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.
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