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You’re a caring care partner. Otherwise, why would you be there? And a big part of being there may involve attending your loved one’s doctor visits. It may become more necessary with time — especially as their medical care grows progressively complex due to serious illness, memory and comprehension issues, or even routine difficulties associated with aging.

We see it all the time. An elder loved one wants their daughter to attend a doctor visit because they feel a close family member or friend would better explain medical issues, needs and daily realities. A person living with dementia feels they may not remember care advice (or even to attend the appointment). Someone with a terminal illness feels they need an advocate to coordinate a network of care providers.

No reason for wanting a loved one to participate in doctor visits is too small or unnecessary. It’s everyone’s right to have an appropriate person present. A medical professional may ask you to   step out for certain parts of an exam or consultation, but even then, most understand their patient would feel more comfortable with someone there to listen, document and advise care, if necessary.    

Preparing to Attend a Loved One’s Doctor Visit

As you know, medical consultations and exams go more smoothly when everyone is prepared. Just as a physician must be prepared to analyze medical history and current conditions, your loved one (or you on your loved one’s behalf) must also be prepared. 

Here are some ways to get ready.

Remember the Schedule

Your participation means nothing if one (or both) of you don’t show. We know, it’s hard to remember everything — especially when you’re a primary or central care partner. There may be many appointments with a variety of providers. For instance, if your loved one has Alzheimer’s or another type of dementia, you may see neurologists, psychologists, psychiatrists, geriatricians, primary care physicians, counselors and even cardiologists, not necessarily in any specific order.  

Juggling the day-to-day may seem daunting with doctor visits, household chores, family events, financial/legal planning, grocery shopping (and, oh, what luck, the dog needs to go to the groomer). Mark everything down in a calendar. If you’re not tech savvy to manage an online planner or set phone notifications, a cheap day planner will work just fine.

Update the Medical History

Current doctors should know your loved one’s medical history and current prescriptions. Such information is readily shared among providers and, by law, even with competing health networks. Update and bring your loved one’s medical history anyway. If your loved one is seeing a new provider, it may take time for them to receive the latest and most comprehensive info.

It may seem superfluous. But being prepared could save a grave (and, yes, the literal definition of grave) oversight. It’s vital to know current prescriptions, other treatments and even vitamin/mineral supplements, and how they may interact with others. Even if something new won’t cause issues, it’s important to note if current ones are causing more harm than good. 

Let the doctor know. Task all of the medical professionals involved in your loved one’s care with coordinating to find a solution.

Be Prepared to Listen

You know your loved one well — very well. You know how medications work, how they react physically and behaviorally, what they like and dislike. Of course, those are incredibly valuable perspectives.  But as with anything — no matter how much research you’ve done on WebMD — your expertise may only go so far.

Be prepared to listen during a loved one’s doctor visits. A good physician will take your loved one’s needs and wishes into account. Your medical professional is, well, a professional with years of expert medical training. You may not agree with their opinion. (By all means, seek a second opinion when possible.) But a one-way dialog led only by you will only hinder, confuse and aggravate care decisions that could otherwise be easy, reasonable and negotiable with some respectful discussion. 

Document, Document, Document

Your preparation doesn’t end before the doctor visit. A good care partner should always gear toward continual preparation. One doctor visit prepares for the next. Information gathered at one is valuable information not only for followup visits, but also sessions with every other doctor moving forward. If you learn a valuable insight into a cancer or dementia treatment on Tuesday, the other physician on Thursday must know the plan. (As we said earlier, it may take time for interoffice communication, even in this digital age, considering the thousands of patients a medical professional may see annually.)

Bring a notepad. Inform the doctor you are recording the session for your review later. Information isn’t a weapon, but rather a tool to guide the best possible care.

End of Life Care

There will come a time when care approaches its final stages. Naturally, our loved one’s doctor visits will cease life-saving efforts and prepare for the death transition. It’s inevitable for all of us. 

So be prepared to discuss the end. What resources will your loved one and the care-partner team need? Will hospice be necessary to ease pain? Will the family require a death doula to provide comfort and other services to help the family? There are numerous factors to consider for a loved one to die with dignity.  

