Friday, June 22, 2012

Alzheimer's Husband Travels by Himself

Hubby wanted to know again and again if I would take him to the airport and if I would pick him up. Repeatedly he wanted to be assured of this and repeatedly he noted how he would miss me. Of course I would miss him as well, but my family had arranged a cruise for me as respite time and DH was to visit his son and family out of state and meet his two new great grandsons (ticket thoughtfully paid for by his son). That son would drive several hours to an airport so that his father wouldn't have to transfer planes.

Yesterday hubby wanted to go with me on errands. The Alzheimer's loved one always wants to be with us.

"But the lawn isn't mowed," I reminded him. Now hubby will always try to arrange it to be with me, and has a tendency to put off mowing the lawn.

"I don't have any gas for the riding lawn mower," he objects.

I show him where there are other gas cans full of gas and I leave on my errands. He calls me on my cell to again say there is no gas so he can't mow. I tell him again where the gas cans are. He calls me on my cell to say I don't have to come home, because he found out there is plenty of gas. Sure enough when I get home the front yard is mowed and half of the back yard as well. The job that he has conveniently put off is 2/3 finished.

It was his turn to pray last night when we went to bed and he holds my hand tight. Thank you, LORD,  for this wonderful opportunity of our vacations. I often remind him of things to pray about, although he amazes me when he prays--how grateful he is and what he does remember.

Ready to fly today. Ziggy, our dog, is ready for his vacation also, only he thinks in his canine mind that he will go with us as he did when we camped on Memorial Day weekend. He is dropped off at the kennel.

We get to the airport ahead of time to arrange my walking him to the door of the plane. See here. Hubby and I have lunch at TGIF (not at all sure of the Weight Watcher points in a Cobb salad). We proceed through the security check points, me with my prearranged pass printed today easily because I had made that trip to the airport. I got body searched because of the wire on my bra, but somehow they didn't notice the sharp knife in my purse that I had gotten for free at Sams last week.

When hubby is ready to board, I give him a kiss and later text him (he may not know how to retreive the text). His cell is turned off. There is a picture of our dog, Ziggy, on his cell, which I think he will look at and then maybe retrieve the text.
It felt like I was a parent sending a child off to college. I knew the trip would be great and he could be with his family and meet two great grandchildren he has yet to meet. But I needed to pray more.

I went to the airport chapel and commited this week apart to the LORD. I know that the break for me is much needed, even though my husband doesn't understand respite time and we have only called it our vacations arranged by thoughtful family. LORD, help me not gain 10 pounds on my cruise. It is so hard to lose when you are older.

Just before posting this his son called to say that DH has safely arrived, minus his shaving cream which was confiscated. Thank you, LORD. Now it is time for me to finish packing for my cruise with my sister-in-law.

Here are links on traveling and dementia patients:





Saturday, June 16, 2012

The Pill Pusher and Other Routines

Tuppleware cup with pills now works
We were out late last night. We both forgot our pills last night because we were out to midnight after a wedding and came home tired and the PILL PUSHER (me) forgot to take the pills to the reception and forgot to have us take our pills when we came home.

Pill-taking has been trial and error. Sometimes hubby refuses to take pills if it isn't in the routine that works. He has often forgotten pills in the SUN-SAT pill container even though those are in plain sight. But routine does work with dementia patients.
 
Alzheimer's patients like routine, but not always variety. Hubby's meal routines work for us when I have to leave the house. For breakfast DH has coffee usually or Diet Lipton Green Tea, one Emerald Breakfast on the go! packet, unsweetened applesauce that I put in a little container (I keep several in the frig) and two "ice cubes" of coconut oil fudge I have written about on this blog. His pills come out of a Sun-Sat AM pill box that I put in a little Tuppleware cup on the plate.  Lunch will be on  plate in the frig when I am gone: a sandwich in a baggie, yogurt with blueberries added and crunchies, and two more coconut oil fudge "ice cubes", a lunch that he rarely  needs to warm up because most of the time it is just a sandwich.  I use this pill tupperware cup at dinner for his PM pills as well (just didn't work last night).

This morning I left the house at 6:30 AM for my 7 AM Weight Watcher meeting before assembling my husband's simple breakfast above, letting him sleep in. I thought I would be home in time for us to have breakfast together. Instead I called him to tell him how to put it together so I could go to breakfast after Weight Watchers with two ladies. On the phone I gave him one idea at a time: get the breakfast packet, etc. He was able to do this because this simple breakfast he has many days is part of his routine. He likes to feel he can do things.

