COPD Caregivers & Loved Ones

As a caregiver, you need to stay calm. Being the calm person in the room can be incredibly helpful for your loved one as he/she is trying to recover from a shortness of breath episode. It may seem like it is something that you cannot do, but without a doubt, you are capable of more than you think. Stay focused and keep peace in the room. What are your thoughts? Do you have any additional tips as a caregiver? Or even as a patient for a new caregiver? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] There is something that I have learned from many years of having been a co-caregiver for my mother. You can do more than you think you can. Your desire to help the person that you care for will determine much of your ability to take care of them. How I knew I was fit to give care I remember when I was a teenager, my grandmother sliced off part of her thumb. Mom and I quickly went to her house to help her. As I watched my mom carefully try to clean it before placing the bandage, I could feel the nausea coming. I wanted to see what she was doing, but I really needed to step away. Now fast forward more years than I care to admit. Mom had a hard time with skin tears. It was just a few years ago that she had a horrible skin tear in the middle of the night, at my house. My dad called for me to help, and when I saw it, I was amazed at how calm she was with that much skin peeled away. She let me know that she would not be going to the emergency room, and asked me to help. I had taken note of the way that a nurse had bandaged her before, so I just took a deep breath and got to it. It was not easy. I cannot describe how hard it was, knowing that what I was doing to help her was also causing her pain, but we knew that it had to be done. What traits do caregivers have? This was something that I never would have thought that I could do. I never had a desire to be a nurse or doctor, but when mom was diagnosed with COPD, I was thrown into a role that is similar, caregiver. Caregivers are the emotional support, medicine dispenser, bandage wrapper, steady hand and patient advocate. We are lifters of the physical body and moods. We are always on, even when we are away from our patient because we are constantly thinking about them. Unless you were a pulmonary doctor or nurse before becoming a caregiver for someone with COPD, you will never feel fully capable in every situation. However, your love for the person that you care for will give you the strength and the desire to learn what you need to know and to do the best that you can. I should say that there are some people that physically cannot handle taking care of someone, and in those cases, there will need to be someone else that can help out. In most cases however, you can do more than you think. Learning about yourself in the process You will learn more about yourself and your patient than you ever thought possible. You will have new limits to what you are willing to do. One day you will look back and say, “I did not think that I could do that.” Regardless of your ability to do a task, if your heart is in the right place, your patient will know it. When all is said and done, your love will have said it all. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Most of us know about children who care for aging parents, and how we switch roles later in life. In our case, reversing roles with COPD came early. It was a bumpy transition as we worked through every phase from diagnosis, to treatment, to long-term care. We learned a lot about each other, and also learned some valuable lessons along the way. I hope my tips help you maintain healthy relationships during this phase. It’s a process Very rarely does COPD lead to a quick downturn in health. Instead, it is a stage of life where a person is gradually unable to take care of certain details in life. Initially, mom was able to take charge of most everything. She set personal health goals for quitting smoking. She lived in our childhood home and began cooking more nutritious food. She was able to pay her bills and keep a budget. Over time, cooking and cleaning became difficult. With planning, she was still largely in charge over the next 20 years, and we gradually took on more and more responsibility for caring for her. [native] What is really best for everyone Some families go along with a “whatever makes each person happy” mindset. It may be healthier, in the long run, to look at what is realistic. By assessing the parent/child relationship, everyone can know what role they will play. I was more administrative, so decision making was my forte. My sisters and brother had different skills. One had a lot of time freedom, one was a great cook, the other lived close by. These types of things are important to know. I was not going to be the one to call when she ran out of denture cream. I was definitely the one to oversee doctor’s appointments. Looking at what was best for every family member brought some relief. We weren’t all bumping heads. Acceptance If one person is not able, or willing, to help out, they should speak up. Otherwise, there is a chance of resentment or passive-aggressive behavior to begin. This kind of communication ends up hurting everyone. Make room, and accept that each individual in the family will help out in the way that is best for them. Setting high expectations, or telling someone that they "should" do something, may end up causing them to make excuses. Instead, allow them to tell the truth about how much they can contribute. Respect We sometimes think of respect as something we give to someone who has earned it or deserves it. Mom had earned our respect simply by giving birth to us. Every human is worthy of respect. Hopefully, the family unit can find a way of working together at this stage of life. If there have been any problems, they will certainly arise. Our family had more than our fair share of them, and we worked it out. Reversing roles with COPD When a parent becomes helpless, everyone may be able to pitch in and do their part. It’s much like the helplessness we experienced as children. Our parents took care of our needs, and we get to return the favor. It became part of our lives as we began reversing roles with COPD to help mom out. