Mom was awake and chatty late into the evening when I got here sat 14th
Tuesday heat and trying to stay cool.  Dad and I got the screens up the next day
mom looks like this most of the time
I waited for it.  She loves the Hospice folks.
Wed 18th, a chill in the morning air, but mom wanted to go out on the deck.  She was happy to be alone for 45 min or so
typical breakfast scene.  Mom is trying to read something, anything, meds brochure, newspaper. Often it looks like she can't focus.
and 10 seconds later, she'll read with focus and no glasses often.
Gerry is on the other couch.  Mary Kay stopped by.  She drove from Mass just to see mom and then go back.  She was here two hours.
This morning.  Dad filling his pill box.  He's on top of it.
See how this can get a little overwhelming?

Some things mom has said:

"I hate living like this."  (Tuesday)

"You must be sick of waiting on me."  (Thursday)

My first toilet assist with Mom:
Me: Mom, do you want me to pull down your pants?
Mom:  "Whatever"

Almost every time I put an ice cube in her mouth, she says "Mmmm..."  Dad and I burst out laughing every single time.

Cindy the Hospice coordinator told us that mom would likely start reliving memories out loud and it will look like talking in her sleep, except she'd be awake.  And just go with it.  So I'm sitting on a chair next to the sofa she is sleeping on.  She opens her eyes and looks at the pink rubber crocks she is wearing and asks me where her black school shoes are.   So I said they were in the kitchen and got up to get them.  I come back with a nearly identical set of pink crocks and ask, "are these the shoes?"  She says "yes, thank you."

Dad and I are watching TV, Bionic Woman I think. Mom is asleep and blurts out, "Put it in the box!"

Mom still likes big kisses on the lips.

She is also very polite.

Dad took a shower today and walked into the livingroom where mom is and she says "Ron, you smell good".  Sometimes her communication is sharp.  Other times it is mumbled.  But if you work at it, you can tell the difference between yes and no.  Sometimes water and ice is called water and water.  You can get the hang of it

While Mom rested, Dad and Molly and I mowed the lawn.  Molly took this picture.  I'm raking near the deck out back.
The information on this page is provided just as observation, mostly to give all parties involved a chance to see what is going on with mom.   

I add some of my thoughts.  They may have no bearing on you or taking care of mom.  But when I knew I was going to be caring for her, I couldn't have predicted how I was going to feel.

You can click on the pictures to enlarge them.

A few of these pictures show mom cheerful and alert, and similar pictures of her serious or frowning or looking down.   The smiling shots took a lot of effort to catch her that way.   She most often looks spent and tired.

In the pictures of Dad, he is filling his own pill box, without prodding.  He knows what he needs and what his numbers are supposed to be, and it looks like he's doing a good job. 

Mom doesn't walk.  She needs a wheelchair or careful handling and shuffling from sofa to bathroom and back.  She sometimes has enough strength all by herself to take a sip of ice water from a half full cup, smaller than a child's sippy cup. 

The daily routine is pretty simple.

Up at 5-530, make coffee, 
dad gets up, mom wakes up and needs to be escorted to the bathroom. 

Dad checks his blood sugar, (he's been on track) then we eat breakfast.  He or I will make breakfast. have coffee. Mom takes 1 or 2 bites of watermelon or mandarines or blueberries.  1 or 2 sips of coffee and 1 or 2 sips of ice water or Boost which is like Ensure.

I was pushing her a couple days back about eating... eat this, eat that, take a bite, do you want some more? She said "Marc, are you trying to get me to eat?"  I said yes.  She said "you don't need to do this.  I AM eating what I want."  We are at the table for an hour or so, chatting, dad does crossword, takes his meds, then mom lays down to rest.

9:30 or so mom's hospice CNA workers show up and clean her up, and change her clothes, and do something for her like soak her feet, do her nails, brush her teeth and partial, etc.    She has not had a bathroom accident while I have been here, but it is most likely around the corner.

10:30 or so her Hospice coordinator comes over to check moms condition, meds,  we chat about finding ways to make mom more comfortable. An example would be that she has no butt.  It was always flat, but now it's gone.  She's 91 pounds.  Since her butt is gone, her tailbone sticks out almost like a pugs tail.  As she sits or lays on her back, all human padding is gone so it's like an on bone.  It is under perpetual pressure contacting the sofa or chair.  So the Hospice care worker shows us how we can position her for sitting and sleeping on her side, to give her tail bone skin a rest. If it gets rubbed too much, it will break the skin then it becomes a wound needing a dressing like gauze etc. 

11a-4p she may rest or be sitting up, there are one or two bathroom breaks an there.  I'm doing some version of Laundry, Cleaning, Cooking, vaccuuming emptying the cupboards and fridge of outdated stuff, etc.. I mowed the lawn with dad today for example.

Mom likes ice cubes put in her mouth when she's resting.  That basically means kneeling by the couch and spoon feeding her at her pace.

