Posting under an alter, although I think anyone who knows me IRL already knows this.
About 3 years ago my dad was diagnosed with prostate cancer related to Agent Orange exposure. It was pretty advanced (is my understanding) and he was given 8-12 years. He could have bettered his odds with various procedures he decided were not going to jive with his idea of "quality of life". At 65 he figured 8-12 on his terms was fine. He did chemo, radition, all that. He had some complications but no more than the usual cancer bumps in the road.
Fast forward to this October and (longggg story short) they found Glioblastoma Multiforme brain cancer purely by accident. My dad survived surgery, has no impariments (true story- the doctors can't believe it), survived post-op penumina (sp?) and blood clots. He was back at work in 2 weeks. There were a couple of ambulance rides and Thanksgiving in the ER but hey... and let's not talk about how I nearly puked reminding my mom when they started dad on Hebarin for the clots (and he had a bleed) that we needed to make sure the nurses had the DNR... it's one thing to hand over a DNR when you're just going for an ingrown toenail or something, totally another when you're like "NO, YOU NEED TO HAVE THIS."
We went into it knowing it's 100% terminal, but we had hoped given how early it was found, it might be more like 18-24 months. Chemo, radiation, all that.
The news from last week is devestating. It's back, it's growing and it's maybe 9-12 months. Probably more like 6. They've started the whole Hospice ball rolling.
So, CoTH peeps, how do I deal with this? I live 2000 miles away. My aunt and my sister live a few hours from my parents, but my Mom and Dad are really on their own. No other family or really close friends locally. They're obviously getting things together. I mean, there's a whole morbid practical side to this dying business.
My Dad is mostly concerned with my mom. In quiet moments he's told me how he's okay with dying- he accepted the idea of his death years ago in Vietnam. He's not okay with leaving my mom. He is really not okay with this, and the thought of leaving Mom alone really tears him to pieces.
In my family my role (ask anyone) is the stoic strong one. The last one to cry, the one that never freaks out, the one who most like my dad (actually) He told me, "I really need you to promise to look after your mom when I'm gone." and I promised I would, and he was so relieved. I guess my question is how the hell do I do that from 2,000 miles away? How do I support my family through this whole shitty process? How do you make the most of the time left?
First thing, hugs for everything you are going through.
Second, from the strong on in my family, make sure you take care of yourself and give yourself time to grieve.
Third, talk to your mom. Taking care of her can mean many things.
1-talk to your parents and see what they need and want
2-if you can take time off work/school to spend time with them and they want that....do it
3-if possible talk to your dad and let him know what he has meant to you
4-try not to expect him being expressive in return....he's probably scared
5- TAKE CARE OF YOU.......going through this is so stressful and draining...be sure you have peeps that you can lean on & who will be there for you
6- try to keep in mind people who have not experienced this do not understand....and after the funeral many think "you" should be over it rather quickly....again have peeps who get it
You don't always have to be the strong one......I know it feels like it from what you posted--that is a terribly difficult burden to carry with grave consequences.
You promised your dad to take care of your mom.....get more details on what that means......(thats a heavy load).....
What I have suggested may not be right for you or your family.....just trying to help.... do what YOU need to do to be ok and not have regrets.....remember your human and it's not realistic to carry everything.
My first advice is to talk with one of the social workers from hospice. Even though it'll likely be a phone call vs an in-person, they are there for you as well as your father. Any of the staff will be trained and have valuable advice for helping your mom...and yourself at the same time.
Even as the strong one, it's ok (normal even!) to break down, to feel inadequate, to be afraid. What you are going through is utterly horrific and you need to work through ALL of the emotions that are going to hit you over the next few months (years).
I hope you are able to travel to them and spend as much time as possible before, during, and after. Sometimes helping with the day-in and day-out routines is what people feel the connection to the upcoming loss. Not everyone is able to travel so in that case, I'd definitely stay in regular contact---not only with your folks, but the hospice team also. They will be able to offer updates and insights that come from experienced eyes.
I was a trained hospice volunteer for several years. I did routine bedside support as well as urgent crisis vigilling/relief work and those experiences are some of my most treasured to this day. I wish you peace and comfort and if you ever need someone just to listen, pm me and I'm happy to send you contact info.
Flip a coin. It's not what side lands that matters, but what side you were hoping for when the coin was still in the air.
Help your father get his affairs in order ASAP. If possible, you and your parents should meet with an attorney this week to review his will. Make sure you have a copy of the will. Have your father make a master list of all of his accounts, all of his passwords (including email) and all of the info they use for bill paying. If possible, have all of the bills set up so you can pay them online. You don't want your mother in a house without electricity because no one paid the bill. Have at least one pay on death bank account or joint account, with money in it, to use for paying bills while the estate is settled. Find out what your father wants for funeral or memorial arrangements. Will your mother be able to deal with all of this, or will you need to step in? Make sure you talk with the attorney before doing anything that might have tax consequences. For example, it usually makes sense for your parents' home to be in both of their names, with rights of survivorship. If your father gave you the house, it might trigger unnecessary taxes.
