The Rain

There is a beautiful song on Alzheimer's at http://hidingfromtherain.com and it is also on YouTube at
http://www.youtube.com/watch?v=07a0cUZS5ak.

Hubby was stubborn this morning. Kenny came for pill, shaving and showering and hubby would have none of it. However, as Kenny reminded me, it is raining outside. By midday, Kenny came back and the pills, shave and shower were accomplished. Kenny added a grocery bag with a hole at the bottom attached with a rubber band so that the shower water could warm up while hubby was sitting in the shower. Then when the water was a warm temperature, the bag was removed.

From a Pinterest board

We do know that Alzheimer's patients are afraid of water.  I am reminded that with the change of time and seasons, sundowning behaviors happen.

Pride Goes Before Destruction



MRI discovers torn cartilage



Light pink curb I thought was part of walkway

Pride goes before destruction, we read in Proverbs 16:18. Well I had a lot of pride and I fell over a long raised curb that separated our car from a brick walkway. At dusk it appeared to me that the curb was part of the walkway.

I commented in the last post about hubby being sad Saturday night as I left the hospital. He asked if it was his permanent home and of course I explained that he was in the hospital because of his knee. 

All Sunday I was back to the hospital with him. A person with Alzheimer’s doesn’t understand the hospital. He asked where our dog is. I should have put more lights on in the hospital room to avoid sundowners, but I forgot. I was tired and tried to sleep in the nice fold-down chair provided for guests. I tell you, that the staff there was wonderful—Cindy, Roy, Lou Ann, Lorrie and Tracey and I should have told have told them about sundowners as I did about his coconut oil that they kept in a refrigerator.

We left the dimly-lit hospital room as hubby’s bed was wheeled a brightly-lit room where the MRI specialist Carletta gave clear instructions to my husband as he entered her MRI machine that was to discover what was wrong with that right knee that had been giving him problems. Carletta’s sparkling personality was so much fun. She put music on my husband’s head set to mask the noise of the machine and he behaved himself all during the test that was maybe half an hour. 

Back in the dimly-lit room hubby had a sundowner’s episode, but I listened carefully and oh was I starting to be humbled. DH was uncharacteristically hurling all kinds of innuendos at me, threatening our marriage. I did start to listen, however, because I am being trained as a counselor. What is the feeling behind what he is saying even if the reality is skewed by an Alzheimer’s sundown episode?

Pride lesson number one. Hubby doesn’t feel connected to me. What he said was like a knife in my heart. I go around the house taking care of more than my share of work in household tasks, dare I say 99% of what needs to be done. But, my primary task and joy is to be WITH him. I have even blogged about this privilege of being with him as his wife. He told me point blank that I was becoming too bossy and that we needed to decide things together. I agreed with him. Everything I think is important to get done has become my altar above being a wife. I could understand how he was feeling and did not dismiss this, nor his anger.

So before going home for the night I gave him his cell phone so he could feel in charge. Meanwhile he called out Pastor who asked him where he was. He could not say where he was and Pastor had him give the phone to someone nearby. I was told that a nurse did talk with our Pastor.  Meanwhile when I got home, hubby called and ordered me back to the hospital, with strong statements that seemed to reflect on the security of our marriage. I was taken aback, but decided to take my weary bones back to the hospital. I even stopped and bought him ice cream.

It was as I got out of our car in the parking lot at dusk Sunday night that I fell. Pride goes before destruction, and a haughty spirit before a fall.  Down on my left side. I had learned to not brace myself in a fall and didn’t hit my head. But I was mad and in pain. Again with my pride I thought this fall was so unfair. Why had my husband insisted I return to the hospital after hours--so unreasonable, I thought!

I tried to hold back the tears from the pain as I made it to Third North with his ice cream. He was so glad to see me and had none of the anger of the previous hours. The husband in him rose to the occasion. Here he was needed to comfort me. Of course he expected that I was going to get his clothes and drive us home but I said I needed to go to ER about my injuries as Nurse Cindy started to fill out an accident report. I was sent to that same Emergency Room where hubby had been the day before. My pain had subsided by the time I got to ER and I decided to not pursue being examined in ER—possibly a prideful decision. Fortunately (better GOD’s grace than MY wisdom) I was just bruised as far as I can tell. My knee and elbow have abrasions and at this point the shoulder pain is gone. My pharmacist at Super Discount Pharmacy said to keep the abrasions’ uncovered and use Neosporin Ointment.

