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I have not been on here much as time is always taking for tending to my father. I know that he has been failing and I think when I read it today for the first time on paper it hit me hard. I don't think his doctor has told him how long he has and no one really knows but when they state life expectancy - six months or sooner it left me with so many emotions. Like I said I have been caring for him for almost two years and knowing he does not have long with us each day puts my reality check more closer, seeing it on paper. I just would like to ask any of you what you did or how you handled this with your own loved ones end of life issue. Thank you for reading and hugs to all of you. Caretaking is a job and for the most part is out of love. Burnout comes everyday and it can drain you. I hold on to hope and only pray that when the Good Shepard comes to take him Home that he will no longer be in pain. It sure is the most difficult thing I have ever gone through in my entire life.

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Crystal224: I can feel for you. I remember when they told me that about my dad. Not good bedside manner. When my daughter found out her baby had anencephely (brain didn't form and she would not be able to survive once the umbilical cord was cut), the dr. just very bluntly said (as he was doing the ultrasound, and we saw Juliet's little legs kicking ), "your baby is going to die"! Just like that! So I understand the shock to your system even tho you know your dad's eventual fate already. I'm dealing with that now with my mom. I can't even face the fact that she may become a "permanent resident" at the NH. It's going into the 3rd month, and each time they have a "care meeting" to talk about the next "plan", I say she is still there temporarily. I know I can't care for her at home the way they are caring for her at the NH....but I just can't bring myself to that point. It is the hardest thing to face, but the peace and clear conscience you will have after your father passes will be priceless. Know that you are are precious to him. Keep yourself fed and well rested. He will be in very good hands with hospice. They helped me once before, 3 years ago (but mom somehow responded to all the love and help she was getting, and as she said "hospice fired her".) She got back to her old self. lol This time I can't expect another miracle...but you have the love an support of this group. Hang in there, my thoughts and prayers are with you.
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@Jeanne I meant to say on the issue should he pass not of his passing. Gosh they need a grammar and spell check on here:) Excuse my errors I am totally exhausted as I have been tending to him and trying to study for my finals. Hugs to all of you! What a great bunch of caring caretakers!!
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@jeanne thank you so much. We do have Hospice coming in now. Dad has me down for the health care directive paper as Hospice said my younger brother was on it (dad had changed it several times) so they asked my father when they came to the house the second time and he signed or I signed it. In retrospect on this issue we all have decisions to be made as it may be only myself tending to him with care but he does have three other children. At one point I almost threw the towel in and said let my oldest brother sign it but he said he can't handle the medical stuff. So it is on me. Of course as long as my father is able to relate and talk now all the decisions are of his from what I was told from Hospice.

On the issue of his passing he has gone back and forth with me over the years on that so I am still uncertain what he wants but all in good time like you said he will tell me. No one in my family has money for anything so here again I feel it will all rest on me at a time when is the hardest. I never thought I would be talking about these things as openly as I have in here but something tells me it is a good thing to get these out. I thank you so much again Jeanne. Hugs!!
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crystal1224, if your father is not yet on hospice care I recommend that you arrange that as soon as possible. I hope you will find it as great a comfort as I have.

I don't know if there is sufficient value in getting things in order at this point to warrant all your worry. What will be will be. If he has no assets and nothing of value to leave, what does it matter if he has a will? If he has not told you what kind of service he would want and has no money to pay for one, then you can plan whatever you'd like and that you can afford. You can't turn back the clock and have him plan ahead for these things now.

The one thing that might make sense is a healthcare directive authorizing you to make medical decisions on his behalf if he cannot do so. Perhaps after he sees the doctor he will be willing to talk about that.

Peace to you.
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Hugs and prayers Crystal. This is the hardest job both physically and emotionally most of us have ever undertaken. If I knew two years ago what I know now, I would have probably ran in the other direction. I've made it through with God's strength and grace.

No one understands or believes what this is like until they have walked in our shoes. Quite frankly, I wouldn't wish it on anyone.

Have you contacted local senior services about having someone come in even for a few hours a week for you to get away or spent time relaxing? It makes such a difference.

