Burden, what is a burden?

I am not super sure that I am good at picking one out. Recently I was listening to a neighbor, she talked about how her mother lives alone at 96 y/o and is financially independent. She doesn’t go to visit and she wishes that her mother would move into a nursing home or assisted living so that her mother had company and she could rest assured that her mother is getting  support and help. The mother has not asked for additional help or visits. My neighbors siblings do live near their mother and are happy to go by and visit the mom and don’t want her moved.

But my neighbor is a retired nurse and really would feel much better if her mom was in a facility.

She then told me that she has talked to her kids and told them she doesn’t want to be a burden. I asked her what a burden means to her – and she said “my kids know what a burden is.” Although I don’t doubt her, I am not sure I know what a burden is AND I am not sure it is the same thing for everyone.

My neighbors mother living on her own causes said neighbor worries and is a mental-emotional burden for her. At the same time she hasn’t talked about the burden on her kin of keeping her mother with her kids.

How do we have meaningful discussions about the time when we will need or want more support from the people we love? I don’t think these conversations are just for growing old, I don’t know that everyone gets that privilege, they are for everyone.

We are so removed from aging and kin keeping. With the separation of the generations we no longer have natural daily exposure to aging, to needing help, OR to getting help. Even talking about needing care is off limits for most people. At the very least it’s an uncomfortable conversation that in a lot of cases NEVER HAPPENS. Most well prepared planners talk about money, wills and end of life planning, but people don’t just “drop dead” anymore. We get older than we used to and we stay alive and old and active for way longer!

Starting the Conversation

Knowing what you want or what you think and sharing that is a great start!

Asking questions is really powerful.

Making these Conversations part of Normal Life

Start WAY before you feel the conversation or the care is needed.

Talk about care and death in a personal and theoretical way. It doesn’t all have to be about what you know or don’t know.  Include conversations about values, self identity (what parts of you are important to you) – what makes you, you.

More Questions to ask yourself and the people you love:

What is the most important or the main aspect of my life that I value most?

    • independence
    • autonomy
    • comfort
    • companionship
    • adventure
    • learning
    • health
    • to complete the lessons you are here to learn
    • leave your children prepared for a good life after you are gone

What would you like to spend your time doing? What do you imagine retirement, old age will be like – best and worst case scenario?

What is your favorite pastime?

If you could have a retirement, later life, death that was better than you ever hoped what would it include?

As life slows down, if you are fortunate enough to get “very old” what do you imagine will be most important:

  • your contribution to your community or family – DO
  • participation, socializing, connection – EXCHANGE
  • what you can produce or give or gift – GIVE
  • opportunity or adventure things to try – EXPERIENCE
  • comfort, support, help, security, safety, luxury  – HAVE

There is really no GOOD or BAD answer, but there is a right answer. If you don’t know the answer, keep asking – clarity will come. It’s the kind of thing that when you see or hear it, you will know it’s the “right” or true answer.

Once you know what you want you still have the requirement of sharing that information. We have to know and be known in order to find success here. Once the conversation is started here are some ideas about topics that might help:

Are you comfortable with hired help for things like companionship, bathing and other activities of daily life?

Do you have any deal breakers? Anything you really don’t want to happen:

  • Your spouse or children OR specific child helping with bathing, toileting, feeding
  • Menu or diet preferences or desired specifics
  • Only want male or female doctors or caretakers

Your deal breakers can be anything AND they can have caveats. *Only female caretakers unless it’s an emergency or my caretaker of choice is burdened by my care, or *no carrots ever unless I am no longer able to object or have forgotten I don’t like them. I want to have full autonomy unless it would result in suffering for me or my caregiver. I think you get it.

Would you rather care come to your home or would you rather live in a senior community or care home? Do you understand what you trade for living in a planned community? You’d not always get to make the schedule, you eat when food is ready and do activities when they are offered. People open doors, often without knocking and in many cases the facility decides if and when you are woken up, what medications you take and when. For some it’s really nice not to have to manage these things, for others it can be a tough transition.

Do you want to move to live near your children/family or are you OK with not having family or friends close (your friends or family may move away from you)?

