May 8  Wednesday  Still cold and raining. He wants up early so we can get exercises done.I do the ROM before his BMP. The change makes it seem a little faster. Once he is up he gets on the computer, the in the stander. While he is back on the computer I clean up the rest of the stuff from traveling. I start to think about all the things I will need to start doing in the other rooms. Net able will be installed soon, I need to clear the wall space.

I get a confirmation regarding his urology appointment on the 9th, make sure I have the stones to show the doctor. By afternoon the sun is out enough to go outside and enjoy it. His friend comes by to hang out for the evening. It was a more productive day overall, though he still feels tired from the trip.

He is back in bed and ready to sleep by 10:30. Early day tomorrow.

May 9  Thursday  I do a shortened ROM program, get him up, fed, washed and in the van by 9:45. His appointment is at 10:30. We get to the office, the only disabled parking spot is being crowded out by another van taking up 2 spots. I unload him, park the van.

We get inside the office, fill out a shitload of papers and wait. We are seeing a PA and there are about 4 people ahead of us. After about 20 minutes the receptionist calls me up.

“We don’t accept your secondary insurance. You cannot be seen today.”

“Secondary? What about primary?” I ask making sure I am hearing her correctly.

She tells me that since they won;t accept his secondary medical managed care insurance, he cannot be seen at all. I am wondering just how much the PA costs. She says if we change the medical (which we are, it takes 2 months) or pay cash, he can be seen. I begin to get pissed that we came all this way for nothing. I ask her if we have just wasted our entire morning.

She is apologetic but I don’t care. While Colin is trying to get us to leave, I am having a tantrum. I ask if they care he has already been to the ER or if they even understand SCI medicine. Then I remind myself, they don’t care. This place is more concerned about secondary insurance than treating a patient. Well fuck them. I leave still yelling profanities and swear we will never return.

We load up, I let his home care nurse know we are leaving town. She says she will be there around 3.

We get home, have some food, relax in the sun until it disappears again. The nurse arrives. She evaluates him and tells us she has spoken to the primary doctor’s office. She calls up the results of his CT scan, which shows stones in the kidneys on the 3rd of April. Maybe he passed them all by the time the ER doctor looked at his kidneys. There was still no pulmonary test results. She also said she was discharging him from home care. He would not be seeing her as a nurse anymore. We say our sad goodbyes when she leaves.

He is grumpy now, so we hang out. I try to get him to relax by dissing the medical care system. If you are in the hospital, things get done but take forever. Once you are discharged  you are your own advocate, few will listen to you, contact information is secretive. The entire system is set up to be nothing but gaping holes designed for patients to get lost and fall through. My goal is to get him out of the system with minimal specialist support.  But I need to maneuver through a few more areas before we can burn the bridges to pulmonary medicine, trauma, radiology and internal medicine. So much to do.

His friend comes by again, which cheers him up. His foot massager has arrived, which has heat and vibration modes. Just what his neurologist mentioned. We have a late dinner, the  get him in bed around 10. We are all sleeping by 11.

May 10  Friday  I let him sleep till 9, do his ROM before the BMP again. We take our time getting up. We have started working on the muscles under his arm. He is working on finding them, I zap them a bit to help him out.

By the time he is up it is getting warm outside. We go hang out in the shade then go inside and get him in the stander. He is up for an hour this time, then his feet are being vibrated again. His friend comes by for dinner.  We have a good meal, they stream a movie, my husband and I relax.

His friend leaves by 10:30, we are all in bed by midnight.

May 11  Saturday  After giving him his morning meds I let him sleep till 10. My husband has some workers coming to do the yard work and I try to update the blog. I am over a week behind, still. Mornings are when I try to get some time in, there just hasn’t been much. I manage to get to the 7th of May.

I get some laundry done, start organizing the storage bedroom so we can move stuff away from the wall. By the time I get Colin up, it is scorching outside. The house was closed at 7 so it is still cool inside. We do his hair, give him a quick bath. He is up by 11:30 with a shortened ROM after his friend calls and says let’s go have sushi. Just cannot pass that up.

I get a grocery list together, let my husband know we will also be getting Mother’s day gifts then we go to town. By the time we get back, the workers are gone, the yard is mowed, the trees are all trimmed and we have a massive pile of tree limbs that will need to be cut up for kindling. Work for another day. We still have nearly 2 full oak tree trunks to split and stack.

We have a late dinner of grilled pork chops. My husband and I have some wine, Colin and his friend are sampling different micro brews. His friend leaves about 10:30, Colin is in bed by 11, lights out by 11:30.

The evenings I still have a hard time thinking about my mom. My husband is always around to comfort me. Even though I feel weaker since her passing, he tells me this has made me stronger. I just wish I could feel that. Sure would help.

May 12 Mother’s Day  I wake up grumpy. I let Colin sleep till 9 then we do his BMP. He is up by noon, has a quick lunch.

We are going to my in laws new home for a Mother’s Day BBQ. We have a nice bouquet and gift certificate for my mother in law, a plant for her mother in law. We get into the sizzling Fresno heat by 2.