He even called my cell this morning  to see how he could feed our dog. He remembered that he is supposed to ask me each morning if I have fed the dog and if The Pill Pusher has had her pills--then he checks these off on his clipboard schedule for the day. Routine is soooo important for Alzheimer's patients.

So in summary on routines:
  • Clipboard schedule with activities to check off. Schedule also has phone numbers on it. Husband requested schedule some time ago and it works for us because he knows he has dementia and needs reminders.
  • Tuppleware with pills on the breakfast and dinner plate so that Pill Pusher doesn't have to nag.
  • Keep items in the same place. Don't change where the cell phone gets plugged in for example!
But oh those cell phones and keys! I am the one that needs to have a routine to check on these things!

Sunday, June 10, 2012

Lovegiving Rather Than Caregiving


We all lose items from time to time.  Now when you don't have short-term memory you can't remember where you last used that item. I have left items places where I have taught and can trace that item and recover it at that school.

The latest item my husband has lost is his keys. Wednesday hubby was mad and wanted the keys right away. I said that I would get it after I worked Thursday which we did.

However Thursday morning he seemed uncharacteristically down. "I am losing it," he said. Several times he asked what day it was and several times I told him. We went after I worked to get him new keys. It cost over $70. We probably will find his other keys, but his sense of being in control is related to his having his keys and his maintaining a good frame of mind.

I love him and want him to be in good spirits. I am not merely a caregiver of my husband's possessions--his cell phone and his keys. I started thinking about those words caregiver and caregiving. Mark Shriver in the last post here is right. You are a lovegiver involved in lovegiving. If you were a caregiver only, you would say, "You have lost your keys twice now and I have decided that you don't need them." Sounds like a parent caregiver.

From Pinterest
If you are a lovegiver, you 

  • listen
  • speak one sentence at a time so what you are saying does not confuse the loved one with Alzheimer's
  • spend money such as getting new keys. I also got my husband four new ties several days ago that have the zipper on them so they are easier for him to put on.
  • answer without arguing. I read to never argue with an Alzheimer's loved one. He is right in his mind and his mind is often in a precarious position.
  • share
  • enjoy without complaint. DH has a great sense of humor and I do enjoy that about him.
  • trust without wavering. It is important that he trusts me also.
  • forgive without punishing. To punish would be to penny pinch and say no to a new set of keys.
  • promise without forgetting. Someone in the house has to remember.  I have changed the terms at the top of this blog from caring and caregiver to loving and lovegiver.
Your lovegiving is for others as well. Without feeling sorry for yourself thinking I have enough on my plate because my loved one has Alzheimer's, you find opportunities to give to others and God gets the glory when you do this.

So instead of new responsibilities as a caregiver, I really give love. I have those new responsibilities as my husband's helpmeet, and I love him and can show it. This is a huge paradign shift if you think about it. Dolores and Karen also picked up on this notion with their comments on Shriver's book review below. Maybe we are on to something here, gals.

Monday, June 4, 2012

Review of Mark Shriver's Book on His Father Sarg Shriver



Eulogies often happen before we can fully appreciate what we have lost.  Mark Shriver's eulogy pretty much sums up a lot about his dad, Sarg. It can be read in last month's May 27 Parade Magazine Article.

Nonetheless Mark needed to rediscover his father and has done an outstanding job of fleshing out a wonderful man in the almost year and a half since Sargent Shriver's death due to Alzheimer's. An advanced reader's copy of this book was mailed to me by the publisher, Henry Holt and Company with permission to quote from the manuscript. Officially the book is released to the public tomorrow June 5th.

Note that sister Marie Shriver also produced The Alzheimer's Project, a four part HBO video project and a film for which she earned two Emmy Awards and an Academy of Television Arts and Sciences award. Maria's book for children is also reviewed here. Mark Shriver also deserves awards for this book because in his heart-felt reflections as he discovers his father's "insistent joy, powerful faith, generous spirit, and hopeful view of life." (p. 7) What outstanding tributes to their father!

Mark's mother, Eunice Kennedy Shriver, founded the Special Olympics and Sarg Shriver the Peace Corps. While there is much Kennedy trivia, mystique and accomplishments that can be noted in the book, and Mark does say in the Acknowledgments that his publishing-savvy cousin Caroline Kennedy "taught him the ropes" for this book, I want to zero in on how faith here is passed from generation to generation, and how Sargent Shriver dealt with his own Alzheimer's.

