Update

I have been trying to get the emotional energy to write this post today.  It is amazing how sitting around not doing much but getting someone water or helping them get up from a chair can wear you out.

Things are still declining fast with my dad.  I can’t believe the difference in just the 3 days I have been here.  I will touch on the main points.

* He can’t get up and down at all by himself anymore.  Two of us always has to be here to help move him.  He isn’t heavy anymore.  He has lost a lot of weight.  But the steroids have taken away all his muscle mass and he doesn’t have the strength to lift himself.

* He is still eating, but there has been a sharp decline in that in just the past 24 hours.  He ate a little oatmeal this morning and then had no interest in food even when my mom fed him some puree peaches at 3.  He did however come sit with us at the dinner table and eat a little.  He is having trouble swallowing and chokes a little on food and water.  His water intake is much lower today also.

* He can’t see very well.  He reaches for things and totally misses them or grabs something other than what he was aiming for.  His eyes are watery now and he stares a lot (when he is awake) through you or at the wall.  Last night he sat up in bed and looked around the room like he was seeing something/someone other than my mom and I.  My mom asked him who else was in the room with us.  It gave me the chills.  I hope someone is here with him helping his transition into the next life.

* I think he is in pain sometimes.  He moans in his sleep and touches his head.  I finally talked my mom into giving him something stronger than Tylenol.  We started giving him morphine last night.  We also have been having to give him Ativan on a more regular basis as he gets agitated easily.

* We have stopped all medications except his steroid and his anti-seizure meds, and of course the pain meds etc. that I listed above.  They even stopped his Coumadin today.

* I think he has moments of lucidness.  This morning at the breakfast table he kept telling my sister and me (in his garbled speech) that he was a disappointment.  Heartbreaking.  We both firmly told him that wasn’t true and that he has been the most amazing father.  He told my mom this morning that he thought he was worthless and he was sorry.  I think those words have been the hardest so far in all of this.  I hate thinking that he would ever have those thoughts cross his mind.

* He still has a catheter and probably will now til the end.  It is so much easier for him, and us, not having to get up every 15 minutes to go to the bathroom.  He has had prostate problems in the past and is not on his medication for it anymore.  The catheter allows his bladder to always be empty which I am sure is a relief for him.  He still is using the bathroom for bowel movements, although they have slowed down.  My sister had to help my mom with him and my dad was so upset.  He just cried.  We got him a bedside commode today and hopefully that will help.

* We got a wheelchair for him on Monday and it has been a lifesaver.  We also got a hospital bed for him today.  We were so afraid he was going to get pressure sores on his legs and bottom from sitting in his chair in the same position all day.  The bed we got has an air mattress on it that changes pressure every 5 minutes so he doesn’t have direct pressure on any one spot for very long.  He is sleeping comfortably in it right now.

* He has probably slept 23 hours in the last 24.

* We sat down and planned the funeral and I wrote the obituary.  We meet with a different funeral home tomorrow to see if they are a little less expensive. I finished the video we are going to show at the funeral.  I want to get this all done with now because I know that week is going to be a crazy mad house trying to get everything taken care of.

* His vitals are still pretty good.  His oxygen is at 91 and his blood pressure was 108/67 today.  No fever, but seems cold to my touch most of the time.

Yesterday I was having a “conversation” with him about ice fishing.  I asked him if he thought fish sleep.  He just looked at me for a minute and shook his head and laughed and told me I was weird.  Funny.  My sister reads to him sometimes. Most of the time he just wants quiet.  I haven’t been in this much quiet in years.  No TV, no radio.  Lots of time to think.

My mom is a rock.  Always positive.  Working like a trooper.  My sister should be a nurse.  She is up and down with him doing anything that needs to be done.  She will stay here to the end.  I have to go home on Friday.  I have a sick 14-year-old.  I will probably come back down on Monday or Tuesday.  Sooner if need be.

It’s hard to believe that the end is almost here.  My husband I were talking on the drive down here how emotional this year has been.  A year ago I was freaking out that my oldest was leaving for the Army in February.  He left, my dad was diagnosed a month later.  My son came home from the Army because HE was sick and needed surgery 2 days after my dad had his first surgery. He had surgery in April.  We got married in October and my dad’s tumors came back with a vengeance in November.  If we took one of those “how much stress do you have in your life” tests we would check the top 5 boxes.  Thank heavens for Xanax, anti-depressants, and sleeping pills.  They are my best friends right now.

I have to say though my parents friends, neighbors and church members have gone above and beyond for them.  We have had so much food brought in and so many visitors and phone calls.  We feel very loved.  Thank you.

45 Week Update

I am back down at my parents and thought I should do an update.

