I just spent 10 days in Texas where my father was living with my brother and sis in law. He is suffering from Congestive Heart Failure (CHF), COPD, Diabetes and Liver Failure. He has advanced Edema and three falls and weakness put him into the hospital. I went to help find a facility to place him in, as my bro and sis in law felt they could no longer care for his medical needs at home. We found a very nice place for him, had him moved there from the hospital and, on the advice of the hospital, put him on Hospice. I stayed with him until he was comfortable and he was OK with me going home. It's been two weeks, and he has gotten better since the hospital visit. My brother and sister in law go to see him nearly every day. However, Hospice tells me he's hardly eating and he's drinking very little. His edema is getting worse, his legs are full of fluid and he has an arm that's blown up like a balloon and weeping. Hospice is treating him for advanced edema and for a blood clot in his arm. He say's he's in no pain (hospice is taking care of that too) and that he really likes where he is at and the care he is getting. He has a private room and bathroom with his own little patio. It really is a nice place.
My question is this... I have a vacation planned Nov 2nd through the 8th. I am going with my grown children and 10 yr old granddaughter (her first trip) to one of my favorite places to visit, Chicago's Field Museum of Natural History and the Shed Aquarium and Planetarium on the Lake Michigan Waterfront. We took our daughter there for the first time when she was about my granddaugher's age and I've been looking forward to us taking our only granddaughter there when she was old enough. We have been planning this trip for months and tickets are bought and paid for. I'm worried though, that dad might be at deaths door by that time. What if hospice tells me his death is imminent? Or if I get a call on the way to Chicago? I would absolutely hate not being able to share this trip with my Granddaughter and see her excitement at seeing these great places for the first time. .... I would like to think that dad would tell me to go to Chicago...that I've done what I can do, but I wonder if I could live with the guilt if he dies and I could have been there. It's got me torn up inside, thinking about this. I'd very much appreciate your thoughts...
I'd say go on the trip. It's only a week or so--you cannot live the rest of your life waiting for your dad to die and the "what if" surrounding that. You have done all you can to this point, he's in good hands. Spend this time with family and try to leave the worries behind (do make sure the rest of the family can reach you.)
I would check out travel insurance, just in case. I had traveled with a friend to Europe years ago and my friend's father died and she had to return home after only 3 days into our 10 day trip. She had gotten travel insurance, since her dad was sick when she left, and it paid off.
Once someone stops eating and drinking the expected time can be up to 3 weeks, maybe a bit more. It depends on the person. But it could be a lot shorter.
As to what you SHOULD do....only you can make that decision.
What do you think your Dad would want you to do?
What would you want others to do if you were in your Dads place? Would you want them to continue on with vacation or be at your side.?
Will you 1 year, 2 years from now regret that you were not at his side?
You can purchase trip insurance now so that if you do have to change plans it will not cost you the entire amount that it cost for the tickets and reservations.
As wonderful as the Shed, the Field Museum are they will be there for many years. Your Dad won't. (did not mean that to sound like a guilt trip)
If possible talk to your Dad about it and see what insight he has on this dilemma, even talk to your Granddaughter about it and see what she has to say. Out of the mouths of babes as they say....
And I recently had this discussion with a family member of mine. They are planning a trip for mid November and Hospice has given my husband 3 weeks. I asked what I should do...Tell her when she is on her trip that he passed or wait until she comes back? I would not want them to cut the trip short, I also do not want to "ruin" a vacation for the little ones...--I was told that trip insurance will be purchased and if my husband is still here when the date of the trip comes they will cancel the trip.
But all in all this is a personal decision
No one will fault you for whatever decision you make.
Good luck, this is a tough time.
By the way you just have to go to Garfield Park Conservatory, much nicer than Lincoln Park Conservatory and best of all it is FREE! And ya gotta have Deep Dish Pizza.
The weeping is what I worry about. That means the arm is just not able to get rid of that fluid that is making his arm look like something out of a Popeye cartoon according to my sister in law. It's this that has me worried the most...that and the fact that he's not eating. How long can he live by just eating a few bites here and there. He's even given up drinking coffee and hes always been a coffee addict.