Mark writes that Sarg went to Mass every day, even when he was in other countries. Furthermore, Sarg's faith wasn't just a ritualistic habit. Mark writes:
Dad was a radical, a hell-raiser who based his revolutionary public service on very orthodox instruction manuals: the Scriptures, his faith's creeds and prayers, and the life of Jesus Christ. . . . Dad lived out applied religion. He applied his faith's ethics every day to everything he did. His paradox--his radical orthodoxy--allowed him to conform to the requirements of a life in public service. (p. 128)
Despite admitting his own insecurities and early anger, Mark comes to terms with faith, hope and love reflecting on his father's death and faith.
I liked to think about faith, hope and love at church and talk about these ideas with my kids. But apart from a few minor struggles, I never needed them as if life depended on them. . . . It is ironic that so often the first time we have to use them for real--our parents' principles and examples and tools--comes when they themselves age, suffer, and die. My capacity for faith, hope, and love wasn't truly battle tested like his--until the day we learned what he would die from, and the ways in which he was going to suffer in the years leading up to his death. (p. 130)
Sarg was diagnosed with Alzheimer's in early 2000 and was put on the drug Aricept. Eventually Mark, the fourth of five siblings, was in charge. He handled finances, medical care and "each small step in his decline became another devastation for me" (p. 5). Early on in the disease he became angry with his father's obsession with turning on every light in the house. I can relate to obsessions (different ones) that my husband has. Yet Mark realized:
There could still be periods of happiness especially if I accepted Dad in the moment and didn't compare him to his old self or worry about the future. (p. 169)
Yesterday we were late for church. We were stopped by a train and Mark's words came to me. It didn't matter when the train would pass, when the end of Alzheimer's would come, but what mattered was now, the moment. My worship playlist on my iPod came through the speaker: Great is Thy faithfulness, O God my Father, morning by morning new mercies I see. I worshipped with those words.  The moment of the endless train in front of me became transformed.

In 2003 Mark's brother Timothy approached his father about resigning from his job as Chairman of the Board for the Special Olympics. Sarg graciously resigned and continued showing his same values and care for others.
Even as he struggled with his memory and his mind faltered, he was, at his core, the same human being, breaking his mirror so as not to focus on himself, hopeful about humanity and the years ahead despite knowing the trials that lay ahead for him personally, and loving everyone, especially those society had shunned the most. A constant other-centeredness. He never lost it. (p. 174)
Sarg loved his wife in over 50 years. He once said to Mark, "Nowadays, everyone wants to change what God has given them  Look at those wrinkles on your mother's face. Have you ever seen a more beautiful woman in your life?" I cherish also the love that is given to me by my husband. Loving feelings of the Alzheimer's loved one continues even if memories don't.

Perhaps the most interesting dialogue between son and father came when Mark said to his father , "You are losing your mind. You know that. How does that make you feel? How are you doing with that?" Sarg replied:
I'm doing the best I can with what God has given me. (p. 190)
Mark was totally in awe of how his father let God be in control and asked for God's guidance every day of his life. This is where his father's joy came from.
Dad didn't harbor anger toward anyone, including those who may well have shortchanged his career, because he realized that he wasn't in control and neither were they. His faith was real and personal, and it freed him from anger and sadness and filled him with hope and love.(p. 191)
After Eunice died and the big house had to be sold, the term "caregiver" came into Mark's vocabulary. He discovered instead he had to be a "love giver". Lovegiver is now my new term. There really is a difference. I will reflect more on that difference in another post on this blog.

Thank you, Mark Shriver, for bearing your soul and all you have learned in the end. You don't have to be in control, a Kennedy, a Shriver, a politician, but in your book about your father, you have discovered your own new happiness.

Thursday, May 31, 2012

Saga Twenty-Five


Jake and Sally's Camper at the left
Friday May 25 we headed south for camping and a wonderful four nights and five days of camping with our good friends Sally and Jake. With the exception of rain on Monday, the weather was perfect. No mosquitoes.


Friday night provided drama. Hubby, although he doesn't drive anymore, usually backs up our popup camper and so it was that he was at the wheel. He was agitated and it was sundown time. In a mood that he doesn't remember he told me we are going home. He didn't want to stay.


"Get in the car," he orders me.


"No," I reply. "It is too far home and we are staying here."


He made me feel like a rebellious wife, not obeying her husband. I recognized that this was a sundowning episode that he has had on occasions. I took our dog out of the car, fearing that he would actually decide to go home. Somehow I mustered enough courage to tell him that if he left the campgrounds in our Expedition I would call the sheriff, have him stopped and "Baker Acted". I have never ever had to talk like this to my husband whom I love dearly, but "for better and for worse" includes "for worse". I coaxed him out of the car and he sat down. Later that first evening DH forgets about the incident and asks me if I am mad at him. “No,” I say, and “I love you.” The extended Memorial Day weekend would proceed without further meltdowns.

