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?
I'm approaching 60 and will soon have four grandchildren. Fortunately for me I love my work, but it's only part-time. I never thought my mother would sell the family home and move near us, and we have never got on well (see threads about narcissists and scapegoat children for reasons), but she decided to come four years ago. Mum has depended almost exclusively on my husband since then, with bad results for our marriage.
I just want her not to be here and not my responsibility. I *do* feel guilty about this, but have to be honest. She isn't enjoying her life and neither is anyone else, and it is likely to get worse and worse for her (and us) as she gives up on most things and her health declines. I don't want that for her, or for us. My dad died suddenly at 67 of a heart attack. Far too young, but in some ways almost preferable to what my mother's life has become.
So no, you are not the only one, and I am grateful for the honesty and support of people here.
In my situation my mother had planned Everything for her last days. She was very thoughtful. I do miss her now. Thank you Mom
I am a caregiver for my husband of 24 years. He has been sick and I have been Joan of Arc for about half that time. My halo is tarnished.
It all seems so pointless...........and so much work! My dear husband just eats and sleeps.
Funny, before I saw your title I was just thinking that I should have gotten help years earlier. It might have preserved more of our relationship. I got to the point where if I saw or heard him, it meant that I had to get up and do something. I let that go on for years building resentment. Idiot!
Now I do have help and it is really too late. We can hardly communicate about necessities, forget about complex things.
Oh well, do I feel guilty for having these thoughts? YES! but I know that when it is over, I will remember all the good things. And I look forward to that. It is hard for me to remember all the good things when I am utterly inundated with pills, prescriptions, labs, doctor visits, grocery shopping, cooking, diapers, wet bedclothes, wet clothing, laundry, laundry, laundry. Who has time or the inclination to reminisce? The exigencies of caregiving.
But that time will come.
Feel your feelings and remember: feeling are not facts.
The fact is, we are doing a great even if imperfect job and an important job.
Well, it was my mom's birthday yesterday. She turned 89. One of he cousins called to wish her a happy birthday. She told me she wished she would live more than 100 years... Well I heard myself answering : I hope not. This would kill me and what life would she have?
It is a strange situation, but I do have a stepmother who lives in another state. They reconnected after my mother passed. They both kept their homes and traveled back and forth for 10 years, but she has decided it is too much for her so she stays primarily at her home and visits occasionally. It does give me an occasional break, but I feel like my father will never consider assisted living as long as she is still able to visit him in his home.
I am glad I found this forum and know that I am not alone in the way I am feeling.
I too am an only child. My mother was abusive and it’s a long story but I did step in to manage her care. I refuse to provide direct hands on care.
I am going to make the suggestion that you find another option for your parents care and stop paying for aides and taking over the gaps in time yourself. You have a demanding stressful job (that you hate?) and then go and also provide the physical care for both of your parents? You will end up ruining your own health and finances.
You haven’t said what their financial situation is, but I would begin by exploring the local office on aging. Consult with an elder care attorney. Get some advice from an elder care social worker. Join a caregiver support group. Contact your local hospice agency for an evaluation to see what support they might provide. “Only children” know how to do everything on their own - we are amazing! But this is the time to circle your wagons and call in support. Then maybe you can find a job that you like and these thoughts will ease a bit.
This year the unit has reopened and I could visit. I dreaded it, but I masked up, signed the forms, had my temp taken and went in to drop off supplies and visit her in her room for the first time in a year. She raised her head curious as to someone in her room, eventually got out of bed and walked past me down the hall to breakfast.
When our wonderful mother died, we had to tell him 3 times, and I still think he didn't believe us, due to Parkinson's paranoia, until he realize she wasn't coming to visit him at the nursing home (which became necessary at the end.) I truly believe he made a conscious decision to die and then did so, especially since doctors had been saying for several years they were surprised he was still alive.
When he passed on, I actually gave thanks to the Lord, because he was out of pain. Don't feel guility.
However I also think that because this is happening every day, you may be depressed and if you haven't already, you might want to talk to someone who could help.
