The unrequested journey

The unrequested journey of caregiving, a gateway for self-study, learning, growing, healing, and personal transformation....I read that somewhere and it describes what this journey as an Alzheimer's caregiver has been.  I have learned patience that I never dreamed I would have.  I've always been a "let's get going with this so we can go on to the next great thing." sort of person.  Now my life moves at a snail's pace at times that may drive me crazy while teaching me to slow down and enjoy the moments.  One doesn't hurry an Alzheimer's patient!  It takes time for He-Who to process everything, every request, every instruction, every move.  So I have learned patience and timing.  I allow more time to get ready to go anywhere, to leave the house, to get in the car, out of the car, to the dining room.  

For the longest time after we moved here it bugged me that he always walked behind me when we went to the dining room or the mail box...several feet behind me.  I realize now that it could be because he is never sure where we are going even in our community.  He can't remember that we are going to the dining room to eat!  So now I walk much slower so that he is along side me.    Every time we leave the apartment must be a new adventure for him.

Oldest granddaughter graduates from high school

Today we drove to Clear Lake to computer shop with our oldest granddaughter, our graduation gift to her.  He-Who enjoyed every minute of it which made me happy.  He had little to say but was observing the whole process and didn't even bat an eye over the expense.  We followed the shopping with lunch at Red Lobster enjoying shrimp and those awesome cheese buttery biscuits.  A successful journey for all of us and always fun to hear granddaughter's plans for her future.  She's a determined young lady who will do amazing things I'm sure.

Another milestone

Oh my, but it seems like yesterday this blonde cutie was living with us and keeping us constantly entertained and here she is a high school grad.  A year early, no less after much hard work taking night classes and online classes along with a part-time job.  A real cause for celebration and He-Who loved every minute of it.  He was alert, attentive and managed to sit through all 550 grads getting diplomas after waiting an hour in the sun for the program to start.  What a guy!  We didn't get to bed until late so he slept 12 hours last night.

But today he seems to be really congested.  I'm hoping he hasn't caught his brother's terrible cough. I gave him some meds and hope they work.

 And he's disoriented somewhat...hard for him to get straight on what we did last night and little stuff about the security gate.  He got up and dressed eagerly to be ready for lunch with our other granddaughter and our daughter-in-law.  They came here for the graduation and to tour Rice University...a possible school for this granddaughter who graduates next year.  He Who enjoyed the lunch and was pretty chatty in the dining room.  It was so great to have them here for lunch and a visit before returning to San Antonio and I think they will return later this summer for another look at Rice...keeping our fingers crossed, of course.  She's also looking at UT Austin's Plan II program which I was in and I can't help but encourage that program and school as well.

A neighbor here who also attended UT's Engineering School when Ken was there questioned Ken about a professor this afternoon.  I was shocked that Ken couldn't remember anything about her...I had to fill him in that she was his mentor and advisor for his Master's and was the first female engineer to teach at UT.  He used to talk about her all the time.  His long-term memory has been pretty sharp so this was a surprise.  The neighbor printed out an article about her for him which was so nice as it brought it all back for him.  I love these moments when someone takes the time to help him out....very grateful as it means so much to him to savor those memories.

Rain and more rain

What way to spend a rainy Saturday afternoon is better than wine tasting in the Texas Hill Country? Here we are, a little damp, at Singing Waters Winery near Comfort, Texas.  Guitar playing in the other room and the rain coming down in sheets.  It was so much fun to relax and chill out with the family.  It had been way too long since we had done anything like that and we both loved it. And, of course, tasted some great wines and brought a bottle home.

However as the water continued to pour from the sky,I began to get anxious about our getting out of there and sure enough on the way back to I 10 the water was beginning to come over the roads.  When we got back to San Antonio, the sky was lighting up with lightening strikes which were really kinda pretty.  The next morning of course was when we heard the terrible news of the storm taking out the town of Wimberly.  I have weathered tropical storms and hurricanes and the flood in Houston and Alvin in '79 but had never seen water come down like we saw Saturday.  In '79 the Houston area got 20" in 24 hours and there was flooding but never has the city of Houston been paralyzed the way it was last weekend.

While in San Antonio, we toured some other retirement communities that offered continuing care with our son.  We revisited one that I had seen before but left less impressed that on our first visit.  The apartments have gorgeous full-size kitchens but no room for a table to eat on.  Very strange so crossed that one off the list.  Our daughter feels that it is time that we lived closer to one of our children and she may be right but we are just really getting settled in here and connected with new doctors (no small task).  We did find one Morningside community that we really liked and it has continuing care so that is a possibility on down the road.  The thought of getting He-Who acclimated to a new environment is daunting much less my finding my way around in a new city.  At the same time it may be wise to make the move while I can still drive and learn my way around.  Right now I'm tired just thinking about it and am going to play Scarlett O'Hara and "worry about that tomorrow."

