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.

Can it really be three months now?

Yes it has been three months since placing Marv in the assisted living facility.  My, how time goes by and driving back and forth twice a week has given me a lot of time for thinking and analyzing.  In light of recent events, it is probably time for me to step up and say some changes must be made if we are going to continue with this particular living arrangement.

Regina still is triggered into anger and aggression toward me when I show up to see Marv.  I still think she is confused that Marv and her husband are the same person as she was calling him Les in the latest episode.  Saturday evening upon returning Marv to the home from our visit at my sister’s home, I walked into Marv’s room to hang up his coat.  Regina was there on Marv’s bed and became very angry and started after me with the babble and jabbing her finger at me.  I just backed quickly out and shut the door so she couldn’t reach me and headed out.  She was in the hallway babbling angrily as I got out the front door leaving the gal to settle things.

Sunday morning when I arrived, Regina was sleeping on the couch and I thought that was good as I don’t like to have to feel uncomfortable with her.  Marv and I were sitting at the table looking at the paper when she realized I was there and all hell broke loose.  She came to the table and was stabbing her finger at me, telling me to leave and I’m no good and various other things I couldn’t get.  Then she took a pair of pants she was carrying and started trying to whip me with them.  Meanwhile I’m stuck in the corner between Marv and Les just trying to stay out of her reach.  Marv is paying no attention to her until she starts grabbing his paper he is looking through and he then throws them at her.  Oh boy, now we are getting Mr. Marv wound up which is not a good thing.   The caregiver gal is trying to do what she can to distract her and get her in the other room with no success.  She has to call to get permission to give her some medication to try to calm her but by the time this is happening, Regina won’t take it and keeps knocking her hands away.  I asked her to just get between us and I would slip out the side door to remove myself from the scene and see if she could settle down.   We accomplish this maneuver and when she is safely distracted into the living room, I slip in and take Marv out the front to go for a drive and reconnoiter the situation.  By the time we return, a second caregiver has been called in to help and try to reassure me that things will be dealt with and we can work this out.

I have concerns on several levels, one being that one resident who is always unstable and requires so much attention is detracting from the care that all the residents are meant to be receiving.  I feared upon placing Marv that he would be that one person requiring extra attention and have made arrangements for his medications to the point that he is happy and calm and easy to deal with from my point of view.   I don’t think it is unreasonable for the family of other residents to also try to make these arrangements.  I also need to feel that Marv is safe and not the target of her aggression when I’m not there to see and I need to feel okay about visiting him in his home.

So I guess phone calls will be made and meetings arranged to see if we can iron out this problem so life can go on with as much smoothness and calm as possible.

On a sad side note, Dee passed away on thursday, her battle with this disease is over.  May she rest now in peace.

See ya next time.

Observations

I was thinking on the way home from visiting Marv yesterday about how small children, when you don’t see them for a few days or even a week, seem to change so rapidly and make noticeable progress.  The reverse is true of the folks in the assisted living home.  In just a few days time the decline in several residents is so fast.

Dee, who broke her hip in the last few weeks and had surgery is no longer chirping away.  Instead she mostly sleeps and to see her sleeping is a bit scary as you can imagine she is not long for this world.

Irene fell into her closet and they had to drag her out all tangled in clothes and belongings.  Then the required trip to the hospital in an ambulance.  Her shoulder is all banged up and will most likely require surgery.

Les and Regina spend a good deal of time sitting out on the deck.  Les stares blankly out into space or at a paper in front of him while Regina yammers away.

Ruth, after the initial contact, has gone back to sleeping.

Shelley has moved to the new home.

Marv is still the most active and he seems happy and content.  When I walked in, he said, “Oh, hi sweetheart.  How did you get here?”  Then he gave me a great big hug and just kept hugging me which was nice.   He always tries to introduce me to the gals and we go through the motions for him.

Monday was the visit with Marv’s brother, Sterling and his family.  Sterling told him several times, “I’m your brother, Sterling.”  Marv would just look confused and shake his head no.  After about three times, Marv looked at him and said, “You know, you look a lot like my brother Sterling.”

We all had a great laugh over that one.  So things are somewhat settled and not too much going on but a nice comfort has been reached, I think.

See ya next time.

We’ve moved into a Fellini Movie

After two months, Marv has settled into the home and our existence has up-graded from Woody Allen movie to Fellini.  Such a bizarre assortment of characters we now have as family in the new living arrangement.

We have a husband and wife who both have dementia, Regina and Lester. Les was moved into Marv’s room as his roomy and Regina is at the other end of the house.  I believe she is abusive to Les as he doesn’t hear well and is constantly losing his hearing aid.  She yammers away at him and he just hangs his head like a whipped dog.  Since he doesn’t understand what she is saying, (really, nobody does) she gets angry with him.  She also does not like me for some reason and has made that very clear on several occasions.   Les is very confused about being in the assisted living facility and constantly wonders out loud when his daughter or son is coming to take him back home.

Dee is the little tiny bird woman with classic Alzheimer symptoms of word aphasia and absolutely no body fat.  She fell a few weeks ago, (or perhaps was knocked over by someone) and broke her hip.  She just got back to the home and now is in a wheelchair which is hard for her as one of her things was to be constantly on the move.  This is the little lady Marv called mom the first day we visited.

Shelly is a younger gal who suffered a stroke and lost most of her vision and the use of her left side.  Now she has seizures and is not able to take care of herself on her own.  She has a boyfriend who picks her up for the weekend and brings her back on monday when he goes back to work.  The last time I talked with her she said she was moving soon into a home closer to his house which had people more her own age.

Ruth is in the last stages of dementia and for the most part sleeps all the time.  I had never seen her awake until a few visits ago when she suddenly made eye contact with me and said some words to me.  I went over to her and held her hand for a bit trying to understand what she was saying and just making a little contact.  Her husband told me she was an ordained minister in their church and she likes for him to read her some scriptures.  Perhaps I’ll figure out some that I could read to her sometime when she is awake again or maybe a little hymn singing.

Irene is the newest member and is a delightful woman, still has all her mental faculties but is not very mobile.  Her husband was unable to care for her as she requires help to get in her wheelchair and up to the table to eat.  She is mostly incontinent and requires help in that area as well.  Her husband brings her the paper everyday which she reads and is able to carry on a conversation about current events.  I like to chat with her and the caregivers at the table as they are eating.  She is patient and waits quietly for the gals to help her even though they forget rather frequently that she has asked for help to get back to her room or over to the tv.   The other folks are much more demanding of their time and Irene gets lost in the shuffle at times.

All the caregivers at the home seem to enjoy Marv and he is always hanging out with them when I visit no matter what time of day I arrive.  One day they had the table pushed back and were dancing, one day bouncing the big ball back and forth, and on one occasion I found both Marv and Sandy, the caregiver sitting in the wheelchairs having a little wheelchair race.  So for Marv, I believe he is where he needs to be at this point and is mostly happy and content.  I take him out for a little lunch or over to visit with my sister and her husband which he enjoys but starts to get a little overstimulated after about an hour and then I know it’s time to take him back.  He likes his meals there and eats everything on his plate, right down to trying to scrap up the pattern on the dinnerware and eat that as well.   We still have a challenge getting him in the car and when that happens I just change my mind about going and we will try again next time.  It makes for a less stressful existence.

I have settled into living alone with a dog and a cat and keep busy with the yard and everyday maintenance while fitting in a trip to Idaho Falls about twice a week.  I think that will change to once a week soon as the drive gets to be a bit tiring.  I still like to be with Marv though, so I guess I just play that by ear.

See ya next time.