering them.
I actually admire the generation that goes before me. They have relationships that have endured great times and tough times. Life was lived without a mask of social media to hide behind. Face to face interactions occurred between family and friends. Tears rolled down our faces when we hurt. Tears rolled down our faces when we laughed heartily. No emojis were needed.
In real life relationships we create a savings account of emotions. As we invest in each other, we create large accounts of love that withdrawals can be made from. This allows us to provide the care that is so critical. Sometimes the relationship has been a rough one and the account of love is running low to begin with. These are the times that we must rely on God’s vast amount of love to flow through us and enable us to still show compassion and kindness.
There will be a time when they know longer remember you but you still know them. They still need you and to be reminded that you love them. Friends and family may not understand. That’s alright. You keep visiting and keep remembering.
Don’t let their silence or lack of interest keep you away. Don’t allow emotional pain to keep you away. Don’t allow pressing matters to override taking time for them. A young chaplain was leaving a nursing home late one evening when he heard someone gently sobbing. He turned back to find a woman gently crying. He took her hand and asked her what was wrong. She struggled to find and express the right word. He waited by her side. Then she stammered, “lonely”. He pulled up a chair and held her hand until she fell asleep. It changed his approach to visits forever. Let it change yours as well.
Word for Today
“The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8
Song for Today
Prayer for Today
Dear God,
We come to you humbled today. Forgive us for always having an agenda of selfishness. Help us to have eyes open to the lonely and broken. When others cannot remember us, it is our responsibility to remember them.
Jesus told us that when we did things to the least of the people, we did it to him. Help to love as He loved.
Personalities change when a person has Alzheimer’s. I have seen a harsh person become as gentle as a lamb. I have seen a meek person become an angry bear. What we must remember is that these changes are all a part of the disease.
Frustration occurs when a person feels overwhelmed or loses control. Confusion is one of the leading causes of aggression. Imagine entering a world where your mind can no longer process sights and sounds as it used to. Imagine knowing what you want and not being able to express it correctly. Imagine being removed from your home and waking up in a strange place with a stranger removing your clothes and placing you in a shower. You might become angry and aggressive in those situations. I know I most likely would.
Since we know anger and aggression occur, we must watch for triggers that set this behavior off and learn to manage it when it happens. These skills will make life smoother and relieve tension in the home.
First we will look at possible triggers. Look for the cause of distress. Here are some possible causes:
need to toilet
pain
over stimulated (noise and activity)
boredom
hunger
tired
too hot or too cold
change of caregiver
relocation
loss of time perception
inability to form new memories
Ways to handle anger and aggression are the responsibility of the caregiver. The person suffering from dementia has no control of their reactions. In fact, once the outburst is over they may not even remember it. Our first reaction is to correct or argue. This may have worked in the past but now those life skills must be tossed aside and new ones must be mastered.
You have to remain calm and use soothing tones. The person lives in Alzheimer’s world. In this world, they are always right. Arguing and reasoning only escalate their anger.
Here are some suggestions:
eliminate the source of confusion or frustration if possible
avoid physical contact
speak in a calm voice and control facial expressions (hide your anger and frustration)
Acknowledge their feelings (I know you are frustrated)
take a few moments apart if possible
alert your healthcare provider if you notice significant changes
keep a simple routine
I cannot emphasize enough that you must remember it is the disease speaking and not the one you care for. My own mother was always in control of her emotions and very stable. I never remember her losing control of her emotions. When the disease progressed she actually punched me and was very angry. After getting over the shock, I worked hard to acquire skills in redirection of behavior and learned to take a time out to breath and regroup when neccessary.
There will be rough days. If they ever become dangerously aggressive, call for emergency help. Inform them right away that the individual suffers from Alzheimer’s. Emergency workers are becoming more informed and better prepared to deal with dementia.
Please do not allow this post to scare you or bring pain. It is best to be informed and begin practicing these new skills before you need them. As my own mother’s disease progressed we did have to add some medications. These eased her anger and aggression. She was very calm and gentle in her final years.
Song for Today
Word for Today
When I said, “My foot is slipping,” your unfailing love, Lord, supported me. When anxiety was great within me, your consolation brought me joy. Psalm 94:18-19
Prayer for Today
Dear Heavenly Father,
It is so reassuring to know that you always hold on to me and you will never let go. On the days that are stormy please give me calm and peace to care for my loved one. Give me patience and insight as I navigate the outbursts of anger and frustration. Restore joy to me when I feel mine is depleted.
