Good neighbors

One neighbor came over today to look at Marshall's guns and fill me in on what they were.  Marshall wanted his guns to go to (1) my brother Bob; and (2) his nephew Hank.  Now I have at least an idea of what they are.

Another neighbor is coming over tomorrow morning with his tractor to see if he can help fix up my road (here's a photo so you can see what it looks like) -- I really like living way out in the mountains but when things like this happen I question my sanity.  This road is the only way to and from my house.

Social Security

I went to the Social Security office today and learned that since my Social Security check is more than Marshall's, I do not get any survivor benefits.  His check is now discontinued and I will continue to get mine.  And that's that.

However, I do get a one-time payment of $255 and I will fill out the application for that payment as soon as I get the death certificate.

So I am making progress ...

Last night we had one heck of a storm and our road almost washed out in one spot.  It is very close to being impassable, very scary.  Marshall always knew what to do in these situations and who to call so I am kind of floundering.  I miss him in so many ways.

Marshall and Me

This kind of says it all.  I miss him so much.

Another day of phone calls

First, I was on the phone with AT&T for hours trying to solve cell phone problems and AT&T said the fault was with CenturyLink (our internet provider) so I was then on the phone with CenturyLink and -- you guessed it -- they said the fault was with AT&T.  So I got nowhere and still have cell phone problems.

Then I called Social Security and was on hold for a very long time and finally decided to take the recorded message's suggestion and go to the Social Security web page.  And then the web page's suggestion was that I should probably go to the Social Security office in person, so I will do that on Thursday.  I will need Marshall's death certificate which I'm not sure is ready yet.

But anyway, I read the web page and tried to interpret it and if I am understanding it, I am actually entitled to part of Marshall's Social Security in addition to mine.  There are a series of criteria that have to be met and that has to be done in person.  When I go to the Social Security office on Thursday I should get the definitive answer and I will report back.

A little bit of good news today

Today I started making phone calls to stop Marshall's various monthly retirement-type checks.

The first call was to the Office of Personnel Management for the post office.  Marshall and I both had determined that when he died, I would lose his health insurance as well as his pension check.  I was pleasantly surprised to learn that I could keep the insurance at a discounted monthly premium.  This is really good news because between Medicare and his Government Employee Health insurance, we did not have to pay a cent for any of his cancer care, so it is very good coverage.

His pension check is going to be discontinued but I will get some sort of prorated "settlement" amount.  It won't be much, but every little bit helps.

I also called the Veterans Service Officer to find out about Marshall's disability check.  According to the VSO I will probably be entitled to continue to receive half of what the monthly amount was.  Of course, it's the VA so I'll believe it when it happens, but that's tentative good news.  He also said that since Marshall was a 100% totally disabled veteran, I am entitled to $2,000 for end-of-life expenses.  And evidently they will also provide a headstone.  Not sure how that will play out with him getting cremated, but we will see.

Tomorrow I have to call Social Security.  I don't expect any surprising news in that department.

Memorial Service

Okay, it is all set -- the Memorial Service info is:

Saturday, August 8, 2015 at 1:00PM
American Legion
539 East South Street
North Baltimore, OH  45872
(419) 257-2158

Regrets

For all of the caregivers out there who are struggling to make sure their loved one is well taken care of during the treatment for prostate cancer, I wanted to share with you the fact that I am having some deep regrets over missed opportunities to hug, and to talk about what's going on.  I am realizing hat I spent a lot of time doing things that I thought took precedence over everything else, like making sure prescriptions were renewed, making sure medication schedules were kept, grocery shopping, preparing meals, etc., while Marshall was sitting by himself watching TV or napping, when I should have been hugging him more.  And I missed a lot of opportunities to simply talk about the disease and what his hopes were and his fears and even how he would like me to handle things after his death.

I went on his Facebook page a few days ago and I was absolutely blind-sided by some of the things he put on Facebook that he never discussed with me.  I know we can't start second-guessing everything, but I sure wish I had paid more attention to him and what he was feeling and going through rather than what to fix for dinner or whether the pills were organized for the week.  It is sad to know that he was sharing his feelings on social media instead of with me.  I think I was caught up in the enormity of what was happening to us and the best way I could handle my own feelings was to go into action rather than slow down and be "in the moment" a little more.