My dad has taken a sharp decline the past few days.  He fell twice on Saturday.  Luckily he wasn’t hurt.  He did break a chair in the process and scared the crap out of my mom.  I wasn’t planning on coming down again until the 4th of February, but just felt that my mom needed help and support.  It is just too much for her to do alone.  My sister is here also.

Main things happening:

* He is sleeping most of the day.  He will get up and come sit on the couch, but I would say he is sleeping probably 21 hours total a day if not more.  He isn’t getting dressed anymore and sometimes asks to get back in bed.

* He has a catheter now.  He was just having such a hard time getting in the bathroom and that is one of the times he fell.  He has slept better since he got it and seems to be more comfortable .

* The Hospice nurse will be coming everyday now.  Whether it be to bathe him or to take his vitals.  They are so kind.  I am so pleased with their work.

* His blood pressure is getting low.  It was 102/60 today.  Which is ironic because he has had high blood pressure for so many years.  His kidney’s are starting to slow down/shut down as his urine is now very dark.

* He is cold to the touch most of the time but doesn’t seem to feel cold.  His face is flushed a lot of the time too and swollen from the steroids.

* My mom upped his steroids last night in hopes that we might get a few hours of awareness with him.  All it did was make cry this morning.  He was so sad.  He kept shaking his head and babbling.  I think maybe it gave him some clarity on what is happening and either scared him or frustrated him or both.  We had to give him an Ativan.  So we won’t be doing that again.  My mom will keep his steroids at the level they were.

* He is still eating and drinking well.  He is having trouble swallowing and coughs a lot.

* I think he may be having some headaches but can’t really tell because he can’t verbalize how is he feeling.  We gave him some Tylenol today.  The Hospice nurse said to watch him and if he seems to be grimacing that maybe we should start giving him morphine.

* I asked the nurse if she could give me a time frame since she has worked with many patients that have had brain tumors.  She said it could be weeks or even months there is no way to tell.  But since he has declined so sharply over the past few days that it could be soon.

My husband is home with the kids.  He braved a huge blizzard yesterday to bring me down.  I am torn between wanting to be home and being here.  Honestly this all just really sucks.

Please keep my friend R.A. and her family in your thoughts and prayers.  She lost her husband last week to GBM.  He was an amazing man.  She has been a great help to me over the past year. She has had such a positive attitude and always reminded me to keep my chin up.

Again, thank you to all of you for your emails and kinds words.  They mean so much.

44 Week Update

I am going to try and post this from my phone since we don’t have internet right now. If it is a total mess I apologize.

I wanted to update because things seem to be happening a little faster now. I talked to my mom tonight and she said that my dad fell again in the early hours this morning when he got up to go to the bathroom. She said he was really dizzy. He didn’t hurt himself thank goodness. He got up this morning and ate breakfast but then went and got back in bed, which is something he never has done.  She said he didn’t get dressed until after 3 this afternoon.  Another not normal thing for him.  He also knocked over their TV in their room because he was so unsteady on his feet.

She called Hospice today and they are bringing over a walker for him. She had to give him some Ativan last night because he seemed agitated, upset and sad. It is the first time she has given it to him. She didn’t know if he was realizing what was going on and was upset at his inability to express himself or if it is a side effect of the steroids. They did say that the Ativan didn’t have anything to do high his dizziness since there were 8 hours between when he took it and when he fell.

I did talk to him last night and he got frustrated that he couldn’t say what he wanted to me.  He was able to say “I can’t even talk anymore.” I told him it was ok and that I knew what he was trying to say. I told him that I loved him and missed him. I made him cry.

I wish I could know what he was thinking and how much he is really aware of.  I so hope not very much. It makes my heart ache to think he might know everything and just be a prisoner in his own mind.

My cry scale is about a 8. I spent most of Saturday crying on my bed.  I think it was a melt down from just being at my parents. I am trying to hold it together but little things set me off.  It is amazing how all consuming this is.  It is also amazing how the rest of the world just keeps going on. I get frustrated with stupid things like how the news keeps going on about did Beyonce lip sync the national anthem at the inauguration or the stupid Super Bowl.  I want to scream “My dad is dying people, can’t you feel the same pain I am?”

43 Week Update

Originally written 1/18/2013  (We don’t have internet at home right now so I had to wait to upload this at work today.)

I’m on the train heading home after a stay with my parents. I feel I am heading in the wrong direction.  AWAY from my dad. I feel like I should stay with him until the end. That is what he would do for me. But I have responsibilities to work and my kids. But I makes my heart hurt to leave. There were lots of tears and hugs. I told him we would see him soon. I don’t know how much he really understood except that we were leaving.

It was an emotionally rough visit. I was on the verge of tears the whole time.  Hell I’m trying not to cry on the train.

I’m just going to hit on the main points of the visit and try not to have a pity party.

