Can’t get myself to go see dying parent. Am I terrible?

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Can’t get myself to go see dying parent. Am I terrible?

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Hello, my father has dementia. It has been a long and difficult road. He lives at home with my mom and is under hospice care with a caregiver that is there for him 6 hours per day. He is at the point where he is bedridden. He sleeps most of the day and whispers and whimpers. I confirm he feels no pain with hospice and he just seems dazed. I want him dazed and unaware so he does not realize he is dying. My dads wishes have always been to die at home and to be buried in a National Cemetery... I have made sure he will have both.... however I use to visit my parents every Sunday for the entire day. I did this since I married and left their house. I did it up until quarantine. I havent visited since Feb to be safe... but I am on top of his care daily. I have a young daughter and I’m trying to give her a lot of attention because in the past I was always so busy. I feel some guilt because I may be using quarantine as an excuse to not face my dad during this ending stage. I arrange everything for his care... I send them groceries weekly... I handle everything for them... hospice, bills, caregiver, medication, make sure they have food and water... treats... I have arranged where he will be buried... how it will be handled... but I can’t get myself to visit because I cry and get so depressed that I can’t function... I went through this for the last 10 years with my dad... does my inability to visit now mean I’m weak? Am I terrible? At the very last stage I will be there... but I can’t handle it right now and I've made sure he is taken care of. Am I horrible?

Alzheimer's & Dementia End of Life Grief Parents

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Oh, honey ((((hugs))))))).

I could not bear to see my mom in pain, physical or psychic. I promised her ONE thing, that she would die without pain, and I needed to be there to make sure she went out on a cloud of morphine.

Staying all day is not what is needed, but your MOM needs a break, even though she's got help.

How about showing up when the aide is there, checking in briefly on dad and taking mom out for ice cream?

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I’m so sorry for everything you are going through!!! You are NOT a horrible person. Get that word out of your mind right now because it’s NOT true!!! You have done so much for both of your parents. You need to take tune out for YOU. If you don’t want to visit yet, you don’t have to. It doesn’t make you a bad person for not going to visit. You are taking care of them in other ways. Take time for you. Read a book, go for a walk, listen to music, or just relax in a nice bath. Hugs 🤗 to you!! I meant to say “time” not tune.

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In no way are you horrible. Have you not been *awesome* for your dad and mom the past 10 years? Covid has made miserable situations so much more confusing and complicated. There's no wrong answer. It may help to have outdoor visits with your mom -- she needs your love and moral support. Don't be afraid to cry in front of her...it may be a relief for her so you can cry together. If your dad is 84 he's had a long, full life. Not everyone gets to have this. You must remember to count his blessings so that his illness and passing doesn't cause you to be depressed. Death is part of life and you must try to come to peace with this. One day your child may be anguishing over you in a similar situation. What would like her to do? I wish you courage to face the coming days with your parents, and much peace in your heart.

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You are not horrible.

We need to do what we can. As others have said maybe just being there for mom will help all of you.

I think in these times we really need to ask ourselves how we will feel later. Don't not do something that will cause you future grief or regrets.

You have little eyes on you, be sure and set the example that you want her to have, whatever that is. There is no right or wrong here.

I am so sorry that you are losing your dad. May God grant you grieving mercies and strength during this difficult time.

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Thank you. I am 46 and I have 2 siblings that have only taken from my parents... I am the one that has always helped and been there. When my dad could recognize us he would stare at me nonstop and say that when I walked into the room it was like an angel came for him. My dad is doing ok and I make sure he is the best he could be, considering. I have sat beside my dad many times during this rollercoaster thinking he was dying and I said everything I needed. Every comfort... every fulfilled need is because I make sure it’s there.... he is “out of it” now and it hurts more to sit there... my mom is a complaining type... complained when times were good... never seems thankful... doesn’t do her part actually. My brother does spend time with her and the caregiver gives her a companion... I feel like I need to stay mentally and emotionally strong for my daughter. I would not want her to watch me die and bring her sadness for a decade. I have little regret when it comes to my dad... just the last few months... but I don’t feel I can’t take it anymore. I appreciate your response. This is so hard...