Medical considerations may be the least of concerns. Love, honor and spirituality may become priority to prepare you, your loved one, and other families and loved ones for whatever your faith says lies beyond.

Are You Ready for Your Loved One’s Doctor Visits?

Whether you’re attending your loved one’s doctor visits for moral support or as a guiding force for care, your presence is critical to ensuring the most compassionate care possible.  

When you need help, we are here. I am a Florida State Certified Patient Advocate. I help individuals to see a network of doctors, clinicians, specialists and other providers to address specific needs. I work alongside clients to secure care options in a variety of settings. I coordinate and attend medical appointments, if appropriate. I also help care-partner teams to organize important health care, financial and legal documents, as well as prescriptions and recommendations by health professionals.  

Caregiver Support and Resources, LLC, can help you honor your loved one. We have over 25 years of experience with all aspects of life-care planning and can help you and your loved one build a plan that honors everyone’s wishes and needs. We’re happy to provide referrals and guide the process in a caring and compassionate way.

You just heard the news. Your loved one just received a life-changing diagnosis, or perhaps they’re just getting “up in age” and need help with daily living. You now find yourself in the role of a caregiver (well, we prefer the term care partner). How can you do this well?

Care with compassion.

The word “compassion” literally means “to suffer together.” Compassionate care for a loved one happens when you share the pain of illness or advancing age with them. 

Compassionate Ways to Care for a Loved One

Some days will be harder than others. Being a great care partner — especially with terminal illnesses, Alzheimer’s and other types of dementia, and end-of-life care — requires great sacrifice and extreme devotion. But you’ll treasure the better days spent together. 

Always remember: great care for others begins within. And that’s a good place to start.

1. Have Compassion for Yourself 

You can’t give what you don’t have. Show yourself compassion. This may be a new idea for you, so start small. 

Praise yourself for little wins. Did you make your bed this morning? Did you clear the dishes from the sink? Did you hit a deadline at work? It’s OK to give yourself a pat on the back. 

Forgive yourself for mistakes you make. Did you say the wrong thing to someone? Did you forget to put the trash out on trash day? Give yourself a break. Focus on your strengths instead of obsessing over your weaknesses. 

Having this kind of compassion for yourself will help you to better give compassion to others. 

2. Remember the Golden Rule 

We were all taught as kids to treat others as we’d like to be treated. You would like to be treated compassionately, so show the same to your loved one. Honor them and dignify their life (and death).

Consider how you might feel if your roles were reversed. If you were having a difficult day, would you like to be treated with kindness? Of course you would. Consider what needs your loved one has and try to meet them with the same kind of care you would hope to get. 

Show patience when your loved one is moving slowly, feeling sick and in pain, or otherwise having a tough time. Think about it. If it were happening to you, wouldn’t those feel like valid reasons for emotional outbursts and difficult behavior? The experience of physical pain or difficulty coping emotionally may present as anger. They may be embarrassed because they can’t do things that were easy before, or because they are ashamed they need care. 

Show kindness and understanding. It may make all the difference.

3. Serve out of Love, Not Duty

We serve people differently when we see them as a loved one versus an obligation. But our loved ones are exactly that: loved ones. Remember this whether you are caring for a parent, spouse or any other loved one. Focus on why you are caring for your loved one. They are a person you love; not a job. 

But recognize that you won’t be perfect at this. It’s common for caregivers to feel a sense of duty. You may feel a sense of guilt about this. Let it go. You have chosen to care for your loved one. 

4. Give Encouragement

You know how encouragement feels. It can help you see what you’re capable of. It can pull you out of a funk. It can give you a boost toward meeting a goal. It can help you get unstuck.

Give that sort of encouragement and empowerment to your loved one. Tell them about their strengths. Remind them of what they’re good at. Let them know you believe in them. Comfort them in difficult times. 

This kind of support can work wonders for your loved one’s self-esteem. It also lets them know they have an ally who will be with them through times both good and bad. 

5. Touch Can Be Helpful

A good hug or a touch of the hand can make a big difference in providing compassionate care for a loved one. It can demonstrate your concern and love for them. Research shows that touch can influence the way we react, think and respond. Touch has a big impact on our physical, mental, emotional and spiritual health.

