CONFESSION: Off My Niceness Treadmill

It is time I confess my stress and sinful anger at my husband Monday night. I was off the niceness treadmill that night in a sinful way, not in a logical, calm way as I wrote about in my book, Getting Off the Niceness Treadmill. I was yelling at my husband big time. 

Basically hubby was supposed to stay home while I went to Toastmasters.  I had the responsibility of running the meeting--I signed up for the Toastmaster assignment on Sunday when I noticed no one had picked up that key job. We had agreed on hubby staying home, I thought, and Kenny would make his dinner and check in on him while I was at Toastmasters.  Hubby remembered none of this agreement Monday night. 

Two facts about dementia loved ones such as my husband:

1. Short-term memory. Despite the fact that "Toastmasters" was typed on my side of the daily schedule, hubby denied that he wasn't going to Toastmasters. 

2. Dementia husbands like their home and if the wife is not home, they want to be with her wherever she goes. 

One fact about a Toastmaster meeting: Someone needs to be the Toastmaster each meeting and introduce everyone. 

All the details had to come together but everything was last minute. Monday people had to sign up for jobs for the agenda and I had to make the agenda when I came home from substitute teaching in public school and that wasn’t as easy as I thought. Volunteer caregiver Kenny came over to make Herb’s dinner and I couldn’t chit chat with him. But neighbor Kenny could understand I couldn’t chit chat. He saw my tension and left the dinner for hubby. 

You are trying to keep me home! hubby screamed. I was leaving, Kenny had left and by golly hubby was going to go with me to Toastmasters! Hubby hadn’t shaved. He hadn’t eaten his supper. He wanted to go at the last minute on my last nerves.  I hurried hubby along—very unpleasant for both of us. Uncharacteristically I started barking orders at him to get him ready. There was very little time. We argued as I drove us to Lakeland.  

The meeting went fine, although I need a hair appointment as evidenced on Facebook by all the pictures of me presenting ribbons to various people. No time for a hair appointment as I am working six days this week. When do I blog? I fit it in for therapy. 

I apologized to hubby when we got home from Toastmasters and he had forgotten all about our argument before Toastmasters. He didn't want his dinner which was left for him and I threw it away rather than heat it up. I made each of us a bowl of ice cream and sat with him to eat it. 

Lesson: Alzheimer's is a  S L O W disease 
and the world has to slow down for it. 

More Demented Humor

Bob: Why do you have an enema in your ear?

Other senior: Oh that's where my hearing aid went! 
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ 

Me on November 11 as hubby goes to the bathroom: So glad you are not using your urinal now so I don't have to empty it. [I have been emptying his urinal which he also calls his "pee jar" since August 27 when it has been hard for him to walk.]

DH: Oh, I haven't been using one since two years ago.

Is that right! I say to myself. Two years! No sense of time here! 

Now I have my aging issues also--mainly my hearing. Also as a senior I need to often use the restroom in the middle of the night to pee and this is one reason I am glad we no longer camp in a popup camper which didn't have a bathroom. I hated those middle of the night trips to the camp bathroom. When I sleep really soundly, I often pee on my way to the bathroom when I finally get up in the middle of the night. When I am wise instead of sleepy, I get up right away and no problem. 

But not always. Hubby laughed at me in the middle of the night when I told him about why I needed to change my PJs. Getting old ain't fun, I said and he laughed.  I think my self-depreciation makes him feel comfortable with his limitations. 
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ 

Get two guys with Alzheimer's together and there might at long last be an argument after three years of knowing each other. It was bound to happen. Both men are capable of asking the same question over and over again and Sally and I just act like it was the first time it was asked. 

One day Sally was going to pick up Jake at our home. Jake wanted to know when his wife was coming and kept repeatedly asking every minute or so. Hubby got mad. 

DH: Stop your [expletive deleted] asking the same question over and over. 

Jake: Stop you swearing or I will beat you up and never step inside your house again! He was very angry at his buddy of three years. 

Jake went out to the front yard. I went out there to see that in his anger at my husband he didn't walk away and wander. I took the hose and started watering the beautiful plants that Pharis had planted. Soon Sally came to get her angry husband. 

Both husbands forgot about the incident the next day. AD patients do not hold grudges! 

Alzheimer's and other dementias are not funny, but you just have to laugh sometimes. 

* First Demented Humor post was HERE. Pictures from Facebook I think, but can't remember!!!

It Takes a Village, Part Three

Plant City Barber

During the hospitalization of my husband and his recovery from the UTI, I got many wonderful suggestions from near and far. Basically, however, no one is in my shoes, living with my husband day after day, realizing his limitations, my time limitations and our finances. I am the decision-maker, the health care surrogate. No one realizes how stubbornness comes out in an Alzheimer's patient, who cannot be rushed to do anything--take pills, shave, take a shower, or get ready to leave the house. I actually have to combine patience with cunning.

However, last night nothing worked and I left the house and went to Sally and Jake's house. I felt like I was being bullied and ready for step two in the previous post. Let me explain.

