Preconceived notions true angels...

I was pleased when his daughter called to 'see' how dad was doing. I gave her the run down and said I was a bit swamped still with catching up with spending the last week in hospital with her dad and processing all of the changes with Hospice Care.

I told her that I had an aide coming out today to help sponge bathe her dad. She commented in a very odd way that she was happy about that and looked forward to him being able to do his showers and toilet things all on his own again.

What part of me doing most of that work for the past 4 years has evaded her?

She thought is that since he was released, he is OK. Meaning healed? Meaning all better? Perhaps. Cured. 

He was released because he wanted to go home and didn't care if he got better. He just wanted to be home with with Charlie, the birds, and his mules.

Today was another flurry of Hospice help. Rich got a 'bed' bath. Amazing what a home aide can do! He felt so good after that was done but also tired.

Jesse, a social worker, came out and sat with Charlie and I on the couch. We went over the paperwork again along with the slight change in medications.

It sounds like the nurse who will be in charge is visiting tomorrow.

I know it sounds like too much going on in this situation, but this is the way to get things started.

Since nothing much more is needed here right now, I'll probably be getting back to my regular blog for a while. 

"In this life we cannot

do great things.

We can only do

small things with 

great love."

~~~ Mother Teresa

This is how I feel all of the Hospice Team is treating us.

Finding Resources

ADRC, we are pretty lucky to have ADRC in our state. I'm not sure this organization is in all 50 states or not. However there is a very simple and helpful site on the internet called Eldercare Locator. Simply type in your zip code and a list pops up on the next screen with what is available in your area.

I had a very good meeting with Tricia from ADRC. Finding help or a support group for caregiver is daunting. When Rich had cancer the Madison VA offered a support group.... the drive would have been two hours one way for a caregiver's meeting and 'workshop'. Um.
Nope, that doesn't work.
Gunderson Lutheran in LaCrosse offers a once a month meeting for Stroke CareGivers. One hour drive.
Nope, that doesn't work.
The Tomah VA offers a once a month meeting for CareGivers to Veterans. Hour and a half travel time one way.
Nope, that doesn't work.


Tricia commented that they have a support group for CareGivers for Dementia and Alzheimer's patients. This may be a good fit as Rich has trouble with communication and memory too. I said I'd go. After all, meeting with other people who are going through similar situations can only be a plus for me. Besides that, it is 20 minutes from home and I get to see other people.

I know, that sounds awful doesn't it?
I've convinced Rich that we'd even try the Memory Cafe in February.

We quickly moved into other areas of concern. Tricia made a phone call to the VSO [Veterans Service Officer] downstairs and she came up. We went over some of the things offered by the VA.

My other concern was trying to get some assistance or help for my reluctant Mother in Law. She has declined in health and in her ability to do things for herself.
I'm having a tough enough time getting everything taken care of in my own place, let alone trying to take care of her and her place too. She has a once a month housekeeper. That is just not cutting it at all. Her little apartment was filled with trash on Christmas Eve along with mounds of dirty dishes. She just said she couldn't take the trash out and just didn't feel like picking up.

Anyway, there is a stipend that we can get through the VA to assist us in helping Mom. Interesting.
She could get help from the state and county if her assets were two thousand or less.
However, we can get some assistance through the VA because we are assisting Mom. Okay, it sounds weird, but it would allow me to hire a certified Home and Personal Care Helper ... well something like a once a week in home helper that could do light housekeeping, assist with running errands, shopping, and at some point personal hygiene. The average price for hiring someone like this is about $19 to $25 per hour. I cannot afford that for her on my own so this is an alternate choice.

It is cheaper to help an elderly person stay in their home and help them, than it is to transfer them to a care facility.
I know we had approached Mom to get in touch with ADRC more than once and she said no.
Now we have to tell her that WE will get her the help. I hope she takes it.
Yesterday I got called out of the blue with an urgent..."I need my pain prescription!" I ran to town and picked up the script and delivered it. I couldn't stay as I had to get back for evening chores and for Rich.

A quick glance around the apartment told me that she hadn't changed or made her bed in a long time. Her hair was matted and she basically looked pretty gnarly. She told me that her legs had swelled again so tight that she couldn't hardly get out of her chair.

We will be going to her apartment today or tomorrow and presenting her with the option of some help.
I can't knowingly let her live like this. Yet I can't watch over Rich and take care of her also...

Anyway.
I spent the next 2 hours with Cyrstal from the VSO office. We put some paperwork together for Rich filing also for Agent Orange. There will be no money for that, just getting his record updated to include his AO contamination.
Apparently the VA is accrediting COPD and lung issues along with a huge variety of cancers to AO. Good to have those on record now and not later.

The last bit of work I have to do is file to be Rich's official CareGiver. I will be taking a class through the VA but provided through the county office. This last filing if approved [lots of paperwork and a doctor visit] would assist us and 'pay' me to take care of Rich.
Are you ready for the huge amount?
Nearly $30 per week!

I will not complain. It may help out with groceries right? However the bigger bonus will be that I will qualify for respite care which I anticipate needing in the future. IF I don't take care of me, no one will take care of him.

So I am leaving anyone who reads this with a few thoughts.

Don't wait until it is too late if you have an elderly person in your life. See if you can sit them down and talk to them.
Do your research now.
Because ... tomorrow ... or in a few years, we will be that elderly person who will need these resources.

911 ~ What is your emergency?

5am on Sunday morning I awakened to hear a noise of someone trying to open the bathroom door.

That was so odd.  I was sleeping on the couch in the living room so I could keep an eye on Rich.
Apparently I was so exhausted from last week's events and Rich's hospitalization that I hadn't heard him get up.

I didn't grab m glasses, but ran to the door and opened it.
Rich was at the door desperately holding onto the door frame.

When he spoke, he sounded scared and desperate.

"I can't feel my right side," he said, his voice was a bit higher than normal and a bit slurred.

I can say that a multitude of things ran through my brain and they ended back up at the same place over and over.  

Stroke.

I put my arms around him and felt him shaking and trembling.  He couldn't move his right foot nor help at all with his right hand...the arm hung useless at his side.

