Last June, my dad was had to go to the emergency room where my mom and I found out that he has stage four lung and back cancer and knew about it for at least six months prior. In September, he had to go to the emergency room again. My mom called me and told me to come home (I live in NC now - they're in VA) as she thought time was near.
Early September -
After coming back home from the hospital, he was admitted to outpatient hospice care and according to my mom, only had a few weeks to couple months left. Fortunately for me, my work was extremely supportive and told me to work from home for as long as I need. So I packed up a few weeks of clothes and went back to VA.
Since I've been home, when I am not working, I've been helping my mom do things that she has always relied on my dad to do for her.
Late December -
Four months after leaving the hospital and being in hospice care, his health and well-being has hardly changed. The only signs of degrading health is that he needs to use the walker to go to the bathroom sign late November or so. Besides that, he's been bedridden this whole time. And spends most of the day sleeping on and off, eating, and watching TV.
What's been bugging me is how relatively "fine" he is. I'm not complaining about spending more time with him. But when we were told that he should've been gone months ago; it's been getting more frustrating as time goes on. Like I said earlier, I've came home from NC to VA. My brand new house (which I bought last winter) and life are all down there. In fact, my ex-girlfriend of four years broke up with me late September because she just couldn't handle me being up here the entire time until things concluded (and other problems that I couldn't help resolve because I was too far away). I feel very trapped and my life feels like it's on hold for basically a prolonged, poor quality of bedridden life.
I under stand health professionals aren't always 100% right, but how can they be this off to where people that come to visit him ask me if he's been getting better?
The family is stressed out as well. No one expected her to last this long including hospice. And while the family adores their mom I know that they wish this would just be over and I can't blame them. Their mom is wasting away in bed day after day and now the husband is beginning to go downhill as well.
When I first admitted this lady to hospice I figured she had about 10 days. I never imagined that she'd still be with us 4 months later. She's incontinent and they are now using child diapers on her because adult briefs are too large for her. That's how much weight she's lost. I don't know how she's still functioning. She's also still lucid and competent and awake. She's not going to get better and she is continuing to decline but she is stable for the moment.
I have no medical reason for why this lady is still alive. She's basically starving to death yet she continues to have urine output and she produces stool. I know she's ready to die as she's told me as much. Some of her adult children have given her "permission" to go when she's ready yet she continues to hang on. And I think her family is ready to let go and stop living in this limbo which is so stressful and adversely affecting their own lives.
This type of stuff does happen. Distant relatives come to bring food and tell the family how happy they are that their mom/wife is still with them but I know that's not how the family feels. They are so stressed out and their lives revolve around this waiting and it's awful to watch. It's awful to watch my patient wasting away in bed and it's awful to watch the family watch their mom wasting away in bed day after day, week after week, month after month.
When people ask you if he's getting any better tell them that you're making sure he's as comfortable as he can be. And I'm sorry you're having to go through this. I know how difficult it is.
I missed a couple things during my little rant -
I'm 24 and sometimes I feel very trapped and missing out on experiences 20-somethings have. I know I'm being melodramatic, but it's pretty lonely up here considering all of my high school friends have all move away and moved on. Also, having my house unattended for this long kind of freaks me out. Though there's really nothing to steal considering it's fairly new and I haven't gotten any furniture yet.
As far as my dad, he's still 100% mentally sharp and the same as he has always been. He's just immobile now and needs to use a nebulizer and morphine to get through the day. He's lost a ton of weight since August, but he still has two or three normal full meals a day. He sleeps on and off throughout the day and night. Which I assume is because he's bored and doesn't know what else to do.
I feel like I need to be up here to be with him when he passes. He's given up so much from the day I was born in order for me to have the life I do. We're not touchy-feely, it's more like a respect and honor things - if that makes sense.
When my mother went on hospice we were told that she might not survive to the end of the week. Four months later they discharged her from hospice. That was almost two years ago. She is not at death's door now.
My best friend's husband has stage 4 cancer. I was him Christmas week and he looks better than he has in months. Ups and downs are to be expected.
I think you should go home. You've done your part for now. I drive 12 hours each way to help my elderly folks when I'm needed but I'm not going to give up my life and relocate. I don't feel guilty about it. It's just the way our lives worked out over the last 30 years.
If your dad takes a turn for the worse or they can't get by without your help make the drive, do what has to be done, then go home and resume your life.
Unless your employer really is okay with you staying in VA, then I would return to my life and work and get other outside help to help with your parents. Of course, if you feel more comfortable staying and waiting, then I think that's fine too.
As a non medical professional I assume you are not able to observe the subtle changes in your Dad. It certainly sounds as though he is getting weaker by sleeping most of the time. being bedridden can also rapidly increase weakness as can taking little food and the extreme pain that accompanies cancer in the bones. For him it is a blessing that he is able to sleep and be at home with family to care for him. Hospice would have discharged him if they did not see signs that he was continuing to follow the relentless journey towards death. Stay or go as as you see fit. Your new house will still be there, your girlfriend won't but isn't it better to find out ahead of marriage that she can't cope with adversity. Think of military wives who are separated from their husbands for months or years.
You would be doing your mother a big service if you spent this time teaching her how to do the things around the house that she previously relied on your dad to do. let me tell you the story of Mr C who should have died months before he did. he was in the final stages of life but he was worried about his wife Mary. how was she going to manage financially and who would cut her winters wood supply. he spent his last six months making and selling metal plant stands and cutting wood, a very dangerous occupation for a man who had already decided he was not safe to drive. He weaned himself off the heavy duty narcotics he needed for pain so his judgement was not impaired when using the chain saw and got that wood piled up for Mary. One Sunday afternoon he came into the house for a break and a cup of coffee and just died right there sitting on his own sofa in the living room.
I realize I don't sound very sympathetic to your situation which is because i don't feel that way towards you. You are not the first sone to take a break from life to take care of a parent. If you stay on here for a while and I don't expect you to then you will understand the great sacrifices many children make for their dying parents. Feel free to lash out at my reply but I do try and tell it the way I see it.
Perhaps it would be better if you went back to NC so Mom can concentrate on caring for her dying husband rather than having the added burden to servicing your needs while you are in the house- another mouth to feed, more laundry etc. You can also report this post and i may get my knuckles slapped by the admins.
In other words, I suggest a middle way.
I was alone with my husband when he died. But everyone in the family (including his ex-wife) had seen him within the last two weeks. Our out-of-town daughter was there for a couple of weeks and then returned home. He'd said his goodbyes and he knew how much he was loved. I am glad I was there to hold his hand. But some people apparently prefer to die alone and wait until their loved one has left the room.
I am positive you will never "abandon" your dad, whether you are physically in the room when he dies or not. I think the way to get input on this issue is to talk about it with your dad.
I think I'll begin studying/ preparing for the GMAT in order to pursue and MBA degree. That should keep me occupied and combat the feelings of isolation and loneliness. Plus, my dad always wanted me to pursue an MBA or MS in CS. So seeing me study might make him happy.
Could your parents afford to hire someone from an Agency to come in to help your Mom? Mom could also be so very overwhelmed and exhausted. Ask the Agency for someone who is a jack of all trades. Example, my Dad has a caregiver who does the housework plus she knows her way around a tool box to fix things. She even jump started Dad's car the other day.
And don't worry if by chance you are not there for your Dad's final day, with families living all over the world, it has become impossible for everyone to be by the bedside. In fact, some seriously ill people rather transfer over when no one is there.
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