About 5:30 Monday night hubby came home and was wheeled in the front door by neighbor Kenny. Hubby headed for his spot in the family room by his DVD collection. We wheeled that collection out of the way so that the walker could be used. Soon Tom from Westcoast Brace and Limb was at our door to fit hubby with the brace he has been wearing on his injured knee. New items in our life: a wheel chair, walker (we have two now) and a knee brace.

Tuesday Jake came over and Sally and I attended a wonderful session with Dr. Aryn Harrison at our monthly Alzheimer’s Association meeting while Kenny stayed with the Alzheimer’s husbands.

So much help. Tuesday my main computer had a MAJOR virus and Dave from church is now working on it. I am so blessed to have all of this help. Sally and Jake’s son installed the moveable shower head for hubby to use as he sits in the shower.  The Interim Health Care have been at the house to rehabilitate my husband—three people today. Nurse Tammy, Occupational Therapist Sam and Physical Therapist Tarissa. Saturday Wayne again will mow our lawn. Thursday they are sending a social worker.  He has many adjustments so he can remain in our home and strengthen his leg, but he is on his way.

I have been remembering the lesson. BE WITH HUBBY. Fortunately there will be other people to help him exercise and take a shower sitting down. I won’t have to appear like the boss to him and we can just be buddies for however long the LORD wills.

--Carol from her Notebook computer by her husband’s side

(Corrected after first posted with pictures added when home computer was restored.)

Handling Clutter: Beginning on the Den



Sewing projects just piled on pub table



Laundry to fold and clutter on pool table

My lifetime of organizational disasters come home to roost. These two photos are not the half of it. I more often than not do not systematically solve paper clutter, sewing, and laundry. Many times hubby picks up on a clue and folds laundry left on the pool table--what I have read is a great task for Alzheimer's loved ones. But this pool table mess is so unsightly and how I would love for us to uncover it and to use that pool table more often.

But I will get there with Clark's two-step sort routine. Mindy Starns Clark points out in The House That Cleans Itself that vertical files do not work. They are not efficient. I even have a set of vertical files set up by the paper shredded.

When I married my current husband in 2000 I had three four drawer files and one two drawer file. He said no to all but one four drawer file coming into our home. I remember sitting in storage in Tampa when I first moved here to marry my husband and getting rid of 3/4 of my papers then, or putting some of the old file contents in boxes instead of files; we donated those empty file cabinets. Hubby was correct and he did a marvelous job of filing papers until the Alzheimer's came and I had to take care of paper clutter of both of us. Still I have always had too much paper clutter and not just from mail. Blame it on broad interests, current counseling degree course work, writing and teaching perhaps. More on that two-step sort with later post after I have applied the system.

Time for Mrs. Clark's wisdom. Mrs. Clark says use temporary horizontal files. You use this for her two-step sort and at the time she wrote this book she had purchased a jelly rack/donut rack from a restaurant supply store. I saw a horizontal sorter in a classroom Monday when I substituted (photo at left below). I should have left a note for the teacher complimenting her on this great cart at the left. I searched my heart about all the "organizing" (really cluttering) I do on the pool table, the dining room table and elsewhere throughout the whole house. A temporary horizontal organizer would work. I found one for about $70 at Office Depot below at the right below.

Hubby was right again. Alzheimer's does not take wisdom and humor away from him!  After he shopped with me Monday after school he quipped, "And where will you put this cart!"

"In the den for sorting papers," was my reply.  Furniture will have to leave the den for me to use this 10-Drawer Mobile Cart Organizer from Office Depot. I have an idea what needs to leave. I also have an idea for rearranging the den so that I have a two-step sorting station.

Organize it for filing

Organizer from Office Depot in Box

Cell phone problems. After finding and buying this organizer in the box before the bookcase above right, we went to dinner. Getting back in the car after a wonderful dinner (not a careful Weight Watcher menu though),  I dropped my five year old cell phone on the concrete. Now Mrs. Clark had advised:

Compile a list of your most frequently called numbers in a Rolodex, address book, or notebook (p. 127).