I looked around and said to him, "I'm going to need you to hang on with your left hand to the door frame and I am going to help lower you to the floor, okay?"

"I can't move," he said, it was nearly a cry.  

"We need to get you safely to the floor, okay?  It is the only way I can call for help."  I grasped him tightly under his armpits and somehow we ended up on the floor.  I had no idea how I did it, but he was now safely on the floor.
I grabbed a pillow from the couch and laid his head on it.  I made sure he was laying on his side.
Somewhere in our yearly training for medical emergencies, I recall that we were supposed to lay a person on their side ... 

I jumped up and grabbed my glasses and dialed 911.  

I also grabbed a blanket to cover Rich in.  He was still moaning and crying. I knelt by him as the dispatcher answered.

Thank goodness, I was sure that it was the dispatcher who had grown up only a mile or so away from our secluded location.  He would be able to instruct the ambulance to our place.

"911, what is your emergency?"

"My husband who is a cancer patient who is receiving both chemo and radiation has no feeling suddenly in his right side.  He is now on the floor, conscious with a steady pulse.  He has complaints of numbness and seems a bit disoriented."
I spoke on the phone but have no idea who this totally calm person was that was talking.  I know it was me, but I didn't feel calm.

Yet.
I had to be totally calm.

The dispatcher asked for our address and I even gave him the letters ... 'E'... Edward...and the numbers distinctly and clearly.  Not a shake or shudder in my own voice.
Who was this person?

The dispatcher hung up and told me that Tri State was on the way.

I continued to monitor his pulse and his breathing and tried to answer his questions.
He was frightened, I tried to comfort him ... and held his head as I dialed his daughter's phone number.

Stephanie answered and I think our conversation went something like this.

"Stephanie, I think your dad may have had a stroke, I just hung up with the 911 dispatcher and the ambulance is on its way.  They will take him to VMH and I'll call you as soon as they have him in the ambulance."

I hung up with her and leaped up to push furniture out of the way.  I unlocked both the north door and the south door.  The south facing door was wider, a stretcher would fit through there.

In between making room I kept kneeling with Rich and holding his head.  I talked quietly to him and calmly to him.  

Fast forward:
At the ER admissions they asked me if I had POA for Health.
I pulled out the huge Estate Book and dropped it onto the counter, then flipped to Rich's Power of Attorney section, next I handed her the Living Will packet to copy.
I couldn't believe I was actually having to invoke POA.  My heart fluttered and I felt the walls closing in on me...
How bad was it?  What was happening?
I took the paperwork back from the secretary and she let me in to the ER room where Rich was 'stashed'.
He'd been taken for a CT scan.  

The attending doctor said the scan showed no brain damage which was hopeful for a full recovery.
He then proceeded to call the Madison VA Hospital to make arrangements to send Rich via another ambulance to there once he was stable in Viroqua.

I called Stephanie and gave her the information.  Still ... this calm person was talking.  Stephanie asked if I was okay.  I replied yes... and was she? She answered yes also.  Then she said, "I'm numb."
I agreed, that was the best description of what I was feeling.

Emotionally detached, yet concerned, and full of an empty numbness.

Steph and I put a plan together.  She'd meet him at the ER in Madison as she was closer.
I'd go home and make arrangements for some neighbors to do the farm chores and have the farrier or someone run over and put a round bale in with  5 mules.

After making arrangements, I grabbed Rich's CPAP, some clothes, his blue folder [it has a calendar with all of the appointments in it], the Chrome Book, clothes for me, Rich's VA ID, and two bottles of water.

I shut the door and started the Subaru.  Then proceeded to take the longest drive of my life.  Twice I had to pull over and regain composure.

On the way in Stephanie called, she gave me her dad's room number and I simply asked.
"I need to stay with you tonight.  No way can I go back to the house, okay?"

By the time I'd made it to Madison, Rich was able to move his arms and legs.  His right eye had some blurred vision and his speech was clear as a bell.

That night after we got to Steph's house and I had some pizza...oh, did I even eat that day?... Hmmm, I don't think so...

After eating I went over and lounged on their couch.
I woke up much later.
And went to bed.

So many questions, so many unknowns.

Update ~ Mental Health

Well the powers that be finally did transfer him to the Mental Health floor.

It is a lock down floor.  It didn't used to be this way, but changes over the past few years have made it so.

My husband's room has no shades, blind, curtains.  No door to the bathroom.
His bed is bolted down.  There is a chair, it is steel and bolted to the floor.
There is no patient phone.
All calls are screened through the nurse's station.


His room is locked.  He can open it up and ask to see a nurse.  Nurses access him by key.

He is not bothered by this as he feels that his cell is a safe place for him to be.

His team of doctors that saw him this morning told him that he needed to socialize.  He said no.  The last thing he wanted to discuss was war stories with other vets.  He just wanted to be left alone.

I know, you are probably thinking that this is anti social behavior, and yes it is.  But he feels safe right now.  
He has made his radiology treatments and says he must be prepared to do chemo tomorrow as he wants to do it whether he is in the 'right place in his head or not'.

He told me that this cancer is not going to beat him.  At least this is a good attitude today.  We have talked often on the phone.

He cannot use his CPAP at night unless his door is open and there is a nurse sitting in the doorway.

He feels bad about that and has decided not to use his CPAP.

His chemo is at 8am tomorrow morning and I will be there to support him.

We are wondering if he'll be discharged on Friday.  We will know Friday.

His daughter and son in law are bringing a futon to put in the living room so he won't have to negotiate stairs for the next few weeks.  They are also coming armed with weed whackers and other tools to help get the yard whipped into shape.

Today I bought a used self propelled mower and started hacking away at the yard.  Last night our wonderful neighbor walked down and started on hacking the grass around the house.

Looking at a nicely mowed portion of yard relaxed me in a way I haven't felt in weeks.  Odd isn't it?

The fellow that we deal with regarding lawn mowers will come out Saturday and give me a lesson on the Country Clipper, which is Rich's pride and joy mowing monster machine.

Back to Rich.  I'll be there for chemo and radiation and then I think I can stay and visit him on the floor or under nurse supervision in a common area.

He is looking forward to the visit.  But is having a hard time with feeling love for me.  He shuts down his feelings while under stress.

The thing is, he still understands what he is doing and knows that he needs help.  We call it Building Emotional Walls.  I'm okay with that as I've been through this before.

