How to Interact With an Alzheimer's Patient

I have some hesitancy to take my husband places where people will not know how to respond to him and where he will not know how to respond to them. He doesn't remember new people very well. He seems to be able to be with a crowd for about two and a half hours now--this was true on Christmas day even though it was his daughter's home, but there were people there he didn't know too well. 

Usually after church hubby just sits while I go around and talk to people and he can become quite impatient after about two and a half hours of our afternoon church service and the socializing afterwards. 

At church I often talk with a lady who has Alzheimer's because I have been trained. One Sunday I even kept her from leaving church without her family. I held her hand as she was leaving and asked her where she was going. I am going to walk home, she said,  and she was indeed determined to get out of there. I walked out with her and as we left the church, she had difficulty with the steps and my holding her hand securely kept her from a serious fall as she slipped to the ground on the few steps. Soon her family were with her. 

Yesterday after the worship service at our church, I mentioned to a gentleman new to the church that my husband may not remember who he is, but will be warmed very much by interaction. I looked around after a while and sure enough two gentlemen were interacting with my husband. Hubby can be quite funny and a good conversationalist. The guys were enjoying talking. We were able to stay longer because two men knew how to talk with my husband who remained in his spot at the church. 

Yesterday the plan was to take Kenny and hubby home after our afternoon church service and then I would go to a 6 PM birthday party at a restaurant last night by myself. However Kenny was ill* and didn't come to church with us. I was hubby's pill popping buddy and said the same things Kenny said. I managed Kenny's job to shave and shower hubby. I am so grateful for Kenny's routines with my husband. 

Back to my hesitancy to take my husband to a social setting--two and a half hours is about all he can manage--an average movie showing. He no longer goes to Toastmasters with me--three or four hours at night is too long for him.  Hubby said that yes he would go to this birthday party with me after church and we filled time by going to Target, and waiting in the Target parking lot while I assembled the birthday gift. Hubby was happy in our car with the soft drink I bought him (he usually doesn't get one at home) and our simple conversation. 

About 5:45 we got to the restaurant parking lot for the birthday party, but hubby wouldn't go into the restaurant. He had changed his mind and told me to go in there and he would stay in the car--his comfort zone. I am so grateful, by the way, that hubby is comfortable in our new car, but I was not about to leave him in the car for two or three hours even though it was about the 70's outside and I could have the engine turned off. I knew he would be mad if I left him that long and even with a note wouldn't remember where I was. I took my gift into the restaurant and gave it to the lady whose birthday it was and told her my husband was in our car and that I wasn't able to stay because he wouldn't get out of the car. 

Fortunately a lawyer at the party came gallantly to my rescue. He came back to the car with me, reminded my husband they had met and smoothly got hubby into the restaurant. Men have a way with other men, but wives just have that "nag" factor, I believe. Kenny can convince my husband to do something much easier than I can also. 

In the restaurant finally we were seated and as usual he was happy for me to order his dinner. He sat at the end of a long table and could observe everything going on. 

The extrovert that I am, I was able to engage in conversation at the long table and was even asked to rap at one point. I "spit" a rap HERE in the restaurant. But hubby sat quietly and I would often hold his hand or say something to him. The restaurant was noisy and he really couldn't follow conversations but he enjoyed his dinner. Things went well for about two and a half hours. Then hubby was ready to go home to what is comfortable for him. I was fortunate to be able to enjoy that much time. 

As the main caregiver, I often get the wrath of my husband and this is normal for us lovegivers. Of course I forgive him, because I understand the disease and am committed to be there for him all his days. I forgive the impatience and the swearing because his social filters in his brain are gone. 

What is communication like at home? I am learning. When I forget to stand right in front of him, get eye contact, and say one idea at a time, he will often say to me:

You are not making sense. 

I am the multitasker who needs to repent, slow down, and be there for my hubby as he is going downhill.  With the LORD's help I want to love him and he does show that he loves me. Scripture says,

She does him good and not evil

All the days of her life.

Proverbs 31:12

* Pray for Kenny, folks, as he has a low resistance to whatever is going around.

Teepa Snow Workshop, Part One

At the workshop that Sally and I attended Thursday, Teepa Snow could explain communication with our dementia loved ones "like no body's business" and kept her audience fascinated the whole day. She visualized, she demonstrated, she imitated, she engaged the audience. The ultimate dementia coach--that she is. 

