6/14/14
Yesterday I stayed up here in Augusta, painting and relaxing with my critters. No riding. It cleared up for part of the day, at least it stopped raining. The chiropractor came and adjusted both horses, during which time a bear crossed the next property. I didn’t get a shot of it. Wildflower noticed it first, big time. Both horses seemed to enjoy their adjustments. He didn’t spend as much time on each horse as Dr. Bamford does but at least they seemed pleased with his work.

Around 4:30 a big thunderstorm came in. Tommy showed a little nervousness, it was pretty loud. At 5 I left him in the trailer and went about 45 minutes away to meet my sister for dinner in Chester, which is 15 minutes from where my pre marriage 200 year old house on 10 acres in the woods was. It is such a pretty country area. I loved living there. Liza’s ex husband recommended a restaurant and it was really great. I had soft shell crabs. I don’t think I’ve had them since I lived in NJ 25 years ago. I even had 2 glasses of wine and did not get a headache or dizzy. It was a really nice break to what’s been going on. We talked about mom stuff a little, but not the whole time. As I was driving back to Augusta the sky opened up again, but I knew we were going to get a round 2, Kate had warned me.

This morning I fed everyone, played fetch with Tommy, filled the house water tank that had gone dry at the end of my shower last night, folded up the hay tarp from the truck (I am out of hay and using Kate’s now), ate, and intended on working on my painting but my heart isn’t in it. At 11 I leave to go to Liza’s. We are bringing Dana (mom’s kitty) with us to visit mom around 1. Liza suggests a regular visit time, so mom has something to look forward to, but I am not sure she is time aware enough or remembers when we come. But it sounds like a good plan anyway.

Things we need to face:
Talking to Johnny about this. Dad has agreed to tell him but I am sure he will be calling us. We both have a lot of issues and difficulty in dealing with Johnny. He has schizophrenia and altho is on meds and doing “well” we both have a super hard time talking to him. He calls our parents daily. He has finally quit calling me. And if he comes to see mom he will need a place to stay which will be Liza’s apartment.
We know mom wants to cremated and the ashes taken to Shawano, WI where her parents are buried and there is a plot for her and her sister there, but what to do with the ashes? What about a memorial service for her friends? In PA or NJ? And who tells her sister, who has serious dementia and is in a nursing home in WI. Neither of us ever speak to her.
If she comes home to die, we need to prep her home. There is no bathing on the first floor and she is in a bed most of the time, a wheelchair rarely. I will stay there. A friend of mine found a pasture nearby, I need to call them. I think I can handle caring for mom. My understanding is that hospice comes a few hours a day (or week?). I am not clear on the details or what I will have to face, but I imagine it will be more than I expect.
Mom needs to be told what is going on about ending treatment, going home to die, hospice care… whether she understands it or not. I do not want to do anything “behind her back”. This will be hard, she doesn’t think there is anything wrong with her at times. She doesn’t seem to understand any of her problems at all. She thinks she broke her leg, then that she has a problem with her foot. Doesn’t realize she is wearing a diaper most of the time, or that she has kidney failure or cancer…she said “everyone my age has cancer” with the wave of her hand, dismissing it. And does not understand the seriousness of her dementia “I know in the past sometimes I have sometimes forgot things…” which I take to mean I’m ok, and normal, don’t infer that I am not.

I am digging a funk for myself. Need to move. Go walk the dog.

So I took Tommy to the same trail and walked about an hour. Its real pretty and lush, following a fast moving stream. But I kept finding myself staring at the ground as I walked.