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],It's safe to say that not all caregivers agree on how to take care of their loved ones. This can pose a few serious problems, especially as COPD progresses. In the beginning At first, a difference of opinion might be which day of the week to book doctor appointments. Maybe one can only be available on Tuesdays, while the other can only be available consistently on Fridays. Now imagine that a routine doctor visit results in a series of appointments that were all booked on Wednesdays and Fridays because of the limitations of the office. Now one caregiver is available and stays in the loop, and the other will need to take sick time from work, no matter which appointment that they attend. This causes extra stress and results in getting most of the information second-hand. Later stages As you advance into the later stages, a difference of opinion could affect the quality of end of life. Emotions can get high as major decisions need to be made, but it is important to remember that the one that needs to be considered most is your loved one. Watching the caregivers fighting adds stress to an already stressful situation. I know that if my mom sensed that my father and I were arguing about anything, it really affected her. She would begin to worry about us rather than concentrate on getting better. An example of the right time to fight would be in a situation of actual life and death. This could be a time that your loved one cannot speak for herself/himself. Maybe you know more details and have a better sense of the fears that your loved one has concerning the end of life. If at that point, the wishes of your loved one are being ignored, that is the right time to stand up and voice your opinion. Pick your battles It's more important for you (the caregiver) to be the peacemaker than to be right in a trivial argument. This does not mean that your opinion does not count, nor does it mean that you should always concede. What it means is that you must learn to pick your battles and only passionately fight for what you know your loved one wants or needs. Imagine with me for a moment that your loved one is sitting in a room down the hall, and you are arguing with the other caregiver about vitamins or a setting on the dishwasher (insert your own trivial argument). During all of this, your loved one is crying because of the ugly words that are being spoken. You may never even know the full impact that these arguments have on your loved one, especially the ones that you think were not heard. Questions to ponder Sometimes it's hard to stay silent. Sometimes everything inside of you just screams that something isn't right. That's where you must learn to discern the right battle to fight. Ask yourself just a couple of questions to determine the importance of the situation: 1. Is this a matter of life and death? 2. Will the outcome of this argument affect my loved one's breathing (concerning medications, treatments, etc.)? If you answered yes to either of those questions, you probably should voice your opinion, but here is the thing: You need to express your opinion with respect. You cannot forget this. A posture of respect and sensitivity will keep hurtful words away and give the best environment for dialogue and good decisions. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],As a co-caregiver for my mom, I thought about her health constantly. I spent countless days thinking about what I should do, wondering if there was anything else that I could do. I prayed a thousand times (probably more) that God would spare her having to go through the end. I encouraged, and I cried. I loved deeply, and I learned to laugh at the strangest things. I am stronger than I thought As a caregiver, I was the careful driver, always trying to take it easy so that I didn’t scare her. I was the detailed packer, never wanting to forget medication or spare oxygen. I learned to live with my cell phone, never turning it off and panicking if it was forgotten. I made career choices to keep me closer, and made it clear, when my husband proposed, that he should not even think about asking me to move for a long time. I found out that I am stronger than I thought. I could do more things for her than I ever imagined. I learned how to give her shots, change her bed (with her in it) and give her a shower. I learned how to pack the car like a puzzle for a trip, and I taught her how to wear her BiPAP machine, even though she was terribly claustrophobic. No words to fully describe It was so incredibly hard, but there is no amount of money in this world that could come close to the worth of taking care of my mom. There were times that I could see that she wanted to give up, and maybe she would have if I had not continued to encourage her. The memories, the talks that we had, the strength that she showed, the way that she would meet me in the kitchen after I had worked a late shift, just because she could, the way that she loved my kids, my husband and me; there are no words that can fully describe how much that is worth to me. That was my life as a caregiver. [native] A way of life You need to know that being a caregiver becomes a way of life. It makes the number of choices smaller and some of the decisions harder. It causes sleepless nights when your loved one is in the hospital, and it brings amazing joy when they exercise courage and remember that life is precious and meant to be lived. You will cry. You will pray. You will become the voice of your loved one, literally and figuratively. You will learn to keep the atmosphere of a room positive, and you will become very aware of stress levels in yourself and others around you. You will learn to use disinfectant wipes and hand sanitizer seemingly hundreds of times a day. As an advocate, I can tell you all of this because I have been there. I have seen what stage 1 looks like, and I have seen the end. I know that what I have been through can help you as you love someone through the stages of COPD, even if it is nothing more than letting you know that you are not alone. You can do it. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

COPD Caregivers & Loved Ones

Caregivers, Stay Calm

Can I Be A Caregiver?

Reversing Roles with COPD

When Caregivers Don't Agree

From Caregiver to Advocate

The Importance of Taking Care of YOU

Community Poll

Basics For Caregivers: Medications

Basics for Caregivers: Exercise and Respiratory Therapy

Basics For Caregivers: Terminology

Basics for Caregivers: Equipment

My Initial Thoughts As A Caregiver