Mirror and Place for Sunscreen, Etc.
Meanwhile I drove the car and popup camper around the sparsely occupied campground so I could drive forward to our spot. Jake helped me set up the popup. Setup of this popup is in Jake's long-term memory because he used to own it. In contrast to DH, Jake is a bundle of energy and you have to watch what he does because it is not always rational. He wanted to take everything out of our popup so he could clean it.


"No, Jake," and he listened and we proceeded to do just enough to get set up while hubby looked on. The picture at the left shows just one drawer that Jake thought he had to empty. Remarkably free of bugs (I found only one dead spider), it didn't need to be cleaned out of pots and pans and items that this spacious 6 bed popup was able to store. Over a year ago I had placed labels on drawers so my husband could find things. This also shows his cell phone charger plugged in at the bottom left. Routines and clues are so important for Alzheimer's patients. Hubby would use that cell phone during our camping when he had forgotten where I was. I got calls in the bathroom and at the club house.




With camp set up, and Ziggy in a travel cage in Jake and Sally’s more secure with better air-conditioning camper, we set off for dinner at Sony’s. We have a lovely dinner and scope out the town of Clewiston to plan our weekend. We will have Sunday brunch at the Clewiston Inn and then go to the 11 am church nearby. Memorial Day we will schedule an airboat ride. We return to bail out Ziggy and bring him to our popup. This first night of four I do not sleep well. The senior citizen lady that I am I had to get up in the middle of the night four times to use the bathroom. This involves walking about a block to the clean bathhouse. It disturbed both hubby and dog Ziggy. The next three nights would proceed more smoothly as hubby and Ziggy were more used to this routine of mine.

Saturday, May 26 we again put Ziggy in his cage in our friends camper and we head off the Clewiston., such a small town, but we manage to find a Goodwill. DH finds his usual seat in the store and the three of us look around. Sally finds a book by Max Lucado to read; I had brought my advanced copy book by Mark Shriver  to read, A Good Man, which I will review on this blog in June to write about Sargent Shriver's Alzheimer's. Back at the campsite Sally and I make BLT sandwiches that we serve picnic style at the club house porch. In the club house where Ziggy also hangs out we have devotions from Dana’s Galatians book. Jake and Sally go swimming. DH watches TV in the club house and I read, get on line on my small notebook computer and go on a walk finding a family of ducks (pictured).  For dinner I assemble the salad from the fixings I cut up at 4 am Friday morning before we left and Sally adds chicken she has grilled. We eat in their camper and after dinner, three of us play several games of UNO with Jake not joining us. I was very pleased that DH joined the UNO game. As Shriver's doctor told his daughter, when you have seen one case of Alzheimer's, you have seen one case of Alzheimer's. Lots of contrasts between DH and Jake.

Sunday as planned we have brunch at Clewiston Inn. Sally did something wonderful I thought since I am spending more time in prayer this year; she told waitress Elena that we pray at our meals and "How we could pray for her?" We prayed that she would make it through the day. Another time she asked waitress for a prayer request and we prayed that she could get her own place to live. Today at the grocery store I looked at the Choice Books display and purchased The Power of Praying by Stormie Omartian. The young man who bagged my groceries said that he bet that was a good book. I had him carry out the groceries so I would be able to pray for him that the LORD would give him another job or promotion because he is getting married in September. Thanks Sally, for this really good idea.  

The eleven AM church service was wonderful and we were warmly greeted. My husband stood when they asked all service men to stand. For the offertory the pianist played a medley of "Spirit of the Living God" and "My Country 'Tis of Thee. The wonderful pastor, short in stature, but mighty in faith delivered an inspiring message, “You Won’t Even Know When I am Gone”, for Pentecost Sunday. Christ told his followers that he needed to go away so that the Holy Spirit who would guide them into all truth will come. Text was: Acts 2:1-21 and John 15:26, 27; 16:4b-15. As is my practice, I took sermon notes on my notebook computer.


Trust the Spirit, look to the Scriptures,
and do what the Spirit says to do.

I needed that message--direction for this journey we are on. When you care for an Alzheimer's loved one, you need a simple life--not a popup camper that has holes to fix. That afternoon we discuss the popup. So much work to set up and DH and I decide to get rid of it. He will not remember that decision on Monday, but at least Sally is my witness that this decision was made--we had even prayed together about where it would go. Jake with his Alzheimer's will not always be able to help us, and hubby wasn't comfortable with camping with his Friday night meltdown.

