Dealing with serious or terminal illness in a spouse is probably the most challenging thing you'll face. It tears at the emotions, it can undermine faith, and it can be physically draining.
And, for good measure, it can be a financial disaster.
Let's look at each of these in order -
Emotional exhaustion, sometimes called compassion fatigue, is almost impossible to avoid when you're watching the person you love the most in all the world fade painfully from this life.
With the best will in the world to meet the challenge of each day with fortitude, the demands pile up quickly - your obligation to be the support (sometimes the only support) for someone in extremis, the demands of having to work (sometimes in a distracted state), the requirement to be there for your kids if they are still living with you (and sometimes if they're not), and not lastly the need to be emotionally attentive to friends and family, to keep those vital connections up.
Just writing it is tiring.
Emotional exhaustion sets in when you simply start getting numb; the pathos of the situation fails to move you, and you become more a master of expediency - how to accomplish the required tasks - than a steady source of uplifting support. (And that engenders guilt, just to make it a bit worse.)
The only way to really fight this is to preserve parts of a life that is yours. Whether it's being able to take a few hours on a weekend to play tennis or golf, or it's limited to getting a latte at Starbucks on your way home from work...do it.
It's not selfish. This is the preservation of life - yours. Emotional exhaustion arises when your identity starts to become lost, subsumed in the ongoing tragedy that's become central to your life.
But you are not dying. Not yet, anyway, and you have to reinforce the feeling that life does, indeed, go on. It's not heartless; it's necessary. If you're religious, remember that you were created with just as much value as the person in your care...so you have to be within your own circle of care.
And don't do it alone; keep up those trusted friendships in the safety of which you can find help by simply being able to rage against the injustice of it all, without being judged or condescended to.
Faith can really take a beating, in this situation. You see an illness, pray for healing...and it doesn't happen. There are those who say that you didn't pray hard enough, or you didn't use the right words or 'form' for your prayers.
This is sheer nonsense. Everyone dies; Jesus, in His life on Earth, died more horribly than most...and His prayers for deliverance were refused.
In the 21st century, many branches of the church have taken a hard turn into the 'prosperity gospel', and 'signs and wonders'. God wants you to be rich; God wants you to be healthy; God wants to heal your infirmities.
Yes, He does, but He also wants you to have the free will to choose Him, not as a genie who grants wishes, but as a source for hope that's eternal, and not temporal. Are there healing miracles? Sure, I think there are; but I believe they follow the pattern of those described in the Gospels, in which the healing was performed as part of a larger function. An example, if you will, and not an end in itself.
As someone who'd definitely like a healing miracle (and as I write this I am on the backside of the worst day I have had), I can accept that God may have other plans; and that healing as athe result of 'penny-in-the-slot' petitioning would actually work counter to His requirements, in creating free will.
Of course I'm going to worship a God who answers this prayer, but the point is to believe when He seems to be absent.
I think the best counter to this kind of disappointment-undermining-faith is to consider the history of Christianity. Horrible things happened in Jesus' time, to perfectly nice people. Eleven of twelve Apostles met nasty ends. And we revere martyrs.
It isn't about God blessing us with book contracts (so important to a writer!), or placing us in an advantageous position for promotion. It's about trusting God to be there, giving us the comfort we need to survive when we're looking into a fearsome abyss.
To maintain our faith, asking for help can be vital; no religion, least of all Christianity, says we're supposed to go it alone. Almost every church has support groups, and most have specific support groups for caregivers. Get involved; it's a place where you can be free to cry, and to doubt...and to have your tears dried, and your doubts gently healed.
And, when you participate...you're helping others, as well.
Physically, caring for someone can be trying; ask my wife! Sometimes she has to be my 'other leg', when walking is difficult; and she's had to drag me inside, when I collapsed in the yard from a spasm of pain.
Add to that the time-consuming stuff of having to bathe someone, and maybe feed him...and keep a tally of medication...along with life's normal demands.
The best way to face this is...wait for it...self care. Thi is the time to watch your nutrition, and exercise as you are able, and catch sleep when you can (if sleep deprivation is a problem.
Here, you can ask for help by having an accountability partner...someone who knows your situation, and who will keep tabs on you...and will exercise with you.
And finally, finances. Dying isn't cheap. I have no insurance, and part of the reason I don't take pain meds is that I can't afford them, and especially can't afford the blood tests every three months that are mandated by recent legislation (the tests were over $600, last time I checked).
You may need modifications to your house, to allow wheelchair access...or you may need a hospital bed.
It's very hard to ask for help with money; in this culture we are taught to be self sufficient, and to 'neither a borrower nor a lender be'.
But there are times when you can't go it alone. We have received help; we have had to ask for it, when multiple disasters hit at once.
And I am so grateful that it was offered, and given. Some we have been able to pay back; some of it...probably never.
There is a large serving of humble pie that goes along with dying.
And I guess that is part of the lesson...because when we were in that position, I asked myself...if I were able to help a friend or family member, would I hesitate? How would I feel if someone forebore to ask me, when I could have given that aid, and instead suffered in silence?
I'm no saint, no philanthropist...but I'd like to think that at the times I could help out, I did.
It isn't a matter of paying it forward, or what goes around comes around...it's just that life can beat you into the ground, and sometimes we can't get up alone.
As you might imagine, this was both awkward and difficult to write...especially the last bit. What do you think? What can you add?
And if I got some of this wrong...where's the error?