Comfort Care

**** This post started January 29, 2010****

Today I went to visit Grandpa. His sister Mary was there with her daughter Melissa. As soon as they went down to get some food the doctor came in with the nurse.

I knew something was up when they shut the door. He informed us that Grandpa's kidneys were not getting any better and were in fact getting worse. We talked through the options and Grandpa decided it was time to go. They will give him morphine orally and by IV as needed. They will no longer check his blood sugars or give him anything that would make him uncomfortable.

I cried as they talked, not because of anything other than I was afraid he would die alone.

I signed the papers for him to allow them to let him die a peaceful death filled with love and family.

This is not the "easy" way out or the selfish way out, but it is what he wants, so it is what he will get.

I took my oldest home and made the necessary calls and then headed back up to spend some time with him.

As I came into the hospital, my aunt, his sister, was leaving. She was taking the first night shift and would be back.

I came back to his room and there was a dramatic change to his room and to him. There were no more machines and no more interruptions. He was sleeping peacefully in his bed as my cousin sat and looked at old pictures. The room smelled of peppermint and the staff was compassionate as they entered. The entire hospital had transformed into what he wanted it to be.

The history channel is playing in the background... and he is sleeping comfortably.

On Sunday, January 30, 2011, I got up and went to work. It was tough to get up, but I made it in. Grandpa would be proud of me. My aunt called when she was ready to leave to see if someone would relieve her, there was no one. Around 1pm my biological father and step mom came up to see him.

I received a call as they walked in, telling me he looked comfortable and chubby. I explained that this was due to the kidney failure and his body was retaining fluids. I felt like they were accusing me of making the wrong choice. It brings back memories of being blamed for everything that happened. I am not afraid to make the tough choices, and with that brings questions.

As soon as I got off work I went up to be with him, planning on spending the night. I walked into a room full of people. All the love that was being shown for such an amazing man was heart warming.

I love this man so much that it hurts to see him in any pain at all.

His brother flew up to be with him, his brother's daughter was here with her oldest. My aunt was here with her son. My biological father and my step mom was here with their youngest son. My sister's youngest son and his father were here. They were here to say goodbye to man who gave his all to everyone around him. His only crime was that he cared too much for everyone else, and not enough for himself.

I watched as my aunt and her son leaned over him and said a prayer, their good byes, and their I love yous.

I know he can hear them, I can see it on his face. He has cried a few times at the acts of kindness, but his body can long produce the tears that it used to.

This is the time that we give back to him. I will do my best to be here to watch him take his last breath. I do realize that I have to work, that I have four children, and that the rest of life does not stop for one man's death.

Tonight, I have sat here and worked on my homework, while watching the man that has cared for me for the majority of my life, slip away. It is an honor to be able to be here with him and he goes to be with my grandmother, they can finally enjoy their time together. When my journey is done, I know they will be there waiting for me.

"The News" that no one wants to hear

Yesterday, January 27, 2011, I took half a day off from work, as I was laying on the couch resting with the cat, I got a phone call. A kidney specialist had just seen Grandpa and called to let me know that the news was not good.
She was a very caring and nice doctor who even said she hates to have these talks over the phone.

Basically, his kidneys are failing him. Back in June 2010 he was hospitalized because his kidneys were failing, so this was not the first time. There are a few options they are looking at for why his kidneys could be failing, but if they cannot find a reason and reverse it, then he would need dialysis. Grandpa and I have already discussed this in the past and he is not willing to even consider dialysis. The doctor did say that she would agree with this decision.

I asked the question that would be on anyone's mind, how long can he live with failed kidneys and no dialysis? The answer was about 1 week. I was not expecting this news, although it was not unfathomable to think he could go at any moment. For the first time since this has started back in June, I cried. I cried off and on for an hour, and then I cried some more.

I opted to take the girls up to the hospital to see him more time, in case he got bad really fast. I didn't want to tell the younger two what was going on, but they are pretty perceptive and asked if Grandpa was dying.

So, at bedtime we talked and cried and discussed what it means to die, and when it will happen. Sometimes it is easier to talk about ahead of time, but other times it would be easier if I could just give them answers.

These talks bring in religious views, and what we do believe. I was raised to believe there was a God, but never worshiped. I have raised my girls in the church. Up until this last year, when I started working Sundays, we were at church more than half the year. They find comfort in knowing that Grandpa will be in heaven with God and watching over us. I found comfort in it as we talked about it last night.

