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-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.

Shot of Joy

Thanks so much for you who pray!

Yesterday I booked no sub jobs so I could be with my husband. I also got important work done at home and then in the afternoon we went out on errands. We went into Brandon to go to Macy’s so I could buy a wedding gift for my friend Barb in Minnesota. Then we went to Sweet Tomatoes for dinner. This time my husband didn’t major on the “where’s the beef” rant at Sweet Tomatoes and enjoyed the chicken from the chunky chicken noodle soup. I could stick to my Weight Watcher’s diet also.

As we were walking hand in hand to the car to go home, I noticed something dripping under the Ford Expedition, our only car since the crash of the newer Saturn with a DUI driver in December of 2010 written up earlier on this blog.  When we turned on the air conditioner, there was a horrible smell. We kept the air off and drove home safely without smoke or needles on the dashboard going bonkers.

Now my husband can obsess about something in the middle of the night and this can disturb my sleep. Fortunately when he did so Monday night, I was still able to function on Tuesday when I substituted. However, last night it was me who was not sleeping, and needing to work today. At one point I found that he was awake and I asked him a question, as if wanting back my old husband without Alzheimer's who could make decisions about car repair.

“Should I cancel substitute teaching so I can bring our one car in?”

“What’s wrong with the car?” I tell him about the water leaking when we left dinner last night.

“Yes, go ahead.”

I get up and get on the computer and cancel the job due to car trouble. I turn off the alarm, return to bed, and to try to sleep.

“What is the problem with the water?” he asks, interrupting my sleep. “Don’t we have enough?”

“Sweetheart, it is not the well water pump or the water to the house this time. It is the car that was leaking last night.”

We were able to sleep in to 8:00 am but I got up worried about getting the car repaired. I worry while doing all my familiar morning routines of feeding the dog, letting him outside and getting breakfast and lunch ready for both of us. While I am doing all of this, my husband keeps asking what the plan is for the day. It’s on the clipboard, but I remind him as if he is asking for the first time, not the fourth or fifth time.

My first car trouble. There was a time in college when I used a family car to get to my student teaching assignment; I froze the engine on our "senior sneak" with girls friends in the car and I remember this experience to this day. Other guy students had to pick us up and the car had to be towed to town. I remember my naiveté about cars and the generosity of my parents who in 1965 paid $300 to fix that car.

Surely I could destroy the whole engine again today on my way to getting it fixed as I had in college. And it wouldn't be that cheap to get it fixed!

DH prayed for me before I left and he said, “Lord, give Carol a shot of joy.” Knowing that our great God can answer prayers even of someone with dementia I left the house. I passed a field off workers picking green peppers. Soon I saw a yard sale with so many items I wondered if the family had emptied out their whole house. I drove the five plus miles to our Plant City Ford dealer and didn’t have to call AAA. Thank you, LORD!

A sign at the Ford dealer said “free inspection”. I explained more than they needed to know about me and Alzheimer’s and why our one car needed to work so that I could pick up extra jobs. I was cordially seated at a desk where I could work. I plugged in my Nook so I could power it up to read my morning devotions  from the reading version of the Daily Audio Bible. I plugged in my notebook computer so I could write this blog. THE SHOT OF JOY WAS COMING!

With my Nook recharged I read the Prayer for April 26 from the NIV Passages Bible

Lord, I ask you to renew my mind. Holy Spirit, please guide me so that I can find wisdom. I pray for the wisdom that can come only from your counsel and through a deep, abiding love for you. Guide my steps so that the kingdom may advance through me. I want to be a person of your Word through prayer and action. Amen.

Then I continued reading from Judges 6:1-40. The Lord has sent the Israelites a prophet to remind them that they have not been following Him. Nonetheless the Lord tells complaining Gideon to go in the strength you have (vs. 14) and I will be with you (vs.16). Gideon starts obeying even taking down the altars of Baal. Nonetheless he needs a fleece; it is wet one night and dry the next night while the ground around is the opposite both nights. Sometimes I need that reassurance of a fleece as well.

Next came my reading from Luke 22:54-23:12. Peter denies the LORD and Jesus is brought before Pilate and then Herod. Interesting verse (23:12) I hadn’t noticed: That day Herod and Pilate became friends—before this they had been enemies. Even though I have read/listened to the Bible every year for several years now, I had not noticed that interesting verse before.

Meanwhile Service Consultant Kent comes and tells me the problem is that a water pump needs replacing. They are ordering that part which will come in tomorrow morning and will work on the Expedition tomorrow and give me a ride home today.  Kent says something that makes me believe he is a Christian and I hear that he became one in his 30’s, his grandmother having prayed for him for years, never knowing on earth the fruit of her prayers. I lead him in prayer for his mom who is depressed now and write down that I will pray for her once a week. Another shot of joy!

