Dad's Funeral Arrangements

Dad's Obituary

Thursday, January 26th, 2017

Visitation at Baue- Cave Springs, Saint Charles
4pm-8pm

Friday, January 27th, 2017
Our Savior Lutheran Church, 2800 Elm St, Saint Charles
Visitation 10am-11am
Service 11am
Procession to Cemetery (Baue, Cave Springs)
Luncheon at Our Savior to follow

January 21st, 2017

Dad passed away this morning, 1/21/17 at 5:42 am. Myself, Mikayla, Mom, Jim, and Jack were all with him. We will be making final visitation and funeral arrangements in the next day or so.

We had been taking turns staying over night with him. Myself and Mikayla had been sick so Mom stayed several days in a row. At that point, he would sleep during the day and be awake most of the evening and night. He didn't open his eyes much but would pull and tug on the blankets and his shirt. Some nights were rougher than others but we did our best to keep him comfortable, calm, and relaxed.

Last night (Friday the 20th), I was feeling better and was going to stay the night with him. Mom and Mikayla went home between 7 and 8 pm. Jim and I were sitting with Dad and he seemed a little more upset and agitated than normal. We had to request several extra doses of comfort meds with the hopes of getting him to relax. Talking and holding his hand seemed to help some but not enough. The night nurse came in around 10 pm and after looking him over, suggested that we give Mom a call because she did not think he would make it through the night. His skin was "mottling" from the heart not pumping adequately and starting to slow down. This looks like bruising on the skin and progressed as the night went on.

The past few days, he would take several short, shallow breaths followed by moments of apnea which could last anywhere from a few seconds to up to 15 or 20 seconds. That continued until midnight or so then the apnea stopped and he was just taking short, shallow breaths. He was very congested, which is normal. and while there is a medication to help with that, it wasn't strong enough and the nurses had to use a suction machine to attempt to remove some of the fluids. Around 4 am, he was given oxygen. The nurse advised that it wouldn't prolong anything but would hopefully relax him enough so his breathing wasn't as labored. Between that and laying him on his side, he seemed like he was having an easier time breathing.

The nursing home contacted our hospice team and updated them on what was going on. They sent out a nurse and as she entered the room, she looked over at Dad and then looked at Mom and said it was going to be soon. She got her stethoscope and after a few moments said "I can't find a heartbeat." Words I will remember for the rest of my life.

We sat as a family with him until Baue arrived and took care of things from there. Tomorrow we will meet with Baue and make arrangements for the visitation and funeral. His obituary will be on Baue's website and I will post everything on here as well.

Thank you to everyone for your love and support for the past 18 months.

Ice Storm Update

Being stuck at home with this "ice storm" that's coming, I finally have a chance to do some updating. We've been at the nursing home for almost a week now, and let me tell you... we almost left after Day 1. We understood that admissions on the weekends tend to me a little rough, but there was no excusing how rough things went. Dad went almost 24 hours without any medications, meaning he didn't get seizure medication, steroids, or comfort medication. We finally got so fed up with the nursing staff, we contacted our Hospice team who ended up sending a nurse out. Dad was extremely agitated, kicked me out of his room no less than a dozen times because "I was in danger and needed to get out of the way and too naïve to understand". There was really no calming him down and in the middle of all that, he started having seizures. I witnessed at least three and I'm sure he had more than that.

When the on-call hospice nurse arrived, we sat down with her and explained our frustrations and all the problems we were having. She checked in on Dad, then went to talk with the staff and look over his case file. After about two hours, we had the staff educated on what needed to be done, his medicine schedule straightened out, and finally had him resting comfortably. [Side note: if you are ever in the unfortunate position where you need a hospice team, Barnes Jewish Hospice has been absolutely amazing.] After that we decided that we weren't going to leave him alone and someone would start staying over night with him. I stayed Sunday night, Mikayla stayed Monday, Mom on Tuesday, etc. Dad slept all night, despite his roommate yelling about letting chickens out and needing a "diabetes snack" all throughout the night.

Monday things started going better with the nursing staff and we decided to stay where we are at. For the next few days, he'd talk a little while he was awake, have a few drinks of water or ensure, then sleep for a while. His kidneys have been slowly shutting down and his body is retaining more carbon dioxide (or monoxide, whichever one you typically breathe out) which can make him naturally sleep more. He's on a schedule of comfort meds and pain meds and that seems to be allowing him to rest comfortably.

This week there has been periods of time when he'd be very chatty, even if what he was saying didn't really make sense. One night, he said he had to go to Illinois to pick up a mattress and box spring, we had a couple more loads to take to the truck (he wasn't sure where he was going though), and he was trying to build something with a coil. After repeatedly checking on him and reminding him not to pull tubes out, he said "I'm either moving or itching, you don't have to check on me every 5 seconds..!" Apparently I was being a little too attentive.

