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Thank you all for not making me feel so alone regarding this topic. My mother insists she doesn't want to live past when she can't remember my name. I really respect her decision because Alzheimer's is such a debilitating disease. I have looked into California's Right to Die law and am appalled that this diagnosis is not included. So, I am supposed to watch my Mom mentally disappear along with her remaining money. The money is whatever, but she has repeatedly been obstinate about not wanting it spent on her care. I know some of you may criticize me for bringing up the subject matter of money, but when you can't get a Medi-Cal bed for six years in California!!!!! I imagine that finances are a big concern for many. That being said, I commented here to emphasize everyone's individual plights.
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Hothouseflower Feb 2023
I recently read an article in The NY Times about the husband of the author Amy Bloom who was diagnosed with Alzheimer’s . He was able to end his life at Dignitas in Switzerland.
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I really feel for all the people here who are being caregivers to difficult elders in their life.
No one has to do this though. No one has to pay a parent's rent so they can wreck the place.
No one has to tolerate abuse. No one has to do for a person who villifies and lies about them to whoever will listen, or who berates, belittles, or disrespects them.
No one has to put themselves into the bondage of caregiving slavery.
No one has to put their marriages and their own families in second place for a needy elder.
No one has to have their family home turned into a nursing home. Or a cluttered, hoarded mess because a needy elder likes things that way.
No one has to go broke or spend their own money on care for a needy elder.

So for everyone here, please think of this as the Caregiver's Magna Carta.
You have rights and so do your families.

This is why there are nursing and board and care homes. This is why there is Medicaid. Elders who have income and assets are supposed to use those to pay for their care.
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ventingisback Feb 2023
I agree with what you say. But remember, you also cared for your abusive mom for several years at home. Me, too. We all have a variety of reasons why, despite the abuse, we did and do help at home, and did not (some of us for years; some of us never), put them in a nursing home. Sometimes, it's not (and sometimes it is) as simple as: just put them in a nursing home. I wish us all well.
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So sorry to hear this. I sympathize. My 93 yr old mother has lived with me for 10 yrs. She is in good health. Walks with a walker, she won't exercise. Has fallen a few times and doesn't understand that if you don't use your muscles they get weak. She has some pretty good hearing aides but never hears when I speak.
Not disabled.
I work full time, and have to do everything for her. It isn't appreciated. My children blame her lack of respect/appreciation for what I do for her on her age. I think its not too much to ask for a simple please or thank you sometimes, or clean up the crumbs left on the kitchen counter. I'm beyond over this. She will not change either. I think I will go before she does if I don't get a break. Don't think it's horrible for thinking it's time for them to go. You are not alone.
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BurntCaregiver Feb 2023
@kbogie1111

You are more important than your 93 year old mother. Put her in a care facility.
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Six weeks now and they *still* won't let my mother out of hospital because she won't eat or drink enough to meet their criteria for discharge. I have told them we are sure she won't do it while her mental condition is going downhill from the boredom and confusion of being stuck in a ward with nothing to look at and no one to give her personal attention, but they won't listen. I have POA but it doesn't seem to give me any legal right to have her moved, even though I have now found a local care home with a great reputation that is willing to have her.

She now says she just wants to sleep for ever. I don't like the idea of her dying in this ward when she could have one last look at the snowdrops before she goes. In fact, she may not even want to go if she gets better care.

I would talk to my pastor, as at times I'm not sure how long I can cope with this maelstrom of feelings, but he's off on a skiing trip!
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BurntCaregiver Feb 2023
@helen

Do you also have her medical POA? If you do and the hospital still won't allow her to be discharged to the care home you found (which is unusual because hospitals normally are throwing people out as fast as possible), then you may want to visit the probate court and petition for conservatorship. In the meantime would your mother eat if someone brought food to her? When my father was in the NH he would eat nothing. We had to bring his food. When I was in the hospital I couldn't eat any of the food. My meals were brought in from the outside. Not because either one of us is spoiled but because the food being brought was gross. It may help your mother to eat if she's being brought food she likes and by someone she knows.
As for conservatorship, it's higher than POA and will not be disputed. Talk to someone in the probate court. They will help you or will recommend an elder lawyer for you to see.
As a matter of fact, any time I've ever had to visit a probate court and there has been many visits in my life, the court is always swarming with elder and estate lawyers. You can't swing a dead cat as they say. Make a visit to the probate court and see about conservatorship.
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Best advice is talk to your pastor, or a priest .
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Shayshay318 Apr 9, 2024
How is that going to help, they are going to give you a guilt trip.. No way.
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Admins:
Could this post be moved to discussions?
It is a much valued post with a good question that is often asked by those visiting Forum. I would love to see it survive in discussions.
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NeedHelpWithMom Jan 2023
Alva, it has survived in the question section for a long time. This is an ongoing question since 2012!

