New Normal in Caregiving Is Hard

This link Seven Stages from The Alzheimer's Reading Room describes the "new normal" stage that my husband is slinking into--perhaps stage five of seven. Every care receiver is different. My husband is no exception. He is different from other sufferers, but like them is trying to feel normal even as he:

• Struggles to express himself with the correct words. I have to
  
  stop my busy pace and concentrate on what he may be trying to say. 
• Wants to say "no" instead of "yes". I am so glad for the good routines established that keep things as "normal" as they can be. Taking morning pills with Kenny is a routine that works. Taking evening pills with me at 8 pm is a routine that works. Waking hubby up at 4 am for a pain pill works, in that I put it in his mouth and he slightly raises his head to swallow water and then goes back to sleep. 
• Has diminished taste buds and interest in food. Consequently I try to find what food will work for him. Fortunately I can give him coconut oil with that dark chocolate. 
• Has less knowledge of time.
• Lights up when I come home.

In contrast I, the caregiver/lovegiver for my husband:

• Struggle to say the right words to my husband without appearing to nag, without giving too much information in what I say. It is quite a discipline to say one thought at a time. 
• Have to say "yes" to more responsibility and yet am simplifying and saying "no" to perfectionism and expectations.
• Have more knowledge of time, trying to multitask, and yet fearing caregiver burnout.
• Light up when I see him, yet do not feel "at home" at our home. Frankly, when I am teaching I feel more normal--I work for respite perhaps and also income. 

My new normal includes writing a dissertation in my "spare" time which often is while substitute teaching in good classes or early in the morning while hubby is sleeping. Currently I am writing the chapter on stress and depression and fighting both stress and depression personally. Time to book an appointment with the counselor. Time for prayer and meditating on God's Word. 

Graphics from Pinterest. 

Hubby Walks After Carefully Orchestrated Shower

Today has been such an fabulous day after weeks and weeks of struggle--the hardest of which was a husband who hadn't really walked since August 26th. Today my sweetheart walked a distance! I am glowing.

Walking to His Spot in the Den

Last time I blogged I wrote about his fantasy that he was walking, only to be followed by bring me the wheel chair. Walking has been the goal. I have told him that if he doesn't want to go to a nursing home he has to continue to walk more--not just hobble a little-- and to shave and shower. A gross beard was growing. The sponge baths were less than adequate. Now neighbor/caregiver Kenny had been released from the hospital several days ago and Kenny and I devised a plan.  It was time.  I needed my husband to shower and to shave whether or not hubby felt he needed it. It just had to happen, in my opinion. Kenny reinforced my resolve.

Kenny has a way with hubby that I as his wife do not have. I am the nag--the pill pusher. First Kenny took the Andis Styliner II Trimmer, the one I had purchased earlier when we had a shaving issue. Kenny is magic, a true gift from the LORD in our lives--so much patience with hubby. The two-week beard came off. Maybe we can start to use the shaver if that beard is kept in check.

"Do you want your shower now, or in fifteen minutes?" he asked hubby.

"Fifteen minutes!"

Kenny and I were united when the time came for a real shower. Taking off his clothes was the easy part. Actually getting him to step into the shower was another matter--he had been hobbling better, but was having none of getting into the shower with that weak knee. We decided to put the shower chair half way out of the shower.

Shower Chair Over the Edge

Hubby sat down and then Kenny brilliantly told him to put his two feet in the shower and stand. Kenny monitored his standing up and then moved the shower seat into the shower and hubby sat down. He was ready to shower--a true sit down shower that I had been lobbying for with that moveable shower head. See HERE. Hubby was able on his own to complete his shower.

When that shower was done,  Kenny had him stand and the shower stool was again put half in and half out. Hubby sat down and then put his feet on the rug. He stood and that shower seat was returned to the shower and he dried himself off with a towel. Hubby used the towel rack and the cabinet to walk to the wheel chair. I dried his back and we brought him in the wheel chair to the bedside.

A trick I had been using for most of the time since August 27th, was to have him balance himself with the arms of a sturdy chair, facing that chair. I used this chair when I needed to help him put on or take off pants. It worked like a charm.

Old Chair Does the
Trick In Getting
Hubby Dressed

"Do you want the wheel chair or the walker?" I asked him while he finished getting dressed.

"I will just walk." That he did! The most walking I have seen since August 26th! That hot shower sure gave him some spunk and perhaps continued the healing of his knee. No longer am I fearing the worst.

Among other great blessings today was that Pharis and his son, Junior, came over and did a bang-up job on the yard. It was mowed and weeded.

"It will take some time, but I think I will get this yard looking really great," Pharis pronounced. Pharis and son had used a weed trimmer to transform much of the yard today, but did not get to the roof.