Help me to focus on the good days. Guide me as I strive to enrich their lives by still making heart connections.
I thank you for bringing peace to both of our souls today.
Caregiving has levels. You usually enter in and see gradual changes much like walking into the ocean. Gradually health deteriorates and you find yourself getting deeper and deeper. Before you realize it, you are swimming in demands for your time, energy and attention.
At other times things change rapidly due to an accident or sudden illness. Waves wash over you and it is all you can to to hold you and the one you care for above water. The caregiving for someone with Alzheimer’s or other related disorders never eases because of improvement or recovery. The demands and level of care only intensify.
To survive this level of caregiving you will have choices to make. One choice is to include family members and close friends. Each one will have a role to play. You must ask who is willing to help and how they can help.
Begin by thinking of the person needing care and yourself inside a circle. That circle is surrounded by a larger circle. Then they are other circles as you move out.
The caregiver in the inner circle is the primary caregiver. This person is usually the spouse or most responsible relative. You will provide most of the daily care.
The second ring of the circle holds the periodic caregiver. This is a family member or friend who provides support to the primary caregiver. They usually see the need and assist without having to be asked. They should make themselves available whenever help is needed.
Next you have the peripheral caregivers. These are people who make occasional visits. They may assist with specific needs when asked.
Finally, you include (or try to include) the passive caregivers. These are the family and friends who either are in denial or forget that you are shouldering a heavy load. I once heard them referred to as seagulls. They fly in, poop on all you are doing and then promptly fly away again. Share information with them when asked. Forgive when you feel they have neglected you and your loved one and seem uncaring. It isn’t worth letting these feelings fester and turn to bitterness. Accept that you are doing your best and try not to judge.
Once you know where the family members and friends line up in the circle, you may decide you have to enlist professional caregivers. These include trained and untrained care providers that you must pay.
Outside of this circle are options such as respite care and finally an assisted living or memory care unit. When you feel like you are sinking, let them be your lifeguard. There is no shame in making choices that allow you to survive.
Only those inside the first rings of the circle should help you make those tough decisions. It is wise to seek advice from clergy and physicians when you need it. You are strong and capable but you will need help.
Song for Today
Word for Today
Plans fail for lack of counsel,but with many advisers they succeed. Proverbs 15:22
Prayer for Today
Heavenly Father,
You know the circumstances I am in at this time. I humble myself and admit I cannot do this alone. I need you first and foremost as my counselor. Give me wisdom as to who I should include in my circle of care. Show me those who will stand beside me. You sent Aaron and Hur when Abraham grew weary and tired. I know that you will send the help I need as well.
I praise you for being my strength when I grow weary. Help me to accept that not everyone will meet my expectations. Forgive me when I forget this. Guard my heart from bitterness and anger.
This is not a post about house flipping or remodeling even though I have a few of those under my belt. That is another post for another day. Today we will be discussing what happens or should happen in this room. If you have ever potty trained a child you know the frustration in the beginning and the happy dance in the end. Unfortunately, as a caregiver for someone with Alzheimer’s there is no happy dance in the end. Keeping calm through the problems with urinary tract infections and incontinence can be challenging.
A piece of advice I offer all caregivers of those with dementia is always consider testing for urinary tract infections when there is a sudden behavior change. Thankfully, I had an experienced emergency room team when I had my first encounter with this. Anger and aggression from a usually passive person caused the assisted living to contact me. No one had informed me that uti’s often lead to this. Delirium can result in as little as one to two days.
The bacteria in the urine spreads to the bloodstream. When this crosses into the brain, confusion and other cognitive difficulties can happen. In a brain that is already compromised, this may be worsened.
There are other symptoms to clue you in. These include foul smelling urine and frequent needs to urinate. Under the advice of an experienced elder care nurse, I learned to avoid catheters with my father. He had urinary incontinence and was on lasix. Due to mild dementia from years of diabetes he didn’t always make it to the bathroom or feel the sensation we do. Her advice was to avoid catheters because they cause frequent urinary tract infections.
