Caring for the Elderly: 92 Pieces of Wisdom was created in honor of what would have been my mom, Hannelore Sylvia’s, 92nd birthday. It is in her memory that LA Elderly was created many years ago. It is the guidebook I wish I had or had even known about during our journey through eldercare and dementia.
It’s a collection of my thoughts, tips, and ruminations, along with wisdom from some of the best and most knowledgeable members of the LAElderly community.
It is divided into six sections:
- What I wish I knew sooner: Caregiving for an elderly loved one
- Finding and engaging with caregivers and facilities
- Tools and strategies for caregiving
- Self-care tips for the caregiver
- Navigating through community resources
- Advice for living in the sandwich generation world
It is my hope that this guidebook provides you with food for thought, a roadmap, and even a glimmer of support during difficult moments.
– Michelle
What I wish I knew sooner: Caregiving for an elderly loved one
Financial health is as important as physical and mental health. We have all heard too many horror stories about financial abuse of the elderly. If you don’t have the time to take care of your elderly loved one’s financial matters, retain a trusted professional to do so. Be very careful of friends and caregivers.
Jonny J
https://www.linkedin.com/in/jonnyjoseph
Encourage independence consistently and as long as possible, especially in the area of daily activities.
The key to meeting the needs of the elderly and maintaining a sense of calmness is to accept early on the need to be flexible and acknowledge that needs will change over time.
It’s important to know our loved ones’ desires for themselves and their families. Don’t assume. Listen to their stories, reflect on their words, ask questions.
How important it is to be effective with time management. Prioritizing duties throughout the day is key.
Dafna T
It is really helpful to have important paperwork, such as power of attorney documents, a will, and advanced directives.
You are never as prepared as you think when dealing with your loved one.
Susan F
www.trainwithsusan.com
No one is really prepared to be a member of the sandwich generation. When it hits you like a ton of bricks you will know you have arrived.
No matter what Medicare health plan you have, you should find a trustworthy insurance agent to take a look at it every few years.
We constantly find people not signed up on the right plan for their needs and budget. And, people end up spending $1000 a year more than they should have.
Paul D
http://pdinsure.com/
The loss of cognitive and physical health may not be linear. There may be moments of clarity, stamina, and joy. Just embrace these moments. They can leave as quickly as they appear..
Make sure there is a space and time for your elderly’s passion. Dementia is a funny thing. There are times of clarity, so make sure a clear spot and materials for self-directed activities are available for your elderly loved one.
My mother has taken over the dining room table permanently, and that’s ok. On it are notepads (for writing in longhand), dictionaries, and books of poetry. My mother is a poet with a deep connection to the Yiddish language and had translated some Yiddish documents from the Holocaust. (See https://poetryinhell.org/) There is still much poetry from that time that has never been translated, and working on that, however intermittently, gives Mom’s life purpose and meaning.
My father was a prolific hobby photographer and still has an oversized printer that takes up half the study! On a good day, he will find a beloved scenic shot or portrait to print, and he likes to print onto artist canvas. Years ago he used to stretch canvas onto frames for me for my oil paintings, and now he stretches his own photo prints onto supports he buys. Even though he spends a lot of time in bed, we all cheer when he gets up to “make a picture.” His pictures bring the whole family a lot of joy.
Ruth A
Save their art pieces if they make them. Much like the art of children, it becomes invaluable over time.
The unpredictability of it all–work on being mentally ready for the twist and turns.
Karin F.
Ensure safety and comfort: Create a safe and comfortable living environment for the elderly, taking into account their mobility and accessibility requirements.
Belinda D.
www.theassistedlivingspecialist.com
Start with a small number of hours of home care, then gradually increase as needed to 24/7 care. Always try to get patients to do as much as possible for themselves to keep up morale, and keep them independent as long as possible.
Maryanne S RN, BSN, CCM. Continuity Care Home Nurses, Inc.
www.cchomenurses.com
As a hospice nurse for the past decade, I would recommend utilizing the comfort medication that your nurse suggests if it is warranted. Also, utilize the hospice benefit early so the patient or family member has a very comfortable last six months of life.
Jared L
www.HospiceAlliance.Network
www.ILLNESS.support
Think about accessibility, not only for the elderly loved one’s residence, but for your own home and other relatives’ homes as well. Easy access to bathrooms, smooth, even flooring, and chairs that provide support, are not only safer for your elderly loved one, but for everyone else as well.
Finding and engaging with caregivers and facilities
When navigating living options, having someone to guide you can be key in finding the most appropriate assisted living and negotiating best pricing and services for my clients.
