Friday, December 30, 2011

Saga Twenty-One

We spend Christmas Eve at Sally and Jake's church (since we don't have a Christmas eve service) and then went out to Dennys' with Sally and Jake for some Red Velvet Puppies/pie and decaf. My husband didn't remember trying on the great shirt I got him several months ago, and so it was a surprise gift.

Christmas morning we went to our church's regular worship. Many of the church family had their lunch at church and stayed there all day.  We went to my husband's daughter's home at 2 PM. There was another family member with dementia there and I spent time with him as if he didn't have dementia. So important.

Emotional eating when your husband has Alzheimer's. Dolores has lost weight and I am now dieting and losing. You can get to all kinds of programs for weight loss on the Internet. I chose Weight Watchers where I am a Life-Time member, not having to pay or attend all meetings. Weight Watchers has a great new program for 2012 called Point Plus 2012 and has on online program, excellent for caregivers who can't get out to a meeting. My meeting is 7 AM Saturday mornings--a better time for my husband to have me gone than an evening. Now this has meant for me what when my husband wants ice cream, as he often does, I don't have any. I think of my doctor's words to me,

"Carol, if you don't lose some weight and exercise,
you won't be able to be your husband's caregiver.
Forget the ice cream."

All the motivation I needed.  Plus people always ask us caregivers, "What are you doing for yourselves?" I am attending a Weight Watcher's meeting, and UGH, taking classes on counseling.

When people ask us what they can do for us caregivers, increasingly we need to say,  "Can you help me by scheduling time with my husband?" so that I can do something for myself. However, this is not needed yet as I can leave him at home with our devoted dog and he can call me on his cell. There will come a time when this won't work.

Sally really needs this time away from Jake, however. Recently he kept criticizing her driving and she told him it wasn't necessary and please stop. Well, Jake said I am getting out of the car then. He did and she saw where he went. She parked the car and then caught up with him and told him we need to go into Best Buy. That worked. I gave her this idea, to keep talking while she drives with him in the car and don't let him get a word in. Say things like, I see that car and I am preparing to stop. So far she  this tactic is helping his obsession about her driving and his not being able to drive. You just gotta deal with the husband's obsessions, one and a time.

When I have the time, I read a lot of Christian blogs and take especial note of counseling blogs since I am working on a seminary degree in counseling. These blogs aren't talking to caregivers, who one day may not even be able to attend a worship service. I am starting to be more vocal when I comment on those blogs that our churches need to minister to caregivers and those who have dementia. When that happens for me, fortunately, my church has Skype and I can listen from home. The blog that comes the closest to ministering to caregivers is Practical Shepherding.  This blog has categories for ministry to widows for example. I mentioned this need on another blog and got this response:
Carol, That is a huge area of counseling caregivers for those who are aging and experiencing physical and mental difficulties. Plus, counseling the aging...retirement, adjustment, loneliness, purpose, etc. Bob
Please, bloggers, pray for Sally and Jake. Also for Dolores who is facing putting her husband in a facility--heart wretching for this lovely lady, who is usually so positive. And have a Happy New Year. We are again spending an early New Year's Eve with Sally and Jake at our house, playing games, if it will work, with our husbands. I am serving a salad with chicken, but others can also have bread and ice cream. For the Southern New Years Eve with coconut oil go to this earlier site at the right.

Saturday, December 24, 2011

50 Lessons from Old People

To celebrate growing older, Regina Brett (now over 90)  once wrote the 45 lessons below that life taught her. She also added friends are the family that you choose. Some of those lessons are too late for me now. However at age 67 I am adding # 46-50, just for good measure.
1. Life isn't fair, but it's still good.
2. When in doubt, just take the next small step.
3. Life is too short to waste time hating anyone. Change the way you think.
4. Your job won't take care of you when you are sick. Your friends and family will. Stay in touch.
5. Pay off your credit cards every month.
6. You don't have to win every argument. Agree to disagree.
7. Cry with someone. It's more healing than crying alone.
8. Release your children when they become adults; its their life now.
9. Save for retirement starting with your first pay check.
10. When it comes to chocolate, resistance is futile.
11. Make peace with your past so it won't mess up the present.
12. It's OK to let your children see you cry.
13. Don't compare your life to others. You have no idea what their journey is all about.
14. If a relationship has to be a secret, you shouldn't be in it.
15. Everything can change in the blink of an eye.
16. Take a deep breath. It calms the mind.
17. Get rid of anything that isn't useful, beautiful or joyful.
18. Whatever doesn't kill you really does make you stronger.
19. It's never too late to have a happy childhood. But the second one is up to you and no one else.
20. When it comes to going after what you love in life, don't take no for an answer.
21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.
22. Just because you believe you are right, doesn't mean you are. Keep an open mind.
23. Be eccentric now. Don't wait for old age to wear purple.
24. The most important sex organ is the brain.
25. No one is in charge of your happiness but you.
26. Frame every so-called disaster with these words "In five years, will this matter?"
27. Always choose life.
28. Forgive everyone everything.
29. What other people think of you is none of your business.
30. Time heals almost everything. Give time time.
31. However good or bad a situation is, it will change.
32. Don't take yourself so seriously. No one else does.
33. Believe in miracles.
34. Your job is to love your children, not choose who they should love.
35. Don't audit life. Show up and make the most of it now.
36. Growing old beats the alternative--dying young.
37. Your children get only one childhood.
38. All that truly matters in the end is that you loved.
39. Get outside every day. Miracles are waiting everywhere.
40. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.
41. Envy is a waste of time. You already have all you need.
42. The best is yet to come.
43. No matter how you feel, get up, dress up and show up.
44. Yield..
45. Life isn't tied with a bow, but it's still a gift.


46. This life is not all. We have eternity and need to put that in perspective. (like # 26 and #42)
47. Coconut oil is good for a lot that ails ya.
48. Stop kvetching. Rejoice.
49. Meditate on Scripture and good books and pray about every little thing.
50. Enjoy your holiday for what it is. It doesn't have to be perfect.

Wednesday, December 14, 2011

Gifts for Caregivers and Those With Alzheimer's

At one time I was a widow and now I am a caregiver. I would rather be a caregiver than a widow, let me tell you. As someone said in our Alzheimer's Association support group yesterday, I am in my marriage for better, for worse, for richer, for poorer, in sickness and in health until death us do part. When I was a widow, however, someone did say to me, Carol, we want to help, but you will have to tell us how. The pastor sent people to the house to fix things then and I did ask for specific help. When you are a caregiver of a husband who has Alzheimer's, you are grieving the loss of skills and abilities that your husband once had. You are both married and a widow in a sense.

