The Caregivers' Guilt Dumpster - Open for business

Caregiving is a tough job but I have finally figured out that my husband is not who he was on some days. It is a daily (even hourly) change with my husband. I find that taking him out shopping or out to lunch drastically changes his mood. If he gets tired, he will either sit on a bench or go back to the car and wait for me. Actually, it’s good for both of us to get out and about. Sometimes I just bite my tongue and say yes even if it is not the fact. You have to choose your battles and it is better to make him feel that he knows the facts (which he does not) than argue about what are the facts. It certainly is a whirlwind life but I know I will always be there for him and keep saying “it’s not his fault”

@leeleip
I have been caring for my almost 94 year old father in my home, for almost five years now. Believe me, I am the Guilt Queen! I will stay awake at night fretting because he complains to everyone who will listen about being bored with his life, the food given him, etc etc. I have tried sooooo many activities, outings, foods (as long as they don’t cause bathroom issues—I’m not a masochist), etc. I think more than anything, he is discouraged with his lot in life—going from an authoritative and fiercely independent, strong man, to an ailing man who is very dependent and has lost many loved ones in the last five years. Although I try to keep this in mind, the complaining and seeming rejection of my efforts, while I sacrifice so much of my freedom and life and relationships, is very hard. And the guilt—did I have an impatient expression on my face when he was making us late for his doctor appointment, did I answer too sharply when I repeated something for him the umpteenth time, etc (not talking abusive or disrespectful stuff, of course, in any way—but definitely not always grace-filled perfection as I would want).
I think part of all this, for us who are caring for parents (and I’m sure similarly for those caring for spouses), revolves around expectations. This is our MOM, our DAD—we are used to seeing them (and they are used to being seen) in a different way. It gets all turned around when we are caregivers who do everything from coordinate complex medical issues with many physicians, to cleaning up myriad bathroom disasters. It’s sooo hard on everyone. I read a response on Aging.com that rather than guilt (which is for bad things done maliciously), the things we are describing are better labeled grief—our humanness in trying to adjust, cope with, and meet the evolving needs of our loved ones.

Thank you, babbsjoy. To paraphrase a line from King Lear, ""How sharper than a serpent's tooth it is / To have a thankless child!"--make that, "to have a thankless parent." Your response is so patient and understanding of your Dad, despite his churlishness. We describe someone as "saintly" and people wince, because who believes in saints anyway, these days; but to bear what you're bearing, with so much grace and understanding--that is saintly in my book.

My wife of 53 years has dementia, diagnosed 3 years ago. Mostly I can keep my voice gentle and get her to do what she needs to do. But when she doesn't seem able to do something then I sometimes feel my voice rising and getting more urgent. Then afterwards I feel guilty for putting her under pressure like that. Fortunately she doesn't remember these episodes. But I do.

@babbsjoy I cried reading your response. It’s so on point. I don’t ever respond to my Mom with intended malicious words, never. It’s just sometimes I’m tired, or stressed, or plain frustrated and it slips out of my mouth sideways. Then, wham!! Guilt. How could I be so insensitive, so quick to respond and not recognize she’s probably tired and frustrated too.
Yet, it continues. This day in day out continuous pattern of swallowing my hurt, disappointment and never ending longing to have my Mom, my REAL mom back. It is what it is and I strive to accept this is who she is now. Thank you for your reply. It helped me tonight

Ok .. here goes .. I have nothing like the problems that so many of you on the forum are dealing with which makes me feel grateful, and also feel like a whiner. But today I lost it with my husband. He’s 84 with multiple health issues and not as mentally “with it” but I don’t think he is experiencing MCI. But he still thinks he can fix things that are beyond repair, and is trying to keep a business afloat with our dysfunctional son. I’ve been trying to clear up the piles of paper that are filling the house by trying to organize and file them .. which I have been urging him to do for ages. To say nothing of a broken food processor on our dining table, and removing the toilet “riser” that we no longer need since our 94-year-old sister-in-law who periodically stayed with us has recently passed. But there are always reasons for why he can’t .. and I suspect won’t do these things. He’d rather muddle around, waiting for the stars to align so that he can call the PT person to work on his physical limitations, for when he has finished the book he is reading, instead of tackling things that might actually enable him to function better.
Sorry to vent when I know my life is many more times better than a lot of people, for whom I have the utmost admiration, and I only wish I would have 1% of their patience and understanding.
Peace to all!

@lcl44
I feel your pain - my husband has always been a procrastinator (to my frustration), but he is talented and would eventually get the job done sooner or later. Now, in his mid-80's, with moderate dementia, he realizes he can't do it all. His last attempt was replacing a valve in the kitchen sink - after a few fruitless days at this, with parts all over and no kitchen water, he finally agreed to call a plumber and - presto - we have a new modern kitchen faucet (plus a big bill, but you can't take it with you).
My husband was never a reader so he sits on the couch with the t.v. going - he used to be a tennis enthusiast but you can only watch so many of those reruns until it gets boring. His other time-filler is looking at his pictures on his cell phone - he has a lot of them, and they help him recall people and events.

@jillsy Wow, we have quite a bit in common! My husband’s an engineer who still has an amazing ability to think through and solve “fix-it” problems but is getting more forgetful of things and slower at solving puzzles, and of course if physically not able to do the things that he once did, and that frustrates the heck out of him. Re: procrastination we have this saying: “Just because I have not yet done that thing I said I would there’s no need to remind me every six months.”
We have a Tennis Channel subscription which after obligatory evening news, Jeopardy and Wheel of Fortune rounds our our evening TV watching. Live tennis going on somewhere in the world all the time.
Hang in there!

@lcl44: It's okay to post in this group, even if it seems what you're dealing with is not as dire and difficult as what others are going through. For me, it IS a chance to vent, give outward expression of long pent-up repression of inward thoughts & feelings which are shameful to admit to. This a safe spot to do this--much better than "venting" on the person you're caring for. And then, I don't think it's so good either to vent with friends or family members looking in from the outside, who may have decades of mixed feelings about their relationship with me. Sometimes their interest can feel like schadenfreud. To protect myself, I need to maintain my reputation for stability, even-handedness, generosity, etc. So this is a safe space to let go of the less admirable stuff.

@workwoman
Thank you so much for your kind words. I agree with you about venting to family members and friends. In many ways I feel it would be a betrayal, and I don’t want them to start looking at him differently because of something I have said. I’ve found these forums useful for discussion of medical concerns I had and joined this one for advice/reassurance on cognitive changes I was beginning to notice and how to get a handle on them.
Thank you again.