Next I read from Psalm 95 and 96 and Proverbs 14:5,6 in my Nook.

• Come, let us sing for joy to the LORD; let us shout aloud to the Rock off our salvation (Ps. 95:1)
• Sing to the LORD a new song; sing to the LORD, all the earth (Ps. 96:1).
• Let all the trees of the forest sing for joy (Ps. 96:12).

A shot of joy for me--what my husband prayed for!  I get a ride home from James at the dealer. Of course I say home James. When I got home DH has forgotten about the car and where I have been but he is happy to see me. I thank him for his prayers this morning.  I can't substitute tomorrow because the car will be in the shop, but somehow I believe that the LORD will provide for our needs iincluding this car repair.

Added the next day (4/27). A day home with hubby and no car. It was so confusing to hubby especially in the afternoon. Lots of questions. What had happened to that car that he loves and now I drive when we go out? I call it the gas guzzler, but he loves being chauffeured around in it--says it is his favorite car ever.  His questions include how did we get home. Hubby even suggested that he should have handled this repair although I realized that his thinking was confused and it would be hard for him to handle.

The dealer called and said that it is the radiator rather than the water pump and they were working to get our car back that very day. They found the part in a warehouse so that it wouldn't be next week. The repair was much less expensive than anticipated and James picked us up about 4:30 and drove us back to Ford to pay for and get the car. All in all it was wonderful working with Kent and his crew. Thank you, LORD, for this shot of joy experience.

After we picked up the car we went to a movie, "Lucky One". This movie was one that my husband could comprehend, we both enjoyed and it had dogs in it! I reflected how simple our life is now, and how confusing for DH if one element, such as a car, is missing.

The Fear of a Caregiver

Those of us who are caregivers may have a whole lot to fear: our loved one may wander; hallucinations that result in violence; difficulties communicating; how it will all end; will our money run out; will our loved one continue to trust us or will they become suspicious; will they tell us if they have a pain; will they leave the stove on; will they leave the house naked; will I be asleep when something happens; end-of-life decisions when they can no longer swallow; will the loved one accept outside help so we can get a break; what if I can't take care of the loved one and how can I afford nursing home care; how can I maintain our home when it used to take two to do that. The worries are endless.

So the Obama administration has a new health care initiative for Alzheimer's that promises:

"In addition, the Fiscal Year 2013 budget to be released next week will include $80 million dollars in new research funding," US Department of Health and Human Services Secretary Kathleen Sebelius said today during a media briefing at the National Press Club. "Altogether, the Fiscal Years 2012 and 2013 investments total $130 million in new Alzheimer's research funding over 2 years, more than a 25% increase over the current annual Alzheimer's research investment," she said. The initiative also includes an additional $26 million in caregiver support, provider education, public awareness, and improvements in data infrastructure." See link.

How does the Alzheimer's and caregiver support get funneled down? How comforting is this?

What is comforting is the words that I read in my Bible yesterday from Psalm 31:1-7, NIV.

LORD, I have gone to you for safety;

Don't let me ever be put to shame.

Save me, because you do what is right.

Pay attention to me.

Come quickly to help me.

Be the rock I go to for safety.

Be the strong fort that saves me;

You are my rock and my fort.

Lead me and guide me for the honor of your name.

Free me from the trap that is set for me.

You are my place of safety.

Into your hands I commit my very life.

LORD, set me free. You are my faithful God.

I hate those who worship worthless statues of gods.

I trust in the LORD.

I will be glad and full of joy because you love me.

You saw that I was hurting.

You took note of my great pain.

Book Review: The Best Friends Approach to Alzheimer's Care--Part One

“What a grand thing, to be loved! What a grander thing still, to love!” ― Victor Hugo

Here is a book with so much wisdom for the caregiver that it needs three posts in my opinion. Sally put me on to The Best Friends Approach to Alzheimer's Care by Virginia Bewll and David Troxel. Sally has started using these principles with Jake. Today's post will deal with emotions that AD patients have. I will apply it to DH for the most part. Two more posts will follow from this book.

Chapter one insightfully lists common emotions and feelings of persons with AD.

