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.
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.
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?
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!
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!
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.
When taking care of an aging or chronically ill loved one, we need to be concerned with several types of safety: physical, emotional, financial, and spiritual. We often do a stellar job of taking care of their physical needs, but what about their emotional needs?
An elderly person needs to feel safe, remain close to other people and believe that his life continues to be meaningful. Meeting his/her emotional needs can help avoid depression. Signs that your aging loved one needs more support may include difficulty in sleeping, a poor appetite or an inability to concentrate. Emotional care for a senior should include steps designed to deal with vulnerability, loneliness, boredom and isolation.
Using Technology to Help
Here is where the genus™ App can help design these next steps. When the community of care folks (the people you have in your care community on the App) can easily access visitor information and a common schedule; then all can work together seamlessly to provide visits and activities that allow for regular contact with loved ones. Here you can easily log visits and phone calls. It is important for all involved to realize that this is not about who visited Mom the most, but rather how we can all work together, making the most of our busy schedules, to provide Mom with the best emotional support there is: time with loved ones. Think about how important Mom will feel when she sees her community of loved ones working to give her the best, together. I know that my mom has frequently commented to her friends how her children are using “the internet” to schedule visits and activities. She feels honored that such efforts are being made to provide her with best care possible.
Along with making sure our loved ones get regular social contacts, it’s important to note how they are doing physically as well. In the Health platform of the Genus App, you can track how the patient feels physically each day as well as tracking their mood and mobility factor. You can then run medical reports periodically to show the doctor. It could help the doc adjust medications, change medications, or even remove unnecessary meds. With various folks inputting the data, the App allows for tracking of data in a meaningful way to share with family members and medical professionals as necessary. You then can have a complete picture of your loved ones’ physical and emotional health, as they are both tied so closely together.
Some tips to remember:
- Talk with the older person in your family to identify needs. Listen to individual concerns. Don’t assume all elderly are lonely. Encourage the person to express their feelings and be a good listener–ask questions and don’t be judgmental.
- Be aware of fears. Due to medical conditions, some people lose independence as they grow older. Some elderly people may fear not being able to take care of themselves.
- Many older people develop depression. Factors such as illness, death of family members and medications all contribute to depression. Don’t be afraid to ask family member if he or she is feeling depressed. Also look for signs, such as withdrawing from family and friends, mood changes, fatigue and weight loss.
- Understand the need for purpose in an elderly person’s life. With their children grown and retired from their job, an elderly person may feel they are not needed. Many volunteer agencies are geared especially for senior citizens. For example, Senior Corps utilizes senior volunteers in a variety of jobs. In our community, we have an agency called SOC (Society for Older Citizens) that provides all kinds of services for the elderly.
- Recognize the need for professional help. Some emotional problems will need to be evaluated by a doctor or a qualified mental health professional. For example, if signs of depression persist for more than two weeks and interfere will daily activities, professional help may be needed.
- Be aware some emotional problems in the elderly may be caused by side effects from medication and certain medical conditions. A physical may help determine if medical problems are contributing to emotional issues.
Say 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:
- 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.
- 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.
- 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.
- Make it an activity.Work with the individual as appropriate to create the book, and share memories and conversation as you put it together.
- 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.
- 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.
- Connect, don’t correct.This is more about making a connection and sharing memories. Focus on connecting with the person, not correcting them.
- 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.
- 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.
- 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!
One of the most frustrating things to deal with when caring for an aging parent is the many health complications that arise as one ages. Medical safety is of key concern. Many family member also acting as caregivers have not had a great deal of experience dealing with doctors and various medical safety issues. There are many questions that arise, making the whole caring experience a bit overwhelming without the proper information.
Using the Genus™ App
You can document your loved one’s medical conditions in the medical section of the app, list the doctor contact info for that condition along with pertinent medications. To have all this information literally at your fingertips on your phone is invaluable. All it takes is one person dedicated to entering the information, and once it is there, any approved member of your care community can easily access this important info as needed. The end result is caring better, together.
Most important to medical safety is the value of tracking specific medical information inside the app. Maybe you want to track the patient’s blood pressure and heart rate each day, along with their mood and mobility factor. All of this is easy to do with the touch of a few keys using the Genus App.
Help in an Emergency
I can honestly say that if I had this app available to me when my dad was alive as we were caring for him with his Alzheimer’s condition, it would have been very helpful. More than once I was called by the nursing home to say that my dad was being sent to the ER due to a fall or something similar. Always in the middle of the night. Then I would go to the ER, sleepy and bleary-eyed, being asked all kinds of questions by the doctors of which I had no answers for. You see, I wasn’t the family member in charge of the medical information. That was my sister Jane. She was the medical guru of the family and did a wonderful job keeping track of our parents’ medical conditions and appointments. But that one person can’t always be available during an emergency. Had I had the medical information on my phone, as we can do with the Genus App, it would have provided better emergency care for my dad and much less frustration for us both. I am grateful to have this App to use with my mom, especially the emergency feature: the little red cross. I have all the pertinent information at my fingertips! What a relief!!
Another helpful website
For dealing with medical safety, go to https://healthfinder.gov/ Here you can type in the age of your patient and see what recommended health screenings are suggested as well as find out information on a variety of health issues that may be affecting our loved ones. There is plethora of information here to help you navigate through these complex health issues.
In this article, Carol Bradley Bursack gets a licensed social worker’s take on how to halt and prevent family feuds that arise during the process of caring for a loved one.