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It is very hard for one person to care for another while trying to juggle home, job, family, etc. You are doing this for two people. No indication of what care they need, but if it's intensive, it will take a toll on your sanity!

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.)
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BrokenKB Apr 2021
Thanks helpful!!!!
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My my boat is a little different. I have siblings that don't do jack. I've had to leave work. I'm also single and I'm currently living on unemployment. I am 24/7 with no respite care and don't even get to go to a crappy job. And I often have that thought. Mom has modern Alzheimer's and death by Alzheimer's is awful. I keep praying something this will happen. And I pray for relief for myself which often times seems like her transitioning to whatever is next for our souls would be the best thing for both of us. I love her to the Moon and back and have literally given up everything to ensure she's cared for. I don't feel guilty about it though once in awhile I do but it's a normal response I think to overwhelming situations. I am now on an anxiety medication that's helped with depression and anxiety as long as I don't forget to take it. If you can maybe find a support group where you can vent to other people on a regular basis. The few friends I have left are my vents.
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kels31 Apr 2021
Thank you for this.
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If it is true then you shouldn't feel bad about simply having pragmatic thoughts. If we are watching our loved ones suffer it is kinder to think of them passing on and unpleasant life not being dragged out - it is certainly not something that thinking about should make you feel bad over. You aren't going to act on it, its just thoughts.
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I think this all the time.
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My guess is you are not alone. I'm sure there are many in that boat with you. My parents are gone and so is my husband while I didn't want them to die I also didn't want to watch them suffer. They had askéd nott to be put in NH. It came out that they passed in hospital or at home.
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..
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You certainly are not alone.
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.
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I can only relay my own story of the many conflicts caregivers confront. I had a young friend age 23 when I lived in NYC that had AIDS when it was first manifested and not much was known. The symptoms at the end are so horrific I begged our creator to end his suffering and I felt no guilt for that at all. Not much was known about it nor were their life-enhancing treatments and the Rx was almost as bad as the symptoms.

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.
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SeniorStruggles Apr 2021
This is an incredibly beautiful, poignant story. It says so much laudable about you as a person. It made my day to read it. Thank you.

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.
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My opinion is just my own: I think it is completely horrible to let people suffer endlessly, propping up their lives with drugs and interventions, hospital stays and on and on and on. It's awful to make them suffer when they want to die anyway, and keep begging for death.

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.
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enderby Apr 2021
When she was thinking clearly my mother always said the doctors were doing no favors for the seniors by keeping them alive too long. There comes a point where life is too miserable to be worth living.
I agree with this. I once told my doctor I am not really afraid of dying, but I am terrified of modern medicine.
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I think there is always going to be a bag of emotions in caregiving.