Guinea Wasp

When I came home from getting my second set of fingerprints, Pharis and Junior were waiting for me. The yard looked great, but Pharis had discovered a guinea wasp nest in our yard and been stung by them. They found wasp spray in our garage fortunately (how anyone can find anything in our garage is beyond me) and as of tonight Pharis after taking Benadryl is okay.

What a wonderful day! Hubby is walking again!  He has showered and been shaved.

Today I also talked with a delightful lady who did my fingerprints (more on her story with another post) and discovered that my earlier post HERE was published yesterday as a commentary in two Florida papers:

http://www.theledger.com/article/20130906/NEWS/130909504/0/search

http://www.newschief.com/article/20130906/NEWS/130909504/0/search

I read much of this article to hubby and he recalled events mentioned in the article. Unlike last Sunday when hubby needed to stay home, tomorrow we head for church.

Signs of Memory Loss and a "Normal" Day

I again taught a class for first-time DUI offenders yesterday, Saturday. This second day of the class they read their essay on how their DUI is a wake-up call for a new life. Saturday I heard essays about going back to their Christian faith from three gentlemen. Dramatic things happen to cause us to cry out to God, as I often do on my caregivng/lovegiving journey. See here.

Early in the DUI class I share a picture of an old couple who were hit by a DUI driver two years ago here and talk about all the trouble they had. We get to the point in this 12 hour class of accepting the DUI and of moving on to never ever get a second DUI and then I remark that we are that couple in the picture, a couple who are grateful to be alive. It is very effective when these students equate us with that old couple and the motivation then is high to work to never get another DUI--so easy in our society with all our bars and cars. I often parallel my accepting my husband's dementia with my students accepting their DUI and moving on to never get another DUI. Life doesn't give us some choices.

Hubby had not taken his morning pills before I left to teach. I called when I got to the class and reminded him. Then I called two more times on breaks from the class. Finally I said, "You take your pills while I am on the phone" and he did just that. I reminded him about his lunch in the refrigerator. It is always the same so that he will recognize it: sandwich, yogurt and two coconut chocolate fudge pieces on a dinner plate.

When I returned home about four, he had not eaten his lunch, but had gotten ready to go out. No more jeans or T-shirt, but a nice button down shirt, slacks and better shoes. He likes to dress up to go out. He remembered that!

We left for the Tampa area and I used the GPS to check on where my appointment for hearing aids would be. All during the trip he kept asking what is the next thing we are doing, but was very happy to be out and about. We went to dinner at Sweet Tomatoes, a healthy buffet place. DH ate fairly well there and thoughtfully reminded me to leave a tip on the table.

"What's next?" he wanted to know, although the plans to see the  movie "Lincoln" had been made that morning. Hubby likes history so I thought this would work. The movie was great, but he didn't follow all the nuances of the characters and great acting. He said simply, "I didn't care for it."  Fortunately he wasn't agitated about sitting through the movie.

Because he doesn't eat lunch many days, he will need more supervision and the Plant City Adult Day Care Sally and I are trying out for our husbands seems just the ticket at this stage. He will get a hot lunch there and be with his friend Jake. Hubby will often ask,  "When's the next time I see Jake" and it's good for our husbands to be together which we are planning at that center.

So I move through our days accommodating hubby's memory losses and trying to hold on to the life we have. Normal? We have a calm relationship and he trusts me. It's 5 AM and I am going back to bed. Looking forward to our Sunday, today, with worship and fellowship.

Here is a good Assessment for memory loss.

Kitchen Reflections--As Perfect As Can Be Now



Ready to be mopped, enjoyed and kept clean





Camoflauge

 Mrs. Clark, in The House That Cleans Itself, believes in camoflauge. Regularly I make coconut fudge in ice cube trays so my husband gets coconut oil, probably a factor in his stability in stage one. While we have been using coconut oil for quite some time, a year ago I started the fudge. (See recipe here.) So I needed a camoflauge strategy for the ice cube trays and tub of Tropical Traditions or Lou Ana coconut oil that I am regularly using. Those trays come right out of the dishwasher and go here as pictured at the left. This is the HTCI system. This little corner production is out of the line of sight that Clark advocates. You look at my kitchen now and it works for us and makes me happy. But, it is not perfect. After all, FlyLady says:

Perfectionism is Shelved in 2012!

Speaking of FlyLady, why didn't her system take for me? (FlyLady is Marla, the author of Kitchen Sink Reflections.) She seems to have  whole industry now from calendars to special brushes for your toilets to water containers.  Probably my cargiving situation and the rah, rah of the FlyLady business didn't mesh at this time--too overwhelming.  HTCI seems to work best for me, but I still get FlyLady email and look at it from time to time.