If you find yourself suspecting a uti, ask the doctor to test. Please convince them the patient does not need a foley catheter. If you hate them, just imagine being in pain and confusion and having this happen to you. You have to speak up as the advocate!
Hopefully you will never need this information but I am adding it if you do. Not all incontinent products are the same. Trial and error resulted in finding the brand and size that worked best for my dad. We settled on a brand that several nursing homes use. I then ordered them in bulk online to save money. In our situation we had to use overnight both day and night. Toileting every 2 hours helped. Order water proof chair pads and mattress protectors.
We used an adult version of the diaper genie to help with odor control. My husband enjoys hunting so he alerted me of a laundry product and room spray called Dead Down Wind. Don’t laugh. It works.
If you are a caregiver long enough you may face adult diapers. I was in a support meeting years ago and met two incredible women. They were both in their 80’s and the sole caregivers for their husbands. I smiled to myself when I heard them discuss how shaving cream helps clean dried poop off easily. The idea was planted in my brain and I saved it in case I ever needed it.
Now, how do I find a word for the day, song for the day and prayer for the day for this post? Hmm, this may require another cup of coffee and potty break.
Word for Today
Blessed are those who find wisdom, those who gain understanding, for she is more profitable than silver and yields better returns than gold. Proverbs 3:13-14
Song for Today
ok…I must confess. I was amazed at all of the potty training songs videos. My poor children didn’t have all of these fun videos and songs. I had to include just one to make you smile.
This song is a reminder that even when things get tough and the night is long our hope lives on!
Prayer for Today
Our heavenly Father,
You alone know the struggles we will face as caregivers. We ask that you give us wisdom to understand what our loved one needs. Watching them regress makes us aware of just how many life skills they lose. Help us to treat them with dignity and honor even when we must provide even the most basic of care such as with a babe.
When our hearts ache and long to have them as they once were we will cling to our hope in you that lives on. We praise you for this hope that helps us carry on.
As children we all knew recess as play time. As adults we tend to forget about how refreshing that break in our day was. My challenge to you as a caregiver is to make a list of what refreshes you and keep it handy for when you need it.
I will share part of my list:
listen to praise music
enjoy a cup of hot tea or coffee
jump in the pool
pick a bouquet of flowers
take a nap
dark chocolate
Go ahead. Grab a pen and start your list. When you are finished, do something on the list. You deserve a break today, so get up and get away. Please avoid the place your mind went to and grab a healthy snack instead though.
After one stressful week when my caregiving was long distance, I was exhausted. The drive back home was 6 hours that day because traffic was heavy. I pulled into an outlet shopping center to use the restroom and walk in a safe place. I noticed a vending machine and a massage chair in the restroom/refreshment area. I was so exhausted that I didn’t care what anyone else thought. This old girl dug in her purse for a few dollars, grabbed an ice cream sandwich from the vending machine, plopped into the massage chair and closed her eyes. Three minutes of bliss might have turned into three hours of bliss had I not run out of one dollar bills and was afraid of falling asleep.
Caregivers cannot afford luxury spas and have little time to enjoy such pleasures. It is important to carve out time to be refreshed though. You can not function as a caregiver without having a retreat to run to at times.
Find a symposium or conference for caregivers in your area if you can. Sometimes these are free for caregivers. If you happen to live in the northwest corner of Alabama there is one the first Friday in November. This year it is November 1st at Cross Point Church. The Walk to End Alzheimers in Florence is Sept 15th. Both are excellent places to meet other caregivers.
Time for recess! You need it my friend.
Word for Today
But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble. Psalm 59:16
Song for Today ( fun song reminding us of the hope God gives)
Prayer for Today
Our Heavenly Father,
Today we just pause to thank you for the hope you offer us. We are grateful for having your arms as a safe place to run to when we need a break. Refresh our hearts and souls so that we can carry out your work in a way to bring you glory.
Renew our strength. Restore our joy. Send us out again fueled with your love to pour out.
I have stressed the importance of having a plan. Personally, I function well that way. A friend of mine who was a caregiver reminded me of the importance of remaining flexible. The two go hand in hand. With Alzheimer’s you have to adjust each day. When you fail to do so, it can be painful.
