I Am Helping
I Am Helping
I am 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.
--Receive breaks from caregiving.
To find the support and strength to continue.
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.
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.
- 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.
Consider annual weekly breaks--investigate short-term respite stays in your community's nursing homes. Or, ask relatives to take over the caregiving role for a week or two every year or every two years. Continue to take daily, weekly and monthly breaks, whatever you can manage. Keep up with your own interests and hobbies as best you can. Take time to enjoy the paradise you built in Stage II.
4. Use your Solutions Fund.
Make deposits and take withdrawals, using the money for boredom, breaks and back-up plans.
5. 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.
6. Continue to learn about your caree's illness or condition.
What's next for your caree? Who and what can help you keep up?
7. 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.
8. Manage the budget as much as you manage the care.
As care needs increase, so does the budget. When you caree has funds to pay for about 18 months in a nursing home, then take note of the situation. This is the time to consider nursing home placement, when your caree's funds will afford the best choices. Hold a family meeting, tour local facilities, consult with professionals, such as an aging life care specialist or Certified Caregiving Consultant. You may decide this isn't the time to decide. That's okay. It's important to be aware that sometimes the budget determines the decision on where a caree continues to receive care. It's most important to be aware of your choices and to make the one that's right for you and your caree.
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.
9. Continue writing in both journals—yours and the other about your caree.
10. Forgive yourself for your bad moments and bad days.
They will happen. After they do, give yourself a clean slate to start over.
11. 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.”
12. 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.”
13. 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.
14. 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™ ~ Video: Ask, Stage 1
~ Stage 2: The Freshman Caregiver™ ~ Video: Find, Stage 2
~ Stage 3: The Entrenched Caregiver™ ~ Video: Receive, Stage 3
~ Stage 4: The Pragmatic Caregiver™ ~ Video: Welcome, Stage 4
~ Stage 5: The Transitioning Caregiver™ ~ Video: Allow, Stage 5
~ Stage 6: The Godspeed Caregiver™ ~ Video: Treasure, Stage 6
~ Our The Caregiving Years Tools, released with our eighth edition of The Caregiving Years handbook, help you find the answers and solutions right for you. Purchase The Caregiving Years PDF version to complement the tools. You also can purchase the paperback on Amazon by clicking below.
~ Your Tip Sheet: The Caregiving Years, Six Stages
~ Your Tip Sheet: The Caregiving Years, Your Steadies to Continue through The Caregiving Years
~ Read LivHOME's blog post about The Caregiving Years
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.
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