Tuesday, October 19, 2010

Tuesday - Uphill, A Little

You never know from day to day.  Our Hospice Visiting Nurse Beth said she thinks one of the hardest parts for caregivers is the roller coaster effect of the ups and downs of their loved ones.  I don't know - I'm always happy there is an up day, but I am frustrated at the down days even when I know there will be more and more of them.

Dad had a better night, but was still very restless.  Beth recommended adding additional anti-anxiety medication, which we will do tonight.  Dad slept from about 9:30 pm - 5:30 am, but when he is restless and talking in his sleep, he is not in a deep sleep.  He is easily awakened if we ask if he is okay.  I would like him to sleep deeply at night.

Dad ate much better today, and was able, for the most part, to feed himself.  I thought he looked a little thinner, then Beth mentioned it looks to her as if he is losing weight.  He had a little bit of trouble eating, getting grits on his spoon, and seeing his pieces of clementines, but overall he ate a good variety and a fair amount of his meals.  He is eating ice cream and strawberries as I type this.  He is not eating big meals, but does eat a good deal of ice cream in malts, with chocolate sauce, with fruit, and with oatmeal cookies!

He was a little more focused today, and had a decent conversation with Beth, although he was easily confused and thought she was trying to trick him, or "catch" him with all her questions.  When she asks how he's feeling on a scale of 1-10, he tries to remember what he told her last time, so he can give the same answer, not realizing she wants to know about any changes, not giving him a memory test.

Charisse came today while I had gone to the Village to get a few things.  Dave was here.  Dad declined his shave.  He is getting so he says no to the bath, so I have to insist, even though he always feel better afterwards and thanks Charisse for her help.

Not much news today.  The weather is gorgeous, Molly has brought us buttnernut squash soup and chicken & biscuits which were wonderful, Dave is at our couples book club tonight and I plan to go to a girlfriends' get together tomorrow evening for dinner.  I cleaned up the pine cones out of our yard and pitched some worn-out summer flower pots. Let's hope for an even better night tonight.

Monday, October 18, 2010

Monday - Downhill

Dad did not have a good night last night.  He was very tired when he went to bed, but chattered on and on - to himself - until about 2 AM.  Sometimes he seemed to be answering questions, sometimes he would come up with a word such as "assimilation" then spell it.  What was amazing was that he was speaking perfectly naturally with none of the hesitation and struggle to put sentences together he does during the day.  At 2 AM he said he was having chest and back pain, so I gave him the standard (smallest) dose of liquid morphine.  He was out like a light and snored for the next 4.5 hours.  When he awakened at 6:30, he was ready to get up, and not rest any more.

Dad was very groggy and sleepy, though.  It took 3 hours for him to take his pills, brush his teeth, sip coffee, let me wash his face, arms, chest and back and put clean clothes on him, then get in the wheelchair and roll into the living room.  Dave was helping!  He is very slow to follow instructions, and wants to "wait a minute" constantly.  Once he got into the Big Blue Chair, he ate a bite, maybe two of oatmeal, then slept until noon. He woke up long enough to eat peaches and jello, then fell asleep again until about 4.  He ate a few bites of pears, then a piece of bread.  He is now drinking a malt.

Dad seems to be very weak and uncoordinated.  He has trouble moving his feet, and I had to feed him his peaches and pears.  He could not get the fruit on his spoon.  Part of this problem may be his eyesight, but he is having trouble using his hands.

He knows he is having problems.  He asked me why he can't control his speech.  I told him I didn't know, but maybe he is tired.  Heck, I couldn't control MY speech when Mom, Molly, Geoff and Jon called me today.  (I cried -- it's hard to talk about Dad having so many problems, and his anxiety at night.)  He also seems to be having something going on in his throat.  He keeps clearing his throat, loudly and "roughly" and now says he has a sore throat.

I spoke to his nurse today, and we agreed Dad should get more morphine when he goes to bed, and not wait until 2 AM.  He can't rest if his mind won't rest.  Hopefully, he will be less anxious during the night and have a better day tomorrow.