Lock Going Out to the Lake
Monday, Memorial Day, we go on an airboat ride on Lake Okeechobee in the morning. We have lunch at the Clewiston Inn and it starts to pour rain. Back at the campsite we assess the damage to the popup. Not bad and husband seems to have forgotten that we have decided to get rid of it. Sally and I both have naps.

By Monday Jake checks the inside and turns on the refrigerator which we didn't think worked because the Jayco dealer said it couldn't be fixed. I was using that small refrigerator to store cans. At night we eat out at the Tiki Bar—hubby ordering his coconut shrimp and I ordering a taco salad minus the shell, olives and sour cream--idea from my Weight Watcher leader. Both Sally and I are doing Weight Watchers, although not perfectly with camping.

When we return to the campsite, we have devotions from Dana’s Galatians book.  Everyone turns in except I get on my notebook computer in the popup and check the Internet, learning some new prayer requests. We will leave in the morning. 

Tuesday morning. Decision time. No electricity when we are ready to leave. I discover cold cans in the refrigerator—the camper refrigerator works after all! However, there had been too much plugged in with my notebook computer, our cell phones and that refrigerator. The air conditioner doesn’t work. We needed fuses, perhaps, or the source for electricity at the campground wasn't working. But time to go and not solve the fuses.

With taking the popup down, I wondered if we could just drive it somewhere and not take it home. I feel like this would be a step of faith, and hadn't I learned that with the pastor's Pentecost sermon? I call my neighbor's cell; he used to work at a RV dealer that would be on the way home. I leave a message, but don't hear back from him. I empty all the drawers except the miscellaneous drawer where I have lights and fuses. I leave notes in that drawer and safety pins that I used to pin up curtains. I put what I can into our Expedition and Sally and Jake pick up other items to transport back to Plant City.

New Adventures for This Popup Camper
Then I remember that a wonderful family of five in my church might want our popup--the wife had once said to me that if we ever wanted to get rid of it, they might be interested. I talk to the couple and I tell them all about it. This family is very resourceful and I know they can deal with the popup camper's quirks. The family said yes and  two delightful daughters helped settle it on their property which was on our way home to Plant City. 
We arrive home safely driving through rain without the popup. Exhausted, nonetheless I substitute teach on Wednesday and hubby actually mows the front yard without my pressuring him.
Wednesday night we go over to Sally and Jake's to get our stuff and we go to dinner at Weight Watcher friendly Applebee's and reminisce about the weekend, with Jake and DH remembering some of the weekend. Both did remember the airboat ride. Hubby pretends sometimes to remember recent events while Jake often looks mystified. Alzheimer's is different for everyone, but as Jake's T-shirt says, old guys rule. 
Without Jake, we couldn't have camped.

Sally and I love our husbands who do need us to explain things to them now. We appreciate what they can do--Jake's willingness to always help, and DH's humor and easy-going attitude--most times.


Thursday, May 24, 2012

Books on What to Tell Children About Alzheimer's

How can you explain the changes Alzheimer's brings to a grandparent to children? Two children's books help.

In The Memory Box, by Mary Bahr, published in 1992, Zach tells the story of visiting his grandparents for three weeks on summer break. He looks forward to fishing with Gramps and eating Gram's cooking.

One night early in the visit Gramps tells about a memory box that his father, Great Gramps, had given Gramps. The idea is that an old person and a young person fill the box together so that "no matter what happens to the old person, the memories are saved forever." The three characters decide to make a memory box for Zach and Gramps. Pictures, a recipe and written stories are put in the blox. More will be added.

One day, on a walk Zach notices changes with Gramps. "That day it seemed like his body walked with me, but his thoughts strolled somewhere else." Another day Gramps wanders off without shoes. When found, Grams explains, "The mind doesn't go all at once, or all the time, but it never comes back the same way."

At the end of the visit Zach was sent home with the memory box to add things to it for the next summer when he would come back.

Maria Shriver has written What's Happening to Grandpa? published in 2004. The book is about a girl named Kate who was taught "always, always to stick up for your family." Kate's family always visited the grandparents on Sundays, and one Sunday Kate noticed that Grandpa kept repeating the same storeis and didn't remember what he had done earlier in the day. Kate notices when her Grandpa gets angry because he can't find something and he yells at Grandma. Kate asks her mother about this behavior and finds out that he has Alzheimer's. Mom tells her he will begin to forget more and more and says
That's why it's so important to cherish who he is today.
One Sunday Kate chooses to be with her Grandpa instead of with her friends. She explains to them: "Alzheimer's is when you lose your memory. You get confused and ask the same things over and over. It starts slow and gets worse with time." That Sunday Kate works with her Grandfather to make an album of pictures. She writes down what he tells her.  