I had not done that for all my cell numbers yet and this cell phone was broken beyond repair with contact cell numbers all destroyed as well. Too late for me to heed her warning.

Tuesday I got a new phone, well not just any new cell phone--an iPhone 4S since I was due for an upgrade at Sprint. Regularly VERY expensive, my upgrade cost was $106.99 plus I traded in old phones (found after hubby lost his and needed a new one) and got an Otterbox cover for it so IT won't break when dropped as I five-year-old one had.  (Of course the new iPhone 5 would have been much more expensive.) With my carpel tunnel hands I can speak a person's name to call them instead of use my fingers.  Now I am not putting Pinterest App on that phone yet, but I did put a PrayerMate App there, that had been lingering unused on my iPod in iTunes and I put the Facebook App.  Not putting the e-mail there yet. We need SOME discipline and boundaries in my life.

Short-term memory. Short-term memory caused my husband to leave one section of the front yard unmowed last Saturday and I am encouraging him every day to finish it.  When I leave the house, hubby has to know where I am going and when I will be back and I call him while I am gone when I get a chance. Tuesday I borrowed his cell phone. I called him when I got to the school where I was substituting as is the usual practice, and when I was on my way home. I called him saying I was going to Sprint regarding another cell phone. He expected me home at 5:00 PM, not 6:25 PM. But I did call three times to tell him WHY I would be late.

At home at 6:25 PM hubby was livid with me. "You were supposed to be home at 5:00 PM,"  he said showing me on his notes like a lawyer.

"I called you three times to say I was getting another phone at Sprint."

"No you didn't!" Probably he swore in this anger. I just let this outburst roll off my back. Later he forgot that he was angry with me, another evidence of short-term memory of his disease. I have become fairly used to these sundowning episodes and his short-term memory.

Devotional area. I would say that my Scripture reading and prayer are huge in my life as a lovegiver/caregiver for my husband. Mrs. Clark writes:

Whatever you choose to include in your devotional area, the goal is to set up a permanent grouping of items that do not get carried anywhere for any other purpose (p. 88). 

This wonderful suggestion hit me hard. I have been using Daily Audio Bible for maybe five years, listening to Brian Hardin read through the whole Bible each year on iTunes usually at my computer in the den and getting distracted by e-mail, Pinterest, or blogs while listening to the Bible and "multi-tasking"!  Mrs. Clark calls such distractions "rabbit trails" and asks you to write down your rabbit trails in your notebook. One year I typed up my Scripture highlights to counteract this tendency. Or, I would listen to the daily Scripture on my iPod in the car with the car's speaker system. If it was Friday, I knew that this was the day I pray for Social Media friends, for example, and often during that day. But my devotional time was not "set apart" time--often multi-tasking time.

App for iPhones

Picking up on Mrs. Clark's suggestion my new devotional area is now in the family room. I have assembled materials there and can listen on the iPhone without that computer. No multi-tasking. The PrayerMate App can also be used in my new devotional area. This station is my new way to start the day before hubby gets up.

Do you have a clutter problem?

Do you have "rabbit trail" distractions?
What are they? 

Do you have a devotional station?

Saga Twenty-Five

Jake and Sally's Camper at the left

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


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


"Get in the car," he orders me.


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


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


Mirror and Place for Sunscreen, Etc.

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


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

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

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

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

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

Trust the Spirit, look to the Scriptures,

and do what the Spirit says to do.

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

Lock Going Out to the Lake

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

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

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

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

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

New Adventures for This Popup Camper

Then I remember that a wonderful family of five in my church might want our popup--the wife had once said to me that if we ever wanted to get rid of it, they might be interested. I talk to the couple and I tell them all about it. This family is very resourceful and I know they can deal with the popup camper's quirks. The family said yes and  two delightful daughters helped settle it on their property which was on our way home to Plant City. 

We arrive home safely driving through rain without the popup. Exhausted, nonetheless I substitute teach on Wednesday and hubby actually mows the front yard without my pressuring him.

Wednesday night we go over to Sally and Jake's to get our stuff and we go to dinner at Weight Watcher friendly Applebee's and reminisce about the weekend, with Jake and DH remembering some of the weekend. Both did remember the airboat ride. Hubby pretends sometimes to remember recent events while Jake often looks mystified. Alzheimer's is different for everyone, but as Jake's T-shirt says, old guys rule. 