But not everyone has the same boundaries when it comes to touch. Don’t assume touch is welcome. Ask your loved one, “Would it be OK if I gave you a hug?” or “Would you mind if I held your hand?” 

6. Practice Active Listening

It’s easy to multitask during conversations, especially in this age of distraction. Put down your phone, turn off the television, or close the book and listen intently to what your loved one has to say. This helps you to better understand your loved one and shows them you care enough to really hear them. 

Repeat what they say. For example, if a loved one is feeling frustrated that they can’t remember names of people they see often you can say, “It must be frustrating when you can’t remember people’s names.” This shows you are listening and trying to connect with their feelings. It also invites an opportunity for them to correct any information you didn’t understand.

7. Think Before You Speak

It can be easy to say the wrong thing. Thinking before you speak can help you to avoid saying things you may later regret. It might be tempting to speak out of anger or frustration in the heat of the moment. Remember, compassionate care for a loved one comes from a place of deep respect and understanding. Practice thinking through your words before they leave your lips.

It’s OK to feel angry, frustrated or sad. Emotions come and go. However, we can choose how we react to our emotions. Your ability to manage your emotions as you speak to your loved one will go a long way in dignifying them with compassionate care. 

8. Take Care of Yourself

Caregiving (care partnering, rather) is demanding work. It’s easy to burn out. Pouring yourself out for others can mentally, emotionally and physically run you down. 

But as I said before, you can’t give what you don’t have. Compassion is hard to give when you feel empty. So take care of yourself.

In the midst of the busyness of care partnering, make sure to eat well, get quality sleep, take short breaks, and do things you enjoy. Consider finding respite care for a few days each week.

Compassionate Care for a Loved One Begins with YOU! 

Care for a loved one, no matter the scenario, can be a mind-bogglingly difficult experience. But you are not on your own. 

Caregiver Support and Resources, LLC, can help you honor your loved one. We have over 25 years of experience with all aspects of life-care planning and can help you and your loved one build a plan that honors everyone’s wishes and needs. We’re happy to provide referrals and guide the process in a caring and compassionate way.

Knowing how to care for your aging loved one is difficult. Is it better for them to have a regimented routine? Or would it be better to let them (and help them) make decisions that are right for them?

The answer may be: It depends. We prefer and advocate the person-centered care model, which lets the individual set their own course with guidance and support from their care-partner team. Of course, there may come a time when decisions must be made on their behalf, but it should align, as best as feasible and practical, to a care plan of their own design.

Let’s get the conversation started by talking about the benefits of two approaches to elder home care: daily routines and person-centered care. 

Elder Home Care: Is Routine Best or Should We Use Person-Centered Care?

What works for one person may not work for another. While here at Caregiver Support and Resources, LLC, we prefer the person-centered care model pioneered by our friends at Pioneer Network, we would never advocate our approach as the only way. Care partners must examine what will ultimately be in the best interest of their loved one.  

Let’s examine the options.

Why Create a Routine for Elder Home Care?

Creating a routine means that you schedule the same activities at roughly the same time each day. The idea is to create a schedule that will allow them to anticipate and prepare for what’s next. This may ease the stress that can come from the unknowns in life. 

You could make a routine that is similar to their current daily activities to make the adjustment easier to handle. A morning routine, for example, could be waking up at the same time each day, followed by taking care of personal hygiene, followed by eating breakfast and taking medication, and then enjoying a cup of coffee with the morning newspaper. 

Routines Can Be Helpful to Some

We are creatures of habit. Creating routines around healthy habits can be beneficial to our loved ones and elders in several ways, including:

• Lower stress: A lack of control of one’s life can create a lot of stress. This is especially true of seniors who are living with conditions that affect their cognitive and physical abilities, like Alzheimer’s disease and other types of dementia. They may be anxious about what will happen next or worried when or if their needs will be met. They may fear they are being a burden to their care partners. A routine eases stress by creating a sense of control and independence. The routine will become internalized in time and they won’t have to spend as much time worrying about what is coming next.  
• Improved sleep: Many seniors struggle with getting good sleep. A routine helps by creating a consistent sleeping pattern. Studies have shown that well-rested individuals are healthier and better rested with a steady routine. Routines fight against factors that affect their quality of sleep, like a lack of exercise, poor nutrition and stress.  
• Healthier eating habits: Planning meals can be crucial to helping our loved ones stay on top of their nutrition. Forgetting to eat or to make the trip to the grocery store are typical problems for elders. Creating a meal plan will help seniors and care partners to stay on track of daily nutrition and dietary needs. Healthier eating also can lead to better sleep and mood.  