_________________________________

Character Shawn, a disabled young person in Stuck in Neutal by Terry Truman, writes:
Memory is all we have, for ourselves and for the people we love. The memories of us, once we die, are all that's left of us.
For the believer, there is more; life in heaven awaits where there will be no more Alzheimer's. Meanwhile there are grandchildren  who need simple answers that these two pictured books provide. They can cherish the memories of grandparents while there is opportunity.

Monday, May 21, 2012

Saga Twenty-Four

I had to attend a workshop in Orlando, Florida. Hubby wanted to go with me and was willing to sit in a lounge area during the 9 to 4 workshop. The first hour he contentedly sat there--no TV--didn't want a paper. He still reads hymns at church when we sing, but doesn't like to read much else except his daily schedule. This has got to be annoying for him, I thought.

I asked one workshop participant who sat next to me if she would mind moving to the only other vacant seat in the room. The leaders agreed to let my husband into the workshop to sit beside me. This worked so well.

After the workshop, he said to me, "Carol, you work so hard. What fun thing do you want to do here in Orlando?"

"Outlet malls," I quickly replied.

"That it is!" was his reply.

At a large outlet mall with lots of customers, lots of purchases, we found a cool table with an umbrella for him to sit at while I went into Victory Secrets to buy gifts for two bridal showers. Success--I got the gifts! While I was gone, a gentleman approached my husband and asked if he had any money. Hubby said "yes" and gave him the $9 he had in his wallet. He could tell me about it later because it was an unusual happening for him. The next day at church he could also remember and talk about this event. I love the generous LORD in my hubby. Hubby was generous with a stranger and also generous with letting me have down time to go shopping.

We went on to find a place to eat supper on International Drive, so famous for all kinds of entertainment, shops and eating places. In the midst of traffic I turned left into a strip mall and found another umbrella place for hubby. Beautiful weather. He is happy to sit anywhere when I am nearby and if he needs me he calls me on my cell. He just doesn't have energy to walk around. I headed to a gift shop and found another gift for someone. He calls when I am paying for this T-shirt and then I meet him at the outside table. A waiter with an "I love Jesus" cap has given him a glass of cold water and we are invited in to eat at OWhirlyDome, 6464 International Drive.

It turned out to be a place that had been open only two days. We eat so boring usually, especially because I am on Weight Watchers, but decided on fancy with coconut! Coconut oil is on hubby's daily menu. We ordered a large coconut shrimp appetizer and a citrus salad--both so delicious--and shared both. We complimented the management that we couldn't remember when we had recently enjoyed our meal so much and said our waitress was so lovely. Hubby also enjoyed his Johnny Black Scotch and water! With not a lot of customers yet, I chatted with the waitress and performed two of my raps for her. Danielle said she was going to make that coconut fudge that hubby gets every day usually.

We drove home and I worked on my seminary paper on stress management--prayer and the caregiver. That 20 page paper is essentially done now, although the topic is huge. Have seen wonderful answers to prayer recently also.

Yes. I always have a lot going on and hubby just wants to be with me. Sigh!

Today we will go to the monthly senior group at Sally and Jake's church, where we are becoming regulars. I have been asked to do the devotional. I am talking on "leaving a prayer legacy."

Friday, May 18, 2012

Saga Twenty-Three

It's been several months since I have posted a saga. Hubby remains in stage one of Alzherimer's, thank the LORD!

Monday I had my husband angry with me (this is rare but part of the disease) because I didn't come home when the schedule on his clipboard said I should come home. I called to tell him why I would be delayed, but he didn't remember why--I was checking on his flight arrangements and even though I called to tell him about this, he became angry and had forgotten with the next phone call. In fact, as I called to reassure him when I would be home, he wouldn't answer the home phone or his cell phone as I fought my way through traffic to get home. Emergengies happen and what is an emergency to the patient, may not be an emergency to the caregiver who has more problem-solving skills. When I got home, I deverted his attention by our going out to dinner. Tuesday he had forgotten about my airport trip.

I wrote earlier about the emergency of the missing cell phone and the missing watch that upset my husband. Calmly, on my part,  we worked through that. Sunday a tech-savvy-20-something friend at church put pictures on my husband's new cell phone so he can remember names of people at church.

My emergency happened while cutting up tomatoes with my great Chef's Envy kitchen tool for dicing, shredding and chopping. I had been neglecting the safety handle. Sure enough I cut my thumb while slicing tomatoes and had difficulty stopping the bleeding. Hubby, who still has a driver's license he doesn't use, was going to drive me to urgent care. However, with pressure and ice I was able to stop that bleeding and with coaching he was able to finish dinner preparations.