Without Jake, we couldn't have camped.



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

Sundowning and Obsessions

I have been noticing that about Sundown time we run into snags here. When life isn't comfortable or is confusing, DH gets agitated. Jake does also.

Friday night we went out to dinner with Sally and Jake. The four of us were at a round table and Jake was concerned we weren't sitting correctly at the table. Sally was sitting closer to me so we could chat. Jake was obsessed with how we sat. Jake wouldn't let his obsession go until we had squared off the whole table. Jake went up to pay their bill and I went up to pay our bill. Sally meanwhile at the round table asked my husband if he was upset about not driving anymore like Jake. He told her that he knew it was best he didn't drive anymore. Jake and DH have different obsessions.

One sundowning episode when DH didn't like the restaurant, he said to me, If you take me here again, I will divorce you and If you take me here again I will shoot you. I know it is the disease and sundowntime that I have written about earlier on this blog. I bought this up days later and DH says he was just teasing or that maybe I was making things up. They are in a different world at sundown--an Alzheimer's world.

I worked six days last week. When I got home on Saturday, it was my husband's time to obsess--late afternoon. I told him that while I taught, I had the car's oil changed. I reported to him that the mechanic had actually found the source of the oil leak, thinking that he would be glad to know this news. Not so.

"So why didn't you get it fixed?" he wanted to know.

"Because I only found out about the location of the leak when the mechanic picked me up," was my reply. It soon became clear to me that hubby wasn't processing this information and he decided late afternoon of a Saturday that we needed to go out to get the car fixed. Even though I was tired and wanted to stay home, we left on an adventure. With obsessions, you just have to see where the Alzheimer's spouse is taking you. An obsessed person doesn't think about making a phone call to get the appointment. DH apparently needed to get out of the house.

The garage door closer that is kept in our car needed a battery and DH has been closing it with a switch in the garage when I left all week. Confusing to DH now. On our trip to find a late Saturday car repair I said to hubby: "I will drive the car out of the garage and pick you up at the front door." This didn't make sense to him as he kept forgetting that he couldn't get in the car with me and that I couldn't use the garage door closer in the car to close the door. He was mad. It was confusing.

Now our Plant City Firestone has shut down and we drove to nearby Sefner for their Firestone--our new mechanics to keep our Expedition running. On the way there, DH forgot, of course,  where we were going. When we got to our new mechanics, I arranged for an appointment for next week. Then we went on to Wal-Mart to get several items including the small battery for the garage door opener and to have DH's watch set ahead an hour.

I reflect that this stage of Alzheimer's is much like Autism. Individuals with both diseases have short-term memory problems and tend to obsess about issues. In both situations distraction and reminders help. So by the time we got to Firestone, the obsessive purpose for the trip was no longer an issue. Hubby was distracted by the enjoyable ride in the country past strawberry fields and farm houses, remarking that he doesn't get out much and doesn't remember the road we were traveling on. He also remarked that it is good that he doesn't drive anymore.

Rather than get upset, I, the caregiver, just go with the flow. I just need to enjoy my days with hubby and find the humor. The other night when DH was praying, he told the LORD that whatever that thought was that he had, the LORD knew. The LORD does know all about our Alzheimer's journey, the obsessions and all. Thank you, LORD!

Saga Nine

Ours on Left and Sally and Jake's on Right

We used to own a popup camper, but my husband sold it a year and a half ago. I was sad about giving it up, but accepted this as part of life.

Our friends Sally and Jake go camping. They upgraded from their popup camper and recently sold us their old popup camper on the left. They sold it to us verrrrrry inexpensively, which meant that we would put new tires on it and have it looked over for repair and safety. Repair could have meant new canvas, but I devised a plan so we didn't have to have new canvas--combination of my sewing and using fabric adhesive.

Was this purchase a risk? While deciding on this purchase, I realized worse case it could sit in our backyard on our cement area.  I called Dolores about having this much fun while our husbands have Alzheimer's and she encouraged us to go for it while we can. Also, Jake knows how to operate the popup since he once owned it. We will go camping with them at first.