Hubby's beard grew with his hospitalization. Last Thursday I stopped by his barber in Plant City and asked if the barber could not only give my husband a hair cut, but also a shave since the razor wasn't working so well with more growth of facial and chin hair. My husband didn't like the electric razor I got him for Christmas. We hadn't decided that he would become Santa, so we needed a solution.

"Get him a trimmer," the barber said on Thursday. "You can buy it at Sally's Beauty Supply." He wrote down three kinds I could get. He showed me how he maintains these trimmers with a tooth brush and oil. He explained that the trimmer can be used on the few hairs at the top of his head that just stick up. He can just go bald there. The trimmer will give him a "day old" beard look popular with movie stars. Why we even have a Sally's in our small town. They had one of the ones he recommended--an Andis Styleliner II. I bought it and last night was to be the trial run with a three-day beard my hubby had let grow since Saturday.

 Southern



Now I have also been studying my meat and potato hubby. I also know he likes barbecue sandwiches, and the chicken salad or meat and cheese sandwiches I have been making him lately just aren't cutting it. I stopped by First Choice BBQ and got him some meat fit for a Southerner's sandwiches--pulled pork. It works like a charm. Kenny heats it while I am gone.

To also thank this wonderful community, I have to say that with not a lot of time on my hands a shower chair was acquired at an estate sale last Saturday--just what I had been looking for and we have the large shower for it. We are on our way to solutions. Only my hubby wanted nothing to do with old people's stuff. No shower chair for him when he showered Sunday morning. But I am prepared.

Sunday hubby waited until the last minute to take that shower and wasn't ready for church which now meets at 2 PM. I left for church, and really was sad that hubby wasn't by my side at church. However, Kenny was home from his church and was able to check on my husband and heat up some BBQ for him while I was away.



Back to my leaving the house last night. Hubby was angry I tried to use this trimmer that the barber had successfully used on him three days ago. Do I have to go to the barber ever time for his shave? He doesn't remember the barber.

Last night hubby also wouldn't shave with his razor. I was at wit's end when I got to Sally and Jake's house. I held back tears, but I am sure I sounded frustrated and angry. "He doesn't want me to use the trimmer on him, and he won't shave so I left the house," I explained to our friends on their back porch.

I texted Kenny I was leaving and he texted me, "Are you okay?" Then Kenny called me and said I did the right thing by leaving.

Last night I was bearing my soul, confessing my anger at the situation to Sally in person and to Kenny on the phone. Sally prayed with me. Jake got on the phone, called hubby and worked out a deal. Hubby would shave with his razor and the four of us would go out to dinner. Then Jake started shaving himself with his electric razor--that is after Sally told him where it was.

Was hubby ready? A deal had been brokered. I drove Sally and Jake to our house and parked in the circular driveway and Jake went to the door. Hubby had shaved and put on a clean shirt--well actually a clean shirt over the T-shirt he had worn all day. The four of us would go to dinner.

As usual we wives order for our husbands as they can't decide these days. BBQ for hubby and a grilled chicken salad for me. However hubby does ask for a certain adult beverage. Grandpa Johnsons's Restaurant didn't have a Scotch and Water so hubby settled for his iced tea.

At dinner I let a few sinful barbs fly about shaving--just wanted hubby to feel my pain, although today he will have forgotten all about shaving. No solutions yet, other than the nagging wife showing her pain and sin. There are no solutions for dementia eventually. Why am I hitting my head against a brick wall?

I do still like living in Plant City, my village of people. Waiting still to use my new skill the barber showed me. I am open for business, folks!

Meltdown and Meditation

On rare occasions hubby gets really mad and then forgets about it the next day.  He even had me in tears by the end of Tuesday. His meltdown on Tuesday was about not wanting to go with Jake to the Senior Center. I could  also tell you in vivid details about the other two meltdowns with me since dementia came. One I wrote about here.

Anger goes with the territory of the loved one with dementia. I put a distress signal up on Facebook. The result was that my husband's ex called me and wanted to counsel me and I talked with her in another room away from my husband. It was so sweet that she called. She told me my husband used to be angry a lot in their 25 years of marriage. So maybe I can't blame it all on the Alzheimer's. It is the sin nature that we all have. When I came out of the room after the phone call to make dinner, my husband asked me if I were having an affair and I answered of course not.

Anger is in my husband.  I know this when we are in the car and I am driving. The traffic makes him so impatient. He swears--didn't when I married him.

Anger is in me. The students I substituted for on Thursday were difficult. My authority as the adult in charge meant nothing. I had two students fight in homeroom, and then the last period there was a theft of property and much rumbling. Today I go to an inner city school where my raps and good reputation do not work.  It seems the administrators do not handle problems at the school I am going to today. LORD, help me be the adult today when I substitute. This is the last day of midterms here and everyone is stressed.

The cold of winter is finally in Florida. Last night I started getting angry and told hubby that it hurt me when he promises things and doesn't do them. This was part of my distressed call on FB. (I hate it when others kvetch on FB, but I did it myself before I took my Facebook cry of distress off.) I yelled at hubby last night--very uncharacteristic of me.

Can't you remember to check your clipboard

and do the things on there?!