We did meet with Baue yesterday to start making plans for the inevitable. Overnight, his breathing has gotten more shallow and his breathing rate seems to have decreased. He's not awake very much and the little he does talk, he can barely speak at a whisper. We really don't expect him to hang on past this weekend.

We really appreciate all the visits we've had. Even if Dad doesn't seem to participate in the conversation, we think he can still tell when people are in his room and who is there. We can't thank our family and friends enough for their support.

Respite and the Nursing Home

Dad went into respite care Monday afternoon at Barnes West County. He was transported by ambulance and doesn't really remember the ride (which was probably a good thing, he hates how the ambulance rides). Mom and Dad were both able to get some rest, which was much needed.

Wednesday night, Jim and Jack brought Dad a crab leg dinner and asked for Dad's blessing on a FUTURE marriage (ie: no one is currently engaged) to his daughters. Dad was very excited and even teared up a few times. Mikayla cracked his crab legs for him and he ate around two pounds of crab!! Pastor Arle also stopped by for a visit and we were able to take communion as a family.

Wednesday was the last day great day Dad had. Thursday and Friday he did alright, was still eating but started sleeping a lot more. He's now on a schedule of "comfort meds" to help with agitation, any pain he may have, and to help him relax. We came to the tough realization that we would no longer be able to care for him at home and began looking for a more permanent place for him to stay once respite care ended. He was still eating meals and talking coherently, but there are just some personal care situations we can not handle at home anymore.

This morning he was transported to a nursing home in St. Charles. He was given the comfort meds this morning and then did not wake up for the ambulance ride. He's been sleeping most of the day and is only awake for short periods of time. His breathing has become noisy because of fluids building up and is now on oxygen, although he doesn't seem to like that much either. His speech is also pretty slurred and he's difficult to understand, but he will say a few words now and then. He did drink an ensure and part of an oatmeal pie, then asked for Mom to bring him pudding tomorrow.

One doctor that has been in to see him thought Dad would have around two weeks left. I have no idea which doctor that was though. The hospice nurse that came in this afternoon thinks his organs are starting to shut down and that he probably only has a few days left. Lately he's enjoyed listening to conversations, even if he doesn't fully participate in them.There's been many times his eyes have been closed but then he'll chime in with his two cents about whatever you were talking about. After today, I'm taking leave from work. We are going to slowly start making final arrangements, so that when the time comes, that is one less thing we will have to do. If anyone wants to visit or feels like they need to come say whatever they need to say, please let us know and stop by for a visit.

Hospice & Seizures

A few days after Christmas, we received a call from the doctors office that since Dad has decided to discontinue treatment, the next step would be to go under the care of hospice. At that point nothing had really changed medically, and if he would have continued with chemo, we most likely would not have been referred to hospice.

We had our initial meeting with the hospice social worker this past Friday, December 30th. She came to the house and basically just explained everything that hospice can do and the various services they provide. We learned that they do a lot more than originally thought, including having any necessary medications delivered to the house! The nurse was supposed to come over Saturday to finish getting all their paperwork filled out and take care of the medical side of things.

 We ended up having to call their 24 hour hotline Friday night around 10:30. Dad started having another seizure, very similar to the ones he had in August. He was awake and breathing but wouldn't answer any questions, kept staring off at nothing, and his arm would twitch. The nurse was at the house in roughly an hour or so and we were able to give him medicine to stop the seizures after a few doses. He did a little bit better yesterday, but today was a rough day for him. He's very agitated and confused and most likely still having seizures. He's asked multiple times for his dress military uniform and wants to know what time to be at Baue for his funeral. He also doesn't believe that he's at home and keeps asking when he can go home. According to one of our hospice nurses, the brain can go back to wherever he was during the first seizure or where he was during his first big seizure. Since he had 27 seizures while on the monitoring equipment back in August, we kind of think that is why he thinks he is somewhere else.

Once we can get everything arranged with hospice, we are probably going to do respite care. Basically he will go stay in a local hospital for a few days, still under hospice care, so Mom can get some rest (she hasn't sleep much in several days). It is exactly like going to stay in a hotel but he will have the nurses looking after him and giving him meds, helping with hygiene, etc. Hopefully while he is there, Mom can get fully recharged and we can have hospice bring in some equipment to help being at home easier. We are currently debating on bringing a hospital bed home, just afraid that it will add to the confusion and agitation. Once he is back home, the hospice nurse will come twice a week to check on him and a nurse aide will also come twice a week to help with showers and that kind of stuff. Our goal is for him to be home as long as possible, but sometimes we have to put ourselves first and hopefully the respite care will allow Mom to do just that.

We were able to have a really nice Christmas! On Christmas Eve we went over to my grandparents for the evening and then on Christmas Day, after I got off work the six of us has a great dinner and then opened gifts. Dad was in such a good mood that he was laughing so hard he couldn't talk!!

Huge Update

This is by far the hardest update I've had to write. I meant to update earlier today, but it took a lot more mental preparation for me to write than I thought it would. (And maybe some wine.)

