Beginning of Stage Six

Even in laughter the 

heart may sorrow,

And the end of mirth 

may be grief.

Proverbs 14:13

I started noticing changes lately. Those outings we had in April, may be the last ones we have and that thought was in the back of my mind when we went to a show and to a party. Some of our usual routines are not working. I am showing signs of being stressed out by change (not sleeping as well) and hubby is definitely changing. It may not just be a UTI--my idea earlier in the week.  Rather hubby may be headed into stage 6 of dementia. Oh my goodness! I did not want this to happen. I am trying to have a normal week. 

Enroe from my church helped me on Tuesday, his day off and my day off from substituting. After I dropped off the GMC to have the air bag replaced for free because it was recalled, Enroe  drove me around all morning in his vehicle. We went to Social Security so I could order a replacement SS Card. We went to my husband's doctor's office to get a prescription for his suspected UTI, and we went to one bank. Then Enroe drove me to a Christian Women's Club lunch where I sat with my friend Sally. Ordinarily both of our husbands would be at the Senior Center, but my husband was in no shape to go. Jake has been at the Senior Center enough with my husband so Sally can leave him without a problem. Then Sally drove me to a bank and then to get my car. I went on to Lakeland Toyota to find out about a gap refund since I have refinanced the GMC. Ordinarily Kenny would drive me on such errands, but he is out of town. Tuesday I had to do it all and Tuesday night it was so hard to deal with hubby! 

With Kenny gone, I have been fixing hubby a peanut butter and jelly sandwich on a croissant for lunch when I work. He loves it. My plan has been to not substitute on Tuesdays this May. I told myself it's just a UTI and he will get better. 

What do they say about the best laid plans!!!

Wednesday morning I woke up ready to give hubby his pills, get him dressed and wheel him in his wheel chair out by the TV. No way did this work as it usually does and I had to call the school to say I would be late. I just could not hurry hubby up. He had only had his second antibiotic pill for the UTI. To top off everything, the sheets and mattress pad were wet!  I decided to not substitute for a few days, maybe until Kenny is back in town. Yes, we need the money, but the LORD has always provided and He can do it again. 

What is happening? 

1. I have to stop my busyness because we may be going into stage 6 of Alzheimer's which is described HERE. I cannot keep up my pace. 
2. We are using a wheel chair and a walker. Last year hubby would have objected. Recently this is the way he is getting around and he is accepting it. The chiropractor can only do so much to restore his ability to walk now. He hobbles. This is stage six, folks. 
3. Urinary incontinence is here. At first hubby did not like these briefs. I wanted to mail back the adult diapers to Rite-Aid and waited for directions for that mailing that never came. Now I can use them at night and will try them tonight. This is stage six, folks. 
4. I AM BLIND! I can no longer be THAT blind to blame his behavior ALL on a UTI. 

Before I confirm stage six, which is highly suspect, I will see someone at the Alzheimer's Association tomorrow morning. We will see a neurologist in June, if not before so we can see if the Exelon Patch and Namenda will still need to be taken. What other meds does he need? I wonder.  

Sad update:  Kenny's mom, Margaret, has stage four cancer. She is in Orlando recovering from surgery that may not have gotten all the cancer. She will have chemo. Kenny told me she asked about me. She has been such a wonderful friend and fine Christian believer. I would choose her as a sister any day if I could. Her recovery is not guaranteed, but we have talked about our guaranteed future in heaven with our LORD. 

I am just not ready for all of this! 

Carol

Back to Hospital



Cranberries Are Good for UTIs


I have a different husband than I had last Sunday, but I have to remember that the prognosis is good.

Saturday hubby was napping in the morning, hardly ate lunch, napping in the afternoon, hardly ate dinner. Hubby was weak, his pulse fast, and he was going down hill.

At 8:30 pm Saturday night I contacted Kenny and asked him to help me get hubby in bed. Bur rather than just get him in bed Kenny gently urged that I take hubby back to emergency and helped me get hubby into the car so I could drive him there. Kenny has seen these problems before (I will interview him in another post). Hubby went through similar tests for the next hours until the culprit was discovered about 11:30 as a UTI or uninary tract infection.

For several years I have been following the Bob DeMarco's Alzheimer's Reading Room which often warns of a UTI, or a uninary tract infection. Many times older people get it. Carole Larkin herself has written here about it and has Bob when his mother would get it. They are treated with antibiotics such Bactrim, Septra, Larotid, Moxatag, Furadantin, Macrodantin, Ampicillin, Cipro, and Levaquin. Hubby was prescribed Macrobid 100 mg. oral capsule 100 mg twice a day. Another pill to get down him!

