Dying parent, hours away. How do you manage guilt of not being being there

[Anonymous]

Anonymous wrote:So just found outmh mom is dying. She has months to live, maybe weeks. She lives 9 hours drive, 2 hour flight away. I can visit a lot, but with kids and work, how do I be there all the time? And I would like to be. We are incredibly close. I would love for her to come her, but she has a husband, pets, a life where she is. She is only 64.
How do people manage the distance when this stuff happens?

OP - if you are not able to always be there phsyically, SKYPE, FACETIME, etc... You can "be" there without having to lose your job or put yourself in a bad financial situation. I am going through the same thing. My father was diagnosed with multiple myeloma and does not have much time to live as well. I have a new born daughter, a new job, and I can't just go up there all the time. But I go as often as possible and I SKYPE...

Just a thought.

[Anonymous]

I'm so sorry Op. this happened with my dad. There was about a minth when we knew it was terminal. I had a 1 and 4 year old. I went to two nights each week. On my last trip, I walked out of his bedroom and knew I'd never see him again. It was the hardest thing ever. Unfortunately when we are adults we have other responsibilities that we just can't drop (even though we may want to). I wish DH would've just said go and I'll take care of everything, but he didn't. It's just not practical.
You just have to deal with it the best you can. Your mom knows you love her. Tell her as much as you can.
When my dad was dying, the last time I left was a Thursday. Two days later my mom said he'd be going any day. My sister gave me an incredible about guilt about if I was coming back. She's unmarried and lives in the same town.
I ultimately decided not to go back because I'd said my goodbye and to fly there to be there for his actual death, and then fly home and back again for the funeral didn't make sense. He didn't end up dying until Wednesday if then next week, and it was torture not to go back. My mom was very comforting during this time. She told me that my dad was a father and he had little kids at one point and he understood. It is still a big regret I have, but honestly it wouldn't have changed anything.
I'm so sorry you are going through this. It's so incredibly difficult.

[Anonymous]

Anonymous wrote:Op ~ know that your Mom would not want you to suffer any guilt. She would not want this for you. Remember this. Remind yourself of this often, now and later.

This is very true.

[Anonymous]

Anonymous wrote:Thanks everybody. This was all really helpful and I am SO sorry so many of you have gone through this.

I do absolutely plan to drive and fly there at least every couple of weeks. We are on our way now

I want to be there all the time, but feasibly, we can't; school aged, elementary children and a husband with a non flexible international travel schedule make it near impossible, even if I quit my job for this term.

I don't know. Maybe I can. I was devastated last night and not thinking clearly. We will know more Wednesday about how long she has. If it really is only a couple of weeks and not months, and she foregoes treatment, I can try to make it work.

The not knowing, the distance. Just terrible.

Thanks for all of the perspectives and heart.

It's a good decision that you're going now.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Op ~ know that your Mom would not want you to suffer any guilt. She would not want this for you. Remember this. Remind yourself of this often, now and later.

This is very true.

This. The last thing in the world that your mom would want is for you to create a financial hardship for yourself or neglect her grandkids or other aspects of your own life.

I say this as a mom, myself.

[Anonymous]

Anonymous wrote:Now is the time to call on friends. Tell them and ask for the help you need. Take a week off and take kids and spend this time with her. Play her favorite music, favorite movie, poem, whatever she loves. Devote this week to her and let her tell stories of her life to your children and record these stories.

Nothing gives closure but you will always have this time. God bless you and your mother.

Op don't overlook the fact that if your mom has a month to live that she is probably very sick and weak, and she might find it exhausting to have little kids running around. My dad loved my kids, but it was too much for him to have them there. he had my mom tell me this. I was a bit hurt, but it was about him, not me.

[Anonymous]

I agree it's better to be there when parents are alive and cognizant....rather than to be there at death/ funeral. I think it's great that you are going now. My grandfather passed a few weeks ago. When I heard he had days to live and knew he was still alert, I dropped everything and visited for a few hours-he was local. I didn't go to the funeral as I had an obligation with my children...some would have told me to skip.

I did the right thing though some people probably didn't understand. Do what's right for your family.

