WITH

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.

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

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.

Pat Robertson Would Not Keep Promises

Robert McQuilken Keeps Promises

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.

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 CruciformPress.com 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.

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

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.

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

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.

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.