DH, proud of this driving skills,  carefully drove the popup to a place that would work on it. I also worked on the canvas there--my only experience ever working where mechanics work. Proud of my work I went home to  get DH to bring him to see how well I thought I was doing repairing the canvas. When he got there,  DH got mad at me, using a lot of swear words and saying why didn't we just have professionals do the job. I stayed calm and explained we really couldn't afford that expense. That night he forgot that he had been so mad at me. This is the for better and for worse part of marriage and because my husband has mixed dementias this behavior is to be expected, especially at sundown time which it had been during his outburst.

We have been busy outfitting the popup--new camping chairs, what will go in each drawer, etc. We were at Camping World and DH's back hurt him and he said he was going to go to our car. I said OK and pointed him in the direction of the car.  Unfortunately he got lost and I had left my cell phone in the car. When I made the purchases, I went to the car. No husband. Retrieving my cell phone I called his cell and he was mad at me--sundown time. Life is so frustrating for him at times. We met at the entrance to Camping World and then walked to the car. Several hours later he could not recall his getting lost.

Things turn out to be the spouse's fault when the other has Alzheimer's. I realized that my husband needs me with him at all times if he is not at home. (He still is happy to stay home watching movies by himself while I work part-time or do other errands. Because of that crash in December there is no extra car now for him to drive while I am gone.)

Time doesn't make sense to my husband. He thinks the shop has had our new-to-us camper for a long time whereas it has hardly been a week. He takes notes about each day on a notepad he keeps on the coffee table with all his DVDs. Even so his notes don't always make sense to him.

Hopefully we will have opportunities beginning next month to enjoy camping adventures before his health declines.  And then Jake and DH can enjoy telling each other the same stories over and over that each forgets. Sally and I will smile when they do and also enjoy having our own conversations.

Thank you, LORD, for the camper
and for our friends!

Saga Two

This week James finished the recessed lighting in the family room where my husband watches so many old movies. That bright light is essential to help with Syndowner's. The picture at the left doesn't do justice to the real change in lighting in that room.



"This is the last time you take me to a doctor," proclaimed DH, as he drove us to an endocrinologist this week. Yes he can drive now. I was glad because while he drove I was writing down all his prescriptions, Centrum Silver, Flaxseed Oil, Vitamin B12 and the Ecotrin full strength aspirin he now takes instead of expensive Plavix. I didn't want to cart all those bottles in to the doctor.

We didn't know why he needed to see the endocrinologist, but found out why when we got to Watson Clinic in Lakeland. His calcium levels were elevated and that could mean surgery on a gland or kidney stones.  He collected urine for 24 hours and did a great job of remembering to do this even while I was gone. Shortly he will take a bone density test also to see if calcium is not getting to his bones and if he has thin bones.

A researcher interviewied me about coconut oil and the benefit to my husband. I pointed out DH's passing his driver's test at an ALZ clinic and also the fact that Byrd Institute said that they didn't think he should be dressing himself now based on his MRI. Yes, indeed, coconut oil is helping DH.

Sally, Jake, DH and I traveled to Disney's Epcot in Orlando this week. In celebration of passing of the driving test I actually enjoyed my husband driving the four of us to Orlando.  I wanted to drive his SUV, but he said it makes him feel like a man to be the driver. He really is a safe driver. On the return trip, however, DH was happy to have me drive. Again we got in free due to the generosity of some friends. Jake and DH got better acquainted during the day as did Sally and I.

How wonderful it is for me to have Sally to share the journey of husbands having Alzheimer's. We commented that the men may be about the same stage of Alzheimer's, although we do know that this disease takes different forms with different men. We also noted that they both husband's need organizational skills of their wives to complete projects--my husband to weed and Jake to paint a fence. During the day at Epcot we had plenty of opportunity to observe the interaction of our husbands who are enjoying forming a friendship as are Sally and I. Sally had read my book and so knows all about me and I was able to ask her getting-acquainted questions also. What a gift from the LORD this couple relationship is turning out to be!

Sundowner's Syndrome

I am working on the Alzheimer’s environment that will work for both of us. I have been blogging about simplifying our home—de-cluttering and making order—a place for everything and everything in its place—and less junk, junk-bunkers and stuff. Things need to be where my husband expects them to be. The garage sale is coming.

