Tag: tips

Relying on God’s Strength

We often hear people talk about relying on God’s strength through the difficult times.  But what does that look like?  How do we find strength for the long haul, especially when we are so tired?

We can learn from the ways Jesus handled His own caregiving responsibilities while on Earth.

  • He frequently spent time alone in prayer
  • He often prayed with His closest friends
  • He publicly thanked God the Father for what God had provided.
  • He faced each crisis with calm assurance because He had placed His confidence in God
  • He delegated work to other people
  • He grieved the losses of those He loved with a sense of hope, because He had an eternal perspective

I am sure if you think and pray upon it, you will find many examples from Jesus’ life that model for us the attributes that can make our caregiving more rewarding and fulfilling. But even if we just focus on the above points, we can grow closer to our Lord as we do the work of being His hands and feet for our loved ones.

Look to Jesus as your ultimate model of a Giver of Care (emotionally and spiritually), and follow His example in your own caregiving work.  Obviously prayer is an important part of this, as ½ of his techniques involved prayer.  If you are at a loss for prayer, don’t worry.  God already gave us one;  The Lord’s Prayer.  Don’t forget to ask others to pray for you and your family as you navigate this difficult time of life.  I know when I have had my greatest pain and hardships, I could actually feel the prayers of others when I felt too lost to pray myself.

Jesus faced each crisis with calm assurance because He had placed His confidence in God.  We need to ask ourselves if we are keeping God’s promises forefront in our mind; which can be difficult to do when overwhelmed with your own life, plus taking care of someone.  How can I switch over to this calm assurance?  For myself, I leave post it notes on the mirro in my bathroom.  Little inspirational sayings or bible verses.  Goodness knows that my mind is so busy thinking of what I have to do next, that these positive thoughts might never enter my brain if I don’t have some sort of reminder.  The same goes for the eternal perspective.  Reminders and prayers work.

Yes, Jesus delegated.  You can too!  Using the Genus™ app, you can create a care circle of friends and family to provide respite care or perhaps a meal.  If your church is involved with using Genus™, then maybe you can enlist help there as well.  Don’t feel you shouldn’t ask for help.  Jesus asked for help.   Remember that you are providing an opportunity for others to be blessed by being His hands and feet for your loved one.  Being a martyr and trying to do it all yourself doesn’t honor God or your loved one.

Jesus did all these things and more.  We can use him as our Givers of Care Role Model.  He wants to help.  All we have to do is ask!

 

 

 

Understanding Dementia, the Ultimate Thief

Understanding dementia and all its complexities cannot be done in one article, or neither by reading an entire book.  Hence is why there are countless people who have dedicated their careers to helping us better understand this debilitating condition.  There are many books out there, and one of the best, and most easy to read books I have found is called “Experiencing Dementia”  by H. Norman Wright.  It is a short, easy to read book and very reasonably priced on Amazon (less than $5.00)

The author has been diagnosed with early stages of dementia after years of being a caregiver for a handicapped son and eventually, his own wife.  After doing his own research, both academically and experientially, he skillfully describes the condition in an easy to understand manner.

Dementia is not a disease in itself; but rather a group of symptoms that result from other sources, or diseases.  It is basically an ‘umbrella term’ used to describe the many symptoms that interfere with normal life functioning.  There are several types of dementia, with Alzheimer’s accounting for somewhere between 60-80% of all cases (over 5 million cases).  The other most common types of dementia are:

  • Vascular Dementia
    • small silent strokes
  • Dementia with Lewy Bodies
    • Abnormal clumps of protein form in the brain causing never cells to degenerate
  • Frontotemporal Dementia
    • The area of the brain responsible for behavior is gradually eroded
  • Normal Pressure Hydrocephalus
    • Used to be called ‘Water on the Brain’ because of buildup of fluid on the brain
  • Mild Cognitive Impairment (MCI)
    • Change of IQ functioning

What our loved ones with dementia are facing:

  • Memories and abilities that they have worked their entire life to obtain, are being slowly stolen from them
  • Great emotional pain: for both Receivers of Care and Givers of Care
  • Loss of self: one of the greatest losses a person can face
  • Emotional issues and personality changes as a result of the part of the brain responsible for emotions and memory is affected (the amygdala)
  • Sleeplessness due to the brain stem being affected
  • Loss of memory is extremely frightening; our memories give us life!

