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The Race of Endurance

Monday July 31, 2017

The Race of Endurance - 8 Things Every Dementia Caregiver Should Know for the Path Ahead

I have heard it said that caregiving is not a sprint but a race of endurance. Maybe you’ve just begun the race, but you’re already feeling out of breath. Or perhaps you have been caring for a loved one for several years and are thinking, “I’m too worn out. I just can’t do this anymore.” Caregiving is hard, and even though the road ahead sometimes looks impossible, you’re going to make it! Here are 8 things every caregiver should know for the path ahead.

As always, if this blog sparks any questions or if you would like to talk about your specific situation, give us a call at 901.854.1200 or email our Social Worker, Sheri Wammack, at sheri@pagerobbins.org. We would be happy to answer your questions!

1. You are not alone.

At times, you will feel isolated. Thoughts like, “No one else understands what I am going through…” or “I am the only one who…” are common for caregivers. But you are not alone. According to The Family Caregiver Alliance, in 2015 there were over 34.2 MILLION people providing unpaid care to someone over the age of 50. That is a lot of people who are in your same boat. Seek out a support group. Find those friends who understand, so you can share with one another and have someone to run alongside.

2. Lean on others: Accept help. Ask for help.

In our opinion, no one can/should caregive alone. Every caregiver needs assistance and an occasional break. Friends and family are often willing to help, but they do not know how to help you. When friends and family say, “Let me know if you need anything,” take them up on it. Ask for a friend to visit and chat or to sit for an hour to give you a break. Ask someone to bring a meal to your home. Come up with a wish list of things others can help with. Then, when someone asks, “How can I help?” you have an answer ready. Here’s our blog post on creating a caregiver wish list if you’re interested in learning more.

Also, seek the help of professionals. Professionals in the field can help you navigate the waters. They know resources you might not and can be a good source of information for you.

3. Don’t put off making decisions for fear of making the wrong decision.

Many caregivers put off making decisions about care because they worry about making the wrong decision: “Mom needs more care than can be given at home, but I just can’t decide which facility would be best.” Putting off these decisions can cause more work for you because Mom needs more care than you can provide, but you continue to do it and wear yourself out.

As a caregiver, there are so few decisions you cannot take back. For example, you decide to move your parent into Facility A, and a month into it you realize that it isn’t a good fit. Life is not over. Move Mom to Facility B. Or you decide to let the physician start your dad on a medication, but a couple of weeks into it there are some negative side effects. Call the doctor to discuss it, and stop the medication.

When you lay your head on the pillow every night, if you can honestly say you made the best decisions that you could for yourself and your loved one, then, you did the best you could. Tomorrow, you might change your mind and make a different decision. That is OK. You are making decisions based on the information you have, and it is enough. You can change your mind later.

4. You are not perfect.

You were not perfect before becoming a caregiver, so why should you be perfect now?

You will handle situations wrong. You will say the wrong thing at the right time and the right thing at the wrong time. You will react in frustration rather than love. Cut yourself some slack. You will still get mad, upset, and frustrated because you are human and you have emotions. Try to learn from your mistakes. Try to take a breath when emotions overcome you. Try to step back and realize that your loved one is not purposely frustrating you.

5. Find joy in the moment.

Caregivers often stay task-oriented: Mom needs to get a bath. I need to clean up the mess from breakfast. It is time for Dad to take afternoon meds. Spending all of your time focusing on tasks will rob you of your joy. Look for joy in the moment: When liquid dish soap gets put in the dishwasher and the kitchen is filled with bubbles. When Mom remembers your name. When the grandkids have Dad laughing uncontrollably. When life feels normal.

It is so important to hold on to your sense of humor. There will be moments that are just funny, and it is OK to laugh, reminisce, and enjoy. You bear enough struggle and heartache. Choose joy. Make space for joy. Invite it into your home and daily living.

6. This too shall pass.

When you just can’t take it anymore, when your loved one is being so incredibly hurtful, when you are screaming inside… know that this too shall pass. This moment of frustration, irritation, unbelievable sorrow, and anger will pass. These bad feelings may return, and the same situation may arise again, but this too shall pass. To date, you have a 100% success rate at making it through all tough situations.

7. Be realistic. Pick your battles.

You can quickly drive yourself crazy expecting life to be perfect. There will be bumps in the road and days when things just don’t go right. Expect it. Don’t set yourself up for failure. Scheduling 3 appointments in one day may not be the best idea. Mom may insist on wearing her pink polka dot shirt with her red striped pants. Who cares? At least she is dressed.

Try to avoid arguing over small things. There will be plenty of things to argue over later. If the outcome isn’t life threatening, give in, and change the subject.

8. Make yourself a priority.

It seems easy for someone to say this without knowing your personal situation, but know that you MUST make yourself a priority. You MUST take time for yourself, time in which you are not a caregiver but just YOU. Make time to go to your own doctor’s appointments, so you can maintain your health. Make time to invest in your relationships with your spouse, children and friends. Make time to do the things you enjoy.

You may not be able to give the time you used to, but you should set aside some time. Some days, it might be 5 minutes alone on the porch swing, others it might be a few hours, and others it might be a week-long getaway.