Do you feel like some amount of help or care taking is not a burden? How much effort or inconvenience are you willing to be to the people in your life? Understanding that healthy relationships are reciprocal but that doesn’t mean that they are always “even-steven”. Our parents cared for us, and/or we care for our children (not even), they love us, and if we are lucky we will be old enough someday that we will need to be cared for again too.

At what point are you no longer comfortable with being cared for at home, visited everyday/week/month?

What are your deal breakers and what are you willing to let the people in your life decide. What you wear, who you spend time with, what you do with your time, whether or not you are pulling your weight…. If you don’t feel like you are useful, helpful, good company, grateful enough, being heard, do the people who love you get a vote or not?

I know for many, reading things like this can be emotionally charged. No one (in my experience) wants to feel like a burden. The people that I have had the honor of caring for or sharing life with in those later years felt like a blessing. I got so much out of every moment. I asked for help and sometimes there was enough help and sometimes there wasn’t. The questions above are all things that have come up in my life or the lives of people I love(d).

I knew a family that decided that managing money and medical care was a burden and would create friction. This family decided to have a distant relative manage one and another relative manage the other.

Another family allowed the main caretaker (a sibling) to be selected by default. The one that lived nearby and visited the most ended up with the majority of the responsibility and hands-on work but all of the siblings (a collective) made the decisions together.

After all of this I think it is important to mention the consequences for not knowing when something goes from an amazing fulfilling opportunity to a BURDEN.

It’s so profound and common that it has it’s own name… The Caregiver Effect

The Caregiver Effect refers to the physical, emotional, and social consequences that caregivers experience as a result of providing care to a loved one with a chronic illness, disability, or aging.

Physical Effects:

  • Increased risk of chronic diseases, such as heart disease, stroke, and diabetes
  • Fatigue
  • Sleep disturbances
  • Weakened immune system

Emotional Effects:

  • Stress
  • Anxiety
  • Depression
  • Guilt
  • Frustration

Social Effects:

  • Isolation (more deadly than drinking and smoking)
  • Neglect of own social life
  • financial strain
  • Relationship difficulties

Factors Contributing to Caregiver Effect:

  • Severity of the care recipient’s condition
  • Duration of caregiving
  • Caregiver’s own health and well-being
  • Availability of support systems
  • Personal characteristics, such as coping skills and resilience

Consequences of Caregiver Effect:

  • Reduced quality of life for caregivers
  • Increased risk of caregiver burnout
  • Negative impact on care recipient’s health and well-being

Prevention and Management:

  • Seek support from family, friends, or professional organizations
  • Join support groups
  • Take care of own physical and mental health
  • Use respite care services, hospice, palliative care support
  • Educate oneself about the caregiving process
  • Set realistic expectations

Caregiving can have a significant impact on the well-being of caregivers. Understanding the caregiver effect and its consequences is crucial for supporting caregivers and mitigating the potential risks. By taking steps to prevent and manage the effects of caregiving, caregivers can maintain their own health and well-being while providing the best possible care for their loved ones. Maintain relationships with people that you can be honest about your experience and who will be honest and gentle enough to be an effective mirror. WE CAN’T SEE OUR OWN BLINDSPOTS.

Having a plan for caregiver support BEFORE YOU NEED IT can make all the difference!

Situations change, we grow and get old. If you have a plan it may need adjustments as the caregivers age, health, living and financial health change.

One last thing that was really impactful for me was a study completed by University of Pittsburgh researchers that found that elderly caregivers had a 63% higher mortality rate than younger caregivers. Another study have found that as much as 70% of caregivers (of all ages) died before the end of the study and that the negative effects of caregiving effect the caregiver for as much as 3 years after the caregiving ended.

I hope these studies will spark action and communication. Caregiving is well worth the expense, it is fulfilling, and can have a positive effect on multi-generational care settings. In fact, I have seen positive impact on adult children and their families when they share in the caretaking. In this country and in this day and age, most caregiving is being done by one person, with limited support, with low visibility. The cure, in my opinion, is communication, openness, community, and in order to talk about caregiving we have to be willing to talk about needing help and caregiving.

I hope that these ideas spark conversation and healing around needing or wanting care and around death.