It's not that we didn't care about each other as a family before that, it's that we all lived so split up around the Country and weren't much for "getting" together. We talked on the phone at holidays, sent cards back and forth and knew that we were all there for each other if and when the time ever came...and come it did, for both mom and dad. We three kids (Brother in Ohio, Brother in Texas and myself in NW Arkansas) have always been on the same page when it came to helping mom when she got sick and then helping dad.
However, when it comes to my non related family, it's not that they don't care,they just don't know my dad very well. It's only my niece, Dads only natural grandchild (my brother's daughter) who he's known for the last 3 years, and her two young children (his great grands) since he's lived with my brother and sis in law, who actually know and love him well.
That means that asking my step-daughter and husband and my precious granddaughter (the light of my life..the only baby I ever had and who've I helped raise from the day she was born) to give up their vacation that they've been so looking forward to (and who my son in law had to put in for weeks in advance) is not in the works. Which leaves me with the choice, Go with them to Chicago from NW Arkansas and hope that dad doesn't die in Texas while I'm gone so I can share this special trip with my one and only granddaughter, or stay home in case dad should die. There's just no way to visit dad and go to Chicago...they are too far in the opposite direction. I am totally torn and it hurts my heart. I guess I'm just going to have to see what the next couple of weeks bring...
Our daughter visited us for a couple of weeks from several states away. Her father enjoyed her visit. Several weeks after she left he went on hospice. She did not return then, nor did she come back for the memorial service. The entire family was perfectly OK with her decisions. I was really glad she had been here when her dad could most enjoy it.
You have recently visited your Dad and did him the great service of helping to find a suitable care center for him. To me, that is perhaps more important than being there the moment he dies. But that is a very personal decision.
I don't know where you live, but I can't imagine that you could simply "swing by" and visit your dad in Texas while you are on your way to Chicago. So I understand that this is an either/or decision.
I don't think there is a "right" answer to this question. Do what seems most appropriate to you ... and then DO NOT second-guess yourself. Make a decision and act accordingly.
It sounds as if your father has lymphedema, based on your description of the swelling. Not that everyone who has this will have the same outcome, but my aunt had this and was frustrated at trying to control it. It is difficult when the skin begins to weep from the retained fluid.
I mention this b/c it could affect his longevity. While my aunt did have treatment, including leg wraps which she said made her look like a hockey player with huge pads on their legs, the treatment wasn't able to control the edema. What we believe happened was that when her legs began weeping, bacteria from the leg wraps, or something ele, entered her system, she became septic, and died the same day she was admitted to the hospital.
I mention this not to frighten, but just to alert you to the possibility that there might be a sudden change in his status.
I am wondering though about the "treatment" of hospice for the edema. It's my understanding that someone in terminal stage wouldn't be given treatment other than palliative care. So perhaps I'm not understanding the whole situation. Do you know if the treatment is actually helping, and if it's hospice's goal to control the edema or just keep it from worsening?
I can only guess at the conflict you must feel. Besides the issue of the planned vacation, would you be taking your adult children and granddaughter to visit your father before he died? If so, perhaps you can add a "leg" to your journey and swing by to visit him before going on vacation. It might give you and those family members a sense of closure.
You could also ask yourself though, if he dies while you're on vacation, will you feel guilty? Can you handle this guilt? Many people could not. I couldn't.
Has there been any indication how long he'll live? Is there any consideration of removing him from hospice and returning him to a rehab or SNF?
If you think that your absence at a critical time might be more than you can handle, now or over time in the future, and/or that you're not available to support your family who are spending a lot of time with him, then I would try to be available. Perhaps you can get a refund on the tickets, or exchange them for future tickets.
I think there are 2 alternatives: spend time with him now and say your goodbyes now, then go on vacation, or reschedule the vacation. My personal feeling would that I'd reschedule. Vacations can be taken at any time, but being with someone's parent during his last days can't. Don't put yourself in a situation that you might regret.
I guess it boils down to which option is more important to you at this critical time in your father's life.
You cannot be planning life around his death. You need to live your life. How far will it be to dad if you go? A day trip? A couple of hours? Relieve your guilt. If he is not eating or drinking much he may very well be gone before the trip happens.