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lostgagurl Asked February 2016

How do I find peace in all of this?

My dad is dying and it could be soon he is in hospice. Last October when we found out he had stage 4 kidney cancer we immediately went to Florida and begged him to come home with me where I could take care of him he said no I live in Oklahoma I don't have the money to go back to Florida now that the end is near if I had the funds believe me I would be there I have made my self sick over this I don't know how to reconcile this I call him everyday and let him know we love him and today the charge nurse called and said perhaps I could call the VA so somebody can be with him so he feels supported and not alone I can't even begin to say how it devestated me to hear her say that I wanted to scream I tried to get him to come home with me Don't you think I want to be there!! I guess I needed to tell someone who might know what Iam going thru Thanks for letting me vent

Dustien Feb 2016
Thanks for the update and Sorry for your loss. You can rest assured he's at peace now, and you need to be too. You reached out and did all you could and that's all you can do. His knowing you were coming just might have been what he needed to "let go" and start his soul's next journey, whatever that may be. Sadly, none of us get out of here alive..some slip away easier then others after a long life lived well. That's all any one of us can wish for.

AnnyWh0 Feb 2016
Is there any Air Force bases near you and your dad? Is there anyway the base would let you hop a space available flight to see him? Contact the public affairs office of the base - perhaps because he is in a VA facility they may be able to stretch the rules. I can't guarantee it, still it's worth a try. Good luck!

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kcs1234 Feb 2016
So sorry, I didn't read through all the posts. I am so sorry for your loss.

kcs1234 Feb 2016
I'm so sorry you are going through this. There is no easy answer. I had to actually kidnap my mom, so to speak, to get her to move to AZ from IL with me. She doesn't remember the trip and I am thankful for that. I hired to caregivers to help me drive her from IL to AZ. 23 hour drive straight. We had to sedate her a couple of times when she realized she was not going back the nursing home I had to put her in because of no other choices.

There is no peace really. Seeing your loved ones deteriorate and when they are stubborn, like mom and your family member is very difficult.

CaredForParents Feb 2016
Thank you. My thoughts really were with you today. I imagine knowing you were on the way brought him comfort, and I hope it brings you similar comfort and peace to know you had done all you reasonably could, including asking a bunch of strangers. Caring strangers. But just the same. You're clearly resourceful and loving to your dad and to all of us. Take care. Hugs.

lostgagurl Feb 2016
I wasn't sure how to update but I wanted to Thank Everyone for their advice and kind words. My Dad passed away Sunday nite it was a shock to me and the nurses I was able to talk to him Sunday during the day and told him I was coming you see I was able to get a hardship flight that was on Monday morning Iam going to be ok because I knew he knew I was coming to be with him but the LORD took him on home so now we plan the funeral.Iam just so glad I was able to tell him how much I loved him and I was going to be there.

KatManZu Feb 2016
No one can predict when death will come. Hospice told me it usually takes 2 weeks. I made my plans to visit my dying Dad in about a week. My Dad died 3 days after entering hospice when I was on a plane for work, to somewhere else. In retrospect, I told myself I HAD to work, but now I realize I didn't want to face his death. I regret not having the courage to face my Dad's reality. Hospice called me and said he was scared and lonely. Made me feel even worse. My brother and mother were there with him, and they were horrified by seeing him gasping for air like a fish out of water. They ran out of his room and cried in the parking lot, got the call later that night that he had passed away. Mom said she didn't believe he knew they were there with him.
Not everyone goes peacefully, and not everyone makes peace with the death of their loved one. For me, I regret not being there. It's been 13 years and I still regret it, a lot. He was cremated before I could see his body, that might be part of why I don't feel closure. I had seen him critically ill, then he was gone.
One of my brothers that wasn't able to make it to Florida before Dad passed said he was sorry he couldn't make it, but that he would remember Dad as he was in his life. My other brother seemed unaltered by the experience.
You might do everything in your power to get there, and you may be horrified, or you may be eternally grateful that you were there. If not that you were there for him, but for yourself.

