The issue here is when the patient gets tired of the whole 'illness thing'.
It's understandable; constant pain and debility, with perhaps no prospect for better days ahead, will wear out anyone. It may not be something the caregiver can 'deal with', but it's important to know what's going on...and to do what one can in support.
It's also important to document, because it's not only the course of the illness that can cause a loss of morale; many medications (or combinations thereof) can do this as well. The patient's medical team needs to know.
The symptoms of a patient who's getting tired of it all include:
A changed attitude - the husband or wife who was cheerful and upbeat in the face of pain and the devastation of life turns dark and brooding, or simply shows an attitude of I-don't-care.
Loss of interest - a person who followed the news won't bother, and what hobbies have been pursued remain untouched for a prolonged period
Preoccupation with death rituals - meticulously planning one's own funeral is hardly a good sign.
Changed emotions - sudden irritability - or calm in a previously temperamental individual - can be a harbinger of fatigue, that the effort just isn't worth it any more.
Resistance to, or outright refusal of, medications or treatment - this is one of which I'm guilty; not having insurance, I'm not going to beggar my wife with tests and treatments that might not even help. I've written myself out of the future, and no longer think I'm worth trying to save.
Lack of self-care - refusing (or resisting) washing or changing clothes is pretty common. I've lately gown a Duck Dynasty-style beard, but it's not because I don't care; shaving (or being shaved) just plain hurts now.
Isolation - refusing to leave the house (if it's possible) or see visitors is a sign of disengagement with the world
Expressed lack of self-worth - the patient who says, "My life is a waste" is clearly in trouble.
What can you do? Again, the first priority is letting the medical team know. This is where keeping a journal can be vital.
Don't nag, plead, or cajole. You'll run into an almost reflex resistance, and may strengthen the behaviour.
Set boundaries. Don't accept careless personal hygiene when the patient is capable of taking care of him or herself. You have to live in their company; be firm, and don't accept slovenliness out of either pity or a desire to avoid confrontation.
Be positive. For whatever the patient can still do to contribute to the household, be generous with praise. Don't let it sound condescending, but recognize the effort and what energy it may have cost.
Finally, and very importantly, remember that this is not about you. Your patient may try to personalize the fatigue and attendant depression, but it's only because you are the nearest target.
But you didn't make him or her sick, and you're doing your best to help. Don't let anyone, even (and especially) the patient, take that away from you.
I have another blog, "Starting The Day With Grace". The focus is a grace quote from someone you might not expect (like, say Mick Jagger) and a short commentary. I hope you'll join me.
Marley update...he's probably going to be moved to a sanctuary, and Bay County will revise their 'dangerous dog' codes.
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I have never been a care giver, but this advice and situation seems like it is common. I love the advice at the end. It isn't about you. Just do your best. Sometimes I have to remember that with my three year old. There are a lot of things going on inside his head and often his attitude or reaction is because of other things bothering him.
ReplyDeleteAmanda, thank you for this...and you do share many of the caregiver's burdens by mothering a toddler! You're absolutely right that it's what's happening in HIS head that causes him to act out - not anything about you.
DeleteThank you so much for stopping by!
I'm not sure how you manage to maintain that reasonable, neutral-party-sounding voice when you write about these topics, but it certainly is helpful.
ReplyDeleteBlessins to you and your wife (and dogs) during this Advent season.
Michele, thank you so much! Your words really made my day.
DeleteAnd blessings back, to you and yours!
Andrew, these are great! Just remember to not 'refuse treatment or medications.' Your life has value and you can't write yourself out of the future. God has a purpose for your life :). And it's OK to complain to God--if you don't believe me, read Psalm 64!
ReplyDeleteAnita, thank you...it is a hard road, because the choice is to put Barbara into terrible debt by rolling the dice to see if something can help...or opting out.
DeleteOpting out is awfully hard, because it does involve a degree of self-abnegation, and it's distressing to think that the timeframe where something might have helped has slipped away for this reason.
I do complain to God sometimes! But mainly, I accept the job He's given me, to write that life is still good, and while I am here, that I want to live every moment.
Thanks so much for being here!
Good insight! But it isn't true of all dying people! My husband never, not one single time, admitted he was dying. If I tried to talk to him about it he would just state firmly, "I'm not going to die". Even when he would no longer eat, or take any medication, it was still "I'm not dying" Very frustrating for me because I wanted to make it all about me! I wanted to get everything said that I wanted to say because I knew we were running out of time. I have always wondered if he made his own peace in some small way before he took that final breath! He never talked about it. Smiled and held on. Right to the very end! Dying is much like grief, I guess. There isn't just one way to do it! Hugs, Andrew!!
ReplyDeletePaula, wow! Thank you so much for sharing this. You raise an excellent point about 'saying what needs to be said' before the end, and not turning away in denial. I have to confess that I haven't been able to face 'those' conversations yet.
DeleteI truly appreciate your presence here. Your comments provide so much! And thanks for the hugs! Hugs back!
Andrew,
ReplyDeletegreat post. I have to say that your attitude has become more hopeful the more pain you are in. Kind of like Shadrach, Meshach and Abednego. They came out of the furnace and their clothes were not singed. They did not even smell of smoke.