I met Liza at the nursing home, I tried a different route which was actually longer so forget that one. Its amazing how many gps route choices there are. There are so many highways, none of them going straight where I need to go tho. And so many cars on the road, everyone here speeds too. By the end of the day, I remember how I really hated driving here. Liza was there already with mom’s cat Dana, in the Garden Room. I expected an emotional reunion but it didn’t materialize. Dana is not a lap cat but was very good and stayed on the table in front of mom most of the time, altho she was probably there because she has bonded with Liza now. Mom I don’t think even reached out to pet her once. She looked lovingly at her tho. Mom is on Oxycodiene now, they said she was crying about pain, bedsore pain. Today she grimmaced a few times in pain, saying it was her lower back and her abdomen. But didn’t cry. She was very confused in her conversation. Asked if Bob still wanted me to go to all those society gala things (no, we are separated now), why is she in Puerto Rico to learn to walk (she is in New Jersey), she saw dad earlier today there (no he is in Florida), stuff like that interspersed with general conversation. And she was distracted and would get concerned about every noise, and that is one noisy place, the intercom on the phone on the wall, the ac system, other patients making odd kind of noises, aides talking in the hall. And she talked about all the chaos of her day earlier. I never was sure what that was all about. I asked her if she knew why she went to dialysis, No. I said to clean your blood, she said oh yeah. I asked if she knew she was in a nursing home. No she is in a place to learn to walk. (sometimes she calls it a rebate place, meaning rehab I think) I wanted to ask if she understood each of her physical issues but couldn’t. We left in separate cars and I spent some time crying before I pulled out. When I got back (I went another different just as bad route) I sat down and cried very hard for a long time. Liza and I texted back and forth our thoughts a lot. We do that often lately. I’m not sure what hit me so hard today. Maybe it was the look in mom’s eyes, which were bright and alive, and she looked so pretty to me. Maybe its because I want so much to get her lucid input on the decisions about treatments. Maybe we are wrong, maybe she can recover. Multiple Myoloma causes kidney failure, I had thought it was 2 different issues. The first round of chemo has not helped the kidneys tho. The dialysis is just a temporary fix to stay alive. The progressing confusion or dementia could be related to the MM. My big question is are either reverse-able if the cancer is put in remission by chemo? Because if they are not, then what’s the point?

When Kate asked me to go to Ed’s to go on a trail ride tomorrow, I said yes. I hate to leave everything to my sister, but I am not functioning right when I feel like this, it will be a Sunday so nothing will really happen and I need to re-boot my brain. A trail ride should help with that. Tommy can come along too finally. I have hated leaving him tied for so long every day. Its a 2-1/2 to 3 hour drive round trip and I visit for 1-1/2 hours plus sometimes spend a few hours talking with Liza before and after. So 5-6 hours tied. I hate that.

6/15/14
What a gorgeous day. It is maybe 70, breezy, sunny and just perfect for a ride. Liza agreed to come late this afternoon, we can try to Skype dad for Father’s day, eat and she will sleep over in the trailer with me.

Kate gave me her vet’s number so I can do those vaccinations I was told about in Maryland and I will renew my coggins now even tho its still good till August, it takes time to get the paper back. We have all eaten and I have 3 hours till we load up to go on our ride at Ed’s. Tommy can come with us which is wonderful! Did I say that already? Boy I do love this dog. I hope WF doesn’t give me any trouble loading into a strange trailer. Its not her first time on this trip, but those were stock trailers. This is a 2 horse straight load one. If she does, I’ll take Dreamy.

Well it was a great day and the ride was beautiful, WF was wonderful even tho I brought my old snaffle bit by mistake (not her new tom thumb). The Father’s day Skype call worked great and dad enjoyed the technological miracle of talking to his two daughters so far away with video. The party at Ed’s was very cool, tons of food and he and his wife have such a huge assortment of animals (all running loose for the most part), horses, chickens, pigeons, pigs, dogs, cats and they all had BABIES! It was so cool. But there was one problem on an otherwise perfect day. Tommy ran off after a deer and did not return. Someone found him miles away and called my cell (its on his tag), so I got him back, but I don’t think I can trail ride with him any more. He had on his shock collar but it is possible that the battery went dead, or the range is just not far enough (supposed to be 400 yards, but we were in the woods). But his Deer Hunter instinct is incredibly strong and I can’t risk loosing him. He would of crossed a highway following that deer. He was found on a road.

