Stage 3: The Entrenched Caregiver

You are helping a family member or friend.

Who are you?
Your involvement with your caree is almost daily — if not constant. Your caree may live with you or your involvement means that your day is structured to be available to your caree. You begin to wonder, how much longer can you live this way? Your mood is sometimes upbeat; you’re proud you’ve been able to provide such wonderful care and make decisions that support your caree’s best wishes. Sometimes you feel melancholy; why you? You’ve been mourning the loss of your caree’s abilities and functions and often long for the days before caregiving. And, you’re tired.

Your Keyword: Receive
–Receive help — from anyone who offers. If that help proves unhelpful, make a different decision going forward.
–Receive breaks from caregiving.
–Receive support.

Your Challenge
To find the support and strength to continue.

Your Purpose
To develop a routine, create a familiar schedule for both yourself and your caree. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your caree–this stage may be the most difficult for both of you. The changes you prepared for in Stages I and II are now a reality–you have become a lifeline to a family member or friend.

In addition to your caree’s routine of care, create a routine for yourself. In your routine include time to manage the unexpected that pops up during your day; a ritual which begins and ends your day; and a “healthness” activity to nurture your spiritual, emotional, physical and mental needs.

Our tools, below, can help you figure out what you can receive. Access more of our Caregiving Wheels.

As an “entrenched caregiver,” what can you do?

1. Determine your limits in your day and in your role.
How long can your caree remain at home? What’s your comfort level in providing care in your home? For instance, some family caregivers feel uncomfortable providing care when their caree becomes incontinent. Others determine they can provide care at home as long as insurance or Medicare benefits offset some of the home care expenses. Others feel they can provide care as long as their other family members, like spouses and adult children, will put up with it.

Just as important as understanding your limits in your role is recognizing your limits during your day.

Consider:

  • Which tasks and responsibilities feel like a struggle?
  • What times during the day do you feel the greatest amount of stress?
  • When do you find yourself running late, losing your temper, scrambling for a solution?
  • What do you find yourself dreading or hating?
  • When do you find yourself in a tug-of-war with your caree?
  • What times of the day are tough for your caree?
  • When during the day does your worry about your caree intensify?

When you understand your limits, you can look for help to manage what’s beyond your limits. Understanding your limits will ensure you, your caree and your family will stay in a safe place. Your limits aren’t your failures but opportunities to put in place solutions to stay successful.

Everyone has limits. What are yours?

2. What are your caree’s limits?
Understanding your caree’s limits will help schedule your day and organize your help. Limits will change regularly, so be aware of change in tolerance and fatigue. Not sure how much help to schedule? Add more than you think. You can never have too much.

3. Continue regular breaks.
Whatever you can do to take a break, do it. If a longer break, like a week away, is impossible, take a break from worrying every day. Give yourself the gift of a few moments to say, “I’m okay. We’re okay.” When you take a break from worrying, you give your body and mind time to relax. Making relaxation a priority will help your health. Keep up with your own interests and hobbies as best you can. Take time to enjoy the paradise you built in Stage II.

4. Create your Respite In Place Plan.
You may have times when leaving to take a break feels impossible. When you have to stay, make a break right where you are. Use our Respite In Place to create a space to call your own in your home, your yard and your community. We offer regular live virtual sessions so you can talk out the possibilities for your respite space with us. Learn more and download your Respite In Place Plan.

5. Use your Solutions Fund.
Make deposits and take withdrawals, using the money for boredom, breaks and back-up plans.

We hold free monthly virtual meetings to help you create a Family Emergency Plan. Join us when you can to create and then regularly update your plan.

6. Keep up with a support system that reminds you that you are okay.
Your support system could be a support group or your knitting circle. When you feel like you belong, you’ve found your support.

Consider enrolling in our Care Coach pilot program and receive three months of email or text support for free.

7. Continue to learn about your caree’s illness or condition.
What’s next for your caree? Who and what can help you keep up? In addition, what supplies can you add to your caregiving closet that will help today and tomorrow?

8. Increase help as your caree declines.
Become comfortable with adding more help as more help is needed. You may think, “I’m okay keeping the level of help as it is.” Unfortunately, keeping the level where your caree was rather than where he or she is will hurt both of you. Note the struggles in the day, then work to add help for you and your caree to manage the struggles.

9. Manage the budget as much as you manage the care.
As care needs increase, so does the budget. The challenge is understanding how long to budget for care. Although you may not have an end date for caregiving, you will be able to get a feel for how long your caree’s money will last. Review the budget regularly so you can keep track of spending. Suggestions for you:

  • You will have the best choice of nursing homes when your caree can pay privately for at least 18 months. Even if you really don’t want to consider nursing home placement, still be aware of the costs of the good facilities near you or your caree.
  • Ask for guidance from an elderlaw attorney familiar with Medicaid benefits in your caree’s state. You’ll want to be aware of the rules for qualifying for Medicaid and when your caree may qualify. Be sure to work with a reputable elderlaw attorney who follows the guidelines.
  • Hold a family meeting and consult with professionals, such as an aging life care specialist or Certified Caregiving Consultantto be aware of your choices and to make the one that’s right for you and your caree. We also can match you with a Certified Caregiving Consultant, who can provide a free 30-minute consult to talk out the care needs and the budget.