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You are not a horrible person...you are HUMAN.
No one with a heart wants to see someone they love in pain or dying.
Now I am hoping not to rub salt into your wounds but...have you visited your mom? She needs you as well. Your dad may not realize even if you are there but your mom knows you are not.
Can you arrange to meet her during some of the hours that the caregiver is there? Meet at a local park or outside spot and have a cup of coffee? (wear masks and social distance)
Seeing your mom might make it easier for you to see your dad when you are up to it.
Believe it or not there are times when someone is in the condition your dad is in that there can be some happy, joyful moments. I have a few photos of my Husband laughing that I will cherish and I took them between moments of sleep. (thinking about them brings tears to my eyes so thank you for the memories)

Again YOU are not horrible this disease is horrible.

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ABSOLUTELY NOT! Horrible people DON'T care. Clearly you care - it shows in every word you have written!
And as far as being weak - you can only handle what you can handle. Be there when you can, and don't feel guilty for what you can't do.
There's a saying I saw years ago and it has stuck with me:
Do you best
Leave the rest
Angels do no more.
(((hugs)))

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You are not terrible. I know how hard it is. When my mom was dying, the last 2-3 weeks were excruciatingly hard for me to go see her. But I hoped that even when she was sleeping, or just out of it, that maybe she knew I was there and it brought her a bit of comfort. She died in the middle of the night, when I was not there, but some of the staff at her assisted living facility were by her bedside, holding her hand as she took her last breath. I was grateful she was not alone. I never viewed her body. I always believe it is more important how you treat them when they are alive than how you mourn when they are gone. You have to do what you feel is right.

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Hi,

YOU ARE NOT TERRIBLE...

The quarantine is not an excuse because the virus is a serious matter. You are doing the right thing. You are just protecting him; the thing is we don’t see the virus and we don’t truly know who has it because some people are asymptomatic (don’t know if I spelled that correctly).

I am a caregiver that works in a carehome. I have two hospice clients. One of my clients’ family stop visiting in order to protect not only their mom but their mom’s caregivers. Your Dad’s good heart will understand why you can’t come and see him. Do what you think is best for you and for your Dad, with everything you mentioned in your post I do think that although you can’t see him in person, you are still doing the best you could to give him the best care possible.

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It sounds like you are doing your best in a difficult and distressing situation, and you do have my sympathy. You've provided lots of help and care from a distance and have to juggle this with the responsibilities of the rest of your family and your child. There is no right or wrong way to behave during this time, any more than there is a right or wrong way to grieve. I accept what some say on this forum, about whether you might in the future regret whatever you do or don't do now, and all you can do up is weigh up the pros and cons of any course of action. If visiting in person is likely to make you ill with the distress it causes you, this is a valid reason to stay away. If not visiting might cause you regret in the future, you need to consider the effect of this too. There probably isn't an ideal solution, so it's best to decide what and how much you are comfortable with and capable of doing, and allow yourself to accept this. If others are pressuring you to do more or to do things differently, remember the choice is up to you as it's your health that's important too. I couldn't be with my dying father for much of the time last year except for several one-day visits involving an 8 hour round trip drive as we lived so far away. This was utterly exhausting and left me feeling really weak for days afterwards from the driving and the emotional toll it took on me. I felt so sick with exhaustion and anxiety sometimes that I could barely get out of bed some days, but had to, to keep running the household - I have a family at home that I also needed to look after. My step mother really pressured me to basically drop everything and move in until he died but this just wasn't possible. This could have been for days, weeks or months and I couldn't just leave my own household for an indefinite period. Instead I arranged for in home care and night time care so my stepmother had some help without me being there. She still felt I should do more and move in but I reached the stage where I'd done all I could. One year on, I don't regret the choices I made. I don't feel I let my father down in any way. I loved him and he knew this, right up to the end. I feel no guilt - I am only human and have my limitations just like everyone else. I hope this helps you and gives you permission to make the choices that you are most comfortable with.