He had  forgotten his lunch again, and forgotten his shower. Furthermore he asked me to remind him to mow the lawn before the cold spell that we now have. Day after day he has forgotten to mow at least part of the lawn and gets angry when I suggest we hire someone to mow our 3/4 acre of grass. Can I ever get it through my head that with his dementia he can't remember? I hate the NAGGING WIFE I am.

Can I take my shower in the morning? he asked.

You will forget in the morning I snapped. He took his shower last night. He also put a dish in the dishwasher--something I can't remember he has ever done in our 13 years of marriage. I do not gloat at my short-lived victory, because it's me with the sin problem again.

"Get rid of all bitterness, rage anger, harsh words, and slander, as well as all types of evil behavior. Instead be kind to each other, tenderhearted, forgiving one another, just as God through Christ has forgiven you." Ephesians 4:31, 32

Thank you, Lord Jesus Christ.  Forgive MY anger. Thanks that you came to forgive me and help me. LORD, I need you. Help me be joyful today. In Jesus name, Amen.

 15 Things a Caregiver Can Do To Be Joyful

An Email Story and National Make a Difference Day

Today is Oct. 27th National "Make a Difference Day".  I posted that fact on the Alzheimer's section group board on Pinterest.

Sally sent me the following e-mail story about an angel (dog) and a grouchy father. Get ready to cry and think about what you can do today.

"Watch out! You nearly broad sided that car!" My father yelled at me. "Can't you do anything right?"

Those words hurt worse than blows. I turned my head toward the elderly man in the seat beside me, daring me to challenge him. A lump rose in my throat as I averted my eyes. I wasn't prepared for another battle.

"I saw the car, Dad. Please don't yell at me when I'm driving.My voice was measured and steady, sounding far calmer than I really felt.

Dad glared at me, then turned away and settled back. At home I left Dad in front of the television and went outside to collect my thoughts. Dark, heavy clouds hung in the air with a promise of rain. The rumble of distant thunder seemed to echo my inner turmoil. What could I do about him?

Dad had been a lumberjack in Washington and Oregon. He had enjoyed being outdoors and had reveled in pitting his strength against the forces of nature. He had entered grueling lumberjack competitions, and had placed often. The shelves in his house were filled with trophies that attested to his prowess.

The years marched on relentlessly. The first time he couldn't lift a heavy log, he joked about it; but later that same day I saw him outside alone, straining to lift it. He became irritable whenever anyone teased him about his advancing age, or when he couldn't do something he had done as a younger man.

Four days after his sixty-seventh birthday, he had a heart attack. An ambulance sped him to the hospital while a paramedic administered CPR to keep blood and oxygen flowing.
At the hospital, Dad was rushed into an operating room. He was lucky; he survived. But something inside Dad died. His zest for life was gone. He obstinately refused to follow doctor's orders. Suggestions and offers of help were turned aside with sarcasm and insults. The number of visitors thinned, and then finally stopped altogether. Dad was left alone.
My husband, Dick, and I asked Dad to come live with us on our small farm. We hoped the fresh air and rustic atmosphere would help him adjust.

Within a week after he moved in, I regretted the invitation. It seemed nothing was satisfactory. He criticized everything I did. I became frustrated and moody. Soon I was taking my pent-up anger out on Dick. We began to bicker and argue.

Alarmed, Dick sought out our pastor and explained the situation. The clergyman set up weekly counseling appointments for us. At the close of each session he prayed, asking God to soothe Dad's troubled mind.

But the months wore on and God was silent. Something had to be done and it was up to me to do it.

The next day I sat down with the phone book and methodically called each of the mental health clinics listed in the Yellow Pages. I explained my problem to each of the sympathetic voices that answered in vain.

Just when I was giving up hope, one of the voices suddenly exclaimed, "I just read something that might help you! Let me go get the article.”

I listened as she read. The article described a remarkable study done at a nursing home. All of the patients were under treatment for chronic depression. Yet their attitudes had proved dramatically when they were given responsibility for a dog.

I drove to the animal shelter that afternoon. After I filled out a questionnaire, a uniformed officer led me to the kennels. The odor of disinfectant stung my nostrils as I moved down the row of pens. Each contained five to seven dogs. Long-haired dogs, curly-haired dogs, black dogs, spotted dogs all jumped up, trying to reach me. I studied each one but rejected one after the other for various reasons too big, too small, too much hair. As I neared the last pen a dog in the shadows of the far corner struggled to his feet, walked to the front of the run and sat down. It was a pointer, one of the dog world's aristocrats. But this was a caricature of the breed.

Years had etched his face and muzzle with shades of gray. His hip bones jutted out in lopsided triangles. But it was his eyes that caught and held my attention. Calm and clear, they beheld me unwaveringly.

I pointed to the dog. "Can you tell me about him?" The officer looked, then shook his head in puzzlement. "He's a funny one. Appeared out of nowhere and sat in front of the gate. We brought him in, figuring someone would be right down to claim him. That was two weeks ago and we've heard nothing. His time is up tomorrow." He gestured helplessly.

As the words sank in I turned to the man in horror. "You mean you're going to kill him?"

"Ma'am," he said gently, "that's our policy. We don't have room for every unclaimed dog."