*Dad can’t make a complete logical sentence. He substitutes words and makes up his own. You just have guess what he is trying to say and answer him.

*He has a good appetite still and doesn’t sleep as much as he was even doing at Christmas. He does have edema in his legs that make them tender.

* His Hospice nurse comes twice a week right now. They check the basics and his Coumadin levels. Mom has been very happy with them. They told her she can call them anytime she needs them and they will come as often as she wants them to. In the end they can come twice day if need be.

* He gets restless. He will try to do the dishes or checks to see if there is any laundry to do. He wants to go outside but right now it is too cold and icy to do anything out in the yard. I think he is bored and wonder how much he is aware of during the day. I wonder if he is lucid at all and just can’t find the words to express himself. Sometimes he just wants to sit in the quiet. He doesn’t sleep, he just sits there. It is so sad. I keep saying that, but I can’t think of another way to express how it feels to watch this beside frustrating, heartbreaking, and sad.

* My mom can’t leave him alone anymore. If she needs to go out she either takes him with her or has someone come over and sit with him. It hasn’t been a problem so far to take him along, but she said she won’t be able to do it much longer. It just makes him too tired.

* He fell last night. It was scary as no other and happened very quickly. He tripped over some shoes and tried to catch himself on the window sill and since he has no muscle strength he ended up hitting his face on it and falling to the floor. He is on Coumadin (a blood thinner) so we immediately called Hospice. (Once you are on Hospice care you don’t call 911 anymore.) They sent out a nurse and got him taken care of.  He ended up getting stitches.

*The doctor that stitched my dads head up (we had to go to  dermatologist to do it the nurses couldn’t) wanted dad to get tetanus shot. Really….shesh.

*He apologizes a lot. Like he is sorry he is like this and that we have to take care of him. It’s heartbreaking. Especially after he fell. He just cried with his head in his hands saying he was sorry over and over again.

*I went  with my mom and picked out a casket for him today. Realized that I don’t have enough life insurance and that I really never want to do that again. Oh wow…

*Sometimes even Bon Jovi can’t/doesn’t make you feel better.

I will be going down again in the next week or so. Honestly I really don’t want to. It is so hard to watch this. But I don’t want my mom to do this all alone and I do want to be with my dad. I keep praying that this will go fast. Selfishly I don’t know how much longer I can do this and keep it together and function as a mom and at work. I just want it to be over and know my dad is in a better place with family that loves him and he isn’t sick anymore.

Thank you again to all of you that have emailed me and commented here on my blog. I am sorry I haven’t personally responded to each of you. You are all in my thoughts and prayers though. I wish you all comfort and peace.

 

41 Week Update

I apologize for the horrible way this post is posting in wordpress right now.  It is one jumbled mess.  I can’t figure out why.
Facebook Post 1/9/2013
I’ve had many inquiries about how my father is doing and I have been waiting for the ok from my mom to post an update. As you know he had surgery at the end of November to remove a new brain tumor. Within the 19 days from surgery to his post op MRI he has had 3 new tumors grow. Due to how quick the progression was he isn’t a candidate for most Glioblastoma treatments. As a family we have thought and prayed about where we should go from here and all agree that my father would want to stop all treatment and live the rest of his time happy and peaceful. He is in no pain and shouldn’t be. That is one blessing with this type of cancer. We aren’t getting the length of time with him that we all hoped for but are so grateful for the time we have had this past year making wonderful memories and strengthening our bond as a family. My mom has been amazing through all of this with her positive attitude and never ending love for my dad. (There truly are “happily ever afters” in this world. My parents have had one for 45 years.) Please keep my parents in your prayers. We are so thankful for the love and support we have received over the past year. Thank you.
The outpouring of love from our family and friends has been overwhelming.  This is one thing about facebook I do like.  My mom is glad she doesn’t have to keep telling this information over and over again to everyone.  She met with Hospice yesterday and they will start their visits tomorrow.  She felt really good about their meeting and got lots of information and questions answered.  I will be heading down next week to spend some time with my dad before he gets worse.  He is still up and walking around.  He still has an appetite and is eating, not a lot though.  He doesn’t talk much, but does answer my mom’s questions and will say a few short sentences here and there.  Sometimes it is like he is speaking his own language of made up words though I am told.  I haven’t talked to him for a few days since it is hard for him to remember who he is talking to on the phone and gets distracted easily.  It makes me sad.  I have really grown to enjoy our daily calls over the past 10 months.
Today I am home with my sick 5 year old.  I took some time and explained death to her and how grandpa was sick and was going to die soon.  At first she couldn’t grasp why the doctors couldn’t just go in and fix it.  That is what they do when she gets sick.  I told her that sometimes things just can’t be fixed.  Then I told her about heaven and that so many people were waiting for grandpa and they will be so happy to see him.  I reassured her that he wouldn’t be alone or scared and he would be happy to see them too.  I have been struggling with this for a few months.  How and when to tell her.  She understood it better than I thought.
If any of you out there reading this have already gone through this I would love some idea on how the next few weeks/months are going to be.  I know every situation is different.  I would just like to be aware of the all the possibilities.  I have read the web site brainhospice.com and thought it was very informative.  Very worth the time to read it. I would be very interested in your experiences too.