The gifts that I appreciate now are:
  • Help with the computer. Thanks, Dave, for always fixing our computers--yes even my husband's so he can see his Facebook photos and I can use the biblical resources on his computer. Thanks for helping me get my Nook hooked up on my computer.
  • The Lutheran youth group (not even my church) who will come here to weed.
  • My neighbors who notice and mow the yard.
  • Bob who put up our Christmas tree.
  • People who pray. Revelation 5 says that their prayers before God are like incense in a gold bowl.
  • People who e-mail or call and ask what can I do?
  • People who post on this blog.
A child's book, Giving, by  Shirley Perich, out of print I think, has a boy who receives $10 from his aunt. He says it will be fun to go shopping when it's all about me. Then his mother in the mall asks him, "How about shopping for Grandma or your best friend instead?" He buys candy for his grandparents--their favorite. He goes home and helps his dad shovel the snow and his mom cook and clean. From Giving:

My day started out boring
But ended up being fun.
Now I'm all tired out
From the things that I've done.
I know what I do
Shows my family I care
It's a pretty good feeling
To give and to share.

I am a guest blogger on another blog--that of Joe whose book I have reviewed here. I just posted (Dec. 14) quotes from Richard Taylor's book,  Alzheimer's from the Inside Out on his blog click here . One quote I will also share here:
I want to encourage, advocate, promote, and persuade you to think about being a "Best Friend" to the loved one in your life who has Alzheimer's disease. p. 241
You can visit
or call and talk with
your friend
who has Alzheimer's.
Tell them your name
so they don't have to ask. 
Post on Joe's blog, also.  

Tuesday, December 6, 2011

Saga Twenty

"Don't think about the future.
Just be here now.

Don’t think about the past.
Just be here now.”

― Ram Dass

Life is so fleeting. My dear friend who prayed for my husband's Alzheimer's has now gone on to be with our LORD. She prayed every day from her wheel chair for us while going downhill from Muscular Dystrophy. I am challenged to increase my prayer because of her. My friend was not her disease, neither is my husband his Vascular Dementia and Alzhiemer’s.

I want my husband to feel in control as long as possible. Richard Taylor in Alzheimer’s from the Inside Out writes:

" I vaguely recall a time when lots of people were coming to me
and asking for information and my opinion concerning things
other than myself or my disease." (p. 203) 

So it was that I asked DH if we could attend a memorial service Tuesday night , November 29th, for this dear friend of over thirty years. He said yes. His opinion counts and I didn’t know that he would have said yes—but he did. I canceled four days of substituting which along with trip expenses would put our budget back, but well worth it. We dropped our dog off at the kennel.

Monday we drove over 500 miles to Daphne, Alabama, just west of Mobile. I had not slept well during the night and got up to write a six page eulogy for my friend and so hubby did a lot of the driving that first day.

My friend had also been my bridesmaid. Although we only lived near each other for two years, we wrote and called after that and visited when we could. We would have fun cleaning each other's homes. The years rolled on by. When MD came into her life we e-mailed maybe once a month. She would write “I pray for you every day” at the end of her e-mails. Her only complaint about the MD was that she didn't have the muscles to smile any more.

She was to get one of my unusual gifts for her 66th birthday—a binder of my favorite Scripture. I enlarged the font size to 18 for her binder so she could read easily and she e-mailed Oct. 12th, our last communication, “I don't think I need 18 point font. Maybe something halfway between. Looking forward to my b. d. gift.”  She had her husband contact me to thank me for the gift. She was admitted to Our Lady of the Lake Hospital because her cough was not responding to antibiotics.

I called her hospital room and her husband put the phone up to her ear. “It’s gonna work out,” I said to her. “Either you will be with Jesus or He will help you go through this.” She did give me a faint reply so I knew we were communicating and agreeing. She died the day before turning 66, with MD taking over the muscles in her lungs.

During the trip my husband asked many times where we were going. Then Tuesday morning we arrived in Louisiana, having driven over 200 miles to Baton Rouge, Louisiana, our destination on the second day. We checked into our second Microtel and I checked my e-mail for word on my eulogy from my friend’s pastor. It turns out that my departed friend had scripted her own memorial service and my eulogy was too long. The pastor’s editor was cutting it down!

The memorial service was wonderful. My friend lived well and died well. She and her husband even traveled abroad with the wheel chair. She was always e-mailing about her four young granddaughters whom I met at the memorial service. With fourteen pages of hand written notes on her own memorial service, the program proceeded. First there were slides of her life before and after MD while the Prelude included “When the Roll Is Called Up Yonder”, “When We All Get to Heaven” and “How Great Thou Art”. The pastor read words from my friend, including jokes about heaven and Scripture. She had selected favorite hymns for us all to sing and a sermon he had preached in the past that she had him cut down to eight minutes by his staff editor who had edited me as well. I gave my eulogy as did others. The pastor read her “closing words” and then her “final closing words”. Unscripted: the pastor had us clap for her service which we did at the end.

Wednesday morning, the day after the memorial, in the spirit of my friend (live your life), my husband drove us from Baton Rouge to New Orleans. There was lots of traffic and it was stressful driving for DH. On the bucket list of my husband was the casino. The valet took our car and we decided we could have two hours in the place. He put $20 into a slot machine which he quickly lost. But an item on his “bucket list” had been checked off. We walked around and settled into a buffet for a brunch. Security guards with cages of money went by. We retrieved our car and I drove through the French Quarter letting my husband see the sights.

He had lots of questions on what state we were in and lots of comments that I didn’t make sense to him. What did make sense was to stay in our third Microtel in Marianna, FL. All the rooms are basically the same for an Alzheimer’s patient, and each hotel has a continental breakfast. Thursday morning frost was on the window of our car. We put the header on and waited until the windows cleared. Whenever it is cold in Florida, DH often quips “I think we should move to Florida!” It was best that I didn’t talk too much but just listen to him while I drove or he drove. Here is what he did say:

I will be so glad when I don’t drive anymore. I desire to be a passenger.

We picked up our dog and headed home. The next day I called State Farm Insurance and said we would just be one driver now.

I will miss my friend and will try to keep up
with the family and pray daily for them.

Sunday, November 20, 2011

Thanksgiving Week

Read Sunday morning from Psalm 118:19-21, 29 NLT

Open for me the gates where the righteous enter,
and I will go in and thank the LORD.
These gates lead to the presence of the LORD,
and the godly enter there.
I thank you for answering my prayer
and giving me victory. . . .
Give thanks to the LORD,
for he is good! His faithful love endures forever.