If you care for your spouse and consider nursing home placement, know that a certain amount of your assets will be protected and that you will not have to deplete all your assets to pay for your spouse’s care in a nursing home. Visit Medicaid.gov and search for “spousal impoverishment” to learn more.

10. Continue writing in both journals — yours and the other about your caree.

11. Forgive yourself for your bad moments and bad days.
They will happen. After they do, give yourself a clean slate to start over.

12. Set boundaries which protect your time, your values, your well-being, your priorities and your self.
Examples of communicating boundaries include:

  • “I’m taking a two-hour break after lunch. I have everything that you’ll need set up in the living room. Thank you so much for helping me enjoy this time. I’m so grateful for your support.”
  • “I’m uncomfortable with the tone of our discussion. Let’s table our talk until tomorrow.”
  • “I’m booked, so have to decline. Thank you for thinking of me.”
  • “I’m only available to take your phone calls between 6 p.m. and 8 p.m. If you call after 8 p.m., I’ll let your call go to my voice mail and I’ll call you back when I can.”

13. Give you and your caree room for your difficult moments and bad days.
When you’re having a tough time, simply say, “I’m having a bad day. I’m taking a few minutes for myself.” When it’s your caree’s turn, say, “I’m sorry you’re having a bad day. I’m going to step away for a few moments.”

14. Hold hands with someone you love.
Researchers with the University of Colorado Boulder and University of Haifa found that holding hands can ease pain. When you’re not sure what you need but you know your heart hurts, reach for a loving hand. If you can’t hold hands because of concerns of infection, close your eyes and create a visualization. In your visualization, imagine you and a loved one holding hands, receiving the peace and comfort the hand-holding provides.

15. Be aware of times when the hoping leads to inaction.
When you find yourself thinking, “I’m hoping the problem will resolve itself so I’m not going to do anything,” then consider instead what’s the best course of action to take right now. Often, talking it out is better than crossing your fingers and hoping that a solution will magically appear.

16. Be ready with answers.
Continue to ask your caree about quality of life wishes. If your caree can’t, then consider what you know based on past conversations and your insights about your caree’s values. You’ll want to know because the health care system will expect you to know. You want to be ready with answers to questions about treatment and care decisions. If you are unsure of the answers, ask for help in talking out the options.

17. Assess risks with prudence.
We continued home health visits for my parents during the pandemic. I understood the risk that they would contract COVID-19. I also understood the greater risk to their health, including a hospitalization, without help. Reassess risks regularly as you gather more information and situations change. I wish risks weren’t part of the experience. Unfortunately, they are. When we give ourselves permission to assess and weigh risks, we stay realistic about the risks. 

18. Be open about who provides help.
The shortage in the direct care workforce and the costs of care will be frustrating and overwhelming. My parents declined help from a home care agency because of the costs so they hired my niece and then my nephew to provide care 12 hours a week. We’ll use the home care agency for back-up when my niece needs time off or is sick. 

19. Plan for a family member (including yourself) to get paid for care.
After my niece found a job and my nephew returned to school, my parents hired my sister to help 12 hours a day. My sister took a Family Medical Leave and my parents paid her the equivalent of her take-home pay from her job. It’s been great for my parents. My sister enjoys her break from the intensity of the rat race. I don’t worry. If you think paying a family member (including yourself) could be an option, check out our planning process to help you or a family member receive reimbursement for providing care: https://www.careyearsacademy.com/paid/

20. Continue to ask anyone and everyone possible for recommendations.
Ask about palliative care benefits during doctor appointments and hospitalizations and when your caree might qualify. Your commitment to finding what you need will pay off.  When it does, receive with gratitude. 

21. An apple a day…
What’s your apple in this stage? You may feel tempted to sacrifice your apple in this stage. Your apple can’t be sacrificed. Your apple is what makes you feel normal, like yourself. Keep it.


~ Stage 1: The Expectant Caregiver™

~ Stage 2: The Freshman Caregiver™

~ Stage 3: The Entrenched Caregiver™

~ Stage 4: The Pragmatic Caregiver™

~ Stage 5: The Transitioning Caregiver™

~ Stage 6: The Godspeed Caregiver™

~ Our The Caregiving Years Tools will help you find the answers and solutions right for you. You also can use these tools during your sessions with your Certified Caregiving Consultant.

~ We can match you with a Certified Caregiving Consultant, who can provide a free 30-minute consult. With a CCC on your team, you have a caring professional who’s been through a similar situation who can help you make decisions, develop effective plans and find resources. The CCC also will offer an empathetic ear so you can vent in a safe place.


Note: I have provided The Caregiving Years to be used strictly as a guide. All situations vary. I encourage you to always consult your health care professionals to discuss your individual situation and the best course of action for you and your caree.


Get Our Books

Leave a Reply

Your email address will not be published. Required fields are marked *