Father is dying....

[hosswhispra]

Hi Nixee,

 

It does change everything in life in a million ways.

 

I know...the grief, fear, anxiety...being scared-I can relate so much. These feelings are normal. Five years ago, I was 30 when my dad died. After he died, I thought I would have time to catch my breath. I hoped that I would be "settled" socially before this happened to my mom. I really wanted to have a husband and children before having this happen.

 

The more I fight it, the more tired I get. I am in the process of resigning myself to what life really is. I am like a feather that fell into a flowing body of water. I am just going with the flow now. Many of the plans I envisioned after my father died have been put on hold. This is teaching me not to fight life and to just go with the flow.

[Nixee]

The age thing is definitely hard.... like you, I've had the feeling of wanting to be "settled"... if not married, then in a secure relationship.... or heading towards kids... soon. I've been working towards my dream career for some time now... and suddenly... all the cards are thrown up in the air again.

 

What you said is exactly right - I'm a feather in the air... on a river. Yet I can't help the urge that I keep having to 'get my life in order'. Maybe that comes with the age? I don't know.... All of this stuff is happening to me externally - beyond my control. Yet INTERNALLY - I am ready. I am ready to be settled - have a career, have my own family, a healthy relationship, etc. Factors beyond my control just.... seem to prevent it.

 

Thank you for sharing your story and your thoughts. I hope I can and will learn to go with the flow. If some doors are closing for me now.... or even being put on hold... I hope new doors will open in their time.

[_Asti_]

*hugs*

Hang in there.

Since I posted, my Mother did pass away. Everything from here on out is different. Nothing will ever be the same. Its like "Life before Mom" and "Life after Mom"

 

To this day, I still don't think it has happened. I still feel like I'm going to go home, and she'll be there. Give yourself time. I took over a month off of work and glad I did. She passed just before Christmas, so it was such a busy time with events, and family and friends, that I wasn't really alone till well into the New Year. I've submerged myself into grief books to carry me through, to make sense of it [if you really can...] and sadly, life moves on and goes on, whether you want to or not.

 

It is probably one of the most heartbreaking and devastating things you will go through. I still shut my eyes and see her face on her last few days alive. My whole life is now different, I am a different person.

 

Hang in there. You will get through it. But don't be afraid to feel what you are feeling. Its all part of the process.

[Nixee]

Thank you Asti.... and *hugs* I'm so very sorry for your loss.....

 

Right now.. my head is just spinning with thoughts... the pain of course... the grief.. pre-grief, if that makes sense?

 

And the practical stuff - I can go on FMLA leave from my work for 12 weeks... yet... what then? Do I have to then KNOW that my dad will be dead within 12 weeks? Ugh... how awful! I have to withdraw from school... deal with financial aid.... I live 3000 miles away... I have to get home, plan my stay... figure out everything... my whole world for the next few weeks just... changes.

 

It is hard to thing about "after"... Returning to "normal" What? How? I can't imagine. There is no then... only now.

[just M.E.]

Nixee -

 

I just lost my Mother Jan 8 to metastasized colon cancer. She had an consult with a surgeon the third week in Oct of '09 and she went straight into the hospital. They were able remove the tumor but the cancer had spread and since she was very weak and malnourished from the colon tumor, she could never have any treatment. As you can see the time line was very quick.

 

Hospice is wonderful and we were able to have Mom at home. Do I have any advice? Not really, but the best role you can have is to be your father's advocate. Make sure you understand and support his wishes and his well being. When a parent has no options for treatment, we have to understand that they may choose to have their last days be better days. It means accepting their death, but there is that lurking reality that the death is inevitable and they have the right to choose those to days to be days they felt a good as possible.

 

I prayed that Mom were to have to die, that selfishly could she be here with us with clarity and then have her passing be quick. Although she was too frail for normal life, she was able to walk with a walker and assistance up to 5 days before her death, and she only had to be on morphine for 28 hrs, although she would have House jealous for the amount of Vicodine she was given in the last month of her life.

 

I was there holding Mom's hand and telling her I loved her at the end. Don't afraid to be there, this is the most unselfish thing you will do. Give your Dad your words of love and assurance that you will be with him. No matter what you say or do, I believe it is impossible to be prepared, we all find denial in this. We are all greedy, we want one more day, one more week, one more month.

 

When my SIL passed away, I could only visit her for a couple of days and had to go back to work. When I was getting ready to leave, she looked at me and said "I won't see you again" and I answered "Yes, you will. You're just getting there first".

