Caregiving can be a very lonely task. After all you spend hours or days with the person being cared for.
During this time family, friends and co-workers may not understand all of the strain and frustration you feel.
These groups are important because they provide an outlet of discussion with other likeminded individuals. These individuals are experiencing the same concerns and struggles and need to vent or talk through their problems.
However, there are groups where you can find support.
Are you looking for ideas for sensory stimulation with your loved one that has dementia?
Hand massages provides that personal touch and says I care
If you’re not sure what I mean, sensory stimulation uses the five senses of sight, touch, hearing, taste and feel to hopefully evoke positive emotions.
I’ve discussed numerous activities with music, but what are some others that can be completed?
Hand massage or shoulder massage—these are always a big hit when we do them in the nursing facility where I work. {touch}
Relaxation satchel—these don’t have to be fancy and if your loved one is higher functioning s/he can assist you in making them. We used clean new or clean socks and filled them about half full with rice. We then took drops of one essential oil {such as lavender}, added to the rice and mixed to spread the scent. We then tied the sock off. The sock could be used to provoke various memories or to calm an agitated loved one {especially if you use lavender}. {smell}
You can use a keyboard {or look them up online} to play various sounds and help your loved one recognize what they are. Some examples are a doorbell, train whistle, piano, car horn, etc. {listening}
Ice cream—this is a treat most people love and can evoke positive memories. Use the treat to reminisce. {taste}
Pictures—looking through pictures, reminiscing and discussing who each person in the picture is helps with memory recall {seeing}
ice cream prompts positive memories
Bubbles—many of my residents love the bubbles. They enjoy both watching them and trying to grab them and make them pop. This can be a lot of fun. {seeing, touch}
Flower arranging—the resident can look at the various flowers, sort them by color or type and smell the flowers. {seeing, touch, smell}
Herbal tea party—fix a cup of hot tea and honey, milk, or sugar as desired. Discuss the flavors found in the tea. {taste}
Shell discovery—hide shells in a small box or pail and have your loved one pick out different ones and discuss their differences. Even if it’s just how small or large they are this can be a fun activity. {touch}
Check out a DVD from the library of a place your loved one may have visited or lived in. Videos of scenery or animals are a great idea to discuss what s/he is seeing. You could also look at pictures of these places s/he has and listen to a CD of music or sounds from that place. {seeing, listening}
What are some sensory stimulation activities you have used?
Sundowning gets everything turned around as the sun goes down
If you have a loved one with dementia/Alzheimer’s you know that often sundowning is a common issue.
Sundowning is in the later afternoon and early evening, when the sun begins to set, and the individual becomes more agitates and frustrated. Often s/he wants to go home, yells, increased hallucinations, begins undressing, has increased confusion, etc.
So how do you deal with sundowning?
Turn the lights down and calm the loved one. Often turning on soft music will also help him/her to relax.
Keeping a track of triggers and what calms agitation is a great idea
On the reverse side, sometimes turning the lights on in the room being occupied helps the loved one.
Hold your loved ones hand and gently talk with him/her. Take the time to reassure him/her.
Take a walk—staying active is good for the body. Even if it is just a few steps or down the hall and back is good for your loved one. If s/he can’t walk and has a wheel chair, put your loved one around in the chair for a change of scenery.
Calming activities—find activities that are not stressful for your loved one and will keep him/her calm. Depending on the level of functioning, some activities such as reading and watching TV are stressful because they are difficult to follow.
Eat a lighter dinner—larger meals may be heavier on the digestion system or have more caffeine and/or alcohol. Enjoy these foods at lunch and have a lighter meal or snack in the evening.
Keep a daily journal—keep a journal of the daily activities and document triggers and behaviors that create agitation. By keeping track of this information you can identify the triggers and attempt to eliminate or change them.
Limiting sleep during the day to short 20 minute catnaps—this helps the internal body clock to not become so confused
Keep active—during the day keep your loved one active and develop more activities or outings for your loved one {depending on his/her ability}.
Talk to a doctor—most importantly discuss the issue with his/her doctor. Medication{s} may be a factor or could be prescribed to help with agitation and confusion.
Caregiving can be very stressful on the caregiver.
Caregivers need time to relax, unwind and have some “me” time. Balancing self-care is important.
Pamper yourself
What are some ways to do this?
Exercise—exercise is good for the body and also helps the mind. Exercise also helps to relieve stress. Take a walk, go to an exercise class, put in an exercise video, ride a bicycle, take a dance class, etc. Find something you enjoy doing and can do on a regular basis.
Pamper yourself—take time to pamper yourself whether it is a facial, massage, or mani/pedi.
Create personal space—if your loved one lives with you, find an area in your home that is just for you. An area where you can just rest and relax without the added worries and stress of caring for a household and family.