He has been very polite, very complimentary of everyone that has been here to see him, and there's been no salty language.  However, he was just watching a commercial on CNN and started saying he was going to give the guy a punch in the nose because he deserved it (???).  His thought patterns have run the gamut and we never know what to expect.  My wish is for him to be comfortable tonight!

Sunday, October 17, 2010

Sunday - Libbie Leaves

We're back down to just the three of us - Dad, Dave and me.  Libbie left in the late morning after being a cleaning tornado.  I had hoped to get a last walk in with her, but the morning routine with Dad takes quite a long time - he cannot be rushed - so it was time for her to go as Dad was finishing his breakfast.

Dad's night was not bad, though he didn't really settle down until after 11, and he was up at 6:30, wanting his pain meds.  Lib gave him some, then he went back to sleep until about 8.

He was very slow and confused today, though I am searching for a better word than confused.  He mixed up words, and seemed very tired.  He slept for 4 hours this afternoon, then could not get a grip on what day it was or what time it was.  He ate very little today, though he is still asking for his malts and he drinks a fair amount of water.  He had no interest in the football games.

His left leg, the one full of clots, is looking very swollen, much more than usual, as is his foot.  He seems weak, and could barely get a glass of water to his lips to wash down his evening pills.  I HATE CANCER.  It is heartbreaking to see this 86-yr old Marine struggle so hard to stand up, turn around, search for the chair arms he can't see and have his hands shake as he tries to sip some water.  He has been extremely polite and apologetic for his weakness.  This is not how anyone should have to spend their last days.

Saturday, October 16, 2010

Saturday - Steve & Rita Leave

(Note:  I think I fixed the settings so comments can now be added.)

The Gang Green in Savannah is getting smaller by the day.  Steve and Rita left after our late breakfast.  Rita was the Kitchen Queen cooking and cleaning nonstop since she's been here, thank you very much!  Steve was wonderful with Dad, helping with every little thing, attending to his personal needs, listening to his stories and providing much needed comic relief.

Dad's night was too short last night, waking up at 4 AM then every hour until about 7 when the rest of the crowd decided to stay up.  Libbie and Steve went WAY out of their way to drive to McDonald's to get Dad his favorite sausage cheese biscuit.  They were half way home when they discovered the order wasn't right.  Back they went, reordered, and came home.  Unfortunately, Dad's sausage and cheese was on a McGriddle instead of a biscuit, but Dad ate every bite.  It was a lot of time and effort on their part to give Dad a special breakfast, which was very gracious of them!

Dad took a long nap after breakfast, and Libbie and I took a 3-mile walk.  Then we had showers, did catch-up work on our computers, and it was lunch time.  Dad woke up.  He complained of chest and back pain, which is getting to be a more common complaint.  We gave him a shot (by mouth) of his liquid morphine booster.  For the first time in ages, I gave him a lunch without asking what he wanted.  He started talking about peanut butter and jelly, but I already had a hot dog and mac & cheese on his plate.  He was perfectly happy, especially when Lib gave him a bowl of ice cream with the last brownie (from Rita) for dessert.

Then, surprise surprise, a box of oatmeal cookies arrived via FedEx, courtesy of Mom.  These cookies were shipped from St. Louis, where Mom and Dad used to get them during their high school days.  Dad was thrilled!  He asked for a malt to go with his first cookie.

It was football time - Dad snoozed on and off in the afternoon, possibly due to the extra morphine, and at one point wanted more ice cream but had peaches and jello instead.  He was wide awake and hungry again by 6.  We had salads and spaghetti bolognese.

Dad was ready for bed by 8:30, but we managed to keep him up for another hour.  He did very well in the transfer from big blue chair to wheelchair, wheelchair to bed, and sitting position to sleeping position.  He took all his pills without complaint and happily settled down for the evening.

He was very complimentary today of all his family and all we do for him.  He had some imaginative moments, handing me an nonexistent remote to put on the table, for example, but nothing major.  Most of his conversations were right on target.  It was a calm and easy day.