If she is at the table for dinner, it is similar to breakfast... a small sample of whatever we are eating cut down to half a postage stamp size, mostly for sucking on.  She likes dinner mints.  Yesterday she asked for chocolate chips and lobster, so dad and I will have lobster rolls today and mom will get a couple pieces of real lobster. Apple sauce was a hit tonight...6-8 spoonfuls.

She spends all her sleeping time and resting time on the couch.  There is no more bedroom time for her.  She likes the wheelchair.  It's comfortable for sitting at the table or on the deck.  And she still likes the deck.  We may go out on the deck or sit at the table for a while after a bathroom break.

Her movements are about the size of three pieces of popcorn every second or third day.  We don't have to wipe her yet.  But the daily CNA visit may be doing cleaning mom is not asking us for.

in the evening, she may be sleeping as dad and I watch TV, but you never can tell.  She may laugh at something we say or answer when we ask a question...or not.  And she likes foot rubs, but won't likely ask for one.

She takes 4 pills at bedtime.  She rarely remembers to take them....because she is laying down from 5pm on.  I shoot for 10:30pm and possibly a bathroom visit, the last of the day. 

The last four nights she has slept through the night without needing a bathroom break.  When Anne spent the night saturday night, she was up at 2:30a and 4:30a.  So I have been fortunate.  I wait for her last bathroom stop up until about midnight before I go to bed.

We went for a ride around lake Auburn on Monday...about 1:00- 3:00pm.  after coming home she rested for the rest of the afternoon and evening.

She seems to be awake 1030-midnight.  Dad and I talk alot.  mom seems to pipe in at breakfast and late night.

Helping out with mom seems to be a game of inches, and a moving target. We made the mistake of giving her a piece of english muffin with peanut butter.  She sucked on it for 45 minutes.  That was a learning moment.  She never got a second bite of anything.  Now I'm making sure she has something soft chewable suckable meltable like blueberries, or watermelon, mandarins etc.  she enjoyed a couple salt and vinegar chips a few days ago.

If you are thinking about bringing food for mom, there is no need.  There is a huge amount of food in the house.  I've tossed 20lbs of expired stuff and it barely looks like I made a dent on the food.  And there are leftovers still from fathers day, and stuff they had before and fruits and veggies and a full freezer.

And dad likes to go to the grocery store regularly. He gets out. He drives. he shops.  he pays his bills. Until he can't do that, he and mom are good for food. Gerry and Michelle made lasagna and onion soup.  Thank you.  It will get eaten.    
There is nothing in my conversations with dad that resembles him killing himself.  He has a legitimate fear of not physically being able to handle the house by himself. Although he can go up and down stairs into the basement (and does laundry just fine), he needs to use extra care on the stairs....and so do I. They are steep going down into the basement. And Tom and I can attest, the steps in the carport require paying attention coming in and out.  Not because they are hazardous, but because they are not a conventional step height and depth.

Also, mom's social security is over $600 per month.  That ends when she passes.  That will make a difference in his household finances.

Dad is taking the Sertraline (Zoloft).  It's obvious he understands his situation, but he now seems cheerful and congenial despite knowing what is around the corner.  He asked me to get the pictures of mom ready for the funeral home who will turn it into a presentation.  And he asked me to help him with the obituary.  And it is the first thing he reads in the paper int he morning.

To be sure, having someone in the house doing the cleaning cooking laundry etc right now allows dad to be less overwhelmed by losing mom and losing everything she did.  My opinion is that having someone in the house needs to continue.  I leave Tuesday of next week. 

I suspect dad will get through losing mom.  He makes long term statements.  He is a blast to hang out with.  I think living alone will be a real problem for him at first.  The hospice folks helping mom are also helpful to him.  They help him with understanding his medications.  I did health insurance and medicare stuff for a living. I regularly dealt with seniors taking shoe boxes of medications.  This stuff is very confusing even when you are on your game.

I got the hospice folks to clarify what it takes for mom to qualify to go to a hospice facility.  It basically boils down to a few things.
1. Her pain increases and it exceeds our ability to manage it at home.
2. She becomes unresposive...she's in there listening and hearing but the words stop coming out of her.
3. There is a reasonable expectation she will die in three to four days.

Incontinence plays a role but it is usually connected to one of the three above.

Mom has no buring desire to die at home.  Her only concern is that if she needs help at the hospice facility, that someone will come when she calls.  The facility is properly set up to accommodate overnight guests and family.

A hospice facility would be a far more conducive environment for her last few days.  My understanding is that the average length of stay in hospice is 2-3 weeks. It is likely the hospice provider mom has will encourage all stay-at-home options available, as it will be in the hospice provider's best interest for selling durable goods like walker and wheelchair and bed, etc. if mom spends the most possible time at home.

There is more to talk about, but here is an overview of living with mom and dad right now.  Feel free to ask me questions.

Mom sleep breathing Tues 6-17-14 afternoon rest.