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Anyone feel this way? I feel the guilt and weight of her world on me. After 10 years in assisted living, and now 10 months on hospice, I’m advised she is close. I am an only child with no family and one friend left for support. Wednesday I made all the final arrangements, by myself. The hardest thing was not having anyone to talk to before during or afterwards. I kinda feel panicked, I can’t stop crying and I feel frozen and I want a day off but I’m afraid she will be calling for me. I wish I had a family to tell me it’s ok to not go. Is it ok not to go?

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Absolutely feel this way!! Funnily enough today I started getting nauseous on the way to visit my mom at hospice in her AL facility... She has been there a year! But she is declining more the past few days and I'm dreading the end having been through it with my father.. but also hoping for it, as it is so hard to see her decline. I wondered if the nausea was emotional because she started her decline and now that you mention it I think it was.
I we'll let you know I have numerous siblings and a surfeit of nieces and nephews and not one of them ...not a single one ...has been helpful in supporting me through this process. As much as we'd like to think family is supportive they are not in most cases.. They run the other way because they don't want to deal with their own feelings ....so they definitely don't want to deal with ours.
I Also know how you feel about needing a day off desperately but worrying about her calling for you. I went today and wound up staying for 3 hours because I could see how scared she was. But I just can't live constantly taking care of her feelings or I will completely burn out. And she will sense my anxiety.
And I also have a very complicated relationship with my mother. But when I see her suffering it tears my heart out. So the caregiver relationship is complex in these circumstances where our mothers were Not always there for us in the way they should be. Based on what you've said below are you are a remarkable person for giving her the kindness and tenderness that you are..
But take the day off please... You will be much better for it.. If you can't take the day take half a day. I was there for my dad when he died but honestly I don't think he had any clue. The drugs at the end took care of that and I'm glad of it.
But just know you are not alone and if you need to come here to vent, get support .... The things we should all be getting from our family but many of us are not....there are people who have been there and will love you from afar.
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@ Jet, Hospice Volunteers are REQUIRED by Medicare.
Volunteers serve in all parts of Hospice from office help, they visit patients in homes so the caregiver can get a break, they volunteer in facilities as well as in the In Patient Units, there are volunteers that do vigils, walk pets actually anything that a family needs the Volunteer Supervisors will find a volunteer. For example I do office work and I bake for the patients and families at the In Patient Unit. I have sat with patients, I have walked dogs and weeded yards.
I guess what I am trying to say is if there is anything that you need help with a volunteer can be found to help you.
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I would say it's OK to feel the way you do, but you need to go. You know can do it, you know your mom doesn't have much time left, and you're grieving already, which is normal.

What I know is that if she died thinking you weren't coming, you'd never forgive yourself.

Go for a long walk, watch a pure escapist movie in a theater, or do something that consumes your full attention for a few hours. It will help to distract you from your constant worries, and it serves as a kind of reset. My reset was a movie, but it has to be in a theater, because there's nothing else to look at when you're in there.

You can do this.
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Just know that there is no right or wrong way to feel about this. Do whatever is best for you.

If you are at your wits end, please allow yourself to rest. Resting doesn’t mean that you don’t care. Resting is a vital part of maintaining emotional and physical stability.

You know yourself better than anyone else. Don’t decide what to do based on what others do. Just because something is right for them doesn’t necessarily mean that it’s right for you.

Please don’t feel any pressure to go. This is your personal choice to make. No one has a right to judge your choice regarding this matter.
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Jetcitygirl Nov 5, 2023
Thank you, I appreciate your support and words. I did go yesterday and it was a difficult time as she was asking repeatedly for her sister who has been gone almost 50 years. And she said she wanted to see Santa Clause. So today is Christmas. I will put decorations and lights in her room with Santa nearby.
you all give me strength and I’m grateful.
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If you want to be with mom but do not feel that you can be alone with her Hospice has Vigil Volunteers that are specially trained to sit vigil. The goal is that no one dies alone. But they are also there to support and help family members. If you do not feel that you can be there let Hospice know and they will get volunteers to sit with her.
You do not have to be there with her. As a matter of fact I was told by many Hospice nurses and CNA's that quite often a person will wait until the family that is sitting by the bedside leaves the room, it is then they "chose" to die.
Crying, panic, frozen are all "normal" feelings of grief. And you are grieving.