I looked at the pointer again. The calm brown eyes awaited my decision. "I'll take him," I said. I drove home with the dog on the front seat beside me. When I reached the house I honked the horn twice. I was helping my prize out of the car when Dad shuffled onto the front porch.  "Ta-da! Look what I got for you, Dad!" I said excitedly.

Dad looked, and then wrinkled his face in disgust. "If I had wanted a dog I would have gotten one. And I would have picked out a better specimen than that bag of bones. Keep it! I don't want it" Dad waved his arm scornfully and turned back toward the house.

Anger rose inside me. It squeezed together my throat muscles and pounded into my temples. "You'd better get used to him, Dad. He's staying!"

Dad ignored me. "Did you hear me, Dad?" I screamed. At those words Dad whirled angrily, his hands clenched at his sides, his eyes narrowed and blazing with hate. We stood glaring at each other like duelists, when suddenly the pointer pulled free from my grasp. He wobbled toward my dad and sat down in front of him. Then slowly, carefully, he raised his paw.

Dad's lower jaw trembled as he stared at the uplifted paw confusion replaced the anger in his eyes. The pointer waited patiently. Then Dad was on his knees hugging the animal.
It was the beginning of a warm and intimate friendship. Dad named the pointer Cheyenne. Together he and Cheyenne explored the community. They spent long hours walking down dusty lanes. They spent reflective moments on the banks of streams, angling for tasty trout. They even started to attend Sunday services together, Dad sitting in a pew and Cheyenne lying quietly at his feet.

Dad and Cheyenne were inseparable throughout the next three years. Dad's bitterness faded, and he and Cheyenne made many friends. Then late one night I was startled to feel Cheyenne's cold nose burrowing through our bed covers. He had never before come into our bedroom at night.. I woke Dick, put on my robe and ran into my father's room. Dad lay in his bed, his face serene. But his spirit had left quietly sometime during the night.

Two days later my shock and grief deepened when I discovered Cheyenne lying dead beside Dad's bed. I wrapped his still form in the rag rug he had slept on. As Dick and I buried him near a favorite fishing hole, I silently thanked the dog for the help he had given me in restoring Dad's peace of mind.

The morning of Dad's funeral dawned overcast and dreary. This day looks like the way I feel, I thought, as I walked down the aisle to the pews reserved for family. I was surprised to see the many friends Dad and Cheyenne had made filling the church.. The pastor began his eulogy. It was a tribute to both Dad and the dog who had changed his life.
And then the pastor turned to Hebrews 13:2. "Do not neglect to show hospitality to strangers, for by this some have entertained angels without knowing it."

"I've often thanked God for sending that angel," he said.

For me, the past dropped into place, completing a puzzle that I had not seen before: the sympathetic voice that had just read the right article. Cheyenne's unexpected appearance at the animal shelter, his calm acceptance and complete devotion to my father, and the proximity of their deaths. And suddenly I understood. I knew that God had answered my prayers after all.

Life is too short for drama or petty things, so laugh hard, love truly and forgive quickly. Live While You Are Alive. Forgive now those who made you cry. You might not get a second time. God answers our prayers in His time--not ours.

Later Stage Caregiver Laurie's Interview

Laurie’s husband, Gary, has Early Onset Alzheimer’s and is in a later stage than my husband is. We chatted on Facebook on October 15th and several times during that interview Laurie needed to attend to situations at home with her husband or an outside caregiver. I interviewed Laurie to learn from her for my road ahead and also to share our Christian faith.

