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I have flown several states away from where I live now to see my dad. He is eating very little, still drinking fluids, but that comes and goes as well.

He has lived a long life, but I don't think he was ready for his body to give out on him. He has been in a nursing home for a while and a relative, that lives close to where he is, took care of him until she could no longer do it anymore. It was tough to see him end up in a nursing home, but he needs 24 hour care and lots of people to help him. Now, I do not think he has long to live.

He suffers from severe gangrene on his feet due to vascular issues and he also has alzheimer's disease. He recognizes me, but sometimes has days when he is really out of it. He sleeps a lot and is on pain meds around the clock. I have been visiting him everyday, holding his hand when he is in pain, trying to talk to him even though he only answers questions and almost always with one word answers. He is so weak and it's so hard to see him this way, but I want to be there for him. I want to stay until he decides to leave this world. But I feel so powerless. I try to give him healthy juices to drink and anything full of vitamins so he gets enough nutrients to at least have some energy. I've shown him pictures. I'm doing anything I can think of to give him comfort.

I'm scared that I might lose my job. I have been up here a few times now and spent a long time away from it - even using up sick time in the past. I'm scared that I might decide to go back home for a while and that's when he'll die. I'm scared that he will leave this world without anyone by his side to send him off and tell him that he is loved. I went through that with my mother. She ended up in a nursing home, but it was only supposed to be for a little while. I thought she was going to be OK, even when she started to have swelling from excess fluid. In fact on the day she passed away, my aunt had called and the home said that she was doing better. She wanted me to visit her for father's day. I hadn't called her in weeks, but was planning to visit a few weeks later for the 4th of July. She loved that holiday, but she didn't make it to the 4th of July and I never got the chance to tell her about my plans. She had a heart attack. From someone that has been around many people that are dying, that's what I am told will most likely happen to my dad. His heart will probably just give out and it will be unexpected.

I know my mom would have wanted him to be here for my dad. However, I have such a mixture of feelings - somewhat conflicting - about my dad. I want to stick around and comfort him. I want him to pass away soon so he no longer has to be in pain. I want to help him feel better and be healthier. He was an alternative health practitioner, so sometimes I think he would have wanted me to try any natural solution possible. Then, sometimes I think he is just tired of the pain and would prefer that I let his body simply die. He is so miserable. Then, it all just seems so overwhelming and I want to just get away from it and not face it.

I am dealing with this largely by myself. My aunt is here, but she is going through different emotions than I think a daughter would. Other family members do not want to be here. They cannot bear to deal with it directly - only through phone calls. I often feel so alone.

I need to hear from other people that have gone through this and have them help me figure out ways to cope and, also, bring comfort to him.

Thank you for any advice or comfort you can offer,

L

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I am so sorry you are going through this. It is very hard, and extremely painful to watch. When my father was dying, it was horrible. My brothers couldn't face it; so they didn't show up, although they called continuously. My mom was exhausted, and my sisters and I were terrified he would die alone. We struggled to all provide him round about constant care and companionship. The last few days he didn't know we existed, but that didn't matter because we knew it was the right thing to do.

Does your work have a family leave policy? Have you talked to your boss or the Human Resource Department at your work about the situation?

Have you talked to his doctor about his health issues, what you should expect, and even if there is some kind of time frame you are looking at? What are the nurses at the nursing home telling you? Do they have a counselor at the nursing home? Many homes do, so take advantage of that.

Try to talk to your other family members about your desperate need for others to come be with YOU.

At the end of my father's life, it was obvious he was suffering. It was horrible to see him that way. I wanted him to live, yet I wanted him to go ahead and let go. I didn't want him to continue suffering, and I had to accept he was not going to get better. I felt guilty for wanting him to go ahead and die, but it was terrible seeing his quality of life dwindle to zero and know he was never, ever going to get better and he was only going to keep suffering. We all told him it was okay for him to let go. He appeared to be relieved, and he let go.

You are in a tough situation, but you are doing the right thing by being there for him. That will help you later.

We will be thinking of you and your father,

ModKonnie

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Hello. I am so sorry for what you are going through. My dad past Sept 17 2012. My dad's cancer came back two years ago. It was inoperable. The doctors told us he had 6 months to 2 years. He made it almost two years but he had no quality of life and pretty much lived in long term care hospitals. He didn't talk much either and was very depressed. He had a lot of medical issues growing up. He had already fought cancer a long time ago and had a lifetime battle with chrones desease but that never stopped him the previous years. He was a great father and we had a great childhood doing all the things a family would do together. The past two years were so hard to see him like this knowing there was nothing more we could do. My advice to you is be there as much as you can but know that you also need to live and take care of yourself too. Stay close to your aunt. You guys are dealing in your own ways but stay as close in contact as you can. I felt the same way about just wanting him to pass on. I felt guilty but I knew there was no hope on him getting better. I miss him! I miss him so much but as time goes on, it gets better. I do have my moments and they come out of nowhere. Talking to people, I know that is normal. I will be thinking about you.