Dementia is a terrible thief.  It robs people of their memories, abilities, personalities, coping abilities, sleep, and eventually physical functions.  How couldn’t this change a person?  It is so out of their control, we must remember that.  It helps me to put myself in the place of a dementia patient, and try to imagine how I would feel.  Yes, this is a scary exercise.  But if it’s scary just thinking about it, imagine how it is to live with it!  Bone chilling to consider.

One fact is certain.  Regular, consistent, positive visits from family and friends is the biggest source of relief for our loved ones, even if they don’t remember it later.  Imagine how frightened they must feel.  Spreading out visits will help with that.   Using the Community module in the Genus™ app, you can look back over past data and see how you and your care circle are doing with providing consistent contact with your loved one.  You can correlate that to other date  you might be tracking, such as physical mobility and/or mood.  Then using the calendar function, you can easily plan visits so that they don’t overlap too much and are spread out to best benefit the patient.

Using the Moments module, you can take pictures of special people, places and events that will help stimulate positive conversation during your visits.  Using your smart phone during a visit, you can share the photos with your loved one, or just listen to some music.  We have also taken pictures of bible verses images and other inspirational sayings that we use when visiting my mom.  She is always grateful for the wisdom shared and seeing it in writing is different than hearing it from a family member.  More authoritative and less “bossy”.

Yes, dementia is a thief.  But armed with information and tools, we can minimize the damage and provide the best love and support we can for our loved ones.

I Want To Go Home!

If you are caring for emotionally distraught loved one who uses the “I want to go home!”  phrase over and over; then you have probably felt some frustration with how to respond to that.   If your Receiver of Care is in a facility, or another person’s home; then it is understandable why they are saying that phrase repeatedly.  However, what if your Receiver of Care is already home?  How should you respond?  What will calm your loved one down?  What are they really saying?

Maybe the following story, about a young Giver of Care, Anna, will provide some light on the subject:

Anna was a sweet 13 year old girl, who was emotionally distraught over some sad family situations.   Her grandfather was suffering from Alzheimer’s and her parents were in the middle of a very sad divorce.  It was a very lonely and troubling time for Anna.   One night, things seemed more than she could bear.  ‘”Dad…I want to go home… I want to go home.. I want to go home”, she kept repeating, through her broken sobs.

Her Dad, trying to comfort his daughter, asked Anna to explain what she meant.  His heart broke for his daughter, as she answered through her tears, “Back to when everything was okay, when we were traveling, singing, camping, and everything was okay!”

What a profound moment for Anna’s dad.  As he was sitting in his home with his upset daughter, he realized HOME is not necessarily a physical place.  HOME is a safe place.  A time when things were good.  Bingo!

The following morning, Anna’s dad was visiting his father, a patient at an Alzheimer’s memory unit .   The elderly man began his visit as he often did, repetitively saying,  “I want to go home”.  Ordinarily that would lead to a ‘logical, and unproductive attempt’ to reason that this is his new home.  That morning however, armed with a deeper understanding of home, a heartfelt reply came forward.  “Yes, let’s go home Dad.”

They held hands as they walked and talked  about fond memories: when his father taught him fishing, when they built a tree house together and even how his father decided to ask his mom for her hand in marriage.  It wasn’t long before the elderly gentleman felt peace and he stopped asking to go home.  When they returned to his apartment within the memory unit he asked, “Is this where I live?  It sure seems nice!”

 Other siblings began using this same approach and over time, this helped him transition to his new and final place of residence at the memory care unit.  Equally valuable, this approach of ‘changing the subject’ led to more meaningful and healing visits for all involved!

 Research confirms, when we are upset, talking about a time when life was more pleasant is therapeutic and triggers a chemical reaction that helps brings a sense of clam.

The take away?  As a caregiver sometimes it’s simply best to accept that “being right” isn’t the answer, i.e. it’s not the time to say, “Dad, enough already .. you are home”.  It may be best to take our loved ones for a walk down memory lane!