There is more to this needed environment than just order, however. Light is needed. I read that light is also important for the Alzheimer’s home.  According to Paul Raia, vice president for clinical services for the Alzheimer's Association of Massachusetts and New Hampshire,

“Alzheimer's patients at mid-stage of the disease need 50 percent more light to see at the same level .of acuity because their retinal function goes awry.”

See Link for above quote. Also Bob in the ALZ Reading room wrote Link .

Yesterday going into the late afternoon DH was a little agitated about a phone call. We went to the Hillsborough County Fair and he calmed down. We were outside and he had plenty of light.

One day last week at sundown time I called my husband to say I would be home late. When I got home, hubby was furious with me. He said he didn’t trust me and if I ever did this again (come later than expected), he would divorce me! I soon suspected my loving husband was having a sundown meltdown in a dimly lit room. “How would you do without me?” I asked sticking to my guns that I had indeed called him to tell him I would be late. Alzheimer’s caregiver training has made me almost innocuous to such charges.

The next day I asked him if he would ever divorce me and the answer was “No, of course not.” He had no recollection of the previous night. This Saturday morning my sweet husband is again watching "Fireproof", the DVD about saving a marriage. We both have been known to cry near the end of it.

Since DH is very conscious of having too many lights on in the home to save our electrical bill, I was not sure how to approach him about needing more light in the family room where he watches TV much of the day. However several years ago we had an electrician install three ceiling lights over the family room couch so we would not need lamps to supplement the ceiling light/fan which is usually not on. Now DH was using only one dim middle light while watching movies because two of those lights were burnt out and they hadn’t been replaced—a difficult job to replace because of the covering. (My sister-in-law says that she puts smaller bulbs in her ceiling lights so she doesn’t have to put that problematic covering back.) Too little light is what DH had—ready for sundowner’s effect.

So this week I purchased three new 5-year ENERGY SMART GE lights for track and recessed lighting to put up. I am keeping the receipt for five years. Packaging says it will save us $120.  Ironically it was near the end of the day (sundowner’s time) and my husband got the ladder out of the garage to install two lights which he did—and I wanted three all three lights installed. The light bulb cover was difficult to install after two new lights were put in. The middle light which still worked was not as bright and I told him we needed to replace that middle light also. (You don't see that light on now in the above picture.) DH got angry with me. I kept repeating my reasoning to him:

1. The lights would match in brightness;
2. They would all have the same five year warranty.
3. I did not tell him the third reason.When he turns on this unit, it would help with his suspected Sundowner’s Syndrome. There would be three bright lights.

We started to argue about replacing the middle light—“Please do it for me” I begged. Reluctantly he unscrewed the light in the middle, but gave up totally frustrated as part of the bulb got stuck in the socket. I said we would finish this another day, seeing we would get nowhere and that the chivalrous man he is, he would not accept my trying to get on the ladder to do this. Later while he was sleeping I tried but couldn’t complete the task. I will get our carpenter James to put in the center light and fix those coverings. I already called James to tell him about Sundowner's, etc. Since hubby spends a lot of his day listening to movies in this location, his phone is nearby, a bright room might means less sundowner’s meltdowns.

So what is Sundowner’s Syndrome? This definition link provides a definition:

Sundowner’s Syndrome is the name given to an ailment that causes symptoms of confusion after “sundown.” These symptoms appear in people who suffer from Alzheimer’s Disease or other forms of dementia. Not all patients who suffer from dementia or Alzheimer’s exhibit Sundowner’s symptoms, however. Conversely, some people exhibit symptoms of dementia all day which grow worse in the late afternoon and evening, while others may exhibit no symptoms at all until the sun goes down. Sundowner’s Syndrome largely remains a mystery to medical science, although there are several theories about why these symptoms begin at night. More and more studies are being conducted to try to determine the exact cause. In the meantime, some doctors believe it’s an accumulation of all of the sensory stimulation from the day which begins to overwhelm and cause stress. Some speculate that Sundowner’s Syndrome is caused by hormonal imbalances that occur at night. Still others believe that the onset of symptoms at night is due to simple fatigue, while some believe it has to do with the anxiety caused by the inability to see as well in the dark.

