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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?

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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 don't think you're horrible.

I think your mother could perhaps do with seeing your face. No?
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First of all, to anyone who has scrolled down and was flabbergasted to find a massive lack of compassion for how @Lookin4hlp feels, I'm on your side.

It does no good to speculate, but I must say, I wonder if most of these people have not seen much true suffering or death in their lives.

I'd also like to say that I realize the dying and/or seriously I'll person in a scenario such as this is often hurting, in multiple ways, more than the caregiver. However, that should NEVER be used to discount how the caregiver feels.

I am in a similar situation. My father has dementia, in addition to multiple other ailments, and is now bedridden. It's been a rollercoaster of making some positive strides in recovery, and his baseline falling lower with each low point. He will never recover and will continue to decline. I know this.

Both of my parents have suffered much in their lives. Countless doctor and hospital trips, surgeries, and scares. My sister died when I was 5. I never met my grandfathers, and my grandmothers died when I was still young. My best friend died in my early 30s. I've had other friends and many of my parents' friends die along the way. My mother died in 2018. I've seen a great deal of suffering and death in my 40 years on this planet.

I am my father's POA. While we did have home healthcare providers come to his home 2 or 3 days a week, perhaps an hour each time, to attempt therapy with him, I was his sole family caregiver and helped him until his needs exceeded me. I ran errands, took him to Dr visits, arranged his pills, paid his bills, etc.

He has been to so many medical facilities and is currently immobile in the hospital. I remain extremely involved in decision making and up until recently, I saw him often.

I am currently at a point where it is extremely emotionally difficult to see him. I only want the best for him. I want to be there for him in all ways, but everything has added up. It hurts, and I feel guilty and regretful, but it feels overwhelming. He is my last living close family member, but I am burnt out.

And for those of you who would suggest counseling, I do see a counselor who I feel is helpful and good at her job.

I write all this to demonstrate that not only do we all have and live different life situations, but we all have different capacities for dealing with these situations. Even if there was no background information to go on, don't be so fast to judge how someone "should" act or feel.

@Lookin4hlp, you are NOT weak, you are NOT terrible, and you are NOT horrible. You were doing what you, AS you, could do for him. The fact you even posted and asked questions on this site makes me feel you cared deeply.

I am sorry to read of your loss. Please know that as much as a stranger-on-the-internet's opinion may or may not matter to you, I understand how you must have felt. I truly hope you and your family are coping the best you can. Have a good life.
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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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Lookin4hlp Aug 2020
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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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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Imho, you are NOT horrible. You are a superlative daughter!
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Lookin4hlp Aug 2020
Thank you for saying that.
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Rule of Thumb: if you care enough to ask you're not terrible.
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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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Keep the fond memories of the times you shared with your dad. To me you went above & beyond the duty of a daughter. You're not horrible, but a kind, loving, caring & very responsible person! It's very hard to see your loved one in the last few days of their life & people deal with it in different ways. Be kind to yourself & don't worry about what others say. 🙏
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