Wellness

[CouponQueen]

I came by too for an update. Thinking of you Mistris!

No matter what - you will always know that you were there when he needed you, you advocated for him to the fullest and you also did everything you could to make him comfortable as possible.

Hugs to you!!

[lolakimono]

Mistri-

Just checking in to see how your dad is doing today.

I hope everything is OK on your end.

[fortune]

Mistri, you have my deepest sympathy! You are really a strong person--taking care of your dad both physically and emotionally, dealing with your mother's problems, advocating for your dad, and devoting yourself to these priorities. Most people couldn't surpass your strength and courageousness! You are wise to get away from all of this and pursue your own goals when it's time. You have so much to give to others!!

[Deb1010again]

Hey Mistri, thinking of you... I hope you are OK and your dad is as comfortable as can be.

[mistriTsquirrel]

Thanks, guys. I'm pretty tired, but here is my update...

A lot has happened.

While in the hospital, my father's pulmonary doc and his oncologist's nurse practitioner told him that hospice was his best option. He cried. I cried with him. He told my mom and I that he felt betrayed by his doctors...that they had given up on him. My mom tried to explain things to him in a way that would help him see that they were stuck between a rock and a hard place and they didn't want to harm him...they want him to be comfortable. I don't think he believes that though; I still think he feels betrayed. To add to the sense of betrayal, my father's sisters haven't bothered to fly up to visit, despite my mom offering to pay for their plane tickets, have them stay at my parents house or pay for hotel rooms...whatever they need to get them here. One of his sisters is a school teacher. He doesn't know it, but she had Spring Break last week, and she opted to spend time with her boyfriend instead of coming to visit her dying brother. He has asked for his mom and sisters...but I don't think they will be coming.

My father had a pleural effusion again (draining of pleural fluid) on his right side, and this time he had a drain put in so that the hospice people would be able to drain the fluid for him. It took a few days to get his INR down again for some reason, so they couldn't do the left side until today. After that, he was transferred to the hospice facility to stabilize before he comes home.

Unfortunately, he suffered another stroke during his hospital stay, and he may still have some bleeding in his brain. He grunts or garbles a few words in response to our questions, so we know that he is aware. I spent the day with him, my mom is with him now, and my brother will be with him come morning.

He can no longer eat or drink; he aspirates water if you try to give him any, so we use swabs to keep his mouth moist. Today my brother allowed him to drink from a cup even though I said, "no no no!!!" My father wound up sputtering and--since he has trouble even coughing at this point--the fluid is now gurgling in his chest. I could have strangled my brother, I was so mad!!!! I've spoken at length with my friend who was a hospice nurse for 30 years about things like this, and she warned me that one of the greatest challenges is to get family members to stop trying to feed/hydrate people whose organs are shutting down. After my dad was choking on the water my brother gave him, I cleared out excess water from his mouth and rolled him onto his side. I told my brother "we can't be giving him water straight from a cup like that, because he is aspirating it into his lungs." My brother said, "if he doesn't drink water, he won't be alive much longer," and I said, "well, how much longer do you want him to suffer?" (This was discussed out of earshot of my father, BTW.) He seemed to understand that. I asked him to tell our mother what happened, because she has given my father too much water at a time as well, with the same result. I try to explain to them what my friend and the nurses at the hospice center have advised, but they apparently feel driven to hydrate him. I understand that, and I don't deny him a few swabs of water, but I go slow and I stop when he seems to be accumulating water in his mouth that he cannot swallow. I feel like my mother and brother do not understand that he suffers each time he gets water in his lungs...and that his organs are shutting down...and there's nowhere for the fluid to go.

Later on, I was sitting with my dad, and I saw tears in his eyes. I am not Christian--as I stated before--but my dad is. I asked him if he believes that Jesus Christ is his savior, and he said yes. I told him that the Bible states the need to call upon the lord and ask for salvation, and it will be given. I told him I will speak a prayer for him, and he can say the prayer along with me in his head. I asked the lord to grant him the gift of salvation, to comfort him, and--when the time comes--to welcome him. It was a little awkward for me to start, but I knew I would need to do the speaking, and my dad could think what I was saying. My dad even managed a garbled "amen."

After that, I told my dad that he has changed my life. I told him he has taught me that my life has purpose, that I am capable, and that I'm not a failure. I told him I was sorry that it took his illness to teach me these things, but that he has changed my life, and that he has changed the very core of who I am. I told him that he has taught me how to be brave. I also told him that he doesn't have to worry about me; I will be able to stand on my own two feet.