Become familiar with the common language of eldercare. It is important to know and understand key words and definitions that are being used. When in doubt, ask AND check out LA Elderly’s list of terms.
Clarify what is included and what is “ala carte” or additional costs before you sign a contract. Inquire if any additional services can be included in the monthly cost. Some residential facilities will have things like laundry included in monthly rates.
When moving a loved one into a facility for the first time, it may be best to maximize services for the first few weeks or first month in order to make the transition as smooth as possible. Some facilities may include extra support at the beginning, others may charge fees. When in doubt, ask.
Read contracts and agreements carefully to ensure a basic understanding of costs, important terminology, and cancellation policies.
A little appreciation and kindness go a long way. Go above and beyond to thank caregivers, share their special qualities with their employers, and be the first to contribute to the annual holiday collection.
Burnout among caregivers, even professional caregivers, is real. Watch for signs of overwhelm among caregivers. Even a short break can help put things in perspective.
It’s very important to give caregivers breaks, especially for lunch, as they cannot be expected to work non-stop. It’s also best not to do “live in” care – if you can afford the two 12 hour shifts instead, it’s much better to care for patients this way. I tried live in care and found staff very burnt out and not attentive after a while. Best to do hourly care whenever possible.
Maryanne Sawoski RN, BSN, CCM. Continuity Care Home Nurses, Inc.
Reassess the needs of your elderly loved one and of the family caregivers on a regular basis to ensure that the needs and level of care align.
It’s important that they see and feel you are on top of things as far as being responsible for advocating for your elderly person’s needs. At the same time, it’s important for caregivers and workers in the facility to feel appreciated by little extras, whether it’s a cup of fancy coffee or a few hours off.
Dr. Renee B, Clinical Psychologist
Spend time with caregivers before they begin working with your elderly loved one to tell them about the individual they were not just the one they are now. Tell their story, share their background, their hobbies, their milestones, the names of loved ones. Share pictures, art, and anything else that can help the caregiver see them as the person you know and cherish, and who is a beloved member of the family.
Engage in consistent communication with caregivers and those in management positions. Discuss the best ways to share information. Is it a shared document? Is it a weekly email? Is it a daily text? Also, discuss the difference between sharing information “411” and emergency information “911.”
Find out about the process of getting time outside on a regular basis. Is there an outdoor area for residents? Can a caregiver’s duties (whether they work in a facility or in a home) include spending some time outdoors with the elderly loved one?
Tools and strategies for caregiving
Demonstrate an understanding of caregiving through the following tools: hands, words, eyes and presence.
Dafna T
Help your elderly loved one find purpose every day. Even if it is a small task, it is monumental to them.
Have a list of topics available for conversation. Sometimes a short conversation about the weather or a meal is better than no conversation at all.
Have a movie night with a beloved movie from your elderly loved one’s past. Watching a movie takes little planning and may be engaging for them to watch.
Play favorite music in the background for comfort and familiarity.
“In our family, my sibs and I divided roles up. Since I’m the one in town, (“boots on the ground”), I’m the COO, my sister is the CFO and my brother is the CTO-Chief Technology Officer. It helps to clearly define what each one of us is responsible for and AND helps to keep us from feeling overwhelmed. We also keep in touch in a single group, and have scheduled Zoom calls.”
Ruth A
It is vital to have a Power of Attorney. One reason is so you can make sure you have access to all online activities, especially when they involve finances. Check accounts regularly, discuss inconsistencies with your elderly loved one, and report concerns to the correct individuals.
Create normalcy around moments of grief, overwhelm and loneliness. It is all a part of the journey.
Simple photobooks of family members serve many purposes. Make them often and share them with your elderly loved ones.
If your loved one is able, find a restaurant that you can frequent that has easy access for wheelchairs and walkers, has favorite foods, and compassionate and patient servers and handicapped accessible bathrooms. Once you become familiar with the eating establishment and they become familiar with you, you can have little successful outings to create memories.
Support Independence: encourage and support their independence as much as possible, allowing them to make choices and decisions for themselves.
Belinda D
www.theassistedlivingspecialist.com
Get a binder and divide it into sections where information can be organized. Consider the following sections: Medical information, Bills, Emergency numbers, names and locations of important documents, signed agreements with caregivers, placements etc. A shared folder among family members which includes important documents is also a good idea.
Practice Compassionate Communication: Communicate with compassion and understanding, actively listening to their feelings and emotions. The key is to provide love, care, and attention, allowing them to age gracefully and with dignity.