When writing I sometimes allow thoughts to sit and simmer in draft form while I wordsmith and reflect. The thoughts above were driven home in a real way yesterday afternoon. My plan was to take my 6 month old German shepherd for a quick trip out to potty. When I tugged on his leash and said “let’s go”, he heard time for a ride in the utv. In his excited state he bolted in the opposite direction of where I was going. My flexibility was no match for his 65 pounds of energy. I am sitting here writing with my knee elevated due to the inflicted pain.
While consistent schedules are important for those with dementia, we must remain flexible. Bathing, dressing and preparing to go out can be similar to leaving the house with an infant or toddler. Incontinence occurs and you are right back in the bathroom starting over again.
My children liked to explore when we took walks. I usually allowed this. As a seasoned grandparent I saw these pauses as wonderful opportunities to join in on their curiosity. Stopping to smell the roses keeps harmony and peace. With the one you care for it is just as critical to slow down and let them enjoy the simple pleasures they still can.
Don’t allow the interruptions to your plans to become stumbling blocks. Take a deep breath and remind yourself that being flexible will make life easier for both of you. You may even find enjoyment in the change of plans.
If we are observant we can anticipate mood swings and avoid conflicts. This is a part of being flexible. Learn to read facial expressions and body language. This clues you in on whether your plans for the day need to be adjusted. As I mentioned in a previous post, an excellent book about learning these skills is Learning to Speak Alzheimer’s.
It is important to know your limitations though. When the tension becomes too intense even rubber bands snap. If you have ever had this happens, you know it stings. There is a breaking point when even flexibility requires some assistance. Don’t get there. Ask for help when you need it. There are people who just need to feel needed. Let them know you need them.
Change demands flexibility. When we embrace the changes through joy and pain it makes life smoother than resisting the change. Always remember that God is steadfast and even though we face changing situations, God’s faithfulness does not change.
Word for Today
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17
Song for Today
Prayer for Today
Dear Heavenly Father,
Some days when changes seem to turn everything upside down, I hold on to your faithfulness. Give me patience as I strive to be flexible. Forgive me for losing sight of what is truly important. Help me to remain calm when things become tense. Help me to trust that others can offer help.
I do praise you for your steadfast faithfulness even when I feel stretched to my limits. Hold me together and reassure me that You are here with us.
This is a big question all caregivers face. At some point you find yourself walking around with your brain in the fog. You long for understanding. You long to know if you are doing the right thing. You long to find balance. You long to know that things will someday get better.
In the beginning I only saw the progression of Alzheimer’s disease as it robbed me of the relationship I had with my mom. I missed having conversations with her. I missed walking into her home and seeing her cleaning everything in sight. I missed eating her home cooked meal. I missed what had been our “normal” since I was born.
Then one day I realized I was allowing the fact that it wouldn’t return to normal to rob me of joy. It could be better if I relinquished my ideas and began to celebrate what I had left of my mom. We rocked on the front porch. I took her shopping and out for ice cream. As she became more child like I got a glimpse into a more carefree person who loved cookies and being silly. `
With filters no longer blocking her actions and words, I discovered that she loved to hum when we were in the car. Her fear of what others might think had obviously prevented this in the past. Little moments of joy kept me believing it could get better.
The heartache of sitting by her bedside for days as I bid her a final goodbye left pain that made me ask again, “When will it get better?”. Accepting that mom was no longer in pain and completely healed caused my focus to shift. I accepted that my life had to continue. I made a playhouse for a granddaughter. I watched football each weekend with my dad until he joined Mom in heaven. Then I focused on remodeling their home so that they would have loved the way it looked before being sold.
There are now days that I miss them terribly but things have gotten better. God continues to be faithful to heal my heart. His faithfulness meets us on the days we are asking, “When will it get better?”. Trust that He sees beyond the fog we get lost in.
I am reminded of a flight I was on. My husband was kind enough to let me have the window seat. It had been cloudy when we began the flight. At one point our plane seemed to be sandwiched between two layers of clouds. Brilliant light bounced around as it reflected and it was one of the most beautiful sights I have ever seen. God will allow you to see beautiful things if you keep your focus on Him while waiting for things to get better.
Word for Today
For the word of the Lord is right and true; he is faithful in all he does. Psalm 33:4
Song for Today
Prayer for Today
Dear God,
You know me like no one does. You know my doubts, my fears, my weaknesses and my longing for things to get better. On the days that I don’t see your faithfulness please hold me close and know that I do still believe. I believe you are working and you have a plan for my life.
