Nearing the end?

Noellesmom said:

Answers

Let us know how things are going for you and your wife, Papa.

Please take some time for yourself.

You and your wife will be in my thoughts and prayers.

Hi Noellesmom,

Thank you. We talked about entering a hospice program and my wife simply isn't ready for that step yet. It's a final step and although she understand her life is nearing the end, she just isn't ready to openly accept it. It will happen when she's ready. Funny you should mention taking time for myself. I decided to take some time out just the other day and take the motorcycle out for a ride. Battery died (haha). It must have heard us talking......It'll have to wait for another day.

Ladylacy said:

Hospice

I would talk to her doctor about hospice.  My husband was on hospice from 9/13 to the end of July 2015 when he passed.  It was in-home and I can't say enough about how great they were.  Of course, when you go on hospice you stop all treatment, something my husband decided for himself when his 2nd primary reoccurred and spread to his right lung.  He did pretty good up until the last month or so.  Thankfully he rarely complained of pain but then I gave him his pain medication every 4 hours round the clock, sometimes it was every 2 hours at the end.  Hospice provided the pain medication and everything we needed to make him comfortable.  He was also on Ativan for sleep and nerves.   The last week of his life, our nurse asked me did I want to put him in-patient where they could deal with his pain better, but I had promised him I would keep him at home. 

It was hard to watch him decline and at times I prayed for God to take him, as bad as that sounds.  In the end he only weighed maybe 90 lbs.  Just remember to take care of yourself because you are important too.  Hospice has people that will come in and relieve you for an hour or so, but I never did that.  In fact at the end I was told Medicare would pay for nurses round the clock, but to be honest I didn't want all the strangers in my home.  Thankfully two of our sons and their wives were with me at the end. 

After watching what my husband went thru, I always said I couldn't/wouldn't do it.

Wishing your wife, you and your family, peace and comfort.

Hi Ladylacy,

Thank you. I haven't talked to my wife's doctor about hospice, I know that it would upset her and I don't want that to happen at this point. I feel that I need to respect her wishes regarding hospice and not push her into this since the outcome of the decision is pretty final. I understand that when we enter a hospice program, treatment stops and the focus is palletive care. Ironically, we just recently stopped her chemo pills due to severe side effects. The drug that we were on was pretty much the last resort chemo medication, so without it, the only drug she is taking for the cancer treatment is an estrogen blocker. I'm not sure that the doctor will find another oral chemo drug that will work for treatment, and I don't believe she will be able to handle infusion chemotherapy any longer.

Unfortunatly, my wife is in constant pain that we simply haven't been able to control well. She's on some pretty heavy narcotics and we're struggling with finding a medication that will help without knocking her out. She does not want to be drugged to the point that she isn't able to function, think, and carry on a conversation. Her oncologist is amazed that she can funtion on the level of pain medication that she's taking. She's on a very high dose patch for continuous pain and is on the highest dose of a breakthrough pain medication that she can take. I give her the breakthrough medication every two-three hours. As her doctor said, she needs to be on a pump that allows her to regulate the medication as she needs it. We would probably need to be on hospice to have that since I believe it requires nurse oversight.

It is hard to watch her decline as you mentioned. I don't think it sounds bad at all to ask that it ends. I pray quite often that she passes in her sleep so that her suffering ends. In my wife's case, she has lost around 110 pounds and is extremely fragile now. She had surgery last week for a fractured left humerus. She has a tumor on the inside of the humerus that grew to the point it fractured the bone. The surgeon placed a rod and pins in the humerus to stabilize it, but said that her bone is so thin and fragile, it may not heal following radiation. This is quite a decline. She had a rod and pins placed ini her right fumur three years ago and a rod and pins placed in her right humerus less than a year ago. In each case, once the tumor was killed from radiation treatment following the surgery, the bone regrew very quickly to where it had completely filled in the deteriorated section within a few months.

I guess to sum everything up, I really believe that my wife hopes to pass without having to go into a hospice program. It's difficult at times to realize that she is nearing the end when you speak with her. She is still so full of life and tells me that except for the pain in her bones, she feels good. Although her sense of humor has waned, she's as pleasent as she was before her cancer metastisized. Then reality steps back in. She has tumors in both lungs with the lower lobe of the left lung completely collapsed; she's on oxygen 24/7 and has difficulty breathing without the oxygen. She has tumors in both lobes of her liver and the lymph nodes in the neck, clavicle, and chest area are swollen and cancerous. There are tumors in virtually every part of her skeletal system and cranium, even those bones that have received radiation in the past three years, and the majority of her ribs and sternum are fractured from tumors. I don't feel the end is far off, but I don't have any idea how close it is. I really think that at some point, things will all come to a head and she'll simply pass and pass quickly. At least I hope. OK, I think I'm rambling, so it's time to sign off. Thank you so much Ladylacy for your feedback and insight. I know several people that quickly decided not to go through treatment and additional suffering, and I'm not sure that I could do it either. Hopefull we'll never know.