Diana

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stargazer5510

ModKonnie's offered some great ideas for possible resources and I hope you can find something that will help you care for yourself during this very difficult time. You so much need some gentle support.

I'm sitting here struggling to find something of meaning to say, but I only can think to offer you my deepest care and concern. You sound like a warm and wonderful daughter with just too much "life" to deal with alone right now. It's really true that the only constant thing is change. I'm hoping a pathway forward will open up, even if it's just one day at a time.

((((((((((hugs)))))))))

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hospicevolunteer

Dearest L,

I am sorry to hear that your father may be dying soon, and I'm also sorry about the fact that now you may face pressures from work on top of what is more than likely an enormous roller coaster of emotions. I'm going to try to answer your post starting at the top: it probably felt difficult that your father moved to a nursing home and on top of that he also suffers from Alzheimer's disease. When a person moves to a nursing home it can be very difficult to all involved. When under that kind of pressures it may be hard to realize that in fact it was the right choice - not easy - but probably most beneficial to your loved one.

If you are inclined to do so, I'd invite you to keep track of let's say...interactions with your father, loved ones, facility staff etc and also about yourself: your feelings, things that are bothersome as well as positive things. I am bringing this up because right now there may be all kinds of things going though your head, and sometimes down the road you may find the little notes and a lot of things may fall into place - the notes may very well have someones last words on them, or perhaps something that doesn't make sense now: that may create the AHA! moments in life - literally: "ooh THAT's what he meant..." It has brought many great comfort...

When a person suffers from Alzheimer's one often faces many losses well before a patient might die. The decline in loved ones is incredibly difficult for a lot of people so please, if you can, try to remember that your feelings/emotions are absolutely normal and valid - positive AND negative and everything in between. I am not aware of the details of your father's decline, so I'll share a few things with you that hopefully may help: it may help if you 1. address him by his name on the first sentence of every conversation or, sometimes even every sentence! 2. Use kind facial exp<b></b>ressions, 3. It oftentimes helps people with Alzheimer's if you only ask "yes/no" question,

4. If/when you father only answers questions but does not initiate conversation: try to not take it personally - being that ill or near death: a simple conversation may take a lot of energy and that may also be part of the reason why he sleeps so much. 5 Something worth a try: some people who are barely verbal anymore - to ask your question by using a melody line. I realize that that seems strange, but many people who no longer speak actually react to it and reply in singing form! 6. When people that are as sick as your father perhaps moan or something: it doesn't necessarily means he is in pain - sometimes ones sheets are bunched up and/or other things - body language says a lot too. When it comes to visiting, one thing that often is both underrated and uncomfortable to a lot of people, is to sit in silence. Just sit. When that happens, many people feel like they are not helping, but in fact - it is one of the most precious gift to all involved.

7. How beautiful that you hold his hand: something that may be beneficial for you AND him, is perhaps combing his hair, putting some lotion on his hands - the power of touch is one of the most precious bonding methods. If sheets are bunched up or when applying lotion *please, be careful: in the elderly the skin tears really easily, so gentle is best) The bringing of the pictures is wonderful too. Perhaps you can create what I call a "living shrine" this is simply a little table with items on it that mean a lot to you and/or other loved ones. That way your father can see all these tokens of appreciation and it is also a great tension breaker - should you encounter that. It also may help your father as well as loved ones who cannot handle visiting him at this point - because THEY can show father their appreciation and it can help HIM because YOU perhaps put the "living shrine" together and he gets to see that those who cannot come are indeed still holding him in their heart AND that you went out of your way to bring him comfort... For you it may be beneficial because you are actively involved even if you live far away.

You may be aware of this, but maybe you can ask a loved one or staff member to hold the phone by his ear and you can talk to him while being back in the state you live in. If staff members are too busy, perhaps you can leave a voice mail with loved ones (IF they visit). If you visit and have a laptop, perhaps you can record other loved ones and play that for father (careful where to put it though) Children can make drawing and such or lend him their favorite to to sit on his shrine. Another way that you may be able to help even when not there, is to tell loved ones and/or staff members about father: you see a lot of sick and/or dying people crave a sense of normalcy - that means if father is used to watch..let's say...wheel of fortune: then ask someone to turn it on if you wish, it often has a calming effect on people. For a lot of people getting permission to die is very important. I've heard many times that people say "nah, he KNOWS that i'll be sad but its okay to die" - oftentimes that is true *however, I've experienced many times that the person who was dying and told, STILL needed to hear it again...