Not perfection, but major changes. Now I want to cook and can easily clean the counter tops. Major kitchen and laundry room changes include:

1. Finding things and storing them where they are used.


Didn't work



What works












2. Getting everything off of the floor in the laundry room so that tile can be mopped easily.

3. Pantry closet tweeked so that it continues to work (see below).

4. Using cloth bags when I grocery shop so I don't collect those plastic bags.

5. Giving equipment away. Hope to have a party for young people and newlyweds to acquire some of those items as prizes.


Pantry closet opposite the washer and dryer



I will lead a life of integrity in my own home. Psalm 101:2 TLT

Monday was DH's turn to go to the chiropractor who got him to stand up straight. Can you teach dementia loved ones new ideas? I think so. I have been telling him to strand up straight because he can and because it helps his back pain. He does that more now.

Then Monday we went to vote early. I got in a booth next to my husband and assisted him the with process, thinking that maybe I would be thrown out. Not so. He was pleased that we voted early and also shows interest in news of Hurricane Sandy now.


Hubby asked when is the next time we see "Jake and Sally" and I told him that will be Saturday during the Alzheimer's walk. Sally and I will walk the 5K and he and Jake will wait for us. Who would have thought of two Alzheimer's loved ones babysitting each other! Please contribute if you can by clicking on the above link. I have not raised all my funds yet.

Cell Phones Cell Phones

My husband has trouble holding on to things like names of people, cell phones and yesterday his watch. This is not good for maintaining his equalibrium. The cell phone had been lost for five days and yesterday morning his watch came up missing. Calling that cell didn't work. We suspected the dog. Last night we set out after my day of substitute teaching to get either a working watch or a new cell. I think that he can use the cell to tell the time and date which is the function of his cheap Walmart watch. But I don't know that I can convince my husband he needs only the cell. He was given an expensive watch by my California brother several years ago and we take that watch in to get a battery and it turns out it also needs a new part to be able to set that watch. The repair will cost almost as much as a new Walmart watch will cost. I decide to wait and we go to Sprint to see about a cell. (We have lost cells before.) We get a new upgrade phone for him that has a camera in it that maybe he can use with his trip to see his son. I wonder if he can be trained to see the time and date on that cell instead of a watch, thinking that his watch may show up also.

Sure enough, his cheap Walmart watch with the day and date on it (Tues. May 1) that we love was on the bed,  hidden in the covers all day when neither one of us took time to make the bed. It had come off when he slept last night and I will try to get it superglued back together or maybe use velcro to fix it as you can't get a new watch band for it.

Meanwhile I am using the opportunity to program his cell phone to put memory clues in it like my name with "wife" and "neighbor" with name.


The school district says those phones may not be seen in class. When I substitute teach, I deliver one of my "old lady raps"/poems at the end of class when the students are on task and quiet.  Earlier this year I was substituting at a high school and took a cell away first period. Second period I took a cell away. Third period an actual request, "Can we talk on our iPhones when our work is done?" Everyone in that third period had a smart phone and one girl had a monster drink. Inspiration for a picture and a rap! I took a picture of everyone's phone and the monster drink and then the cell phones were hidden and the first draft of that rap was given at the end of the class.

Cell phones cell phones

You all have cell phones

Keep them hidden

They are forbidden.

Steve Jobs has cast his spell

But district policy says no cell

Steve Jobs’ iPhone can help you cheat

Text that question quite a feat.
“Are we allowed to talk on our

iPhones when we are done?”

I reply “No you can’t my son.”

But what will we do for fun?
You can have a Monster drink
That caffeine will help you think.

But district policy says no cell.

Even though Steve Jobs has cast his spell.

The district says no hood or caps

But you can hear a sub who raps.
Cell phones cell phones

You all have cell phones

Keep them hidden

They are forbidden.

One time a school principal actually did the background beat to my rap. Now the drama of my husband's cell phone and watch is greater in my life than the classroom battle. Alzheimer's is drama and keeping my husband in stage one normal is all my current drama.

Marriage and Alzheimer's

So today we celebrate our twelfth anniversary--quietly. DH's sister sent us a lovely card and we both gave each other cards. In the last week we have seen two movies--3-D Titanic, a movie we watched early in our marriage on a video. We also saw "Mirror, Mirror" which wasn't my husband's favorite, but I thought it was cute. We went to dinner at one of our favorite restaurants--not the best choice for my diet--but I did bring home leftovers. Then my husband forgot it was our anniversary several times in the last week including today.

A successful marriage involves for better, for worse, in sickness and in health. I hate the effects on Alzheimer's as we are going into what some call THE NEW NORMAL.

From wife to husband in "War Horses" movie:

I might hate you more. I'll never love you less.

I hate this disease, but I love my husband for his honesty in going through this disease. We are fighting it together.