6/17/14
I feel like I have been thru a wringer washing machine. I have a pain between my eyes, my feet are on fire and I am too tired to hold myself up. This has been building. Today I laid down at my sister’s place and fell into a very deep sleep, not knowing where I was when she woke me up to go to the new facility that mom was moving into. We were meeting her ambulance at Peggy’s House, or the Center for Hope, I am still confused on the exact name. It is 1/4 mile from my sister’s apartment in Scotch Plains. We toured it yesterday and after discussing it in my truck in the parking lot, Liza went back in and gave them a deposit. We drove down to mom’s townhouse in Yardley, PA, had dinner and slept over there (Tommy slept between us in mom’s bed, Liza said he has 2 women, lol), then picking out things to make the room (which is very nice all on its own), more like her home. We brought pictures to hang on the walls, her bedding and towels, more clothes to wear, a photo album from when we were kids and things like that. We picked up wine at Trader Joe’s and flowers. Mom seemed pleased, but it turned out that for what ever reason it wasn’t magical to her. (I’ve done this before and been let down by the recipient’s reaction several times in my life, so I was kind of prepared for a let down). She had a few hours of lucidity. No where near perfect, but much better than it has been since I have been here. It was a good opportunity to discuss her situation and options. Not really her options since she has dementia and Liza has power of attorney, but she still thinks they are her options. We explained the choices that are possible. Why can’t I go home and have an aide? You can’t walk, you need 24 hour aide and you will run out of money. This gets nowhere. Eventually Liza said if you go home you will die. This is true since neither of us could handle ongoing treatment and care 24/7 in her home (assuming that the treatments even worked).

She looked me in the eye and said I choose suicide. I told her that was not legal. She said she didn’t give a shit (one of her favorite expressions). She said she had the pills at home. She is referring to a bottle of phenabaritol pills that she somehow got. I now wonder if that is one of the reasons she keeps saying she wants to go home. We can’t find the bottle to dispose of it. One of her repeated stories over the years is about an uncle or cousin who, returning from a war “shell shocked” (or knowing our family history more likely schizophrenic break) got a similar bottle of pills from her father who was a dentist. He used them to end his misery.

She goes in and out of lucidity during the course of the conversation but I think she finally understands how close to death she is. Somehow I want confirmation on this. And that she doesn’t want to live as she is for a long time. That recovery and return to her previous life will not happen. I can not play a charade that it will if that is the case. If…we still haven’t met with the oncologist, the final doc we want to hear from before we decide to continue or stop treatments. He cancelled our appointment today. Maybe tomorrow he can fit us in or we will see him at her chemo appointment on Thursday. We know from the renal doc that her kidneys have not improved from the 1st round of chemo and he was skeptical that it would in the first place, and have had support from other docs and specialists that she will not get better and hospice is the ethical thing to do. (There are so many doctors involved it is hard for me to keep them straight, but Liza has communications all under control thank God.) But we want to hear it from the oncologist too. And I want her to somehow understand.

We moved her out of the nursing home because it was crowded, noisy, chaotic and depressing. She was not getting much personal compassionate attention. This new place is small and the nurse/aide ratio is much better. You can order your own food (and it is delicious, important to someone who will not eat like mom), private room and bathroom, library, salon, living rooms, its incredibly nice. But I don’t think she likes it. She sees it as giving up on learning to walk. But she can do physical therapy and learn to walk again here if we decide to do that, I’m sure it can be arranged. But that is pointless if she is going to stop treatment and die. It is all so overwhelming…for all of us.

If she decides to stop treatment, she can stay here or go to her home. If she goes home, I will move in with her for the 3 weeks or so and have hospice care come in a few hours a day. And Liza will be around most of the time too. But neither my sister nor I can commit to doing this level of care and continuing dialysis and chemo treatment longterm. We know our limits.

Home…its in the name of her new place, it means her townhouse in PA, it means our old Burns family home with all its member living under one roof, it means my Rittwage family home in CA, it means Liza’s apartment, it means my horse trailer. I never know which home she will think of when the word is used. Sometimes she thinks she is in Puerto Rico, the Jersey shore, a police station…today it was Santa Fe. I wrack my brain trying to figure out what she misunderstood to think the things she thinks. Right after talking about my dad being in stage 5 cancer she asks is he dating. She brings him up often. They have been divorced since I was a senior in college, 1976.

I drove back to Augusta and am in my trailer. This is my home for now and it is comforting to be here. I am thinking of my mom sleeping in her new home and I wonder if she remembers everything we talked about today. I kind of hope not, and that she is sleeping peacefully.

