Caregiver's Lament

Caregiver’s Lament

The bracelet labels me “Caregiver,”

gives me an ID number

labels me as one who looks after someone with memory loss.

But there are some days now

when I don’t want to “care,”

don’t want to answer the same question for the tenth time,

days when I try to find the courage

to say no to another trip to Starbuck’s,

days when I don’t want to explain which is the phone,

which is the TV remote,

days when I tired of coaxing him to eat,

to take his pills, to brush his teeth,

days when I have ask him not to wear his pajama top to church

even though he calls it a shirt,

days when I’m tired of being angry and frustrated

when I am lonely and miss the brilliant, funny man I knew.

There are days when I want to take off that cloak, that bracelet

and travel to an exotic landscape if only in my mind,

when I want someone to ask me if I would like to go for ice cream

or would I like to watch a movie?

when I wish someone else would take out the trash,

days when it would just be nice to be remembered

days when I wish someone would take care of me.

A neighbor moved today

A going away party for my lovely neighbor, Elizabeth Lanham, in the blue print blouse.  She is 90+, sharp as a tack and going back to Gatesville to live with her son.  I will miss her and the irony of living next to my maiden name but there will be an enclave of Lanhams up near Dallas where quite few of my Lanham relatives live already.  He-Who, in the background, had a fair time at the party but left early.  I think the estrogen level in the room must have been overwhelming, plus he has difficulty hearing and understanding in a room where there is a lot of high decimal chatter.  Geez, so do I sometimes!
I'm going through file after file and throwing away and shredding.  Fortunately our office will shred for free.  How does all this paper accumulate!!
Our TV is not working correctly and after an hour with Xfinity/Comcasst they finally decided to send a technician but not til Monday.  Bah humbug!
Better go check the fridge...I asked He-Who to put away the soup container and sometimes stuff ends up in the freezer.  He has the hardest time with any kind of directions in spite of my efforts to make them simple.
He was a happy camper yesterday.  We found him two new Hawaiian shirts at Walmart and he loves them.  I'm for anything that is wash and wear!  :)

Communion

We don't often get to church and I so miss our wonderful congregation at the Bay Area Unitarian/Universalist in Clear Lake but I'm finding there are many other opportunities to practice our faith.  One has come up recently with my neighbor.  I will call her Beverly, at least 10 years younger than me and declining rapidly with dementia.  Her sister, Alice, is here for the second time in the last 9 months to look after her. Beverly has been very reclusive since we met her two years ago, seldom eating with others in the dining room and never attending any activities.   The few times I have seen her she wore a "deer-in-the headlights" look.  Alice lives in North Carolina, a retired nurse with an adult son who is autistic.  She has been here now for several weeks getting her sister through a gauntlet of tests.  Alice wants to move Beverly to NC and has located a pleasant assisted living facility not far from Alice's home but Beverly is resistant, of course.  At this point Alice is pulling her hair out trying to deal with it all and has been shut in her sister's apartment helping her dress, etc.
     I ran into Alice taking a walk for a break and invited her to call or come over when she needed a glass of wine or a hug.  And she called!  I had just made a batch of brownies and invited them both over for wine and brownies.  Beverly doesn't drink alcohol any more which is a good thing but was happy with a cold Fresca.  And Alice talked and talked and He-Who so enjoyed the visit.  I did what I could to support Alice and the move going through all the reasons why we are moving to San Antonio.  Beverly sat listening but said little.  Alice calls her by the nickname of "Bev" and when I hugged her goodby, I asked if I, too, could call her Bev.  She smiled and said, "Of course, you are family now."  Mission accomplished!!!
      On reflection I thought we had just had communion shared with love and compassion.  And this is what it is all about.  And it was so good for He-Who to feel that he was helping and contributing.  And he showed them the new book with the dedication to him.
     Later I ran into Alice again and she thanked us once more and said that was the only social event she has had here.  Damn, this disease can be and is so isolating for the victim and the caregiver.

Reeling and sad...what has happened to America?