Make a list—write a list of things you would enjoy doing if you had the time. At least once a month try to pick one item to mark off your list.
Enjoy some music and go dancing
Schedule the time—schedule the time, make sure you have the time off and take the time for yourself. Even if it is an hour or few hours we all need time for ourselves.
Mini Vacations—arrange for a mini vacation. Take a weekend and get away with your husband or by yourself. Arrange to have someone cover the shift and go somewhere for a break. You can stay in town, go to a nearby retreat, or go a few hours away. If possible try to get away on a quarterly or bi-annually place to rejuvenate yourself.
Enjoy a hobby—find a hobby you enjoy and take time for the hobby. This can be anything from reading to gardening to knitting/crocheting to DIY projects to anything else you enjoy.
Music is always good to relax and unwind with. Put on some soothing music or go out dancing.
Develop a routine—find a routine that is best for your needs and circumstances. Find ways to implement time saving techniques into your day.
Journal—journaling your feelings, thoughts and emotions is a great way to express your feelings and be honest with yourself. You can also keep a thanksgiving or gratitude journal to remind yourself of what you are thankful for. On the more stressful days look back over the journal for a reminder.
How do you find me time amidst your caregiving obligations?
You can hire caregivers from an agency or on a freelance basis. Different individuals have different preferences. Personally, I prefer the freelance basis. That way if I don’t feel an assignment is a good fit, I have the choice to say no thank you and walk away.
Other people swear by hiring someone from an agency. You have to decide what you prefer. I know some families that have both freelancers and an agency.
There are pros and cons to either choice. Research your options to find the solution that will best fit your circumstances.
With an agency, caregivers are:
Licensed
Bonded
Insured
Often have workman’s compensation coverage
Backup care
My best piece of advice is to interview the caregiver and make sure the individual is a good fit with you {you will essentially be the one in charge}, the person being cared for and the overall situation.
When you interview a prospective caregiver make sure you:
Make sure the caregiver’s physical abilities match your needs
Caregiving can be very taxing and trying at times. There are times when you just need to get away and have “me” time.
There are numerous times when sacrifices have to be made and we as caregivers have to give up things we really want to do.
Take time to Cherish the moments
When these moments come, I remind myself to cherish the moments I have with my loved one. I remind myself that she is getting older and we will not have her forever.
This was driven home this past week with the passing of a very dear individual in my life. I thought about the times we spent together and how I wish I had more of those moments to just sit with him or to sing another song together.
I strive to remind myself to cherish these moments when I am with my grandmother and other loved ones. I find that I have more appreciation and gratitude when I use this reminder. This is the time to enjoy the small moments together, as well as to ask questions and listen to stories from their younger days.
When our loved ones are gone all of these opportunities will also be gone. Usually, we don’t know how much longer we have together. We can either take advantage of them now or regret the missed chances later on.
At times it is difficult for someone with Alzheimers to know how to express themselves
I had one resident that was normally very sweet, but at times she had nightmares that caused violent outbursts.
Calming her down during one of these episodes was never easy and took a lot of time. Often it took time that others did not want to dedicate to her. There have been numerous times when I spent a good hour or more working to calm her down.
So how do you calm down an Alzheimer’s patient that has a violent outbursts?
Remember that often it is the disease and not the individual
Finding the window to help Alzheimer’s deal with their reality
Understand the history and background of the person. In this case, we knew the traumatic event from her youth that triggered these outbursts.
Redirect the individual as much as possible
Don’t argue with the person
Allow the individual to talk about the incident if possible and necessary. You don’t want to agitate him/her more.
Beware of triggers. Keep a record of events before these outbursts. Is there a certain person, incident, time of day, etc. that triggers these outbursts? By tracking any triggers you can work to eliminate them.
If nothing else works and the person is in a safe place and not a danger to his/her self, sometimes the best thing is to leave him/her alone {even if you watch over him/her from another room} to come down
Pray and quote scripture together or over the person.
I used all of these techniques and in time I was able to calm this sweet lady back and see her return to her normal self. What works with one person may not always work with another, but in my personal experience I found that singing and then praying together were the most calming tools I could use.
Of course, I had to talk with her until she was calm enough to sing and pray with.
How do you calm an individual that has violent outbursts?
often Alzheimer’s patients suffer from hallucinations and paranoia
For a while, GG had hallucinations, until her medicines were changed. We tried to explain to her that although we believed her, we could not see the children she saw. She would look at us like we’d lost our minds. In time, we discovered sometimes the best thing was to go along and talk with the children and tell them to leave. This seemed to suit her much better.
Alzheimer’s is a very difficult disease on everyone involved. Hallucinations, past memory regression, and an alternate reality will often appear to the patient. As caregivers we often want to reason with them, but this often causes our loved one to become more agitated, frustrated and even explosive at times.