Hugs and blessings for all that you do! Know that you are loved.
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Thank you everyone so much. Your answers are heart warming. To Doris my parents are divorced but best friends. They were divorced 30 years ago. My father has no will or no funds - nothing but a big heart of gold. When he wants to talk about it I will get pen and pad out and write it down like I do just about everything anymore. Dora my mother is ill too and going blind in her other eye. I am only one daughter and have three brothers.
@ Nancy yes I do pray and if it was not for my belief and faith I don't know how I would of made it past my own illnesses these past few years. I think your suggestion for Dad to make a tape is a great idea as I thought of just that the other day. We have tons of videos of him when he was well and I can hardly watch them now it is heartwrenching but I know we have so many photos and home videos and memories. I am not handling the stress very well with all of this and feel like I am not going to make it another day and then I have to refocus on just one day at a time. My respite care is needed and with the holidays and all coming up I don't think it will happen until the new year. It has to be. I am tired of everyone saying Dad dosen't want to go to respite but let them do what I do every single day and then come back to me and say Now I know what you mean. I have found out that people, family especially seem to shun at times like this as if it is not hard enough on me they seem to think maybe I have some tough skin with no inners. If they only knew how this has torn me inside and out that I can not even focus on anything too well anymore. It is hard to sit and watch. Sit and wait for the day to come and I know that might sound terrible but I am saying it how I feel it and then I feel awful for saying it. I ask Dear Lord to continue helping me here and my father since the family dynamics have changed from all of this. And then Dad does not know how much this is killing me to watch it. I never knew it would ever come to this here in my home watching Dad fade away like this. Each day I feel I am fading right along with him. I am near to tears as I write this and I think I need to start my journal again to get all these mixed emotions out. Thanks to all of you who took the time to respond here. I appreciate all of you so much. Blessings and hugs back to you.
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It's interesting to hear different people's views on talking about dying. I am fortunate in that both my mother and mother-in-law are happy to talk about their death and how they want to divide things up. Both very organised. When my husband first started with his dementia we got all his ducks in a row and I think I am prepared for the admin part of it, if not for the emotional heartache.
For my part, I have always talked openly about my death to my kids (aged in their 30's) and have discussed our wills and banking details etc. I even sent each one an email titled "In case I kick the bucket" and it listed EVERYTHING they would have to do in the event of my death. We keep it light-hearted and business-like. We are ALL going to die and I think getting your affairs in order long before hand is doing your kids a favour. (I have not touched on the emotional side of it because that's another whole story.)
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It is difficult when no planning has ever been done. My Mother's response is always "later, just do what you think is right".

When my Father died years ago without a will, we could not believe a search had to be done for other children and family friends had to appear in court to verify my parents were married (61 years). It was all so needless and very upsetting to my Mother.

Unfortunately, you can't force someone to face reality. I know in our case, Mother thinks she is going to be cured of old age and all that planning stuff is not necessary at this time. With what we went through when our Father died, you would think Mother would have gotten all her affairs in order.

I do think some of it has to do with your faith and the ability to accept the only way out of this old world is through death. It is all part of God's perfect plan.
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crystal1224, I think it all depends on the person as to whether you can talk to them about their final wishes. Some people like my mother-in-law, do not want to talk about dying. However when my mom and dad finally found out that mom was going to die from the cancer last year, we had no trouble talking about what she wanted. The difference was, my family and I are Christians and although the whole process of dying isn't wonderful to think of, the death part is no big deal. My mother-in-law on the other hand, is unsure where she's going to spend eternity, so she's scared (I would be too if I were her). Though my husband and I spend as much time as we can with her, telling her of the love of Christ and the assurance of heaven afterwards for His children. Well anyway, that's a whole different story... The point is, depending where your dad is mentally & spiritually will make the difference in talking to him. You said you have a church, so reach out to them with your concerns. That's what a church family is there for. It also might be helpful to start the conversation with dad, if you tell him what you have planned for your death. Tell him of the tape you have for your son, maybe that will segway into the subject of what he wants. I don't know, everyone is different. Sorry about your dad.
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I recently lost my dad and I can relate to your caring for your father. I can also relate to the personal circumstances you described. your mother is still with you and I presume your parents have been married for several years. all of the issues you have described are actually between your mother and father legally. I am presuming your mother is helping to take care of your dad. I can send you electronically the forms you will need to help at end of life, such as Power of Attorney, Advance directives, Do Not Resuscitate, his personal will to just fill in blanks depending on the state where your father resides, etc. you and your mother will need to know locations of social security cards, drivers license, credit cards in his name, medical insurance cards, including Medicare cards, etc.
the link below from the mayo clinic explains what a
living will and advance directive are and how to get the form.
http://www.mayoclinic.com/health/living-wills/HA00014
the hospice you are working with will have the forms to fill out or can tell
you where to obtain them in your state. please give your dad some time to become accustomed to needing to fill out these forms. if both your parents filled out the forms together, perhaps thy would be more willing to do so.
I understand your not being able to sleep; all of this can be overwhelming. if you can ask your pastor to pray with you about all of this, then turn everything over to The Lord and then let it go. Trust The Lord. if your dad refuses to acknowledge the end of his life, that is his right. your job at that point is to love your dad and create a joyful circumstance for his living. one more thing, ask him some questions about his life and record his answers. what a great remembrance for your family. I sincerely hope I have helped you and I wish you well. Dora
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@Jessie - my father never had a Will and does not want one. He has no life insurance or money either. I do not know why Daddy did not take care of this throughout his life. I made a Will when my son was a baby and have most of my things in order as I know what happens when you don't have these things taken care of. I do not know who to talk to about it either. I am being told as long as father is coherent, etc that he makes all the decisions even though I am his healthcare surrogate. My hands are tied. I could talk to him about his but have to do so when the time is right so I KNOW what he WANTS when the time comes. My son has all my instructions and I even made a tape recording for the day I leave this earth. I just hope when that day comes my house will be paid and my son will not have to go through the courts. All bills paid and my life insurance policy to take care of final expenses. I think I am the only one in the family that had did this. My mother has some things in order as well and it is a good idea like you said so me and my brothers aren't looking at each other on what to do. I still know it will probably be all on me and I have no money either. I wish Dad would of went ahead years ago when he talked about it and started paying on an arrangement. It is difficult for me all the not knowing and I have to blow it to the wind today since I did not sleep again last night and I am totally exhausted from all of this. I think it is time for me to go back to a counselor to help me with all I am going through since no one else seems to want to help or care to talk about it. I wrote a poem about Reality and maybe I will post it here but don't know where = maybe on my wall. Sorry to say my siblings can't handle talking about it and seem to run from it. Lord knows if my Mother ever gets this ill what will happen then.. for now I can only concentrate on one thing one day at a time. All your help is so appreciated. If anyone else wants to weight in on my situation please do so. I am very open to all suggestions and answers. Thank you once again my friend. Hugs.
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crystal, we were lucky to have a lawyer who is our friend. When I got here three years ago, they did not have anything in place. The will was outdated. The lawyer came over and we got everything handled. It took about an hour to set up the wills, the POAs, the DNR requests, the living wills. They were so helpful when it came time. It took another hour with a funeral home rep to make arrangements for the funeral. Of course, the funeral arrangements were very expensive. We saved money through purchasing early, though. It cost too much to die in this country! I am so glad we did set up the funeral arrangements. When my father died, we were able to stay with him for a while and then leave for home. The funeral home people took care of everything from that point. What a blessing they were. They even took care of notifying SS and transferring my father's SS to my mother. So helpful in a time when there was so much to do.

