...random thoughts, opinions and secrets on children... aging... cooking... crafts... nature...divorce...second chances...
and whatever else I deem curious...
~Copyright 2017. Hootie~

Thursday, October 26, 2006

West Nile victim...Unbelievable...

Last Friday my sister received a phone call from the hospital Art was in...They wanted to put him back on a ventilator. My sister said no. She's just the messenger. On the Wednesday before that I was with my mom in the hospital (different hospital - for her) and we talked about how bad Art was. Carol was with us. Carol and I were talking and mom was withdrawn again. She heard us talking and wanted to know what we were talking about. We told her how bad Art was and asked her what she thought we should do for him. It was her wish to NOT have him surviving on machines. So, when my sister got the phone call...She was just the messenger.

By Friday evening Art was not doing very well. My sister (and a third cousin) were the only ones who could be with our Step-dad. By Saturday morning my brother arrived and then me that night. The plan was that on Friday all the meds, etc. Would be stopped for Art. He would be given morphine for his comfort. Once his breathing was down to a certain rate the O2 he was receiving would be stopped and he would be allowed to let his body give in to the disease.

Saturday was spent waiting for his breathing to get to that lower level. The nursing staff had a shift change at 7 pm. Our new nurse didn't like our decision and she had the attitude of "not on my shift". She did everything in her power to disobey our wishes. She gave our step-dad Tylenol for his fever when we stepped out of his room so he could be changed. She told us it was not right for us to "Let his brain fry." We asked her if she understood our whole situation. She said she did know about our mom. She tried to single out our sister, have her leave the room so she could privately talk to her, Eileen wouldn't go. She did not give our step-dad his morphine at the right times. He did seem to be suffering...Not our intent. She kept saying she wasn't clear on what the orders were and the topper was that in the middle of the night she called the doctor at home to have him clarify (1:30 in the morning). We weren't with her when she called the doctor, so we don't know what she said. She did come back and say the doctor said our step-dad should remain on the O2 through the night.

No sleep, frayed nerves and her attitude made us all feel between a rock and a hard place. We started counting down the hours until the shift change and hoping she wasn't doing a double shift.

Our nurse from the day before came back. She wasn't suppose to be with us, but after she checked on us, she decided to be with us. She wasn't in a good mood when she realized what had transpired. Did I mention, she has had four years of Hospice background? She was an angel.

On Sunday, we were back to waiting for Art's breathing to reach a lowered rate. By 2 in the afternoon we were at that point. He was allowed to breath on his own - without O2, that was the last artificial means still hooked up to him keeping him alive. (He was on a feeding tube, but that was not keeping him alive.) About three hours later Art peacefully passed. We were with him, holding his hands and talking to him. I am sorry our mom couldn't be with him, but I am glad we could be there for him and each other.

58 years old. West Nile. Not a good thing. He was unresponsive for five weeks. He had a fever of 104 (down to 101-ish with meds.) for five weeks. Trach, feeding tube, catheter, bowel bag. Swelling of his body - his hand and arms looked like they would burst for the retention of fluids.

We buried him yesterday.

Unbelievable. Last April I never would have believed you if you told me what we were going to go through this year. I would have laughed and said, "yeah, right". When mom was diagnosed with her brain cancer I would have thought we'd be heading to the cemetery for her, not Art next.

I am glad he is a peace and I wish no one else ever had to go through this. But, for those who do have to go through this, may they be blessed with an angel nurse like our Paula.

Thursday, October 19, 2006

Dying sucks

I just got home last night from quick trip up north.

Mom is withdrawn. She won't engage in conversations. She won't look at me. She'll tell me she loves me when I say it first.

She's in the hospital right now and due to be released this morning.

She's so in her own thoughts it's very tough to be with her. I felt almost invisible.

I felt like I was trying to be there for mom and for grandma. At least grandma was genuinely happy to hug me.

I know this cancer and dying are the reasons for mom's behavior. It still sucks.

Tuesday, October 10, 2006

A "living" funeral...a celebration of life.