One thing I learned in my training as a caregiving is telling “Therapeutic lies.” The term is defined as the practice of deliberately deceiving patients for reasons considered in their best interest.” {from PsychiatricTimes.com]
So how do we reason with Alzheimer’s?
Finding the window to help Alzheimer’s deal with their reality
Pick your battles—is this really worth fighting over?
There is no need upsetting the patient—if they think a parent or sibling is still alive go along with it. Maybe use generic answers such as “we’ll see them later, they are working, etc.”
If telling the truth is going to be more detrimental or traumatic to the individual
Try redirecting the individual and getting their mind on something more positive {or different}
Understanding when the patient may need to talk about an issue and listening, such as when they are grieving.
Try to use methods that will relieve anxiety and stress
Ask questions to gain more information. For example if the individual thinks she is 21 and single, ask questions about her life at that time {what does she enjoy doing, is she dating anyone, what year is it, who does she live with, where does she work/go to school, etc.}. This gives a glimpse into her lives back then and you’ll be amazed at what you may discover.
How can you handle a situation without demeaning, hurting or embarrassing the patient?
We have to find a new normal
Remember, that often it takes trial and error to discover what works. When dealing with this disease you have to think fast on your feet. What works one time may not work the next. I’ve even discovered that what works for one individual may not work for another.
The main thing to remember is that when reasoning with Alzheimer’s strive to calm the patient and help him/her deal with the stress and frustration that is being felt.
Living 100 years is a major accomplishment. The history, heartache and joys that have been experienced during this time are numerous. I love to talk with those that have made reached this milestone {and those nearing it by 10-20 years}. There is so much history and life lessons that can be learned. If you know anyone close to such a monumental celebration, I encourage you to take the time to record a living history {record their memories and history}.
We’ve all seen on the Today Show where those celebrating 100+ years are recognized and honored. But, how do they go about contacting the Today show and other agencies for this honor?
Below are some contacts to help:
The Today Show: Please contact 6-8 weeks in advance
Williard Scott of The Today Show
Send a written request with a photo, birth date, something unique/personal about the person (ie. hobbies, accomplishments) and a contact telephone number to (centenarians are picked randomly to be recognized on the show):
Willard Scott Birthdays TODAY show, NBC News 4001 Nebraska Avenue NW Washington, D.C. 20016 or email the information to: willardscottbirthdays@nbcuni.com.
According to their website: “If your grandmother is chosen, you will receive a phone call before the show airs. Otherwise, she will get a birthday letter from Willard Scott.”
Mailed: White House Greetings Office, Room 39, Eisenhower Executive Office Building, Washington, DC 20502.
Fax: 202.395.1232.
Include the full name(s), address and title (Miss, Mrs., Ms., Mr.) of the recipient, plus the date and event being celebrated. Also, include your full name and phone number in case there are any questions.
Please contact a minimum of 6-8 weeks in advance to receive on time.
Greetings From Past Presidents
Bill Clinton, Correspondence Director, Office of William Jefferson Clinton, 55 West 125th Street, New York, New York 10027, (f)212-348-9245
Office of George Bush, P.O. Box 79798, Houston TX 77279-9798
Jimmy Carter, Carter Center, 1 Copenhill, 453 Freedom Pkwy., Atlanta, GA 30307.
George W Bush, Office of George W Bush, PO Box 259000, Dallas, TX 75225
For residents of UK/Canada the Queen of England will send an acknowledgement
Send copy of birth certificate/proof of age to:
Assistant Private Secretary
Buckingham Palace, London
SWIA IAA
Write “Anniversary” in top left hand corner of envelope
Don’t forget to check with your state. This information varies by state, but check the Governor’s office, Lt. Governor’s office or if there is an Office of Aging for the State.
Other sources to consider or check with: {this can also be used for 50+ Anniversaries}
Local newspaper
State newspaper
Society/organization individual was involved with
Church {they may want to honor the individual or write up an article for their newsletter}
Nursing facility {if they are in a nursing facility–they may throw a party or allow you to throw one. Also, if they have a newsletter or announcement screen they may be willing to post the information.}
Please remember to give plenty of notice to any sources. Also, the more accommodating and willing you are to provide requested items {information, memories, pictures, etc.} will be greatly appreciated.
Alzheimer’s is a terrible disease and there are times when traumatic moments and horrific memories return to traumatize the patient.
So what are some ways to calm the patient?
Music has a healing power
Redirect the patient and see if you can get their mind on something else
Allow the patient to speak about the incident—some need to express their feelings and what was experienced in a safe and loving environment. Never judge or push for information, but allow the patient to share what s/he is comfortable with.