 

Remember, he is only getting there first. {{{{HUGS}}}}

[LovelySoul]

I am so sorry what you are going through. I can quite imagine what it feels like.. My heart goes out to you and your family.

[Nixee]

Thank you Just M.E. and LovelySoul....

 

I have been sent some links by my mother now on hospice care, and specifically for brain cancer patients, kind of preparing us for what to expect. So many stories you read echo what you said Just M.E. ... that you shouldn't be afraid (although... I don't know yet how I can't be? at least a little...) ... That in the end the patient should hopefully be peaceful, and letting go natural.

 

I think I can already recognize that my dad is more accepting of things than anyone else around him... probably because he has to be.

[dscott]

I can relate to so many of your stories...

 

My Dad is dying of prostate cancer. He is 63. He is on hospice care and is at home. The cancer has spread to his bones and the last few years have been a roller coaster of emotions... hospital visits... ups and downs.

 

The latest situation happened this past week. I went home to be with Dad after he took a turn for the worse. It happened last Sunday. He was fine Sunday night, then the next day, he couldn't get out of bed and was slurring his words and breathing heavily, in a lot of pain etc. etc. My Mom was keeping us (my 4 siblings and I) informed by phone. (None of us live nearby. my Sister and I are the closest - 5 hours away.) Then, on Tuesday, Mom called and said we may want to think about coming home. She thought Dad was not doing well, but didn't want to say she thought he was dying. She refused to tell us what she thought we should do, come home or wait, but after speaking with her, it seemed clear that Dad's condition was getting worse and we needed to make the trip. My brothers, sister and I went home and we have spent every hour of the past 6 days with him, watching him and caring for him. He looked terrible when we first arrived there to see him. He looked like he was at death's door - or at least how I imagine it. He was breathing heavily, he was out of sorts, didn't know what was going on, he was out of it and in pain. But then, as they days went on, he started to get a little better and yesterday, he got out of bed and watched TV in the living room, instead of his bedroom. He also started eating a little again and he told me that he is not giving up.

 

I am at a loss and can hardly express my feelings about this situation in words. My Dad is my best friend and I hate to see him going through this. I want to be there constantly, but I am so torn and I don't know what to do about that. Work is the problem. I wish I could just forget about work and stay with my Dad, but I don't have much time off available. I took 4 days off from work to be home this time, but my Mom thinks its OK to go back because he is stable again. As I mentioned, I live 5 hours away from them, so its not like I am right around the corner, should anything happen. So, what do I do? I stayed an extra day already and Dad is hanging on. Today though, my Sister and I decided to leave. It was such a difficult decision for me. I cried most of the drive back. I felt like a horrible person for leaving. I don't know if it was the right thing to do or not. Dad is not alone. My brothers are still there, caring for him. They have jobs that can be done from home on laptop computers, so they have no problem staying. However, my job can't be done from home and that makes my situation more difficult.

 

I don't know what to do. I have no idea how much time Dad has left. I was able to talk to him when he felt better over the past few days. I always tell him I love him and I told him he is my best buddy. He said the same thing to me. That gives me some comfort, but I still want to be there. However, if I go home indefinitely, I will have to take all of my vacation time and then take family medical leave, but I would not get a full paycheck for that and I can't keep my apartment without a full paycheck. I could care less about the money, but my family and friends keep saying that Dad wouldn't want me to lose my job. I just hate not knowing what is going to happen. I want to be there with him so badly, I don't even know if I can do my job right now. I feel terrible for leaving him, but he has my brothers, my Mom and my aunt there now. I plan to go back on Friday for the weekend and continue visiting every weekend from now on and taking time off as needed. But, is that enough? I feel selfish for leaving him just to go to work. I plan to talk to HR tomorrow about my options for time off. I am so sad and I am at a loss. This is so difficult. I have always been there for him.

[_Asti_]

Hang in there dscott.

I received a piece of advice that really hit home. I was told "You only have one Mother..." and it clicked.

Will you be able to go back to work and be productive? Or will your mind be on your Dad? If he passes while you're at work, will you be ok with that decision? Or will you have guilt and regret?

 

For me, it was a no brainer.

I took a week vacation, and applied for a medical/stress leave after my weeks vacation was up. She passed away during my 'vacation' time, and I still took over a month of my leave to help with things.

 

I was there with her when she took her last breath, I spent nights at her bedside at the hospital, you can go into work everyday, but its not everyday you can hold your parents hand as they die.

