The guilt of having this thought on a regular basis is really tearing me apart. Caregiving has been really hard - I'm an only child, single, no kids, with a time-consuming job that I hate but which pays well enough that I can spend money on their care (home health aide, I take over FT when he has his days off) and employers who threatened to fire me in violation of state law when I said I may need some leave time.
I understand what is causing these thoughts, it is the ongoing sad situation I want to end, not my parents lives, but the thought still comes to me often and it's making me feel absolutely terrible. Everytime I try to read about these thoughts in an article, it says that you may "sometimes" have these thoughts. I have them daily and then I feel terrible. Are others in this boat?
We are human beings. You are experiencing GRIEF, not guilt, or should be. My brother was diagnosed with probable early Lewy's Dementia. He was well enough to know EXACTLY what was ahead for him, and he and I BOTH were able to talk together about wishing he did not have to take that long slow slide with loss after loss after loss, from dignity, to control, to loss finally of mind and all that makes us who we are.
And the sad truth is that you long for it to be over for YOU as well. It takes over your life until your life is nothing but exhaustion and bearing witness to the indignities visited on those you love, with NO HOPE, and with no end assured.
What you feel is human and normal. We are not SAINTS. If we were someone would have to shoot us full of arrows and send us to heaven where we could spend ETERNITY trying to make everything all right for everyone on earth.
Please understand your human limitations. Mine are so rigid that I would never have attempted what you are attempting to do, so if hell awaits us then I will be there a good deal sooner than you will.
My heart goes out to you completely. PLEASE be gentle with yourself. Accept your humanity. You are doing the best you can.
Let me make a comparison: you say you don't have children. I have 2. I love them dearly, and am so very glad we had them. But, when they were infants, and I was taking care of them plus working a full-time, stressful job, plus commuting, there were moments that I wished I hadn't had them. Vehemently. When you're working on only a few hours of sleep, and you are dealing with a fussy, crying baby - well, it's enough to make anyone tell themselves "my life would be so much easier if I had never had this baby!" It didn't make me a bad mom; I didn't neglect them, I sacrificed myself for the good of them. It wasn't my thoughts that made me bad - I only would have been bad had I followed through with actions.
And caregiving for chronically ill adults is worse in this way: with babies, there is a light at the end of the proverbial tunnel. Every day means one day closer to independence; unless you are raising a child that has some sort of health issues of their own, you know that the caregiving responsibilities will shift, and your kids will become old enough to do for themselves. You will never get to that point with a chronically ill parent. And, unfortunately, when you're dealing with elderly parents, the end of caregiving isn't one filled with glow of a job well done teaching your children independence. The end of caregiving is full of heartbreak and guilt, whether the end comes due to death or placement in a facility.
You are entitled to your thoughts. They don't make you a bad person, an unloving daughter. You are doing a thankless, stressful job that seems like it will never end; a job that always leads to thoughts of "I didn't do that well enough; I should have done that differently; why didn't I do such-and-such sooner", and so on. You are doing the best you can in what is very nearly an impossible situation; please don't beat yourself up over thoughts.
My mother also hates her own life, and the dementia that is wasting away her brain.
If you had malice and evil in your heart against them, that would be one thing. This is quite another. You hate the EFFECTS that aging and disease is having on all of your lives.
I used to work in a Memory Care ALF as a front desk receptionist last year. A Catholic deacon would come in every Sunday to pass out communion to those residents who were interested. He & I got talking one day about our mother's, both 92 at the time, both with dementia, both miserable & complainers, living in Memory Care themselves. He told me how he prayed daily for his mother to die. I was surprised to hear him say that at first. He went on to explain that he wanted his mother to finally be at peace, to be out of pain, to stop complaining, and to be with God where life would be good and she would be whole again. He had a broad smile on his face when he spoke those words. Right then & there I knew there was nothing wrong with ME praying for MY mother to also die and finally be at peace herself, after 94 years of chronic complaining & misery.
There you have it.
No need to feel 'terrible' about wishing peace & contentment for your aged parents. There is nothing good at all about advanced old age, for anyone, let's face it.
Many took care of him in their own manner. My girlfriend cooked his meals, according to his needs at the time - I did the paperwork (SS is often a nightmares stating "we've determined he is no longer disabled"!!!) My brother did some creative designs on his walls and windows of his cruddy lower East Side apt (now expensive, lol) to make the room look nicer.
I remember when he was still at his apt, crawling into bed with him for a nap and he said "aren't you afraid" and I said not as long as we use common sense (me on a top blanket - no coughing so on). (he needed a hug). (I worked at a scholarship program AIDS Education and Research and I had to do the mayor's month statistics so on, so knew a bit more about it than was published in the media - airborne and easily caught). It carried a terrible stigma and I recall many in my scholarship program (we'd have to give a research discussion) really saying it was punishment blah blah and blah. I said be careful, it will hit all populations and did. (women when the husbands visited "ladies of the night") drug users and other groups. Even straight men who have multiple partners with women and refuse to use protection. (prevalent in Africa today.
He had worked at an expensive restaurant where they made up to $2k a week (cash) so I said "boys" pony up and put an envelope out for the collection. I was stunned that some of his very wealthy friends did squat - just disappeared. His mother, remarried to another very wealthy man did nothing. His poor grandma and pa did visit and I took them up to the hospital but the husband had early dementia and there were problems.
When he was in the hospital (which he feared going to and rightfully so as it was thought to be airborne at the time) the real nightmare began. His food tray cart was shoved in the farthest corner and he was often cold as no one would cover him up. I worked 70 hours a week (weeks, weekends and part nights) and college the other nights, but I would go up once a day to make sure things were ok.
I was EXHAUSTED and started "resenting" it all. Not him just the overwhelm of it all. I was glad to be of service as those who had no one had no one to check on the care.
One evening I stepped outside his room and broke down in tears - it all came pouring out. I went to the hospital church and asked for even more strength. Then I composed myself and went back in.
I then enlisted the help of some of his friends to go up and we made a chart. Many it turned out did not know what to say or do. My twin brother as well. I said he can no longer see, describe what you saw in the park today, or the flowers you smelled. Ask him if he wants a book read - those sort of things. Or just sit in silence and to know someone cares about you when so many die alone. A woman won the lottery and started God's love we delivery and wonderful people brought food to him and fed him each day (with enough for a day's meals).
Call me crazy for the rest. lol And then one night when my bother was there and it was dark in the room we saw a thin whitish/blue outline on his body. I asked if my brother saw it as well. We knew his soul was preparing to leave. The next day on the subway train I saw him in my mind's eye and he was normal, was somewhere else and ok. My friend who had gone up to take the next "shift" of being there called later + said he has passed later in the night (after my brother + I had left)
I was so happy that his horrible suffering had ended. And I have to admit I was relieved as well.
And PS - when we put my family dog down in 2011, I saw his spirit as a blue-white outline rising and disintegrating before it got to the ceiling. I've also had times when I knew someone I care about had just died and it was true. There's so much we humans just don't understand. I lost a few friends to AIDS too and I remember the terror of those times.
Peace to you, you lovely person you.
You aren’t alone in your thoughts.
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