Just as my evening was winding down and I was going to get my homework done, my husband called. It turns out he was having an allergic reaction to something he ate or drank at work. I ended up calling my oldest and having her come back and spend the night so I could take him to the ER.

You know you have been in the ER too much when they recognize you, especially a busy ER.

Today, January 28, 2011, Grandpa signed the will. This has been years in the making, and as he is laying on his death bed, we finally get him to sign the papers that give me the power to make sure that things are handled the way he wants them.

Next steps include making phone calls to let all the family know what is going on. I did call my uncle, who lives with Grandpa. He was up visiting at the time the doctor visited so I thought he knew and I just wanted to make sure. He ended up calling my birth father, and confusing the entire situation.

My sister, who had been caring for Grandpa, has not gone to see him during this current hospitalization. She saw him once in the first week, never at the skilled nursing facility, and once during the second hospitalization.

I am a little surprised at those who had claimed to care so much for this man, have not made an appearance up there.

Today he had visitors from work, and it was nice for him to see them. By the time I got up there he was pretty tired and really needed to rest.

Tomorrow I will go see him. I have another nearly child free day.

Tonight, I will rest and remember the man who has been my father for so many years.

A Day Off

Today I took a day off from visiting Grandpa. I did feel a lot of guilt, but at the same time I needed to take some time with the girls and to heal myself.

I woke up definitely sick, and it was rough for me to make it through the day today.

My younger two girls take dance, and today was ballet and tap for the 9 year old. This generally means that I rush from work to dance with her in tow, and then spend 1.5 hours hanging out and entertaining the 6 year old. Today, instead of running around, we came back home and I took a nap. I was too tired to do much of anything else.

After dance we went to dinner and played a game of checkers. It was nice to sit and relax a little with the girls and teach them a new game. They were both welcomed learning strategies for playing checkers. It was a lot of fun to watch them work out the strategies in their heads.

When we came home I ran them a bath and let them play in the tub for awhile. They really enjoyed it and it was a nice quiet evening, they even went to bed without any issues tonight.

All of the girls have been amazing, not just tonight, but for the last several weeks. My oldest has stepped up and helped me out with her younger siblings. She is willing to drive them around and do whatever I need her to do. The youngest two have been super patient while I spend all of my free time with Grandpa.

I do believe this is a testament to my parenting skills, my girls understand that this is important and that there are times when another person's needs come before all else. While this might seem like an easy task for most, I had to learn how to be a good parent on my own. Having my parents leave when I was at such a young age really left a hole in my life. I have struggled for nearly 40 years to fill this void.

Having these girls turn into such amazing people as a direct result of what I have shown them, fills me with pride an accomplishment. These girls love me unconditionally, and this was not something I ever had growing up. The love is returned to them just as unconditionally, and they know that.

To that end, I have really tried to make it a point to spend one night a week with them and really let them be as clingy as they need to be.

Tonight I got a call from my aunt, who was up visiting Grandpa, and she wanted to know if I was coming up. Unfortunately he did not remember that I was not. I did feel a lot of guilt with that call, but at the same time, I know what I was doing was important too.

Tomorrow will be another day and we will see how much we can get done.

Gaining Strength

Yesterday, January 24, 2010, we took the girls up to see Grandpa. He really looked better and lit up when the girls came in, it was nice to see. He teared up a little as they gave him hugs and kisses.

He was able to put his glasses on by himself and was able to eat by himself.

When I saw him happy and stronger, I was relieved. I realized that I have been holding in the emotions and when I saw that he was getting better I felt less stress.

His youngest sister was leaving as we arrived, she has been amazing in helping with his care and really watching out for him.

I do wish that there was more family to share these responsibilities, I feel overwhelmed with all that I feel like I need to do. There is no way that just one person can do it all, and it amazes me that I continually try to take on the full burden myself..

Yesterday I worked, came home and worked on homework while my husband took our youngest to dance. He then came home and we took three out of the four girls to Arby's for dinner and then to the hospital. We came home so I could finish my homework and get the little girls to bed.

It is a daunting day for any one person, and I am catching a cold on top of it all. I ponder if I should even go visit him with a cold, but at the same time, I never want him to feel like we are abandoning him.

I know what that feels like, to have everyone that you have ever known and loved leave. I strive to prevent that feeling in others, which sometimes pushing myself past the point of exhaustion.

Tonight, January 25, 2010, I went up to see Grandpa alone.