Belinda D
www.theassistedlivingspecialist.com
Bringing a favorite food snack when visiting an elderly loved one. Food can be reassuring, calming, regulating, and bring forth positive emotions.
When things are going as planned, this is the time to think about what the signs are that will signal help is needed and where you can turn to for help. It is better to be proactive and have this information so that when you need it, you have it. When things don’t go as planned, it is taxing emotionally and you may not be in your best brain state to make calculated decisions.
Double check that you have the signed copies of the following documents:
- A Last Will and Testament-a legal document that details wishes regarding property and assets after an individual’s death.
- An Advanced Health Care Directive- a legal document that is shared with medical personnel. It includes wishes about health care if the individual is unable to make the decisions.
- A Durable Power of Attorney for Asset Management-a document that authorizes an agent or chosen individual to manage financial affairs if the individual becomes unable to manage them.
- A Grant of Authority to Health Care Agent-a legal document which allows an individual to work with medical professionals on an individual’s behalf, accept or refuse medical decisions, and have access to an individual’s medical records.
- A Declaration of Trust–a legal document used to establish the primary details of a trust
Consistently be on the lookout for activities and items that can help overcome boredom. Don’t be afraid to consider virtual technology!
For special events (weddings, birthdays, holiday parties) consider hiring a caregiver to be with your elderly loved one so that their physical, emotional and social needs can be met and you can also enjoy the event.
Self-Care Tips for the Caregiver
Set aside time each week for connecting, even if it’s just a walk with a friend.
Dafna T
Take time for yourself at the end of the day, even if it is just 5 minutes. Be gentle with yourself because you are doing a huge job as a caregiver.
Tatiana B
Make time for yourself!!! Book a mani/pedi, massage, walk, game of cards all out of the house. Take time for you! Make time for you!! Schedule the time for you otherwise it will not happen.
Allison B First Class Senior Care
The hardest parts of Dementia – name calling, crying, hitting-leads to frustration and hurt that can cut deep. Give yourself extra grace and compassion.
Plan for 15-30 minutes of quiet, alone time each day and use the time whether you think you need it or not.
If you don’t take care of yourself, you won’t be able to give your loved ones what they need.
Don’t feel guilty for having to make difficult decisions on behalf of your loved ones, you’re doing the best you can with the information you have. No one expected you to be their caregiver, don’t feel guilty for moving them into assisted living. If you are not the most qualified caregiver, try to find someone who is more qualified than you are.
Practice compassionate communication: communicate with compassion and understanding, actively listen to their feelings and emotions. The key is to provide love, care, and attention, allowing them to age gracefully and with dignity
Belinda D
www.theassistedlivingspecialist.com
Celebrate wins no matter how small.
Spend time building your own “combating loneliness muscle” by spending time outdoors, volunteering, engaging with others, listening to the messages your mind and body are giving you.
Do brain and body healthy activities on a regular basis, including weight bearing and balance exercises, getting adequate sleep and hydration, and engaging in personally fulfilling activities. There is a lot the caregiver generation can do to maintain independence.
Create a system of notifications for supplies beyond prescriptions that your elderly loved one might need so that you don’t have to go out for an item at the last minute. Nothing is worse that having to drive out late at night or in the rain to pick up an essential item.
Come up with a “mantra” that you can say before a stressful event with your elderly loved one. Something like “may I have the strength to be patient” or “may I hold on to the big picture.” The mantra won’t solve everything, and you may even feel like you are falling short. But, a mantra gives you a place to channel and focus feelings of stress in a positive direction.
Navigating through community resources
It was very difficult to engage with some community resources because of the rudeness or tone of the person/agency I would reach out to. It made me deter from getting assistance but because of my persistence, I was able to navigate things better. Don’t give up 🙂
Tatiana B
When I took care of my father for 10 years of 24/7 care, I went through various home care agencies (including my own Continuity Care Home Nurses) and found many companies that were not checking caregivers out too carefully. It is critical to find an agency that does thorough background checks and reference checks. We hire only experienced caregivers, which is critical in caring for home care patients. I was most comfortable with Continuity Care as I knew we covered worker’s compensation and paid employment taxes. It is critical to find companies that hire “employees” not independent contractors.
Maryanne S RN, BSN, CCM. Continuity Care Home Nurses, Inc.
Reaching out and finding the right people to help you is a positive thing for you and your loved one. It is impossible to do it all on your own no matter what people say about caregiving. Caregiver burnout is sooooo high. As a family caregiver, you still need to live, maybe work, and have a life. Please do not forget that, and your loved one would want you to do so, even though they might not be able to tell you that that is what they want for you. Thus, talk it out and make a plan so you know that going into becoming a family caregiver.