Why Use a Person-Centered Care Approach for Elder Home Care?

Person-centered care is not a one-size-fits-all approach. We like the emphasis on individuality for just that reason. Just because a routine is good for one person doesn’t mean it is good for everyone. Person-centered care focuses on the individual — their needs, their tastes, and their dignity. 

Benefits of Person-Centered Care

Person-centered care is holistic, focusing on one’s creative, intellectual, social, spiritual and physical needs. No one person is the same. Their care plan should be custom made to address their whole self. Decisions in person-centered care are made by our loved ones instead of being forced upon them. 

Jackie Pinkowitz, Chair of the CCAL: Advancing Person-Centered Living, and a co-leader of the Dementia Action Alliance and the National Dementia Initiative, said person-centered care includes the following principles from a care recipient’s point of view:

• “I have the right to determine how best to meet my needs.”
• “It must include me, my family and team in decision-making.”
• “My care must be empowering, nurturing and respectful.”
• “My care should optimize my physical and psychosocial well-being.”
• “Nothing about me, without me.”

A Care Plan for Dignity and Respect

We all deserve to be treated with dignity and respect — in life and while transitioning from end-of-life to death. One-size-fits-all solutions struggle to offer that dignity and respect. A person-centered approach offers both along with some other benefits, including:

• Putting your loved one first: It’s not about simply getting through the day or getting through the next task. Person-centered care involves focusing on what is important to seniors. What activities do they like to do? Are there ways they nourish their spirituality? What gives them a sense of purpose? Providing experiences that stimulate seniors can help improve mental health and combat depression.    
• Provides autonomy: Person-centered care allows seniors to make decisions about their own life. Many elders feel a lack of control as their health declines. Their independence also declines accordingly, as they grow to depend on others for care and support. Allowing them to advocate for their own care returns that autonomy.  
• Increases happiness: A care plan that focuses on the specific needs and wants of seniors helps increase their satisfaction with life. Person-centered care helps seniors to meet their goals and provides for their well-being. Happiness and a high level of person-centered care can help add many happy years to a life worth living.  

Elder Home Care Decisions are Hard. We Can Help!

We know making decisions about your loved one’s home care (and beyond) can be difficult and overwhelming. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning, including Board-certified Patient Advocacy, Medicaid Planning & Asset Protection, Referral Services and #WeAreDementiaStrong. We’re happy to provide referrals and guide the process in a caring and compassionate way.

Brian and I were talking the other day about his final wishes.

It’s likely that Brian, my life partner/care partner who lives with Alzheimer’s disease and vascular dementia, will not be coherent or communicative as the end draws near. We’ve made peace with that. But, no matter what, he’d like to be surrounded by his family and friends to enjoy a good celebration of his life … while he’s living. A living memorial service … a living celebration of life.

Of course, that got my mind working. We could really pull that off. That’s something he would love. It’s something family and friends would love. Regardless of his capacity to enjoy it at the time — whenever that time will be — it suits his nature perfectly. He’s a life-of-the-party guy. He would enjoy working with me to plan his living funeral, so to speak, from putting together a guest list to ensuring “I’m Feeling Good” by Michael Buble makes the musical playlist.

Now, being a life-care planner and Board-certified patient advocate, it was far from the first time I had heard of something like this. Most people usually think of celebrations of life or funerals as events that happen after death. But celebrating a loved one before their death is increasing in popularity. 

6 Keys to Planning a Successful ‘Living Memorial Service’

Just ask Joan Paal-Fridley, who was featured in a People Magazine article in 2015 for hosting a “premortem funeral” for her mom, Jean Paal. Jean’s cognitive ability had been declining from Alzheimer’s, and Joan thought it would be wonderful for her mother to enjoy this celebration while she still can. 