6/18/14
The horse water troth sprung a leak and when I saw Kate she asked me in to her house. I’ve been in there chatting some time…about a variety of things like horse treatment stuff, cancer drugs, pot, e-cigarettes, solar and wind power… She called the riding stable down the street and I spoke to Melissa. Its $15 a day to use their indoor and outdoor arenas and groomed small loop trails. I’ll check it out another day, its hot and humid and a storm may be coming in this afternoon. Kate always has a smile on her face, its so nice to be around her. She gave me some eggs and I’m going to eat breakfast now. I’ll go down to see mom and sleep over at Liza’s tonight. I’m bringing Tommy (and his bark collar and Tucker’s therapy dog vest), my state paintings and my laptop. I’d like to get a book to read when mom sleeps and one to try reading aloud to her. And maybe read some of my blog to her, the parts about camping, and show her some of my photos from my trip. Maybe go thru the photo album we brought from her home too. We’ll see how it goes. And I’ll get groceries when coming back here, I’m running low on most stuff now. Kate will feed the horses, she has been doing it when I’m gone at meal time, so nice. Not sure how to repay her, but I will.

6/19/14
Where do I begin to retell the last 36 hours. It felt like a year. I am so wiped out. I drove down yesterday. As I entered Scotch Plains I got a call from the director. Mom refused to go to dialysis and they sent the ambulance away. I said that’s ok with me. They called Liza too. We met at Peggy’s House (this is what it says over the door so that’s what we are calling it). Mom was pretty lucid. She was convinced that if she stopped chemo she would die. It became evident that she thought it would happen within 24 hours. The director spoke to her and confirmed that she wanted hospice, no chemo or dialysis. Liza signed the papers. It was a tough day. Later on she was quite confused again and said you can’t take everything I say literally, with the wave of a hand. Johnny, my brother, called and she spoke to him. He evidently was quizzing her on why she was quitting treatment, why she is in hospice. He started off with is Liza there. I got more and more aggitated. Mom was so confused. I asked to speak to him and went in the other room to give him a piece of reality. He didn’t say a word.

I slept at Liza’s. She had trapped two wild cats to be neutered and they were doing their post op rest in her bathroom. One was sooo sweet. But I do not need another animal now. Neither does Liza, she has 5 cats already. They will be released back into the woods whence they came.

Mom was not lucid at all today. We had lunch with her, altho she barely ate as usual, sticking out her tongue at the thought of eating. An old friend of her’s came by to visit…from the grandma group, they call themselves. They have been meeting for lunch on Wednesdays for many years. She is very nice. And she has lukemia now. Mom has a lot of friends, nice long friendships. She is lucky. But for me, it is very tiring and hard to be around her for long periods of time. Liza & I have discussed keeping our visits shorter before and it came up again today…for our own sanity. I don’t think I can do this full time 24/7 in mom’s house as I had said I would be willing to do (with Liza’s help and a hospice visit). I’m not well enough myself to take this on. This is as much as I can handle right now.

6/20/14
One of mom’s friends is, with good intentions, disturbing us with texts about “not giving up on mom”. This is very stressful especially to Liza who is the power of attorney. If someone wants to step up to the plate and take over that’s one thing, but monday morning quarterbacks drive me to insanity. My husband did this. People who start sentences with “you should” are trying to control you. They think they are helping I suppose, but it is very disturbing to the recipient. My therapist said to never say should when speaking to yourself. Say instead, it would be helpful to me if…or something like that. Should implies guilt. People SHOULD not throw the word around.

should |SHo͝od|
modalverb (3rd sing. should)
1 used to indicate obligation, duty, or correctness, typically when criticizing someone’s actions: he should have been careful | I think we should trust our people more | you shouldn’t have gone.
• indicating a desirable or expected state: by now students should be able to read with a large degree of independence.
• used to give or ask advice or suggestions: you should go back to bed | what should I wear?
• (I should) used to give advice: I should hold out if I were you.
2 used to indicate what is probable: $348 million should be enough to buy him out | the bus should arrive in a few minutes.
3 formal expressing the conditional mood.
• (in the first person) indicating the consequence of an imagined event: if I were to obey my first impulse, I should spend my days writing letters.
• referring to a possible event or situation: if you should change your mind, I’ll be at the hotel | should anyone arrive late, admission is likely to be refused.
4 used in a clause with “that” after a main clause describing feelings: it is astonishing that we should find violence here.
5 used in a clause with “that” expressing purpose: in order that training should be effective it must be planned systematically.
6 (in the first person) expressing a polite request or acceptance: we should be grateful for your advice.
7 (in the first person) expressing a conjecture or hope: he’ll have a sore head, I should imagine | “It won’t happen again.” “I should hope not.”
8 used to emphasize to a listener how striking an event is or was: you should have seen Marge’s face.
• (who/what should —— but) emphasizing how surprising an event was: I was in this store when who should I see across the street but Toby.
ORIGIN Old English sceolde: past of shall.
usage: As with shall and will, there is confusion about when to use should and would. The traditional rule is that should is used with first person pronouns ( I and we), as in I said I should be late, and would is used with second and third persons ( you, he, she, it, they), as in you didn’t say you would be late. In practice, however, would is normally used instead of should in reported speech and conditional clauses: I said I would be late; if we had known, we would have invited her. In spoken and informal contexts, the issue rarely arises, since the distinction is obscured by the use of the contracted forms I’d, we’d, etc. In modern English, uses of should are dominated by the senses relating to obligation (for which would cannot be substituted), as in you should go out more often, and for related emphatic uses, as in you should have seen her face!