More women get it than men do but if a patient has diabetes it is common. My husband has diabetes and he is less ability to say how he feels.

I looked up information about it and discovered that this may be a continual problem. That National Kidney and Urologic Disease web site [http://kidney.niddk.nih.gov/kudiseases/pubs/utiadult/#tract] said:

Men are less likely than women to have a first UTI. But once a man has a UTI, he is likely to have another because bacteria can hide deep inside prostate tissue. Anyone who has diabetes or a problem that makes it hard to urinate may have repeat infections. . . .Most UTIs are not serious, but some infections can lead to serious problems, such as kidney infections. Chronic kidney infections—infections that recur or last a long time—can cause permanent damage, including kidney scars, poor kidney function, high blood pressure, and other problems. Some acute kidney infections—infections that develop suddenly—can be life threatening, especially if the bacteria enter the bloodstream, a condition called septicemia.

Something was mentioned in the emergency room Tuesday night about hubby's kidney, but I did not catch what they were saying. I am concerned and of course will follow up with a doctor visit.
MedicineNet.com said:

There can be many complications of urinary tract infections, including dehydration, sepsis, kidney failure, and death. If treated early and adequately, the prognosis is good for most patients with a UTI.

Meanwhile today I am just plain tired and discouraged. Had wanted to go to church or just to Skype church, but I missed the call for Skype and went back to sleep. Hubby needs to shower and shave if we go anywhere and he is motivated for nothing.  He will get better. Going to take him to the doctor early in the week--if I can get him there--motivated to get in the car.

Me? I don't know what to do with me. Huge test of faith again. "Do the next thing," someone once said. I am trying to decide what that might be.

Hubby in Hospital--Part Two

DH:  When can I get out?

Me: When the doctor says so.
DH: Where am I now?
Me: You are at our wonderful Plant City South Florida Baptist Hospital.
DH: I am going to leave in my hospital gown.
Me: No you are not. We both had to come here because we were bad. I swallowed your pills by accident in December. I was a bad girl and I had to come here. You did not take your pills on Tuesday or eat all day and you were a bad boy so you came here. [See post here when I took hubby's pills.] I needed to know if you had had a stroke also. 

_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Margaret Thatcher had stroke this past week. Hubby had been able to stick out his tongue, but he was very confused Tuesday afternoon. I couldn't chance it and as I wrote in Post One, I drove him to the emergency room where he was also checked for a urinary infection. 

Now doctors say a bystander can recognize a stroke by asking three simple questions:
S *Ask the individual to SMILE.
T *Ask the person to TALK and SPEAK A SIMPLE SENTENCE.
R *Ask him or her to RAISE BOTH ARMS.
If he or she has trouble with ANY ONE of these tasks, call emergency number immediately and describe the symptoms to the dispatcher.
New Sign of a Stroke -------- Stick out Your Tongue

_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

That was Tuesday night and Wednesday the more food we got down hubby the better he walked, went to the bathroom, etc. But still he did not have his "walking papers". His socks were red, rather than green--the hospital code for walkers and non-walkers.


DH: Carol, you live in never-never land. I can leave now. [Techically this is true, but not wise for him.]
Me: They have to release you from the hospital.  
DH: I can walk out of here.  
Me: Right! Walk out in your hospital gown and they take you right to the funny farm!  

I watched carefully the nurse as she assisted him walk to the room bathroom and instructed him how to get back into bed. I quizzed the nurse on taking pills with the apple sauce. You don't have to open the capsules or crush the meds. You just put them in the apple sauce and they soften that way for several minutes and then he eats the apple sauce with knowledge that he is also being a good boy taking his pills.

From the Alzheimer's support group one gentleman sent me this email I read from my notebook computer on Wednesday:

So sorry to read about your Hubby. I didn't look around when you left to see who came. That must have been horrible for him sitting there all day. Strange someone did not pick up on what was happening. I sure hope things work out for him to the good. I will read the blog to stay up-dated. You take care of yourself too, Carol.

I also wondered why the Senior Center had not called me Tuesday.

Yesterday in the hospital I was in touch with family and friends on my iPhone and notebook computer. I read email on my iPhone. I read blogs on my small computer. I played Words With Friends and updated those people on my husband with the Words With Friends chat box. I texted family and friends. Hubby kept wanting to know when he could go home and kept talking about our dog. He had no idea about all my technology that kept me occupied when we weren't talking and I was answering the same questions over and over again.