I think people are use to it being in the question area.

I don’t think as many people check the discussion area and they purposely post things in questions so it will be seen more frequently.
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My wife 80 is now confined to bed and can’t walk or even sit up for a long time. She has onset of dementia. I know she hates how she is and wants to get better but it will never happen. It is difficult to live with her this way. She was always a happy person. I can’t imagine what she thinks
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I agree with you. My mum, 88 with probable NPD, deafness and dementia, who has never had a positive attitude to anything much, got flu, fell and has been in hospital for five weeks. Although recovered from the stomach infection she caught in hospital, she is now refusing to eat and drink enough for them to discharge her, and seems to be wasting away. But as she is constitutionally strong, her body is not giving in easily. Family and medical staff have tried our best to help her and encourage her to get better, but to no avail so far. I totally empathize with your wanting your mum - and all those she affects negatively - to have peace at last; my mum's quality of life was low before the fall and is now non-existent.

My feelings about the situation are so mixed up that I am suffering from stress-related headaches, muscle pain, etc. Lucky I'm already on anti-anxiety medication because of our difficult relationship, or I wouldn't be surprised if I ended up in the bed next to my mother...😒!
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bluebell19 Jan 2023
My MIL is in a similar situation, although the hospital discharged her the next day and she has been in a SNF wasting away and also she is a pleasant person. But my dad is also in an SNF and although he is stable, we have a difficult relationship so I get your feelings totally. And my health has suffered greatly since the fall. Covid in November, flu in December, now a UTI. My chart looks worse than MIL's!

But I would like for my MIL to pass soon, NPD or not, this is no way to live. And selfishly, my life is on hold - I've had to cancel and lost money on a bucket list vacation with my husband (finally no kids!) and we would like to move out of state. It is a selfish opinion, but I'm stuck. Especially knowing that my health is an issue, and I won't live near as long as either of my charges, I feel like my life experiences have come to an end as well.
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My moms a great gal and a terrific mom. I also think of when she goes to her reward and I get a full life all about me. If it is wrong then I am as guilty as you! P.S. My counselor says it is not them we want gone but this life we are stuck with.
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SherryH1968 Feb 2023
That is a great way to look at it! I've been feeling so guilty for thinking my life will be so much less stressful when my MIL passes.
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It sounds as if you are exhausted, both mentally and physically, and just having a weak moment at times. It is overwhelming to witness your mother's extreme physical decline, and the frustration and anger that she is exhibiting as a result. Giving in to it at times is only normal, and you should not beat yourself up over it. There are caregiver support groups and therapists who can help you work through your feelings, and provide you some much needed relief.
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Christian3113 May 2023
I live in tampa Florida and am currently in the process of moving my mom into ALF and it’s an intense and exhausting process to say the least but Even though I know I’m doing the “right “ thing , there’s a whole spectrum of emotions that range from hoping that she gets better and cooperates with me to when she gets viscous and irrational about her stuff and moving into facility , I sometimes secretly wish this would end and she just rest in peace .. sorry for the rant, I’m actually wondering if you can recommend where I can find some support groups for caregivers ? Please
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You're probably right about her really being "fine".