Libbie leaves tomorrow, and I'll miss her.  Besides being good company, she laundered all the sheets on the beds, did all the towels, washed a ton of dishes, made salads, kept me walking fast on our route, gave us an hour to visit some returning friends, and jumped up whenever Dad needed something.  She'll be here with Dad tonight while Dave and I go home, but she has strict orders to call if she needs help.  I hope Dad, and therefore Libbie, sleep well!

Friday, October 15, 2010

Friday - Geoff leaves

Kind of a crazy day today.  Dad had a good night, sleeping over 8 hrs. straight, so we expected a good morning.  He was congenial to everyone, yet would throw out some salty (and worse) language and could easily get irritated.   Rita made a great breakfast of cantaloupe, egg and sausage casserole, a hashbrown casserole, and buttered toast.  Dad ate a few bites then wanted to put syrup on everything.  I added syrup then he took the bottle and added more.  I wish I knew what was going on.  Is his sweet tooth having cravings?  Is he forgetting what is on his plate?  Approximately 30 minutes after breakfast he wanted a malted milk shake.  He put his recliner back to take a nap, but slept for only about 15 minutes, if that.  There was a fair amount of "commotion" with 7 people in the house, but we were all catering to Dad's needs.

He had a few very disjointed conversations, almost as if he was dreaming.  I gave him his lunch and he was almost through when Charisse and a new helper (a massage therapist) arrived.  We had to work to get him to get up out of the recliner for his bath - he would have preferred to sit and chat all afternoon.  As always, he enjoyed his bath and shave, and he loved the massage therapist rubbing his back.  They brought him back out to the living room to the big blue chair.  By that time, the visiting nurse and her nursing student were there to talk to Dad.  More people!  We agreed the current meds seem to be appropriate, and have made no changes.

Geoff had to leave for the airport, so said his goodbyes (waaaa) and Libbie drove him.  Even though Geoff had been here since Monday, I felt we didn't have enough time.  There was so much going on.  I still look back to our (Dave's & my) visit with Geoff and Betsy in early July and appreciate the time we had with them then.  This time it was really about Geoff being able to visit with Dad.  I was glad Dad told Geoff many times how happy he was his old buddy was there.

Then the nurses left.  I put Dad's recliner back, and he promptly fell asleep.  Rita and Steve shooed us out the door (as they did for dinner last night!!!) and Dave and I ran a couple errands.  Dad was still sleeping when we got home and I finally woke him up just before 6 pm after his 4 hour nap.  Dave had gotten ribs from Sandfly Barbecue, and we pulled together the potato salad and deviled eggs from Mom, fried potatoes from Lib, pork & beans from Dad's cupboard, and mac & cheese from two nights ago.  I ate quickly then went to play with Coleman while Molly took Chase to Country Day's Homecoming football game.

Steve and Dave put Dad to bed, and he was telling Peter Rabbit stories when I got home.

We do understand, and have always known, that small cell lung cancer often travels to the brain, and we are wondering if Dad is having some brain functioning issues.  There has been nothing definitive, but certainly examples of Dad not being Dad, such as the salty language and dreamy talk.  On a positive note, he holds my hand more often, which I like.  He also is telling everyone he loves them, which we all like.  Some things are better, some things are not.  Kind of crazy.

Thursday, October 14, 2010

Thursday - Libbie Arrives

This was another good day for Dad - not as great as yesterday, but again he was excited to see his company and was fairly chatty.  His mental clarity was excellent some times, not as good at other times.  He was delighted Rita told him she would be cooking dinner, and he looked forward to his fried chicken all day long.

He had slept well from about 10 PM to 4:30 AM, then wanted company again at 5:30 and 6:30, so the crowd was sleepily up by then.  Dave and I slept really well at home, not even waking up until after 7!  I went over to Dad's to see how the night had gone, dispensed the morning pills, then went back home to shower and dress properly.  By the time I got back to Dad's, Rita had made breakfast and everyone but Dad was finished eating.  We chatted a while and eventually took Dad back to his bedroom (he had been sitting at the table in his wheelchair wearing his bathrobe).  We got him washed up, in clean clothes and boxers, and convinced him to take a nap in his bed.  He became very confused about the time of day, I guess because he was in bed again.