Finally near 6 pm Wednesday night the neurologist came. This specialist asked my husband questions such as what was the year, what was the season and where he was. I am on planet earth, he said.  He flunked all answers. The neurologist said he would review the chart and see when he could be released.

They have had my body long enough, hubby said, but he would not be released Wednesday night and I headed home.

When I got home I put the port-a-potty thing below we had in the attic from hubby's heart attack in 2004 on his bathroom toilet, now making our home even more Alzheimer's ready.


Handles for getting up and down.
He might as well get used to this.  

During the day Wednesday I was so pleased to see that a family friend had put in a gate to connect our property and our back yard neighbor's property for new help for my husband. This gentleman also fixed another gate I had bent backing up our gas guzzler some time ago. Such a blessing and he will also mow our 7/10 acre so I don't have to nag my husband about the lawn or have him accept a woman (me) mowing a lawn.

This morning. Our dog objected to my getting ready to leaving him again, but I told the bright dog I am going to see "Daddy" and he stopped barking and I head again for the hospital. I had seen that Dallas, TX Geriatric Care Manager Carole Larkin had posted a comment below on Part One of Hubby in Hospital on this blog.  I took Carole Larkin's professional advice and checked on my husband's admission to the hospital when I got there this morning. He had been admitted.I got to see his primary care physician briefly. He would go home.

When I got to his hospital room he was eating his food without coaching! Perhaps he had learned his lesson which I would repeat again and again now also explaining why he would have a volunteer caregiver Kenny visiting my husband when I was working. Hospital staff wheeled hubby to our car and we left the hospital.

Kenny came over to our house this afternoon and we went over procedures. Kenny will use that new gate on days I leave the house to see that my husband gets up, has his pills in his apple sauce, has breakfast and has lunch and has enough water and other liquids.

While Kenny was here our friends Sally and Jake came over and brought us dinner and Kenny was able to meet Jake who may stop by sometimes while Sally runs an errand! Jake was here last Saturday when I taught all day.

Multiple blessings. I have had help for fences, for lawn mowing, for advice from the nurse and from Carole Larkin and now have an magnanimous volunteer such as neighbor Kenny. Thanks for dinner, Sally and Jake also--delicious salad from Bob Evans.

I just think this whole experience has shown

wonderful answers to prayer

and thank all of you who have been

praying and helping.

Hubby in Hospital--Part One

Yesterday morning I picked up Jake and drove Jake and hubby to the Senior Center where they spend Tuesdays. Jake finished his breakfast in the car but hubby still had his breakfast and had not swallowed his pills in the car. With the air of a staff sergeant I brought hubby's breakfast and morning pills into the Senior Center. Later in the day I would attend the 2 pm monthly Alzheimer's Association Support Group at First Baptist and either Sally or I would pick up the husbands.

Sally took care of a sick grandchild yesterday and did not go to the support group. She picked up our husbands about 3 pm. She came to the support group with the grandchild leaving the two husbands in her car and said that my hubby was not himself. He had not taken his pills, not eaten his breakfast nor eaten the Senior Center lunch. He had sat at the center all day. Jake was very concerned as Sally was.

I left the meeting and Sally drove hubby to where our car was parked. It took some coaching to get hubby into our car. When we got home I decided to take him to the front of the house rather than through the garage where with all the junk there and the step up to the family room. I figured easy access to the front door and no step up was the best route to his easy spot by the big screen TV.

However, hubby was not getting out of the car. I feared the worse--a stroke, although he could stick out his tongue. I called his primary care physician's office and proceeded to the emergency room at the hospital where I had gone myself last December in an ambulance.  I could get him there quickly myself without waiting for an ambulance and having to pay some of the ambulance cost that insurance doesn't cover.

After the four plus hours, the emergency room staff ruled out a urinary tract infection or a stroke. I requested  food for him and finally some came about 8:30 PM. He ate only a little--the only food all day. He had some apple sauce and a little bit of turkey, and a taste of jello.

The decision was made to admit him for further observation. I drove home last night so ready to cry. With melatonin from the health food store I was able to get maybe six hours of sleep and I came back to the hospital with this notebook computer where I am typing now and with my iPhone and its charger for contact with people outside the hospital. So glad you can use those devices in the hospital now.

The nurse came in this morning to give hubby his medicine.

Nurse: Give me your name and your date of birth.

Hubby had some trouble with these two instructions. I explained to the nurse that she asked him two questions and he only responds to one idea at a time.