“I have no idea how long she may live,” Joan told People, “but her energy is fading, along with her memory, and I want her to know she made a difference in people’s lives while she can still recall memories.”

A living wake can be a great gift to those with dementia and their care partners, those who may (or may not) have a terminal illness, and their loved ones. Here are six things to consider as you begin to plan a living funeral for your loved one.

1. When Should You Hold It?

This can be a difficult decision. It would be best to hold a living memorial while your loved one can still enjoy it, but you don’t want to do it so early that you find yourself considering another event in five years. Allow this to be an event where your loved one can say goodbye.

But don’t get so hung up on setting a date it prevents you from planning and holding the event. It may be helpful to talk with your loved one’s doctor to get a strong sense of life expectancy — or how many of those “golden years” left will likely be “golden” and pleasant.

After you set a date, send out invitations early enough for people to make plans. The idea of a living memorial service may be unfamiliar to many, so be sure to tell people why you’re holding this event. Explain that it’s being held before your loved one’s death, so people don’t get the wrong idea. Give attendees ideas how they can participate — like preparing stories or bringing cherished pictures to share. 

2. How Should You Celebrate?

This is completely up to your loved one. It’s their day. It can be a traditional ceremony that resembles a religious service complete with songs and sacred readings. It can be a banquet akin to a retirement celebration. It can be a simple backyard barbecue. It can be a mix of traditional and non-traditional events. Let your loved one choose the way they’d like to celebrate. 

Set up a time to allow people to share stories and parting words with your loved one. Be sure people know this isn’t a time for roasting or for sharing old grudges. This is a celebration that honors your loved one. You can include note cards where people can write memories and messages to be put in a box that your loved one can read later. Consider hiring a videographer to cover the event for your loved one to watch later. 

3. How Much Should It Cost?

Again, this is your loved one’s party, so there is no right or wrong amount. Consider your budget and also whether or not there will be a formal funeral service after your loved one dies. Traditional funerals can cost several thousand dollars — or more. 

A living life celebration can cost a fraction of that amount. You could then consider having a small and informal gathering for the family after death, which may relieve some financial burden later. Whatever you decide is up to you, your loved one and the care-partner team. 

4. Who Should Lead the Ceremony?

Consider having someone guide the event, like a master of ceremonies. This may be a religious leader if the event is more of a religious ceremony. But this celebration doesn’t have to be religious, if that’s not your loved one’s preference, and can be led by anyone who can lead with care, grace and attention to the guest of honor. The emcee can be a family member, close friend or a professional celebrant. 

5. Where Should You Hold the Celebration?

Again, there is no right answer to this question. The venue will depend on the scale and style of event you plan. It could be a simple gathering at home or in a park. You could hold a service in a house of worship and then hold a reception in the facility’s fellowship hall, if one is available. A banquet hall or a community center would easily accommodate large gatherings. A restaurant or bar could work well for smaller, less-formal gatherings. Consider the amount of guests you will invite, as well as places that may carry special memories for your loved one. 

6. What Food Should Be Served?

The type of venue and event you choose will be a factor in choosing food, or if food should be served at all. Some religious ceremonies, no matter the faith, may prescribe a certain meal or perhaps a style of Holy Communion.

An at-home gathering can involve simple snacks, a good home-cooked meal, or a pot-luck dinner. A gathering at a restaurant will most likely involve food from that restaurant. A banquet hall will probably involve catering. Consider your venue, your budget, and perhaps your loved one’s favorite meal. 

Ready to Plan Your Loved One’s Living Memorial?

No two living memorials will be the same, nor should they be. Your loved one is an individual — one with a life story, favorite stories, favorite songs, favorite people. How you celebrate should be personal to your loved one. It’s their day. Honor them and help them to enjoy the day.  

If you need help, Caregiver Support and Resources, LLC, has over 25 years of experience with all aspects of life-care planning. We’re happy to provide referrals and guide the process in a caring and compassionate way.

They were there for you when you needed them most. Now the roles are reversed. You’re a care partner. You’re the one attending to their needs.  