TheHatedOne Feb 2016
I´m sorry to hear about your ordeal, try out the helpful suggestions if you can! We can´t be everywhere at once and can only do our best! I brought my demented father to live with us in Portugal, when he really wanted to go to Montreal where he had lived most of his life...there he would have had to be institutionalized, and would have been alone, but that´s where his former lover lives. We (his kids) figured he´d be better off with his family, but he had a bad stroke (the second one) the day after our arrival to Portugal; he´s now bedridden & we will be sending him to rehab to try and get the physical part working again...his mind is shot. He is also extremely mean to me. Even though I feel sorry to see him like this, I don´t feel guilt...we are trying to keep him as confy as possible, but can´t work miracles...
All the best. Hope

Gigi11 Feb 2016
Perhaps you could take refuge in an old favorite: "God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference."

CaredForParents Feb 2016
To lostgagurl, sorry for what you're going through. Feel at peace it's not his fault for not wanting to move, nor your fault for living in OK. Do what you can and be creative to get there if you can. An airline may really help if you ask. Also, Spirit and Frontier can be ridiculously cheap, especially last minute. Gas is at a low. Maybe drive to an airport you usually wouldn't think of. My bro drove from KS to FL many times. If you just can't make it though, maybe a volunteer on his end can set up a phone call or video for you? Some SFAs and VAs have volunteer visitors. Try a church in his area, sven uf he disnt go to it. Meals on Wheels or Catholic Charities are also often connected with volunteers looking to help out. Care dot com is another option. Look in his area and you can maybe/probably find someone just to sit with him/help make a phone call to you for a minimal cost vs. getting there. Thoughts are with you and your dad and family.

CaredForParents Feb 2016
To 126Cher's post, yes "Medigap" insurances must also be changed if permanently moving out of state (vs. say a vacation). For example Blue Cross of Illinois is entirely different than Blue Cross of California. It's because Medicare is state vs. federally administered. Plan costs and coverage can really vary by state. We did it without too much fuss (two phone calls and some online comparing policies). We got something similar, but in our case at a bit higher price. I forget the time window you have, but your policy holder can tell you (that was the first phone call). A change of residency is an exception to the once/year open enrollment period, so don't worry about trying to move within that window.

GardenArtist Feb 2016
I'll try to offer a bit of a different viewpoint.

He probably knows he's dying, doesn't want to change domiciles, and wants to be comforted by what he's used to and comfortable with. So getting him to move is likely out of the question. My father feels the same way - he wants to stay in his home, regardless of what happens.

I don't recall the specific programs but I do recall seeing signs up at our local VA about programs to help a veteran remain at home. As others suggest, contact them, find out what help they can offer and implement it.

I also vaguely recall something about visiting teams but don't have the specifics, and any information is probably in my large pile of VA filing that needs to be addressed.

Service organizations can help as well; they may even have rotating visiting teams.

I like Partsmom's suggestions, especially about people who visit. WindyRidge, one of our posters here, visits hospice patients weekly.

I have some recollection about mercy flights; perhaps you could get assistance to fly back, especially toward the end. The VA might have information on this as well.

In the meantime, I would call regularly, send cards, and photos, and if you think he'll use it, arrange for Skype service so that you can communicate face to face. I've just learned of another service, apparently free, called TANGO. One of my relatives uses it to communicate with her family.

Check into the Ronald McDonald home arrangements; I believe that it used to provide reasonable or free housing for cancer patients in treatment at out-of-town facilities, but I haven't read recently on the extent of its scope.

Gilda's Club in his area of Florida may also have suggestions about other voluntary respite providers. It's a wonderful resource for anyone battling cancer.

I fully understand your concern and distress; I would want to be with any of my family in a time like this. But it's also important to respect your father's wishes and recognize that moving would probably be too traumatic for him at this stage of his life.

Treat it as such, say what you want to say to him about how much he means to you, how he's influenced your life, and make the best of this time by finding a way to accept, and know that you're accommodating, his wishes.

partsmom Feb 2016
The idea of photographs is a good one--especially old family photos if you have any. I had an uncle in the hospital dying of heart disease, and I went back through my mom's old photo albums and made him an album of copies of pictures of the family when he was growing up and his daughter told me that he really enjoyed it and looked at it often.
Also check with the hospice and the local visiting nurse association about volunteers that will visit hospice patients--usually retired people who are screened and trained. An older friend of mine did this for several years. People who can talk about "old times" are good company for him; get him to tell stories of his life and times to someone with a recorder.
He probably is better off in a place he feels is familiar and comfortable--older folks do not transplant well.

sophe509 Feb 2016
Lostagurl~ Losing a beloved parent is so hard. One: his cancer and that he is going to pass away is NOT your fault. While in a sound mind he chose to stay where he was, so that you are not physically present is also NOT your fault. Making yourself sick with anxiety is not helping anybody. Talk to your own doctor and pastor, too. Great advice to contact the VA, get hospice going if not already, check with the local faith group he belongs to if he did to see about visitors. Somebody (you?) might want to ask him about his affairs being in order...a will, a durable power of attorney, a POLST (polst.org), and funeral homes sometimes offer nice brochures to help with planning his service. On a more simple note, sometimes sending photographs or a card might brighten his day. Please don't beat yourself up...OK?