Just wanted to pass that on, for what it's worth to other caregivers.

It looks like the memorial service in Ohio is going to be on August 8 at the American Legion in North Baltimore, Ohio.  We haven't received confirmation from the Legion yet but hopefully we will finalize it tomorrow.  So stay tuned.

Moving on

First of all, I noticed that my post about Marshall's death was dated July 23.  I wrote that he died "today" on July 23 but I wrote that in the wee hours of the morning on July 23.  Marshall's actual date of death is July 22 at 6:30PM.  Just wanted to clarify that.

I spent Thursday making phone calls (heart wrenching) and then finding phone numbers for the
VA and Medicare and other places I needed to notify.  Tricia prepared a lovely obituary and I submitted it to the local newspaper.

I walked around the house missing Marshall terribly and realizing that I may need grief counseling.

Today I went to the VA in Pueblo with some paperwork and I took Marshall's wedding ring to a jeweler to have it sized for me so I can wear it as a memory.  I started to feel a little better today.

R.I.P.

Sad news -- Marshall died at 6:30PM this evening.

The day was a lot like yesterday and Marshall was still doing the Cheyne Stokes breathing.  I called the hospice people and asked if they could send over a chaplain to pray with us and they sent Thomas.  He was here for hours chatting with me and holding Marshall's hand.  Then around 6:00 the chaplain prayed a beautiful prayer inviting Marshall to let go and join Jesus and then the chaplain left.  He was no sooner out the door when Marshall breathed his last breath with me holding his hand.  I guess you couldn't ask for it to be more peaceful than that, right?

I called one of my neighbors to come over and be with me for a while, then I called hospice and the nurse and the chaplain were here by 7:30.  They made the arrangements for Marshall to be picked up and transported to the research facility and while we waited for the transport vehicle to come, we sat around and told stories and cried a little and laughed a lot.

Coco and I had a moment to say goodbye to Marshall when he left and now I am trying to process it all.

This blog is almost done.  I will keep it going until a memorial service is set.  My thanks to you all for giving me this wonderful outlet over the past three and a half years.

Another fairly quiet day

Today was kind of a repeat of yesterday.  But Gina was here and I was able to go to town to get the mail.

My friend Janel told me about Cheyne Stokes breathing and I swear that is what he's doing.  He's been doing it for over two days now.  Today he refused water and was very unresponsive.  At one point our cat jumped up on Marshall's stomach, which in the past would have caused Marshall to jump or even yell, but today he barely moved even though the cat not only jumped on his stomach but scratched him.

And this was strange behavior for this cat (Okie).  He is a very careful, very loving cat and doesn't jump on us like the other cat.  But he jumped on Marshall today and when we tried to pick him up and get him off the bed he refused to leave, he kind of glued himself to Marshall's side.  If I was superstitious, I would see that as some kind of omen (smile).

And outside of lifting his arms constantly, and the Cheyne Stokes breathing, Marshall has not moved an inch in several days.

Pretty quiet day

First of all, Gina and I have made up.  We are pretending like Saturday never happened.  Gina will be back tomorrow, but not 24/7.  She will just come in from 9:00 to 5:00 every day and then she'll go home and come back the next day.  That should give us each breathing room.

Today it was just Marshall and me.  Marshall is extremely agitated -- I've been told that is called terminal agitation -- and he can't stop moving.  The hospice nurse said to give him morphine for that so that's what I've been doing.  It doesn't seem to help much.

He spends hours lifting his arms up towards the ceiling and he stares at the ceiling as though someone is there.  It is very tempting to imagine that he is seeing angels, or even his mom and dad.  I get tired just watching him, I don't know how he has the strength to hold his arms up as long as he does.

He is still not talking.  This morning he tried to say something but it was unintelligible.  Darn it.  And today I couldn't get him to drink much water at all.

I hope he has a quieter night tonight.