6/22/14
Yesterday Tracy came to visit mom. Today she spoke to my children on the phone and Skype. Last night Liza came back to Augusta with me and slept over. Today I rode Dreamy over to the stable down the street (what a gorgeous facility) and on their trails (pretty but disappointingly short). Liza ran to the grocery store for me while I rode (really nice). I can’t think of what else. I feel like I am just floating along a river, with my mom on this bizarre journey of dying and loosing your mind. Riding was enormously helpful, so was sleeping in my trailer, it is my HOME now, it brings me comfort. I’ve crossed that line finally.

6/25/14

The vet here, Dr Paul, came to do the mare’s coggins papers and give them their potomic horse fever vaccinations, they will get a booster in 2 weeks. They had no signs of distress from the vaccine the next day.

Liza & I went with Kate to Ed’s to watch the kids practice for the horse show Saturday at the fairgrounds down the road. She asked if I was coming to the horse show, she is obviously proud of the kids and her 2 horses she is lending out to be used. Maybe, but probably not. I don’t really enjoy horse shows any more.

Two nights ago we went to get mom’s phone for the night (she had called 911 again with a kidnap story). As we entered her room she said Turn off the light and GO. So we did.
Yesterday we went to visit in the am with a dvd player for her. She slept till noon so we left. I think she slept most of the day.

I called Dr. Baker to give him an update on mom. I saw him for 13 years when I lived here. My mom saw him for even longer and his father before that. He is an Reichian orgonomy psychiatrist. It was nice to hear his voice. He said mom had called and made an appointment and didn’t show up and he had assumed a page had turned.

Liza has been so good about calling her friends back and keeping them posted. I could not do that, telling the story patiently over and over, answering the same questions over and over. I guess most of that is over tho, we are just waiting now. Mom seems at peace and it is not so difficult for us because of that. She is not spiritual at all but does not seem afraid or anxious. Just in the beginning of hospice, she had assumed it would be a quick death, shutting her eyes and saying why is it taking so long. When we told her it would take 3 weeks, she started to almost cry.

6/26/14
Yesterday Liza & I went for a short hike up to Sunrise Mountain in the state park on the Appalacian trail with Tommy. The view was pretty but a bit obscured from the overcast day. Afterwards we stopped at Gyp’s for an early supper, I had 2 beers, a lot for me. We met a group of 3 hikers out on the lakefront porch. They had started in GA in March and were planning on getting to Maine by August. They have done something like 1300 miles so far…One was probably my age, the other 2 were young bucks. We talked with the one young guy from SD for a while about trails in CA that he wants to go see, SD which he said there were none except in the western part of the state, and his impression of NJ (favorable). Its an old biker bar with a pool table and they played my old music from the 60’s and 70’s. They welcome hikers since the Appalachian trail crosses nearby. As we ate our burgers we watched a cute family of little ducks out on the lake. We have stayed in Augusta 2 nights now, which means we did not see mom one day at all. This is a first since I have gotten here 2-1/2 weeks ago. Yesterday she was getting her hair done by a friend that came in to do it for her. We figured that was probably enough for one day for her now. She had wanted a perm but that didn’t happen, I’m not surprised. She barely made it thru a haircut he said. She was in and out of it and got very weak and tired towards the end. He came up on his birthday to do this as a thank you for her being in his life. So sweet.

In looking at the guest book we saw that she has had a lot of visitors. Some left notes and flowers but mom has never told us about any of them. And she has yet to call anyone back that has called, saying she is too weak or that she can’t tell them everything that has happened, even tho we have told them everything already.