Thank you for not turning away when I have questions. Help me to trust you that things will get better even if your better is not what I had in mind.
Today’s post is actual a handout I put together after making several emergency and hospital trips with my parents. Things can happen fast and it helps to be prepared. Remaining calm while being strong can be exhausting. Hopefully this will help you.
Hospital Emergencies: What You Can Do Now
Planning ahead is key to making an unexpected or planned trip to the hospital easier for you and your care partner. Here is what you should do now.
Register your relative for a MedicAlert® + Alzheimer’s Association Safe Return® bracelet through your local Alzheimer’s Association chapter. People who are lost may be taken to an emergency room. This bracelet will speed up the process of reconnecting you with your care partner.
Know who you can depend on. You need a family member or trusted friend to stay with your care partner when he or she is admitted to the emergency room or hospital.
Have someone meet you at the hospital if possible so that one person can take care of the paperwork and the other can stay with your care partner.
Pack an Emergency Bag Containing the Following:
Personal Information Sheet
Create a document that includes the following information about your care partner:
Preferred name and language (some people may revert to native languages in late-stage Alzheimer’s disease)
Contact information for doctors, key family members, clergy and helpful friends (also program into cell phone, if applicable)
Insurance cards (include policy numbers and pre-authorization phone numbers)
Medicaid and/or Medicare cards
Durable Power of Attorney, Health Care Power of Attorney, Living Will and/or an original DNR (do not resuscitate) order
Supplies for the Care Partner
A change of clothing, toiletries and personal medications
Extra adult briefs (e.g., Depends), if usually worn. These may not be available in the emergency room if needed
Moist hand wipes such as Wet Ones; plastic bags for soiled clothing and/or adult briefs
Reassuring or comforting objects
Supplies for the Caregiver
A change of clothing, toiletries and personal medications
Pain medicine such as Advil, Tylenol or aspirin. A trip to the emergency room may take longer than you think. Stress can lead to a headache or other symptoms.
A pad of paper and pen to write down information and directions given to you by hospital staff. Keep a log of your care partner’s symptoms and problems. You may be asked the same questions by many people. Show them what you have written instead of repeating your answers.
A sealed snack such as a pack of crackers and a bottle of water or juice for you and your care partner. You may have to wait for quite a while.
A small amount of cash.
A note on the outside of the emergency bag to remind you to take your cell phone and charger with you.
By taking these steps in advance, you can reduce the stress and confusion that often accompany a hospital visit, particularly if the visit is an unplanned trip to the emergency room.
At the Emergency Room
A trip to the emergency room may fatigue or even frighten your care partner. There are some important things to remember:
Be patient. It could be a long wait if the reason for your visit is not life-threatening.
Offer physical and emotional comfort and verbal reassurance to your relative. Stay calm and positive. How you are feeling will get absorbed by others.
Realize that just because you do not see staff at work does not mean they are not working.
Be aware that emergency room staff often have limited training in Alzheimer’s or related dementia.
Do not leave the emergency room to go home without a follow-up plan. If you are sent home, make sure you have all instructions for follow-up care.
Hospital Stays
You are your loved one’s advocate…never leave them alone.
Establish a support team.
Communications – you alert one person who passes information on to others. Silence your phone if possible.
Line up relief persons to allow you to rest
Have someone bring you healthy snacks and drinks
Helpful Hints
Be polite with staff and they will appreciate you being there to assist.
Speak to doctors in the hall when possible.
Eliminate television if it is agitating to the patient.
Limit visitors.
Do not hesitate to ask questions.
Work with the social worker.
Watch for signs of pain and ask for medication if you sense it is needed.
Ask for a cot, pillow, blanket, etc.
Word for Today
But I will restore you to health and heal your wounds,’ declares the Lord,
Jeremiah 30:17
Song for Today
Prayer for Today
Heavenly Father,
Sometimes we find ourselves afraid and alone when crisis hits. We thank you for always being with us through the good days and the tough days. Help us to learn to trust you to walk with us even when we face uncertainty as caregivers. Give us strength and peace so we can make the important decisions that arise.
Order the steps of physicians and therapists who step in to provide care in emergencies. Show us how to be an effective advocate while remaining steady and full of grace.
Walking Them Home 