You aren’t alone in your thoughts.
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I do, but about my spouse. I feel he’d be better off and so would I. I feel extremely guilty, but I am blessed to have great friends that know my true heart that I can talk to. You may want to find a support group near you. Make sure you have some “me” time. A little each day and at least one day an hour or so. Just going walking helps me sometimes. The guilt shows you truly do love them so try to look for positive aspects. Trust me. This takes time. Don’t give up on yourself.
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Yes I know the feeling well I feel that it’s a strain on us that’s hard especially if you are on your own like myself it is a shame and they don’t want to live like that but sometimes I feel it would be better if my mum wasn’t here I have a full time stressful job and all I get from her is she doesn’t want to live any longer and she is constantly depressed which then pulls me down and sometimes I feel like I have had enough so don’t feel guilty for your feelings as I’m sure there are plenty of people in the same situation but don’t admit it good luck x
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Very common feeling - if everyone is being honest. You are not terrible, or selfish. If you were, you wouldn't be doing what you are doing. No one knows what this kind of life is like unless you have done it. Don't ever feel guilty or hate yourself. 😊
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You are not alone here.... Try to remember the good things your parents or parent did for you when you were younger. Try to help as best as you can. I think you need some help or release. Take a break, get someone to help out for a day or a few days. Yes, it would be easier if our parents could just peacefully go to sleep and pass on to a better world, all things in due time. We are hanging in there with you. Do not feel terrible for your thoughts, it is natural for us to want some relief. If the stress gets overwhelming, get some professional help or advice.
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kels31 Apr 2021
THanks, Grimgraham4.
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I think it is normal to have these thoughts and you need to forgive yourself.
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
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kels31 Apr 2021
Thanks - I've got a counselor and some meds. I worry that over the course of this I will become much too fond of Xanax myself. When really, would would help tremendously is if my dad could take Xanax to help him sleep at night. But we tried that under a doctor's supervision and it made my dad batty crazy, even at the lowest dose.
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I can relate. My father had colon cancer, severe arthritis and Parkinson's, and at the end, after mom dropped dead unexpectedly (partly from caring for him at home, I believe), he didn't even know his own children much of the time. I prayed God would take him after the morphine wasn't working well anymore for pain control.
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.
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I totally get it. I am in the same situation except no job and no caregiver assistance. My life consists of caring for her. I think I am afraid if the worse coming and don't want to experience this. I just pray and ask God to help. I accept that when it's time He will decide. We are human...and we don't want to see our love one suffer. It's up to God. There is a reason for everything. I find myself thinking thoughts when mom has a Difficult day struggling more and hard to deal with.. Then I tell myself....this too shall pass....just another difficult day. Caregiver duties are challenging. My mom didn't treat me well growing up and now I am the one who has to care for her. I am the Eldest of 4 with no help. My blessing come daily is how I cope. My prayers are daily as well. She has no one else but me. Your thoughts are normal however just ask God to move them right along...your blessings will come. GOD will not place anything on us that he feels we can't handle. Just say a prayer when thoughts occur and know God Is and he is there.
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KaleyBug Apr 2021
This is what helps me to not get stressed out over caring for my dad. Is know I have help from above I just need to ask for help. Usually my help request are for his knees and sending angels to help him stand.
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I too have the same everyday longing for my life back and the ability to plan my future. My mother is 99, has dementia and lives in a memory care unit for the last two years. The first year, I visited her every morning to coax her out of bed and change her soiled clothes and encourage her to go “down the hall” to breakfast. I sorted out her room, checked her supplies and took her soiled clothing home to sanitize. Covid came the second year and the facility went into lockdown. I have only seen her a few times on FaceTime and she was more focused on the doughnuts I provided then me. (I understand that, I just needed to see her and know she was “ok”.). When she had the predictable UTI’s, I got the dreaded, desperate, phone calls to “come get me”.

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.
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I had those thoughts daily up until a month ago. What changed? I placed my mother in a long term care facility that will transition her to Medicaid if she runs out of money. Prior to that I was trying to manage to keep her in what I thought was a beautiful assisted living. I constantly worried about her running out of money. I supplemented her needs with some of my own money. What she never wanted was to be in a nursing home. But it has turned out to be the best decision I had to make. She is actually getting better care and adjusting very well. My mother has little quality of life - but I do think part of my thoughts about her death stemmed from thinking she would be in a terrible nursing home as she continues to decline. And like you say - it’s the ongoing sad situation you want to end.

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.
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katherinemoody Apr 2021
Hi! Just wanted to say your answer to kels31 was perfect and wonderful. Everything I would have said only you said it first and more eloquently. Wishing you the best, katherine
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Those thoughts are because you wish for your time again. Its normal it does not mean you really want them dead. As far as your job, apply for family leave. When applying let them know its not for a bulk of time, but when ever you are needed to help your dad out, care, appointments etc. I was able to get my yearly Family leaves hours to last a whole year. They regenerate at the beginning of a new year. I did this for 2 years. Family leave for when caregivers called off, doctor appointments, when mom was in the hospital. With dad I am retired now so I don’t need it.
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kels31 Apr 2021
Unfortunately my employer is too small for FMLA and when I asked for obligatory state leave, they made it clear that if I took leave I would "win the battle but lose the war." So even the asking for them to comply with the law meant war.
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I can completely relate to your feelings. I feel that way at times and it makes me feel so selfish. I am an only child with no other family that lives close and sole responsibility for my 85 year old father. Thank goodness for my fiancé who is supportive and able to assist at times. This past year, I feel like my life has been turned upside down and caring for him has consumed my life. Everything in my life revolves around his care. My father does not want to accept it may be time to look at assisted living and part of me feels like it is selfish to push it right now when I can care for him and allow him to remain in his home.
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.
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Let me share what happened to me yesterday... You must know that I too often say exactly what I am thinking even when I should be more diplomatic.
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?
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Salisbury Apr 2021
Good for you! People need to wake up to what this is!
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Only all day long! Truly, all day long.