I went back up north on Friday, yet again. When I got there a nurse from Hospice was with mom. Someone from Hospice had been out earlier in the day to evaluate things. The nurse who came back was meeting with my sister and I to tell us what mom does and doesn't qualify for. Mom seems to be doing okay in her current situation. The health assistant we hired, Follie, can handle things right now. The hospice nurse asked mom if she wanted a catheter yet. Mom said no. She can't hold her urine at all, but I realize this is a dignity/last stage thing going on with mom. She asked me if my kids know she wears diapers. I told her yes, but we call them depends, not diapers. The Hospice nurse also was able to get mom more nausea meds. Mom now has a patch behind her ear - in addition to her pills she takes every 6 hours. The Hospice nurse asked if mom wanted a hospital bed - she said yes. On Saturday it arrived and we have mom set up in the living room. She's more involved with what is happening during the day. At least she can see what's going on and watch TV.

Mom can barely walk. In fact, standing is hard for her to do. She can't use her left foot/leg at all. When we get her to stand up it is so hard to get her to turn around so she can sit in the wheelchair. Mom signed forms for no CPR and to not be resuscitated, when those times come.

The Hospice nurse also gave us a booklet on what to expect during these next final months. Mom is definitely in withdraw. Friday night she wouldn't talk to Eileen and me nor would she look at us. Eileen kept pressing her for what she was thinking about and she wouldn't answer. I told them I thought I knew what she was thinking about. Mom looked at me with a sort of look that said, no you don't. I asked her if she wanted to hear my thoughts but told her they were brutally honest. She nodded yes. I told them I thought mom was scared to die and leave Eileen. Mom's tears confirmed this for me before she nodded yes once again. It was getting late. I was suppose to be the one staying with mom, but I could tell she really needed her baby. Eileen said she was going to head to mom's house to sleep for the night. I told my sister that what mom really needed was for her to cuddle with her. Again mom had tears and she held Eileen tight. As I was kicked out of the room my throat was dry and I couldn't swallow. Total rejection as a child. My relationship has never been like my sister's with my mom. Did it hurt? Hell yes. Do I realize the entire dynamics of the situation? Of course. It still hurts.

I had trouble falling asleep out on the couch. I woke up both times Follie woke up - I heard her door open as she went to take care of mom. I went back and helped anyway. It is after all still my mom.

On Saturday my sister had to leave by 5 am. At that time I was welcomed back into mom's bed. Her new bed arrived at about 9. After it was set up and made we were able to get mom into it. Now she can be more comfortable with her head up and down at the press of a button. She can look out the back windows at the leaves changing color and the squirrels playing in the trees. She can see the TV and control the remote! She can be near grandma who fiddles a lot with nothing in the kitchen.

At about noon Follie and I got mom into the bathtub - she sits on a chair in there - and she had a bath. What a task! I had to physically stand in the tub and hold her naked body as I helped her out of the tub when she was done. This might have been her last bath in the tub. She's just too hard to move around and she can't help us at all.

That afternoon my sister, her husband and young son arrived. My sister and I took mom and Follie up to see Art. What a mistake that was. He is much worse than I had imagined. Any doctor who tells my sister that he can pull out of this and be okay is out right lying to her. I think Art will permanently be this way, but that is just my opinion. What you see when you see him is a shell of an unresponsive person. He has had a fever again (off and on) of near 103. He has a trach, a feeding tube, a catheter and bowel bag. The room smells of feces. The nurse on duty said they did get him to open his eyes when they called his name and squeeze their hand just slightly, earlier in the day. In personthe nurse admitted that to rouse him you have to talk really, really loud right in his ear. The other day a nurse told me, "well, he does have some brain damage and some swelling, but he's just taking a few antibiotics and mostly meds. to control his seizures. " I thought the swelling was in his brain. He might have some there, but his hands are really swollen too. He has those pressure socks on his legs to keep his circulation working. As for the brain damage? No doctor has said anything about that yet. I am sure the nurse is correct.

