Helping Caregivers When There is Nothing You Can "Do"....

What you can do to help the caregiver when there is nothing you can “do”…

For me, personally and with our odd illness, here are the things that I would find special, meaningful, or helpful.

1) Educate yourself on the illness or disease: Dealing with a horrible disease that is also somewhat of an oddity is gut-wrenching and quite lonely. You hear prayers for the “normal” things, like cancer, surgery, etc., which is wonderful and absolutely should be happening. But, when people don’t understand something, they tend to avoid it. When something is so awful, it’s hard to sometimes acknowledge, so you avoid (I am beyond guilty of this.) but it just leaves you feeling more alone. Being able to speak with someone who is semi-knowledgeable about the mountain you are facing makes you feel less alone. Educating yourself also helps to avoid the faux-pas of things like “Is your mom doing any better?” or “I hope she gets well soon.” I smile and say thanks (usually) because I know their heart is in the right place, but I want to scream “NOOOOO, she is not and will not be getting any better! In fact, she will keep getting worse and worse until she dies!! No chance of better and no type of treatment, so we/she just keep enduring. While I appreciate the sentiment of the inquiry, a 30-second internet search would help you actually relate to the caregiver vs surface level conversation. This connection really won't take time or effort on your part, but will mean the world to someone who is dealing with something most people will never have to incur (praise God).

2) Keep an eye on me, notice if I am “not myself”, and tell me (lovingly) what you have observed: Caregiving can drown you. You lose the sense of what you need, what is best for you, and how you might be neglecting others in your life. You don’t mean to; it is just so overwhelming to want to help a loved one and do what is best for them when you feel so helpless. Add to that seeing firsthand on a daily basis how someone you care for is being destroyed and having to do *truly horrible* things to aid them or care for them, watching them lose all their dignity, and being helpless to stop it is soul sucking and depressing to say the least. You are trapped (although you want to help them) in a nightmarish situation which you can not escape from and that has no expiration date. It is scary and lonely. Anyone who knows me, knows I avoid emotions. I have found out the hard way you can only do that so long before you have to deal with it. I began antidepressants about 5 months ago and they have helped tremendously, but I have needed them much longer…I just didn’t know it! In my mind, depression and anxiety fit a certain description – a box I didn’t fit in, but as I began to educate myself on it I realized I had let my mom’s illness overtake me. A few close friends helped me to recognize that I was struggling with anxiety and depression when they pointed out the way it was presenting in me and that those traits were atypical for me. I am thankful that they were able to see what I was not because I feel better and am thinking more clearly and positively than I have in a long, long time.

3) Give me grace and accept my “No.”: I can not do all the things I used to do. Sometimes it is about time. Sometimes it is because I am so empty that I have nothing left to give. Sometimes it is because the best I could do was to make it through the day today. If I am not performing up to par or I am absent from an event I would normally attend or I have to give you a no that would normally be a yes, extend me some grace. When your schedule is continually hijacked and you are never “free” because you never know when you might be called to help (because it always takes two people at this point) it feels AWFUL. You feel you have become flaky, undependable, wishy-washy and unreliable. When you feel like you need to provide an excuse or that people are disappointed, it really is salt in the wound.

4) Don’t assume that the caregiver and the patient have a positive relationship: Many caregivers previously had a strained relationship with the individual they are now caring for. The boundaries (healthy or not) the caregiver had set for self-preservation are scrambled, damaged, or flat bulldozed. Caregiving for someone who has hurt you or is extremely difficult is exhausting. If the caregiver opens up to vent or just talk – LISTEN WITHOUT JUDGING. More than likely, they know the patient much more intimately and know them for who they are before they were sick. Hearing things like “Well, just think of what they are going through.” or “You have to know it is hard for them as well.” is NOT helpful and makes you feel guilty and selfish for having emotions or feelings of your own. A figurative slap to the face is still a slap to the face no matter if the person is struggling or not. The caregiver is literally giving beyond what they have to give. They are empty and trying to pour from a cup that has been empty for a long time, more than likely. Listen, comfort, and don’t make them feel bad for having needs, wants and feelings of their own. Most people have buried those emotions for a long time before they let them erupt. If they are comfortable enough to share them with you, know have chosen to trust you and believe you are “safe”, and you are special to them. It’s hard to be raw and opened - Be that safe person for them.

5) Pray, where we can’t: Personally, my prayer life took a detrimental hit when all this began. I didn’t know what to pray. I didn’t know how to pray for this situation I couldn’t even wrap my head around. I recently read a book that helped my prayer life get back on track, but praying for my mom and her illness is still a struggle. Not because I don’t want to, I just can’t. I do my best, I promise I do, but it is so hard when you are in something so horrible and confusing. It is hard to say “thy will be done” when you are living something that you think that in no form or fashion would this be God’s will. (By the way, I know that God didn’t do this to mom. I know that Satan plots to destroy us by any means possible – illnesses, accidents, injuries, etc. I also know that God can use anything or any trap set by Satan to somehow bring glory to Him and His Kingdom.) But being the earthly resident that I am, I struggle to grasp this sometimes. Watching something awful unfold can cripple you and I/we need to be lifted up and pleaded for when we struggle to find the words.

** As I mentioned before, we are an odd situation. For example, if our situation was normal, an offer for respite care would be WONDERFUL. Caregivers need a break or the opportunity to go to the grocery store or to mow the grass. Meals, visits, calls, etc are all wonderful in a situation that is not so off in left field. Anything to let them know that they are not alone, not forgotten and important to others. Caregiving is lonely and exhausting – the smallest thing can mean so much.