Just a Note

I just wanted to take a minute and thank all of you that have commented here on the blog or emailed me personally these past few weeks.  It is so nice to know that someone else knows and understands what I am going through.  I have never met and probably will never meet any of you in person, but I consider you my new  friends.  It is unfortunate that we have to meet under these circumstances.  Please know you are in my thoughts and prayers.

If I don’t respond to your emails or comments in a quick fashion please know that they are very appreciated.  I am trying to function with daily life of family, work etc. without going into autopilot mode.  I read everything and it gives me comfort.

Thank you!!
Heather

Decision

My mom has made the decision to stop all treatment with my dad.  He will stay on his steroids, anti seizure medication and all other meds that help him stay comfortable.  But she has decided to do no more Temodar, Avastin, radiation or anything along those lines.  She feels that this is what my dad would have wanted. To die in peace.  He has fought hard and been such a strong person.  Never complaining, never feeling sorry for himself.  Just saying “It is what it is.”  and going on with his life.

I am so grateful for the 4 really good months we got after his first surgery.  We all got to spend time with him and make memories with him.  I am glad I had this conversation with him.  It gives me peace to know that he knows how much I love him.

My mom will call Hospice this next week and go from there.  I am planning on taking as much time off work as I need to to be down there with her and my dad.  I am lucky that my job/boss is so supportive and letting me do what I need to do in this situation. I am feeling sad for my brother who leaves tomorrow to go back to grad school in Colorado.  It will probably be the last time he will see my dad before he dies.  I am glad he has gotten to spend the past week with him.

I am very sad, but also filled with peace still as I said before.  I know he has lived a good life.  I know he will be welcomed with open arms by my grandmother, uncle and great grandparents.  I know he won’t be sad or alone, nor will he be feeling any pain or complications from this horrible disease anymore.  Knowing that gives me even more peace.

The Good, The Bad, The Ugly

The Good:  My dad is happy.  Can still move around fine.  Hasn’t had any serious falls.  Can feed himself.  Isn’t sleeping all the time and has a good appetite (due to the increase in his steroids currently.)

The Bad:  He can’t form coherent sentences now.  He is substituting words right and left.  (Last night he asked my brother that is visiting him if he would like to come in the other room and cut off some ears or two or maybe cut ’em off and see what cut ’em.  My brother assumed he wanted to know if he wanted some dessert.)    He is forgetting people’s names, and he is having problem with incontinence. He also has no common sense.

The Ugly:  The post op MRI  showed that the tumor had “exploded” (doctor’s word). He has 3 new tumors that have just happened since his surgery November 30th. They have also crossed over to the other side of his brain.  He has a right and left frontal tumor, a left temporal tumor and the satellite tumor he has had since the beginning is still there.  He isn’t a candidate for Gamma Knife surgery.  He could still try the Avastin but it would only give him a 30% chance of another 4-6 months. The doctor said if it was his loved one he would discontinue treatment and call hospice.

With how fast these 3 new tumors have grown (19 days!), and he had the chemo wafers implanted at the sight where they removed the last tumor on November 30th (It is one of the places a new tumor has grown) my mom is having a hard time deciding what to do.  People keep telling me be optimistic, be positive,  keep fighting, don’t quit,  something may come down the road and save him.  But how long do you put your loved one through all of these treatments and medications before you become realistic? Being hopeful and optimistic is good. We have done that for the past 10 months. But now we are to the realistic point. My mom doesn’t want to see him struggle anymore or put him through more surgeries or drugs that will make him feel worse rather than better. With the doctors only giving her a 30% chance of the Avastin working (not to mention the cost, $1000 a round just for the medication) she is thinking maybe it is time to let him go peacefully and happy like he is now. It is such a tough decision.

First and foremost we want him to be happy and comfortable. Not sick and miserable. Sometimes I feel when my mom and I are talking like we are talking about the family pet. Which is a horrible feeling. You don’t ever want to give up on someone you love but you also want what is best for them and what will make them the happiest. Gah…I hate this. I wish we had a crystal ball that would tell us if the Avastin would do any good or not.

I suggested to my mom that maybe she should try just one round of the Avastin and see how he handles it, if it makes any difference and go from there. She met with 2 other of his doctors this week and neither of them have given her any information that is helping with her decision.  So thoughts and prayers for my mom would be much appreciated.