  • Love going to church today in a few hours. So does DH. We bring our lunch and eat together after the worship service. Then we have a counseling class. DH listens while I take notes. I will be finishing up a counseling degree in the next several years. My current paper will be on "Dying Well".
  • We are not going to be camping with that group. A call was made to say we weren't accepted. Both DH and I are at peace with this (although DH might be hurt). We still can camp with Sally and Jake. Sally and Jake are still in the group, but Sally speculates that it is because this group didn't want another person with Alzheimer's.
  • By book is now an eBook on Barnes and Noble. Go to and purchase at $7.69 for your iPad, computer or Nook. Just type in "Getting Off the Niceness Treadmill", the name of the book.
  • I went to a Christian Writer's Conference all day in Orlando Saturday, November 19th. Thanks to Sally and Jake for taking DH to lunch while I was gone. DH is able to stay home by himself, but that sure was wonderful that they thought of this. Sally and I are thinking about introducing our husbands to senior day care, which might work if they go together. These men always have so much fun together. Sally increasingly has to be with Jake and this may help if our husbands can both hang out at a senior day care; they love telling each other the same things over and over.
  • Obsessing. DH now obsesses about that camping group. Jake obsesses about not being able to drive and DH made the mistake of driving when the four of us were together recently. Sally told me later, that it really didn't matter. Jake obsesses about how unfair it is that as a man he can no longer drive. DH often comments on Jake and genuinely cares for him.
  • DH genuinely cares for me. I love him also.
  • I have a week off--no subsituting the week of Thanksgiving. We will be with some of DH's extended family on Thanksgiving. I have a week off to de-clutter, clean. and decorate for Christmas.
  • Most of my Christmas shopping is done. My creative gift this year for birthdays/Christmas is not a quilt like the last two years. This year it is Scripture highlights I have been working on each day. These highlights are printed in a binder for selected people. One family member didn't want it because he said it is "too preachy"--so he is getting an iTunes gift card. Other family members are excited about a binder of Scripture highlights. This is not necessarily a cheap gift for our budget, as I have had to buy additional printing cartridges, binders and mail the binders. The binder shows my excitement for God's word and how it sustains me each day.

Monday, October 31, 2011

Alzheimer's Disease: What If There Was a Cure?

Earlier in the blog I did review The Coconut Oil Miracle and how it helps diseases. But I have been eagerly waiting for this book at the left to come out for two years. Dr. Mary Newport and I even e-mailed each other about the topic of coconut oil and how it can help someone with Alzheimer's. I read the article she wrote here.  Her husband has Early-Onset Alzheimer's and you have to read their love story. I ordered my copy through Barnes and Noble, but you can get it through Amazon with e-books to follow.

This summer when finances were tight, I wondered if coconut oil was really necessary. When I read her book this month, however, I knew my husband needs to have that coconut oil once again.

  • The ketones in coconut oil provide an alternate fuel to keep the brain cells alive. Lots in the book about the science of ketosis.  
  • Dr. Mary's husband's energy returned.
  • Steve Newport's personality and sense of humor returned.
  • His gait or walk returned.
  • Coconut oil seems to take the fog away.
  • I think all of this is true for DH as well.
There has not been significant clinical testing to determine if it works. People tried to stop Dr. Mary's crusade. She was able to speak in Europe about it, but not in our country. Humm. This is the same thing that our chiropractor said about Ribonucleic Acid and CoQ10 that he recommended my husband take. There aren't studies. But we think these supplements do help.

Dr. Mary recommends a combination of MCT (I get this from Vitacost) and coconut oil (I get from Tropical Traditions).See my links at the side. You can't heat coconut oil over 350 degrees Fahrenheit.  You can use coconut oil from the drug store section at Walmart.

I am just using coconut oil, however, and had trouble lately adapting recipes that my husband would eat.  While coconut oil in oatmeal worked for a time with my husband, he got tired of oatmeal for breakfast.

New recipe. There is a simple recipe in this book that may have helped my husband pass that Alzheimer's driving test for the second year in a row--"Coconut Fudge". Lately I have been serving this to my hubby after I got Newport's book and before he took that driving test last Friday.

Melt  chocolate chips and combine with an equal amount of liquid coconut oil. Freeze in ice cube trays. You can add walnuts and/or shredded coconut before you freeze. When frozen, pop each fudge piece out of tray and refrigerate. This works with my husband. I know it does, and he likes the fudge.

This is not a formal review of Dr. Mary's book, folks, but I just had to get the word out. Is coconut oil a cure for Alzheimer's once someone has it?  Probably not, but coconut oil may help prevent health problems in general and improve the quality of life for the dementia patient.

This is good news!

Saturday, October 29, 2011

Saga Nineteen

THURSDAY. I reminded my husband that the driving test was tomorrow morning and he spend almost two hours reading the Florida driving manual. I was amazed he could still give attention to reading. He also pointed out that he doesn't have to drive anymore--that he is content to be driven around. His attitude about driving has certainly changed in the past year, and due to the totaling of one car with the crash last December, we have only one vehicle anyway. "Just do your best, honey," I pointed out. "What if I were in the hospital and you needed to drive to visit me?" So when we prayed Thursday night, we did just put the result of the driving test in the LORD's hands.

FRIDAY. Amazingly I believe my husband passed his driving test yesterday at the Memory Disorders Clinic at Morton Plant Mease Hospital in Clearwater. He did about the same on the written computer test as last year, and therefore needed to pass the physical driving test as he had last year. His only mistake, said the examiner for the physical driving test, was to not look over his shoulder at the blind spot when turning left. Later he remembered her comment and told me that then he would not be paying attention to the road if he had looked over his shoulder.

Because I am conscious of the precious time I have with DH and wanted to enjoy this "date", when we got to Clearwater for the 9:30 appointment, I used my time in the waiting room to research what we might do after the appointment. I had googled "things to do in Clearwater" and none of that was to pan out. Instead a headline in the Clearwater Beacon newspaper provided an opportunity. We would go see a movie produced in the area.

Clearwater, Florida
DOLPHIN TALE. The dolphin "Winter" is the star of the movie. We went to the Clearwater Marine Aquarium to see her, but it was raining and we decided to not spend the time and the money to see her. Instead we headed to the area of the Cinema Cafe where there was a 4:15 showing. With a little time on our hands, we went to Sam's Wholesale where DH sat in the food area while I stocked up on dog food and other non-perishable items I like to get there. Then back to Cinema Cafe for the showing. The tickets were only $5 for seniors and we paid at the end of the movie. We sat in a comfortable chair with a small round table. We ordered drinks and a pizza. Hubby had a Scotch and Water and I had coffee because I would drive home. I don't want to spoil the movie for you, but it packs a huge emotional punch. I cried and hubby could follow the plot.

SATURDAY--today. My Fundraising Goal for the Alzheimer's Walk Today was $150 and I raised $200.00. Thanks to all of you who contributed. Sally, a friend of hers, and I walked today in the rain. DH and Jake hung out at our home in the meanwhile. Because our husbands need things to do, we four went to Starbucks after the walk. I had not been to the Plant City one before because I guess I didn't feel the need to spend the time or spend the money. But it was relaxing to be there.

TO COME. Review of Dr. Newport's book. Consciously this week I cooked with coconut oil again. I found new ways to use it, where hubby had been bored with coconut oil in oatmeal for some time. Could it be that hubby passed the test due to the coconut oil?!

Saturday, October 22, 2011

Saga Eighteen

My husband just asked when we are going to Disney.

"We went yesterday," I replied.

We met Sally and Jake a year ago and the great supportive friendship we have with this couple has developed over this time. In October of last year we went to Epcot with them. Yesterday the four of us went to Disneyworld in Orlando.