"By law you have to give the date of birth when I give you your medicine," my husband's nurse said.

He was able to give his name and date of birth finally with one question at a time. 


Me to the nurse: What if they have dementia and can't give you their date of birth?

Nurse: I keep going until they can answer something-- maybe they can give the year.

Me: He can't give you that. (He will just cover himself by saying that he doesn't bother with those details because he can check a calendar for the year.)

She proceeded to give him his medicine in apple sauce! I have to try that!

APPLE SAUCE!

The answer for the Pill Pusher me!

In order to be released, my husband needs to see the neurologist. Also, he is really shakey on his feet.



pottery dog, apple sauce



Perhaps hubby is going into a further stage of Alzheimer's. Out of ignorance or bliss I considered my husband in the first stage of Alzheimer's. Stages are different for everyone. Last year a nurse and reporter had contacted me to use hubby as proof of coconut oil. The reporter said I wasn't giving him enough, however, but whatever I have given him I feel has kept him fairly functional for a long time (since December of 2008).

Hubby kept asking: When was the last time we were home? When can I leave this jail? He told the nurse, I have seen you for two weeks. (He has no concept of time now.) I bring a ceramic dog to the hospital and he has this nicknack on his chest, reminding him of our dog.

I am sleepy here at the hospital. Going in search of coffee or caffeine. Thanks for your prayers, folks.

Valentine's Day Cards

♥     ♥    ♥     ♥

Tuesday was Plant City Senior Center day as usual for our husbands. Hubby and I picked up Sally and Jake in our gas guzzler and drove them to the center. Then Sally and I had errands. We ate lunch (a quiche and salad) at Fresco in downtown Lakeland. We headed for our monthly Alzheimer's Association support group in Plant City.

Jake called Sally on her cell phone and we left the meeting to pick up our husband's at the Senior Center. We are always so surprised what they do there that we might not have thought of. Jake enjoyed a jigsaw puzzle and I think Sally may get him some from a dollar store.

The next stop was the Hallmark store and two husbands went inside to buy their cards while Sally and I went in other stores. I bet their conversation in that store was hilarious.

My card to hubby says:

Making good memories in every simple moment,

Laughing at life and at ourselves,

Taking care of each other's heart

I love the years we've shared and I love you.

My photo album is not done, but hubby was very pleased I am making it. There just doesn't seem to be enough hours in the day.

Hubby's card is so sweet!

For my wife with love

Though sometimes we may fuss a bit,

I know darned well it's true--

I got the world's best "BETTER HALF"

The day I married you!

75 in a 15 Zone

You are turning 75, Sweetheart, I said.

I feel good about turning 75 was his reply.

Jake is changing, he said (as if he isn't). Both men require supervision from Sally and me.

You are a great friend to Jake. I am glad you can go to the senior center with him. Hubby nodded in agreement.


Church B. D. Celebration

Thursday night we went to dinner with Sally and Jake. Then we went to Costco where I got food for hubby's b.d. celebration.  At Costco hubby sat in the dining area (if you can call it that where you eat pizza) and Jake went with Sally.

Sunday we had hubby's 75th celebration at church. It was designed to be as simple as possible. Sally brought deviled eggs, a labor-intensive dish. I cut up cheese from Costco and cut up the broccoli. I spent time on two fruit salads. It was going to be one salad, but I sort of went overboard.

The cake was purchased and when it came time for hubby to blow out the candles, someone remarked that my husband has a history with fire. He actually had second degree burns from heat when he burned trash in our back yard some years ago. So at the mention of his fire mishap, birthday boy shows off his hairless legs at the party--hairless because of that fire. 

See! No hair on my legs!

At one point I heard a five year old  at our church ask my husband what he does.

I mow the yard and watch TV was his answer.

I thought to myself that hubby is like a young person who now has to be reminded to mow the lawn, but doesn't want to give up that responsibility to others. Hubby is very much like a  teenager on some levels, but very responsible on other levels. Jake is very much like a kid wanting praise for what he does. Both men are real old-fashioned gentlemen. Both hold the door open for us and carry heavy things. Not all 15 year olds are so thoughtful. I know because I substitute for 15 year olds. It is great that our husbands don't cook--but "delegate" that task to their wives. Could be another fire if my husband cooked!  He still can use the microwave I believe, but that skill hasn't been tested recently.