When making the arrangements for your mom I am sure that you chose to do what she would have wanted and not what you think others would want.
Do not let anyone bog you down with all the Shoulda's and Coulda's.

((hugs))
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Jetcitygirl Nov 5, 2023
I didn’t know there were hospice volunteers. I have little to no contact with hospice.
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I’m sorry for what you’re going through. Does your hospice provide a chaplain or social worker? Maybe you can enlist support from that person. Will mom’s funeral take place in a church? Oftentimes the minister will provide counseling and support, and a lot of churches have volunteers who visit the sick and elderly, and may be willing to visit your mom or you. I hope you can identify someone to talk to, not just now but when you are going through the grief process.
I know that nauseous feeling. My moms in hospice right now as well, but no indication that she is near the end.
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I would suggest you go but not keep a 24 hour vigil. I lost my mother in April. She was on hospice. I was told she likely had another week. She passed a few hours after being told that. It was that fast. I was sorry to not say certain things at the end but in a way I feel she went when she was ready to. She hadn't really wanted to discuss the end and once I fully realized that I stopped bringing it up.

I am so sorry you are alone. I too was an only child. Once she is gone I suggest you seek a grief support group. I did that when my father passed and found it helpful to bond with others who lost different relatives. I realize your mother has been declining for a long time. My mother was too. At times I still find it hard to believe she is gone as she survived many health obstacles. Once she is gone you will be free from a certain burden. It might be easier if you made final attempts to be near her.

I don't mean necessarily do a constant vigil,but be around to a degree. You may find she passes when you are not there which is OK. That is often the situation at the end. Whatever you decide I hope you find peace and search out help you need and deserve.
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Neither of my husband's brothers came to see either of their parents in hospice. I hope they assure their own children that they don't need to come see them one last time when their final moments arrive.

It is okay not to go. If you do go, you might find its not as bad as you think. Best wishes either way.
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I want to say, weather you go or not go, Mom will probably pass when you aren't there anyway. My nephew and I visited Mom in the NH where she was on Hospice. We left at 1:30 and 20min later when she was checked on, she had passed. So you could be with her for 23 hrs and you go to the bathroom, or grab coffee and she passes. Take that day off.
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I know it's hard. All of it is hard. You have been brave and done what you needed to, so don't feel guilty. Wishing you peace at such a difficult time.
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I will echo everyone else. Wishing you peace during this difficult time.
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Thank you everyone. I’m grateful. I plan to retire in January. All support groups seem to happen during the day. I look forward to connecting with one.
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It's OK not to go.

And please, don't beat yourself up over any 'guilt' you may be experiencing. Your have done nothing wrong.

Take care of you--go when you feel stronger. Or don't.

Alva's advice is best.

And, we're all friends here. No judgment.
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Of course it's okay not to go. You've been through enough, and you need to take care of yourself. That's what your mom would probably want!

Tell those who are taking care of her that if she asks for you, they should tell her you love her and will be there later. She's probably losing track of time, so telling her that is a kindness.

Did you know that often they wait to pass until their loved ones are not present? It seems to make them rest easy that they don't have to be concerned about anyone else.

My condolences, and I wish you peace as you move forward.
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We can't tell you that because we don't know you. I long to tell you that, but the truth is that if I tell you that and something happens to your Mom I fear, after this much dedication in caregiving, that you will want to kick yourself.

So know that guilt, by the experts is often taken on so that you don't have to face the REAL elephant in the room, which is grief and the finality of loss. The amount of time and dedication you have invested has prevented you from forming a life and friendship and your grieving will be made worse by this.

Please start NOW to search for support group for grieving even if online on Facebook. Look it up by "grief support group" and you will find someone to speak with the the dead of night. I am so very sorry. Take care of yourself, please.
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I'm not your family, but I'm telling you it's ok for you not to go. I'm sure your mom knows that you love her, and in the end that's all that really matters right?
So make sure before you stop your visits that you've said everything you feel you need to before she dies so you have no regrets later.
And in the meantime please take advantage of hospices clergy and social worker if you're needing someone to talk to as their services are included with hospice.
You're doing a great job. Don't beat yourself up because you're human.
God bless you.
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