Carol: Laurie, your blog, “I Have Been Young”, is so awesome. When did you start your blog?
Laurie: I started it in 2010. I've enjoyed it, but lately with all the transitions, I've been slow to get new posts done. I'm going to merge it with my website for my watercolor business. I am almost ready to have the new website published. Just working out the "kinks". I'll announce it on my blog when ready.
Carol: I love the last one with marriage pictures and all your sentiments. I pinned that on Pinterest into the Alzheimer’s section and noticed repins for you.
Laurie: Thank you I enjoyed looking at the photos of our wedding in that post too!
Carol: You created a digital box for your husband that got his attention. Does he still like that?
Laurie: He sees the digital frame rotating the photos while he is at the breakfast bar each morning. They are currently all photos from his childhood and teen years. Sometimes he seems to zero in on one, but it's not consistent. He especially notices the ones of the family ski-boat.
Carol: Communication by pictures when words don't work so well I guess!
Laurie: Yes. I assume he understands, or that at least they look familiar. Somewhere deep in his mind's long term memory, perhaps he remembers the waterskiing days.
Carol: Does the routine keep him focused?
Laurie: I'm not sure because the "focused" moments are so random now. I think the routine helps in other ways, like physically. His body is not "thrown off" by too many changes. But I try to balance that with what he used to like--lots of variety within the routine--different views, objects to handle, etc.
Carol: This takes a lot or coordination on your part. For my husband the routines don't bring up a noticeable difference until something like my hospitalization shows his decline. My husband is happy to be home and doesn't remember my being in the hospital now. What kind of changes became hard to bear for you?
Laurie: The need for so much more "in home" care has been a big adjustment. I must say that it is a very good thing (and necessary) to get so much more help, but it comes with a price. I have to release more and more of Gary's relationship with me to others. It's hard to describe this, but the random moments of connectedness are now sometimes experienced by him with others, rather than with him and me. I love knowing that they get to "connect" with him, and that he is enjoying himself, but I miss him and it's hard to share him. On the other hand, if I'm going to keep him at home, it is imperative to get more help, because I have a weak back and the Lord reminded me this weekend that I need to share the load with others.
Carol: It sounds like anticipatory grief kicking in to release Gary to the care of others.
Laurie: It is, and in a way. The Alzheimer’s disease gives us the time to adjust and as we greet each new situation, we learn and grow. As Dolores [another blogger] said, "Life goes on." It's not easy but it's best and we trust God.
Carol: Trusting God! Yes! “I Have Been Young” is your blog title and is a biblical quote from Psalm 37:25. I gain so much from reading how the LORD sustains you. How is the new schedule working out?
Laurie: The schedule is falling into place. We have about half of it figured out, and I still need someone for a couple of other days. I don't get someone all day, just during the most strenuous parts. I have had some "random" caregivers, here and there, and then our regular ones too. I want to fill in the other hours with "regulars" so they can get used to us, and vice versa, so am praying for direction on just the right person.
Carol: Hurting your back necessitated more help for you. How did you hurt your back?
Laurie: I hurt my back while helping Gary keep from falling the first time, He was losing his balance, on the slope of our driveway. The next time I don't remember, but Saturday I was loading a wheelchair into the car in a different place, and oopsie! My back! If I were to be hospitalized because of my back, I would call on good friends who live nearby to come right away in an emergency; then our regular caregivers to add extra hours if possible and get more caregivers to fill in the blank spots.
Carol: Like you I love the caregiving examples of Ken Tada and Robertson McQuilkin (A Promise Kept). We both value our marriage commitment. Are you in a support group or do you have specific people/elders behind you?
Laurie: We actually started a support ministry for Alzheimer’s/dementia folks in our church. It is a large church so there are a number of families affected by it. It's been going a couple of years now, and the elders are very supportive. We have a pastor of special ministries for the disabled, so he oversees us. I love going! We are also very involved in a neighborhood Bible study through our church. They have been incredibly encouraging and helpful to us. They even take turns staying with Gary now so I can attend. It's too hard for him to go now because he gets too tired.
Carol: I love how you chronicle your husband's prayers. We pray each night also. Sometimes my husband's missing neurons cause impatience and swearing. Then hubby forgets about it. Does Gary show anger? Anger in a wonderful Christian husband? I see it in mine.
Laurie: They get frustrated. Gary doesn't show it if he is. As believers, we want to please the Lord. We "buffet our bodies" and try to obey, because we believe God and want to serve Him with our lives. This is not easy, and when our minds are not healthy, and unable to process, and reason, it seems logical that unwanted behaviors come out. The soul is alive and well, but the mind is broken, so thankfully, for those who are saved and in the arms of God, He sees them in the righteousness of Jesus, and understands. We need to try to correct the sinful behavior, and redirect them to think about something else, remind them of the truths they may remember, and try to understand that they have less ways to handle their frustrations. I think sometimes that instead of anger outbursts, Gary gets even more withdrawn as a way to cope with frustration, or discomfort or confusion.
Carol: The book we both like, Blame It on The Brain, helps.
Laurie: I love that book. It's practical and helps sort out the sin from the disease. I wrote a blog post about that topic...I think it's called "Be Careful Little Eyes What You See"
Carol: Excellent. I will check that out. Is that blog post under lessons?
Laurie: Yes the blog post is under "lessons" December 12, 2011 here.
Carol: We ourselves as caregivers also have our own sin nature we. We both try to be superwomen and we can’t be that woman. You learned from Seven Habits of Effective People and I am trying to learn from The House That Cleans Itself so I can be there more fully for hubby at a later stage. How does the urgent, not urgent, important, not important grid work for a caregiver such as yourself? Does the painting get put into the not so important category?