I fully acknowledge that you feel torn about wanting to be with him. That is something many many people wrestle with and there's nothing wrong with that: it merely reflects your love for him.

This may sound strange, but one overall doesn't have to be with someone in the physical for that person to know that people care and love him/her. We communicate on so many different levels...

I am just mentioning that, I don't try to diminish your stresses.

Self care is highly important and believe or not: you going back to work if you need to, may also benefit not only you - but father as well. You see, sick and dying people oftentimes worry about loved ones - what will become of them, are they going to be okay etc.- And when practicing self care by going to a park, or lying down and yes, EVEN going to work in another state MAY just help your father because oftentimes people then see that you are taking care of yourself now...before s/he passes away - it often settles one's spirit...to think you'll be alright. Make no mistake: that doesn't mean that I discount your feelings...I can only imagine that may be a difficult decision for many reasons.

Every person is different and so is the journey of illness, and/or the dying process. Some people say their goodbyes and pass away without anybody being present. This can create greatly uneasy feelings among loved ones and oftentimes often they feel guilty. In my experience, it is the dying person who dictates when s/he dies and I've literally camped out for multiple days and nights with people and right when the patients loved one(s) would leave the room - THAT is when the patient passed away. There may be many reasons behind that - for instance: some people are simply private people and the dying process is such an incredibly personal journey. And just as often, it is the patient showing loved ones one last gift: they want to spare you from witnessing their death - EVEN those patients who are unresponsive are known to do so!

As described above, a lot of dying people tend to somehow graduate from life at their own pace/convenience. That may be - doesn't have to be - that may be why she passed before the fourth of July - maybe as in trying to spare you from witnessing her death AND she may have wanted to keep that holiday "nice" for you: does that make sense?

Your mother may very well have been doing better when your aunt called the nursing home. Of course I do not know your mother, but there is a phenomenon among people who are getting closer to dying: it is called "The Last Hoorah" and basically what you may notice, is that a person may have more energy, more interests again and they may seem better than ever! But often that may be an indication that they may pass away soon. That may be quite difficult to grasp for loved ones because they may get to see/experience that person the way they used to be.

Being aware of some of the things I shared does not diminish your feelings and/or emotions - of course it may be very difficult to feel so very powerless.

I am not placing any judgement here, but I would never predict how "it " may happen with/to your father: the dying process is a truly sacred and unique journey and even when meant well, a statement like that oftentimes may create extra anxiety.

I wish I had something profound to say. Sadly, that is not the case but I would like to stress that all of the emotions and frustrations are absolutely normal - even if people sometimes wish for a quick passing of their loved one, and even if sometimes people get angry at the person who may be dying: all normal, all understandable and all valid feelings.

I'm not sure if anyone can see that I am editing this extra little piece: you may be correct about your aunt dealing with things differently than you do - that too is so very personal. But I wanted to share with you that oftentimes parents, grandparents and sometimes siblings even - the may be dealing with a specific factor that often stems from guilt. I am not saying that it is the case with your aunt, but parents, grandparents and siblings oftentimes struggle with the fact that they "should" have prevented that someone (in this case that would be you) had to go through such heartbreak - they may feel they should have protected you.

I sincerely apologize for my 20 page email, I served as a bedside vigil volunteer for six hospices and palliative care organizations at the same time and being supportive at that sacred time is a true honor and I always love sharing my experiences... I hope that perhaps something, somewhere in my reply may bring you a little comfort...

I wish to stay in integrity where it comes to respecting the rules of this website.

I am not familiar with the site just yet, so I'm not aware of what I may post or not - but if anything in this reply may be of help, then I invite you to visit my channel on YouTube. I have more than 125 videos on there and in a lot of them I explain about what one can do to help dying loved ones and their loved ones as well. Also a lot of videos about the dying process and poetry and music I am just the girl next door, so I explain topics as such - no need for fancy words. All of my videos are absolutely free to download and/or share - May they be of comfort...

I wish you and your loved one(s) a lot of strength and I send a hug along with that.

Please, feel free to contact me - if there is something that you may wish to hear a bit more about.

On YouTube and/or Google you can find me under "midwife2thesoul" Here is the link:

https://www.youtube.com/user/midwife2thesoul?feature=mhee

I shall try to find out if the videos also can be shared on this website and I also have a 138 pg book that I also share for free - maybe one can post files on this site?

Be Well, Stay Safe - All Ways and Always,

Francisca, midwife2thesoul

Aurora, Colorado

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