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Does your father still recognize and know people? To me that would be important right now. If his Alzheimer's is so bad that he doesn't seem to know you, or his illness so far advanced that indeed he is unable to know, then I would say you are OK not going. You seem very very informed within yourself about what you are doing and the reasons for it. For me the most important question is you, and how you will feel about it after your Dad is gone.
For myself, with a Dad I so loved, I would have, had I had the opportunity, gone to see him that last time, masked. Told him how much he meant to me and how much I loved him. It would have been important to ME to be able to do that. But each individual tries on their own.
Has hospice given you any suggestions or guidance in this?
I could not be with either parent at the moment of death due to suddenness, nor with my bro in May due to covid times. Had I opportunity, I would have taken it. As I said, it is up to each individual. Clearly you are a loving and caring daughter. THAT isn't in questions at all.

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I don't think you're horrible.

I think your mother could perhaps do with seeing your face. No?

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Hi my dear.

Rest assured that are are giving yourself to, and helping, your dear parents. I have compassion for you as my dear Mother suffered from dementia and Alzheimer’s and yes, helplessly watching deterioration for anyone, especially those we love, is extremely hard to watch.

By posing this question of guilt makes me wonder that perhaps you have answered your own question. Big hug here. I believe that guilt is part of our morale compass and I just wouldn’t want anything to happen to your Dad, or your Mom, with you feeling uneasy though please carry with you that you have taken excellent care, and showed loving concern and compassion, to your parents.

Perhaps going over there, if safe virus wise, a few times per week, staying for whatever timeframe you deem appropriate (an hour or a few). I’m sure your dear Mother would appreciate the moral support. I know this is difficult, to say the least, for her as well.

You can get advice from hundreds of folks, but in the end, you have to make the decision best for your situation as you are the one that looks in the mirror at your image and you need to be happy with what you see.

I was married (not first marriage) for a month when my then 85 year old mother moved in with my husband and caring for her was one of the most difficult things I have ever done. Her journey ended in January (thank you Lord). Do I wish at times I would have been more patient...heck yes, but the big picture, I am proud of what I did and I am left with “it was an honor to care for my Mom”.

There were so many times when I thought “I just can’t do this anymore” and you know what? I did!! And you can too, in whatever capacity you come up with. I remember posting on this website a question to the same effect. “Am I terrible because I just want this to end,” - I would receive support from folks that knew best as they were going through it, folks on this forum.

Hang in there - you’ve got this! Rest assured that this part of your journey, as all parts, has an end.

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Lookin4help, what would you want your daughter to do? If she was in the same spot you are in right now, what would you want her to do? There is no right or wrong answer. Do what is right for you and what is in your heart.

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Perhaps think about why this is so difficult for you. I wondered if you were afraid of the act of dying, but you say that you have ‘sat beside him many times during this roller coaster thinking he was dying’, and then you said everything you needed. Perhaps you don’t want to repeat those visits, or the feeling when it wasn’t the end after all. One option might be to visit the house, going in briefly to kiss him and just say goodbye. There is no need to stay to the very end (and many many people stay a long time and still miss the very end anyway). A last quick visit might make you feel a little better, after it is all over. It might also mean that you don’t need up explaining what you did and why to other people, which could be distressing for you. Don’t worry either way. Remember that you were your father’s angel. Those were his words to you, say them to yourself now.

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Lookin, you aren't terrible, but, just bcz your dad has dementia does not mean he would not benefit from your visits. Also, I am unaware that in home care routinely involves non visitation by family due to Covid concerns. More the opposite. So I don't think you should cite Covid as a factor as if home is a facility. The relevant point is, despite the potential benefit to your parent of a visit, there's more of an adverse effect on you. There's a wide range of human behavior in this situation ranging from nonvisitation to avoid this effect, to frequent visitation in spite of it. I note you are doing what you can, short of visitation...which...while not ideal, makes you a good person in essential ways under these circumstances.