The next emergency happened when we came home last Sunday after church.  Our air conditioning was broken. The dog was panting in the 89  degree heat in the house and hubby expected that I call someone. His computer died and I couldn't easily find the phone number of the man who installed this air conditioner several years ago. DH was beside himself. Situations need to be solved immediately for him.  I just thought we could go to our back yard deck and solve it on Monday, but no. It had to be solved immediately so hubby could watch his TV. I put ceiling fans on and opened windows.  A call in to our friends Sally and Jake and we had someone coming Sunday night. The dog and I headed to the back deck. Before I knew it, hubby was driving our car out of the garage so the repair man could get up in the attic to fix our air conditioning.

But yesterday we had a lovely outing, sponsored by Bok Tower and the Alzheimer's Association. I drove five of us including our friends Sally and Jake and a new lady friend Caroline (who daily visits her husband in a nursing home) in our gas guzzler. They helped pay for the gas. I saw other people whom I have met in care groups or workshops there and we caught up on their news.

Bok Tower and Sanctuary is approximately 50 acres founded in the 1920s by Ladies Home Journal editor Edward William Bok and designed and executed by Fredrick Olmsted. The purpose stated was to create a "retreat of repose and a refuge for birds" along with to showcase plants. Twelve paid gardeners and many volunteers including our tour guide work there. Although it was in the hurricanes of 2004, in several months in was restored and the tower was fine. Music chimes from that tower. At one point on the tour we were given a 20 minute session on tai chi, yoga, and pilates. Before lunch Sally and I had a massage, but our husbands didn't want  a massage and others assured them where we were. Both husbands had forgotten how we had gotten there--our car. Sally and I both bought plants and I planted ours when we got home. Bok Tower is giving caregivers a yearly pass to this retreat and others sponsors had gifts including lunch by a elder law firm. Sally won a gift basket and I won a $25 Walmart gift certificate. This morning hubby had to be reminded of our Bok trip, but did fondly recall it.

Sign Welcomes Caregivers

Jake and DH on the Tour

Wednesday, May 9, 2012

Ask Alex: The Automated Answer Lady at United

Talking to United Airlines is like talking to a hubby with dementia. You have to repeat things often. As a couple we minimize this by having a clipboard list of the day's events, but when we are out and about hubby asks repeatedly where we are going. I am very patient. It is not his fault.

However, when I brought the following United Airlines dialogue on the Internet to my Alzheimer's Association support group yesterday, we were all in stitches. The dialogue has been edited to take the United Airlines links out and I have put some of my dialogue with the pictured lady Alex in red.
Alex: Hi, I'm Alex, your united.com guide. I've been designed to make your time on our website as fast and efficient as possible. Just type in a question, keyword or phrase below and I'll take you to the information you're looking for.

You Asked: My husband has stage one Alzheimer . .

Alex: I'm not sure I understand, please try rewording your question.

You Asked: Can I walk my husband to the door of the plane because he has beginning dementia?

Alex: I'm not sure I understand, please try rewording your question.

You Asked: Where do I call to get my question answered?

Alex: I can answer many questions about reservations, but you can find additional contact information when you select the appropriate topic on this Web page. View Page

Here's More:

Contact Reservations

Contact United Customer Care

Contact MileagePlus by mail or phone

Baggage Resolution Service Center

You Asked: Contact United Customer Care

Alex: If you would like to provide feedback on a recent travel experience, use the form on this Web page. If you would like to contact United regarding future flight reservations, select the Contact Us link below. View Page

Here's More:

Contact us

You Asked: Contact United Customer Care

Alex: If you would like to provide feedback on a recent travel experience, use the form on this Web page. If you would like to contact United regarding future flight reservations, select the Contact Us link below. View Page

Here's More:

Contact us

You Asked: This has not been helpful, Alex

Alex: I'm sorry that I'm having trouble answering your questions.

Here's More:

Contact us

You Asked: I need to walk my husband to the plane door.

Alex: I'm not sure I understand, please try rewording your question.

You Asked: After the security check, I am not sure he actually will get on the plane. Please provide information on an assistant.

Alex: The Transportation Security Administration, U.S. Customs and Border Protection and the Department of Homeland Security work together to ensure the safety of customers, civilians and the United States as a whole. To view regulations and procedures specific to these agencies, please follow the links below.

Here's More:

Transportation Security Administration

U.S. Customs and Border Protection

Department of Homeland Security

You Asked: This is not my question. I need medical information.

Alex: I'm not sure how to answer that. I understand simple questions best, can you try asking that in a different way?

You Asked: Help! My husband might get lost flying by himself.