~~~~ Update...
Rich will be coming home for the weekend!

Small Victories

Yesterday's visit with Radiology was quite surprising.

Rich's weight had only gone down 2 pounds since last Monday.  The Radiology Nurse felt that it was a job well done considering the week before he'd lost 8 pounds in 4 days.

I was shocked myself but very pleased also.  It meant we were doing something right.  
I'd been making shakes out of fruits, yogurt, ice cream, ensure protein & calories booster powder, and milk.  I'd made different blends and he'd been drinking a glassful of it whenever he felt like it.

I'd made home made macaroni and cheese and he'd eaten that in small meals whenever he wished.  Frequent small meals.

Anything that he felt like, he grazed on.  Sometimes it was good food like an apple, and sometimes it was not so great like a Hostess Cupcake.  

His energy level still concerns me.  He is so exhausted that he stays in bed almost all of the time.  I was reading the side effects of Cisplatin and extreme fatigue was one of them.  I'm not sure that staying in bed as many hours as he is, is healthy.  It causes him to be more depressed or is it depression itself?

Hard to know.

But yesterday's visit was a positive one.  Nurse coordinator Jackie from the UW told Rich as long as he could keep his weight up he didn't have to worry about the Jevity.  Of course I got the smug glance from him!  That is okay with me though.  I thought I was doing the right thing, but since we'd kept him from losing more than 2 pounds, I figured it was a victory all the way around.

Rich's daughter had emailed me very early in the morning that she and the kids would be coming to visit in the afternoon.
She thought she'd take Rich for Chemo and Radiation today and let the kids stay with me.