Eileen was pissed because she hadn't heard from a doctor on Art in over a week. She asked the nurse to have a doctor call her on her cell. She got a call late Sunday afternoon, but she didn't say what the doctor said because we were with mom at the time. She gave me a look though. On Saturday she had said she was worried the doctors were going to tell her this is as good as it is going to get for Art. I told her I think that is what indeed they will say. Her look kind of confirmed that, but she still hasn't officially said anything. I think this has reached the point of "Too much" for my sister to deal with. She seems to be taking a few breaths right now to keep her head above water. Eileen commented to other family members that she is waiting to have a meeting with a social worker and a doctor to discuss Art's long term care and prognosis.

Another sad part of Saturday night was the fact that mom wouldn't look at Art. She wouldn't talk to him and only touched his hand once when we pushed her. It was horribly painfull to watch. Eileen commented that it may in fact be the last time they see each other and they couldn't even say a proper goodbye. Hopefully they were connecting somehow that we were unaware of.

Grandma's house has fleas. I had brought up some carpet spray and did the carpet once Grams went to bed Friday night. I was able to vacuum in the morning. Her bedding really needs to be washed. I know she is insulted that we all keep pestering her about how things are. I tried to play it off as the cat and living in the woods. Both things are true. Better house cleaning wouldn't hurt, but it's not the cause of this problem. I did treat her cat last weekend.

I spoke to Grandma last night. She said the Hospice nurse was out and checked on mom. She also told me the hospice nurse told her that once this cancer gets to mom's spine she will just stop breathing. And the nurse did tell Grams this is a very fast growing cancer. I know this may be the reality of things, but does Grandma really need all this information!!!!!!!!! Why can't she hear this information when we can be there to give her a hug!

Grandma was getting ready to take her trash down and I told her Follie could help her if she wanted. Grams was feeling argumentative and said, I don't think she'd do that. I reminded her Follie is there to help mom and do light housework. Grandma said she didn't want to be critical but...She doesn't think she, Follie, likes to do housework. I told grams that I would talk to Follie for her if she wanted and Grams went a little berserk. She started to panic that if I said anything to Follie she may not take good care of mom. I told Grams I was just worried about her too and she told me she's lived a long life and things are fine for her. Basically she's ready to go. Grams said mom should have a lot of years left and since she doesn't Grams doesn't want anything to interfere with Mom's care quality. Grandma asked me not to say anything to anyone about this - obviously I am not keeping that promise. I won't say anything to our uncles or aunt, but I did tell my sister about what seems to be happening.

On Saturday, when U.Joe was there, he asked me to go get gas for him for the mower for next week. I did not go get gas. The lazy bum can drive the 2 miles to the gas station himself. My time up north is meant to be spent sitting with my dying mom. I did hear Joe telling Grams about the "home" near him that he wants grandma to come and live in. He said he's going to be getting her a brochure and send his siblings one too. Personally I think he's putting too much pressure on Grams. What she needs is support for what she's going through right now, not plans for her future. I don't think he realizes that taking care of mom is Grandma's reason to live right now. Also, A.Tammy called Grams on Sunday - just before the celebration. She said to grams, "what party? We didn't know about it". I told grandma that she was feeding her a line that EVERYONE knew about it - no invitations were sent out, it was all by word of mouth and e-mail and that we had just talked to Joe on Saturday about it. UNBELIEVABLE!!!!!

A Celebration of Life on Sunday.
Why do you invite people to come see a person who is dying?

The answers are for closure, to spread love and hope. To be reminded of your blessings and what a blessing you are and have been. To smile a bit, to cry, to support. To take pictures.

Last week my sister and I decided we needed to have a party to celebrate mom. Eileen made a phone call to just the right person who reserved a hall - free of charge for us for a few hours and took care of getting refreshments provided too. Dad had been a volunteer fireman over 2o years ago when he died. Mom had been a member of the Ladies Fire auxiliary for as long as I can recall - at least the past 30 years. The current president of the auxiliary knows what is going on and was able to offer us the fire house and had the other ladies make the food. Blessing! Someone else put together a power point presentation honoring mom and all she has done for the firemen and the community. It was awesome. How do you thank others for the gifts of love they gave us that day?

I had brought paper, pens, markers, tissues and hand sanitizer up for us to use. We had people record their memories for us to read to mom over the next few weeks. Eileen got the place together - bringing memorabilia: quilts mom made and a ton of pictures.