The wonderful young woman who inspired this story is the daughter of the developer of Genus.  Anna couldn’t have been kinder to her grandfather when he was suffering with Alzheimer’s and shared many wonderful, and yes, repetitive conversations about his past.

When Your Loved One Can’t Communicate Clearly

Givers-of-careOne of the most difficult situations to deal with when caring for a loved one with a brain disease such as dementia, is when the patient cannot clearly communicate his/her wants and needs.  Even when we have provided the necessary home-care or nursing care for their safety, we worry how their emotional safety and if their needs are being met.   How can our loved ones communicate needs, interests and desires when they can’t clearly communicate?

The Alzheimer’s Association has some good resources for communicating with Alzheimer’s patients as they progress.  You will want to spend a great deal of time reading from the resources here.

This is Me!

One idea is to create a “This is Me” document for caregivers to have access to when they care for your loved one; either at home or in a facility.  Ideas to include in the document (worded as you speaking for the patient).

  • Name I like to be called.
  • Where I live: The area (not the address) where you live and how long you have lived there.
  • The person(s) who knows me best: This may be a spouse, relative, friend or care-worker.
  • I would like you to know: Include anything you feel is important and will help staff to get to know and care for you, eg I have dementia, I have never been in hospital before, I prefer female caregivers, I am left-handed, I am allergic to…, other languages I can speak.
  • My background, family and friends (home, pets and any treasured possessions): Include place of birth, education, marital status, children, grandchildren, friends and pets. Add religious or cultural considerations.
  • Current and past interests, jobs and places I have lived and visited: Include career history, voluntary experience, clubs and memberships, hobbies, sports or cultural interests, favorite or significant places.
  • The following routines are important to me: What time do you usually get up/go to bed? Do you have a regular nap or enjoy a snack or walk at a particular time in the day? Do you have a hot drink before bed, carry out personal care activities in a particular order or like to watch the evening news?
  • What time do you prefer to have breakfast, lunch, evening meal?
  • Things that may worry or upset me: Include anything you may find troubling, eg family concerns, being apart from a loved one, or physical needs such as being in pain, constipated, thirsty or hungry. List environmental factors that may also make you feel anxious, eg open doors, loud voices or the dark.
  • What makes me feel better if I am anxious or upset: Include things that may help if you become unhappy or distressed, eg comforting words, music or TV. Do you like company and someone sitting and talking with you or do you prefer quiet time alone?
  • My hearing and eyesight: Can you hear well or do you need a hearing aid?
  • How is it best to approach you? Is the use of touch appropriate?
  • Do you wear glasses or need any other vision aids?
  • How we can communicate: How do you usually communicate, eg verbally, using gestures, pointing or a mixture of both? Is the use of touch appropriate?
  • Can you read and write and does writing things down help?
  • How do you indicate pain, discomfort, thirst or hunger? Include anything that may help staff identify your needs.
  • Are you fully mobile or do you need help? Do you need a walking aid? Is your mobility affected by surfaces? Can you use stairs? Can you stand unaided from a sitting position? Do you need handrails? Do you need a special chair or cushion, or do your feet need raising to make you comfortable?
  • What physical activity do you prefer?
  • My sleep: Include usual sleep patterns and bedtime routine. Do you like a light left on or do you find it difficult to find the toilet at night? Do you have a favored position in bed, special mattress or pillow?
  • My personal care: List your usual practices, preferences and level of assistance required in the bath, shower or other. Do you prefer a male or female caregiver? Do you have preferences for brands of soaps, cosmetics, toiletries, continence aids, shaving or teeth cleaning products and dentures? Do you have particular care or styling requirements for your hair?
  • How I take my medication: Do you need help to take medication? Do you prefer to take liquid medication?
  • My eating and drinking: Do you prefer tea or coffee? Do you need help to eat or drink? Can you use cutlery or do you prefer finger foods? Do you need adapted aids such as cutlery or crockery to eat and drink? Does food need to be cut into pieces? Do you wear dentures to eat or do you have swallowing difficulties? What texture of food is required to help – soft or liquid? Do you require thickened fluids? List any special dietary requirements or preferences including being vegetarian, and religious or cultural needs. Include information about your appetite and whether you need help to choose food from a menu.
  • Other notes about me: Include additional details about you that are not listed above and help to show who you are, eg favorite TV programs or places, favorite meals or food you dislike, significant events in your past, expectations and aspirations you have.