 

I was there through her last days, and I still have guilt about not doing enough, about not being there enough...even though I slept in a plastic chair night after night. I gladly took a cut in my paycheck to experience something so unique, and to be there not only for her, but also me.

[brazilgirl21]

dscott - I think you know you should be there with your dad. Work will understand. It has to. I mean, if after your "leave" your father gets better, you could go back but for now I think you want to be with him.

 

Our parents were with us through everything... Aren't you certain your dad would drop anything and everything to be with you if this was your last days? You clearly want to be with him so I say let go off work for now and be with him!

[Megha]

dscott,

 

be with ur dad or else u'l regret all ur life.

[Nixee]

dscott..... I am so so sorry for what you are going through. As you can probably tell, I am all too familiar with your situation. I am living it..

 

What I have had to do is take advantage of Family Medical Leave to be home to aid in the care of my father. You are allowed 12 weeks leave per calendar year. Of course... it is unpaid leave, and that doesn't help with the money situation.... but some things are just more important, and you will find a way. With my company, and I think with many companies, if you have accrued sick/vacation/personal time - you will take that paid time concurrently so that you at least get some paid time during your leave.

 

Right now I am at home with my family. I am taking some of my leave intermittently... just a couple weeks at home to help my parents, and I'm sure I will be back later. As I know you and anyone who has gone through this knows - there are ups and downs. A month ago, we thought we were at hospice time, and much closer to the end. Then we were offered a surgery option which dad took at the last moment, and now he has a lot more strength than he did. It is a rollercoaster.

 

It is very hard knowing that I'm not here for him all the time. At the same time... I have to sheepishly admit that it is easier being away at times.... because it isn't always easy to be with him and see him like this, as much as I love him. Yesterday was a bad day for him. He managed to pee on himself and then get very frustrated and embarrassed and feel anxious the rest of the day. He often gets confused just trying to figure out which room of the house he's going to. Standing up is a hard task for him. He only eats about 5-6 BITES of food a day. You are made to feel so forceful all the time.... steering him when he walks... telling him where to sit, how to move, what to eat... that he has to take this pill or that... making decisions for him because he is confused and frustrated. Every new medical personnel - doctor, nurse, receptionist, therapist, technician - who meets him.... I feel as though I want to explain - "this is what he's like you know....my dad... He's actually strong... funny, active, smart... and much younger than he appears" ...This guy with the walker and the wheelchair... not really my dad...

 

But... he still IS him at times too. Still his humor comes out. His philosophical side. And he's frustrated... yet resigned.

 

This is such a painful thing to go through... and I hate that I'm going through it. I hate that it has come at all. Especially way too early in life. But I don't know how I could not be here.

 

I haven't yet decided if I will permanently move home... that is way too big a decision for me so far. But I'm here.... as much as I can be....

[hosswhispra]

Hi Nixee,

 

Glad to hear that you are at home with your father. I know it is tough seeing someone so strong that way.

 

My mother died at home on the night of February 18th. I was holding her right hand and my sister was holding her left hand. Her illness went much faster than I thought it would. It has only been 9 days and I am looking for her around the house. When the phone rings, I think it is my mom at times.

 

It's tough.

[Nixee]

I'm so sorry for your loss hosswhispra..... its still hard for me to imagine what that time will be like. Even though he is so very different now... at least he is still here, and he is still HIM. I miss how he was, but I still have him, and he has us.

 

I'm so very sorry *hug*

[Nixee]

It is amazing what a roller coaster cancer is, brain cancer in particular.

 

Back in early February we were worried the end was close due to dad's symptoms, but then a couple doctor's suggested another surgery to put in a shunt and relieve fluid retention. It worked and like a miracle he was walking again, more alert... his incontinence stopped...

 

Gradually over the next couple months he improved, appreciating each day like a gift. He kept telling me, "I thought 'they' were supposed to come knocking for me a couple months ago! But now I have these extra innings...."

 

Just over the last couple weeks I went to visit him and he was amazing... so active. He wanted to go bowling every day. In my last few days there we did something I never did with my dad - we went to Disneyland. Silly maybe, but he knew I'd always bugged him about going to Disneyland with my daddy.

 

.....

 

This past weekend he had a hard night. Lots of anxiety/agitation and couldn't sleep. Mom said no medication would help. By morning he'd lost his ability to walk and it was as though they had reverted back to February. He even had some incontinence. He fell. He was in a panic. He was calling out, asking panicky questions.... asking if they should call 911. Mom took him into the emergency room. In the emergency room he would ask every person who walked by, even other patients, "can you help me???"