Anyone, friend or relative, who's in very ill condition, with no hopes of recovery and only lots of pain needs to be allowed, given permission to go - if that makes any sense. No matter the circumstances and the feelings, in the end it's mostly about ending the suffering of family or others we know.
In spite of our feelings, when time is up for anyone we know or love, there is nothing wrong with feeling the way you feel.
I have a friend who's cat recently had to be put to sleep, and even she said the same thing - there is no point in making a living being suffer. If it's time we go we need to allow death to take place. Nothing fun or cheerful, but just has to be.
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My dad ditched my sick mom and married a much younger woman. Now that young woman has to wipe him up and care for him because he is old, unwell, can't help himself at all. She calls and rages and screams at me all the time and I let her. I guess I owe her that outlet? I don't know. She's threatening to dump him somewhere. Refuses to spend the money he has left on a nursing home. I'll bet she wishes he would die but she sure did like spending his money for the high rollin' years he was mobile. Now it's clear she hates him but she has power of attorney and all control.
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Isthisrealyreal Jan 2023
At least she is sticking around. My dads thang bankrupted him and left when he needed help.
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I figured it out

My mom is gaslighting me
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Christian3113 Feb 2023
Yup , same here ! She deliberately lies right to my face about all kinds of things that I witness with my own eyes !! And tried to convince me I have it all wrong and that she’s completely fine ! Literally makes me feel crazy
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Its just a feeling, not an action. Do not feel guilty
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I had a stroke last year. Perversely, I didn't die. I even took a bunch of pain meds but just threw them all up. But I am being punished for the stroke, My wife, now the ex, did not help. I fix my own breakfast, go to the bathroom, and take my own showers all NO help.
Marriage is a chimera and so is love. And I am done with my rant.
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BurntCaregiver Dec 2022
@Agentsmith

I'm so sorry that you're suffering so much. 'My wife, now the ex, did not help'. Am I understanding that you were married and your wife divorced you when you had a stroke?
What a POS, if you don't mind me saying so.
Not everyone is so much of an a$$hole. When my ex-husband became ill I was remarried to someone else. I helped his family take care of him until he died. His family became my family. He didn't remarry and needed help. I felt I owed him this out of love and for that I was married to him for a long time. My current husband was understanding. There doesn't have to be hate between exes. I got divorced because my first husband was an alcoholic. That's what killed him.
My friend, don't let your ex-wife make you sour on love and marriage. She's not the example of everyone. You deserve love and companionship too. Everyone does.
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No. And she will eventually. But you have to live on, and not by sacrificing it all now. Remember to provide for yourself . One day you will be old and need care so get long-term disability insurance. But live while you still can.
Ed
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It is not always wishing somebody would die, it is for caregivers wishing the end of it, of caregiving in any way.
On the other hand, as with progressive deterioration with some disease, seeing too much of suffering makes us wonder.
My GF with her Mom being close to death and cancer everywhere was glad her Mom chose euthanasia.
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I was put at ease reading your question as I felt I was the only one who wished a loved one to pass on. I have been married for almost 50 years and my husband is 10 years older than me. While we have had good times together the past is darkened for a decade when he was an alcoholic and put me through Hell. After hospitalization and rehab he is in recovery but we never were able to be intimate after that and he became a recluse. He didn't want to go anywhere and didn't want anyone over to our place but wanted me to always be home with him, Now, 25 years later he has dementia and he is in a nursing home. I feel cheated out of life,
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I found this thread, because I've been asking myself about what to do about my relationship with my 78 year old mother. Luckily, she's very healthy and takes good care of her financial life, but when my father passed away ago about 7 years ago after a decade long battle with cancer. She kind of cheerfully looked at me and said, "Maybe Daddy should have died sooner so I could have more fun." I keep going back and forth in my brain about this, and understanding that there is a toll that comes with caregiving and she's not the brightest person, but isn't this a semi-evil statement? My Dad was literally nothing but caring and loving towards her and supported her his entire life. At another point when he was on his deathbed in the hospital and he was crying sharing stories of his life with me and my sibling, she mocked from the back of the hospital room, "Daddy, such a crybaby!" She then proceeded to list all the clubs at the retirement community she was going to join after my Dad died (this is while he's still alive in the hospital bed). She also wouldn't allow my Dad's older sister to see him before he died, even though his older sister raised him, and she said she would slap my aunt if she came to visit before my Dad died. As of right now, she just wants to have a "normal" mother daughter relationship where we can chat about superficial daily life and have fun like go shopping or something, etc. But I really feel like she's like semi-evil, so I don't really want to interact with her at all (she's said a lot of crazy destructive things to me through the years / threatened to disown me numerous times and does the whole amnesia thing when I address them with her, and instead pretends we have a perfect relationship and doesn't understand why I don't want to interact with her, but I find these comments about my father the most disturbing.) Any thoughts appreciated;
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MargaretMcKen Dec 2022
Dear Curious, For what it’s worth, I wonder how young your parents were when they married, and how much fun the long marriage was for your mother. There are a lot of women (and in fact men too) who feel that they have given most of their lives to a partner who didn’t really appreciate them, or their wants or needs, and are hoping for a few years that might be about them! Post a question yourself, about a parent who seems liberated by the partner death, and see how others have reacted to the same thing!
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Sounds like someone that has never liked herself or her life. None of us pick when we go. What would any of us want in that nightmare of a struggle in our last days, at the mercy of others, but desire the least bit of their compassion? My Mom was a narcissist. Many of her kids would not care for her. I didn't want to but thank God I did, and blessed with patience to see it through and learn that I could love her. It was such a gift to see the beautiful innocent sweet child that surfaced when she felt loved, truly loved. I went from not liking her to absolutely adoring her. I went from resenting being around her to wanting to be the only one to care for her to make sure she got the utmost care. My other siblings that stuck it out also felt blessed. We all learned from her how to be gloomers. Now we learned how to love. Unconditionally. These blessings are unsurpassed because this was our mother. She gave birth to all of us and raised us and she deserved our care, and deep down we needed to care for her. My only regret is her last two weeks, when I could NOT be there. Because of covid, we were not allowed to visit her in the hospital. She sustained torturous mental anguish (severly dementia'ed and extremely frightened) many skin injuries and horrible bedsores due to the hospital. All of which we had been mitigating at home. In those last 2 weeks we could not speak to her, comfort her, or care for her. She was traumatized and we were not even able to say good bye. Be there while you can. She is not gone yet because it is not yet her time. You have been granted more time! Make her miserable day a little brighter. Teach her and teach yourself, how to see the good in life, how to love. Within your capacity, of course. But reach that capacity. I guarantee, you will not regret it.
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I can understand how you feel. My 92-year-old narcissistic mother is someone who sucks the joy out of a room. She has outlived my dad and older brother, as well as both of her siblings and their spouses. She loves things and uses people. I cut contact with her about three years ago because 50+ years of emotional and financial abuse was enough. My life is now much more peaceful, except for the flying monkeys who want me to forgive her and have a relationship with her. I wish I could, but I will no longer accept the way she has always treated me.