From the sounds of it you are between a rock and a hard place with an unreasonable employer and a difficult domestic situation. Having no siblings to share the frustations (even though they usually cause some too!) means you feel isolated.
None of this is your fault and your circumstances would make anyone depressed, so don't feel bad, just be kind to yourself and consider your options.
Good luck with whatever you decide. x
You aren’t alone in your thoughts.
I think these thoughts too about mine and I realized one day that it isn't really that they die, it's that I wish they could stop suffering, stop the cloying fear they have, and be peaceful, conscious and mentally engaged until their last breaths.
I've heard legends about first nations peoples who throw a big party, say goodbye and then let the old person wander off into the wilderness to, presumably, make peace with the Great Spirit or whatever and then...die of whatever ends up taking them. Although it would be super hard on my daughter, who is my only living child now, I think that would suit me FAR better than the decade of decline I'm watching my parents all go through now.
I agree with this. I once told my doctor I am not really afraid of dying, but I am terrified of modern medicine.
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.
Get into therapy.
Get the support your need - to understand your feelings and thoughts.
And, yes, when they are gone, many of the stressors will be gone.
You likely will feel guilty or some negative self-reprimanding.
I believe very very few people have NO regrets or guilt when a loved one dies with the "what ifs . . . why didn't I . . . I wish I had . . .
You need to make some changes to deal with your stressors, anxiety to support you, causing you to think as you are. As you understand yourself better and feel more ease, feel better about yourself and handle your current situation more effectively, I would imagine that these thoughts will shift too. The thoughts are a sign - a huge sign - that you need support and need to make some changes.
I used to think "I wonder how I'll feel when my mother dies" - I had no idea how grief stricken I would feel. I had a difficult relationship with my needy mother. Projecting is not the same - nothing like - when a parent departs. How we feel about a parent's death depends on the quality of relationship we've had, have now, with them, and the relationship we have with our self. I have found that FORGIVENESS, for yourself and others, is huge. Let all the crap go. All we have is this moment. The present.
Since you are the only child añd income I'm sure you have SS and Medicare insurance for both so able to afford the home care. In order for you to continue working then you need to take care of yourself. Your caretaker gets a day off when do you?. You cannot keep this 7 days 365 days year without something breaking. Either get 7 day week help or get them in NH or assisted living. Caretaker is hard especially for family..
Takke CARE OF YOURSELF OR U WONT BE ABLE TO CARE FOR THEM..
If my mother had been very ill, with or without dementia, I wouldn't want her to linger on and suffer. Those thoughts likely would have been common for me as well. She had "minor" issues (high BP with meds, hearing loss, Mac Deg being treated), but the main issue was dementia. Knowing I could not provide the physical care needed due to my own age and limitations, facility was used. Two brothers would not have been able to provide the care needed (one not local AND is abusive, the other 10 years younger, still working, so not home and rather scatterbrained, IMO.) She still had some "enjoyment" of life, so wishing her away didn't really come into play for me, not until after the second stroke. That's what really did her in, but she didn't linger.
Personally I wouldn't want to linger either. I am trying to ensure there will be sufficient funds and legal paperwork in place, but have already told both my kids there are NOT to take me in or move in with me to care for me. If I need help, I plan to hire what I can. If none available or dementia takes hold, I've indicated I would like to move in where my mother was (IL/AL/MC, non-profit - they took very good care of my mother.)
If your parents are just elderly and need minimal help, it may just be your need to have a little time for yourself! All work and no play isn't healthy for anyone, never mind Jack. If they need more assistance than you can provide, would they be eligible for Medicaid? In general, Medicaid for LTC means NH, where one not only has to meet the ridiculously low income limit, but also qualify for NH care. However, most states have Medicaid programs to assist with in home care. If they can pass this new bill, it might be even better. Until it can get passed, you will need to inquire - often called Medicaid Waivers, I think? It isn't full time care, but ANY paid care you can get in will help you!
You may need to consult with EC atty. Many offer a brief free consult - try several and see what they say (have all questions drafted and know all the financial details before the consult.)
