I’m taking part in WEGO Health’s Health Activist Writer’s Month Challenge
Day 9 #HAWMC – As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?
Today I’m thrilled to present the first guest blog post on Blackbird at Night, written by none other than my better half, Carmen Waterman, from Rainbow Travellers Tarot! Thank you, Carmen! – Jane
When I found out that today’s theme was an opportunity to share tips for caregivers and those who support someone with a chronic and sometimes invisible illness, I was happy to jump in and be a part of this awesome month of advocacy.
Before I get into some of the heart of this topic because truthfully that is really what this is going to be about, I want to say something about the importance of your role. You may be the parent of a child with a disability or illness, a parent of an adult child who is ill, or you may be the person’s child, spouse, other family member or friend. You have the opportunity to truly make a difference in their life. There is a beautiful quote that I believe really sums up the role of caregiver; “To the world you may be one person, but to one person you may be the world.” Truer words were never spoken and if you ever felt the passion and calling of making a difference this is a role that you were meant for.
I’m going to take a bit of liberty with today’s prompt and expand on it a bit. The one I was originally going to write about was “As a parent to a child(ren) with health conditions, what do you hope you are doing right?“ I feel qualified to discuss this at length as I have a child who suffers from depression, anxiety and was diagnosed with bipolar disorder. I know how hard it is to see your child suffering and obsessing over things that most children, teens and young adults never experience. I’ve seen through her eyes a world that is cruel and judgemental, where there is little hope to succeed. I’ve also seen the world this way myself, as I have fought the battle with depression personally so I can truly understand how dark and hopeless it can seem.
Having said that, I didn’t want to limit it to this area because I also wanted to share the things we can do as caregivers for our spouses and friends who are struggling. My beloved wife has Sjogren’s syndrome and depression. I have seen first-hand the havoc that these illnesses play on someone’s spirit and their ability to find joy and meaning when things that they once did may no longer be an option.
One of the most important aspects of being a caregiver is that you have to “care.” You may say that is a given, however when I see the word used in conjunction with our Health Care system I have to say the word is not synonymous with what it truly means. So what does caring mean? It means treating someone with kindness and compassion. It means that at the very core of the reasons behind your support is a desire to help.
One of the most important qualities as a caregiver you will need is understanding. This comes in many different ways and will grow over time as you learn more and more about how the illness affects your loved one. Make time to learn about the symptoms and ways to support someone with the illness but remember that everyone is different and not all people will experience an illness in the same way or degree. It is important to have a general understanding of what your loved one is struggling with and then take your cues from them. I also want to add a note that, too often, there may not have been a diagnosis. Our medical system is failing so many of its patients as there aren’t answers yet for the epidemic of suffering that continues to grow. I hope one day this will be different, however, in the meantime, one of the best pieces of advice I can give you is to believe them. No one wants to be sick! No one wants to be depressed! No one can just snap out of it or attract the healing they need by thinking positively! For a really good read on this topic please see Jane’s post here. Know that the person you are caring for has tried to explain to doctors, specialists, and numerous others the conditions of their illness and the greatest gift you can give them is believing what they are experiencing is real.
Many of the chronic illnesses that so many are suffering with today have similar faces. Disorders overlap each other with multitudes of symptoms and so I thought I would talk about some of the common ones that are seen so many times over and over. They strike at a person’s ability to enjoy life and are where your role as a caregiver can make the biggest difference.
Chronic Fatigue – Now everyone has times when they are tired and exhausted. What I want you to understand is the difference between that experience and chronic fatigue is critical. Imagine, if you will, that you have been running for your life to get out of a dangerous situation, and all your adrenaline has since been pumped into your system and depleted. Your body feels drained of all energy, you feel that even to lift your arms up, much less get up, would take more stamina than what is available to you. You may want to do something but physically there is no way your body will be able to begin much less sustain any kind of activity. Now trust me, these words really don’t even come close to explaining the level of exhaustion that exists when you suffer from chronic fatigue but it is a starting place for you to realize that whatever you want to do to support the one you love has to be something that does not take physical activity on their part. So what can you do?
- First reassure them that it is important for them to rest – this needs to be done with compassion – no one wants to be this tired – no one wants to not be able to go out and enjoy the things that they once did.
- Make a list of activities they enjoy which could be done from bed or while resting in a comfortable chair or couch like:
- Watching favourite movies
- Listening to music
- Sitting on the deck and watching the birds, stars, and even just getting fresh air
Remember that while this symptom of their illness is going to restrict what they can do, that who they are as a person is still the same and making time to find the things they enjoy in a way that does not further deplete their limited resources of energy can be invaluable in creating a day that had moments of joy in it for them.
