Wow, I can’t believe it has been since Christmas that I last posted!  I guess it would be because things are being quite even and a nice routine has been settled into for us all.  I think that living closer to Marv so I can see him everyday has been a good thing emotionally for all four of us.  (We have to count the dog and cat.)  It is a bit of an expense but what would we rather spend money on?  Our intention was to enjoy time together whether it be traveling or just hanging out at an assisted living home where we can lay down together and have a nap.  Can I help it if that is so sweet to me?

Life sometimes makes us stop and examine what is important.  Maybe we don’t actually stop and think.  Maybe we get smacked in the head with events.  A precious, important life is unexpectedly lost.   I realize we are missing something in our mad rush to accumulate stuff and make money.  Sure, I know we have to have that to pay bills and carry on with living but I feel a sense of loss at what we forfeit in this struggle.  It makes me want to slow everything down and force myself to really experience moments.

Today I took Marv for a little drive over to Robin’s house and we sat in the deck swing while visiting.  The sun was shining though it wasn’t really warm out yet.  He made little comments about the cat and the angel statue and the birds.  I think he would have stayed there all afternoon but it was time for lunch.  He got right in the car easy as you please and was happy to be back where they put his meal right down in front of him when he sat to the table.  He ate every bite and was ready for a nap.  Anyone would love a Sunday like that.

Christmas Day 2011

Today I got Marv and brought him to the little apartment to see Sweetpea.  He was sooooo tired when we got here so I put him in my bed and he was so comfy and glad to go to sleep.  Beamer laid on his feet and I laid down by him.  Sweetpea came and got

on my side and Marv wiggled his fingers at her to say hi.  He slept for at least an

hour and 1/2 and I slept maybe 20 minutes.  But I laid there by him and was happy

all four of us could be together and comfortable for a while.  Not your traditional

Christmas Day but I liked it.

I hope you all could have a nice, sweet day as well.

We all need a hug now and then

Thanksgiving holiday brought two folks to the home for respite care.  A sixty-four year old lady with Down Syndrome and her father stayed at the home while their live-in caregiver had a much-needed break.  These changes are always hard on the regular residents but it was especially hard on Carol Ann, the lady with DS.  Yesterday, as I sat at the table helping Marv with his breakfast, she came and stood right up against me for a few moments.  Then she just reached around and clung to me like a small child.  As she rocked back and forth I said, “oh, did you need a hug today?”  ”Yeah,” was her reply.  Then she bent down and kissed my cheek before going back to watch tv.  I was so surprised at the maternal feelings that little incident aroused.  I hope she and her dad will be okay as they go back to their home and their regular routine.  Even though it was disruptive for Marv, I think I’m going to miss them.

Small Victories

Well folks, it’s time to get this story rolling again.  It’s been a rough spell here in Dementiaville.  Not so much that Marv is having more issues than expected, just that my own capacity for dealing with things has not allowed me to share my feelings or experiences in this past year.  Why is that?  I don’t have an answer but it feels like I may have traveled through the dark tunnel and emerged into a better place for sharing and hoping to help someone else who might be traveling this road behind us.

I know that more and more people are coming in contact with people who suffer with dementia.  I hear it everyday and each time I take Marv out to do the everyday errands we all take for granted as being normal activities.  I’m grateful each time we encounter people who are patient and sympathetic to our  situation.  One young man got down on his knees at a restaurant to be able to look Marv in the face and talk to him, not condescendingly, but with genuine empathy.  Remembering still brings tears to my eyes at this kindness. Perhaps there is hope for us as humans.

I took Marv to get a haircut.  First I asked the caregiver gal on duty if he had a bowel movement yet today.  Can you imagine?  Do you have to think if you have had a bowel movement yet today before you can think about going to get a haircut?  One doesn’t want to be caught not knowing where  the nearest bathroom is when those tell-tale signs of agitation start.  Yesterday reminded me that we have to be on our toes at all times with our  loved ones that are not in control of all functions all the time.

I had taken Marv for a short trip to Wal-Mart after lunch to get some air and look for a few items he needed.  A twenty-minute trip at the most.  As we  were leaving the store the agitation started and I knew we were in trouble.  After getting him to relinquish the shopping cart and get in the car for the five minute ride back to the house I was dreading the visit to the bathroom.  But, lo and behold, we made it in time, just barely in time and this was a moment of celebration and high fives for myself and the gal on duty.  We were all so pleased, including Mr. Marv.  I had to think  how things have changed.  How is it that the triumphant arrival at the toilet before it’s too late has become such a joyous moment for celebration?

I’m pleased at this point to be able to find such great pleasure in the adventures and especially, the small victories.