No change

Tanya and I had an okay day without Gina.  Marshall is very very fidgety and had his eyes open a lot today but didn't say anything.  He drank some water.  We gave him the liquid morphine and liquid Ativan three or four times but it didn't really calm him down much.

Tanya leaves tomorrow morning and it will be just me and Marshall and an occasional hospice CNA. I guess it's a good time for me to clean the bedroom (I can't stand sitting still!).  Marshall will be sad to see Tanya go so I hope tomorrow doesn't bring more agitation.

Caregiver Meltdown

Well, today was interesting.  There was a huge disagreement over who does what and the paid caregiver/CNA -- Gina -- stormed out and went home.  Very very unprofessional.  She could have easily calmed everything down but instead she chose to instigate a yelling match over whether or not to offer Marshall some water, and a yelling match was a huge no-no to do in front of Marshall.  He does NOT need to hear dissension among the ranks of people taking care of him -- and we are told that he hears everything even if asleep.  In these final days he needs to hear nothing but love and soft voices and maybe a little soft music.  So we move on without Gina.  I am so disappointed in her.

Tanya leaves Monday morning and I will be calling upon the hospice people to provide a CNA, but it won't be 24/7.  That's okay, I've gotten a good idea of what he needs and now that he has the catheter things are a bit easier.  So I should be okay going forward by myself.

I don't know if I've mentioned this or not, but Marshall is donating his body to research, so I spent some time today getting all that paperwork done.

Marshall was mildly lucid today, too.  He replied to questions and had his eyes open several times.  He had some pain which we medicated and he slept a lot.

Pretty much the same as yesterday

Marshall is basically unresponsive, although he does occasionally open his eyes and look around.  But he doesn't communicate at all.  He didn't eat today and he only had a few sips of water.  He hasn't really moved on the bed.  He will sometimes nod his head to answer a question, but not often.

Today we decided to play bluegrass all day long.  It's his very favorite music choice.  He seemed to enjoy it and he seemed to really be listening because the satellite went off two or three times briefly and when the music stopped he looked at the TV with a questioning look like he was asking what happened.

Back in the old normal days (boy, do I miss those normal days), our evening routine was always to watch the news from 5:00 to 6:00 and then watch Wheel of Fortune.  So that's what we did tonight.  Hopefully he was able to realize our old routine and be relaxed by it, but we couldn't tell.

He keeps his fists clenched most of the time.  The hospice nurse says that probably indicates pain and he probably isn't telling us about the pain because he doesn't want us getting upset.  So we try to watch that and give morphine accordingly.

Gina and Tanya stayed in the room with him pretty much all day today and I was in and out.  I had a few things to do in my office.  But now we are going to gather in his room to watch some TV (probably a Law & Order marathon, one of his favorite programs), and then off to bed.

A day without Gina

Gina had to take her dad to the doctor in Denver today so she was gone all day.

We had decided to play soft music in Marshall's room and that sounded nice.  I think it relaxed Marshall.  He slept most of the day.  When he woke up mid-afternoon Tanya and I sat with him and let him listen to us chatter.  We got the camera out and started taking pictures.  Here's Tanya and Marshall:

Then we watched some TV and he even had some ice cream (about 2 teaspoons). He doesn't use utensils so good any more so he let us feed him.  He's been very agitated and was picking at his clothes.  Then he indicated he was in pain so we got the medications out.

He asked for Gina a lot so it's nice to know he does so well with her.  She got home around 10:00.  And it's bedtime!

No change

The hospice nurse was here today to take care of the bodily functions.  He now has a catheter.  She gave him an enema which did nothing.

Marshall was not at all happy with the whole catheter thing and kept wanting to get up.  But he finally went to sleep. He is still very very deep in sleep and not responding to touch.

And I learned something very important tonight: do not kiss your loved one right after you give him liquid morphine or liquid Ativan because you will be sharing it with him!  I should sleep good tonight, that's for sure.

It is almost bedtime for all of us.

Keeping vigil...

Gina, Tanya and I spent much of today standing at Marshall's bedside, holding his hands and watching him breathe.  He was pretty much nonresponsive but if one of us said "I love you," he said it back.  He wouldn't eat anything today and drank very little.  Still constipated.  Tomorrow morning I think an enema is on the agenda just to keep him from being miserable.