I blotted away his tears, but I knew he was still upset. A clergy member will be stopping in to visit with him in the morning or afternoon. He cannot express himself very well anymore, so I thought a meeting with a counselor or social worker could be a waste of time...he cannot articulate well anymore, so I thought a chaplain would be more comforting.

I've learned to recognize some of my dad's "sign language," but I still have to ask him very specific questions ("Are you having any pain?" "Are you anxious?" "Is your stomach upset?" "Are you comfortable?" "Are you too warm?" etc.). Once I'm able to figure out what's wrong, I get his nurse (if necessary). It seems to be working out pretty well so far.

However, I know that the end is near. His breathing is irregular. His eyes don't fully close when he sleeps. He can't swallow most of the time. His extremities are very swollen, particularly his left hand for some reason. He cannot pee on his own anymore, so he has a cathetor. His body doesn't regulate temperature well anymore; he may be cold to the touch, and then an hour later, he is burning up and trying to kick off his sheets and blanket. Before I left, he was making growling and gurgling sounds; when I asked him questions, he didn't give me much of a response.

I hope he doesn't die tonight while I'm at home...on the other hand, I don't want him to suffer anymore.

I don't see him making it to the end of the month. I was hoping he would pass away at home, but no one knows if he will live to see his home again.

[lolakimono]

Oh Mistri, I'm sorry for the news. The hospice staff will take good care of him, and see that his final days are pain free. At least you know that he will be "comfortable" and that there will be people around when he passes. We gave my father a stuffed cat, a representation of my kitty, and everyone said that he cuddled that kitty in bed until he passed. It's not uncommon for them to gravitate towards a stuffed animal or favorite quilt as a measure of comfort, even if you think they aren't cognizant of their surroundings. Maybe you can bring him a doggie for his bed. When he died, we sent the stuffed kitty with him for cremation.

[pistolino]

Mistri, I'm sorry, so sorry. Please do not worry that he will die without you there. They pick their time and who is around. If he wants you to see him go, you will be there and if he doesn't, you will not. It's up to him, know that and don't feel bad if you aren't there.

I remember I just talked and talked to my mom, about vacations we took, things we saw, good things that happened when I wasn't living in the same state as her that I'd forgotten about, and of course all the good things about her.

Here is something that was on the brochure we got from hospice and I like to picture this when I think about death:

Gone From My Sight

I am standing upon the seashore.
A ship at my side spreads her white
sails to the morning breeze and starts
for the blue ocean.

She is an object of beauty and strength.
I stand and watch her until at length
she hangs like a speck of white cloud
just where the sea and sky come
to mingle with each other.

Then, someone at my side says;

"There, she is gone!"

"Gone where?"

Gone from my sight. That is all.

She is just as large in mast and hull
and spar as she was when she left my side
and she is just as able to bear her
load of living freight to her destined port.
Her diminished size is in me, not in her.

And just at the moment when someone
at my side says, "There, she is gone!"
There are other eyes watching her coming,
and other voices ready to take up the glad
shout;

"Here she comes!"

And that is dying.

by Henry Van Dyke, a 19th Century clergyman, educator, poet, and religious writer

[Deb1010again]

Hi Mistri - I'm searching for the right words but can not find them. You are such a devoted compassionate and empathetic person. Your dad is so lucky to have you. I am continually struck by how you are able to keep your wits about you and really be there not only for your dad, but every other member of your family. You are one strong lady.

I hope your dad doesn't suffer too much. He has really been thru it all. I like Pistolino's idea of the stuffed kitty. Since he loved his dog so much.

Take good care and try to remember the good times as you reflect on his life. This is something we all go through at one time or another. But few are as dedicated as you.

Please continue to keep us posted as you feel appropriate.

[OC FRESH]

It's commendable how you're handling everything despite what little support from family you have. You may feel bad how you've dealt with recent episodes while your dad has been in the hospital and home but BY GOD you're there showing your true character.

I wish you peace and strength for what you've been going through.

[SUSIE IN ANAHEIM]

Hello, I am very sorry for your depression. I have suffered for most of my life with it. I can offer a few suggestions. A pet is a companion. If you are able to care for one, please get one. If you find a pet at the pound, you will be saving their life. Also, I feed feral cats and put out nuts for squirrels each day. I have to get dressed in the morning to go outside to do this. I have animals who need my help this way. Also the library is good. Look up on the internet the 100 greatest books ever written, and this will give you a start on what books to check out. I do crafts making scarfs for military at Operation Gratitude. And make fleece hats easy for chemo patients. Or you could try a craft that appeals to you. Walking is great. Volunteer at a hospital. I made a true friend by doing that. And try to have at least once a week get together with people. Have something to look forward to. Best wishes.