Allison B, First Class Senior Care
Research community resources on a regular basis. Follow them on social media and join the email list. Learn a bit about them even if you are not sure you will use them. Then, if you choose to use a resource, at least you will be familiar with the basics.
Thoroughly prescreen resources and understand whom you trust. You need to know that the individuals you are relying on have your best interests at heart. Go with your gut if you don’t trust someone. Don’t just trust every social worker, doctor, or nurse you cross paths with; this is your family, and no one cares about them the way you do. Do your due diligence and know whom you’re trusting.
It is easier to navigate community resources when one has a clear picture about what is needed. Take time to outline what is needed for the elderly loved one and the family caregiver before engaging with community resources. This can save time, energy and financial resources.
There is no question that is too basic or irrelevant. Ask all your questions.
Use social media as a resource. Ask your friends for advice and recommendations. Joint Facebook groups. These social media users will know your struggles well.
Take a bit of time to research places and ways to purchase supplies. Although it may be time-saving to have a facility be responsible for purchasing supplies, it may not be the most cost-efficient. In the end, you may choose to have a facility be responsible for supplies, but at least you will have made an informed decision.
Consider the role of religious and/or cultural organizations in providing support, guidance, and entertainment. Many of these organizations are eager to do something for the elderly, especially around the holidays.
The emotional part of being a family caregiver
It’s important to take time for self-care too so you don’t get burnt out.
Dr. Renne B Clinical Psychologist
Outings and celebrating special events can be stressful on a family caregiver. To protect you, bring another individual to help with caregiving and have a plan for your elderly loved one to leave should things become overwhelming for your elderly loved one.
Make a plan and let your children know about it. Do not assume that they know what you want and how you would like it to be executed. Discuss it and do not keep it a secret. Make it a natural part of life so it is not taboo. It is hard to talk about, but it is a natural part of life, so make it that way. By having this information as the family member, it will give the family caregiver at least one less thing to have to worry about.
Allison Beale, First Class Senior Care
If you are new to taking care of an elderly family member, allow yourself time and space to grieve the loss and change of the relationship and make time and space to accept the new relationship.
LIsten to what is being said and what is not being said.
There will be moments of bonding. They may be few and far between but they are there. Try and notice them even when times are tough.
Be aware of the likelihood of moments of caregiver sadness, loneliness, fatigue, anger, grief, and isolation. Give yourself permission to step away from the role even if it is for a short amount of time.
No one prepares you for the importance of timing and access to accessible bathrooms. It is worth anticipating these needs.
Advice for living in the sandwich generation world
I would say that it takes its toll, especially seeing a loved one’s mobility decline, but know that with patience and explanation/support, you can provide them with the things that they need.
Tatiana B
Understand that living in the sandwich generation can be a grieving process where we all go through stages of denial, grief, anger, hopelessness, and acceptance. It can be a sprint or a marathon.
Learn time management skills. Also, try to find activities that can involve your parents, kids, and even grandkids like a cooking project for holidays.
Dr. Renne D B, Clinical Psychologist
Take care of yourself, because no one else will.
Karin F
Caregivers must take care of themselves. If the caregiver ‘s needs are neglected, it will be very difficult to fulfill his/her duties. In the end, all suffer.
Susan F
Prioritize time management. Use tools and strategies to keep track of each family member’s activities, appointments, and events.
Find ways to celebrate life events and holidays in ways that meet the needs of your elderly loved one. Perhaps a big Thanksgiving celebration is overwhelming, but a smaller dinner with Thanksgiving foods may work better, or a small birthday dinner may be a better choice instead of attending a child’s birthday party.
Understand that their are different types of “sandwiches:”
Traditional Sandwich– refers to caregivers of two generations–their own children and their parents.
- The Club Sandwich–refers to caring for three generations.
- Adults in their 30s and 40s who have young children and are caring for both aging parents and grandparents.
Or
- Adults in their 50s or 60s, who provide care for their own parents, their adult children and grandchildren.
- The Open-Faced Sandwich– includes others (not just the immediate family) who are involved in elder care.
Which type of Sandwich are you?
Help children understand in age-appropriate ways the roles and responsibilities of family caregivers as well as the changes in an elderly loved one.
Caregivers are often at a stage of life where they take care of everyone but themselves. Make sure you build and maintain healthy habits, especially around movement and mobility.
The sandwich generation is a group that is not necessarily a place where one wants to be BUT helping others navigate through the process can be healing.