Laurie: I need to move the painting from the "important not urgent" category, to the "important AND urgent" category since I'm trying to grow my business. Having more help will allow that, I'm thinking.
Carol: Is it hard to have people come into the home to help now?
Laurie: We are used to having people in and out of our home for different reasons. For many years Gary and I helped in our College ministry at church so our house was always being used for various events. The last 3 years before Gary got sick we had Seminary students renting rooms from us, so nice young men were around coming and going. So in that way, we are prepared. BUT I do like my privacy somewhat, but am setting it aside again for this season in our lives. It's necessary.
Carol: How have you simplified your house? I notice you will have to put a ramp in.
Laurie: The ramps are all installed, and working fine. We put tile and laminate where there was carpet a few years ago, knowing that would be helpful for Gary in a wheel chair. Other than that I haven't done too many things. Just getting some equipment that helps. I'm waiting on a "power lift chair" that will help him stand up, to save our backs!
Carol: One can get swallowed up in caregiving and we are told to take care of ourselves. I almost felt guilty in the hospital when I felt better and wasn't caregiving and working on the house. Hard to relax at times.
Laurie: Lately I've been thinking in terms of "pacing" myself for the long journey ahead. Gary is in the advanced stage, but in fairly good health otherwise, and like I said, if I'm going to have him with me, here at home, I need to be a good steward of my own body, emotions, and soul. (Well God is the steward of my soul ultimately, but you know what I mean.) So relaxing, and things like an occasional "cruise" with your sis, are good things to do! At least your recent hospitalization wasn't from a heart Attack!
Carol: That would have been worse for sure. Today he doesn't remember I was in the hospital, but is content to be in the family room watching TV while I am here in my almost clean den on the computer interviewing you. At first when he was diagnosed I used emotional eating and now I have that more in control. We have to change because they can't. One change that is hard at first is learning to speak Alzheimer's.
Laurie: Yes, but I think now that Gary is beyond speaking, and giving feedback that I just try to talk to him as if he understands, and then try to chat away. I just try to keep good hymns playing for part of the day and watch "benign" things on TV/movies that wouldn't be confusing. It actually helps with my own sanctification because I don't want to rely on his being able to be “discerning". In that way it is good for me. Simplifying life, and being his companion. But now, I am feeling more of a need to be well-rounded. Don't get me wrong though. I still have the occasional "melt-down." But don't we all no matter where we are in life!
Carol: All for our sanctification and growth in the Lord. People say "I don't know how you do it" and sometimes I don't handle the disease very well at all. Do you get respite time at all?
Laurie: I have respite time two days a week for five hours each day. I am gone from the house most of the time. One day is for errands and shopping and one day for friends, going to lunch or helping my parents. I am hoping to incorporate some time going to a concert, or art show, or overnight to the beach with my daughter or friend, as the caregiving time increases.
Carol: You are adjusting to more help. What else has Gary had to adjust to? Did your husband have a difficult time adjusting to not driving?
Laurie: Gary willingly surrendered his driver’s license, but I know it was hard for him. He has truly been so content with each stage. He is a good example of trusting the Lord. He has had a hard time with receiving personal care, but that's natural for anyone, I'm sure. All the same, he accepts it. As far as "adjusting" he is beyond that. He did have a hard time, not seeing his truck or garage anymore. He still turns his head when we're driving and he sees a truck like his.
Carol: Any problems with hallucinations, seeing someone else in the mirror, losing stuff, embarrassment when forgetting someone?
Laurie: I think he sees something because he reaches out to take hold of something, but it doesn't appear to be frightening. Not sure if he sees someone, and is beyond "losing things". He did get frustrated when he was in early stages with work related boo-boos and forgetting things. But that seems so long ago now.
Carol: Did Gary ever wander?
Laurie: Gary only took off a couple of times, in middle stage. Now he can’t walk unassisted, because of his balance issues. He wears a bracelet.
Carol: My hubby does too and I want to wear a caregiver bracelet now
Laurie: THAT is a very good idea. I should get one too.
Carol: What advice do you have for me for the later stages?
Laurie: I think the best thing to do to prepare for caregiving, is to introduce some outside people right now, in some small way so if/when it becomes essential, your hubby will be used to someone else being at the house, helping "you" and him. Even if it's someone who cleans, or does things in the kitchen for you for 2 hours a week, then when you have to "ramp up" the hours, or add someone else, it's more natural, and will be easier for him.
Carol: All of this is not easy, is it, Laurie!
Laurie: We live in a fallen world that is broken because of human sin. Without the Lord sustaining me, I would be given over to despair. I am a weak person who is able to come to the Lord for His strength. He is everything to me and Gary.
Carol: The Lord has promised to not give us more than we can handle. It has been a pleasure to chat with you on Facebook. I look forward to that new blog and I will link it to the right under my blogging friends.
Laurie: I’ve enjoyed this so much too, Carol. Thank you for asking me. I would love to meet you in person some day, but until then we will enjoy our cyber-friendship and it’s been a joy to spend this time talking to you. I even had my cup of coffee right with me the whole time too.

Handling Clutter: Beginning on the Den



Sewing projects just piled on pub table



Laundry to fold and clutter on pool table

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

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

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

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

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

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

Organize it for filing

Organizer from Office Depot in Box

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

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

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

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

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

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

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

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

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

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

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

App for iPhones

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

Do you have a clutter problem?

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

Do you have a devotional station?

Last Stage Caregiver Dolores' Candid Interview

Front porch chats are preferred, but when blogging friends are separated by miles, chatting and typing the interview on Facebook also works. My husband is in stage one of Alzheimer's and I wanted to know more about the journey. Dolores lives in Texas and I live in Florida, but we have become blogging friends. Here is the interview which took place recently.  

Carol: Can you chat now? I have one other message to do. Hold on. . . . I am back now.

Dolores: Been walking the dog, I'm back

Carol: Great! How was your day, first off?

Dolores: Very good, church circle ladies meeting and weather is wonderful...how about u?

Carol: I substituted. Easy day.

Dolores: Great...

Carol: You have always been neat, but how did this help you going into Alzheimer's?

Dolores: Just less mess and confusion for me and David. When my house is messy or cluttered, my brain feels confused. That probably sounds weird, but true for me.

Carol: A place for everything and everything in its place for David and you. Like you I want less and I want neatness and this will serve us well then.

