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.