The simple fact that you’re able to spend some time with your kids, real time and attention, is huge. Being a parent is hard as hell without any of the other stuff.
Well done.
@Tyjenks, I don’t comment on every one of your posts because I frankly don’t know what to write sometimes and I think my response would be hollow in comparison to the reality you face every day. I just wanted you to know that I really am stunned by the way you’re sharing this story with us. Thank you.
Some of us will have to walk the road you’re walking someday, @Tyjenks, and it’s like you’re providing a map. We are grateful. Your wife is so brave.
Agreed, and some of us (myself included) have already had to walk this road and can provide our sympathy - but nothing really can prepare you for it. Those last 2 weeks with my dad where we were essentially on death watch, are burned into my memory forever. However, even when he was incoherent and eventually unconscious, I wouldn’t give up that time for anything. Even if we couldn’t communicate, I am so glad I was able to be right there and hold his hand through it all so that at least some part of him knew he wasn’t alone.
Prayers to you and your family, Tyjenks. I too appreciate you sharing the story. It connects us all, not just with you, but about sharing the burdens of life that come unexpectedly. Thank you.
My thoughts are with you and your family.
Thanks everyone. Many of you that have been through this know everyday is faced with uncertainty and dread. Tomorrow at least I have a gameplan. You same people may also recognize the use of steroids to give your loved ones more time. That is sort of where we are. Increasing her dose to hopefully increase her alertness and appetite. It may not work at all and it was a struggle to explain to her and keep her involved in the decision. Steroids worked around Christmas to reduce brain swelling and bring her back to us. She has not eaten much in the last couple of days and has been very out of it. I have less confidence in their success now, but we are doing what she wishes as best we can. After this attempt, I will speak more openly with the kids.
As for now, more Techno Bowll by my 16 year old’s request and “We can stay up and play as late as we want. You don;t have to work.” :) She beat me on 4th down in Overtime last night at 11:30pm.
I continue to be happy to tell my story here to help me process things and if it helps anyone in the smallest way, I am glad to be able to give back in some way.
Just a quick update. They increased my wife’s steroids in the hopes, on Friday, that she would get some increased appetite and be more alert. That has not been the case. I check on her every one to two hours and get her to drink. She is taking her meds, but some times it takes a lot of coaxing as her disorientation and tiredness are pretty bad. She has eaten practically nothing in three days. I have been giving her some Ensure type drink with protein and nutrients, but her desire to take anything in is very low. Tomorrow hospice will return to check her out.
My wife’s sister is in town from Seattle. She came in today and will be here a week. She is wonderful. Realistic and understanding. I am very glad she is here.
Pretty depressing update, but as I sit here, I know people wonder and are concerned and I’d like those people to know and that includes all of you. The kids see how she is. It is sort of similar to how bad she was around Christmas. That was due to the brain swelling, but this is not. I told them she is not doing well and we are trying different things. We’ve still managed the weekend and will keep going through the work week.
Thanks for the update, Tyler. I hope she improves this week and gets some energy back, starts eating a bit better.
Keeping you and your family in my thoughts Tyler.
Today the nurse asked what her “tall, handsome husband’s name” was. She said 1/XX/XX (Can bots pull that info from posts?). Her birthday. The nurse asked her kid’s names and then asked “Rebecca” what’s your name, same result. Her birthday in numerical form I spent about 30 minutes getting her up, struggling to get her to the bathroom and then sitting as she prepared herself for the trip back to the bed. A bed you can see from our master bath as it is not far. Tomorrow we get a hospital grade bed and a bedside commode.
None of this is palatable, I realize, and it is all sad, but I do better when we have stuff I can do and milestones and things to work toward. Now I wrestle with what to tell the kids. My 11 year old asked if Mommy will get better. I should have taken that opportunity to tell both kids “No. She is not”, but I said I’m not sure.
Neither the hospice nurse, my wife’s mom or I think any of this is the medicine. It is the disease and there are dozens of little things I have not mentioned that support that indication. The two experiences mentioned above are the best examples.
My biggest concern is the kids. I think they will be fine eventually. Their strength has been amazing. They do not sir around worrying, but they also assume there will be something after this. Things will either continue like this or more normalcy will return.
After she’s gone, I’ll have issues, but my finely tuned crisis mode management from years of crappy life situations has kicked in and is currently running well.
Perhaps the hospice nurse knows of some resources to help you talk to your girls about what is going to happen?
Virtual hugs from my family to yours.
I think I am prepared to do so. I have been preparing for a while and preparing them. There is a certain threshold for worry and dread you hit and sort of become numb to extremes you would think you could not tolerate. I surpassed that at some point.
We also have a not-for-profit connected to our Children’s hospital called the Amelia House that specializes in children who have lost a parent. So I will be contacting them as I should have done already.
Also, the hospice nurse is wonderful and said she could talk to them. The service also has a social worker who can assist us with that.
Thanks much.