Hubby has a great sense of humor. He loved the new lyrics I wrote for Toastmasters Monday night to the tune of "Winter Wonderland".  He understands about the economics of  "snow bird" retirees who winter here in Florida, and he put up with my practicing these lyrics several times and encouraged me with his laughter. Actually I had everyone at Toastmasters sing these lyrics with karaoke iPod accompaniment because my voice is not that great.

SOUTHERN WONDERLAND

At the beach sand is a glistenin’
Sea gulls honk, are you listenin’?
A beautiful sight
We’re happy tonight
Cruising in our Southern wonderland.

Here to stay are some new birds
You come South for the winter
We call you “snow birds”
And you come in herds
Escaping your Northern cold land.

When you come we have a great economy
And we also put up our Christmas tree
We say “Are you local?”
You say, “No man!”
But money does the job
When you’re in town.

Welcome here all you retirees
Spend your cash will you please!
And face unafraid
The plans that you’ve made
Cruising in our Southern wonderland.

Hubby even "gets"  some of my raps that I write for good classes when I sub. How many wives have that support from husbands too busy to notice, I wonder. How many caregivers try to have a life with their loved one and include them in what is happening? It is a form of shadowing, but hubby does many things with me--every thing but accompany me when I teach.

Senior Center Day. Today, Tuesday,  Sally brought Jake by. I loaded both husbands and our dog in the car. I played country music for the three of them from my iPod in the car. First we stopped at the vet for Ziggy's shots.

Hubby, Dog and Jake

Then I drove them both to the senior center. No trouble getting them to go through the door. I took Ziggy home and started on this post, trying to keep up with posting several times a week.

Junk Bunkers

Tomorrow is DH's official b.d. and so I had to get new tags for our car--the gas guzzler we use after my car had been totalled two years ago. Hubby still considers this car his car, although I am his driver now. Because I was substituting in the afternoon at a Plant City middle school, I tried to get the tags late morning. The line was an hour wait and I decided if I could get there before five, that's when I would purchase the tag.

So with a little time to kill,  I went into Staples. I took a picture of those "junk bunkers", those containers I am trying to get rid of, although will use some for clothes storage. After reading The House That Cleans Itself, I think so differently about them now. I used to buy these for all kinds of stuff I didn't deal with. 

Then I went on to substitute for the afternoon until almost 4:30. Meanwhile at about 3 pm Sally picked up the husbands and brought mine home. After school I was able to get the car tag. At home I had my husband put the new tag on. Suddenly the new registration was missing. It turned up in the trash can in the garage. He had forgotten this procedure of putting the registration in the glove compartment, a procedure he had done all his driving life.

What did you do at the senior center today? I asked him tonight.

Don't know.

You and Jake have a good time?

I guess so.

Doesn't this sound like trying to pump a 15-year-old for how his day went!

At This Stage Status Report

I mention short-term memory and my husband quips Who are you?

Here are some other things he says:

I think I asked you this before.

Carol? (I say yes.) Just wondering if you are kicking and breathing. (I show him I can kick. I show him I can breathe and he laughs.)

I go walking in the neighborhood with a neighbor lady and when I return he says. I forgot where you went.

Today he both acknowledged memory loss and accused me of not telling him something I know I told him.

Other news:

DH and "Jake" went to breakfast with "Sally" and me today. Then we did it! We took our husbands to the Plant City Senior Center. We went in with them and left. Sally picked them both up at 2:30. I had errands to do and in the process found a $25 file that looks like a chest to put in the master bedroom, the current room I am processing as I follow The House That Cleans Itself. This two drawer file will mean that all these boxes, bins and baskets I "hid" in the master bedroom can go.


Dog Ziggy at the bottom of mess.

Why ever did I think those baskets would work?

Great Solution

Two neighbor men helped take this file into the master bedroom. It looks like it could be bedroom furniture, but is really a file inside.  The bookcase and file will be a great asset as I finish up my counseling studies.

Many things need to be finished in this master bedroom, but I can see the light at the end of the tunnel now. I may need to jump ahead to area #5 now, the living room, because Christmas is coming.