Dolores: Yes, I started getting rid of what we didn't need right of way, sold our house, gave David's car to sister in law. My motto was less is better. All the things I gave away, I haven't missed them at all.

Carol: I both try to enjoy every day and plan ahead. However, it might be easier to ignore the disease. But that wouldn't be responsible. It has been hard for me to assume decision making when Herb had been the leader.

Dolores: Plan ahead and then enjoy every day.....you can't plan everything though; each person and circumstance is so different. One day at a time.

Carol: Was it hard for your husband when you downsized from a bigger home to a smaller home. Did David miss his old home?

Dolores: No, he didn't mind moving, didn't mind not driving. He’s always been very easy going which made it easier for me.

Carol: How did you deal with worries about David when your dear husband used to be your confidant

Dolores: I have a very best friend, she's the same age as my son...she's been my rock. We cry and laugh and discuss all the “what ifs”.

Carol: You often blog about her. How has blogging helped you during this time?

Dolores: Blogging has been so wonderful! I try my best to be real and honest with my feelings, and I feel like people really know me.. The blog has been good for me to unload my feelings, receive the wonderful comments, and keep a record of a timeline of the disease

Carol: Did David accept that he had Alzheimer’s?

Dolores: David accepted it from the very beginning; I know he suspected it....David's Alzheimer's went very slow and then started going down a couple of years ago.

Carol: Yesterday I asked my husband about how he feels about his short-term memory and he said he isn't bothered or doesn't notice it! How can that be! He forgets he forgets! Did David start to notice when it got worse for him--when he couldn’t do things?

Dolores: See, I would never question David about his memory ....I figured he knew it, and we didn't need to talk about it.....No, I don't think he was aware as he got worse, but maybe he did and we didn't talk about it. We didn't talk about Alzheimer’s, other than maybe joke when something silly happened, that it was Alzheimer’s doing it, and we'd laugh.

Carol: Did you have to deal with anger in David? I have had to with my husband several times. Then he forgot he swore or was angry.

Dolores: David would get a little upset when he'd see something that I didn't see, so I got where I'd go along with whatever to keep peace. The mood swings are just part of the disease I think.

Carol: As Bob DeMarco writes often on The Alzheimer’s Reading Room, you have to enter into their reality.

Dolores: That's right, and disagreeing or arguing only makes things worse. It's so hard not to disagree, but it gets you no where.

Carol: You would give him some melatonin so he would sleep well. Did you ever have problems with his getting up at night?

Dolores: I only gave him the melatonin for a short time. The only problem I had at night was for me to wake up when he needed to go to the bathroom....or might not find it. I didn't sleep well at all. Always trying to make sure he could find the bathroom or he’d go on the floor (many times).

Carol: Did you have problems with mirrors as some have--seeing some other man in the mirror?

Dolores: Never....in fact I have lots of mirrors. Also he didn't repeat questions or answers like we often hear, each person is so different when he would see things (hallucinations) it would be hard for me to keep my mouth shut and not disagree, but I got better with time.

Carol: Was Aricept 23 what made the hallucinations lesson you think?

Dolores: No...... As the disease progressed his hallucinations began... Aricept stops working after a while.

Carol: Did David ever wander?

Dolores: No he didn't wander, but I watched him closely.

Carol: Because of your blog I use music. I have playlists on my iPod that I often play for my husband in the car and will in the house at some point. This may work when DH no longer cares to watch TV.

Dolores: Yes, the music was so wonderful, because he suddenly stopped watching TV and reading....so listening to music and sweeping our patio were God sends—something he could do.

Carol: David would read, but my husband doesn't wish to read now. Did you need to find ways to entertain David?

Dolores: We'd walk the dog around the block in the morning and evening. I'd take him for a ride in the car....he'd sweep off and on during the day on our patio and the rest of the time he would look at the TV, or play his country music and clap his hands. That's really all he could do.

Carol: How did you occupy yourself with something when it got to that point?

Dolores: I love to work with my plants on the patio, organize and clean house, visit with friends and spent time on the computer. I started hiring someone to stay with him for a couple of hours so I could go shopping.
Carol: Was he talking fluently at the time you decided to put him in the nursing or Alzheimer's facility?

Dolores: No. He would say a few sentences that made sense and many that didn't.

Carol: I remember you sort of tricked him into going there.

Dolores: I started taking him there for respite care once in awhile. I'd tell him I needed to shop and couldn't leave him alone, he was ok with that.

Carol: My husband is having trouble being motivated to mow the yard. Maybe he'd like having someone else do it? What do you think? They say keep your loved one as busy as long as possible. I think we need to hire someone, but then he might take offense.
Dolores: Maybe if you tell him how much it will be helping someone else by them doing the yard. He might end up liking not doing the yard.
Carol: Yes. That might work. You have achieved for better for worse, in sickness and health and almost till death us do part. Will you be both relieved and sad when he dies? You have to be living in grief now when he doesn't know you when you visit him.

Dolores: I'm sure both feelings, but it's so sad to see him in bed, drinking his meal through a straw, blank look on his face....the David I knew is so different....mostly I will be relieved that he will be whole again when he dies, but I will miss going to see him...a mix of emotions.