Your father may not be willing to participate in a living will or DNR request in his present state, but he may be willing to considers POAs, wills, and funeral arrangements. I hope so. It will take so much off of the family so they do not have to take care of the technicalities during a time of grief.
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Thank you Jessie Belle. I wish I had those things in order but my father will not talk of those either. He has no funds and no Will so it will most likely be up to me to figure what to do. We have in the past talked about it and he has gone back and forth on what he wants. I have thought of talking to someone at a Funeral Parlor for ages but am still uncertain what Dad wants. Like you said it is a hard discussion to have but one that must be had I think. I am hoping and have discussed with the advocate that next week his doctor tells him the truth as it is better coming from his doctor then from me or the nurses. At least that is what I was told. I know he knows but he is holding on to hope and I would never deprive him or anyone else that emotion. When I think of all that I have to do to prepare and the not knowing what do DO that is where my frustration and anxiety sets in. It has probably been in the back of my mind for so long that I feel it is time to "get the house in order" so to speak. Thank you so much for your thoughtful answer. I appreciate your words very much. And yes the spiritual guidance he is receiving. I have been reading passages from the Bible and we have the Chaplain come to visit as well. Thank God for Hospice and my church. Hugs to you xox
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crystal, I don't think there is an easy answer to your question. I do not talk to my parents about their death, because they are more aware of it coming than I am. I do listen to them when they talk. I used to make light of it by saying things like "You'll probably outlive me." Now I just listen.

One thing that helped me personally was making sure all the technical ducks were in a row so we wouldn't have to worry about them when the end comes. Having my father's advanced directives, will, and funeral arrangements made his passing much less traumatic. A friend who was dying told me a few years ago that he had to take care of the business of dying before he could start living the rest of his life. No truer words were spoken. Taking care of the technicalities gets much weight off everyone's shoulders.

I think the only thing we can do in the last months of people's lives is to be there for them. We can listen and care. We can see if they would like spiritual guidance with respect for their religion. We can keep them comfortable and let them know they are loved. I can't think of anything more than these things that a cg can do.
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Thank you Mishka. I appreciate your words you sent. I wanted to go in and edit my question but there is no way to do that here so I leave it as is. And I may have put it in the wrong category. Do you know if I should put it into a different category? Thank you again. Hugs.
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Crystal1224, Blessings to you and your father in your hour of need. I don't have any words that can comfort you as I am on the beginning of my care taking journey but my heart hurt when I read your post. You are in my prayers.
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