Saga Twenty-Seven

Again this month Sally and I went to the Alzheimer's Association support group the second Tuesday while the husbands hung out at our house. Sally turned her cell phone off, but mine was on and I got several calls from the husbands during the support group wanting to know when we would be home. DH knows this is an Alzheimer's support group, but Jake, who doesn't think he has a problem, thinks this is our monthly ladies Bible study. Then the four of us had a good dinner at Longhorns. Sally and I shared the salmon dinner and Jake and DH had steak. The four of us then enjoyed the romantic comedy "Hope Springs". Both husbands could follow it. Our friendship with Sally and Jake is so important for making life normal for our husbands and Sally and I gain so much mutual support from each other.



from Pinterest--we need to friend



Last week my doctor was happy with my weight loss, but I still need to do more walking than only three times a week for the HDL number to improve. With a flare-up of carpal tunnel from over 15 years ago (maybe too much Pinterest, folks) I should not do many weight bearing exercises now. I am trying to avoid heart problems. My doctor let me cut down on one medicine which would have put me in the donut hole. Hubby is already in the donut hole with his medicine. It is interesting that Herb's cholesterol numbers in July are great and support his use of coconut oil.

Last Tuesday the arm on hubby's glasses broke off. Because we have Preferred Care for our Medicare coverage, we have a vision plan and a hearing plan. We both went to get new glasses from Plant City's new Eye Express. The glasses didn't cost us other than our adding tints for $50 for DH and UV protection for $12 on mine. I had lost mine in Louisiana last fall and have been wearing over-the-counter ones and trying to remember those sunglasses because of my cataracts. Hubby keeps asking when those glasses will be ready and I keep telling him Tuesday, unless the hurricane means Eye Express will be closed.

Hubby can ask at night what we did during the day and I recount the events for him, usually when we pray at bedtime. We do have so much to thank the LORD for each day.

Saga Twenty-Six

Car trouble. It's leaking fluid on Wednesday. Hubby notices when we are on errands. Says that someone who parked in our place before must have had a problem. Several hours later I also notice this liquid in our garage when I go to bring something to the car. Hubby has more long-term memory of car repairs than I ever had. I have also never driven a car with so many miles on it. I show DH the problem liquid in the garage.

You may recall that our newer car was totaled. See Saga Seven. The 1999 lots-of-mileage-gas guzzler has been our means of transportation for the last year and a half. It has served us well with our camping adventures. No more popup camping and probably no more camping. Hubby is very happy to stay around home with ventures out for activities and errands. He has accepted not driving as reported in Saga Twenty, despite the fact he passed two Alzheimer's driving tests.

"Call triple A," he tells me. I do that and the same Plant City tow company that picked up our totaled car comes and takes the gas guzzler away. The driver remembers out totaled car being in their towing yard when I show him the picture. I tell him how I use that experience with a DUI driver when I teach classes for DUI offenders.

"Where is our car?" hubby wants to know and I tell him what happened.

Again, "Where is our car?"

"I am bored," he proclaims. This is curious to me because he is usually content watching his extensive collection of old movies which he keeps right before him on the couch. There is no car for us to venture out of the house. I realize that he does like variety. He likes going to Toastmaster meetings with me and of course to our church. He loves going out to a movie if I can find one that has a strong plot, without complicated dialogue and intrigue, that would suit him.

We go to bed at the proverbial old people's time of 8 PM. Thursday and Friday the car will be repaired. I have appointments to change and need our car Saturday and all next week.

It's Thursday morning and I talk calmly about the car being fixed. He has forgotten about the estimated $800 needed to fix the car, but I haven't. I miss the strong hubby who used to take charge of car repairs.

LORD, help me just to do the next thing at home and to trust you for the outcome.

Added Saturday morning, July 14th. Got car back last night with the $1127.75 bill;  took $500 out of savings and charged $627.75. Labor was $878 to get to the problem. Something about the heater and cooling systems. Mileage for this 1999 gas guzzler is 192, 485. Maybe it will last to 300,000 miles now. Have a busy week ahead and glad for two days it could be fixed. Grateful for Sally and Jake who took us to get the car and had dinner with us. Hubby and Jake are soooo funny together.

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.

Saga Twenty-Four

I had to attend a workshop in Orlando, Florida. Hubby wanted to go with me and was willing to sit in a lounge area during the 9 to 4 workshop. The first hour he contentedly sat there--no TV--didn't want a paper. He still reads hymns at church when we sing, but doesn't like to read much else except his daily schedule. This has got to be annoying for him, I thought.

I asked one workshop participant who sat next to me if she would mind moving to the only other vacant seat in the room. The leaders agreed to let my husband into the workshop to sit beside me. This worked so well.

After the workshop, he said to me, "Carol, you work so hard. What fun thing do you want to do here in Orlando?"

"Outlet malls," I quickly replied.

"That it is!" was his reply.