[Anonymous]

I spent a week with my mom when it was clear things were going south. She then started to improve and I went home. She died six days later of a blood clot. You never know when someone will go, just try to be with her as much as you can. My only regret is not talking to her on the phone for those six days. I didnt want to bother her, and I figured she would call me if she wanted to talk. She didn't :/ and I feel sad about that choice all the time. I was planning on visiting again in a week or so. She had my step dad with her and tons of phone calls from everyone else.

[Anonymous]

Anonymous wrote:You can't necessarily be there. My cousin did a round the clock vigil at her mother's bedside while she was dying of cancer. The moment when my cousin went the bathroom is when her mom expired.

Be there for people when they're alive. We do the best we can when we're dying. Do the best you can and forgive yourself.

I was so glad to see your post. I am a hospice nurse and I see this happen frequently. I often caution families not to be hurt or offended if this happens. Dying is a fiercely private event and some patients do not feel comfortable "letting go" until they are alone. I try to help families interpret this as the patient's "final gift" to them. A death vigil is not necessarily in anyone's best interest; every patient and family are different. Also remember that you need to keep up your stamina because there is going to be SO much to do after your mom passes away which is physically and emotionally exhausting. I am so sorry for what you're going through.

[Anonymous]

Anonymous wrote:Well, one way is to be there. Do you want your kids there when the time comes? Then model it.

Sorry if that sounds harsh. I guess I was "lucky" that my single mom died before I got married, so I didn't have to choose between kids and mom. I did cut back to 3/4 time for two years and used all the leave I could, but I realize that might not be possible for someone with different responsibilities.

I never regretted it, though.

I would not want my children to jeopardize their jobs, relationships or financial situations in order to be with me all the time in my last days/weeks/years. I wNt them to do what makes sense within their constraints. The quality of the time you spend together over your lives is what matters.

[Anonymous]

Just sympathy OP
I am so sorry

[Anonymous]

Anonymous wrote:

Anonymous wrote:You can't necessarily be there. My cousin did a round the clock vigil at her mother's bedside while she was dying of cancer. The moment when my cousin went the bathroom is when her mom expired.

Be there for people when they're alive. We do the best we can when we're dying. Do the best you can and forgive yourself.

I was so glad to see your post. I am a hospice nurse and I see this happen frequently. I often caution families not to be hurt or offended if this happens. Dying is a fiercely private event and some patients do not feel comfortable "letting go" until they are alone. I try to help families interpret this as the patient's "final gift" to them. A death vigil is not necessarily in anyone's best interest; every patient and family are different. Also remember that you need to keep up your stamina because there is going to be SO much to do after your mom passes away which is physically and emotionally exhausting. I am so sorry for what you're going through.

Can I just also say thanks to this poster- what you do is routine and your job and all that, but it means so much to so many.

Hospice and NICU nurses especially do so much more than they know!

[Anonymous]

My dad passed away several weeks ago. My husband and I don't have any children (yet), and it was a quieter period for my job, so I took a lot of sick leave and teleworked and was able to be there for most of his hospitalization and his passing. I guess that I was 'lucky' that it all worked out. But, if we would have had young kids, there's just absolutely no way that I could have been there for that constant vigil - the hospital just plain didn't allow little ones in the ICU units where my dad was. As it was, we were scrambling to arrange pet care while I was away - that was a LOT of stress, and pets can be left alone much longer than kiddos, obviously.

I guess that I'm just trying to give a realist viewpoint. Im glad that I was able to be there with my dad at the very end, but I also know that (for a variety of reasons) neither my mom or my dad were able to be there 24/7 at the end for their own parents, and my parents were/are devoted children to their parents (my grandparents).

I would recommend doing the best that you can, but realize that you just can't do everything. Being a caregiver is tough - be kind to yourself.

[Anonymous]

Anonymous wrote:The rest of your life will always be there. Your mom won't. You have to decide what is more important to you and focus on that.

I'd personally take off work, take the kids, and head to mom's house. I'd spend every second of every day with her and I'd make sure my kids did too. DH can travel as he needs to so he can keep money coming in.

Not OP, but just curious...how much school would you be ok with the kids missing? I'd be ok with maybe a week or two, but not sure how I'd feel about longer than that.

[Anonymous]

I had a similar experience. Dad was in a restricted setting at the hospital and couldn't have children visit. I wish I'd gone to see him more often. But I was really stunned by the diagnosis and was stuck processing that. Not really thinking about spending time. We talked on the phone and Facetimed a bit, but that was exhausting for him.