Honestly, I don’t think she’s happy. How sad to be completely unlikable and to be unable to make/keep friends. She chases the men and has had friendships with a couple of nice men who live in her facility. Wile I am not actively wishing she were dead, I am looking forward to the peace my mother’s passing will bring.
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I am going through the same thing! There is always something wrong with her!!! All she does is sits on the couch! Does nothing else. She has had back surgeries, but can walk with or without a walker. But chooses to do nothing! My husband waits on her hand and foot, and I won't!. She tripped yesterday and if my husband wasn't there she would have fallen right into our tv and down the stairs. My husband and I want to go to Aruba in March ( a gift from our son), we want to start going to my sons lakehouse in Maine on weekends. Her and I can't even look at each other without arguing. My husband gets up and walks out of the house, because all we do is argue!! I can't take any more. She has no $ and no where else to go. I am the only child
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Lovemom1941 Dec 2022
Not that you asked...but it might be worth the money to put her in an assisted living facility with self-pay and start applying for medicaid to cover her costs.
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Two weeks before hubby had stroke he made me promise not to leave him in a hopeless situation. Example: machine life support.

So as the doctor is telling me how serious the situation is (may not even wake up. If wakes up would require 24/7 care for rest of life) and then give hope to his adult children you can imagine how many friends I had left when I ask doc what is the process for allowing hubby to die. I had almost zero sleep for five days, first time I been in hospital since I was born and even less medical knowledge, high social anxiety, in the space of an 911 call I lost my anchor to the world (hubby) but still had the shell of him, we were living out of home state due to his job so I had no family or friends of my own and my method of asking question was not my finest moment. I felt so ashamed.

10yrs later and knowing the man I knew back then and how he would not had wanted to live like he has since I should of….I don’t know what I should of….I just know he would not had wanted this.