Alex: I am not positive that I understand what you are asking, please try rewording your question.

You Asked: Whom can I call?

Alex: I can answer many questions about reservations, but you can find additional contact information when you select the appropriate topic on this Web page.

You Asked: phone number needed

Alex: I can answer many questions about reservations, but you can find additional contact information when you select the appropriate topic on this Web page. View Page

You Asked: I have been trying to do that. My husband has dementia and I want to walk him beyond the security gate to the point where he actually boards the plane.

Alex: There's more than one answer to your question. Please select the topic below that interests you.

Here's More:

Boarding procedures

Security information

You Asked: Boarding procedures

Alex: Generally, uniformed military personnel, customers traveling in a premium cabin and Premier Access customers are invited to board the aircraft along with customers with disabilities before general boarding. Once pre-boarding is complete, United Economy customers are invited by boarding group. Boarding groups are assigned based on your row. Customers seated in the back of the aircraft board earlier than those seated toward the front of the aircraft. Once assigned, your boarding group will appear on your boarding pass.

You Asked: Boarding procedures

Alex: Generally, uniformed military personnel, customers traveling in a premium cabin and Premier Access customers are invited to board the aircraft along with customers with disabilities before general boarding. Once pre-boarding is complete, United Economy customers are invited by boarding group. Boarding groups are assigned based on your row. Customers seated in the back of the aircraft board earlier than those seated toward the front of the aircraft. Once assigned, your boarding group will appear on your boarding pass.

Here's More:

unitedhub.com boarding zones

Boarding passes

Premier Access

Travel documentation requirements

When to arrive at the airport

You Asked: Security information

Alex: The Transportation Security Administration, U.S. Customs and Border Protection and the Department of Homeland Security work together to ensure the safety of customers, civilians and the United States as a whole. To view regulations and procedures specific to these agencies, please follow the links below.

Here's More:

Transportation Security Administration

U.S. Customs and Border Protection

Department of Homeland Security

You Asked: Boarding passes

Alex: We have several options available for customers to get their boarding passes during the check-in process. You can go paperless with our Mobile Boarding Pass option, print your boarding pass from your personal computer, have it faxed to you or even print them at an airport kiosk. If you are within 24 hours of your departure time and are ready to print your boarding pass, select the Online Check-In link below.

You Asked: Goodbye


Alex: Goodbye.

Then I called the main airport, pressed zero as my option and found out that the way most airlines work is that we caregivers need to go to the actual desk at least two hours ahead of time and explain this to someone. I am going wayyyyyy ahead of time--days before--to talk to someone at United in person.

Tuesday, May 8, 2012

Supplements That May Help

Regularly my husband gets all the nutrition we can afford. The Alzheimer's Reading Room (http://www.alzheimersreadingroom./ has many posts that give insight and here is one with a chart I saved from their research.
What? No coconut oil? I know it works. It is interesting that Dr. Mary Newport's video on coconut oil is the most popular post ever viewed on Plant City Lady and Friends--top of that list. I do not think that my husband would still be in stage one and so happy if it weren't for his coconut oil. Dr. Newport also told me by e-mail to not neglect his Alzheimer's medicines because of the coconut oil, and so twice a day hubby gets Namenda and Exelon pills.

My husband prefers Lipton Diet Green Tea. Notice that green tea is high on that list. So is Omega 3 oil which according to an article by Megan Brooks  may protect against Alzheimer's. I got some that is like candy to give my husband from Winn Dixie the other day. He does take fish oil tablets, but does not like salmon as I do and try to eat whenever I can.

Fran Lowry writes that berries help cognitive decline in this article. Daily my husband has been getting blueberries with his 4 ounces of Activia yogurt. I get the 24 oz container of Activia and make six portions that include those blueberries. At times I substitute strawberries for the blueberries. Yesterday he ate two of those yogurt/blueberry mixtures from the frig. Last night I served my husband strawberry shortcake, instead of his usual ice cream.
There is a lot to say for super foods. Recently I heard that cooked spinach, tumeric, tomatoes, almonds and dark chocolate are super foods. Now spinach is a hard one to sell on my husband, but I'm going to try to put it into dishes. He gets tumeric in supplements from Vitacost. Tomatoes are easy--salad. I found some almonds with cinnamon that are good snacks for him. When I can I will make his daily coconut fudge with dark chocolate chips--maybe next time I will put almonds in his fudge.

When our loved ones with Alzheimer's get the best nutrition possible, surely this helps their overall health. When they get an infection, or break a bone, I have read, their disease progresses quickly. And, whatever I do for him, also helps his caregiver/spouse--me.