Martha Jocis, Author at Resources for caregivers

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.

Communicating With Our Receivers of Care

If you are involved in caring for an older adult, maybe suffering from Dementia or Alzheimer’s, or possibly suffering from a physical disability; you already know how difficult communicating with them can sometimes be. It is understandable that our Receivers of Care can perceive us as ‘bossy’. It is also understandable that we won’t like that perception one bit!

We didn’t choose to have to tell our loved ones what to do and how to do it. They certainly did not choose to need care. It is easy to get frustrated in the whole communication process, ending up in an unnecessary argument. At the very best, we may meet with passive resistance from our loved ones and that doesn’t help anyone. At the very worst, an all out war!

This article from Psychology Today provides some excellent tips for communicating with the loved ones we care for. If you or your loved one are particularly struggling with communication, there is also a book that goes in to greater detail offered in the article.

Finding and Paying For Long Term Care

You have found the home-care provider or facility you want to help with the care of your aging loved one, but how does one pay for this? If your loved one doesn’t have long-term health insurance, things can get expensive very quickly. This government website answers the many confusing questions involved with the financial end of providing care.

Included in this link is a search engine for finding facility care, home care, and just about anything else you can think of provided in this resource. The fact that it is not a private industry that receives pay for recommendations is a good way to double check on what’s available to your family to care for your loved one.

Am I At Risk for This Disease?

If your life is wrapped up in the challenges of caring for a loved one with Alzheimer’s, you can’t help but think, “Is this going to be me one day? Am I at risk for this disease?” It can be pretty darn scary.

Diet

What we eat is critical to maintain healthy brains, and of course to keep us feeling strong enough to accomplish all that we need to do. Amy Paturel, of AARP discusses the importance of the diet we follow for our brain health. You can find her article on the AARP website. She lists simple foods that need to be part of our daily diet to optimize the science of nutrition in combating Alzheimer’s. Basically, she is encouraging the Mediterranean Diet, known for brain enriching foods.

Regular Exercise

Of course, diet is just part of what we need to do to keep our brains healthy. Regular exercise is equally important, which can be difficult when you are busy living your demanding life while caring for an aging loved one. Remember to allow time for yourself to get the exercise you need no matter how impossible that seems to be. Is there a way you can kill two birds with one stone and exercise while spending time with your loved one? My dad loved his daily walks and to make it more physically challenging for myself, I sometimes would jog in place as we walked through the park. He got his much needed family time and I was able to get some cardio as we spent time together as well! I have a friend who gently jogged as she wheeled her mom through the neighborhood in her wheelchair. Heck, I’ve even been known to sit and do my stretches as we chatted in the den. We do what we gotta do, right?

Additional Information

For more tips on Alzheimer’s prevention, see Alzheimer’s website with all kinds of up to date research: alz.org

Remember, taking care of the You the Caregiver is just as important as taking care of your loved ones!

The Magic of Involving Our Children in Eldercare

This video, created by Sunny Rae Keller, a young child with a grandmother suffering from Alzheimer’s, says what I could never attempt to write here. The innocent love of children can do wonders to show us what is really important in this battle we fight. Once you have finished drying your eyes, read on to find out ways to involve your children in eldercare. Great blessings await you all if you embrace this powerful relationship.

Are They Being Ripped Off?

It’s easy to get caught up in the mindset that our children are really the ones who got “ripped off” when our parents are suffering from dementia or another aging ailment. I know I have heard these exact words from friends who are in this situation, and I could understand that feeling completely.

They don’t have a grandparent that is “all there”.
They never got to meet the “real grandma or grandpa”.
Their free time is tied up with taking care of someone rather than just having fun …

But most kids don’t feel that way. We are robbing our children of a life-changing and character forming opportunity with this understandable, but misleading attitude. The song above is evidence of how our children still love fiercely in the face of the ugly beast of aging illnesses.

I love watching how my siblings involve their children in caring for our parents. My son was grown up and out of state by the time my dad’s Alzheier’s had reached the intervention point. But my siblings with younger children were torn daily between daily homework and soccer games and attending to my parents’ needs. Their stress was definitely greater than mine in this arena and it was such a blessing to watch the many creative ways they involved their kids.