Music—sing a song or hymn that is comforting to the patient. If you can’t sing, put on some soothing music, whether it is a collection of hymns or instrumental {especially piano} music.
Pray—if the patient is a praying person, ask them to pray or if you can pray with them. I have seen amazing changes happen with prayer in a person with Alzheimer’s.
Prayer changes things
Love—sometimes the patient just needs to feel loved and safe
Touch—the power of touch is powerful. Often a hand on the shoulder or a pat of the hand does amazing wonders in soothing a patient that is troubled. This is a comforting act to him/her.
Family—sometimes seeing a familiar face is all that is needed. I have seen Alzheimer’s patient’s entire demeanor change when they are able to see a spouse, child or grandchild. This brings comfort and assures the patient that s/he is not alone and not forgotten.
What has worked for you in dealing with traumatic situations in an Alzheimer’s patient?
When dealing with Dementia/Alzheimer’s patients we get a variety of responses.
One moment the resident may be the sweetest and calmest person, and a moment later s/he may be cussing you out.
This is not personal. This is not a personal attack on the second party in any way.
The important thing to remember is this is the disease.
So how do you respond?
First and foremost, with love—stay calm and answer in a calm, loving manner
Step away if the stress of the moment becomes too much
Do not take it personally
Observe the environment—is there something that may be setting the individual off? Knowing the person really helps to understand the triggers. Does noise irritate the person, was there a bad night, is there a person that sets the person off, etc.
Soothe the individual. I have found that music is always a wonderful healer, but sometimes you have to try different techniques to find the right one for that individual
Check with your physician to discuss medications and the effects on the resident
Take away any triggers—if possible
Above all, remember this is the frustration and disease speaking and not your loved one.
Seeing a loved one decline is always difficult, but especially when there is a significant decline in a short time.
This realization is often difficult for family members to accept.
Questions begin to be asked such as:
Why did we not realize?
How did this happen?
What do we do now?
What could we have done differently?
So how do we deal with a dramatic decline in a loved one?
Accept that this is the new reality—that is much easier said than done, but things are not going back to where they used to be.
Ask for prayer from family and friends. Asking for prayer never hurts, but also think carefully before placing information on social media sites.
Understand that only God knows the day, time and hour a loved one is called home. That could be on that day, a month later, a year later or twenty years later. God will provide the comfort and strength necessary to walk the journey He’s taken you on.
Take the necessary steps to make the loved one as comfortable and well cared for as possible.
Bathe the situation in prayer. Every situation is different and sometimes the situation is drawn out, while at other times decisions have to be made quickly. God can provide the guidance, wisdom and comfort that is needed during this time.
Contact the necessary friends and family members that need to be notified. Even if death is not imminent, they may want to visit and enjoy the time they have together.
Discuss the possibilities for the worst case now, instead of having to make split second decisions later on. Determine what the person being cared for wants and his/her wishes for the last stages of life, as well as funeral plans.
With the summer quickly approaching, vacation time is also on the way.
As a caregiver, extra plans have to be made.
One thing the caregiver has to decide is what will happen with the person they are caring for.
So what are some options?
Take your loved one with you—this is always an option, but is this really what you want? Do you need a break from caregiving? Is your loved one up to the travel and changes that are involved with vacation time?
Call in reinforcements—are there others that are involved with the caregiving of this individual? Are there other siblings that can step up and help out while you are away? Call on them and ask if they are able and willing to help. One thing to decide is how you are going to react in advance if they are not willing to be of assistance.
Sitters—check with a local agency or freelance sitters to inquire about their rates and availability. Be specific about how often you need assistance, for how long and what you would like to see accomplished during this time. Is help needed with bathing or cooking or cleaning or transportation or all of it? Be sure to let the sitter know up front.
Respite Care—many nursing facilities have openings for a week or two, to provide respite care {or a rest} for the caregiver.
Neighbors and friends—if none of the other options are available, try asking friends and neighbors if they would be willing to help out while you are gone. Many will be happy to help if asked.
When I began performing years ago, I made the decision to end every performance or musical session with Jesus Loves Me.
I have discovered this is a song everyone knows. I have even had Alzheimer patients that did not claim to be a Christian, but was still able to sing every word to Jesus Loves Me.
Everyone knows the words to Jesus Loves Me. This is one of the first songs children learn. Even in their twilight years, they still remember this song.
I have seen patients whom were bed bound and unable to speak, but as I began to sing Jesus Loves Me, the patient began to sing along.
This often surprises family, but I’ve seen this transformation on numerous occasions, and recognize not only the power of music but the power of God and His love.
If anyone needs to be reminded of this simple promise, it is these patients that are lost behind the prison of Alzheimer’s, and their families.
In what ways have you seen Jesus Love Me break through the barriers of Alzheimer’s?