Get a book on estate planning and read it now. Your father may get great comfort from knowing his affairs are in order. Use hospice as a resource. They are usually excellent.
I'm so sorry. I was on the opposite coast when my dad was dying of colon cancer. It was very hard. Fortunately, my other siblings were nearby. I agree with the previous posts. Make sure you talk to your dad and tell him how much he means to you. And talk to your mom and find out what she needs/expects from you. That way you can make plans as to how much you are going to be able to do. Your mom may surprise you. Mine has handled widowhood very well.
You have my deepest sympathy. I lost my mother at 51 and my father at 80, both to cancer.
In the remaining time, try to spend as much time "with" your father as you can. If you can't be there in person, make lots of phone calls, emails, and so on. It will help both of you to talk about memories, both of things you did together, and of his life before you were around.
Try to flesh out what "taking care of your mother" means. Also bear in mind that you mother and your father may have different ideas of what "taking care of" means.
DO talk to the hospice nurses or social workers. They are generally better than the dotors at helping you to understand what to expect as the disease progresses, and what your father needs most. If there is not yet a palliative care doctor involved, try to get one.
I can also recommend a couple of books
"A Death of Ones Own" by Gerda Lerner (who died herself a month ago)
"On Death and Dying" by Elizabeth Kubler-Ross
chief feeder and mucker for Music, Spy, Belle and Tiara. Someone else is now feeding and mucking for Chief and Brain (both foxhunting now).
I am so sorry to hear this. If you can take time from work, go and see your dad now! This is when you can talk to him and laugh with him and plan with him. When he is in endstage, none of this may be possible, so do it for him now.
Talk to your mom and figure out what she needs from you over the next few months.
Talk to your sibs and see who can be with your parents when. It would be really nice if a family member can be there for your mom at all times. (This may not be possible but it would be nice.)
Hospice can be a wonderful last gift to a loved one. I was blest in that when my mom was dying my SIL moved into the house to care for her. SIL had been a hospice worker for years. This gave great comfort to all of us.
I will keep you in my prayers.
I'm so very sorry. I lost my brother to lung cancer in 2007, and he was in Michigan and I was in California. In the 2 1/2 years between his diagnosis and his passing, I traveled to be with him and my sister (who, thankfully, lived in the same town as him) as frequently as I could. The hospice personnel who cared for him the last 6 months of his life were all wonderful people and offered excellent support for us all. I know your role is to be the strong one in the family, but tap into as many resources as you can to provide support for yourself during this journey. Peace and blessings to you and your family.
I'm so sorry you and your family are having to go through this. My Grandmother recently passed away and I spent a week by her side when Hospice came in. I stayed with my mother for a few weeks after that so she wouldn't have to be alone. My Grandmother lived in the condo across the hall from my mom, so it was really hard for her.
My sister was helpful too but she lived farther away. You can help your mom by calling her everyday, and several times a day at first. She will be lonely and grief stricken. Help her now by making sure your Dad's arrangements are in order and what his wishes are after he passes. Once you know those for sure, you can help out with that (like deciding which funeral home, what the obit will say, which newspapers it will go it, etc). So much planning goes into a funeral and your mom will be overwhelmed. Be prepared to step up and help out with anything. You are far away but you can make phone calls, send emails, etc. Anything you can take off her plate will help. A neighbor bought my mom a new watch battery when hers died and even though it was a small thing, it was a huge help to her.
Try and talk with your siblings about visiting your mom after your Dad passes. Friends and neighbors help out in the weeks after the passing, but then it drops off drastically. Maybe you can go visit a week and then a few weeks later, your sibling can. Send her cards, small care packages, etc. Those small things really lift someone's spirits.
I'm so sorry for what you are going through, and what is coming.
You got some really good advice. Hospice is wonderful - I'm sure you can take advantage of their grief counceling even if you aren't using the same chapter as your parents. Don't be afraid to grieve, and take as long as it takes.
I am able to go visit, and will probably be flying up week after next. Last time I stayed 3 weeks.
Everything was put into "order" when the original diganosis came through in October. It was iffy on if Dad would survive the surgery at all and if he did who he'd be when he woke up. Everything on that front was buttoned up some months ago. There are still the details of funeral arrangements (), hospice, the really horrible stuff that is emotional no matter how you hack it...
My aunt (my father's oldest sister) is actually a retired (last year after 52 years) OR/Crtical care nurse and lives a few states over. She will be coming back and forth to help mom.
I feel so powerless. I'm not THERE. I'm so glad my aunt is there right now so my parents aren't going through this personal hell just the two of them.