      OMG, what a horror!  This terrible mass shooting has left me shaken to the core!  And certainly has a way of putting my life in perspective!  I can't imagine what it must be like to be the mom waiting outside the Orlando hospital for word on her son!  My heart bleeds for her and all the other families sent reeling by this latest senseless murder of dozens.  Why cannot we put an end to these massacres?  Why are assault rifles available to civilians or in this case, someone already on a list of suspicious ties to ISIS?  What happens to a young person to fill them with such hate?  And I can't imagine what other countries must be thinking as they observe our armed population and the arrogant, racist bully who has become one of our presidential nominees.
      My life as a caregiver seems simple in comparison and I can better appreciate the isolation and insulation we find here on this Island of the Blue Hairs.  Now my task is to prepare for the future move to another Island on the northwest side of San Antonio.  We signed a lease last week for a projected move-in the end of September or October.  How did we accumulate more stuff in the 2 short years we have lived here?
      He-Who-Sleeps-Alot had a great time last week in San Antonio at our granddaughter's high school graduation.  My daughter-in-law and a friend had a large party to celebrate and we both enjoyed meeting our granddaughter's friends and their parents and grandparents.  He-Who was quite sociable chatting with guests and I doubt anyone suspected he would not remember any of them the next day.  But he did remember he had a great time and I am so grateful for these moments of joy.  My DIL knocked herself out cooking for all of us and making sure we all got where we needed to be at the right times.  Love that woman!  I'm finding my son to be an amazing host as well and he is having such fun with his new outdoor kitchen complete with a TV...his outdoor man cave that produces delicious grilled shrimp.
      Darn my stupid back...went bizzerk the morning of graduation so I was kinda limping along but managed to make it through all 600+ grads and home again.  It isn't a new problem as I have ruptured discs in my lower back but it certainly was inconvenient and still bothers me.  My regular orthopedic doc has left the practice and I can't get into another until July 13.  I kept thinking I would wait until we moved but realize I better get it attended to ASAP.  I managed to drive home from San Antonio but have been babying it ever since with heat packs.  But again, looking at Orlando, I'm trying not to complain and He-Who is happy to do any lifting.

      He-Who had a wonderful surprise on returning home.  Four copies of the latest book, Space for the 21st Century, edited and published by his good friend, Langdon Morris, from the Aeronautical Technology Working Group that He-Who formed years ago.  It has a beautiful dedication to He-Who as a leader in aerospace...brought tears to my eyes and certainly gave him a boost.  It means so much to both of us to have his tangible legacies.
     So much to be grateful for.....we are blessed indeed.

My sweet, always gallant husband...

Alzheimer's may have taken his short term memory but he is still the gallant man who loves to help.  He is the one who charges ahead to open doors for those with walkers or wheel chairs or move a chair in the dining room to assist.
Once again more dining room humor:  A dear 95 yr old woman joined He-Who, another resident and me at a table for four.  She mouthed "I can't hear anything" and pointed to her ears.  Oh dear, the other three of us are thinking.  It seemed she couldn't talk above a whisper if she can't hear...strange.  The more she indicated that she couldn't hear, the more concerned the rest of us, especially He-Who.  She kept mouthing how quiet it was but she managed to order lunch and ate well.  I wrote on a napkin that perhaps she should contact her daughter and that we would help her do that.  "No, no," she mouthed.  "My daughter is coming.  I am fine."  She finished her lunch and left leaving the three of us debating what to do and with questions like "did she have a TIA (mini-stroke), should we go with her, should we contact the nursing staff?"  He-Who insisted we go down and report it so the nurse would go by and check on her.
That evening I went to play Mexican Train Dominoes with friends and mentioned the incident.  "Oh, she does that all the time.  She forgot her hearing aids again."  Whew!  Good grief!
End of story of life on the funny farm.

And in the Dining Room...

Geez, you just never know and it is bizarre how one makes the adjustment to life's fragility.  People appear and disappear around here so often.  Yesterday a woman at the table next to us became distressed with dizziness and shaking.  The EMTs were called and our chef stood by until they arrived, put the BP cuff on her and wheeled her out to wait for the ambulance.  She's okay, just dehydrated.  But on reflection the whole scene was pretty funny.  No one looked up and everyone just kept on eating and talking like nothing was going on around them.  We did as well...whether we are all just numbed by the frequency of these emergencies or not wanting to embarrass the woman by staring, who knows but with my weird sense of humor, I now find it funny.