He was doing even better tonight and really looked stronger. It is nice to see him so strong. His sister was leaving again as I got there, so it was a good trade off. I ordered his dinner and visited with him.

He made a comment about the weight I have gained over the years. It reminds me of the comments that my grandmother used to make about my weight and made me feel a little uncomfortable, almost like I needed to defend my right to be overweight. I am nearly 40 years old, I do not need to answer to them.

As the evening progressed I realized I would need to stay and help him eat, and so I contacts my 14 year old to let her know that I would be a little later. I then helped Grandpa to eat his dinner. He has been having issues swallowing lately, and tonight it ended in him vomiting up the macaroni and cheese that we ordered.

I don't know why he does it, but sometimes when he is drinking the liquids will almost foam up. This makes me think that he is having more trouble with his lungs than we had suspected. It is something that we need to talk to a doctor about, but I am never there when a doctor is there, and they aren't calling me daily this time.

While talking to him tonight, I have decided that we need to sit down and really outline his health issues with him. I would like him to make an informed decision. He "jokes" about wanting to just shoot himself, but I know this isn't really a joke.

His quality of life will not be what he wants it to be, and at some point we really do need to talk about what he wants to do. Does he want us to make him comfortable and let him die with dignity, or does he want us to take him back to the hospital and let them save him again. With his failing organs, it is a valid option to just let him die peacefully. It won't be an easy thing to watch for me, but I do believe it will be much more humane.

Back to the hospital

Yesterday, January 22, 2011, I had planned a very low key day. All four of my girls were away for the weekend and my husband was working all day. Sounds like something dreams are made of.

I spent most of the day relaxing and watching TV, around 4:30 I decided I should get up and get dressed to go see grandpa. I got up there at about 5:50 and walked into a smell that just assaulted the nose. He had apparently not been able to make it to the toilet, and they had been trying to keep up with it.

After the initial shock, I noticed that he was shaking again, and looked bad. I tried to feed him some dinner but he did not want to eat. Both of these are signs that things are not going well with his body.

He said he needed to go to the bathroom so I called the intern in to help him, but he needed additional help so he grabbed a bedpan. It was too late and another cleaning was needed.

The nurse came in to assess him again and I spoke with her. He had a fever and was disoriented again, definitely looking like another trip to the ER.

She called in the orders and I got ready to meet my husband at the house so we could take one car to the hospital, we stopped to get some food and to call our 9 year old, it was her birthday as well.

We arrived at the hospital about 8:30 and went back to see him, they had him in a larger room and were working on him so we sat in the waiting room for an hour waiting to be called back. Finally we went back to check on him.

It was determined that he had a urinary tract infection, and some other infections in his legs. His temp was 103 and they were having a hard time getting it lowered. He would be admitted again. We stayed until he was comfortably in his room at midnight and then headed back home.

While speaking with the admitting doctor we learned of a few more ailments and it was suggested that we just not bring him back in at some point. Basically, it was suggested that we let him die.

While this is hard to hear for most, I am level headed, and I know that if this were a pet I would have already put him out of his misery. I do not like seeing things/people suffer, and I realize that his quality of life is nowhere near where he would want it.

That will be an interesting conversation to have at some point.

This morning, January 23, 2011, as I was getting my tea, I received a call from the nurse in charge of him. He was "pissed off" and wanted to know why he wasn't being fed. He was not sure where he was and what was going on, but he was obviously feeling better.

I called my husband, but was unable to wake him, so I quickly ran home and asked him to go to the hospital to see what was happening. It turns out grandpa needed an ultrasound and was not able to eat because of that, he was not understanding this.

My husband got him breakfast and ordered lunch and dinner for him. He left when my aunt, my grandpa's youngest sister arrived.

I arrived after I took a test for school, he was sleeping so I let him sleep and dozed in the chair by his side. When dinner arrived I fed him and helped to get him settled for the night. I spoke with the nurse and made sure to let him know that I can be called at any time.

I got home in time to get my two youngest girls from my in laws and work on a little homework before crashing for the night.

His list of chronic ailments, that I can remember, includes:
failed liver
failing kidneys
small cell lymphoma and another type of leukemia
(the cancers are located in his lymph nodes in his lungs for now)
congestive heart failure
diabetes
enlarged prostate
over active thyroid
he has had a class A stroke(not sure what that is)
diabetic neuropathy

After reading this over I realized that this was a very clinical and emotionless entry. I am having a hard time allowing myself to process all the emotions that I feel at the moment over this situation. I am trying to stay level headed so that the best decisions can be made for the man in that bed at the hospital. Emotions, at this point, won't help to make him better or make the right decisions for him.