It became apparent that my husband's energy is going downhill from a year ago because he could not participate in a day at Disney as he had a day at Epcot.  We chose activities that involved sitting such as three calm boat rides and shows. I took pictures of Jake and Sally on the Tomorrowland Speedway--great fun for Jake who is not allowed to drive now because of he didn't pass his Alzheimer's driving test. When we went to the Monsters, Inc. Laugh Floor, Sally was part of the program; her picture appeared up on screen, and a cartooned character interacted with Sally in the program. How do they do this?! We really did have fun at Disney. Sorry hubby couldn't recall his fun this morning.

My husband keeps his charming personality and is really happy, thank God. Last Tuesday night we went to Barnes and Nobel for me to pick up my ordered book on Dr. Mary Newport's book on Alzheimer's and coconut oil. (Review to follow.) Then we went to dinner at Smoky Bones next door. I asked DH what was on his mind. He said,

"How happy I am!"

The young man who waited on us also chatted with us because business was slow. He is going to medical school. I told him to consider finding a cure for Alzheimer's. Hubby told the waiter that he feels fine and loves being retired. I have reflected on this and realize how fortunate I am to have a happy husband. Others experience the anger of their Alzheimer's loved ones. I have rarely experienced that and am claiming Proverbs 26:2 if I do because it is the Alzheimer's that causes the change of personality.

Sally and Jake had a power shortage at their home and are having to replace some appliances. This is hugely confusing to Jake and Sally misses her once capable husband who took care of items such as this. My husband just tends to let me take care of things. A year ago he weeded I noted on the calendar. Now I weed and don't keep up with it. Hubby keeps putting off mowing the lawn. A neighbor has noticed this and has mowed our front yard twice. I need to learn to mow the yards--front and two backyards. When we had a minor plumbing problem recently, my husband just calmly let me handle the situation and the $216 check.
Seventy years are given to us! Some even live to eighty. But even the best years are filled with pain and trouble. . . . Teach us to realize the brevity of life, so that we may grow in wisdom.  from Psalm 90 NLT
"Can we do something fun today?" hubby asks.

"When the lawn is mowed, "  I say. Midday after I started this post he goes out to mow the lawn. Thank you LORD!

Next week's anticipated blogging posts: 
  • Review of Alzheimer's Disease: What If There Was a Cure? by Dr. Mary T. Newport
  • My husband's second ALZ driving test 
  • ALZ walk--support if you haven't by clicking on top right link

Monday, October 10, 2011

Learn as You Go or Prepare Ahead?

“It is best to learn as we go, not as we have learned.”
― Anonymous

Some things I have learned as we take this Alzheimer's journey:
  • My pastor and trusted friends can't really always advise me. They can pray.
  • My husband's children don't know what to say. I think they admire our journey from a distance and certainly hope they remember us in prayer.
  • My husband has a VERY poor sense of time, not just short-term memory. Because he knows this, he regularly checks with me.
  • My husband enjoys his life. He lives one moment at a time. This includes seeing movies repeatedly. His favorites include "The Titanic", "Walk the Line", "Fireproof" and "Pearl Harbor". Old movies are best because the new ones have too much action and intrigue often to follow.
  • My husband loves me. We tell each other this often. I am with him in his journey.
  • I learned to accept sundowning episodes and the anger of my husband because of the missing neurons in his hippocampus. When he called me an A-Hole the other day, I was calm. Later I told him what he had said and he apologized.  We marry a man who doesn't swear, and then they get Alzheimer's and swear! This is God's lesson to me to rely on Him for MY patience.
  • There is a wonderful blogger network out there. We encourage each other.
  • Provide a lot of clues for hubby to manage on his own when I am gone.
  • Get in a support group. Sally and I are in one that meets monthly. Hubby and I are in one that meets monthly.
  • Scripture keeps speaking to me with my caregiver's stress.
  • Have an Alzheimer's driving test. Hubby will have his second one Oct. 28th.
On the other hand, there are some things I have to prepare for:
  • My own health. I got into emotional eating when I realized that he has Alzheimer's. I need to prepare for the Alzheimer's walk on Oct. 29th also and appreciate those who have contributed. You can do so on line. Great encouragement to me and "Ann", my Alzheimer's Association support group facilitator. Her team that I am no needs to raise more money. Click on the link at the top right. I have  thanked people who contribute in person or by e-mail. 
  • Simplifying our life. Keep things in the same spot that my husband is used to. Use priorities as in Staci Eastin's book reviewed here.
  • Get credit cards paid off while I can work extra jobs.
  • What I can't prepare for is in the LORD's hands. Questions remain such as what if I can't take care of hubby in the future. Yet the Lord is my great Caregiver.
Worry weighs a person down;
an encouraging word cheers a person up.
Proverbs 12:25 NLT

Thanks to my Associate Pastor who e-mail me that he and his wife are praying. This was an encouraging word today and to his wife and others who contributed to the Walk or contribute by prayer.

Sunday, October 9, 2011

Amazing Grace Author and His Memory

John Newton, author of favorite hymn "Amazing Grace":

My memory is nearly gone; but I remember two things:
That I am a great sinner,
and that Christ is a great Savior.
I love the sweet prayers of my Christian Alzheimer's husband. The soul and emotions of an Alzheimer's patient are intact and they will have super quality time in heaven. From that great hymn by the hymn writer who lost his memory:

I once was lost, but now am found,
was blind, but now I see. . . .
When we've been there
Ten thousand years,
bright shining as the sun,
We've no less days
To sing God's praise
Then when we'd first begun.

Hank Hanegraaff on this video UTube Q & A on Alzheimer's Patient reinforces the soul of the Alzheimer's patient. It continues. One day it will be reunited with a whole, healed body at the resurrection of the saints.

Meanwhile God does not hold accountable the anger and confusion of our loved ones with Alzheimer's. Jesus died for those sins and confusion. But we have the privilege of having the divine CAREGIVER, our Father in Heaven,  to help us earthly caregivers.

Thursday, September 29, 2011


I think it is so important to be WITH our Alzheimer's loved ones. They have a lonely journey if we are not there for them.  My husband wants to go WITH me on any and all errands.

I think of Sue who has stayed home WITH her hubby. He is now in the VA hospital and she can work part-time again. I saw her Wednesday and was able to hug her. We both know what we are going through when we hugged yesterday. That's the sort of hug that I give Sally when I see her. That's the sort of hug I want to give the other ladies who write/comment on this blog. I think I got the idea of HUG from Dolores.

For Pink Lady Dana who commented on the last post, I have a thought. SHADOWING. I don't know your situation there in California from here in Florida, but I would say go to the grocery store with Steve. I have read somewhere that Alzheimer's patients like to shadow their caregivers, like a puppy. Socialization helps them. We can either accept this, or we can get annoyed.  It doesn't matter if our husbands follow or if we go slowly and hold their hands. They are WITH us. Our lives have to slow down. We don't get the plan we think we need, but we get the fulfillment of being where the LORD wants us to be at this time. The Christian marriage is compared to Christ's love for His church, His bride. Christ desires to be WITH us, only we better be the puppy dog following Him, not the leader who demands He follow us.

