This blog post, I am proud to have a guest blogger, my husband and caregiver, Paul Glover. He has written a fine piece from the perspective of the caregiver. I could not get through life without him! So here it is, and enjoy! Thank you Paul! I love you! <3
Hello. I’m Paul, and I’m a caregiver. My wife, soulmate and proprietor of this fine blog, has had Fibromyalgia and Chronic Fatigue Syndrome for longer than I have known her and now also suffers from painful and debilitating neck deterioration. You’ve seen her posts about living with her chronic conditions, but today I’m going to write a little about living with someone who is living with one or more chronic conditions.
Being in that position is a challenge, one which some, sadly, find themselves unable to rise to. You didn’t plan for this, weren’t expecting it, or maybe weren’t expecting it to be so severe. You’ve had to watch, more or less helpless, as your loved one suffers. Your lives have been changed by it.
Meanwhile, your “patient” is endlessly frustrated by their condition, unable to do some things they once took for granted. They’re tired all the time, often to the point of exhaustion. They’re in pain all the time. And you can’t possibly understand that, not fully, because you haven’t experienced their plight first-hand.
Your loved one will, at times, be grumpy. Try to imagine how you feel when you have had a bad night’s sleep, or a mentally tiring day, or are feeling under the weather. Not such a ray of sunshine, are you? Now consider that your patient feels like that ALL THE TIME. They don’t get good rest, they hurt every minute of every day. You can’t possibly understand how awful that is for them so please, give them a break and don’t hold them to the same standards you would hold anyone else to, because their experience is not one which lends itself to being super-positive all the time. Please realize that sometimes your patient will be having a rough time of it.
However, as the patient, that doesn’t give you the right to ride roughshod over your caregiver and take out all your pain and frustration on them *all* the time. As the sufferer of chronic illness you do have the bad end of the deal but seriously, taking care of an unwell loved one is no walk in the park and unless you’re writing checks every 2 weeks, that caregiver is there most of all because they love you.
As a caregiver, be aware that your patient will sometimes need to vent, to sound off about how crappy they’re feeling. There is nothing wrong with that. Be there for them. Listen. Support them. Don’t expect them to be positive at all times because that’s just not realistic given what they’re going through. The one aspect of this that I still struggle with is my male instinct to “fix” things; I’m trying to learn that a good old rant is just a means to blow off frustration and doesn’t require a “fix”.
Again, though, nobody can absorb continual venting without eventually being worn down by it. If you’re the patient, please try to keep in mind that your caregiver needs a break from that sometimes. Try to find people you can talk to. Kelli is blessed to have some close friends both locally and online who are going through similar experiences and can understand and sound off to one another. It makes things so much easier when there are more people to vent to who understand.
As a caregiver you must be prepared to take on extra work, because a person in continual pain and exhaustion simply cannot take on the level of duties that anyone else can. It’s how things are, man up and deal with it. Kelli is disabled by her fibro, fatigue, irritable bowel, anxiety and neck conditions, unable to work and unable to take on too much around the home. I work a second job to help make ends meet, at least until the folks at Social Security stop scratching their butts by committee and start working her case properly. But I love my wife and I do these things to support her in her time of need. True love is worth that!
Do take time to understand the conditions you’re dealing with. It may not be possible to truly understand how it feels, but you can certainly understand what the issues involved are. I know that Kelli’s fibro fog means forgetfulness, and that IBS can mean a last second bathroom stop. I know her hands don’t work very well and that the neck issues can also cause sudden leg and foot spasms that will cause her to fall and which have to be massaged out. I always try to know where the asthma inhaler is in case she should wake up from a nap coughing and struggling to breathe.
Also you never know when you may need to be medical advocate for your loved one. Kelli is fortunate to have a good medical team now, but it has taken a lot of time and effort to get to that position. We make a point of having me go along on any first appointment with a new practitioner; it’s important for me, as a caregiver, to know what each doctor is like.
My final point I cannot stress enough: you are not just a caregiver, duty bound at all times, you are still an individual who probably had interests and hobbies before this happened. Take time to enjoy those things and be yourself. There does have to be balance of course; you may not be able to go off for an entire day or weekend, but do take some time for yourself now and then.
As the patient, you need to accept that this has to happen. I’m truly blessed and fortunate that Kelli is entirely supportive of my needs in that regard; even excited about my photography endeavors (more often than not, she will be the one to spot a photo opportunity and point it out so I can stop the car and turn around!) It would be very easy for a caregiver to fall into neglecting those things out of a sense of duty and become resentful, but that doesn’t do anyone any good at all. Fortunately, Kelli reminds me that I need to be me sometimes, when I can be prone to neglect that. For that, I truly thank her and love her all the more. It makes me a better caregiver.
Your loved one needs you to be the best caregiver you can be. Is something preventing that from happening? Please, for both your sakes, discuss it like grown-ups. Things will not always run smoothly, but the path doesn’t have to be rocky all the time. You can do this!