Liza left a bit ago to go back down. And I was going to ride or hike or something, but feel the gentle tug as well. I might as well face it, I am not driven to doing anything really. I feel so blah. But when I am down there I feel blah too. It is pointless to watch her sleep. We’ve tried watching her favorite shows with her, but she doesn’t really watch them and will start talking about stuff so we can’t really follow any story plot either. And listening to her talk is pretty exhausting. I keep trying to figure out what she is trying to say, or why she is saying it, or what has she misunderstood or mixed up.

I walked the dogs in the woods with Kate, she is a good soul.

I have so little energy. I guess I’m depressed.

6/27/14
One day blends into the next, this is like an eternal limbo. I saw mom yesterday afternoon, dropped by to say good morning today, then came back for 4 more hours. At first I had a hard time staying awake. Her friend Bobbi came by. Bobbi is the friend that had questioned our hospice decision before. She is like the old tv show detective Columbo, who never outright accuses anyone, just nags nags nags till he drives everyone nuts. She wanted to talk to me alone. I know she means well, but people need to understand that unless they want to take over 24/7 then they should shut up. At least get accurate medical information, anyone can google that stuff. Don’t tell me what a relative or friend of a friend had to say about a disease someone they knew had; there are many varieties of all cancers, Dialysis is not a cure, its a life sustaining treatment. Dementia does not reverse itself. Broken hips take 6-8 weeks to heal in a young healthy person, much longer (if ever) when you have cancer and no kidney function and are older. Multiple Myoloma is treated differently when you are young, they use stem sell therapy. It works well. Not so when you are old. Dark blotches on the skin are from the cancer, they are not bruises from being roughly handled. You can’t turn a person in bed every two hours with a broken hip, especially if they turn themselves back to flat when you leave the room. I can not monitor care 24/7, I have to trust the staff. Dementia is very complicated, lucidity changes by the hour, by the minute. They do not remember what you said 5 minutes ago, or yesterday, or if they saw you earlier. My mom is in very bad shape. This is not living. Why can’t she go home, I will drive her down there…BUT WILL YOU LIVE AND CARE FOR HER 24/7? OR PAY FOR IT? Then shut up! You are visiting often, but for an hour at a time, try it for 4-8 hours as we have been doing. The idea of doing it 24/7 is no longer an act of incredible mercy to me, but self-destructive.

6/28/14
Altho I firmly believe everything I wrote yesterday is true, the self doubt I have been living with the last few years gnaws away at me. I am in an awful place. The biggest doubt is about the dementia not reversing itself. Dr Solomon said it goes up and down but does not return to normal. Dr Marandi agreed. Every doctor involved said this is the right ethical thing to do. Including the oncologist. Including her psychiatrist. The kidney doctor said they kidneys will not return to normal function and dialysis would be life long. Not one of the medical team involved tried to disuade us. So why do I doubt myself because one friend questions it? This is a part of me that I can’t stand.

I remember when I was in college and dragging a rather large painted canvas from my studio to class for a critique. A drunk bum on the street made a derogatory comment about the painting and I was crushed. I don’t remember what he said exactly or even which painting it was. But I remember being totally crushed. I am way too sensitive to criticism.

On the suggestion of Liza I checked out meet up around here for trail riding. The only group here and in Augusta is the Watchung Stables. This is not a state for avid trail riding. There is just so little land to ride on. There are so many people living here. The traffic is amazing, all day long. It’s like LA. I can not live here.

I’m going to walk with Tommy this morning, or take a yoga class in Westfield, visit mom and drive back up to the horses. I want to ride tomorrow. I am worried about having the where withall to continue my SHLEP after this is all over, whenever that may be. I am getting anxious about that time. So is Liza. She said she will either follow me or miss me horribly. I feel the same way. Its that way with sisters I guess. We were never terribly close until lately. I could imagine living on a farm with her but I could never live here. And I know she wants to stay close by her son in Brooklyn. I wish I could be close to my children. I can not afford southern CA. It tears me up. I haven’t seen my sons in 6 months now. And I miss them and worry about them. I haven’t seen Emily since I was in Texas right after Easter. And I really miss her so much. God please watch over my children for me. I feel so powerless.