Skye Jethani wrote a new book--With: Reimaging the Way You Relate to God.  I am thinking about his prepostions, OVER, UNDER, FROM, FOR and WITH:
  • Life OVER God. People can live without regard to God, maybe angry that God has brought Alzheimer's or some other situation into their life. They may take matters into their own hands like taking a substitute love as Barry Petersen did in Jan's Story that I wrote about here in a July book review several months ago.
  • Life UNDER God. This would be a life of duty WITHOUT the emphasis of fellowship. Legalism. These people bargain that their adherence to rules will mean that blessing must follow.
  • Life FROM God. Christians in this category go after His blessings and consumerism taints their relationship with our Father.
  • Life FOR God. People run around doing God's work and being nice. I wrote about that problem in Getting Off the Niceness Treadmill. But it isn't about what we can do for God that gives our life meaning, that pleases Him. Everything, even the mundane, is for His glory.
  • Life WITH God. Fellowship with God. In Acts 4 the members of the council saw that Peter and John, ordinary men, had been WITH Jesus.  Jethani calls believers  to be WITH Jesus.
Back to the subject of this post. How are we WITH our Alzheimer's loved ones? I am WITH my husband when we pray together and how exciting it is that the soul in an Alzheimer's patient will be there beyond when the mind goes. When I go off to teach, I insist my hubby and dog Ziggy wave goodbye and blow kisses at the window--our tradition that says we love each other. I call him when I get somewhere to say I have safely arrived. I just sat with him at the end of  a romantic movie, even though I had seen it before. I am in this journey WITH him. I just made myself unavailable to substitute one day a week so I can be WITH my husband. One day I will not be able to leave him alone at all.

Lord, give me the fruit of the spirit in Galatians 5:22, 23
--especially gentleness and self-control--
so I can be WITH my Alzhezimer's loved one,
in sickness and in health until death do us part.

Monday, September 26, 2011

Saga Seventeen

This blog has over 10, 000 hits, according to the site meter. How does this happen? I speculate that the labels I provide at the bottom of the blog gets people here. Or I post on other Alzheimer's blogs and "NewKidontheBlogg" takes people here.

Last Monday I made myself unavailable to substitute teach so we could go to Sally and Jake's church for their monthly senior’s event. Everybody brought a bag lunch and a collectable hobby to share. Sally was in charge and so she had me do my "raps" for the group. Sally shared her antique trays, Jake—his bird houses, and hubby his toy horse collection. I shared four items from my ruby red glass collection.

Usually pills and breakfast will happen after I leave the house, when hubby gets his false teeth in. He needs to eat something when he takes those pills and three days last week he ate breakfast, but no pills while I had to leave to substitute teach, which I did Tuesday through Friday. Saturday when I was off to teach a first-time driver’s class, I had a plan for those pills. Put them on the plate with his breakfast, because putting the pill box by his breakfast doesn’t cut it. Great solution.

Alzheimer’s patients need socialization and hubby loves to get out. Wednesday night we went to Toastmasters, the club that I helped form at a church in Lakeland. I tend to talk too much there—go over my time limit, but when DH is called on for “Table Topics” at Toastmasters his verbal skills are excellent--often humorous and to the point for this extemporaneous response.

But are his verbal skills really excellent? I love his prayers, but I realize that he now uses limited vocabulary and concepts when he prays at night. He thanks God for the "good" day and goes on about the "good" day, without specifics of what happened, for maybe four or five sentences.

He can ask me questions successfully (many times it is the same question up to six times), but he cannot respond to my queries. For example, I spilled milk on the dining room carpet and wanted him to bring me towels quickly.

“What kind?” he wants to know. “Paper towels?”

“No. Hurry and get towels out of the basket on the pink trunk in our bedroom.” That was TMI (too much information) for him. I ended up getting the towels and as it was Sunday morning and we had to leave for church, I wouldn’t be able to clean that carpet.

What about his reading skills? He doesn’t always like to read the daily clipboard schedule I make for him. He has another pad that he writes on to supplement that daily schedule. He will then cross of the item after it has happened. He reads the bulletin and hymns in church, but doesn’t read so much during the week. There came a time when Dolores’s husband stopped reading—something he dearly loved to do. Hubby loves to watch videos and so far that is what he does while I am off supplementing our income to try to pay for my dental work and get our credit cards paid off for when I have to stay home full time as Dolores and Sue have had to do.

Social Sunday Night. We get home from church activities about 4:30 and get ready for guests to come at 7 PM for another pool night at our home. I am glad the carpet doesn't smell from the spilled milk--yet. Three gentlemen and Sally and Jake's delightful ten year old granddaughter play pool while we wives play Mexican Dominos. The granddaughter starts enjoying our dog Ziggy, who also liked the attention and decides pool is more interesting than her Math computer game. DH and Jake sit in the family to watch TV while Bob goes to the den ready to play pool. Now hubby doesn’t realize as a host he needs to be playing pool. I remind him and like Archie Bunker in the old TV comedy, hubby shushes me up. About five minutes later the two Alzheimer’s husbands join Bob in the den where the granddaughter has fun playing with three old men.

“Lana,” I quip as we ladies play our domino game, “do you realize your granddaughter is learning to enjoy playing pool with men?” We ladies laugh.

It is so great that our two husbands are taking turns playing with two others who keep track of the game. Good week, but verbal skills are declining I realize.

The Sovereign LORD has given me his words of wisdom,
so that I know how to comfort the weary.
Morning by morning he wakens me and opens my understanding to his will.
from my devotions this morning--Isaiah 50:4 NLT

Sunday, September 18, 2011

Who Keeps Promises?

This issue has been on the news this week. I addressed this with Jan's Story review on this blog on July 1 below.

When I wrote about Jan's Story, a comment was made that led me to McQuilken's book shown above. He writes on p. 23:
I have been startled by the response to the announcement of my resignation. Husbands and wives renewing marriage vows, pastors telling the story to their people. It was a mystery to me, until a distinguished oncologist, who lives constantly with dying people, told me, "Almost all women stand by their men; very few men stand by their women." Perhaps people sensed this contemporary tragedy and somehow were helped by a simple choice I considered the only option.
LORD, that you for my husband. I want to show love to him all my days, no matter how difficult it becomes. Help men and women caregivers who come across this blog to also keep those promises. Help me live longer than he does, if that is your will. Amen.

Sunday, September 11, 2011

Book Review: The Organized Heart

In the past twenty-four hours I have read a short book. After church I had to tell ladies at church about it, and even one man is going to get it for his Kindle. Pure Excitement I have for this book by Staci Eastin--The Organized Heart: A Woman's Guide to Conquering Chaos, published by and released in March of this year. This is the kind of excitement I get when I discover something in Scripture that speaks right to my heart. I have needed her book.

Periodically I blog organizing and de-cluttering on this blog. But on my way to organizing the clutter and chaos at home, we had that crash I wrote about last December. After that with sore back and painful hands I could do less about the clutter issues. I did want to. I admire Dolores and others who have their act together at home and they are able to be that caregiver to their husband with an orderly home. Now that I have been released by the chiropractor, I am going to the gym and doing more.

