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?
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.)
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..
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.
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.
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.
You aren’t alone in your thoughts.
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
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.
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.
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.
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.
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?
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.
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'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.
So sorry for your losses. You sound like you are a very caring person and your family was blessed that you loved them so very much.
Take care.
Now that she's been gone for a while, I finally have more time to take care of myself and reflect on her last years. I no longer feel bad for having had those thoughts. Instead, I feel really satisfied at having made a horrible situation better. You are doing a world of good for your parents. Focus on creating good memories. Recruit helpers and allow yourself to take breaks and refresh yourself. There will be a lot of bad, but when it's all over, you *will* miss your parents, and you *will* cherish the better memories of this time.