Chronic Pain – Probably if you have lived at all you will have experienced a time in your life when pain has seemed extreme. Knowing it won’t last and the relief that comes when that pain is no longer there is immense. Now imagine if the pain you feel is never going away because that is what millions of people today are suffering with. Chronic pain causes sleep disorders, depression, and fatigue (yes the pattern of overlapping symptoms is very real). One of the other horrendous attributes of chronic pain is that the smallest amount of activity can send you into an extended and increased pain flare that knocks you out for days. Chronic pain is merciless and gnaws at a person’s ability to function. Pain meds that are needed just to tolerate the levels of pain are essential and yet the side effects are also difficult. So what can you do?
- Reassure them that it is okay and important to take their pain meds especially when you can see they are hurting. You may need to keep track of when they have had meds last as the cycle of pain can dim their ability to remember when they last had them.
- Comfort them in the best way you can:
- Help them to get comfortable
- Bring them heat pads and/or cold packs (whichever provides relief for the type of pain they experience)
- Run a bath with Epsom salts, offering to help them in and out of the tub if needed
- Reassure them that it is important for them to rest. Sleep might not be possible so look at the options above for things to do while resting that would help to take their mind off the pain
- Make sure they eat. When someone is hurting it is really difficult to take care of the most basic needs and your help in looking after these details are important to them being able to tolerate the meds as well as keep up with basic nutrition.
- Remember that chronic pain can be debilitating and that it is still important to watch for signs of increased degrees or something different that may be new. You may be the one that needs to recommend, encourage and perhaps at times insist that they go to the hospital just to be sure. It is always better to be safe than sorry.
Depression – This particular illness and symptom can manifest in many different ways. In of itself it can be life threatening and is not something that can be cured by “positive thinking.” Yes, there are treatments like CBT (cognitive-based therapy) that can help to make improvements in someone who suffers from depression, but by itself is not a cure. Depression is not something someone can snap out of and it certainly is not something someone wants to feel. Trust me on this one!
It is not supportive to think the person is just highly sensitive and needs to develop a tougher skin. Depression on its better days can just make someone want to withdraw, and on its darker ones can convince someone that life isn’t worth living and that everyone would be better off without them. It goes beyond feeling blue to not having the will to interact and to hurting so badly inside where no one can see, to sometimes lashing out at themselves in hurtful and physically scarring ways. So what can you do?
- Be there, be present, and reassure them that this moment is not all that there is to life
- Sometimes when someone is crying and seems inconsolable just being there with them can make a big difference
- Believe in them, and try to help them to see that. Often depression robs a person of any feeling of self-worth and they truly need you to help them to see themselves through the reflection of your own heart
- Help them to seek and get help. You will not be able to be their caregiver and their counsellor. This is truly important and a significant lesson that I had to learn and is especially true when it comes to those you love the most and particularly your child (no matter what their age). What you can do is help to make sure they find someone in a counsellor that they can connect with. There are many good and bad ones out there, and just because they are professionals does not mean they are the right one that will be able to help.
- Find ways to encourage them to do something different, watch a movie, read a book, get outside, anything that might help them to get out of their head and into a different space even for a short period.
- Remember that it is not your fault they are struggling with depression. Another lesson I had to learn and sometimes even now have to remind myself. Be kind and gentle with them and with yourself.
Now having said all this, I haven’t even touched the surface of the things we can do to help and support those we love who are ill. No one wants a loved one to be suffering and I’m not saying it will be easy, especially at times when they are having bad days, flares, or increased difficulties with their illness. What I do want to say is the things you do, the way you interact with them, the compassion and understanding that you share along with even little things can brighten their day and can change their quality of life and how they experience the world. Always remember that they are much more than their illness and they have hopes, dreams and wishes that are important too. Don’t let them forget that either.
I would also be remiss to not include the joy of being there with someone you love, in both good times and bad. There is no greater gift than to see someone you care about smile when they have been struggling, to share a good laugh about something totally silly, to sing out loud to music and songs that you both love, and even to just hold each other when it all seems just a bit too much.
Take care of yourself and you will be in a better place to enjoy the world and each day with your loved one despite the challenges of their illness. Remember to try and plan fun times even if it is a picnic in bed with the window open to bring in the fresh air. Life is always worth living!