Time Has Not Made Things better...

My apologies, it has been over a month since I have written anything.  I tried a couple of times, but it just wasn't coming.  And I apologize that this one is so long. But let me catch you up.  On January 10th we had the monthly Sista's Lunch and it was the best day that Pam has had in months!  The day didn't start on a good foot, as Pam was up at about at 3:30 am and it appeared that we were going to have another bad day, where she sleeps on the couch all day.  

For those unfamiliar with  Sista's, Pam is the second oldest of six girls.   When we moved back to NH, she mentioned that she was looking forward to spending more time with her sisters.  For whatever reason, that didn't really happen.  They would get together for one another's birthday, but not much contact otherwise.  So I decided to host lunch once a month.  It got the sisters together more often, satisfied my love of cooking for others, especially family, and it gave Pam another opportunity to exercise those brain cells that were slowly being strangled by the Lewy Body Dementia (LBD).  They have been a rousing success.  After a while we invited my sister to join the festivities.   She fit right in and enjoys the encounter.

The day started early, which is not unusual for a LBD patient.  Many times their sleep patterns are erratic with a lot of daytime sleepiness and night time restlessness.  And throw in some hallucinations and delusions just for fun.  She woke about 3:30 am and went to the couch.  I turned the TV to Bones and she was in and out of sleep for the next few hours.  I woke her about 8:45 to get changed into street clothes because the hospice nurse was due in one-half hour.  They met and had a pleasant one-sided conversation, as Pam didn't say much.  When the visit was over, I went back to prepping food for lunch and Pam went back to snoozing in the recliner.  

Pam's sisters starting arriving around noon.  Pam perked right up.  She was chatting, laughing, and reminiscing with her sisters, and my sister for much of the afternoon.  She really loved the appetizer, loaded potato crowns (really McCain Baby Cakes).  When the main course came out, Pam was on her third helping of the appetizer.  I have not seen her eat this much in weeks.  There was one point in  the afternoon that I thought she might nod off, but her sisters got her reinvigorated.  One of our daughters even noted the improvement in Pam's posture.

The next social event was a week later when my niece came to visit from Atlanta.  Michele is only six years older than our oldest daughter.  When they were young, they spent a lot of time together.   We often refer to Michele as our fourth daughter.  

We were hoping that Pam would have another good day so that we could all go out to eat somewhere.  But we had a contingency in place if that didn't work out.   I got Pam up and dressed and we headed out for lunch.   Pam was doing very well interacting with the grandsons during the lunch, but you could see the mental fatigue set in as the afternoon wore on.   By the time we left the restaurant, Pam was pretty much wiped out.  We had a lot of trouble getting her coat on because she wasn't able to follow our directions.   But the lunch was worth the effort.

Despite the fact that Pam is on in-home hospice, we are trying to keep her as socially stimulated as possible.   The next social event was a Olive Garden birthday gathering for Pam's older sister.   Again, Pam's attendance was dependent on what kind of a day she was having.   I was able to get her up and dressed in time for the visit from the hospice nurse's weekly visit.  That went well and her vital signs continue to look good.  So after a short nap, we were off the Olive Garden.  One helpful aspect of this event was the presence of her Home Instead caregiver, Laura. 

We continue to have a care giver from a local agency here three days a week for four hours per day.  This gives me an opportunity to attend to other things like grocery shopping and doctor appointments or just to be on the computer for a while without having to worry about Pam.  We have a had a number of caregivers here, but the current one has done an outstanding job with Pam.  She is able to get Pam to take a shower, exercise, and do some sticker books.  Even more, exciting is that she is able to talk Pam into going outside for a walk.  You can see Pam's face light up when Laura comes to the door.   While the work she does with Pam and the creating of free time for me is all very important, the cost is significant and it is all out of pocket.  She even gets Pam to do funny things...

We are now about a month into in-home hospice.  For those that are unfamiliar with it, two doctors have signed off that they believe that Pam has six-months or less.  Not really a thought that I am interested in entertaining but it is the reality.  Personally, I think it is longer than that, but that is only gut feel.  Even her primary care doc is amazed at how quickly the symptoms have progressed.  As I have said numerous times, I can not change the destination, but I can certainly influence the journey.   Pam has no sense of time.  She can read a clock, but her brain just can't understand it, especially duration.  Her biological clock is screwed.  She is often up early morning and then sleeping all day.  A recent trip to a local restaurant was trying to say the least.  It took fifteen minutes to arrive at a meal choice.  Her brain can no longer process multiple choice questions.

Recently things have gotten worse.   Lewy Body dementia includes Parkinson's symptoms.  She has lost most of the range of motion and strength in her legs.  She needs assistance getting dressed.  She often tries to move around the condo with her eyes closed.  Her footsteps are four to six inches long.  Worse yet, her ability to communicate is diminishing.  Often, if you ask a question, she looks at me but does not answer.  For example, I woke up at about 4 am with her whimpering.  I spent fifteen minutes trying to ascertain what was bothering her.  Was she in pain?  Where did it hurt?  No answers.  I finally convinced her to change into dry PJs.  Maybe that was it because she soon feel asleep again.  It is just so hard for the caregiver.  My job is to keep her comfortable and safe.  But it is hard when they can not communicate.  It is like working with a crying infant.   Only the infant is 74 years old.

The decision to keep her at home was hers.  Many in the support group I am a member of have made the very hard decision to move their loved one to a care facility.  And almost to the person, they say that they waited too long to make that decision.  To them I say, I hear you.  I really do.  Maybe when she no longer knows where she is.  But this is what she wanted.  And just as I am living up to the promises I made almost 52 years ago, I am going to live up to this one too.   One significant effect of that decision is the emotional impact on me.  I am wiping away tears several times a day.  It is so hard to see how this disease has taken the person that I married.  Even our two oldest grandsons, the ones that spent the most time with Gmom, are emotionally affected by what they have seen.   

Our three daughters  have been wonderfully supportive.  And I have had several neighbors and friends offer to help.  I really appreciate the offers.  I may call upon you at some point, but I am handling it at this point.  I even got her out for a short walk today.  I continue to be thankful for every day that we have together.  I steal hugs every chance I get.  When I reflect on our time together, I feel good about how it turned out.  Our daughters are all productive citizens and two of our grandsons are finalists for Youth of the Year and Junior Youth of the Year  by the Boys & Girls Club of Manchester.  It is obvious that their parents have done a wonderful job raising the future citizens of this country.  We are immensely proud of our three daughters and their five sons.  However this ends, I feel like we will leave this place a better place for being here.