How Can the Kids Help?

Shopping, cooking and general chores can be more fun when little kids are empowered to help and really feel as if they are contributing to grandma/grandpa’s lives
Involving the kids in creating photo montages, either on a poster board or via technology is real fun for the kids and the grandparents
Taking the parents to your daily sporting, dance and scouting events is good for everyone and maximizes the use of everyone’s time
Thinking of field trips to go to that all may enjoy: the zoo, museums, parks…. Something for everyone. Check with your local library for discounts to area attractions. There are loads!
Be sure to include music in your kids’ interactions with their grandparents. They can share with each other their favorite songs and you can throw in your classic rock n roll favorites too!
Lots and lots of storytelling. Asking the grandparents to tell about when they were growing up. Kids LOVE to hear these stories

For 101 activities for kids to do with an Alzheimer’s patient from the Alzheimer’s Association, click here. This list will spark other ideas that may be more specifically suited to you and your family. Remember, these are precious moments between your children and their grandparents that you are creating. Enjoy them!

What Are Young Givers of Care

Our team at genusConnect™ recognizes the value of involving our children in the care of our parents. It is why we have a special section dedicated to Young Givers of Care. It is our unique belief that much is to be gained by everyone with actively involving our kids in the care of the aging members of their families.

In my family, the teenage members who have grown up with grandparents suffering from dementia and Alzheimer’s, are now part of the care community using the Genus App. Those that can drive are involved by doing some of the shopping and easier errands. They can log their visits into the App, providing important feedback for everyone. They really enjoy taking pictures and adding them to the “Moments” platform. Some even use the App to call their grandmother. Get them involved and watch them go!

Who Benefits When the Children Are Involved Caring for Aging Loved Ones?

The Children: building of self-esteem, developing empathy, empowerment
Our Aging Loved Ones: love, joy, attention, and feeling of usefulness, brain engagement, physical exercise,
Us, the Givers of Care: a little break for us to do other tasks while our parents are happily busy with our kids, satisfaction of knowing we are doing what’s right for all involved; building positive character traits in our children that will last a lifetime

What do we really have to lose by making this challenge in our life a Family Affair? What is there to be gained? I think you can see the answers.

When Your Loved One Can’t Communicate Clearly

Givers-of-care One 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.

Stress Management for Givers of Care

Being a caregiver for chronically ill patient can take its toll on Givers of Care. In fact, we often just avoid thinking about it because even that adds to the stress. Doing your homework on combating stress will benefit you and your loved one. If we don’t take care of ourselves, who will? And if we don’t take care of ourselves, then our loved ones suffer as well.

This article from the Mayo Clinic addresses this issue and provides some helpful tips for combating stress. In a very clear, organized fashion, the Mayo Clinic staff has gathered information on signs of stress, risk factors, and strategies for dealing with caregiver stress

Common Medication Errors

Safety One of the most important aspects of physical safety for chronic patients is dealing with the myriad of medications involved in their care. In fact, medication errors may be one of the first warning signs you saw that led you to realizing your loved one needed additional help.

A great resource for reducing medication errors is this article provided by the Mayo Clinic. You will find many medical safety ideas that you may not have already considered.

Another article that is helpful in avoiding medication errors is from Centers for Disease Control and Prevention. Here you will find some specific warnings about certain medications that need close monitoring as well as excellent tips for managing medications.

Your aging loved one may not be ready to give up control of medication management. This may take some time to convince him/her. For us, it took quite a bit of conversation and an unfortunate hospital visit for our mother to give up that control and allow us to fill her pill box weekly. She had become quite ill and had to spend weeks recovering from the effects of medication errors she had unwittingly committed. We were lucky that the effects of medication misuse hadn’t become permanent, yet.

Remember to use the genus™ App to keep your loved ones’ medications list up to date. It truly is worth the time and effort to input the medication data into the app. This part of the app in the Medical platform will provide you with medical safety information when you visit the doctor’s office, consult with a pharmacist, or make a plan for safe medication dispersal. All this at the tip of your fingertips, wherever you are! Together, we can care better.