My day started with the challenge of getting hubby shaved and showered since Kenny has been ill and not able to do this. Kenny has pleurisy now and hubby hadn't had a shower or shave for eight days, hate to say. (Kenny's mother has graciously helped with pills and lunch while I work and Kenny was recovering, but I wasn't comfortable with her shaving and showering my husband.)  I hated his beard at church on Sunday, but now it was really bad. 

Hubby was in the bathroom when I woke up--the place where he needs to be for his shave and shower. I moved in ready to shave a man for the first time in my 69 years. 

I am going to be Kenny today for you, Sweetheart, I announced. 

The trimmer and the electric shaver I had bought this last year for hubby doesn't work on him--razors are in his long-term memory. Kenny had instructed me to use the cheapest razors: Lather up and shave down on the face. Shave up on the chin area. Fill up the sink with water to rinse in between strokes. 

Meanwhile I started the shower to warm the water and then turned it off. When the shaving was done, it was not hard to get hubby in the shower with the grab bars. Then I turned on the shower water and was even able to use shampoo on hubby's hair. Actually I got into the shower with him. 

At a break I told Teepa about my success that mirrored what she was instructing us about working with the brain of someone with dementia. I know more about their stubbornness, the whys, and how to deal with it because of our day in her workshop. 

So much came together for me in this workshop. Thanks so much to our local Alzheimer's Association and local sponsors for putting this event together. Thanks to Grace Manor in Lakeland for keeping my husband and Jake during this event. More on what I learned and how I am applying it in the next post. 

Book Review: The Peacemaker

It has been said that Alzheimer's brings out the best and the worst in people. Often I read on Alzheimer's blogs about conflict between family members about care for elderly parents. People in many caregiving situations read this blog and so this issue may come up in families who are seeing both the best and the worst in one another.

I am in my final classes for a seminary counseling degree and one of the required reading books, The Peacemaker: A Biblical Guide to Resolving Personal Conflict by Ken Sande, had a very insightful story. Now this scenario in the book I am quoting in no way parallels my situation, but is illustrative of both the best and worst in people and how Scripture and wise counsel can help the Christians who face such caregiving decisions. Ken Sande writes:

When a person earnestly pursues the conciliation responses to conflict, there is a greater likelihood that he or she will eventually see reconciliation. . . . The different responses to conflict and their association dynamics were dramatically revealed in the first family conflict I conciliated. I was asked to help seven adult brothers and sisters settle a guardianship dispute over whether they should keep their elderly mother in her home or place her in a retirement center. Five of the siblings were doing all they could to escape from the situation, either  by pretending that a conflict did not exist or by refusing to meet with the others to talk about it. The other two attacked each other intensely and frequently, slandering one another to family and friends and fighting in court to obtain control through legal guardianship.

The first step in resolving the dispute was to help the parties change the way they had been responding to the situation. The five siblings who had been trying to escape from the problem quickly saw the benefits of mediation and agreed to meet together. The other two sisters grudgingly consented to mediation, but they continued to attack each other during our meetings, accusing each other of improper motives and demanding opposing solutions. Our investment of time and energy was producing no results, and relationships were suffering further damage.

I finally asked to talk with the two sisters in private to help them discuss the personal offenses that were obviously fueling their quarrel. Putting the guardianship issue aside for a moment, I helped them to examine their attitudes and behavior toward each other. As we studied a few relevant Bible passages, the Lord began to work in their hearts. After about thirty minutes, the real cause of the conflict finally came to the surface.  Almost twenty years earlier, one of the women had said something that deeply hurt the other one. The offended sister had tried to pretend that she was not hurt, but she could not help brooding over the insult and their relationship was steadily poisoned. Consequently, they opposed each other in everything, even if it involved their mother’s care. 

As we continued to talk about their relationship, they began to deal honestly with their feelings and actions. They saw how they had been dishonoring God and hurting other people. As God opened their hearts, they confessed their sins and forgave each other. With tears in their eyes, they embraced each other for the first time in twenty years. They soon joined their brothers and sister and explained what had happened. Within five minutes, all seven children agreed that their mother would be happier in her own home, and in another fifteen minutes they negotiated a schedule for her care.  As you can imagine, when they told her the news that evening, the reconciliation of her children brought her even more joy than the  decision about her living arrangement (pp. 23, 24).