If we ask him if he is in pain, he just stares, so it is hard to tell if he has pain, but one would think he must be in pain when you consider that the cancer is everywhere.  So we make educated guesses on giving him pain medication.

One thing is very clear, though -- he is so happy to have Tanya here.

He's having trouble now swallowing his pills, so we switched to the liquid morphine and Lorazepam today.

Tanya arrived this evening

Marshall was very restless today but he also napped a lot.  The morphine has caused severe constipation so we are trying to work on that.

I left around 4PM to go to the airport in Colorado Springs to pick Tanya up.  Her plane was late (but what else is new?) and we didn't get back to the house until around 10:30.  Gina met us at the door to let us know that Marshall had a very bad evening.  Lots of nausea and lots of pain.  Gina said she couldn't even take his vitals because he was so agitated.

But when Tanya walked in his room, his eyes lit up and he said, "Tinkerbell!" (his pet name for her).  He was able to talk to her for a few minutes.  He was absolutely delighted to see her.  She is sleeping in a bed next to his so they can have quality time together.

I hope tomorrow he feels better and can enjoy being with his daughter.

Quiet day

Marshall napped a lot today.  He also got a massage and a sponge bath from Gina.

This evening he ate a little dinner and had some ice cream.  Then we watched more Celebrity Family Feud and had more laughs.

Tomorrow night his daughter arrives.  I'm not sure he remembers that right now but he will probably perk up when she gets here.

A good day

Marshall napped a lot today but when he was awake he was in a good mood and we had some nice conversation.  And after not eating anything all day, this evening he had a small bowl of ice cream.  Gina and I cheered him on.

This evening Gina and I came in the bedroom with Marshall and we turned on TV and watched a bunch of episodes of Celebrity Family Feud with Steve Harvey.  It was hilarious and we had a lot of belly laughs.  Laughing is always good for the soul.  He was pretty tired, though, so we turned TV off at 10:00P and went to bed.

His daughter will be here Monday for a week.  He should really enjoy that.

Busy busy day

Last night was a peaceful night.

But today was a nonstop day.  First thing this morning we had to get Marshall out of his bed and into my bed in order to get ready for his hospital bed to come.  He was very cooperative.

Then a guy from hospice showed up to dismantle Marshall's present bed and put it in the garage.  He also brought a bedside commode.

Then our neighbor came over and spent hours in our garage organizing Marshall's HUGE stockpile of  tools and electrical equipment so that I would know what we've got.  That was interesting.  There are things out there I've never even heard of, much less would ever use.

Then a hospice representative came with paperwork for me to sign.

Then the AeroCare guy came and brought a hospital bed (and set it up), as well as a bed table, a CPAP machine and bed linens.

Then we had to get Marshall from my bed over into his new hospital bed.  That turned out to be way easier than we thought it would be.  His first impression of his new bed was not good.  He hates the bed rails and got upset because we wouldn't leave them down.  But when we showed him how he could adjust the head of the bed as well as the legs, he was smiling.

He talked to his daughter and granddaughter today and he appeared to be having a nice conversation, but all of a sudden he yelled for me and he said, "Why aren't you helping me unpack Tanya's luggage?"

He actually ate a small piece of lasagna at dinnertime with a small glass of milk.  Then he was really tired and dozed off.

And, by the way, my atrial fibrillation is back with a vengeance -- not that there's any stress in our house or anything.....

Hospice

Marshall is now officially in hospice here at home.  He is having lots of trouble with conversation and he gets periods of agitation.  Gina has agreed to stay with us 24/7 for this next week and boy, am I glad she did.  Tonight he decided to try to get up and ended up perched on the very very end of the bed, just a hair from slipping off and falling.

It took Gina and me 30 minutes (and I'm not exaggerating) to convince him to cooperate with us to get him back in bed.  We tried lifting him but he was a dead weight.  We finally got him settled but we are both exhausted.  I hope the 4 morphine pills and an Ativan kick in and give him a comfortable, pain free night, and I fervently hope he does not try to get up again.

