End of life journey

rockyfords said...
Oh Beth-
You are so strong. You are love in action and presence. Gary is special, as are you.. You guys give me comfort and faith that the special will be there regardless. What you share I carry with me. I will recall your story when I need strength down the road.

Thank you so much.
Rf

Rockyford's words resonated for me Beth - couldn't say it better (and thanks). This string is a valued legacy to our community - to each of us. Thank you....Wilderness

Beth, what Charles said, I've done it for someone and it's an easy process. It might make it easier in Gary not to have to travel to get drained. The tube is inserted by an Interventional Radiologist. Unless of course, Gary's physical situation prevents him from having the tube inserted.

It's great that Gary is able to enjoy time with family. And he is so lucky to have you.

Aimzee,
Thank you for asking.
I meant to add this in my last post: When Gary was a child he went to see his grandmother who had cancer. They drove several hours to see her and she refused. Gary never forgot that and has made sure that he is always open to seeing the kids. Even when he's in bed.

Roberto learned to sign before he learned to talk. He would get so excited and sign the word grandpa over and over before he got up the driveway to our house. He could care less about the changes happening in Gary's appearance and his inability at times to get out of bed. He will stand at the door to the bedroom and bug me until I let him in to give P-paw a kiss.

Isabella and Vanora's half sister are the only kids old enough to understand. Isabella is with us a lot and adores her P -paw. Over the years Gary has "come back" so many times that we have changed the way we approach his ilness as she has matured. She just turned nine.
She was two when Gary was diagnosed. First we had to explain that the medicine he was taking would make his hair fall out. She went to Portland with us and watched Gary get one of the immunotherapy injections. I don't think her mother and I used the word cancer until just recently. She has seen him at his best and when he was too sick to get out of bed for days.
We told her originally that Gary was sick and that his sickness would probably make him die. This was not long after she was old enough to understand what death was, and on one occasion when he was really doing poorly, that he would likely not live for much longer. She has been told that he will not get any more medicine to help his illness. She spends a lot of time when he's awake just sitting next to him in the recliner, careful not to bruise him or jump around. I have chronicled her childhood in photos sitting next to Gary in that recliner, a variety of feline friends in Gary's lap, or her little brother.

Isabella's parents are not religious, but she has her own ideas of what the after life is all about, and she has accepted that she will lose her beloved grandfather. A long time ago she had a dream that Gary was a ghost, but a friendly one. She was probably three, but she never forgot that dream. I get goosebumps when she mentions it.

I lost my best friend to pneumonia when I was seven, and I was so unprepared to handle that loss. I believe it is better for Isabella to have the knowledge. Others may disagree, and that's okay. I work with children in my job. Children handle death and dying differently, and it may cause undue trauma and worry for some children.

'Nother subject...Thank you for ascites replies. I'm going to see about getting Gary checked out by our GP or home health nurse here at our house, because his retention of fluid is getting really bad in abdomen and groin on down. I was also able to find information that enlarged prostate could cause the groin area back up when urine doesn't drain well. Either way, he needs some aid to get it resolved so he can rest comfortably, and I think he will need professional encouragement to stop ignoring his discomfort and get treated. Lately I feel like I'm impersonating an RN, and I'm not that good at it. Gary is always more stubborn with me than others. Yup, I'm not alone in that problem guys, just in case you were seeing yourself or DH in that comment. LOL.

From the book WHEN BREATH BECOMES AIR by author Paul Kalanithi:


"The tricky part of illness is that, as you go through it, your values are constantly changing.

You try to figure out what MATTERS TO YOU, and then you keep figuring it out ...

Death may be a one-time event, but living with terminal illness is a PROCESS."

Today I completed the coursework for my religion course other than the final exam. Feels good to be done and the hot, muggy tropical air didn't bother me a bit today!

I think having to read about some of the amazing women of the bible was a good thing. Not something I would do on my own but the stories made me reflect on my own life and those of others, yours included. I see strong women and women leaders, and women who inspire much like you.

I hope that your faith is keeping you lifted and that you had a wonderful weekend. I worry a bit when I don't see you post but I know you are taking some much needed time for you and for other loved ones as well. I think this is something I need to somehow learn to do as well.

Cheers my friend!

July 7th-A very nice and competent home health nurse arrives first thing, armed with a Foley catheter and information. I no longer feel alone and in the "dark". She has consulted with both the MO and GP, and is not certain she will be able to get the catheter past the prostate. Gary is up and participating. He has been able to shower with my assistance and has eaten a good breakfast.
He is agreeable to getting the catheter with hopes that it will bring some relief. After a bit of sweat on the nurses part and fervent prayers on mine, the blasted thing finally strikes gold (urine). A quick lesson in how to drain and clean and she is on her way.
Sister Donna arrives for the weekend respite care.
Gary has a lot of pain from the catheterization process, and so we keep up the pain meds. He is still having a lot of pain at the tip of his penis. Plus that darn urge to pee, even though he knows the catheter is in place.

To be continued...I'm still going to try for a weekend with my friend and granddaughter in Bay Area.