Today is Thursday and they are still finding bodies and removing cars from previously flooded areas.  We returned on Tuesday between storms and made it home on back streets just fine...grateful to be home and living on the 2nd floor though no one in our community got any serious water damage.
We just attended the 1rst Annual Brookdale Dog Show...hilarious.  This dog's name is Angel.
I love being around them but so happy to not have one right now.

Dear Anne Lamott

 Dear Anne,

     Hi there from a devoted fan of you and your writing.  This is the obnoxious woman with the camera in the front row when you spoke in Houston.  If you will come back, I promise I will leave my camera at home...no, I can't do that but I will at least learn how to to turn off the flash and again I apologize for not knowing how before and being so annoying.
     Well, here's the deal...I would so love for you to write some more about loss.  I'm 78 years old and beginning to think that is just about all being old is about and it is just damn painful.  That is, it is painful if you give a shit about anything or anyone and I do and refuse to give up caring.  It is the caring that keeps me afloat as I have always believed that God's purpose for all of us is for us to live into our potential and support others in doing the same.  But in that caring comes the potential for loss and it is accelerated by aging.
      And it is constant when you live in a retirement community.  The good news is that while one is losing one's quick step, hearing, and one's vision dims, so are one's neighbors.  But along with that is other physical and mental problems that are more serious.  Eventually a friend or neighbor can no longer live independently and leaves.  An ambulance drives up on a regular basis...one day three were around.  The constant loss makes one hesitant to invest deeply in friends which is totally against my nature and another loss in a way.
     Add in one's own physical losses and the whole scene is rather painful and depressing.  No wonder so many elderly are on anti-depressants.  Surely there is a better answer.  Yes, I constantly remind myself of all the things I am grateful for...I'm not 78 in Katmandu picking through the pieces of my home to hold on to some semblance of the life I had before the quake....I am not living in a refugee tent outside of Yemen...I am not in California wondering if I will ever be able to water my grass.  I have so much to be grateful for but loss is always barking at my door.  I'm learning to deal with it and have found some other residents who are experiencing the same but it ain't easy.
    The greatest cure of course is to get off the Isle of the Blue Hairs occasionally.  The weekend in Colorado over Mother's Day without He-Who and being pampered by my niece and her partner were a huge spiritual lift for which I am so grateful to have them in my life.  And some retail therapy at the greatest shoe store in the country...Brown's Shoes in Ft. Collins...was once again wonderful.  I could become a shoeaholic if I lived there.  Such fun and funky shoes in narrow sizes!  And it snowed!
     Sunday we left the Isle and headed north to our daughter's in Conroe in their new apartment for a great lunch and a movie and a game of a new kind of Monopoly which was fun!
     This week I will drive us to San Antonio to go to a granddaughter's concert and hang out on the edge of the hill country and breathe deep.  I will be grateful that I can still drive and have such a great family.
      But dear Anne with such great wisdom and spiritual depth I would love to hear more from you about loss so if you don't have too much on your plate already, give it some thought.  I'm patient, no hurry.

With much admiration and appreciation,
Kay

Such a sweetheart

In spite of this crazy-making illness, Alzheimer's does have some beautiful moments.  And they are usually out of the blue.  Today while I was in physical therapy, He-Who walked to the HEB just out our front gate and had this lovely, lovely card to give me when I returned to the apartment.  No envelope but the thought was there along with the love and he remembered!  What a sweetheart and I am amazed and grateful for his love and thoughtfulness.
And I'm trying not to go into worry mode that he will wander afar while I am away but he wears a MedicAlert bracelet.  I'm convincing myself and him that all will be well.
And I will look at that beautiful card for a long time.

Depressed? Silly girl.

I keep telling myself that "I can do it, I can do it, I can do it"  but I tell you some days I just want to either scream and scream or go hide somewhere.  It has been a stressful 10 days.  My best friend of 45 years, Betty, who lives here on the same floor, had a health crisis last week.  Her children are scattered so here I am family along with another friend and left to figure out what to do.  Thank God for all the help that this facility can give in a crisis arranging for 24 hour care until we could get her into the hospital.  She has fractured a sacral vertebrae and is in a lot of pain, can't walk even with her walker.  So I was frantically arranging what was possible until her daughter arrived from CA a few days later...whew!  My friend is finally in the hospital and preparing to go to a rehab hospital for several weeks.  We are all relieved.