His daughter wanted to talk to him so I handed him the phone and he was unable to hold the phone to his ear, so I held it while she talked, he didn't say much.  And I did FaceTime with his granddaughter and I think he enjoyed that but again, he didn't say much.  His grandson called this evening but by then Marshall was too tired to even listen.

Here's to a quiet night....  Keep us in your prayers.

Still has back pain

Last night I checked Marshall's sugar at around midnight and it was 375.  So I called the nurse and she said to give him a little insulin and wait an hour and test his sugar again.  So I did and the sugar had only gone down to 335.  I called the nurse back and she said it was coming down so I shouldn't give him any more insulin but should wait till morning and check it again.

In the morning I looked at Marshall and he was standing up at the side of the bed.  And he didn't look all that steady.  I asked him what he was doing and he said, "Would you help me get these clothes off?"  I couldn't do that because the only thing he was really wearing was that big brace.  So he laid back down.  I went to get the diabetes tester and when I got back to the bedroom he was standing on the other side of the bed.  I have no idea how he got there without rolling across the bed.  Again he wanted me to help him get out of his clothes.  So I got him to lay back down again.

I checked his sugar and it was 74 so that was good.

When Gina got here I left to go to Walgreens to pick up some prescriptions.  When I got home, he was begging us to take that brace off.  He said it was suffocating him and he was in pain.  He said he couldn't breathe with that brace on.  So Gina and I discussed it and we decided to go ahead and take the brace off.  When Gina is here she will stay close to him to be sure he doesn't twist around and when Gina isn't here, I will be there watching him most of the time.

We couldn't get him to eat much today.  But when I took his sugar just now (8:45P), it was 562!!  He asked me when he was going home.  So I called the nurse again and she told me to give him some insulin.  She said a high sugar level can cause confusion.

So that's it for today.

What a difference a day makes...

Last night around 11:00, Marshall got very very agitated and was thrashing around and couldn't talk and wanted to get up and he was very difficult to control.  I didn't want him to hurt his back but boy, it was difficult.  I was able to get hold of the telephone and dial the on-duty palliative care nurse and the first thing she said was, "Sounds like his sugar -- do a sugar reading right now."  So I had to put the phone down and immobilize him to the best of my ability and I took the sugar. reading (that was NOT easy).  It was 35, very low.  She told me to get him some orange juice and then some protein, which I did. After about 15 or 20 minutes. he quieted down and was able to talk and act normal again.  (By the way, several days ago he insisted on removing the brace so he did not have the brace on last night when he was thrashing around.)

The palliative care nurse (Kathy) came by today and stayed for hours.  She sat with Marshall and me and we talked about everything.  She brought up the subject of hospice versus continuing with treatments and we had a lot of very honest conversation.

She said that she now is sure that the past couple of days when Marshall was unresponsive and loopy are totally related to his very low sugar levels.  (I must say that I never ever realized what could happen with low sugar.)  Kathy said that Marshall should start thinking of making a decision of how he should proceed because if he wants to go ahead with radiation we will need to get the appointment in place.  Kathy said she now feels like he could certainly be strong enough for the radiation -- and have a good outcome -- IF he works at building up his strength enough to be able to walk with his walker, especially since the radiation will definitely zap his energylevel.  She said he should take a few days to think it over but he shouldn't wait too long or the radiation will not be effective.

He also needs to eat meals regularly in order to keep the sugar levels (and energy level) where they need to be.

After Kathy left, he ate an early dinner and stood up and took a few steps and then laid down and went to sleep.  He called me in there a few minutes ago saying he was in a lot of pain -- lower back pain -- and he said it was "big time" pain.  I sure hope last night's activity (without the brace on) didn't hurt anything.

Hospice??

Well, Marshall talked to his sister Friday night and told her he was going into hospice.  So maybe it's time to talk to the hospice people.  Marshall has been pretty unresponsive since Saturday morning.  He has also been mildly hallucinating.  And his upper body is warm and his lower body is absolutely freezing.