“A successful marriage requires falling in love many times, always with the same person.” ― Minton McLaughlin

Living In the Moment: Highlights from "Think About It" Conference

Reagan by
Artist

Today while we were looking at booths at the conference artist Toni Trotti painted someone upside down and when he finished it, he turned it so you could see who it was! I blogged about him here on February 6th.

Dr. Arny Bush, from USF, spoke on "So What Is Dementia Anyway". She covered many terms simply and visually. I learned that with Early-Onset dementia (before age 65) the decline can be fast, whereas the older patient can have a slower decline especially if they early receive medicine such as Exelon/Aricept and Namenda as my husband has. At some point these medicines might not matterl. Early Stage such as my husband and Jake have shows functional impairment:

• Difficulty organizing and expressing thoughts (DH or Jake do not seem to have this although we have difficulty expressing things to them simply.)
• Memory loss of recent events (However my husband does remember the crash and our camper. His photo albums on Facebook help him with recent events also.)
• Difficulty with problem solving (DH shows no interest now in carpentry and the last thing he made, a bird feeder, seemed complicated to him.) 
• Difficulty with complex tasks. (His long-term memory helps him still, but he no longer wishes to handle our finances which he turned over to me when I retired from full-time school teaching.)
• Getting lost or misplacing belongings. (Keys, cell phones, yes. Getting lost--no. He used a GPS when we had two cars up until two months ago.)
• Personality changes. (Some days he shows Sundowner's Syndrome and gets very upset. So far I am the only one that has witnessed this.) 

Dr. Bush concluded with what she observes 1) "unconditional love" of the caregivers and 2) "living in the moment" of the patients. I have been so concerned with being proactive, that at times I do not enjoy my husband's humor and each day. I need to focus more on each moment and live in the moment.

Dr. Megan Janke, also from USF,  spoke about "Leisure Activities as a Means of Connection and Stimulation". I feel so good about going camping now with my husband--wonderful for DH and myself and also to share this connection with Sally and Jake. Leisure benefits the caregiver as well. Dr. Janke also passed out 101 Things to Do With a Person With Alzheimer's and I also found in on line here when I came home.

Brad Beatty spoke on stress management. Accept the new normal he said. He wisely told us to bring meaning to the situation and do not ask why but to what ends.

Cudos to Stephanie Thompson of the Florida Gulf Coast Chapter of the Alzheimer's Association and her volunteers for putting on such an outstanding conference for us caregivers for free.

Our Normal Life So Far

DH passed the DriveABLE test as we learned last week. The written report which came yesterday said he

appeared cooperative and effortful during testing. . . . .The driving performance is compared against normal, healthy drivers who also drove a dual-brake car. . . . [Husband's] driving performance revealed no evidence that driving competence is outside the range of healthy, normal drivers. Driving cessation is NOT indicated. Reassessment is recommended if there are significant changes in medical status or function. The recommendation is based on criteria developed through the scientific comparison of medically impaired and normal, healthy drivers across a broad age range. Those criteria enable normal, healthy drivers of [my husband's] age to receive a passing score. The DriveABLE Road Evaluation has been demonstrated through research to be sensitive and fair for both urban and rural drivers.

Wednesday he had an appointment with his primary care physician and I also went to that appointment, booking myself unavailable to substitute that day. I gave her a copy of the report on DH's Mixed Dementia evaluation from the Byrd Institute. She was pleased with his Hematology and Chemistry report that she orders every three months. The doctor agreed to let him stop the Plavix, which we are out of after 90 days, in favor of regular aspirin as suggested by a helpful comment from an earlier post on July 14 of this year. (By the way a lot of people have visited that 7/14/10 post according to the site meter.)  I have him taking ECOTRIN 325 mg Safety Coated Enteric Aspirin now. This saves us a lot of money. She was also glad that we use bright lights now in the family room where DH is always watching a movie.

Wednesday we also ran into a couple and had lunch with them at Plant City's Fred's Market. This was delightful and really my husband was great at maintaining conversation. I gave them a copy of my book. We were so full from lunch that we skipped dinner and went to my Toastmasters meeting. After the meeting we went to a McDonalds for dinner to see if I could get closer to winning in their Monopoly game. No luck and DH doesn't really like McDonalds he said. I am over eating there also.

This morning my husband was interested in the calendar for his chores. Change air filter. Wash the car. Love that huge FlyLady calendar and he had me write those chores on them. He also took note that the lawn needs mowing with his riding lawn mower. He has been puttering away at weeding the past couple of weeks for which I am grateful. We have a lot of yard to maintain. Carpenter James built this pergola structure between the two back yards several years ago and we enjoy the climbing roses on it.

I need to learn the procedures to the lawn mower because one day I will be the one mowing it; hope to make a sheet in my FlyLady Control Journal for how to use that mower.

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.