Post Edited (celebrate life) : 7/11/2017 10:19:40 AM (GMT-6)

Thank you for that Halbert. I was instructed on the liquid morphine, but didn't know about bladder spasm medicarion. The home health nurse just called to check in and she is going to talk to the medonc about getting something.
Speaking of MO, ours is determined to take the lead role in Gary's home health and hospice care, but I have also been communicating with the GP, as she is primary for both of us. Is it unusual to have the MO continue to be involved once tx has ended and hospice and home health are involved? Last week I did not feel the MOs office was being responsive and helpful. I even requested the GP take the lead role since I have a good relationship with her and she has been keeping up with all of the notes from the MO. But I wass refused by the assistant and then they started responding.

Early Monday morning, July 10th, Gary got out of bed and made his way to the bathroom, forgetting he had a catheter and feeling that urge. When I became aware he was up I got out of bed, but before I made into the bathroom, he fell and was unable to get back up. After some struggle I was able to get him back into the toilet and assess the damage. He has a pretty decent knot on his forehead and a couple of small tears on his arms, and bruised knee.

The home health nurse was planning a follow up visit and came out right away. She gave me some lidocaine gel to help with the pain at the tip of his penis. We talked about how I might be able to keep him from getting out of bed and wandering off without assistance. He's still just mobile enough and disoriented enough to pose a real hazard to himself. about ten p.m. for past two evenings he has decided he wants to have a cup of coffee. No amount of persuasion will deter him, and he says if I won't make it for him, he will make it himself. So I assist him to the recliner and make him coffer. He takes a sip and announces he's going back to bed. Not more than ten minutes later he's up and wanting to go to the bathroom. When I convince him that he has a catheter, he wants to sit in recliner. Back and forth we go until after 1 am. He's obviously agitated, and each trip he is breathless and shakey. I try the morphine drops, larazapam, and at one point a firm "get back in bed, you are not getting up!". He finally fell asleep in his recliner about 4 am.
When he is fully awake, his ability to grasp reality and his cognitive function have significantly deteriorated over the past few days. His eye/hand coordination has also deteriorated and he has difficulty picking item up,especially if it involves fine motor skills, like picking up medication from a plate or seeing and grasping a napkin off a table.
In have a very sweet gentleman from hospice volunteering a couple of hours respite taday, Tuesday. I plan to go work out and grocery shop. What I really want is a nap though!

Hi Beth,

Just to add some more thoughts.

Sometimes folks can get an early warning of a night wandering adult with the very low tech early alarm system of hanging some bells on the doorknob(s). Motion detector lights might have some application, too. Or maybe putting a simple door latch way up at the top side of the door. Etc.

You might possibly gain some more peace of mind for going out of town for important respite time if you create and put a pink POLST Form on the refrigerator and/or at his bedside, if you may have not already done so. This kind of thing can sometimes prevent a 911 call made by somebody while you are not there from spinning out of control into invasive and unwanted treatments that Gary may not want, as EMTs arrive or as he may be transported to a local medical facility. See also:

capolst.org/polst-for-patients-loved-ones/

As for the late night sip or two of coffee, ... maybe he'd be OK with some "decaf" instead of "regular"?

Hope you get some sleep, too, Beth.
Charles

Thank you all for your replies. I have ordered a bed rail from Amazon to see if that helps. I have also decided to try to skip the morphine and lorazepam to see about the paradoxical reaction. Sister Donna thinks the morphine agitated him. I looked up bladder spasm relief in line and I have been also adding baclavan to the evening meds. And I used my Amazon echo to get play soothing music earlier when he needed some relaxation (Led Zepplin on low volume). Our home nurse called twice to check on us and hospice nurse called too. My respite volunteer came over and stayed with Gary while I worked out, went to the bank and grocery (Alexa shopping list) and hardware store for toilet tank flap and rake (yard work and leaky toilet still have to get done when you own a home, PCa or no). Gary is sleeping much better thus far this evening. No coffee requests and has only forgot about his catheter one time. He even ate supper. Much better day overall, and hopefully we can both sleep. Good night dear friends.
Special thanks to Carolyn for such a sweet meditation. I will think those words as I go to sleep.
Beth

Dear Beth,
I want to let you know that you and Gary are in my thoughts and prayers each day. All of your postings have been invaluable to me as my husband and I navigate our own path along the advanced metastatic challenge.

I'll never by able to fully express how meaningful your thoughts are to me. You are a dear friend....and we've never met!!

Take care. Thanks so much for taking the time for many posts you have shared.

Annie

Beth, Continuing to keep you and Gary in our thoughts and prayers. So happy to hear you're getting a lot of help with the medications and bath assistance. Sending hugs across the miles! Sue

Beth, yes, being in small towns has it's advantages. It may be a little less scripted, if you will, about how to get the help you need, but the help is there. It sounds like things will be OK this weekend so you can get a day or two off.

It sounds like his kidneys are processing his excess fluids nicely now that they have a place to go through the foley. Good to hear that the meds are helping with the spasms. And, if the other meds are creating confusion or irritability, then it's best to stay off them.

Keep sharing the path, we're here walking it with you.