At a large outlet mall with lots of customers, lots of purchases, we found a cool table with an umbrella for him to sit at while I went into Victory Secrets to buy gifts for two bridal showers. Success--I got the gifts! While I was gone, a gentleman approached my husband and asked if he had any money. Hubby said "yes" and gave him the $9 he had in his wallet. He could tell me about it later because it was an unusual happening for him. The next day at church he could also remember and talk about this event. I love the generous LORD in my hubby. Hubby was generous with a stranger and also generous with letting me have down time to go shopping.

We went on to find a place to eat supper on International Drive, so famous for all kinds of entertainment, shops and eating places. In the midst of traffic I turned left into a strip mall and found another umbrella place for hubby. Beautiful weather. He is happy to sit anywhere when I am nearby and if he needs me he calls me on my cell. He just doesn't have energy to walk around. I headed to a gift shop and found another gift for someone. He calls when I am paying for this T-shirt and then I meet him at the outside table. A waiter with an "I love Jesus" cap has given him a glass of cold water and we are invited in to eat at OWhirlyDome, 6464 International Drive.

It turned out to be a place that had been open only two days. We eat so boring usually, especially because I am on Weight Watchers, but decided on fancy with coconut! Coconut oil is on hubby's daily menu. We ordered a large coconut shrimp appetizer and a citrus salad--both so delicious--and shared both. We complimented the management that we couldn't remember when we had recently enjoyed our meal so much and said our waitress was so lovely. Hubby also enjoyed his Johnny Black Scotch and water! With not a lot of customers yet, I chatted with the waitress and performed two of my raps for her. Danielle said she was going to make that coconut fudge that hubby gets every day usually.

We drove home and I worked on my seminary paper on stress management--prayer and the caregiver. That 20 page paper is essentially done now, although the topic is huge. Have seen wonderful answers to prayer recently also.

Yes. I always have a lot going on and hubby just wants to be with me. Sigh!

Today we will go to the monthly senior group at Sally and Jake's church, where we are becoming regulars. I have been asked to do the devotional. I am talking on "leaving a prayer legacy."

Saga Twenty-Three

It's been several months since I have posted a saga. Hubby remains in stage one of Alzherimer's, thank the LORD!

Monday I had my husband angry with me (this is rare but part of the disease) because I didn't come home when the schedule on his clipboard said I should come home. I called to tell him why I would be delayed, but he didn't remember why--I was checking on his flight arrangements and even though I called to tell him about this, he became angry and had forgotten with the next phone call. In fact, as I called to reassure him when I would be home, he wouldn't answer the home phone or his cell phone as I fought my way through traffic to get home. Emergengies happen and what is an emergency to the patient, may not be an emergency to the caregiver who has more problem-solving skills. When I got home, I deverted his attention by our going out to dinner. Tuesday he had forgotten about my airport trip.

I wrote earlier about the emergency of the missing cell phone and the missing watch that upset my husband. Calmly, on my part,  we worked through that. Sunday a tech-savvy-20-something friend at church put pictures on my husband's new cell phone so he can remember names of people at church.

My emergency happened while cutting up tomatoes with my great Chef's Envy kitchen tool for dicing, shredding and chopping. I had been neglecting the safety handle. Sure enough I cut my thumb while slicing tomatoes and had difficulty stopping the bleeding. Hubby, who still has a driver's license he doesn't use, was going to drive me to urgent care. However, with pressure and ice I was able to stop that bleeding and with coaching he was able to finish dinner preparations.

The next emergency happened when we came home last Sunday after church.  Our air conditioning was broken. The dog was panting in the 89  degree heat in the house and hubby expected that I call someone. His computer died and I couldn't easily find the phone number of the man who installed this air conditioner several years ago. DH was beside himself. Situations need to be solved immediately for him.  I just thought we could go to our back yard deck and solve it on Monday, but no. It had to be solved immediately so hubby could watch his TV. I put ceiling fans on and opened windows.  A call in to our friends Sally and Jake and we had someone coming Sunday night. The dog and I headed to the back deck. Before I knew it, hubby was driving our car out of the garage so the repair man could get up in the attic to fix our air conditioning.

But yesterday we had a lovely outing, sponsored by Bok Tower and the Alzheimer's Association. I drove five of us including our friends Sally and Jake and a new lady friend Caroline (who daily visits her husband in a nursing home) in our gas guzzler. They helped pay for the gas. I saw other people whom I have met in care groups or workshops there and we caught up on their news.

