Self Care and Caregiving
I am an active boomer who is nearing 70. I still jog, I’m active in the Denver community and I recently started www.agingwelldenver.com. In addition, I am a caregiver for my older husband who I love dearly. We have 2 children, 2 grandchildren, and three great-grandchildren. Babysitting is something I do occasionally and my husband and I enjoy all our family but, it is not enough for me. I have always felt a need to be purposeful and serve others in a way that will help improve all our lives. It is a struggle and a balancing act. I encourage you, if you are also busy and active and caring for someone, to understand that this emotional roller coaster is normal. You may find some help from what we post on the caregiving board of our www.agingwelldenver.com Pinterest.
I have learned to seek out support in different ways so I can continue to navigate through my life, but I will admit that I often become momentarily paralyzed. There are ways to be a caregiver and have a social life, but that doesn't mean it's easy. I can get caught up and cry or get emotional over the loss of the relationship that my husband and I used to have. Then I compose myself and bounce back. I hear my dad's words in my head “Don’t take life too seriously. Have fun while contributing to society. You can’t take anything with you. Live life as you want to be remembered."
It sometimes takes extra effort, but it is easier for me to live my life with his words in the back of my mind. Sometimes, planning your social or work life while caregiving is exhausting because you are constantly adjusting. I have my down moments certainly, but I make sure to still have fun. I make the extra effort and time to see friends and family. You can too. Find the energy to do things that bring you joy or peace, you won’t regret it. I heard a great quote from a friend who has suffered the loss of a child and other tragic events in her life. “Champions adjust.” She says it to herself every morning. She is 80 plus years old.
My husband and I have learned a lot while navigating these new, sometimes trying times together. We make sure to be on the same page in terms of his care and my self-care, and that's the result of many, many conversations and constantly evaluating what is working and what isn't. There are always detours, moments of temporary immobilization and high anxiety, but we do not allow ourselves to be controlled by these. We adjust and move on. You can too with a thoroughly planned support system. Believe me, I am not saying that any of this is easy, in fact - I had an anxiety attack while writing this.
I want to share with you some of the tips and resources that we have followed or that have helped us over the years.
When dealing with a diagnosis, research online to get information about the disease and see what interventions and treatments might work or are recommended. Be cautious with what you find online and don't drive yourself crazy but find out what you can. Nearly every disease has a reputable resource online.
The next step is to write down questions so you can get answers when you have your next visit. Make sure you keep them all together and never be embarrassed to add as many as you can think of. If you are looking at short or long-term solutions it's important to have an advocate or care provider with you at all health provider visits. To do that you must sign a release of information for the person you want to assist you. Make sure every visit you have someone designated for release of information. You can usually discuss this with the front end staff at the office. Everyone needs to have this in place because of the HIPPA requirements. Rarely will you ever be able to get information or ask questions about a person who is being treated for a health problem by anyone in a medical practice because of HIPPA laws.
Whether it's you, a friend or loved one, you need to plan for who will be your critical support or advocate. What if you’re in a serious sporting or car accident and are unable to speak for yourself or comprehend what the medical choices are? You must have someone authorized and it can be a person from a specialized guardian organization too. That person can be a friend, spouse, parent or organization when in your twenties and thirties, but as you age that designee may change. You should review who it is yearly. Additionally, you need to have that person designated with medical power of attorney and financial power of attorney. You can find these powers online. Have a look at Five Wishes www.agingwithdignity.org/five-wishes.
Anyone dealing with a chronic incurable disease of any kind (MS, Parkinson’s, epilepsy and so many others), can reach out and get palliative care as it worsens. We use Optio which is part of The Denver Hospice. Do your research well because there are for profits and not profits providing this service. Denver Hospice and Optio are sponsors and partners whose services we have used long before I started www.agingwelldenver.com. Palliative care does not mean you or a loved one is dying, it means support of care. I counsel with their social worker and know they can guide me through my life and the care my husband requires along with our internist. They work with most medical insurance plans. To me, this is an important part of managing and supporting our lives. Usually, a referral must come from a doctor. Our doctor views them as a partner, not a threat.
Figure out who you want as your caregivers and always ask them first. Never assume that someone will be up for this task. This will change throughout life too. They may not be family. There is a wonderful site called www.atlasofcargiving.com. It will help you figure out a plan for caregiving for your friends or family and eventually for you. You absolutely need to have someone else listed as able to share medical information and manage care.
Keep a journal. In it, write down something you are grateful for each day. This helps you get rid of negative feelings. Learn to meditate or practice mindfulness each day. If you are unsure of how to start this journey, it is easy to learn how. Even closing your eyes for two minutes and thinking of people or pets, or experiences you are grateful for can really make an impact on your day. There are lots of online videos and books on how to get started.
You should try to have a family internist or generalist as well as a specialist for a particular disease. Use them for resources and support. Healthcare providers can often guide you and your personal designee to understand needs and expectations that you or your family member should have. They may not offer this, so you always need to ask questions and write down answers. It will help you figure out a plan for caregiving for your family member. Even if you are not yet 50, look at AARP online or call. There are so many local resources. The challenge is knowing about them. We try to list updated resources under caregiving and veterans.
This last one, I have definitely learned the hard way! When you are a caregiver it is a necessity to write down daily everything for the person receiving the care. Such as when and what pills to take, what activities they have each day. As well as what you are doing each day. It helps especially when someone has memory problems but is just as good to do no matter what the health problem is. This is a great way to reduce confusion and keep track and reconfirm who is doing what. You can do this for each day and each week. There are apps to help you keep track of all of this if you are tech savvy, but they all have pros and cons.
The most important piece of information as a caregiver is not to allow yourself to become socially isolated. I have seen too many people do this and the results are not pretty. Caregivers are 15 times more likely to become ill, have many health and memory issues, as well as severe depression in part because they become socially isolated. It is hard to reach out to friends and keep active when you are a caregiver for someone with serious health problems. Yet it is critical to keep connected with friends and family. Whether it is once a week, monthly, whatever it takes to stay connected to family, work, organizations, and friends. You will live longer and healthier because of doing this. Make dates that keep you socially active. Sometimes I have tremendous guilt about taking time out for business, social activities and ways to provide self-care. With that said once I am out of the house after providing coverage, I feel much better. You cannot control everything.
A major part of being a good caregiver and maintaining your own mental health is to identify issues and not get sucked into guilt or being judged by others. It is easy to allow that to happen. Self-affirmation helps and so does a good cry and deep breaths.
Remember that only you can live your life. We get one shot at it and it is up to you to take control of your life as much as possible. Planning is the best way to do that. Of course, there will be detours. Every day is a new opportunity. Remember you are not alone.
On this journey, many others have experienced and are going through similar circumstances, but none will be yours. The key is to move forward and not get stuck in a negative mode. Reach out to me or on our forum and share your ride (anonymously if you wish). Ask questions too. You may have ideas and tips that will benefit all of us. Check out all the caregiving resources we list and our information on Pinterest.