Mrs. Eastin puts heart and faith into what I needed to read. Where does she start? Mrs. Eastin's book is not about a system. She writes that she had a motivation problem--not a problem of whose system to use. Eastin in this short book deals with four idols. Here are some quotes:
The disorganization in my life was not due to lack of knowledge or skill and it was not due to a problem in my childhood. Rather, it's a broken belief system: a heart issue, a sin issue. At the end of the day, it's idolatry. . . . We never conquer sin by adding more rules. . . . My attempts to get organized always failed because I tried to change my habits without letting the Holy Spirit change my heart. It was only when I saw the sinful motivations behind my bad habits that I could see lasting change in my life. (pp. 11, 12)
The Idol of Perfectionism
Perfectionism prevents us from living our lives. It prevents us from enjoying our families. It robs us of joy. And most of all, it prevents us from basking in God's grace and serving in the strength that only he can give. God knows our talents, our energy level, and our resources. He alone is perfect, and he can work mightily, so we can trust him. (p. 31)

 The Idol of Busyness
Just because you can do something doesn't mean God has called you to it. . . . Fear of man indicates that we find our worth in pleasing others rather than pleasing God. Instead of working to bring glory to God, we hope to bring glory to ourselves. . . . God is not sitting helplessly in the wings, hoping we'll come through and help him out.  (pp. 35, 36, 39)

My book, Getting Off the Niceness Treadmill,  deals with some of these issues of the fear of man and learning to give God the glory. Eastin puts it simply:  God is not glorified in the amount of things we get done, the number of spaces we fill on our calendar, or the length of our to-do lists. God is pleased when we serve him with sincere hearts. (p. 41)

 The Idol of Possessions
I have tried to study couponing. Eastin points out that it can all lead to hoarding. Mmmm. She writes: Excess possessions will rob you of your peace, add unnecessary stress to your life and hinder your ministry to others. (pp. 51)

The Idol of Leisure
When everyday life is a race from one urgent deadline to the next, we withdraw from open fellowship with God and submission to his will. . . . The procrastinator loves to hoard her time for herself rather than work diligently on the errands and tasks God gives her. . . . Many women are addicted to TV, social networking sites, shopping, reading, and other hobbies. While none of these activities are necessarily evil in and of themselves, if you indulge in them to the extent that they prevent you from doing what God has ordained for you to do, they are sin. . . . Are you a wise steward of your time? Do you prayerfully schedule your days for what God has called you to, including appropriate time for real rest?  (pp. 66-69)

In her chapter on difficult circumstances, she doesn't deal with the Alzheimer's caregiver. But the author does point out both our responsibility and God's sovereignty. God, the divine Caregiver, will work things out and we can therefore be content. Unlike FlyLady who has an elaborate system, Staci Eastin at the end of the book gives principles to use after the idols of your heart have been dealt with.

What has this short book done for me? It has freed me to not worry excessively about FlyLady's lists, couponing or another system from one of my books or magazine articles. If I can pray over my schedule, serve my husband in his lonely journey in Alzheimer's, serve others as well, and (without guilt) schedule time for my own leisure, then I can have peace and know I am bringing glory to God.

It has always been that one day in heaven, I want Him to say, "Well done, Carol. You knew you could trust Me as your divine Caregiver to take you through your earthly caregiving adventure."

Staci Eastin blogs at Writing and Living. I am going over to her blog now and thank her.

Monday, August 29, 2011

Simplifying Conversation

  • One idea at a time. One subject and one verb in a simple sentence. No compound sentences.
  • Use the word, not a pronoun.
  • Keep very calm.
  • Don't mention the recent past because hubby can't relate.
  • DH will write things down, a way of dealing with his memory issues, but needs my help to spell.
  • LMT (lost my thought--see cartoon above). Do not interupt him because he will lose his thoughts.
These seem to be the cardinal rules of dialogue now with communicating with my Alzheimer's husband. I have read some of these suggestions elsewhere, but just decided to write them all down.

I can do this caregiving bit with the Lord's help. The Lord is my shepherd, my caregiver!

Why am I discourged?
Why is my heart so sad?
I will put my hope in God!
I will praise him again--
my Savior and my God!
. . .
But each day the LORD pours
his unfailing love upon me,
and through each nght I sing his songs,
praying to God who gives me life.

 from Psalm 42

Tuesday, August 23, 2011

Just a Word: Friends Encounter Alzheimer's by Rose Lamatt

Leaving two grown kids and an inattentive husband, author Rose walked out of  her marriage and her agoraphobia to a life with a new roommate, golfer Carol Beinbrink. Life is good for the two friends, until a WORD comes into their life. That word is Alzheimer's. Carol is diagnosed with Just a Word--Alzheimer's. 

I found out about this Florida author on The Alzheimer's Reading Room when Bob DeMarco highly reviewed her book . The true story reads like a well-crafted novel as Rose and Carol wrestle with the inevitable stages of Alzheimer's, the stages of grief and the death of Carol.   

I have now the privilege of being a Facebook friend of Rose and she messaged me that the book would be depressing for me. Yes and no. Yes, it was depressing because this is a path that I need to go down with my husband. But NO, not depressing, because it is so well-written and I am cheering for the progress of Rose in stepping out of panic attacks she had in her earlier life. I cheer the bold caregiver and Alzheimer's advocate she becomes by the end of the book. Not depressing because I realize that I can go through this process also. Rose did. With God's help, blogging friends, church family and the Alzheimer's support group I can go through this stress and challenge.

Here are some quotes from the book and my comments following the quote:
  • We don't talk of it and keep an "up" feeling between us. p. 45 My husband and I are like that and to some degree we just continue to live each day as happy as we can.  (However, we have been able to be honest about this disease in the past months since attending Alzheimer's Association events together.)
  • I see her embarrassment when she stops mid sentence in conversation, not able to find the right word. (p. 57) Here is some dialogue I had with DH recently, not as serious as Rose and Carol:
I forgot a document at home and DH says,
"Lady, you take the cake and I'm the one with the . . . What is it?"
Me:  "Short-term memory." We go back home to get the document.
DH: "I will give you one more chance. . . . [To our dog] What are
we going to do with mama's memory?"
  • Next to a chair I place my hands on her shoulders and set her down, then sing, "Oh, we ain't got a barrel of money." (p. 105) I have mentioned before on this blog that this song, "Side by Side", is also our song--it's so upbeat and really anyone with a chronic illness needs a loved one to be by their side.
  • I like how Rose quotes the saying, "It's much better to give than to receive." (p. 140)  More than a saying it is from Acts 20:35. 
Rose cared for her friend for fourteen years. In the process she really finds herself and she writes,
Being with someone who is dying of Alzheimer's, especially because the disease takes so long, watching the decline is a gift. We watch the person 'undo' their life at a slow rate. We may hate watching it, but in the end, I was happy to go through Carol's Alzheimer's Journey to death. It brought me closer to God than I'd ever been before. (pp. 176, 177) 
Rose, thank you for the realistic
and inspirational story that you weave.