7/1/14
Mom has shingles now on her right shoulder. It started about a week ago but the doctor just diagnosed it today and prescribed an anti viral. Up until then the nurses and aides said it was her declining immune system. I thought it was from the dialysis catheter (which she actually pulled out of herself yesterday). She has been messing with the area all week. It covers her shoulder front and back, bright red with pockets of big blisters, mostly crusted over now. She grabs her neck in distress (shooting pain?). It is highly contagious and dangerous to anyone that is pregnant or in chemo treatment as one of her friends is. I was putting surgical gloves filled with water in the fridge and changing them out as they warmed up on her. I asked the nurse about doing this in my absence and she said no, they don’t have the staff to do this. (??)

In the last 3 days…I was up in Augusta for 2 days, I trailered with Kate to a rail to trail ride, she rode Dreamy…Liza came up and the 3 of us went to a Ribs and Rock concert at the fairgrounds to see the Outlaws and George Thoroughgood. It was fun but I wasn’t really into the music. There were a lot of people there, mostly older folks like us. We pulled Kate’s little camper and set up chairs and an umbrella to hang there but eventually we made our way over to the concert thinking it would be more fun with the crowd, food and band there. The next day Liza and I went to a Catholic church place that has the stations of the cross outside. It appears that a family started this project around their home a long time ago. So you take a walk thru the woods on a grassy path to the stone stations (that look a bit like large grave markers). There is a chapel back there too. I forget the name, but Mary is in it. I thought it fitting, this is my mom’s name. Then I took Tommy for a 2 hour hike on the appalacian trail, then drove down to Scotch Plains again. This back and forth is not fun. I don’t know how long I can keep this up. When I am with mom, I keep wanting to leave (especially if I am just watching her sleep, which is often. Talking with her is usually depressing too, she is so confused. She doesn’t know where we are most of the time and she is always planning on going to a show, or out to dinner, or back home. All of which are impossible. Today it was about our flight plans. Keep in mind that I have seen my mom more this past month than I have in the last 40 years. I could only be with her in small doses.) When I am at Liza’s apartment I don’t have much to do and I think about leaving for Augusta. When I am in Augusta I think I should be down seeing mom. And I think I am starting to get depressed. Like when I was in FL for 4 months. I kept trying to find things to do to keep me “up” but it didn’t really work. When I was riding I thought I should be with dad. When I was with dad I thought I should be riding, then I thought I should be looking for a job, or a home, or a man, I started spiraling downward…

I told Liza I may not be able to stay until the end. 8 weeks like this sounds like torture to me now. Its partly the arrangement, the 1-1/2 hour drive back and forth, not riding, not painting, mom in such bad shape physically and mentally (its so sad, but the repetitive conversations are starting to drive me crazy…I need to get up and go, you can’t walk, where should we go out to dinner, do you want to see a show, you can’t walk, all this talk about going out to dinner all the time, yet she never eats anything, 2 bites and she’s done. I know its a desire for a social life but it still drives me crazy.). When I said I would stay, I was under the impression that it would take 3 weeks. And I felt stronger when I arrived in NJ. I was on a roll. I have been here 3 weeks already. I hate to leave my sister with this burden. And I hate to leave my mom, I feel guilty about everything. But I feel the urge to get on with my SHLEP. It’s in the 90’s today, its going to be so hot camping in new england. My original plan was that I would be in Maine by now, it would be cooler there now. And the sooner I move on, the sooner I am done, the sooner I settle down somewhere and try to rekindle my relationships with my children some how. The big bad bear at the end of the trail (where, how will I pay for it, when will this divorce get a move on). Well that and my father dying which is inevitable as well. I have too many things on my plate still. Too many things I don’t seem to have any control over what so ever. Let go, let God. I am having trouble doing this lately.

I am rambling. Back to the last few days. Well today Liza and I walked Tommy at Tomaques Park. She got some hiking boots and shorts so she must like coming with us. We ended up talking to a woman who told us her sad story, her husband was a gambler who lost 4 of their houses gambling. He died 3 months ago. When she said that she was smiling. Everyone has a sad story. Everyone tells me. Its so odd, what is it about me that this happens over and over? Is everyone in the world unhappy or experiencing a tragedy of some sort? Is there any hope for being happy? Long term? If not, then what is the point of going on?