 

When they finally got him in and settled (my mom had to ask them for some medication to calm him, as he was still quite agitated), they did a CT to make sure it wasn't his shunt failing..... it wasn't. The next day mom called me to tell me what had happened, and that they were doing an MRI. The MRI revealed 10-20% tumor growth, despite his treatments.

 

This means the end of the line, no matter how wonderful he seemed just one week prior when we were in Disneyland. It indicates that things aren't working or have stopped working, and there is nothing else they can do.

 

Hospice was contacted.

 

Mom told me that the next day (yesterday) dad was much calmer and much better. He was talking, fairly alert, and joking a bit even.... even though he didn't attempt to walk, and he was still very emotional and tired.

 

I literally just got home from my last visit a week ago, and already I am preparing to go back out... but this time I feel it will be my last stay with him until the end.

[brazilgirl21]

Nixee - That fact that you went to Disneyland with your daddy brought tears to my eyes. I had been to Disney with the whole family, but around my 13th bday, my dad took me to Disneyworld. My mom is bipolar (doing very well now thankfully) and we were both going through a very, very tough time with her. So I guess he wanted me to escape from all of it. And he chose Disney. I was 13 and at that time, a trip with my dad alone seemed a little boring and I remember thinking I woudn't have that much fun only my daddy and I.

 

Boy was I wrong. We had so much fun. Just the two of us. We went on every ride, we went to every park. I will always remember that trip.

 

I can NEVER imagine what you are going through. Literally, I cannot imagine. BUT, if anything, it seems like you have been doing so many things with him and enjoying his last moments. You are going to treasure them forever. Your dad seems like an amazing man and no matter what happens, you know you have a great father, who loves you and does everything for you, even in his last days. That should comfort you a little =]

 

Hang in there sweety.

[Nixee]

Thank you so much for the post and the support brazil - To be honest... yes... before this all started happening... I couldn't have imagined it either. Losing my dad has been one of my biggest fears.

 

For all of my life... even though we could fight and fight when I was younger, it was because we were so similar in strong stubborn personality. At the same time, we could also be the best of friends. He has always been my rock and my source of wisdom. Without hardly thinking, I will rail off a quote from my father. If I am stuck on something that needs figuring out - call dad. In trouble, dad will help. I mean... I'm 30 years old and this has never changed.

 

He literally designed and built the house my family grew up in. And now mom is there trying to figure so much out on her own while he simply can't remember too much.

 

Yet it is amazing what you learn to get through because you have to. Dad apologizes constantly for "being a burden"...and of course we tell him he is silly to say such a thing, and we could never see him that way. You are absolutely right that I know I still find moments with him that I treasure - no matter how much he is changed.

 

The last time I talked to him he still thanked me tearfully for going to Disneyland with him... and it meant a lot.

[hosswhispra]

How are you Nixee?

 

Yesterday marked four months since my mom died. It still seems unreal.

[Nixee]

How are you Nixee?

 

Yesterday marked four months since my mom died. It still seems unreal.

 

I can imagine ... ugh...

 

August will be a year since my dad's diagnosis... that is around the median for survival for what he has... although it is clear from the symptoms he was showing that he developed it much sooner than he was diagnosed.

 

I am.... up and down. I spoke with my dad on father's day. He is in good spirits, though forgetful. It is hard to talk to him on the phone because he pays attention to what is in front of him (and my brother put pizza in front of him while he was on the phone... and he put the phone down in favor of eating haha... ) Some days I feel calm and accepting of things. Other days I just cry in quiet times. I feel helpless.

 

I go home in one week to be with him until the end most likely and I am scared. It is the feeling as though there is just no way out of doing something I really really don't want to do. Of course it helps when he feels in good spirits. But when he is upset... it just brings everything to the surface.

 

I guess I'm afraid that is how it'll be when it is all done too. No more tiny shred of hope or feeling of "things are okay..." just because he is still there... even a bit, laughing and talking with us.

 

I know I will be better in time. Everyone knows that. It is just knowing what has to be gone through inbetween that already hurts.

[_Asti_]

I think anticipatory grief is a blessing in disguise, if used properly.

 

I am amazed at how well my family is doing since my Mom's passing in December, but we all say the same "We were ready and expecting it..." and we took the time to prepare ourselves for life without her.

