It’s not a pretty relationship: Self-worth and being a full time carer to your child with a life-limiting illness. There are countless reasons why we battle with depression, and the struggle with our self-worth is just one of those reasons. I’ll narrow it down to what I find to be the top 5 reasons.
So why, the unknowing reader not walking on this journey would ask, would you not have to most incredible amount of self-worth considering the selfless work that you do??!! And I think therein lies one of the reasons.
- 1. Selflessness. Parents on this journey seldom get the time to focus on themselves. When we do get a semblance of free time, we tend to collapse into this state of mental mush. Or we grab the chocolate. And maybe the wine as well. But the gym, a nice afternoon hike through the forest to recharge and recentre, an afternoon shopping for things we don’t need and that are actually for ourselves…those are just pipe dreams to us. Now if a miracle happened and we actually got to do one of those things, we’d probably feel some level of guilt because surely there is something else we should be doing, like taking care of our fragile child. At the very least, that child is on our mind while out of our sight and we are worried about how they are doing.
- 2. Financial independence. Refer back to reason 1 above and the shopping trip for things we don’t need and that are actually for ourselves. It simply doesn’t happen anymore. The majority of us can’t work outside the home because of the demands in caring for our angel with the life-limiting illness. And while I full-heartedly believe that carers such as myself should be paid a decent full time living wage for the demanding, skilled work that we do (may I suggest a nurse’s wage), the fact is we don’t get paid. Please let that soak in, dear reader not in our shoes, that not being paid does indeed affect our self-worth, especially those of us who used to have a professional career and brought in a nice salary. We don’t want to be dependent on anyone or on the State. We want to be financially independent. We can’t. I know for myself, I can attest to what an internal struggle that is! I used to own my own home, had nice furnishings inside the home, lovely landscaping outside that I was able to do on my own. Now, it is all gone. Career is not only on hold but gone quite cold in the years since I’ve been able to work in my field. It isn’t just men who have self-worth tied to being able to earn an income. That is an incorrect assumption.
- 3. Weight. Yes, I am yet again revealing one of the secrets of parents on our journey, especially the mothers – we tend to stress and comfort eat. No, not broccoli and carrots, so go away with that notion right now. Referring again back to reason 1 above. See the mention of chocolate? There ya go. Carbs are also a favourite…sweet breads, pastas, cookies, cakes. Did I mention chocolate yet? Oh yeah, and because we can’t get to the gym or take those hikes (let alone a daily walk!), we don’t get enough exercise. And please, don’t harp on us about it. We know. We know all too well. And there goes another nibble at our self-worth and another pound on our depression scale. Puns intended.
- 4. Health. This reason is multifaceted. To begin with, our own body gets more and more taxed over the years of caring for our disabled child. We lift our child day in and day out in all sorts of angles that the physios say not to do. They don’t live in our homes, though, so really they don’t understand why we have to do what we do. So, there we are with our own bodies breaking down over the years of care. Now add some extra weight (writer clears throat in admission of guilt). Then enter into the equation illnesses that seem to strike caregivers at a higher level than the rest of the population – autoimmune diseases. Myself, I was diagnosed with rheumatoid arthritis in 2012, and two years before that with degenerative disks in my lower back. This very month I discovered I get to add high blood pressure and high cholesterol to the mix. I know, I know, I’m a real mess. Do I even need to refer back to reason 3? Anyway, yes, self-worth is attacked as we see our own bodies not be able to do what we once were capable of doing. It hurts emotionally, deeply, not just physically. We need you to hear that.
- 5. Isolation. You know that trip to the shop to get groceries you took today? That is about the extent of our adventures abroad. We don’t get to have the banter or intelligent conversation or mental stimulation that working outside the home brings. We are often stuck inside our own heads, often speaking solely to our fragile child who cannot converse back to us. Our spouses are away for the day at work or even just off visiting friends (and yes, that IS hard for us, to be sure!) while we are home caring…selflessly…for our child who will one day gain angel wings. We don’t get many phone calls from friends because they usually are afraid they will be interrupting us as we change a nappy or such, which is sadly often what happens when the phone does ring. People don’t invite us over because of all that it would entail with our special child. People often don’t just drop by because, well, they just don’t.
There we are: the battle to maintain a positive self-worth and keep depression at bay in the midst of struggling financially, feeling isolated, dealing with our own health and weight issues, all while working 24/7 to care for our child who we know will one day pass away. We want you, the one not on this journey, to try to understand, try to gain empathy and compassion, so that you can maybe see just why we struggle in these areas.
For remember, it just may be YOU, gentle reader, who is the one to hand us a lifeline.
6 thoughts on “Depression, self-worth and being a full time carer to your child with a life-limiting illness”
Omg so glad I’m not the only one going through everything here.
Well done to all the people that are carer for a child with life limiting illness it’s the hardest job ever and unless you have been a carer no one really understands that pressure of what it’s really like to care for someone so today I give special thoughts to all carers in the world and may you continue to have the strength to carry on and when you can take time for yourself
Reblogged this on Mamaboo's Mayhem.
My daughter also has congenital CMV and sounds much like your son. We are blessed to have her with us for 20 years and look forward to her being 21. Of course at every major age change comes it’s own set of complications. God Bless.
I feel like I have just read my life and my daughters! Although they have different diseases they are so similar! My daughter Riley has AADC, pulmonary issues (4 breathing treatments 3 times a day), LGS, tube feed, can’t hold up her head, sit up, speak, etc. Every day is struggle and a blessing.
I’m a single mom. I have no family, friends or any support system. Not that i havent tried. My daughter is almost 13. I have had one break from her back july 29-aug2 summer 2013. I feel like im in prison. I’m being completely honest. I hate this life.