CF Happens

The topic of caregivers and caregiving has been on my mind quite a bit lately. I’ve come across different reels or posts on social media regarding caregiving. They have shown what it takes to be a caregiver and what they sacrifice as well.

Being the sick person, I am so thankful for my husband for being the great caregiver that he is to me. As I’ve said before, he prefers being called a “CFers husband” verses a “caregiver.” His reasoning in saying that I…”I just do what I’m supposed to do for my wife. That’s just what a husband does.” No matter what you call it, I’m thankful to have him by my side in my life with this CF journey.

It is not lost on me the mental and physical load he endures being my person. If you are not a caregiver you really could only imagine the things that go through a caregivers minds when it comes to their loved one who is sick. In a sense they can deal with the stages of grief while their loved one is still here. You can imagine the roller coaster that can be and how physically and mentally draining that is.

Stress might be one of the top emotions they feel. They worry about the future or the lack of a future, the outcome of different testing or procedures all while feeling a lack of control in it all. Of course they also feel guilt. They often feel like they aren’t doing enough or doing the right things to help their loved one. I’ll say this, as the sick person, sometimes there’s nothing you can do to help except to be there showing/reminding the sick person that you are there and that you love them unconditionally.

Many times caregivers feel guilty or selfish for taking time for themselves. I tell my husband all the time to take his me time at the gym or time with his buddies. I don’t want him to lose himself while taking care of me. If he doesn’t take care of himself, he won’t be able to take care of me the way I need. That’s not to say that there hasn’t been times when I just want him to be with me because I’m struggling mentally or I’m just scared with where I’m at health wise. My husband is my safe place, my “safety blanket,” so to speak. He helps keep me calm in stressful situations surrounding my health.

I know there are plenty of times that being a caregiver is very frustrating. Of course sadness, anger, exhaustion, burnout and anxiety come along with that as well. If you’re a caregiver and you feel like you’re losing yourself, take time to feel the feelings and don’t push them to the back burner. They will definitely come back full force when you least expect it and most likely when you are needing to be at your best. Do something to help you deal with these feelings and emotions. Obviously, I’m a big advocate for counseling. It helps so much having an outside person to give you insight and ways to cope and deal with your feelings and emotions. It’s not worth being angry, irritable or absent a lot of the time.

Being the sick person and needing the help from others is not an easy thing. You don’t know how much I would love to be able to work again, I miss feeling like I had a purpose in the work force. I feel guilt knowing I need help. I don’t want to need help. I would do everything in my power to be a “normal healthy person.’ I would absolutely love to be able to walk more than a city block without needing to stop to catch my breath when we’re out and about. Same goes for being able to climb flights of stairs without stopping, just to name a few things.

The fact that I know the amount of care/help I’m going to need is going to continue to be more and more, does not make me happy. I feel guilty that I cause my husband, or others who has jumped in to help out when needed, any stress and to be exhausted.

I also carry a guilt that I know I’m going to die one day most likely due to CF or complications of transplant (rejection), etc. I know people are going to hurt and be sad over my passing and that makes me sad. Please don’t do the typical thing and say, “we are all going to die one day. I could get hit by a bus.” Yada yada, I’ve heard it all. When you are born with an incurable genetic disease, it’s kind of a given what the end looks like for me. I feel like I need to try and “prepare” people for when I die. I don’t want people to hurt but it’s a given that it will happen. Mostly, I feel so guilty/bad that I will one day no longer be here with my husband and kids. It’s just the harsh truth folks.

There were years that I didn’t want to get close to people or let people get close to me because that meant that was another person that would have to deal with my death when it happens. Now, I’m an open book so that people with CF, families of CFers or even other diseases can try to understand what the person with CF is really going through and feeling. Trust me, I don’t have it all figured out…not even close.

I’ve been in a funk with my depression for a month or more. Some days are better than others. I know being the caregiver of a person who deals with depression is difficult. If you, the caregiver, don’t personally deal with depression or mental health issues in general, it is foreign to you and you don’t know what to say or do. Honestly, just say, “I don’t know what to do to help you.” Just be there for them in whatever way they need you. Trust me, if I could make my depression go away with a snap of my fingers, I would have done that a LONG time ago. I keep on pressing on, some days I am able to push harder than others.

To bring this post to a close, I just wanted to say that caregivers deserve all the recognition for being selfless and willing to care for their loved ones. Your sacrifice is not lost on the people you are caring for. We just don’t really have the words to express our love and appreciation for all you do for us. THANK YOU!!! November is National Caregivers Month, but I didn’t want to wait to share what’s on my heart.

Until next time…