It’s been awhile.

It’s been some time since I have been here to make an update to our situation.  So many things going on and life happening, I guess.

First, a trip to Japan to visit the kids and grandkids which was great fun and a much-needed diversion.  Marv did just fine while I was gone for three weeks and even though he was glad to see me, didn’t seem to think it had been a long time.

Since returning there have been a bunch of doctor appointments, teeth cleaning, toenail clipping at the podiatrist, and regular check-up with his PC Physician.  All things are good so we have reached a nice plateau and holding steady again for a bit.

A new resident has moved in and she is a great addition.  She is 93 and really a pleasant person.  She apparently had some health issue and must be on oxygen always but she trots around with her long oxygen hose like it was no problem at all.  She will get up from a chair or the couch carefully but then take off at a pretty fast clip.  It reminds me of those little wind up toys.  When I come in, both she and Irene have a lot to talk about with me.  I’m glad they have each other for companionship and mental stimulation.

So it is the Christmas Holidays and I find myself wanting to be more and more with Marv and enjoy this phase of childlike pleasure with everything.  I opened a Dove chocolate recently, the ones that have a little saying on the wrapper, and it said “Give the gift of your time.”  Yesterday, I did just that.  Robin and I took Marv to the mall for shopping but I just hung out with Marv while she got some last-minute things.   We watched the little kids waiting for Santa and in the bookstore.  Marv was delighted with every child and would point them out to me and coo over how cute.  He laughed and we laughed and generally just had a great time.  Without the urgency to find things to purchase, the people and activity, sounds and smells, made for a pretty enjoyable time.

Back at the home, when I laid him down for his nap he wanted me to lay by him.  So I made myself relax and stay there for a bit, enjoying the comfort of him patting my back and repeating over and over, “I love you” as he tried to stay awake to be with me.  Soon he couldn’t keep awake any longer and as he was sound asleep, I slipped away to make the drive back in the snow.

See ya next time.

Happy Birthday to Marv!

What a great day it was Tuesday celebrating Marv’s birthday.  It’s amazing to me that an event like this can bring the residents out of themselves and they all seemed to enjoy the time at the table eating cake.  The husbands of the two other women came for the festivities and added to the nice chatter and attention for Marv.  He has always enjoyed that attention AND cake.

Deni  took the day off from her new job and went with me to see Marv and couldn’t stop hugging and kissing him.  Over and over she told him how much she missed him and was going to come see him more often.  What a fortunate event it was to find her when we truly needed her special brand of caring.

On the way home, I once again started into what I have come to call my “litany of regrets.”  I mentioned to Deni how I wished I had been stronger and able to keep him home and how I should have tried harder to find more help to that end.  She  quickly set me straight to the fact that things are as they should be and had I kept him home he may not be in this delightful phase.  I want the new character at home but that isn’t how he was at home.  I’m glad to be able to voice those things out loud and have someone to help me analyze and sort, to come to agreement that, of course, things are as they should be for all concerned.

On a humorous side note, last week as I was driving home, I was stopped by a train crossing with a bunch of traffic.  I glanced to my left and saw an older lady in the car next to me singing and dancing in her car.  Wow, that’s me, I thought, as I often do sing and dance in the car but not really so publicly and with such lack of caring should any one see.  I rolled my window down to hear what she was listening to and was totally shocked to hear a hip-hoppy pop tune being played full blast.  Something about boys in cars buy us drinks in bars.  Boys, boys, boys!  Too funny and not expected.  I liked it.

See ya next time.

Finally, some smooth sailing.

Changes have been made at the home and things are better already.  Regina and Les have been moved into their own room together at the other end of the house which seems to have made the difference.  Regina is calm and even happy at times.  She doesn’t see me and fly into a rage.  We even sat at the kitchen table together and had a few moments of pleasantness.  So for the moment we will continue with this arrangement while checking out other options to have something to fall back on.

We had a great family get-together last week and I took Marv to my sister’s house where the group were all going to meet.  The food layout was a big hit with Marv and he enjoyed standing at the counter eating fruit and veggies with dip to his heart’s content.  The home is on a very strict diet for the folks and the storage is locked with child locks.  So cupboard grazing is out for Marv.  Once in a while it is fun to watch him enjoy the treat of just eating with abandon.  I don’t believe ever in his life did he just enjoy food like he does now.

We stayed with the family group until about seven o’clock when he started looking very tired and I took him back to the home where once again he settled right in and was content.  I’m so happy that the family and friends continue to include Marv and enjoy his childlike new personality.  It’s great to have such a gracious, considerate, loving family.

See ya next time.