I had the job of getting mom together. I put make-up on her and a wig. We got her into a nice outfit. Grams, Follie, Mom and I arrived fashionably late. Mom really didn't want to go especially as the event drew closer. I think she was scared she might throw up in front of everyone. But, Mom seemed to enjoy herself - especially the food. My husband asked me during the event if we needed to watch what she's eating. Mom is after all a diabetic too. The good news is, we don't. She can have whatever her heart desires. Mom truly looked beautiful. My children have seen her funky Mohawk-do and my daughter's, "Grandma you look beautiful!" was extremely sincere.

The celebration was to last for three hours. Mom only made it for about 1 1/2 hours. My husband took her back to grandma's while we all stayed to wrap things up. When we returned to grandma's an hour later mom was extremely tired and snoozing in her new bed. She woke a bit and we all told her we had to leave. I am very glad we did this for her and for us. She may not have been at the right "stage" in this process of dying for what we threw at her, but given what this cancer will do to her in the next few weeks or even days, it was right.

When I talked to her yesterday morning mom was still sounding very tired. I think that is just how things are now with this cancer. By the end of our three minute conversation she was asking me weird questions...Where did I sleep last night? I am not sure who she thought I was by then in our conversation.

I called her today on her cell and she didn't answer at first. She called me back and it took her a long time to say hello. I could hear the TV in the back ground. I think she was distracted by what was on the tube. It sounds like she's not sleeping through the night anymore, but she hasn't been for the last month of my visits. It also sounds like even with the new nausea meds she is still getting sick, more than ever actually. Is this what the cancer does?

I will not be going back up north this next weekend. I feel guilty that my life is continuing as normal. I missed a lot with my own children last weekend. I need a weekend here. I have decided that unless things up north change drastically, I will be heading up in two weeks. I wonder how quickly and much mom will change by then. This whole think really stinks.

Cancer sucks.

Tuesday, October 03, 2006

Unbelievable...The roller coaster keeps adding turns

Unbelievable. I don't even know what else to say.

On Sept 17th, my step dad, who is 58, suffered a stroke. Actually, several strokes we now know. He fell down a small flight of stairs and laid at the bottom for over 20 hours before he was found. When they get him into ICU they discover he not only has suffered several strokes, he also has an arotic aneurysm AND an infection in his brain, along with a 103-104 degree fever...He ends up having West Nile, could this be the infection and fever? The doctors don't know. He's been in ICU since then and on Friday, Sept 29th he was moved to a more private facility. He has been mom's main caregiver.

On Sept 27th, mom gets the news of her MRI results. It isn't good. The cancer is back. It has jumped to the other side of her brain and is growning backwards too. There is nothing more the doctors can do. She's been given 3-5 months to live.

On Sept 28th, mom has a seizure. She takes a trip to the ER, they up her seizure meds.

She's very scared of dying. She's worried she doesn't have faith in God.

Over the weekend we try to surround her with family. She's very nervous. Her body is having trouble, it doesn't do what she needs it to do these days. Walking is very tough. She wears Depends all the time. She's very tired. She doesn't know that Art doesn't know about her cancer being back.

On Sunday, Oct. 1, she develops a slight fever of 100. Her throat is sore.

On Monday, Oct. 2, She gets more anxiety med. She also goes to PT. The can't do PT, her left foot drags and doesn't work like it should. Her PT is a friend of hers and will start making house calls.

Tuesday, Art's fever is back. It's at 102.4. They have been giving him Tylenol and icing him down. I talk to mom and she's sounding tired. I told her I called to check on Art and she asks how he is. I don't tell her the latest. I just told her he's about the same.

This is real life. It feels so surreal.

87 year old Grandma seems the best of the lot. But she's really sad about her daughter dying. One minute she says she's not ready to let her go yet. The next minute she tells my mom they should go together.


This Sunday my sister and I have been quickly working on having a celebration party for our mom - a living funeral if you will. I wonder is mom will be mentally with it for that.

I am ready to get off this roller coaster and go back to my old life.