Thanks that you continue to help Alzheimer's patients and their caregivers now as you volunteer and work in an assisted living facilities. Just A Word  is not depressing--it is hopeful as it ends.

Tuesday, August 16, 2011

The Experience of Dementia as a Journey –Author Unknown

I am going on a long journey by train. As I begin, the city skyscrapers and country landscape look familiar. As I continue my journey, the view reminds me of times gone by and I feel relaxed and comfortable. The other passengers on the train appear to be feeling the same way and I engage in pleasant conversation with them.

As the journey progresses, things begin to look different. The buildings have odd shapes and the trees don’t look quite the way I remember them. I know that they are buildings and trees, but something about them is not quite right. Maybe I’m in a different country with different architecture and plant life. It feels a bit strange, even unnerving.

I decide to ask the other passengers about the strangeness I feel, but I notice that they seem unperturbed. They are barely taking notice of the passing scenery. Maybe they have been here before. I ask some questions, but nothing seems different to them. I wonder if my mind is playing tricks on me. I decide to act as if everything looks all right, but because it does not, I have to be on my guard. This places some tension on me, but I believe I can tolerate it for the remainder of the trip. I do, however, find myself becoming so preoccupied with appearing all right that my attention is diverted from the passing scenery.

After some time, I look out the window again and this time I know that something is wrong. Everything looks strange and unfamiliar! There is no similarity to anything I can recall from the past. I must do something. I talk to the other passengers about the strangeness I feel. They look dumbfounded and when they answer, they talk in a new language. Why won’t they talk in English, I wonder? They look at me knowingly and with sympathy. I’ve got to get to the bottom of this, so I keep after them to tell me where the train is and where it is going. The only answers I get are in this strange language, and even when I talk, my words sound strange to me. Now I am truly frightened.

At this point, I figure that I have to get off this train, and find my way home. I had not bargained for this when I started. I get up to leave and bid a pleasant goodbye. I don’t get very far, though, as the other passengers stop me and take me back to my seat. It seems they want me to stay on the train whether I want to or not. I try to explain but they just talk in that strange language.

Outside the window, the scenery is getting even more frightening. Strange, inhuman-looking beings peer into the window at me. I decide to make a run for it. The other passengers are not paying much attention to me, so I slip out of my seat and quietly walk toward the back of the car. There’s a door! It is difficult to push, but I must. It begins to open and I push harder. Maybe now I will get away. Even though it looks pretty strange out there, I know I will never find my way back home if I do not get off this train. I hear the door shut. They take me back to my seat. I realize now that I will never get off this train. I will never get home.

How sad I feel. I did not say goodbye to my friends or children. As far as I know they do not know where I am. The passengers look sympathetic, but they do not know how sad I feel. Maybe if they knew they would let me off the train. I stop smiling, stop eating, stop trying to talk, and avoid looking out the window. The passengers look worried. They force me to eat. It is difficult because I am too sad to be hungry.

I have no choice now. I have to go along with the passengers because they seem to know where the journey will end. Maybe they will get me there safely. I fervently wish that I had never started out on this journey, but I know I cannot go back.

Author Unknown

Tuesday, August 9, 2011

Saga Sixteen

It's been three weeks since I have posted here. Note, if you just want to read our sagas, go to the right and click sagas. It really tells our story.

Speaking of our story, my husband and I now freely talk about his Alzheimer's and Vascular Dementia. In fact, we have been to two support groups (July 28 and August 8) where both the person with Alzheimer's and their spouse/caregiver are part of the discussion. Both of these have been at the Alzheimer's Association in Eloise, near Winter Haven, Florida. At the second one some of those with Alzheimer's painted; you see, folks, the economical Alzheimer's Association rents rooms with an art association. Sally and Jake were not at these sessions. August 8th they were babysitting a grandchild, and July 28th they were on a trip to the mountains.

Their trip, you think, would have satisfied Jake's yen for the South Carolina mountains and the cabin he built there and later sold. Sally and Jake rented a nearby cabin and went to the church they were used to going to when they stayed up there, but the road to the cabin that Jake build had a chain link on it and Jake was not able to see that cabin and how the new owners were doing. Somewhere in the recesses of Jake's stage-two mind he thinks that he and my husband can get up there and live without us wives. My husband knows better. At one point on their vacation he wanted to walk "home", but Sally was able to get him back to their rented cabin. They came home last Thursday. When we went to dinner the next night, Jake had trouble recalling his recent trip, the horseback riding, etc.

This afternoon Sally and I are going to our monthly Alzheimer's Association meeting in Plant City. Jake will hang out at the house with DH. This morning DH and I discussed orienting Jake in pool playing. Jake actually won a game with me once--not hard to do. I cleaned off the pool table from all my projects (currently I am teaching a counseling class) so they can play pool. Hope they do play pool while Sally and I are gone. DH, after all, gets very bored with Jake's obsessions about getting his driver's license back, and stealing away to the mountains. This is not to say that DH has no obsessions now, but I have learned to manage his obsessions.

My husband is happy and not bothered by his disability. When we go out to eat we blow the straw paper covering at each other before putting it in our cold drink. We play blue grass music and when the four of us are out, both Jake and DH sitting in the back seat of the car move to the music. DH and I sing  the song "Side By Side" in the car (I have it on my iPod).
Oh, we ain't got a barrel of money
Maybe we're ragged and funny
But we'll travel along
Singing our song
Side by Side
Don't know what's coming tomorrow. . .
Ironic. In fact, I don't know what's coming tomorrow, but live one day at a time, ever grateful that my husband and I have such good times and communication.

Monday, July 18, 2011

Saga Fifteen

Sharing the load. Today Dolores communicated with me that last night her husband didn't recognize her or where he was. Sigh! Today he is fine, however, knowing her and that they are home.

Sally and Jake. Sally said that Jake did not recognize one of his adult sons that they saw recently. Sigh! Now Jake recognizes us, and I would have thought that son from his first wife was part of his long-term memory. My friend Sally has come up with a great idea--once a month socials at our home. The four husbands will play pool on our pool table and we gals will play games. I love the idea! Socialization is so good all around. Jake doesn't drive any more due to his not passing the Alzheimer's test and we hope he is done obsessing about not driving.

Since last December, after our car crash with that DUI driver that totaled one car, my husband didn't want to drive again. We decided to not replace that car and get by with one car. When I needed him to drive the popup camper we got from Sally and Jake, however, DH started driving again in February. He really is a good driver and my husband has only driven the car when I am in it. He drives well, although needs directions from me and will get tested again in the fall.

However, this morning my husband went out BY HIMSELF to go get gas for the lawn mower. I was scared. (Maybe last year sometime he had gone out to get gas for the lawn mower and it took him three trips to remember why he went out!) Will he remember how to come back home? Will he remember how to use the debit card? He drove less than a mile and a half. I called him on his cell phone and fortunately he answered. He returned and poured the gas directly in the riding lawn mower, not remembering how to use the gas can nozzle. The front and back lawns got mowed.