The other thing I have a terrible problem with is I have a really, really hard time showing emotion. My dad is the same way. I feel like I have to shore up my iron walls and really hold it together, and everyone else is going to pieces around me and I might be misty and sniffly but damn if I'm not fighting that urge to cry and panic. I'll go weep quietly somewhere in private later.
I've got to ask... is that wrong? Does that hurt people? I just feel like I can't deal with my own feelings in the moment. I just have to help everyone else get through that moment, focus, do what's got to get done, then I can go crawl under my blankets for a good private cry. But I don't want to hurt anyone. For people who have been through this... do people like me (who fight their emotions) make things harder?
What you are feeling being stoic is pretty normal. I lost my dad in 95 to lung cancer. I also was a hospice home sitter for 2 yrs, and learned thru that, that one of the best things you can do for your dad is talk to him. Don't be afraid to talk about dying/death, and what your mom may need for help. Many dying patients really want to talk about dying/planning, but feel like they can't because it upsets people. So be honest and allow him to tell you things. Find out if mom knows how to balance a checkbook, pay bills, etc. Have dad teach her if she doesn't know how. Find out if you have a good handyman, electrician, plumber that you trust, so if she has a problem with a backed up toilet or something after he's gone, she knows who to call.
That bothered my mom the most. She couldn't find who to call to climb up on really high ladders to change out some light bulbs. (They make long stick things with various attachments to do it, by the way).
If she lives where winters are harsh, make sure she knows how to get ready for winter, get propane tanks fills/oil burners filled if needed, who plows driveways, etc. It will help if you can have your dad help with lists of name/ph #'s for that kind of stuff. It'll also help ease his mind, knowing she has info she needs. Day to day stuff is most difficult for a woman who relied on her husband to take care of many household things.
Hospice is wonderful and can really help you and your family with how to communicate about difficult issues, and how to prepare your mom for after. They even teach people how to balance checkbooks, etc.
I'm so sorry you are going through this. There are some really good books your family might find valuable. PM me if you want the names.
My dad died suddenly, so not quite the same as what you are going through, but I was the strong one. I somehow held it together and got mom and the family through the planning of the funeral, the funeral itself and the following time.
However, I personally suffered. I started to deal with stress and anxiety issues.
You may want to consider some grief councelling before and after the fact to help you be able to deal with your grief and not keep it bottled up.
It is great to be strong, but we all need the time to let it all out.
I am so sorry to read this! I guess in a nutshell I would second(fifth, sixth, tenth,whatever) the importance of getting good support for yourself, in the form of good friends, family, therapist, priest, dogs, horses, whatever(VERY IMPORTANT!!!) , and who ever wrote that some people get it, and others don't, is so, so right! You will find there are many who have either been there, or who just really understand the conflicts, and others who just don't. People do their best, but stick close to the ones that are kind,loving, supportive and don't tellyou are doingit wrong!!!!
I think my mantra would be "no regrets", cuz when its all said and done, it really is all said and done and we don't get do overs. Absolutely talk with your dadwhile you can about dying, death, and all that, if he is willing (some people are really wanting to talk about and some aren't). It might make him feel better to know that he CAN talk about any concerns with you (and it is very hard, which is why self care is important). In many cases its comforting to us too! A friend of mine died recently, much too young, of brain cancer, and she was adamant that she was not afraid, had had a "death experience"on the operating table and was totally comforted. She was actually a very comforting force to those who loved her! But even if he does NOT want to talk about that, its wonderful while you can to talk about memories, share jokes, all that!
I am also far away from my mom, and I am definitely thinking of going back to be with her (she is 80). I was there for six months last year. It is indeed in the daily stuff, going through things she has, having funny discussions about old memories, helping her shower (she broke her pelvis in four places falling off a horse!!!) that really golden moments happen. A good friend of mine just got back from ten months in NY, with her father who died, and again, no regrets. her husband was incredibly supportive (as mine has been). Nothing like actually being there, as hard as it is.
Hospice is generally wonderful (had one very bad experience in CO). They are supportive and can walk you through the process.
And I would not, not, not second guess how you handle grief! However you do it - stoically, emotionally, whatever, I would say you are fine! We ALL have our ways of supportiing ourselves, and whatever works, works! Just as long as you are gentle with yourself. There is a wonderful book, called the Grief Recovery Handbook, which is a great resource (maybe not for right now, but in general)
Anyway, you truly are on a sacred journey with your dad! Not a fun one, but one that can be profound.
As one more thing I have learned, grieving is much more about the heart than the head. The head is important ,but what it says, "they aren't suffering, Ican have another child, I can get another pet, etc." is not usually the core element of our loss - our heart hurts - we miss them, or we did not want this to happen! its scary! sad! Whatever! I think as long as our head can support the heart, we are generally better off!!