Tyler- What you are in now is the dying process that can take days, weeks, etc. Biologically it’s caused by a sprial that starts with not getting enough nutrients and then enough water. My dad had trouble drinking water and when he was not getting enough we knew it was less than a week until dehydration finally caused him to pass away. This was greatly preferable to the other route for his kind of cancer (brain cancer) which would have been non stop vomiting and seizures. So we saw it as a blessing entering this phase. His pain was taken care of and he was allowed to pass peacefully.
I realize that’s probably not easy to read or face, but work with your hospice nurse. They are intimately familiar with the natural process of the end of someone’s life. We even had a “what to expect” brochure listing 5 days before, 1 day before, etc.
I know this is an extremely hard time for you and your family. I hope my insight is helpful but I fear it may be making you feel worse. Still, it’s all I have to offer so I thought I would try.
Thinking about you guys lots.
I can’t think of anything to say about what’s happening, but I’ll just note that I really like your writing Tyjenks. The literal quality of putting words to paper I mean. You have a way with it.
My dad had stage 4 lung cancer that had metastasized to his brain and lungs (and probably pancreas, as he developed diabetes near the end as well).
I was with him for the final three weeks, and he was about where Tyler’s wife sounds. Hospice helped to install a catheter so he didn’t have to get out of bed to pee. He was not conscious at all for the final four or five days. The death rattle lasted about three days.
My best wishes to you and your family, Tyler.
All the experiences and information is actually quite helpful as I prefer having the knowledge surrounding the possibilities rather than having no idea what is happening from one minute to the next. So, at this point, none of it is really hard to hear as I know it can get bad and could be worse. Also, 27 months or so of this journey has given me the ability to process any information.
My wife’s is breast cancer that recurred and metastasized to her liver, lungs, spine, sternum and brain. So it is really difficult to tell what is causing what symptom. The liver mass was the worst. The radiation, per subsequent MRIs, rendered those multiple tumors inactive, but they probably have started back up. Hospice is being very helpful. They ordered a bed yesterday afternoon and it is already here and installed. Got up this morning to move our bed out, move her to my oldest’s room and now she is in the adjustable bed. I have the name of a sitter I will most likely call in a day or so.
She can eat bits of fruit and applesauce. I’m still able to get her to take her meds. She had a nurse assistant from hospice give her a bath. Something only a week ago, when she was alert, was still resistant to. It went relatively smoothly and I know she probably feels better for it… Again, maybe too much info, but people simply don’t know what to expect because people don’t want to mention those parts when discussing these things. The woman was wonderful and my wife actually was joking with her some, which she will do with me once and awhile when she rouses out of her sleepiness.
So, we’re over the next hump. Thanks for being here as I walk and talk through this all.
You’re right, end of life care is a gaping hole in our healthcare, and just generally hard to talk about with people. Death is a presence over the horizon for us most days, until something happens to make it look larger, and you’re living with that daily.
I was helping my five-year-old son get dresss this morning and he said to me, “Daddy you’re the king of the house, but one day I’ll grow up and when you die, I’ll be king!” I try to instill a healthy understanding, a respect for mortality in my kids but I’m not sure I have it myself. When I was younger I didn’t care as much; now I have a wife and kids and I’ve got something to lose. If a mugger put a gun to my head I’d cry and wail, don’t kill me! I have a family! And if a doctor told me he saw a spot I’d tell him to spare no expense, just don’t let me die.
But still I dwell on it. How can I not? My death is out there somewhere, unless it’s actually already growing inside me. Like Zuul in Ghostbusters, I wonder what form it will take. And then go back to hoping its decades away and get back to what I was doing.
Anyway that’s my rambling way of saying you’re walking a tough road, which you already know. But you must also know that you are providing comfort, such as it is, in your wife’s final days, and that’s commendable. We should all be lucky enough to have someone care as much for each of us when our time comes. To say to you “stay strong” feels like empty words, because who supports the supporters? If you get some small support from this thread then I’ll add my voice. You go, girl.
I think you’re doing great. When my mother was in her final days we didn’t know when the last day would be, and I was not able to be away from work. But you have been there supporting your wife this while time. I expect your wife is appreciative. And you are serving as an example that your children see.
One of the things I’m happy about is that I went to visit my mother one night. There were many reasons not to go that night because it was a work night and my wife had already gone to see her earlier in the day. But the two of us went and spent a little time with her and I got to say some nice things to her, things that most of the time we say casually in passing and that are easily taken for granted.
She passed the next day. So that last visit sticks in my mind and is important to me. I couldn’t be there in her very last moment but i was there very close to it when she was just lucid enough to register what I said.
Anyway I don’t know why I felt I had to relate that but knowing you have been there, present for so much just says a lot to me and I find it quite admirable of you. I wish peace to you and your family.
Everyone’s thoughts and stories have something to contribute and I appreciate each and every one in relating their difficulties whether similar to mine or not. In your telling, you may be hitting a nerve or opening an insight to someone’s experience that they may be going through or may encounter one day in the future. I hope reading this thread can lead to people’s better understanding and a sense of togetherness and feeling of vocal support. I know it has done so for me regardless of any one story’s similarity or dissimilarity to my own.