JohnnyJ Feb 2016
If he is in hospice already, find a way to talk with the hospice rep about your concerns. They could have a chaplain to be there and counsel your father while he is conscious and aware. The church support suggestion was a good one. Perhaps there is a branch near there that could have a pastor visit or a caring congregation member. If he has any friends still alive, they could visit as well. I would also be saying prayers for his health and guidance for him and also for myself, asking for the best ideas and words to use at this difficult time. That you are phoning and talking with him is important for you both. All that is missing is the physical touch. You are doing well in a difficult time.

hospicechaplain Feb 2016
lostgagurl- Your dad did not make it easy for you when he insisted on staying in Florida, but his time when "everything" is slipping away from him is not a time when he wants to give up whatever is "home" to him. You mention that he "soon could be in hospice. I suspect he is eligible for hospice already. I urge you to call for a hospice evaluation. A good hospice will help you with your dilemma and will give him a stronger support system on-site. They can also help with the VA connection. You are likely to wish that you had called hospice sooner.

ferris1 Feb 2016
lostgagurl - Contact the airlines and ask for a hardship flight. You will have to speak with their customer relations who deal in medical issues. I am sure they can get you home before your father dies. My best wishes to you (from the wife an ex-pilot of an airline who did this regularly).

126Cher Feb 2016
Pam, I understand that Medicaid stops over state lines but I don't understand about private insurance stopping over state lines. Are you talking about Medigap insurance? I hope not!!! If you are not talking about Medigap what other private insurance are we speaking? Thanks in advance.

sscoale Feb 2016
Many churches have "discretionary funds" available for the minister to use as he or she feels necessary. Tell your minister or rabbi or even your close friends about your dilemma. I'd even suggest that you borrow money (and sign a loan note) so you can see your dad while he's alive. You won't regret it and it will be money well spent. Check with a travel agent or airline rep to see if there are special fares for situations such as yours. Be prepared to show documents that prove your dad is in hospice care and is terminal.

Dustien Feb 2016
Contact the VA in the area and ask if someone couldn't "step into" your role, and in exchange, call your local VA and ask if there's anyone on their watch there locally who might need a friend in their hour of need. If I had the programming knowledge, I'd start a parent swap website. You certainly are not alone in this since children are spread throughout the country, heck, the world for that matter there are to many seniors everywhere either alone, or putting all the pressure on one child while the rest of the siblings are out of state and can't be of help.

There's certainly a big need here. Someone should take this idea to the Shark Tank! You can start the ball rolling for your Dad at least. Visit your local VA, explain the situation you're in, ask if you can help and in exchange maybe someone there can contact the VA where your dad is on your behalf and get someone there to help your dad. What do you have to lose? Helping someone here who needs you will certainly make you feel batter and visa versa for the person who helps your dad. You could even swap phone numbers with your dad's "surrogate" so perhaps you two could talk about your dad, tell him some of your better stories so he/she will know something about them. If you end up helping someone here, you could contact their children to find out more about their dad/mom. What a wonderful idea this would be to get going around the world.... I can make websites, but can't do the script programming that would allow folks to sign up themselves and their parents for the swap. Hey, Aging Care...this may very well be a wonderful thing you could get this started????? I'll be the first to sign up. My brother and sister-in-law in Texas could use a stand in for me to watch my dad once in awhile so they can take a date night, and I, in turn can help out someone here where I live.

In the meantime, though, lostgaggurl, there is the the VA to get the ball rolling...I'd give your local chapter a visit or a call today. Sounds like time is of the essence for you and your father. At least you'll be doing something pro active! Best to you!

pamstegma Feb 2016
Definitely contact the VA or your nearest VFW or American Legion. The will send someone to visit him. He made the right choice, because crossing state lines messes up the insurance coverage. Medicaid stops. Private insurance stops. He is in the right place.

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