This bothered me to read. A quick lookup indicates there are some restrictions, but FMLA is a Federal program.
"Covered individuals: Employees are eligible to take FMLA leave if they have worked for their employer for at least 12 months, and have worked for at least 1,250 hours over the 12 months immediately prior to the leave, if there are at least 50 employees working within 75 miles of the employee's worksite."
So, if you've been there at least a year and have worked 24+ hours/week, AND there are at least 50 employees, they can't fire you, esp not for asking. Several others have commented in various threads about taking it more in an "as needed" way, not a full 12 weeks.
Further searching:
"...to care for immediate family members (i.e., spouse, child, or parent) with serious health conditions."
You indicate parents, plural, so TWO people in immediate family...
Then there's that 50+ employee situation:
"Private employers with fewer than 50 employees are not covered by the FMLA, but may be covered by state family and medical leave laws."
There was no indication of which states have this provision, but your post indicates your state does have some law(s) in place.
Quite honestly I probably could have sued my company. A combination of the disability provider lying* to the "company" doctor AND him not taking the time to tell me what they said and ask for my side of it, just "ordering" me back to work, I was NOT given FMLA. The "company" nurse said they were outsourced, so not company employees and can't fire me, but I told her I'm not stupid - if he reports this, they could fire me without me even knowing WHY. I did find it in the disability company notes, but it was of no help at the time.
(*given subsequent dealings with them and hearing about what others dealt with, it is quite possible that this person just didn't read or analyze correctly, but in essence it was the same as lying. In some ways it was worse - incompetence! Later, when I had serious relapse that almost killed me, I was still in the hospital, on TPN feed and industrial strength antibiotics when I received approval letter for disability, but a ridiculous return to work date! They don't talk to your doc. They request office notes, look at the last entry and go with that! Jerks. All to save a freaking nickel, but in the end it cost them much more, as I was out from May to February. I used to sing the praises of the other parts of this company, having dental ins and an annuity with them. Once done with all this, ADIOS!)
Thanks for all this -- unfortunately my business is too small for FMLA. We're well under 50. But my state requires paid family leave even for small businesses, I was first entitled to it in 2019 when dealing with a health crisis for my father, and I was point-blank told to take all my vacation time and if I exercised my leave rights I would "win the battle but would lose the war."
The kicker? This business is a law firm. I'm a lawyer - in an area that is unfortunately totally unuseful in dealing with eldercare/elder law/employment issues, so I have friends who have helped me to get all the eldercare stuff in order.
Spoke to two employment lawyer friends when this blatant illegality was threatened and they said that if I did take leave and was later toss overboard, then they would threaten all sorts of claims and force a settlement agreement.
So I considered it, started to poke around about leaving and going somewhere else. Then COVID happened and it decimated the industry I work in which meant that getting another job that paid enough to help me fund some of my parents expenses was not going to happen (mostly a health care manager I pay because they have so many issues that flare up and need lots of calls to doctors/respiratory rehab clinics/labs to make appointments to come to their house and take tests) and the place I work was also not flush with money so any settlement would have meant they just dragged feet on paying.
So...yeah, law says one thing and life says another. (Which is basically all I have ever learned is true in all my years of law practice).
I, along with other respondents to your post, have had the same thoughts more than once during my caregiving years. Of course, down deep what we want is for the situation to come to end however that would occur.
Lealonnie relates a story of a pastor praying for his mother to die. If the clergy can pray for the death of their LO, why should we feel badly about wanting our own to find peace, comfort and happiness during and after the dying process.
I stopped wishing for my wife's death once I placed her in MC. I was free, was starting to get my life back and I wasn't so desperate. That's not to say I didn't visit (almost every day) or love her, it's just that the situation had changed and I could manage it. I did pray, however, that the Lord would take her during her last days in a coma. In the end, oddly, I felt relieved knowing that, somehow, we both were at peace.
I hope you, too, will find peace in knowing that you are doing your best.
Many hugs for you!