15 Things Caregivers Can Do to Be Joyful

The Purpose Fairy has written "15 Things You Should Give Up To Be Happy" and the Huffington Post (calls itself the GPS for the Soul) has widely circulated it--click here.

Joy is the term I will use here instead of happiness.  I use kind, rather than nice. Joy and kind are in the Bible. But I will look at 15 main headings from the above post and make my comments or insert Pinterest graphics after them.

1. Give up your need to always be right. Do not argue with an Alzheimer’s patient. My husband found a Renuzit Aroma room deodorant in his workshop and he took it out, saying it didn’t belong there. It’s okay with him if it is in the main part of the house, but not his workshop. Oh well! I can joyfully go in there remembering that I don’t have to argue with him. There is a reason I put Renuzit there that doesn't make sense to him in his thinking and it just isn't that important.

2. Give up your need to control. But not always with this disease. I wrote a seminary counseling paper on the authority of an Alzheimer’s husband and concluded that, at times, I need to control to be the best helpmeet I can be with God’s help.

3. Give up on blame. I do not blame anyone for this disease and certainly not God.

4. Give up your self-defeating self-talk. Philippians 4:8 tells us to think on whatever things are true, noble, just, pure, lovely, of good report. . . . to think on these things.  

5. Give up your limiting beliefs. Philippians 4:13 says I can do all things through Christ who strengthens me.

6. Give up complaining.

Philippians 2:14 from the Jewish New Testament says Do all things without kvetching [Yedish for complaining].

  7. Give up the luxury of criticism. With the stress of the elections coming and the stress of daily living it is easy to criticize. I want to be a lovegiver instead—to give warm fuzzies, not cold pricklies (a ‘70’s term from Claude Steiner).

8. Give up your need to impress others. Impressing is pure pride as Scripture says: For all that is in the world--the lust of the flesh, the lust of the eyes, and the pride of life--is not of the Father but is of the world (1 John 2:16).

9. Give up your resistance to change.

I realized some time ago, that this journey of my husband's Mixed Dementia would mean a lot of change. I can hide my head in the sand, react to stress by emotional eating, or whatever, or I can research how I can be a good lovegiver/caregiver and give glory to God. This means lots of change that is coming down the pike. Change is growth.

10. Give up labels. I think that dementia issues do put limits on people, but they do not have to have labels. My loved one is not a disease, but a person. There are certain limitations he has, but disable does not mean unable.

 11. Give up on your fears.  My LORD knows how this will all end.

12. Give up your excuses.  This one is a hard one for me. I have to be more responsible now. Someone has to. I cannot say I am happy about my challenges, and would like to have excuses. And it is hard to ask for help as well.

13. Give up the past. This is so true. I live for each day and am thankful for what comes my way. Yesterday my husband mowed one half of the backyard, prompted by our neighbor mowing the front yard perhaps and my suggesting to him for several days it needed to be done.

14. Give up attachment. I love the lyrics by Michael Card in his song “Things We Leave Behind”:

Every heart needs to be set free
From possessions that hold it so tight
The freedom’s not found in the things that we own
But the power to do what is right
With Jesus our only possession
And giving becomes our delight
And we can’t imagine the freedom we find
For the things we leave behind.

15. Give up living your life to other people’s expectations.



I want to live so that one day the LORD will say well done, thou good and faithful servant and He won't expect me to be superwoman, just a woman abiding in Him.

The Problem of Evil in the World

Christian Research Institute has a caller ask about his Christian grandmother who has Alzheimer's. Is this Christian grandmother responsible for her misbehavior and anger? Hank Hanegraaff points out that she is covered by the righteousness of Christ. One day her soul will be reunited with her restored body at the resurrection in heaven. My husband swears horribly when he is irritated, but that is the disease of Alzheimer's--an opportunity for me to practice patience. Hubby didn't swear like this when I married him in 2000. He forgets later about his swearing and I know he is covered by Christ's righteousness even as that grandmother is.

What is the origin of evil? Hank Hanegraaff says that God creates the potential for evil. Of course secular people, some call them humanists, believe in the goodness of man. How can anyone believe in the goodness of man when you have a James Holmes open fire at a Batman movie? The problem of sin will be gone in heaven. This is the great hope that I as a caregiver/lovegiver have.

Was God in Control of 9/11? Hank says we live in a fallen world where both the righteous and unrighteous suffer. We Christians can have peace in the midst of the storm and rely on the justice and sovereignty of God.

Back to the question of what has happened in this horrible massacre in Aurora. One blogger pastor writes a moving account of a young woman who was hit by bullets in that movie theater. By God's sovereignty she came through difficult brain surgery. That pastor says that the mother and he "know a miracle when we see it". Read about this story Petra's Miracle in Aurora. I cried when I read this. Pray for Petra and her mother Kim.

Added Comment in August. Jay and Ruth Younts have an amazing testimony about trusting God concerning Ruth's brain cancer.  Listen at Shepherd Press.

I do not know what miracles or suffering await us in this life and in this God-permitted Alzheimer's journey, but I know the ONE who has the answers. He is working out His plan in our lives and I see His miracles and answers to prayer every day. Death, as horrible as it is, will never be the worst that can happen to a Christian.