Bok Tower and Sanctuary is approximately 50 acres founded in the 1920s by Ladies Home Journal editor Edward William Bok and designed and executed by Fredrick Olmsted. The purpose stated was to create a "retreat of repose and a refuge for birds" along with to showcase plants. Twelve paid gardeners and many volunteers including our tour guide work there. Although it was in the hurricanes of 2004, in several months in was restored and the tower was fine. Music chimes from that tower. At one point on the tour we were given a 20 minute session on tai chi, yoga, and pilates. Before lunch Sally and I had a massage, but our husbands didn't want  a massage and others assured them where we were. Both husbands had forgotten how we had gotten there--our car. Sally and I both bought plants and I planted ours when we got home. Bok Tower is giving caregivers a yearly pass to this retreat and others sponsors had gifts including lunch by a elder law firm. Sally won a gift basket and I won a $25 Walmart gift certificate. This morning hubby had to be reminded of our Bok trip, but did fondly recall it.


Sign Welcomes Caregivers



Jake and DH on the Tour

Saga Twenty-Two

Sally and I have been to two Alzheimer workshops in February--both held at her church. Our husbands hang out at our home while we attend such events. We made mistakes for the first workshop as I reported in the February 13th blog below; my husband didn't have paper on his clipboard reminding him of where we were and so both Sally and I got phone calls during the workshop from our husbands. My husband didn't understand about lunch. I had instructed him to cook pizza for the husbands, but that lunch never happened.

The morning of Valentine's Day the husbands again hung out at our home. Sally and I attended a lady's group that morning where I spoke briefly (one of my raps).  One of Sally's friends was there and reported some adorable gossip about Jake and DH. It seems a husband without Alzheimer's had sat between both of our husbands at the picnic for Sally's January birthday party. Both of our husbands went on and on about what great wives we are but both husbands couldn't remember our names! We chuckled at this story we received quite by accident on Valentine's Day. Then we went to our monthly Alzheimer's support group in Plant City. Jake knows it is at First Baptist, but my husband knows it is an Alzheimer's meeting. In the evening we celebrated Valentine's Day together by going out to the Olive Garden. We wives are in the habit now of ordering for our husbands and the men seem so happy to be friends.

So when the second workshop happened on Tuesday, both husbands had lunches we made for them by us wives. The day's happenings were on my husband's clipboard. It worked out so much better. Jake didn't know what the event was, but DH did know it was an Alzheimer's event.

At the workshop this week we received a fresh approach. The church's parish nurse contacted Annetta Delinger (http://www.karenboerger.com/) and Karen Boerger (http://www.annettadelinger.com/), speakers and Caregivers Advocates from Ohio, and authors of Joyspiration for Caregivers, Blessings and Prayers for Those with Cancer, Blessings and Prayers for Caregivers, several related products. I won Blessings and Prayers for Caregivers as pictured here. Sally bought all the books with several for gifts for relatives with cancer. I went to the first web site above (Karen's) and subscribed to their Nuggets of Hope newsletter. They can be reached at Caring Hearts Ministry, 800 Rosedale Road, Irwin, Ohio 43029.

The first session led by Karen started with emotions of a caregiver such as anger, guilt, and loneliness. Karen has been a caregiver six times over and knew what she was talking about. At our round table we were able to discuss some of these emotions as well as peace and joy.

Annette followed up with clever packages of ways to help the caregiver.

• Gifts of Encouragement. Leave messages on their answering machine or cell phone. Have matching prayer mugs.
• Gifts to De-stress. CD, tea, bubble wrap to pop, a journal to give the caregiver, stress ball, clay, lavender, and something for exercise. Respite time.
• Gifts of Food. I didn't write these down but they included nuts, frozen grapes, and dark chocolate I believe.
• Gifts of Words. How are you really? How can I support you the best? Do you want company today?
• Gifts of Organization. Create a coping journal that includes questions for the doctor, medications. Have a "love shower" for a caregiver--maybe change air filters and fire alarm batteries for them, or work in their yard. 
• Gifts for Long Distance Caregiving.  Have frozen dinners delivered. Cards that say things like I will be handling all your problems. Signed, God.

This workshop involved the participants in very creative ways. The two speakers have other workshops they put on. Ours was only three hours which included lunch by the church.

About Sally and Jake's church. Both times volunteers provided delicious lunches for the participants. We also attend a senior's group there about once a month. We are starting to get acquainted.

I must mention that our own church is very supportive of my husband and myself. This week we went to dinner with an elder and his wife. DH was so funny in our conversation and this couple didn't seem to mind it when he kept repeating himself.

These are good days to enjoy and the clipboard is working well for when I am gone from the house. How fortunate we are!

Thank you, LORD, for Sally and Jake and for others who share our life.