I pulled away last night while I was listening to the doctor's assessment and I have not allowed myself to feel all the grief that is building inside. There will be a time and a place for that, right now, I need to keep my focus and make sure that he is receiving what he needs from the staff, no matter where he is.

Getting Caught Up

Like most people in this situation, I have decided to blog about my experiences. It isn't to really help anyone but myself. My one selfish act.

A very close family member is dying. While we all are dying, his end is getting closer and closer. He is a man I have called Grandpa, but he is so much more than that. My grandpa was more of a father than I could have hoped for. He took my sister and I in when he definitely did not have to. Grandpa and Grandma were on their way to a happy existence, empty nest, and peaceful days. Instead, they took in a 2 year old and an infant, to raise as their own.

This was a time when this was not so "cool" to do. My family always stuck out from the others at school, but it was always my family.

Legally he adopted me when I was 9, and in the fourth grade.

It was 1980 and we were just getting ready for our Halloween party, we still had those back then. I got a call to come to the office where my sister and my biological father and soon to be step mom were waiting for me. I was informed that we were going to go away with them to their wedding, I was scared and unsure what was happening. Though I knew my father, I hadn't spent much time with him in years, and he had certainly never gone to the school before. As it turns out the school secretary knew something was up and called my grandmother. She was already on her way with cupcakes for the class parties, so she hurried up to ensure that we were not taken that day.

The rest of the adoption process was a bit of a blur, I remember being out of school for a few days while they got the legalities settled. I also remember being afraid that some men in an unmarked van were going to pull up and take me away. I had an over active imagination back then.

Nothing really changed in my life, I lived with my grandparents just as I had since I was a toddler.

We buried my grandmother 10 years ago last August. It was a pretty tough loss on us all. She was the mother my own mother never could be, and someone I looked up to. She helped to shape me into the woman I am today.

Now my grandfather is sick, and I am struggling to give him a death with dignity. To ensure that he is well cared for as his body betrays him. His organs are slowly shutting down, and he has been in and out of the hospital since June of 2010.

It was then that we learned of the failure or his liver. Because he had not been eating or drinking enough his kidneys were trying to shut down as well. Further testing also revealed a small cell lymphoma, that is centered in the lymph nodes in his lungs. As of November 2010 this had not spread to his bone marrow.

He is also a diabetic, and with that comes diabetic neuropathy, and he is no longer able to feel pain in many of his extremities. He gets sores on his feet and legs, and is not able to tell anyone how much they hurt, or even that they are there.

This last episode began as we rang in the New Year. I was called to the house that he owns, where my sister and uncle had been caring for him, because he was a little cranky and just out of it.

He had not eaten much that day and his blood sugars had not been checked. We talked over his care with my sister and uncle and I was told that he was getting to be a bit much for them to care for. His needs were getting to be greater than they were able to give. We discussed a few options and I had decided to come back and sit and talk with him.

The next day I stopped by after work and we discussed assisted living, and he had agreed to let me look at a few places and get a feel for them. On Monday I went to tour my first assisted living home, that night I took him to the hospital.

He was in the hospital from Monday evening, 01-03-11, until that Friday, 01-07-11. From the hospital he went into a skilled nursing facility, where they began to work on making him stronger so that he could live more independently.

He was healing well and looking good, but on Saturday, 01-15-11, I noticed some shaking. This indicates that his body is having some trouble. By Sunday night he was shaking pretty hard. On Monday I got a call at work letting me know he had fallen. I went to visit him Monday evening, he had just received his first does of a powerful drug to remove the ammonia from his system. I just had this feeling that he was not doing well. He fell asleep as we were visiting, but he was disoriented and agitated. I received a call asking me to come sit with him, since he does better if we are there.

We were able to cover most of the evening, and my husband went in on Tuesday morning to check on him. He was violent and agitated, and really just not doing well. Tuesday evening he was transported back to the hospital. Over the last few days he has regained some strength and all of his ability to recognize people.

It is rough to see him in the condition he is in now. He was the man I looked up to for so many years, and now, he is the man I will ensure has a death with as much dignity as I possibly can.

Tonight, 01-21-11, he is resting comfortably in his bed in the skilled nursing facility.