This morning his right eye was closed and his left eye was open and he was making guttural sounds.  Gina and I were wondering if he could have had a mini-stroke because an hour or so later he looked fine again.

And I have to confess something -- I've been giving him his medications just like always and didn't give any thought to his diabetes insulin.  I gave him an insulin shot last night (and the night before) without thinking that since he hasn't been eating, his sugar wouldn't be high.  So what I was doing, in effect, was lowering his blood sugar to comatose level.  Good grief, it is a wonder he has lived through having me as a caregiver.

So we talked to the palliative nurse and she said I should test his sugar.  We did that and his sugar was at 27, which is dangerously low.  So Nurse Kathy said to immediately give him some orange juice and then after that a glass of milk.  That brought his sugar up to an acceptable level.  And she told me how to handle it from here on out.

Today he has been quite agitated -- wanting to get up and then immediately wanting to lay back down.  This morning he managed to get to the living room and sit down, but immediately wanted to come back to bed.  He even had a few short conversations.  But as the day progressed, he was not able to talk to us at all.  If I said "I love you," he mouthed it back to me but he didn't speak the words.  Could all this be related to diabetes and sugar levels?

Tanya called and I handed him the phone and told him Tanya was on the line and he took the phone and then just let it drop.  I handed it to him again and he did the same thing.  I put Tanya on speakerphone and he was very intrigued by it but did not respond.  Now he is sleeping but he is breathingVERY fast.  I'll be sleeping in the bed next to him tonight and Gina will be here early tomorrow.

When people call, I take their number and put it on a list.  If he improves to the point where he wants to talk to people, we will start calling everyone back.

That's it for today.

Resting

Marshall has been pretty much sleeping all weekend.  He looks so peaceful.  I woke him up and tried to get him to eat but he wasn't hungry.  So I'm letting him rest.

Cancer Center

We headed up to Denver on Wednesday and got a hotel.  Thursday morning, we met with the radiation oncologist at 9AM to talk to him about radiating the lumbar spine area where Marshall just had his most recent surgery.  He said doing radiation in this area presents more risks than other areas and some of the risks are bowel and bladder incontinence, nerve damage and paralysis.  He said he thought the risks were still low but since they were higher than they were in the last surgery he wanted to be sure he made them very clear to us.  He wanted Marshall to think about it for a bit before making a decision.

He also pointed out that there was now cancer in Marshall's right shoulder (where he's been having all that pain) and he could radiate that area, too.  He said radiation to the shoulder was pretty much risk-free.  So Marshall went ahead and got mapped for the radiation.  They will call us in 7 to 10 days to schedule the radiation.

Then we saw Dr. Flaig.  Marshall's PSA is now up to 262.  We talked to Dr. Flaig about the radiation and he said he thought Marshall should go ahead with it because after going through that grueling surgery it would be counterproductive to not get the radiation to try to clear out all the little bits and pieces that couldn't be removed with the surgery.  He said the cancer is very aggressive.

We also talked to Dr. Flaig about the Zytiga that Marshall has started taking again.  He told us that Marshall's testosterone level is now at 23 (and when being treated for prostate cancer, it should go down to 0).  He thought this was a good thing because it can conceivably jump-start the Zytiga.  He wants Marshall to give the Zytiga at least three months to work.

We spent Thursday night with some good friends in Golden and we came back home today.  Marshall was -- and still is -- very depressed.

Dr. David Samadi

For those of you who follow the world of prostate cancer, there is a urologist named Dr. David Samadi, who is a world leader in prostate cancer robotic surgery.  He appears weekly on the Fox News Channel (with Dr. Marc Siegel) on a show called Sunday Housecall.  The show covers quite a few health topics but Dr. Samadi specializes in prostate cancer.  I almost never miss this show.

I just read that he is now collaborating with Mediterranean Hospital in Cyprus and he will be visiting Cyprus from July 20 to July 27, 2015, where he will perform robotic surgeries.  He will also be meeting with the president of Cyprus.

Like I said, for those of you who have been thrust kicking and screaming into the world of prostate cancer, you might want to keep up with Dr. Samadi and the wonderful work he is doing.  His website is www.samadirobotics.com .