 

It didn't make things any easier...and it was almost a year exactly between diagnosis and her death...and her death came on quick. She went into the hospital on a Monday, and passed Friday morning. We knew it was coming, but it was still a little surreal. But we were expecting it. I know for myself, I was neevr one to 'have hope' so to speak, same with my father. My ssiter on the other hand kept praying she would be cured, and it hit her harder than my Dad and I....but I feelt strong and good because I treated her last year alive as her last. Every holiday and occasion was tough because in my mind it was her last. I knew in my heart that the following year she wouldn't be here. We made it through Christmas without her, and we're smooth sailing through the holidays and special events as best as we can and we learned from early on that things won't ever be the same, they will always be different, but we have to accept that this is the way our lives will be from now on, and I think we accepted that before she even passed...

 

There are still days I bawl my eyes out because I want a hug from her, or pick up the phone and talk to her, or ask her for her recipe for her potato salad, and little things I'll forever mourn...but there's something to be said about preparing yourself for when a loved one passes. I was prepared to let my Mother go, I was ready for the day where I held her hand as she took her last breath. Not many people get the chance to prepare themselves for such sadness, and thats why I believe that knowing someone is going to pass, is a little easier than someone being taken so suddenly, thats just my two cents.

[Nixee]

Wow.... thank you Asti.

 

I admit... I am feeling a lot of pain tonight in particular, and your post put things into good perspective for me on what I am going through. I am keenly aware that he will soon be gone and that I am powerless to stop it.... so yes.. I am grieving a loss that hasn't even been fully dealt to me.

 

But ... it does help to hear from someone who has been there that such grief has helped you out before in being able to function and accept.

 

My mom told me tonight that they brought in a hospital bed for my dad. He is still walking, though weaker, and often tired. He is still eating. I am set to be home in one week... and suddenly I feel like I should have planned to be there sooner...

[Nixee]

Everything is changing so fast.....

 

Last night I had to change my flight and I leave at the crack of dawn tomorrow morning.

 

Dad is basically bedridden now, not speaking much if at all, and mom felt it best that I get home ASAP rather than even waiting the few more days for my scheduled flight.

 

This is just so unreal to me. How can something you've known was coming still feel sudden, unexpected somehow and... well... horribly unfair?

 

I've been home less than a month from my last visit and I'm trying to pack again and I feel mentally slow, like I just don't know how to do it... I'm out of steam just forcing ahead.

[metrogirl]

I'm so sorry Nixee. I know how hard it is to watch your father disappear right before your eyes, I lived that nightmare myself 4 years ago.

 

I feel so sad for you and right now words elude me. Please know that you are in my prayers.

[Nixee]

Thank you so much metro....

[Nixee]

Dad passed away early Saturday morning....

 

I got home Tuesday, just in time to be taking care of him round the clock with mom, my brother and another dear friend helping at home. He'd lost ability to communicate, and couldn't acknowledge my presence....although I believe he knew I was there.

 

The first couple days were the hardest. Restlessness..unsure of medication times and doses... only thing you can care about in the world is making sure he is ok - that he is comfortable. All he wanted to do if he couldn't sleep was get out of that hospital bed... yet he couldn't walk. My heart broke over and over and over and sleep didn't happen except for 1 hour intervals.

 

When he finally had settled - gotten past the restlessness - his face calmed, and he was able to just sleep. We nursed him around the clock with the medications, and making him comfortable, until finally he was able to let go...

 

And now he is gone.

 

It seems so unreal still. I go back and forth between feeling calm, and then restless. I felt the devastation at first. Something I was expecting and knew was coming for nearly a year... yet it still felt a shock. But now... numb again almost? As though he's just gone away for a bit. Things I want to ask him or talk to him about .... my brain automatically makes the mental note, "well I'll just ask him later..." ...and then I realize I can't... I won't..

 

I tell myself all the ways that I know I'll be ok.. that I told dad I'd be ok... that mom would be ok... that my brother would be ok... And then suddenly I just know how much we will miss him. How much I miss him already.

 

I think of all the things I'm going to do... things I should have done long ago. Things that dad wanted me to do, that will make him proud. And it gives me a sense of peace and calm.

.... And then I think about him not being around for any of it. Not being around to meet grandkids... to walk me down the aisle maybe someday... for so many things...

 

I've grieved big loss before. But this just feels different. He's my dad. I hit the jackpot with a dad like him. My family shouldn't have lost him.

 

I hate cancer.

 

Gathering tons of old pictures today for memorial at week's end. Lots and lots of reminders of a good childhood. Overflow of father-daughter pics