LindaK. said:

Hospice

Thought I would add my 2 cents here.  My husband was on home hospice for about 3 weeks.  He also used high doses of pain patches and both pill and liquid dilauded.  The agency we were with was not very helpful, I had multiple issues with getting a hold of someone during the overnight shifts.  I mean, people who are on home hospice are sick 24 hours, not just 8 am - 5 pm.  Our daughter is a nurse so she was the 2nd caregiver which was a godsend for me.  She pushed for him to go home from the hospital with a pain pump, which they weren't too willing to do.  At the last minute my husband decided he could handle it with the patches, pills and liquid.  He did pretty well during those 3 weeks but I could no longer care for him around the clock because he started falling and I could not get him up by myself.  He finally agreed to go to inpatient hospice and I drove him there.  It was one of the hardest things I ever had to do.  He was immediately put on the pain pump.  The staff there was fantastic.  They did their jobs and let me just be his wife.  I never left his side for 11 days.  I knew he passed not suffering.  Someone told me not too long ago that hospice is controlled suicide.  I don't agree with that.  My experience with inpatient hospice was peaceful and loving.  I do not regret taking him there. 

As far as your wife is concerned, as long as she is positive and wants treatement, you will have to support her.  As long as you can handle it at home, you should honor her wishes.  Even if she still wants treatment and you can't handle it, maybe she can be inpatient in the hospital.  Our cancer center had its own hospital where my husband was inpatient 3 or 4 times. 

You sound like an excellent caregiver.  Keep up the good work, I'm sure your wife is very appreciative

Linda

Thanks Linda K. I'm sorry for your loss. We have 3 hospice organizations in our town (not quite sure why) that offer both home and inpatient. We had a friend whose mother was on home hospice for a couple of weeks, and she cant's praise them enough. Her mother had dimentia and just finally shut down. Another friend's father was moved from a hospital to inpatient hospice and passed a few days later. She had nothing but praise for the hospice as well. They both used the same hospice. I don't agree with hospice being controlled suicide either. They allow the patient to pass with dignity and peacefully, and the family to focus on saying their goodbyes and coming to terms with their loss. It's a great service that takes some pretty special people to work it. I think it would be very stressful on the hospice workers. 

I believe my wife is real close to stopping treatment. She realizes that none of the treatment has been successful and doesn't believe there are many options left. She is still considering additional radiation treatments to kill tumors in localized areas for pain relief. It's a balancing act trying to determine if the radiation treatments will create more problems that end up outweighing the benefit of the pain relief from the tumor. All areas that need radiation to kill the tumors also involve multiple organs. As an example, her L2 disc collapsed and the tumor was impinging the nerves. She had radiation on the L2 and L3 vertebrea and it killed the tumor proving pain relief and the eliminating the nerve impingment. The bad thing though is that she spent a month receiving infusions, and being and out of the ER. She was finally admitted and spent 5 days in the hospital due to severe radiation colitis.

We have a couple of hospitals in our town, and my wife's doctor tries very hard to keep her out of either one. My wife's immunity is gone now and her doctor is very concerned that she'll pick something up while she's in the hospital. All of the radiation and surgery is connected with one hospital, and unfortunately, it has a bad reputation for infecting patients. The hospital has been working very hard to correct its past, but it's a little scary when you have no immunity.

My wife's bother, a recently retired MD, is coming to visit soon. I'm hoping to get some good insight on her condition and maybe some good tips on providing care for her. He may also be able to provide her with more information to help her make additional treatment decisions. She's a little anxious about his visit though. He's very matter of fact and open about explaining her condition and what she should expect. It will probably be more of a reality check than she would like. I think he'll give her information that her oncologist has not. My wife told the oncologist once that she didn't want to know specifically how bad she was and the oncologist has honored that since.

Thanks for you support and kind words. I think we all do the best that we can. I can't imagine how difficult it must be for my wife or any cancer patient to realize that they MUST rely 100% on someone else for basic things like food and drink, mobility, medication, and all of those things that we've done since we were infants.