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. 

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.

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