You are coming through this fire and singing louder praises of God than ever before.
Joy was appropriately prompted in your post Thursday!
Glad to be your friend.
-Tammy
Tammy, thank you for that wonderful comparison! You've placed me in some really great company.
DeleteI'm finding that God is closer and more accessible every day; not because He's made Himself thus; He's always been here. But MY eyes and heart are being opened.
I'm glad you're my friend too, Tammy.
Well, we haven't written your life out of the future, man! That's why we all keep coming back, cheering you on ... and encouraging you to do what you can.
ReplyDeleteSound advice about talking to the doctors about what's really happening. Please do ...
Linda, thank you so much. The online community is a HUGE part of what motivates me to keep showing up.
DeleteOne fortunate thing is that we have a really good family doctor, and Barb can visit him regularly...and they've developed a protocol to keep him updated. Aside from the financial aspect (I can't afford to be on her insurance from work) the trip into town is terribly painful. But the information at least does get to him
Thanks so much for being here!
Andrew, I found great comfort and insight into your blog post, and it was timely! My father-in-law has just been admitted to a memory care facility, and it is so difficult to watch him entering into some of these behaviors which make us believe he is giving up. It's just very difficult for all involved, and I'm thankful for the encouragment here. Visiting from Inspire Me Mondays:)
ReplyDeleteCrystal, I'm delighted and honoured that I could help you in this. It is a very hard road to walk...my father-in-law had a stroke during the summer that affected much of his memory.
DeleteI'll be praying for you.
This is helpful information and good advice!
ReplyDeleteI didn't know you didn't have insurance. I'm so sorry! Illness is expensive enough even with insurance. I'm sorry for the extra financial burden this places on you and Barbara.
You are certainly worth saving! But I don't know your exact diagnosis, prognosis, or treatment options doctors have given you. There certainly does come a time when treatments are no longer helpful or the right/best thing to do. But that's a decision between you, your wife, and your doctors.
Praying for you and Barbara today.
Rachel, thank you...not having insurance IS hard, and the tests/treatment are financially so far out of sight as a self-pay as to be laughable. It would be a Whipple procedure, removal of part of the pancreas and small intestine, which can only be done at a couple of hospitals in the US.
DeleteBut I may be past the point where it would be worthwhile. It's a dangerous operation, and I am now probably to frail. (Ugh! HATE that word!)
But it's OK, My doctor says that I'm surviving on a positive attitude, and there's also the fact that I'm rather too mean to die (he's a former cowboy). I'll take that, day to day.
Thank you so much for the prayers, Rachel. We do appreciate them.
I did not know what it meant to be in pain until i was in pain, chronic pain, with no end, but it won't kill me, but the thought of living another 30+ years in chronic pain in beyond my ability to endure and so i have learnt to stop thinking further than a day. I did not cause this to happen to me, it just did. Yes, my positivity goes up and down, along with the pain, but it is up to me to accept that it's not my fault. As a retired nurse i looked after people who were dying and in most cases they comes a point when the individual accepts that it is not their fault that they are dying, it just is what it is and they cannot change it. This moment of realization, if it comes soon enough, brings them more peace than anything or anyone else can. Until such a time all we can do as care giver is listen and not allow our negativity and despair affect the person in need of care.
ReplyDeleteBeverley, thank you so much for sharing this. I'm sorry for the hard road you face. And you're right, not looking past today is a big help; it's what I do. I figure God made the world round so that we could not see beyond the horizon.
DeleteYou're absolutely right that knowing it's not your fault brings peace. For a long time I second-guessed myself, especially on diet...but when I realized that I was trying to rewrite history by splitting hairs, I was able to let it go...and could enjoy life again.
Thanks so much for being here, and bringing your perspective to the conversation.
I remember hearing after my mother had a stroke that one of the side-effects was depression and suicidal thoughts. I don't know if she thought of killing herself, but she sure struggled with depression during that time. And it's easy to think as a caregiver or loved one that somehow "we" can fix that in them. It's something that we need to be aware of--like all that you've pointed out here, Andrew--so that we don't make the mistake of taking those things personally or trying to fix what isn't fixable. Great wealth of wisdom in this post, my friend! I'll be sharing!
ReplyDeleteBeth, you're so right. I've dealt with some aspects of depression brought on by the situation, and the worst thing sometimes is a pep talk. "You can't fix me right now, but you can hold my hand."
DeleteThank you so much for sharing this, my friend.
I really needed to read this today. I'm not a caregiver. And I'm not dying any more quickly than healthy people my age. But I feel like a lot of things you talk about are applicable to people with chronic diseases and mental health issues as well. I'm starting to think my depression might be chronic.
ReplyDeleteSo much this. I've been battling the desire to give up for months now. Doing slightly better. You are an inspiration.
Alchemist, your comment touched me deeply...I'm so glad I could give you some inspiration.
DeleteDepression is an awfully hard thing...I know it's a liche to say that, but it's such a weight to have to carry every day...and the rest of the world just doesn't get it.
They'll offer fix-it solutions and snap-out-of-it remedies, without any understanding of the fact that you CAN'T snap out of it, and that life may mean coping with it, and not a 'cure'.
My heart goes out to you, and you are in my prayers.