June 1 to July 6. Sally, Jake, DH and I did go to six workshops co-sponsored by the local Alzheimer's Association and USF. Ann wrote about this in May on this blog.  It was in Winter Haven and Sally and I took turns driving. We wives sat in the front of the car and the husbands in the back seat on the 45 minute trip back and forth. We usually played upbeat country or oldies music for the husbands on the trip--on my iPod or with Sally's CDs. (My husband is very sensitive to Jake not being able to drive and so when the four of us are together either Sally or I dive.) At each workshop session we wrote a weekly ACTION Plan. DH and I started going to the gym again. Sally and Jake had been going to the YMCA. At that workshop we were more open about Alzheimer's. Everyone there was either an Alzheimer's patient or a caregiver. I was so proud of my husband's sharing as we sat around the table. A lot of Jake's issues were dealt with in the workshop. The four of us were also interviewed after the workshop. I got more out of the workshop than perhaps my husband did, because he wouldn't remember from week to week. I felt more empowered after the workshop.

Supplements recommended by our chiropractor. Since our December crash, we had been going to a chiropractor (I am still going for my back.) The chiropractor recommended Ribonucleic Acid and CoQ-10 supplements for my husband from. There are no studies on the use of these supplements to improve thinking for Alzheimer's patients, but I do think they have helped his thinking. DH is cheerful and uses parts of his brain to compensate. Now the short-term memory is not any better, but my husband is great. He takes two 175 mg of RNA twice a day and one 400 mg C0Q-10 with his statin medicine at night. I still cook with coconut oil when it works out. I put a link for the RNA from Standard Process Inc. under Favorites at the right.

Thanks for your prayers for Dolores, Sally and I and our husbands. 

Thursday, July 14, 2011

Ten Top Caregiving Mistakes

  1. Thinking you can do this on your own. You need a support group or system for YOU, the caregiver.
  2. Thinking your loved one fits a pattern of another person with Alzheimer's. Everyone is different and diagnosis is tentative. My husband has Mixed Dementia, for example, and I am so fortunate at how pleasant he is.
  3. Thinking you can argue with a person who has Alzheimer's. It won't work. He will obsess about an issue that is on his mind. She will want to do things from her long-term memory that maybe she can't any more--just let her try.
  4. Not establishing a schedule or routine for your loved one. This morning my husband wanted me to print out that schedule, even though we are essentially staying home.
  5. Not being proactive and not thinking down the road. Simplify life, have your will completed. How can you make the house safe? How can you keep items where they belong so that your loved one knows where to find it?
  6. Withdrawing from your loved one emotionally. They have changed, but that doesn't mean they don't have emotions. They lose memory, but not fondness for your love. And you need their love also!
  7. Stop living your life! No! Go to Disney if they can handle it at their stage. Take them along on errands as long as they can do this with you.
  8. Being embarrassed by your loved one. Wink at someone when you know they are hearing a story for a second or third time.
  9. Doing too much for them. There is a lot they still can do to help. My husband folds laundry I put on the pool table. He also fills up bottles of diet Lipton green tea and water. (We reuse our bottles.) He mows the lawn on a riding lawn mower and sometimes weeds.
  10. Throwing your hands up in despair.  Life doesn't owe you no problems. God is there for you.

Friday, July 1, 2011

Jan's Story by Journalist Barry Petersen

Recently a caregiver gave me Jan's Story by CBS foreign correspondent Barry Petersen. Sally read the book first and clued me in that it ended differently than she expected. I wondered why she said the ending was different.

In reading Jan's Story I discovered it is really BARRY'S STORY of how he copes with his wife Jan's Early Onset Alzheimer's. Jan becomes angry, confused and has friends who aren't there. She hardly recognizes Barry at the end of the story while Barry becomes lonely and overburdened with her care.

What did I as a caregiver learn from this caregiver/correspondent? Barry chronicles the stages of Alzheimer's as Jan goes through them. He writes to family and friends in the summer of 2007:
I am taken aback at how fast Jan's short term memory seemed to evaporate . . . it robs us of sharing daily experiences, and robs her of savoring the good things that are a part of all of our daily lives . . . I am losing more than a friend . . . also slipping away is the one person who was my confidante, with whom I could and did share everything. I feel like I'm trapped in a movie, watching it unfold and already know the ending . . . but with no way to rewind back to the good parts. (pp. 53, 54)
I can identify. I noticed that when my husband prayed before we went to sleep last night that he did not pray in specifics, but he did thank the Lord for the good day we had yesterday and the good day we would have tomorrow. But the Lord is the third party in our marriage and He takes us through each day. My husband's daily humor and my daily Scripture reading such as Psalm 23 takes me through the day.

Even when I walk
through the darkest valley,
I will not be afraid,
for you are close beside me . . .
Surely your goodness and unfailing love will pursue me
all the days of my life,
and I will live in the house of the Lord forever.

So much is familiar in Jan and Barry's story--having to order for my husband in restaurants, his misplacing things, his compensating for memory loss, sundowner's problems. Barry talked about Jan's coping experiences--ANGER, PRETENDING, SILENCE.  But my husband hasn't deteriorated as much as Jan has by the end of the book. 

While I respect Mr. Petersen and his riveting journey as a caregiver, his values do not represent my Christian values.  I did not see Mr. Petersen looking to the Lord for strength and guidance in his caregiver's story. He brings a third party (not the Lord), a new woman into the story for his loneliness. Barry seemed to find people to support his new woman while his wife is in assisted living. Even Jan's mother suggested Barry needed a side romance!

I am a caregiver who takes a different path. I have a different view of fidelity and an awesome God who is with me in this journey. Life doesn't owe me a husband. I married for the first time when I was 40 and when that husband died I was a widow for eight years. I love being married to my husband and we have so much joy in our marriage. Life doesn't guarantee a husband not get Alzheimer's. But I do have this chance to be faithful to my husband and be the best wife I can be while the Lord takes me through this.

One of my colleagues in Toastmasters cared for his wife for twenty years--so inspiring. He was the gentleman who recommended the book that I reviewed here, No Act of Love Is Ever Wasted. Mr. Petersen and I run in different circles, and I sure wish he had waited and found the strength of the Lord Jesus Christ.

When I got to the end of the book, I realized a blogger I follow had actually reviewed this book and had seen Petersen interviewed one Sunday morning. Barry's new lady is mentioned in this blog. See Early On-Set Blog Spot in January of this year which I did read. Here is how I responded:

I married for better, for worse, in sickness and in health, until death us do part.

Then the blogger herself responded with:
In his heart your husband knows he is lucky in love.
I found a Huffington Post article by Barry Petersen where he talks about guilt as he does in the book. See
Can a Marriage Die When the Wife is Alive. Here Peterson writes:
I have no answers for others, offering only what I have done and learned and chosen, knowing that it was right -- for me. I wish them luck. Like me, they will need it.
There is more than luck, Mr. Petersen. And there is God's help, grace and forgiveness for you.

 The name of the LORD is a strong fortress; the godly run to him and are safe.  Proverbs 18:10