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ALZ AND DEMENTIA, is a hard long road to travel. VERY HARD.

Tell him he is not alone, you love him, and it is okay... HE IS OK.

so, some people pass when alone Some people, prefer that. My mom was basically "calling me to come back, she was going" got in my car, and there was an S LOAD of texts from my sibling.. MOM IS GOING COME BACK NOW.
It is usually a 3 minute drive.. got there in one minute... I missed her. nurse and sibling counted it down that she died when I walked in door...NOPE, it happened when I was watering the plants she gave me. She told me, come now, come now, I am going.. I "told" her to wait, I am almost done. When I started watering the lawn, she "called out" I am going, come now.
I was up all through the night with her before, worst night in my life - hospice left me. nurse gave me directions on how to crush and slather pills in her mouth... :(
when i threw down the hose and headed to my car, I saw my cell phone was just blasted from by sibling, "she is going, come quick" basically those words..

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As weak as you think you are... You will have a sense of strength now. go see him, play his favorite music, talk about shared stories and memories. He would love to hear them again.. it is ok
Go See Him.. You will NOT REGRET IT.
Put a SMILE On your Face, wipe those tears, hold your head up, HOLD YOUR HEAD UP...

SHOWING EMOTIONS IS NOT A SIGN OF WEAKNESS.
Embrace this with your family and your friends. IT WILL BE OKAY.
YOU WILL FIND YOURSELF STRONGER THAN YOU EVER THOUGHT.
TAKE A DEEP BREATHE AND WALK IN - JUST WALK IN. SMILE AND THANK HIM FOR YOUR LIFE, WHO YOU ARE, AND YOUR LOVE. TELL FUN MOMENTS AND STORIES, AND ESPECIALLY THE HEART FELT FUNNY ONES.. :)
Does he have a favorite song? play it for him.

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IF NOT FOR YOUR DAD - THINK ABOUT YOUR MOM... IMAGINE HOW LONG THEY HAVE BEEN A COUPLE...DATING, ESCORTING, GETTING TO KNOW EACH OTHER, MARRIAGE, KIDS, you know how much they have gone through together.
Your mom may need someone in her corner too....
A lot of us on this forum have been through this as well. It is so hard. very hard. but it comes down to life, and life engulfs, from beginning to end.
please try to gather the strength to see him, mom, family, and friends, before the end.
You will be okay. You will be surprised by the calmness and stability you will have when you do. it will be ok whatever you do. your dad loves you, and you both know it.
You have to do what your heart says, and feels right for you. Just let it be KNOWN: IT IS OKAY.

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play his music, visit w mom. take care

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Agree!! Make his space comfortable and familiar.
In our dad’s last week at home, I got a portable record player ($40 at Walmart) and we played his vinyl records ~ Frank Sinatra, McGuire Sisters, swing music, John Philip Sousa, classic broadway musicals, and records from dad’s service academy (Coast Guard) musical groups. My brother and I also treated him to a swab dipped in bourbon (his favorite!) on his lips. Although dad was incoherent, he definitely reacted to the bourbon in a funny way. It was a shared humorous moment that we will always fondly remember, despite dad’s being near death.

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But how is your mum? Does she need your support at this awful time? I know its hard and you seem to be giving loads of practical help. I wish you peace with whatever you decide. I would suggest you "pop in" for a brief visit and see how you cope. Best wishes.

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I took care of Moms needs to the best of my ability. Like yourself, I was her daughter, social worker, coordinator for everything, and visited her a few times a week to make sure everything was ok for her and to spend time with her. I was on call 24/7 for her. On the last day of her life here, I went over early and spent 7 hours with her. I was so close to her that I knew she was leaving. Those( siblings, nephews, inlaws) who did minimum for her were called by hospice, after I called hospice. I didn't want to comfort the Hypocrites, in there crocodile tears moment, so I bent over mom and whispered in her ear"Mommy I love you, now Go with God." A tremendous peace came over me. May that same peace comfort you, YOU ARE AN AWESOME DAUGHTER!