Their house has stairs for the entrance so we hang out in the shade under the covered patio. I brought some wine, Colin is having a beer. I have a tearful conversation with my step dad. I miss my mom.

Colin has lots of water also, then a heavy BQ meal. By about 3:30 he is not feeling well. The heat is getting to him. We douse him with water and ice. We move to the front car port, they turn on the front sprinklers and the mist cools everyone off. It takes about 40 minutes for him to feel better. It is then I remember I forgot his meds. They are due at 5.

We hang out for a little longer then have to leave to get home by 7. Our nephew comes along to get some studying done. We drive home. I give Colin his meds 2 hours late. He does not feel good at all. I spoke briefly with his brother after Ian got off work. Colin is like a zombie, just wants to watch a movie and be on Facebook.

I pump him full of water, help him relax until he is ready for bed around 10:30. He gets his night meds a bit early at 11:15.

I finally get in bed around midnight still missing my mom, wishing Mother’s Day wasn’t so hard this year.

May 1  Wednesday  Meds at 7:30, BMP then exercises. I finish the state paperwork during his BM.  I get him up, wash his face and teeth then get him on Facebook while I get us ready to head to town. I make him lunch then we leave after I clean up.

Pretty uneventful visit. We asked if his pulmonary tests have been put into his records. The doctor says he will check, but never does once he has to sigh the papers from the state. We go back in 2 months.

We go to the grocery store then head home. He gets in the stander for 45 minutes then I make dinner.  He is on the computer again as I get laundry finished so we can pack tomorrow.

I keep thinking about my mom. I really expect her to be there. It’s so weird to think she won’t be. I cannot seem to get my head around that.

He streams a movie while I make sure all the paperwork is done, the reservations are complete, then talk with my sister. I have Colin back in bed by 10, lights out at 10:45.

May 2  Thursday.  Dentist at 11 am for both of us. Just a cleaning. We are finished by 11:45. We both have good teeth, no problems. 6 month appointment is made. I am thinking I have no idea how I am going to get there in 6 months, with him.  I will be back at work. Maybe I will have to take the day off or something. I will worry about it then.

We go have lunch, then groceries, then home.  His friend is going to come by later which will give me a chance to pack.

Once home, he gets on Facebook, then gets some text from another friend. Soon we have  a couple friends hanging out, I am packing and making dinner. My husband gets home just before dinner is ready.

After we eat I finish packing, clean the kitchen. I get things ready to load in the van. The first night we only have 1 room so my husband and I will sleep on the floor. We pack out sleeping bags and pads.

I talk to my sister again after I’m done.

Colin’s friend leaves about 9:30, I get him in bed, meds finished, lights out by 10:30

May 3 Friday  I have him awake, coffee and meds given, BMP started by 7:30 am. We finish around 8:30 then I get him up. While he does Facetime with his father, my husband and I load the van. By 11 am we are ready to go.

I go out to start the van. It starts, then dies. Repeatedly.  Another symptom of the poor motherboard soldering. After researching we found the solder points crack in many of these models. We could easily take a day, pull out the panel, the motherboard and re solder the cracked points. But not today.

I call my mom’s house, tell her husband we are having issues. We will figure something out. My husband finds a wheelchair van place that will rent us a van for $1000 plus gas. We will need to load Colin in the car, go get the van, come back up, load it up then leave. It would be 4 pm before we left on a 12 hr drive.

My mom’s service is at 1 pm tomorrow. After pouting and complaining I go try the van again. It starts, stays on. I try it 3 more times. Works fine. I get out, go inside, go back out, try again. It starts fine. WTF.

We discuss it and agree, with my insistence, to take our chances with our van. I let people in Oregon know what we are going to do and we have a couple of plans in case we are stranded.  By now everyone is hungry so I make lunch.

After lunch I clean up, we load up and are driving away at 12:45.

We need to stop every 90 minutes or so to allow Colin a pressure relief.  The cassette adapter as well as the charger both stopped working after 1 day. These were not cheap items. But they don’t work anymore. $40 down the drain.

Colin has his hand adapter and is on his phone using Facebook, watching videos and listening to music. I lay music on my phone, chat with my husband, look for Starbucks along the way.

We make to Mt. Shasta and eat what I packed in the ice chest. Sandwiches, apples, yogurt, juice, hummus and pita chips.

We get to the motel at 12:30. I get Colin in bed, legs elevated since we did not bring his DVT pressure cuffs, roll out the sleeping bags and crash by 1:30.  He wakes around 3 with bad leg sensations. I try to get him more comfortable, but it is all different. Eventually he goes back to sleep.

May 4  Saturday.  My husband has to help me prop him around 7:30 for meds. I need to remember a wedge on the next trip.

I get Colin up, dressed for the service, shower and dress my self for breakfast  My sister and brother in law are on their way over, my younger sister is close to where we are going for breakfast. We all get together and eat. My sister tells me how bad mom was at the end.  I guess I should be thankful I did not see her but I am wracked with guilt for not being by her side.

Once breakfast is over, we have enough time to go change then head to the church. We all arrive around 12:30. I did not like the hearse out front. There is a prayer meeting with the casket, then we go into the chapel.