I did have a melt-down one morning last week.  An email came saying there was an opening left for the writer's retreat in Boulder that I have attended before and loved...I could maybe swing the tuition and room rent for a couple of weeks but not the care for He-Who.  And I realized I am really tired of being around all these old people with all their ailments and complaints.

He-Who-Sleeps-A-Lot doesn't deal with the change in how we operate very well.  For Alz folk change is threatening, confusing and discombobulating.  He is constantly questioning me, checking the calendar, checking the white board, then the same questions all over again.  Of course I'm exhausted from the whole scene with my friend which doesn't help my patience with the repeated questions.  The good news for me however is that Thursday I leave for CO where my niece and her partner will pamper me and my sister-in-law for four wonderful days.  The difficult part of this of course is planning care for He-Who.  He needs lots of warning and repetition of future plans, very specific details of future plans which we go over and over for days prior to the shift.  The original plan was for him to go to San Antonio to our son's home but we were unsure how that was going to happen....remember he needs concrete solid written instructions days ahead of how everything is going to happen.  Well, he also doesn't want to miss the Men's Group Bar-b-que that is going to take place here while I am gone.  So he decided he wants to stay home so that is what we are going to try with hired help coming in for 30 minutes in the morning and again in the evening to check on him.  Hopefully my daughter can come check on him though she is moving that weekend and maybe his brother can drop in on Saturday or Sunday.
.  There is always someone with bigger challenges than me and I have much to be grateful for...I can think, see, hear, walk, drive, sometimes write and make art, someone else cooks and cleans....not too bad for 78.  Stop your whining dear Kay.  Geez, it could be a whole lot worse!!!!

Geez, it has been a month since I posted on my blog and I would love to say it was because I had been so busy creating art or writing poetry but alas, not so.  We are in the process of changing doctors to ones that are closer to us in our new quarters near the major medical center of Houston.  We have hooked up with a geriatric team which gives us a new primary care doc but also means that we have to get acquainted with each of the specialists we need...eye doc, dermatologist, orthopedic doc, gastro-enterologist and cardiologist.  All this is very confusing for He-Who-Sleeps-A-Lot.  Lots of questions...where are we going?  who are we seeing? why are we going?  Is that the same as the physical therapist I see downstairs?  And who can blame him?  5 appointments in one week between the two of us and then a test or two thrown in.  I even struggle to keep track. It takes a lot to keep us old folks going.

He-Who has gained weight since we moved here...like two waist sizes which is great as he was too thin.  He loves sweets and dessert is always served here.  If on the table, he will eat it first. Alzheimer's patients lose much of their sense of taste with the exception of sweet and salt.  Before we moved, I seldom fixed dessert mostly because I have always struggled in the other direction.  In preparation for a trip to Austin for my 60th high school reunion this week, it was clear that he needed pants that he could button.  Off we went to Dillard's and he was just so cute...like a little kid in a candy store.  A beautiful clerk took over as our personal shopper and fixed him up with pants, shirts, socks and a great tie.  We topped it off with new dress shoes...at least now I don't have to worry about his wearing his dress shoes out in the yard and scraping the toes.  At least I don't think I have to.  All dressed up he looks so handsome!

Two weeks ago He-Who complained that his arm was really sore.  He hadn't fallen or hit it on anything and I've learned that it is hard for him to articulate what is going on.  On investigation I found that the source was an Exelon patch, a medication given for Alz that he had been on for at least two or three years.  The new doc had ordered one on his arm every day always switching arms daily versus the prior instructions to only use one every other day.  There was slight swelling under the patch and when I pulled it off, the skin underneath was broken out.  I reported it to the doc and so now he has been off of it for a couple weeks.  We started it up again yesterday and so far, so good.  Who knows what that was all about but Alz makes it so hard for him to articulate any aches and pains so I need to be alert..

We had a wonderful breakthrough today however.  Brookdale scheduled a meeting for just men to organize and schedule speakers that they are interested in.  There was a great turn-out and He-Who came bubbling into our apartment after the meeting with a new male friend to meet me!  Really nice guy, fairly new resident and both of them were excited about the prospect of future meetings. This man has more than 40 grandchildren!  All of them in the Houston area.
 Feedback is that Ken really contributed and has plans underway to call in some speaker from NASA.  I am thrilled as this is the first event that he has really participated in.  He goes to programs but only as a viewer.
And then we went to Happy Hour where there was some great music and danced and danced.  It has been a really good day.  I don't know if he will remember much of it tomorrow but I will and enjoy this precious memory.