Dad had another MRI this past Monday and had an appointment with Dr. A on Wednesday. The original tumor and necrosis appear to be stable compared to the last MRI that was 3-4 weeks ago. However, the third tumor has grown slightly in just a short amount of time. This change was not enough for the doctors to change any part of his treatment. We also heard back from an independent research company that had requested a portion of Dad's original tumor to run some more tests on it and see if there was any mutations to it that could potentially respond to medications. Unfortunately, there are no drug-able mutations and at this point we have exhausted all possible courses of treatment. The swelling that caused problems shortly after Thanksgiving seems to have stabilized and we are decreasing the amount of steroids he's on. We'll go back and see Dr. A in about 4 weeks.

Dad also came to the decision this week that he is going to stop receiving chemotherapy. This was not an easy decision by any means, but as a family, we are supporting Dad's decision while he's healthy enough to make that decision for himself. It was discussed with his team of doctors who basically said there is no right or wrong option when it comes to stopping or continuing treatment. Sometimes it is better to stop treatment sooner, rather than later, so you can really enjoy what time you have left. Chemotherapy is poison going into your body and if you wait too long before stopping, you can be too sick to enjoy the rest of your life. There is no predicting how fast or how slow the cancer will progress. The third tumor will more than likely continue to affect his eyesight.

Dad is going to remain at home for as long as possible, and as long as we are able to properly care for him. We are continuing with our holiday plans as usual and do not plan on making or discussing any end of life decisions until after the holidays.

On a different note, I never shared our family photo from Thanksgiving on here! We went to my aunt's house (as a family of 6!) and one of my lovely cousins took our photo.

Back at Barnes

Some of you may have saw on Facebook that Dad was back in the hospital. Saturday night Mikayla had to call an ambulance for him because while he was using the bathroom, his legs gave out and Mom was barely able to catch him and prevent him from falling onto the ground. Mikayla and Mom were able to get him into a wheelchair but Mom knew something wasn't right. I was actually at work and went over to Fire/EMS dispatch and called Mikayla and watched the GPS on the ambulance that was en route over there. Medics determined he was stable but decided to transport him to Barnes St. Peters to get checked out. Once at the ER, they treated him for dehydration (he hadn't eaten or drank much that day) and were waiting for lab results to come back and then most likely release him. They decided to do a CT scan just to check everything out which revealed that there was some significant swelling in his brain as well as some bleeding.

At that point, the St. Peters doctors talked to the Big Barnes doctors and decided to transport him downtown between 4 and 5 am on Sunday morning. Being a 911 operator has it's advantages, I was able to let Mom and Kayla know when the ambulance was on it's way to transport him! Most of the day Sunday was just a waiting and observation day with an increase of steroids to try and help the swelling. He did seem to be feeling better by that point.

This morning (Monday), Mom, Mikayla, and I all got up to the hospital around 9:30 am. Dad was very agitated and not like himself at all. Physical therapy was able to get him moving around a little bit and he went from the hospital bed into the recliner with only a little difficulty. He didn't have his cane and being at the hospital, have to move and hold onto things a little bit differently than he would at home. 

 After therapy left, he took a nap and woke up when they came to get him for an MRI. There was some debate over whether or not he was going to be able to take a Xanax before the MRI (he's been taking one before MRI's to help with claustrophobia) due to him being very sleepy. They don't like to give Xanax in those types of cases because it can slow and ultimately stop your breathing. However the doctor did give the OK for him to have it before his MRI. When he got back from the MRI, he seemed much more like himself, was making jokes, not agitated, and was asking for lunch. He finished off some pasta Kayla and I had for lunch and then was asking for sweets and ate some smarties (shockingly, didn't ask for orange sherbert!).

We got the MRI results back fairly quickly and it looks like the original tumor as well as the new "tumor" we've been watching look fairly stable compared to his last MRI, however there looks like there's some inflammation where the necrosis (damaged tissue from radiation) is, or what we refer to as the second spot.  Overall, the swelling and the bleeding have decreased since the CT scan but there is still some minor spots of both. Due to the bleeding, they haven't put him on any blood thinners to prevent blood clots in his legs.

Dad doesn't know this, but unless Dr. Ansstas (the primary oncologist) has something different to say, he will probably be released from the hospital either tomorrow or Wednesday. They said he could either go to another rehab facility place for some extensive physical therapy or if we were comfortable taking him home and doing home health and having a physical therapist come to the house, they were okay with that. Obviously, Dad would prefer to come home so as of right now, that is the plan. We haven't told Dad any of this because he tends to fixate on things and if we say he might come home on Tuesday and they end up keeping him, he'll get agitated and upset. He doesn't have much sense of time anymore and easily gets confused. He might think something that happened six hours ago just happened an hour ago or vice versa. This is his new "normal" though, ever since he had all those seizures back in August.

I think that's everything that happened over the weekend. As usual, keep us in your prayers and if anyone would like to come visit, give Mom a call!!!