To pray for death is not a sin for those in pain, but rather an mercy.
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Lovemom1941 Dec 2022
IMHO, you did the right thing for the man you loved.
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@ventingisback

Your friend should have no shame in hoping his abusive father dies soon.
I'll be honest. I didn't really have all that much grief when my father died. He wasn't close with us at all. None of us kids were ever any kind of priority in his life. He wasn't abusive though. When he dies my sibings and myself sort of felt like you do when a distant great aunt or uncle who you only see at weddings or funerals dies. Nothing serious.
When my mother goes that will be different. She's been in my life a lot more. I also had a lifetime of abuse from her and have lived as her caregiver. So I will surely feel very complicated emotions which I'll deal with.
Your friend isn't wrong though.
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notrydoyoda Nov 2022
I agree about hoping the abusive father dies soon. Yet, it appears few people are able or willing to accept such reality.

Here are such feelings of an abused adult child found anonymously online.

"I’ll be so glad, when you depart.

This day, this hour, this minute, this second, leave planet earth right now

Either from a heart attack or a stroke, I don’t care how.

There was much punishment you deserved before becoming elderly.

Some things are going in the grave with you as you go into eternity.

. . .

Do you now feel helpless now like I did?

Do you even wish that you were already dead?

I’ve had that idea too fly into my head.

I’m not lying,

I’m glad you are dying

For as you are, I’m finally thriving

You are no longer the one totally in
control

All you have before you is being put in a six foot deep hole.

How I hate your objectification.

Spent years seeking salvation.

Your ending is but my beginning.

Thus, for you it is the end.

But for me it is a new day to begin.

And you said I would see that you were
not the bad one in the end.

Your drama is in its last act as well as about to end.

...

But mama, you’re the enemy

You knew it was wrong, but you did it anyway.

Knew it would cause me pain indefinitely.

Facing your own eternity, and this time you are through,

The train’s whistle sounds for you."
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I love my mother so much, and she is my last living family member. But it breaks my heart to witness her painful deterioration, and it rips me in two because she knows it is happening and tells me she is becoming a useless person who has no brain. I will miss her forever, but I would give anything to help her end this ordeal. Organizations are hellbent on keeping people alive; there’s no money when they’re dead. We are at cross-purposes with them for the most part. We need to develop a societal norm where it is acceptable and embraced to assist a loved one towards the place they want to go, and not be encouraged to keep them on meds, 24/7 care and permanent indignity just to keep them alive.
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Hothouseflower Nov 2022
The lesson I am learning from caregiving my 94 year old parents who are physical messes is that I intend to end my life on my own terms. I am looking at going to Dignitas when my time comes. I think keeping seniors alive past a point where there is no quality of life is of no use to anyone except for the corporations who profit from bleeding them dry.
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Fil is on the operating table again today for his third heart op in 18 months, third time to replace a device that was supposed to have him not have a second stroke. He did anyway.

Hes had eight operations in that time.
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sp19690 Oct 2022
I'm surprised they are installing the same faulty device. 8 operations in 18 months is crazy.
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Posting again on this thread because it’s so relevant. Mom has moderate-severe dementia and is prone to strokes and brief siezures. I hope that a seizure takes her home rather than this horribe decline where eventually she’ll forget how to swallow. Of course her being gone is so sad too….given the choice I’d choose the quicker out…there’s just no win with this situation.

People tell me with a smile on their face that because she’s so well taken care of she could go on for years, yay! I’m congratulating myself on not shrieking when they say that. People haven’t the slightest clue.

Then I feel guilty for wishing this seemingly endless situation is over. On top of duties and responsibilities ( other sib never helped at all ) Mom has had literally about 10 quick seizures where she blinks in and out. She rolls with it and so did I but after the 10th freaking time of this ‘maybe she’s gone, maybe she’s not ‘ my brain just went *phut *. Like what kind of horrible life and death game is this. It’s like being tied to a nightmare. I use all the tricks and self help imaginable but it shouldn’t be this much effort to try to have normal, decent enough days.

Again I have to thank this forum for the space to vent to people who ‘get it’. Blessings and wishing the best outcome for us all!
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DaniLV Oct 2022
Madison. I have never ever heard another person say exactly, to the letter say what I think.
My mum alzo has dementia and ALL I can think of is “I wish she’d die today”. It takes such a tool on us taking care of her; I’m an only child and thankfully she has amazing siblings who also participate in her care because I don’t know what I’d do without them.
people always tell me to “take advantage” of the time I have with her but, what do I have? A person that resembles my mother with no other characteristics. She is just a walking shell at this point. Her speech is basically mumbling and she does nothing but roam up and down the house. Nothing else.