The service is just over 2 hours, most of it taken by people coming up to say something about my mom. Sometimes I was ok with listening, sometimes I was not. Sometimes I got angry that she left me, then I was angry with myself for being selfish. She was in serious pain, she was ready to go. I guess she felt I was ok, even though I don’t think so. I got up and said as much, I don’t know what I am going to do without her.

After the service, we went out to her home on the rouge river. I went through the house with my step dad taking hospital supplies he did not need that we did. I looked through her jewelry, picked out an opal necklace he had made for her. I did not want to think about her not being here anymore. I kept expecting her to show up. This was not right.

We all hung out outside, by the river. Our cousin was there, although his mom and sister’s could not make it. There were many grand kids and great grand kids from her husband’s side. I remember when they were all little bity kids. Now they are all grown with their own children. My mom had so many grandchildren and great grandchildren. She loved that. I miss her by the river.  I selfishly think she should be here.

We head out before it gets dark, we all head to dinner. My nephew comes by too. After dinner we head to the motel room and visit more. My sister and niece stay with us in the rooms, our cousin in his truck, my older sister and her husband head home.

It was not easy getting him ready for bed in a regular mattress. It is not slippery, there are no rails to keep him from falling. I get him into the center, prop his feet on pillows to minimize the swelling. then I realize I cannot raise the head to give him his meds. My husband help me lift him, we get his medications administered and finally we can all go to bed.

He calls me a couple times to adjust him but otherwise sleeps through the night.

May 5  Sunday  My husband and I get him his 7 am meds then we all go back to sleep. By 9 I get my sister, take coffee orders to go fill. We pick up our cousin outside, go fill the order and return.

By 10 I have Colin up, we have all had coffee and are waiting for my older sister and her husband. We meet at the corner restaurant for breakfast. After we eat our cousin leaves to return home, our husbands head to a movie, we leave Colin and his cousin at the motel with their electronics then head out to our mother’s home and her grieving husband.

We visit, then go through the house looking at her things. Some items are old family stuff. I keep expecting her to be in the next room, or arrive home from the store. It seems so lonely here now, this big house on the Rouge River. It isn’t the same without her.

We visit out on their bedroom balcony, being treated to stories from her husband’s near 90 years of living. It bothers me that he will be all by himself in this big house. It just feels wrong.

We can tell he is getting tired so we have some pie with him then leave him to rest. I don’t know when I will get a chance to see him again and part of me is afraid to leave.

We let everyone know we are on our way back. Our husbands are not having a beer and we are trying to coordinate dinner. They have to leave the pub as minors are not allowed, our niece is only 17.

We get back to the motel, gather everyone up, meet at the local Mexican place (it is Cinco de Mayo). As soon as we get there, my niece is gone, picked up by a friend wearing my jeans. We are all unhappy with her departure. We had our husbands leave the pub instead of meeting them there because she was not permitted in. Teenagers… we ordered margaritas to get over it.

After dinner we went back to the motel rooms, tried to Facetime with Ian but the connection was really poor.  We showed off the items we inherited. Items I brought were things I remembered her wearing as a little kid or something I knew she cherished. Some I will let the boys choose and keep. I still can’t believe she is really gone.

My brother in law has work in the morning so they leave by 8. I send my sister into the other room so we can do his BMP. By 9 he is in bed and we give him his night meds at 10. I prop his feet higher as they are starting to swell. We have to get up as early as possible to get on the road. We are in bed by 10:30.

May 6  Monday  Travel day. We get Colin his 7 am meds then begin packing/loading. We are finished by 9:30, with him up and ready. We meet my sister for breakfast and are on the road by 11. It’s a cloudy day.

We do the same thing as the trip up. Stop for pressure relief, coffee, food. His feet are swelling more so we prop his feet on the ice chest on pillows. As we travel south we watch the lighting strikes to the east, right over our house. We expect to get home by 10:30, which we do. It is pouring rain when we get there. We get Colin out, my husband and our nephew unload the van while I get him in bed. We have all tracked in mud, water and sand. They  put everything in the family room. We will deal with it tomorrow.

I get Colin into his pressure cuffs and settled in bed, meds given about 11. My husband and I are exhausted, collapsing into bed.

The trip is over, we made it. I have memorials of my mother and keepsakes but not her.

May 7  Tuesday  A day of rest. I do not hurry him. We do his BMP at his leisure. It is cold, raining so we cannot g outside. We do all his exercises, get him on his computer.

We get a call from his primary’s office. we have a Urology appointment on Thursday. The state case worker keeps bugging me about the paper work so I spend and hour scanning them, then printing so my husband can mail the 18 pages and get her off my back.

He does not feel up to getting in the stander. He is still exhausted from the drive. We take it easy.  His friend is coming over, I make a good dinner for us all. It is amazing how much one can miss broccoli and chicken when on the road.

His friend leaves by 8:30, Colin is in bed falling asleep by 9:30. I am in bed by 10:30.

I cry some more, missing my mom. It sinks in a bit more everyday. Her pictures are a reminder, hanging on the family picture wall. I miss her. I am sorry for all the improvements Colin makes that she will miss. I wish she didn’t have to go.