Dave, Geoff and I went to do some errands while Steve and Rita stayed with Dad.  Rita had suggested Dave and I go out for dinner, and I took her up on her suggestion.  Dad overheard us talking, and he kept thinking we were leaving for dinner and a movie right then.

He eventually fell asleep, but napped for only an hour.  Steve and Rita sat in his room and talked to him for quite a while.  By then it was noon, Libbie arrived, and we were back from our errands.  Dad settled down into the BBC.

Rita and Steve went to Kroger's, then Rita did her magic in the kitchen.  Dad fell asleep and slept soundly for almost 3 hours.  Since he was well rested, we're now trying to keep him awake until about 10, so he will sleep even better tonight.  West Virginia football is on the television, so he's trying to keep his eyeballs focused on the game.

Libbie wanted me to tell everyone she's been a big help.  I asked her how...ha ha.  She just now served Dad his second bowl of ice cream.  She's going to stay in his room tonight, which I'm sure will help Dad sleep well, knowing someone is there.  She's also offered to take Geoff to the airport tomorrow.  She IS a big help.

Wednesday, October 13, 2010

Another Turn - UP this time!

I cannot believe what a difference there has been in Dad between yesterday and today.  Night and day.  Gone and back.  Down and up.  Yesterday he could hardly put a sentence together, and I was convinced he would never get out of bed again.  He didn't even sit up without assistance.  Today he has been chatty, clever, adding details to a story Dave was telling us about gladiators, sitting up in the Big Blue Chair ---

He had a great night, sleeping from about 10 pm to 7 am, with just an hour's interruption.  He was awake just in time to say goodbye to Jon and Jack.  (The goodbyes started my waterworks that didn't quit for quite a while.)  Dad was so glad they were here, and even after they left he was still saying how much he appreciated all they did for him.

Tuesday evening we started a new regime of pills - the morphine, a sleeping pill, and a change of anti-anxiety medication.  These changes, along with the catheter working like a charm, must have worked extremely well.  All the swelling Dad had in his feet, arm and face was gone this morning, and as I said, he slept well.  Let's hope this combination keeps it up!

Dad perked up as he woke up more fully, and I washed him.  He then had a good breakfast of grapefruit and French toast and took all his pills.  Then he wanted coffee (HOT coffee) and wanted to sit up even more.  Geoff and I were skeptical, but we helped sit him up with his legs over the side of the bed, and he did great.  Dave came home after taking Jon and Jack to the airport.  Dad wanted to go into the living room to his Big Blue Chair, and we thought he could handle it, so we got him into the wheelchair and then into the BBC.  He promptly fell asleep after all the activity, and slept for almost two hours.

He woke up just as Mom arrived.  She wanted to visit with him, and also help us out in any way.  She sure did!  She brought LOTS of food goodies from Costco - my favorite - and some homemade deviled eggs.  Thank you thank you!!!!!!

Dad and Mom chatted about high school, about their favorite oatmeal cookies, Dad's visit with Jack, etc. etc.  He was so on the ball, and I kept saying to Mom, I cannot believe the difference between today and yesterday, when he was so out of it.

Steve and Rita surprised us by coming today, instead of tomorrow as we expected!  I feel a little guilty sounding the alarm about Dad, as I think they hurried down, but I did wonder how many days Dad had left - until today.  Now I wonder how many weeks he has left.  Can you tell I am just amazed?

Geoff, Steve and Dave are putting Dad to bed right now,  and I just heard a big laugh.  It's been an amazingly good day after such a bad day yesterday.  I just wish Jon and Jack could have been here.  I am glad Mom, Geoff, Steve and Rita got to see Dad in such a relaxed and good mood.