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.
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I have been on this AgingCare forum for 3yrs. Your Question really hit home with me. I was Stocked when I saw already 50 ANSWERS. Wow! I have those feelings also about my Mother. And then the guilt feelings. Damm. I can only tell you Stay on this forum it helps!
In my situation my mother had planned Everything for her last days. She was very thoughtful. I do miss her now. Thank you Mom
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kels31 Apr 2021
Thanks, KatKat. My folks rolled the dice on not making it to being among the "old old," with what I will acknowledge were good reasons to believe they would never make it to their current ages, and...lost? won?...I'm not sure which one it actually is.
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My 86-year-old mother with probable NPD is getting increasingly confused and unwilling to do anything for herself, and complaining all the time about her sore muscles and vertigo while rejecting all attempts to ease these problems. She often can't be bothered to eat, even when food is brought to her AL apartment, and often has bouts of not wanting to go on. Yet she is physically tough and there is little wrong really with her body - her mother lived to 92.

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.
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tygrlly1 Apr 2021
You and I have so much in common..please see some of my posts. When I took my mother for her annual physical, at 91, her Dr told her she passed with flying colors..he knows me from when I worked at the clinic with him and is familiar with all my health issues at 66 and how she treats me. He really laid down the law with her about being so stubborn and demanding and needing to go onto an anxiety med so she can back off from her endless trivial demands and complaints ..and she laughed in his face. There is a world of difference between being frail and confused , due to aging...and a life long pattern of abusing people with a total lack of empathy and compassion. I will feel a huge relief when she dies..and will grieve not for losing my mother, but for the mother I never had. You are in a good place here...take care and there is no shame .
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My husband feels this sometimes about his father who is near 100. And, I too, have thought, how can I do this for years as an only child too for my mom? Then I have felt awful for thinking this because my mom and I are extremely close. I too have read it is a common thought. I feel guilty because I would do anything for my mom, but it is a trying circumstance. So, yeah, maybe not to the degree you are yet because I am the home health aide (I'm retired) and she is not quite unable yet but there is decline. I sometimes resent doing what I'm doing and feel guilty I feel resentful. It is a hard situation. I am sooooo glad you posted this.
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You have friends here on this forum. We all want to help you because we all needed help or need help presently. Tough go- caregiving, my parents have passed but - i would have paid ( their money) for companion help sooner because they enjoyed the interaction and attention from other people. Find 2 good sitters and take some time to get some peace. It will help all 3 of you and give employment to the sitters.
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kels31 Apr 2021
Yes. The have a health aide, but now that summer is coming and all the folks in their age group around them are vaccinated, I think I may start asking for more folks to come and visit them on their porch when it's warm.
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You are not alone in this situation or these thoughts. Same circumstances here. No sibs, no spouse, no support really (yes, I have extended family, but they can't really assist with the daily drudgery). I have taken time off as necessary and my employer had been very kind, but I notice that responsibilities are being transferred to other, younger staff. I've had the same thoughts and understand the sad thoughts, the combination of guilt, relief, and loneliness that comes with it. It's awful, but I've come to the conclusion that it's part of the bargain when you are caring for the old and ill. Not only that, but you can clearly see you own fate...but without the helping hand so that it's equally terrifying. As I'm currently seeing life, it's rather a bleak place to be with only pain in the future.
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kels31 Apr 2021
Oh, I feel you, Tynagh. All good thoughts for you.
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Yes, these thoughts come to mind but when they are gone, we miss them and wish they still were here.
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NeedHelpWithMom Apr 2021
We do miss them. We wish they are with us in good health. It’s agonizing watching our family members suffering. I think that we can find comfort in them being out of pain and in peace.

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.
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Quick note from the other side: I am an only child and exhausted myself caring for my mother post-stroke for two years before she passed a year ago. I had the same thoughts you did, questioned whether her life was "worth it", then berated myself for what are, in the end, very reasonable thoughts and feelings. The stress was enormous, my health suffered, but like many only children, I continued to take on huge workloads and responsibilities caring for mom.
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.
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kels31 Apr 2021
Thanks so much for this, I'm already missing them deeply, esp. my dad who has declined in general more than mom. Thanks for your view from the other side.
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Struggling against having whatever thoughts you have is what's causing the "feeling absolutely terrible" - not the thoughts themselves. It's perfectly normal to think what you are thinking. They are just thoughts. You can just watch the thoughts and say "Of course I want he/she to just go." (for WHATEVER reason!) Have compassion for the part of your mind that thinks these thoughts as if it were a young child who is just trying to survive. Hold them and say "Of course, you want this."
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kels31 Apr 2021
Thanks, Rosewood. That's a good tip.
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