I have been trying to get this post together for awhile…it is hard for loved ones to speak out about what they deal with. I had Brian make a list of what he thinks about or what he sees as the hardships of taking care of someone with a chronic disease. I pray more loved ones add to this list. It is important for good communication in any relationship even more so with someone who is sick. I say this because sometimes we have more needs than the average person. Emotions are definitely more heightened and as i said before we have special needs as do those of you who take care of us. It takes a special someone to have the patience, compassion, love and dedication to take care of us Spoonies. I thank all of you from the bottom of my heart. It is NOT an easy task. I talk about this very topic on my page titled “all about me.” Many times people say than take care of us,yet fall short for whatever reason or excuse they might have. I think using our health as a reason to bolt is just a scapegoat. Although it was a hard thing for me to go through, thankfully i am the kind of woman that bounces back from pretty much anything. I guess when your parents turn their backs, you learn to move on fairly fast when others do it too. It still sucks though and even more so when i read the statistics on divorce and or people leaving loved ones who are chronically or terminally sick. It outrages me. It completely disgusts me. But i believe the more we talk about it and share our stories, the more people will mean what they say when they say it and stay. So i am very grateful to those of who not only talk the talk but walk the walk! God Bless you
*****I believe that these are not in any order*****
1. The struggle of watching your loved ones in pain and not being able to do anything but be there for them
2. The time you spend doing nothing just to give comfort as they sleep beside you or on your lap on the couch
3. Not knowing when the pain is going to consume the day and ruin all the plans made together to do something with each other.
4. Massaging your partners sore spots for as long as you can trying to help them through the pain. (I’ve fallen asleep so many times at night while doing this)
5. Knowing that when they snap at you its really the pain they are angry with and not just because you asked how they are feeling
6. When you lay down with your loved one and your hand automatically finds that one spot that hurts and out of habit start to massage it.
Even in his sleep he holds my hand 😉
I love this quote:
“Watching someone you love… die? There are no words for how broken that makes a person. It’s like waking up from a bad dream only to find out that it’s your reality, it’s like watching sunlight fade from the sky, like watching death suck the one you love dry, and being powerless to stop it. You may as well try to stop the waves from rolling in, or the sun from rising.In the end, the waves will roll, the sun will set, and death will come. The only thing you have a choice in? How you deal with it…when it does.”
― Rachel Van Dyken, Toxic
This is a guide that i will continue to add things too. I have found that these things help in my own personal life and some of these ideas i have also gotten online and or in books i have read. I Hope this helps, if you can add to this list please do so!
1.Learn as much as you can about your loved ones illness/disease. The more you know the more i believe you can help. Look on internet sites, read books, talk to others etc
2.Make sure you know how much you can do either emotionally or physically. If you over do it, you may take that out on your loved one, so please speak up when you need a break or you just need help with something.
3.Understand that you will have to deal with not only your loved ones feelings but YOUR OWN. You may be angry, tired, worries, you may even feel guilty about your sick loved one. These are all ok, but you CAN’T hold it in, you must talk to someone. Holding in your feelings will only do you harm.
4.Make sure you still have YOUR time. We can manage on our own sometimes. You deserve a break take one. Talk openly and honestly to your sick loved one about this, they will understand, and even if they dont, you still need to have your own time.
5.Take care of your own needs, eat, sleep etc
This category is for the caregiver. We all know that chronic illness does not just affect the sick one. Read our experiences and add yours.