Your loved one — perhaps your mother, father, spouse, dear uncle, or even someone your age or younger like a sibling, niece or nephew — may be aging gracefully in good health, like a fine wine. Your path may seem relatively easy. Or they may be diagnosed with a terminal illness like cancer or dementia, with every day a struggle physically, emotionally and financially.

In either case, you must honor your aging loved one, because we’re all striving for the same goal: a life and death with dignity.  

Honoring an Aging Loved One with Care, Grace & Understanding

How can you honor an aging loved one? Here are a few ways to honor their body, mind and spirit, ensuring their needs are met. (Helpful hint: you’ll also make your remaining time with them is just as meaningful and fulfilling.)

1. Practice Active Listening

A listening ear goes a long way. Aging brings a mix of emotions. Allowing your loved one to speak freely without judgment or correction helps them to feel heard. It also helps you to understand what they are feeling, even if their words or actions don’t express these feelings. Validate the feelings they express.  

For example, if your dad is concerned about his lack of freedom because he can no longer drive, allow him to address that emotion. It may be to his benefit to no longer drive, but allow him to feel how he feels. 

Empathize with him and don’t critique. Validate him. You can say things like, “It isn’t easy to give up the independence driving gives you. You have a right to be frustrated.” This kind of active listening shows you honor and respect your loved one’s feelings and experience.  

2. Lift Up Their Lives

Your loved one has gathered many memories throughout their lives. Preserve them by capturing their past and present: 

• Memorialize their life in a notebook
• Build a beautiful photo album
• Use your phone to save some audio or video memories

This shows your loved one you value their story. You can get a conversation going by simply sharing recollections from your childhood and asking what they remember from those events. Ask them about the legacy they’d like to leave behind. You can even get relatives and friends to join in. Create a blog where people can leave their own memories and share them with your loved one. These stories could help jog some more memories to reflect upon. 

3. Show Affection

Don’t underestimate the power of touch. A gentle hug or a kiss on the forehead can greatly lift one’s spirits. Even the smallest touches — like the squeeze of a hand — can mean so much.  

And don’t be afraid to share your feelings about your loved one. Tell them you love them. Tell them how much they mean to you. This may help foster some deeper connections between you and your loved one. 

4. Help Them Process

We all die. It’s inevitable. It’s the debt every one of us owes for living. But death produces a lot of worry for everyone involved, especially at the very end when it’s very real. Don’t be afraid to talk with your loved one about their thoughts on dying. 

Consider their emotional and spiritual needs when processing death. Does your loved one have a faith community or leader to whom they can turn? If they aren’t religious, are there other guides that can help them? You could seek a chaplain, as many are trained to guide conversations with people of a variety of beliefs. Many hospice agencies coordinate any necessary spiritual and counseling care for both the dying individual and close family/friends. Death doulas will do much of the same.  

Avoid imposing your own beliefs upon them. Honor them by allowing them to process in a way that is emotionally and spiritually helpful for them. 

5. Let Them Be Involved 

It’s their life. Include them in conversations that involve their future and care. That’s why person-centered care stresses the individual at the center of the care-partner team.  

Feeling powerless over their lives is a familiar feeling to many elders. Allow them to speak their minds about their care, even if you have to make a decision that is not what they’d prefer. Listening to and validating their feelings when making decisions allows your loved one to feel valued. Be sure to respond thoughtfully and avoid sounding condescending or patronizing.

6. Be Prepared

Conversations about the end of one’s life are difficult. Many people tend to avoid them because they don’t like to think about the inevitable. However, planning ahead helps you and your loved one avoid surprises.  

What funeral arrangements can be made in advance? Does your loved one wish to be resuscitated or intubated in the case of an emergency? Will they want hospice care, if needed? Are there any financial or legal loose ends to tie up? These are conversations that allow you to honor your loved one’s wishes and avoid unnecessary burdens later on.  

Let’s Build a Life Care Plan that Honors Life & Legacy

You are not alone. Caregiver Support and Resources, LLC will help you honor your aging loved one. We have over 25 years of experience with all aspects of life-care planning and can help you and your loved one build a plan that honors their wishes. We’re happy to provide referrals and guide the process in a caring and compassionate way.