How can Sundowner’s Syndrome be treated? With good light and the training of me, the caregiver. Linda from the blog Early Onset (links at the right) wrote me about Sundowner's and my dealing with it:

I hope you find the following information helpful. It is "how to respond to behavior" from my Alzheimer's In Service program for health care workers:

• Remain flexible, patient, and calm.
• Respond to the emotion, not the behavior.
• Don’t argue or try to convince.
• Don’t take the behavior personally.

Last night I heeded her advice. Linda also said to consult the doctor about medicine.

When this third middle ceiling light is installed I will report back here. To be continued . . .

Feeling Normal

 “You can only perceive real beauty in a person

as they get older.” ~~ Anouk Aimee

I asked my husband if he enjoys retirement. He said yes. I love him so much. He has great integrity and character. He doesn't let things bother him that might bother me.  Thank you, Lord, for this wonderful husband.

I asked him if he knew he had dementia or Alzheimer's. He said he feels functionally normal. Are you in a fog? No. My husband is in denial. Early on when I started this blog I was in denial. I had blind faith that coconut oil would help. Yes it has helped as has his Alzheimer's medicine. He would be so much worse off it he had not had that medicine and oil according to the USF Byrd Alzheimer's Institute.

Every once in a while he asks me a question such as is he is 72. I say yes. See, I am not losing my memory, he retorts. I think this depends on the time of the day, and he possibly has Sundowner's Syndrome--but more on that later. He does not remember all the things I tell him verbally. If I write it down, he might not remember to read that note. Everyone forgets as he gets older--this is normal, he says.  

He wears that medical alert bracelet that has "memory" stamped on the other side of it--keeps it on in the shower, but remembers to take off his watch before his shower. His watch tells him the date--October 12 and the day of the week, Tuesday. The calendar tells him where I am and he crosses off the date when I come home. He takes his blood pressure regularly and keeps asking me what is normal. He records his blood pressure. He often makes the bed--his side and even mine.

We talk about his driving test tomorrow. I will sue if they don't let me drive, he says. I let him drive last night when we went to Lakeland to my publishers to pick up more books for the book signing in November. I had him drive this morning also--both times with me in the car. Like a great husband and companion he wants to be with me--doing anything.

  

DH  vacuums, cleans the carpet and mows the grass--all things he has done the ten years we have been married. He has his same humor. He blows the paper cover off the straw at me as he prepares to drink his ice tea. A year ago he made valuable suggestion on my book before it was published. He loves to watch old movies. He only reads to read a hymn and the last several months we sit down in church usually rather than stand when we sing the hymn. We hear Scripture read at home or in the car. He prays beautiful prayers, or the simple table grace prayer that I can recite from memory. Of course he feels normal. He has a loving wife and an affectionate dog and a roof over his head.

Rebellion. He apparently went down to Block Buster Video recently and bought some 99 cent movies that I added to his list of movies--not good choices, but he felt free to buy them with the little cash he carries in his wallet. Wasn't supposed to drive until we know the results of that test tomorrow and the note in his car says that. I feel for him. I let him drive last night and this morning with me in the car. I want him to feel normal--that he is OK. Don't we all want our loved ones to feel OK?!

I am so glad he is happy.

To be continued. . .

About five hours later. How I had looked forward to this afternoon!  Jake and DH were to play pool and chat while Sally and I went to the Alzheimer's support group and I was going to report on that here. However when Jake and Sally came over, suddenly I had been in our master bedroom barfing.  My blouse was wet, I was hot, and I continued to vomit. I had no presence of mind to call and cancel. They chatted for a while in the family room and took a rain check on our date.

About an hour later DH was instructed to bring my purse with my cell phone. I used my cell phone to get the number to the pet groomers so DH could call to see if  our dog was ready at the groomers. The front door closed as I heard DH say he was taking his car to get our dog. Soon he was back in the house looking for the global navigational device plugged into his computer. He found the address on the Garmin GNP, punched it in and went to rescue our dog. When they returned I found hubby trying to put his cell phone into the GNP chord by his computer. I reminded him that his cell phone recharger was in our bedroom and that "Miss Garmin" needed to be plugged in at his computer.

I am starting to feel normal.