7/3/14
It is 3pm, 91 degrees in my trailer. The outlet here can not handle my ac and blows the breaker constantly so I just quit trying to cool it down. My horses are covered with flies, more than I have ever seen. There are no trails that I can ride to and its too fucking hot to ride anyway. Another storm is rolling in supposedly. I hate being in NJ. I am depressed. I miss my kids so much I can’t stand it. I have 2 blisters on my arm so I took 2 Valtrex. Mom has shingles, I think I said that here already. And I think I have caught it. Kate has been gone again today and I am supposed to care for her horses, chickens and dogs again. I am so hot and tired.

I spent most of the day crying. It stormed pretty badly tonight. But at least it cooled off. There was water in the trailer when I returned from running errands. What a mess. I don’t think I have shingles, you can’t catch it. I “punched it up” as my dad says. If you had chicken pox it stays in your system and can reappear later when your immune system is compromised from chemo or stress of some kind. If you have shingles you can transmit chicken pox to someone but not shingles. Strange. I am relieved I think.

I saw a website listing life stresses. I score very high: Divorce (in the works for 1-1/2 years now), deaths in close family or changes in health of close family (2 gravely ill parents), change in residence (out of the family home then 10 months later out of the apartment and into the trailer, so do I count that once or twice?), change in financial status (huge change here), change in living conditions (no explanation needed), child leaving home (Emily started college last fall), change in social activities (living in a trailer at campgrounds is certainly different than my life in La Canada, CA).

I fall into the range that says; Score of 300+: “at risk of illness”…well I guess that entitles me to cry all day once in a while.

Mom asked me the other day if Bill still makes me go to all those fancy gala things. No mom we are divorced.

She asked me if I wear anything besides those–?–shorts. No mom I only have a few things with me in the trailer. She said oh its good to travel light.

She asked if I would like to go to the theater (thinking we were in London). Yes mom, but I can’t afford to. Guess Kathy’s getting to the bottom of her purse (I’ve never heard that one before).

She asked if I had my flight set. Does dad know you are homeless.

7/5/14
I haven’t seen mom awake in days. She is on morphine now. I don’t think she is eating or drinking. She took 2 ice chips. This is awful to watch.

7/7/14 Monday
My brother finally made it down to see mom. Johnny has suffered from mental illness since he was 21. His life was snatched away from him. It took tremendous courage for him to get here. My mom was waiting for him. He arrived in the afternoon. At 12:30 am my mom took her last breath. Liza, Johnny and I were in her room with her. I broke down sobbing on her shoulder. Nurses came into the room, they must of heard me. Liza called our dad but I couldn’t speak yet. Eventually I calmed down enough to call my children to tell them and I lost control again speaking the words. Grandma has died.

I miss my children so much it has formed a deep ache inside me. I want to go home, but I don’t have a home. The effort to produce a home seems monumental, just breathing requires so much effort now. I now know that I must be near to them, I can’t settle far away. And I must be in a state that allows assisted suicide. I can not put my children thru what I have just gone thru. And what I am facing to do again with my father.

By most standards my mom had a “good death”. She stopped treatments 2-1/2 weeks ago. But that is still too long to suffer for anyone. Even with pain meds. That is just my opinion. It was just about 2 months ago that my mom moved into assisted living. She was there one day, fell, broke her hip and her life fell apart quickly. The cancer and kidney failure were discovered with pre-surgery blood work. She started chemo and dialysis, which was hell for her. I will never accept chemo or dialysis for myself after what I have witnessed this past year with my parents. I have told my children this. I will do an advanced directive to help guide them, a living will is way too vague for a loved one to go by. It is not fair to make a loved one answer these questions. Most people, namely me, are not qualified medically to answer whether to treat or not and with what. Especially when you are emotionally distraught with the impending death of a loved one. Especially when you are unstable to begin with. I have been treading on rocky ground for 2 years now, I am in no condition to be relied upon for such important matters. Thank God mom was lucid enough to make the decision.

My mom had me at 19. I was not planned, but she got married and had me, and loved me my whole life, even when I was unloveable. And now she is gone, she is in heaven, her pain is gone, her mind is back. I wish I could go with her. She was the best mom. Everyone loved my mom. She was a real people person. And she was so beautiful. I suppose I am changed, I will never get over loosing her. I will miss her every day.

Today we all went to the funeral home and then the lawyer who drew up her will back in the 80’s. There are so many things to do after someone dies. It is overwhelming, thank God there are two of us to do it all. I think it is designed to keep the survivors busy so they don’t go insane with grief.