1. Loss. It took some time for my husband to decide to give up driving. I was glad that he decided, even though he had passed the Alzheimer's driving test for two years in a role. When the driving privilege was abuptly taken from Jake, he experienced a huge loss. Our husbands want meaningful roles. I still look to my husband as a protector of the family. He checks the doors are locked at home and likes to accompany me whenever he can. The other night the dog barked at the smoke detectors making noises. My husband took great pride in handling this noise, taking down the batteries and planning to replace them.
2. Isolation and loneliness. It means so much to our husbands to be together. Sally and I both substituted one day in the public schools and Jake came to our house and spent the day with my husband. Next week DH will go to Jake's house while Sally and I are out and about. Jake helped DH with the yard and my hubby will help Jake with painting a fence next week and Sally at Jake's home. I am also concentrating on being WITH my husband as I wrote earlier on this blog on 9/29/11.
3. Sadness. Both DH and Jake are not knowledgeable about Alzheimer's, so their sadness is not amplified by what is coming in the future. However, Sally and I are often sad about the situation.
4. Confusion. I get asked every morning at least four times where I am going. Sometimes I say, Check the clipboard, where I have printed the schedule for the day. My husband has started to get confused about what word to use, a further deterioration.
5. Worry, Axiety and Frustration. We have one large TV in the family room where DH watches movies for most of the day. He has a large collection of cassettes and DVDs and also finds interesting material on cable. This large TV has the only box (of our three TV sets) where we can arrange to tape programs in the future. Last night I wanted to see the program where Dr. Mary Newport was interviewed; DH was very frustrated when I didn't seem to get him back to the right channel. In fact, in his anger and frustration he decided to go to bed angry. He wouldn't take his pills. He wouldn't pray. He was livid that I messed up his TV viewing. This was not intentional on my part because I saw that he was on the news and returned to the news; by this time he thought I had lost some other program he dearly wanted to see. 
6. Fear and Paranoia. People with Alzheimer's disease often look for an explanation about what is happening to them. (p. 16) One time DH asked me if I were having an affair and of course I assured him that I wasn't and would not have one. He was lonely and this was before I started being WITH him intentionally. (Early on in the disease I started withdrawing emotionally from him, thinking that I would again become a widow as I had in the past.)
7. Embarrassment. The person with Alzheimer's disease is in a giant classroom every day, one in which he or she never has the exact answer. (p. 17) It is best to not ask them any questions. Asking their opinion might help at times, but they can't even decide what to eat on the menu in a restaurant.

The approach written about in this book lets us caregivers know that these feelings are normal. Our loving understanding can minimize these normal feelings of a person with dementia/AD. The best way I can love husband now is letting his steady personality change and understanding that these feelings are normal and being WITH him through better and worse.

Saga Five

DH is trying so hard to have a normal life and I am trying hard to give him that normal life. He used to be the one who managed technology; however, it confuses him now--big time. Now I have to be up on everything--often a challenge for me. He has such a pleasant personality, except when something doesn't make sense to him.

1. He asks me how to input an address in his GPS and I write it up for him. Guess what the address was for? A movie store in Lakeland! Now I pointed out to him that Block Buster Video is closer and really don't want him going to Lakeland, but he enjoys his independence. He still hasn't figured out that Alzheimer's impairs him.
2. He asks for directions to be written for how he watches his movies on DVD and Video. Recently we realized that neither one of our DVD players were working and so we bought a cheap one--not the "blue" kind. He needs written directions so he can manage his hobby of watching movies.
3. The suggestion was made to order DVDs, but you know, hubby doesn't remember all about a movie and likes to own them so he can see them again and again. We have a list of his DVDs and videos so he doesn't order one he already has. Thanks to my sister-in-law for typing up that list I just maintain now.
4. He loves to accompany me and relishes rescuing me if I am somewhere and have car trouble. He has major places I work in "Miss Garmin", his GPS.
5. Two days this week he has forgotten to eat lunch. When the WellCare insurance man was here on Monday he was very mad about the length of the visit. (AARP is increasing their insurance fees next year. But we won't be under their Medicare Advantage plan any more and will save money not only on the fees but also on medicine.) He was hungry! We went to dinner after that important insurance appointment and when we came home I saw his lunch in the refrigerator. No wonder he was hungry! He hadn't eaten.Another day when I called I mentioned lunch; he said he had eaten, but really that was another day he was remembering.

Life still is confusing for him. The big FlyLady calendar helps so much as does his watch. Time is a huge part of his confusion and all I can do to explain time and events to him is so helpful.

Next week I get to be with him 24/7 and so he will have less confusion. Hope I can coax him into cleaning the carpet and weeding outside, but if not I will just remain calm and manage getting ready for our five Thanksgiving guests. Hopefully my sister-in-law will notice big changes in simplifying at the house. Still have to figure out what to do with the stuff in the garage that didn't sell. However, next week doesn't register in hubby's mind. One day at a time for hubby. We should all live one day at a time!