The weekend menus around here are questionable and yet predictable.  Saturday, not being much of a beef eater, I took one look at the slab of roast beef and the weak group of previously frozen veggies and just couldn't eat it.  He-Who-Sleeps-Alot noted it and I just said I didn't care for it, no big deal.  So the next day on the way to the Dining Room, He-Who showed me a note pad and said he was going to write down all the things I don't like to eat.  "So what are you going to do with the list?" I asked.  "I'm just going to keep track." he answered.  "Okay, so are you going to write down all the things I like?"  "Nope, just the ones you don't like."  So off we go.  Our menus always offer a soup or salad as the first course.  Our darling waitress gave me the "don't go for the soup" sign so I declined.  He-who ordered the soup, pulled out his pad and wrote down "no soup".  I ate my lunch and later back in our apartment found the note folded up on the floor, never mentioned again.  ???? Ya just never know.

Playing catch up here, my get away to Colorado was wonderful!  My niece and her wife pampered us with delicious, incredible dinners, two trips to the wonderful Brown Shoe Store in Ft. Collins and a dinner theatre.  Granddaughter came and stayed with He-Who and they both had a great time.  She even got him out on the dance floor at the Happy Hour.  My fabulous sister-in-law suggested that we put me in a wheel chair at the airports and we whizzed through security at Hobby leaving and in Denver, more difficult on the way home at Hobby but it was made better by our nephew and his significant picking us up with bouquets and taking us to Mother's Day lunch.

Then last week we were off to San Antonio to be part of our youngest granddaughter's Senior Prom weekend which was such fun.  She looked beautiful, her date, a handsome accomplished saxophonist.  AND we visited the office of the under-construction Watercrest at the Dominion independent living facility just minutes from our son's home and put down a deposit on a corner 2 bedroom, 2 bath apartment with a utility room with a washer and dryer and a wrap-around balcony with a view. And continuing care and a memory unit. Occupancy the end of September or October which is great!  I am terrified in a way about leaving family and friends in Houston after all these years but I think this is a wise decision...to go before we have a crisis and have to take what is available.  Change is coming, better get used to it.

Life at a snail's pace....

Oh dear....wrestling with high blood pressure and swollen ankles...enough distress to cancel a planned trip to San Antonio to look at a new retirement community there.  It won't be ready until August but I think it is going to be perfect!  Great floor plans and a WASHER and DRYER in a little utility room...Hallelujah, would that ever be nice!  Doc was encouraging me to go on but I'm glad I didn't!  The additional BP med knocked me for a loop!  I was in no shape to drive for sure.  Heart rate crazy and all I wanted to do was sleep.  No energy and I have to be well soon. Off the new med for now and much improved with very skinny ankles and 5# lighter. You think stress might be doing a number here?  DUH!

 I have a ticket to fly to Denver to visit my niece on next Wednesday with my SIL (our annual Mother's Day treat) so home we stayed this weekend.  I was going to leave hubby with our son's family in San Antonio while I was gone but our doc advised against it as it would be too much for hubby and disorienting.  But plans are in place for hubby to stay here with a combination of caregivers and family.  Our granddaughter is going to spend two nights and daughter will come in one day. I've labeled the remote  for the TV as it is confusing for He=Who and have glued a note with his favorite stations on it on the table under the TV.  Instructions to caregivers say leave the TV on MSNBC when they leave.  He doesn't wander (thank goodness) so he will be fine..Whew!  By damn I am going to be on that plane!!!

Last week He-Who finished his shower and came into the living room all dressed and ready to go to lunch.  The weather has been so warm here so he came in wearing the bottoms to his short pajamas.  Cute, huh, but he was happy to change.  A few days ago he came into the living room after eating his breakfast and greeted me with a warm Happy Birthday kiss...my birthday was weeks ago but hey, I thanked him and have learned to treasure these moments of sweetness.  He was quite proud of himself for remembering that I had a birthday and I am, too.