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It is shocking and exhausting. Stay until the end. It is your last moment together forever. Forever.

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Maybe not forever.

Some of us believe that we will be going to a better place and our loved ones are going to be there.

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No you are not terrible. Not everyone can handle bedside visits. Not everyone is able to be present at the time of death. And not every patient wants to be surrounded by people when doing the hard work of dying. You are managing bills and shopping and helping them greatly. Contact the hospice social worker or chaplain and ask for anticipatory grief support during this time. They may offer you some education to help you understand the process, and manage your feelings. They may have ideas about alternative ways to take an active part in this time, like writing letters, creating a memory book, etc. You are, and have been, grieving in your own way. Frankly, if you are an emotional mess while visiting, then your mother may spend her energy worrying more about you and that’s not helpful! Whatever you decide to do, only you know your limitations and your strengths.

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No, there is nothing wrong with you. Everyone handles death differently...you are doing a lot as it is, if you can't watch your father dying at his bedside, than don't. the wake and the funeral is enough torture for anyone. don't feel guilty.

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It appears you are suffering from grief in advance of his passing. Please look up Kubler-Ross stages of grief. You are not denying that he is about to die, but maybe you have this feeling that to visit would hasten his death. I would suggest focusing on the fact he is still alive. Maybe arrange visits with facemasks on and social distancing so you can tell him you love him. Bring you daughter so she can visit with her grandpa as well. The visits are not to say "goodbye" but to reaffirm your relationships. Your mom may also appreciate seeing you in person too with CDC precautions in place .

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What kind of guilt will you have after he is gone? Seeing him now may alleviate that future guilt. Go for your mother. You are strong.

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Horrible? No. But a bit self-indulgent. We all have to do things we don't want to do. Go, you'll feel better about it even if it's depressing. The very fact that you're asking this board for validation seems to indicate that you know what you have to do, but you are just avoiding it.

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My dad passed. I was there at the end as I planned to be... I just don’t believe in sitting and mourning for days and letting my world fall apart around me. The funny thing about many that comment.... the ones that say I SHOULD be there.... heres what’s different for me... I showed my dad love all my life. I was there spending time with him every single Sunday and I am 46. I never stopped being there to help him with his restaurants... with his real estate... I wrote every document and signed for him when he started to shake... I was like his right arm and I did it and was there while he could remember... when he was healthy. Self indulgent... you remarked? Work on how you express yourself or refrain from commenting on sensitive subjects.

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Good morning, I couldn’t agree more with the previous post especially tynagh. U are avoiding and making excuses. It is great that you did all the other things but nothing is more important than your presence. So go see your dad. I promise you, you will hate yourself later if you don’t. I’m sorry you are going through this. We are all at some point will have to face some sort of loss but nothing is more painful than loosing a parent or a child. God bless

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I don’t believe you are horrible. You’ve certainly done all you can. I’ve been going above and beyond with my mother for the last three years. My mind has stopped working from fatigue and exhaustion....I’m a shell of a person....You have to think of your daughter and yourself. Your mother is there. I’d seek therapy and forgive yourself.
was he abusive? I can’t see my mother anymore for various gut wrenching reasons....... therapy has helped me start to figure out why. Good luck.....stay strong....

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Thank you for your comment. My dad wasnt abusive... he was a tough father but good. I am a big believer that you are no use if you are not taken care of yourself. We have to be selfish sometimes otherwise we die and if we die we can’t do anything... find a way to get a break. I appreciate your comment.

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You are not a terrible person and the dad you knew has long been gone. It sounds like he would not be aware of your visit. Your mom needs support so try if you can to be there for a short visit. Take your daughter to visit grandma. Dying is a part of life but everyone has to handle it their own way. I don't want you suffering from regrets after he passes.

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Can’t get myself to go see dying parent. Am I terrible?

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