 

You May Not Remember, But I Will Never Forget

Givers-of-careSay the title of this article out loud to yourself.   Let that sink in for a moment.  Can you picture yourself silently saying this to your aging parent who struggles to remember the past?  Now picture yourself saying it with a smile in your heart.  You are building new memories that you will have for a lifetime.  Make them count using the power of photos.

This is something I tried to remind myself of often when spending time with my dad during the final stages of his Alzheimer’s and I find myself doing the same as I enjoy time today with my mom.   That cruel disease of Dementia, stealing the memories of our loved ones, can be discouraging.  But if you try to remember that you are building new memories, while leaning on the old memories, you will one day look back and be glad you thought of it this way.  I know I am.

Using the Power of Photos to Build New Memories

One possible way to create new fun memories with your loved one who suffers from memory loss is to use photos to stimulate conversations about the past.   Photographs from the past allow patients to reminisce about pleasant times in their lives. Photographs from the present help patients relate to their current situation. The patient experiencing memory loss is able to “remember or recognize someone they love and know in a world where so many things are now unfamiliar to them.”2 A study by Ellen Mahoney of Boston College found that, in one instance, photos distracted the Alzheimer’s patient from the effects of Alzheimer’s disease.

 

Using the “Moments” platform of the Genus™ App, you and all the other members of your caring community can use a consistent set of photos to work with your aging loved one.  From the app, you can upload the photos you take to a digital photo frame for your loved one to enjoy.  My mother comments almost daily on how much she loves the photos we send to her via our phones to her photo frame.  It makes her feel part of her children’s and grandchildren’s lives to see the photos they send from their various adventures.   Of course she adores the photos we take when we’re with her as well, but she really benefits from seeing “surprise” photos pop up on her frame from her loved ones’ comings and goings.

 

10 Photo Tips for Families Facing Alzheimer’s

Compiled by the Alzheimer’s Association® in partnership with Shutterfly, here are 10 ways you can help lift a person with dementia to reminisce:

  1. Place photos in chronological order.Photo books can be great tools for showing someone’s life history or story. Start your photo book at the beginning of the person’s life and lead up to the present day. Organize the book around key moments and concentrate on happy occasions to assist with engagement. Also, keep the design simple, with one or two pictures per page, so the photos are easy to focus on.
  2. Show relationships. To help spark recognition of family members, dedicate a section to each person. Choose photos that include the person with the family member from different life stages and place them in chronological order.
  3. Select meaningful moments. Be sure to include photos that reflect the person’s meaningful life moments and depict his/her favorite hobbies or activities, such as weddings, graduations and vacations.
  4. Make it an activity.Work with the individual as appropriate to create the book, and share memories and conversation as you put it together.
  5. Engage in conversation.Ask open-ended questions about the people or events in the photo. How were you feeling in that picture? Tell me about your brother. What are some of your favorite childhood stories? Tell me more about this picture. The answers are less important than the conversation and engagement.
  6. Share your own memories.As part of the conversation, share your memories and feelings when looking at the pictures. Answer some of the same questions you’re asking the person with Alzheimer’s.
  7. Connect, don’t correct.This is more about making a connection and sharing memories. Focus on connecting with the person, not correcting them.
  8. Revisit frequently. Take the time to frequently revisit memories using the photos. Do what works best for the individual. It may be daily or weekly, depending on the person.
  9. Mix it up.Don’t discuss the same set of photos week after week. To help keep it fresh and interesting, discuss various parts of the book with different people and events on a regular basis.
  10. Move at a comfortable pace.Follow cues from the individual to gage their interest level and determine how they are reacting to the photos.

 

 

It’s important to monitor your loved one’s reactions to the activity.   If the reaction is joyful or reminiscent, you are on the right track.  There may be times that the photos may somehow agitate him/her, then obviously you will want to redirect.  Like anything we do when dealing with dementia, what works one day, may not necessarily work the next.  One of our many challenges that keeps us on our toes!