I hate it so much and it feels like the end is never going to come. She will never die, and I am just stuck, scared to move or get a new job that requires traveling or anything like that because then, who is going to care for her?
I understand you so completely.
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FILs stroke turned out to be related to his Guardian heart device leaking, so he will go into the hospital for yet another surgery. This will be the 3rd replacement on the device, the eighth surgery in 18 months.
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Agentsmith Dec 2022
So sorry PeggySue. Sounds like this device is not worth much. Or the surgeons, or both.
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My mom is 98, disabled and in pain from sore swollen joints, sciatica, and has toilet accidents that she finds extremely upsetting and embarrassing. She’s outlived my dad, all their best friends and the neighbours. She’s still living in the family home and since going off her legs, carers come in 4 times a day THANK GOD as she’d refused them for years when she could hardly walk at all which put so much added pressure on me. I’ve been on my knees with mental and physical exhaustion, but always pick up and carry on again. I’m her only daughter and main visitor / companion so I don’t often go out socially and I’m often too tired anyway.
Of course I realise when she dies I will be ‘free’ and please tell me because I don’t know if having this thought means I WISH she would die?? She’s been a good mom, yet an obstructive difficult mom and a martyr all my life and to a degree is still very much in control to do her bidding but lately I do things in my own time for the sake of my sanity.

She’s been anaemic for years and early on this year was diagnosed with a blood disorder (milodisplasure) and has to have life saving blood transfusion every fortnight. It’s quite unpleasant for a woman of her age having needles and drips attached and sitting all day with her mobility issues, it takes it out of her and she hates the upheaval of it.
Her consultant phoned me to ask if moms quality of life is worth keeping the treatment going and he would stop it if I wanted to which would mean ‘the end’ He also said that this illness means mom could pass away anytime and anyone else her age with the same condition probably would which is testimony to how strong a person she is.
I was so taken aback but my answer was mom has enough faculties to know the consequences of ending treatment so It’s HER decision and I won’t play god with her life. The day she tells me she doesn’t want or can’t face having the treatment will be the day to stop giving it to her and I’ve told same to the rest of the family.
I’m 65 now, worked 40 years, raised 2 good girls alone with moms help for which I am very grateful but really want to have more ME time.
I don’t always feel my best and looking after mom is draining. If I can bring myself to do so each night I usually give her a kiss on her forehead and say night mom sleep well combined with the thought this could be the last time … ?
Best news is (as I don't want to come across as a martyr ) I’m going abroad in October for a weeks well deserved holiday, it’s creeping up now and yet I dread telling her I’m leaving her to the carers. I firmly believe there’s every chance she will make 100, and if she does (wow) so be it.
I’ve been told by others who’ve had the experience ‘you’ll really miss her when she’s gone’ I’ll have to wait and see.
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sp19690 Sep 2022
Have you asked your mom if she wants to stop the treatments? Maybe she thimks she has to keep doing them. I can't imagine being 98 and in that much pain and wanting to keep going like that.
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New here and just reaching out. Spent nine months as a caregiver so far, saving a parents life via hospitalizations twice and taking them into my home. I want my life back but not at the cost of theirs. It may be easier to not exist than to suffer a loss. I'm not able to accept a loss if it means I was the cause. I know this is burnout, but I don't see any other path. My sibling walked away six moths ago stating their health is more important. Her only grandchildren aren't mine and mom loves them dearly even though they do nothing for her. All the burden on me and if I don't accept it, I 'm not the person I want to be. Maybe no one can be. Life isn't fair. My S.O. is suffering from my choices and this isn't fair to her either. But, if I go, she can retire immediately. My liver has probably suffered as well since Wellbutrin isn't enough. Ultimately I don't care if I die, since then I'm no longer responsible. Sadly, it's almost a fantasy where I imagine the burden passing back to my (f*ing) brother but I know he will send her to a nursing home and forget about her, so I go on. While I want to continue, I don't know how to live with failure. I'm no longer sure what difference a day, a week, a month or a year make in the grand scheme of things. It sucks taking her to banks and trying to re-arreange accounts based upon her will (I had to make the appt with a lawyer to get this going as well). My boss supports my needs for time off and say's St. Peter will look favorably on me, but I'm really not sure that matters.

Any advice?
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