I welcomed the company and the offer.

This is exactly what was needed for a Care Giver break.  I get to do things with the grand children all day and rest a bit.

Steph and I worked most of the afternoon on trying to figure out what meals we could cook up for her Dad so that he could graze all day.

For supper I made a huge pot of spaghetti and some garlic bread.  I cannot say enough how much of a pleasure it was to sit and eat with other folks.

Then Rich ate two small helpings and I felt like jumping up and down. Another mini victory.

Today is Radiation and Chemo day.  Steph is an angel for coming to the farm and staying.  She really saved my sanity.

Small Victories.
One day at a time.

We've Got Your Back!

We walked into the waiting room for Radiology.  Our trip to MAD City was quiet.  Rich slept, he was miserable but quiet.
After his treatment, we saw Dr. W, who felt the lymph node and commented that it was already receding.  This was great news!  I felt ecstatic.  My husband-patient however was miserable still.

Dr. W mentioned that by next week Rich's mouth was going to start feeling the effects of the Radiation Treatments.

We made it to the VA with time to spare.

Rich's labs were good, his white count was fine...
Then we entered the Infusion Lab and when Ronnie the nurse asked Rich if he wanted water and went to get it, I followed her.

I told her what had been going on.  I told her about 'nausea-not nausea argument' that we'd been having. 

The way he got impatient with the Jevity and pushed it into his stomach and then the horrid diarrhea that he was experiencing.
I also mentioned that I thought he was hitting a major block of depression.  "Well who wouldn't be, right?" I asked.
Ronnie told me that she'd address everything with him.

First thing she did was weigh him and then question him about what was going on.  She was like a drill sergeant with her questions.  

Finally she leaned back and said to him, "If you continue like this I will admit you to the hospital.  I can do it today, if you like."

Rich shook his head.

Then Ronnie carefully explained that the anti nausea meds that are given intravenously with the chemo treatment last for 72 hours and everything he was telling her was right on for the nausea catching up to him and his refusal of taking his nausea meds only made things horribly worse.

She told him in no uncertain terms that he needed to have one can of Jevity EVERY night this week.  Starting next week, two cans.
Any meals missed = one can of Jevity.
She arranged for us to receive 'Kangaroo' bags to put the Jevity in and hang from an IV pole.
Ronnie then explained that Jevity needed to drip in slowly to his stomach because if it was 'pushed' in, it would cause severe diarrhea.
Bingo.
Rich's impatience had contributed to his awful bout with that...

Ronnie suggested setting up the pole and bag, kicking back on the couch and watching a movie while his liquid 'gold' dripped into his stomach.

Ronnie went on to say that he needed to get out every day and take a small walk of some kind.  He needed to have fresh air and see the clouds and sun.

One word about Ronnie.  She is kind, sweet, and overflowing with compassion regarding her patients, she cares for them and it shows in her eyes.  She knows how to be a hardass when it is warranted.  And she knows how to deal with Veterans. 
She is priceless.

She told him that IF at any time he couldn't eat, or he couldn't control his nausea, that HE should call the Oncology number we had 24 hrs a day and a nurse would get back to him.
Not only that, we were next door at the UW Carbone Cancer Center 5 times a week...so...
IF he felt ill any day, come immediately to the Infusion Clinic and they'd make room for him.

What we had been going through could have been avoided.

Boy, did I feel like a dumb-ass.  I told Ronnie that.  She shrugged and told me that I was normal.  This cancer treatment thing had a learning curve.

Rich had been dehydrated and sorely needed the IV hydration that he was given first.  He really perked up with that and ate pudding and drank juices and ice water.

Ronnie was busy making phone calls around the VA and even got us in to see a Mental Health Counselor before we went home.

We made the trip home after an 8 hour day spent at two hospitals and clinics.  

One of the things I won't go into here is all of the different medications Rich is getting.  Each person is so different in what kind of cancer they may have and what will be given to them.
As we were told by the Nutritionist yesterday, there is such a delicate balance of trying to make the patient as comfortable as possible during treatment.  Medications would be changed and adjusted according to how the patient was doing.

It may also be important to bring along a voice recorder so both the cancer patient and the CareGiver can review what was said.  I have found that to be priceless.  I haven't run across a nurse or doctor yet who wouldn't let me use it.

We spent an hour with a counselor who helped address the Depression issues.  

Day 6 of radiation completed.  Day 2 of Chemo completed.
8 days into treatment.

Most of all, don't lose hope and know that if you are getting treatment, there are people who will have your back.  I imagine this is true for nearly any oncology clinic.
I think this was the most important thing I learned yesterday and it was such a relief.