Now mediation with someone else might be needed with placement of an Alzheimer's loved one. We can grow in grace and in the knowledge of our faith in the process. The LORD doesn't waste any of our trials, and unless we choose to become bitter and discouraged, He will be there and turn our sorrows into joy and perhaps through mediation and of course through meditation on His Word.

I have loved the process of taking my seminary counseling classes since 2006 and can see the light at the end of the tunnel. One project was my book, Getting Off the Niceness Treadmill. Other papers have been on a topic related to Alzheimer's. I will be starting the dissertation some time in 2013, LORD willing. It has been suggested that I write my dissertation on being an Alzheimer's caregiver. 150 pages! Oh no! More stress on top of being a caregiver and on top of reorganizing the home for caregiving! However, with reading such wonderful resources as The Peacemaker there will be much to share in that dissertation.

Get the book, folks. Such help for all kinds of thorny issues.

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.

What I'm Learning About Senior Health, Part Four

I  have  hearing loss. I admit it! How does this manifest itself? People tell me. Talk sounds garbled to me. I tell people to speak up. So I went to an audiologist and she diagnosed my hearing loss. I have applied for a scholarship for those hearing aids. It is several thousand dollars and we just don't have the funds and Preferred Care Insurance will not cover it. Maybe the scholarship will come about.

Hubby and I can joke about my loss, but really it impairs our communication. I am in one room and he says something from another room, for example. Telling him to speak up doesn't work. Then when I get there he forgets what he said! We laugh about this, but I do need help with my hearing.

Speaking of applying for help, Sally suggested we use our local senior center for day care for our husbands. Both husbands are now on the waiting list. The fee is based on our income and we feel that our husbands will enjoy doing this together. However, my husband doesn't like the idea at all and says that Jake can just hang out at our house. He actually was mad about it--says he doesn't need a "babysitting" service.

Last Saturday our husbands enjoyed chatting while Sally and I walked around Lake Hollingsworth to raise money for the Alzheimer's Association. Our husbands were actually "babysitting" each other and so enjoy each other's company. Sally and I loved walking around the lake and the fact that we could help support the Alzheimier's Association which is so helpful to both of us.

Husbands sitting at far right

Lake Hollinsworth--almost a 5K walk

Music Therapy

Here is a helpful link: Music Therapy for Individuals With Alzheimer's and Other Dementias

From Pinterest

Music is the universal language. I am intentionally playing such music for my husband because I understand music is the universal language for our loved ones who happen to have dementia.When we travel in our old gas guzzler car, usually I put music on in the car through the speaker from my five year old iPod. An adapter plugs right into the old cassette slot and connects to that iPod. My husband and I listen to a worship playlist on Sundays on the way to church. The Sunday that I forgot my iPod, we sang hymns all the way to church.

Like Dolores' sweet husband David, DH loves country music. Our friends Sally and Jake have also introduced us to Blue Grass music.  I love playing our piano and need to do that sometimes also so I introduce this into our routine. That is, when my carpel tunnel wrists are better. Too much computer, folks, but I am using MSM from the health food store and wearing braces on my wrists at night.

There is actually an iPod drive for old iPods to benefit Alzheimer's patients. See here. Many people have those lying around because they have smart phones now. I have resisted getting an iPhone and even stopped texting to save expenses and to save my carpel tunnel wrists.

Even though my wrists are hurting these days, my legs are not. This will be the third fall that I am walking in the Alzheimer's Association event. So is Sally and I need to start raising money. Our husbands will hang out while we walk.

What My Husband's Dementia Means, Part One

My hubby has mixed dementia, meaning the neurologist diagnosed him with about 50 % Vascular Dementia and 50% Alzheimer's. The Family Doctor Organization helps explain what the broad category of dementia is.

• Recent memory loss. All of us forget things for a while and then remember them later. People who have dementia often forget things, but they never remember them. They might ask you the same question over and over, each time forgetting that you've already given them the answer. They won't even remember that they already asked the question. Perhaps this is the most annoying aspect until you get used to it. DH's grandson talked to him on the phone before church today and I heard my husband ask repeatedly "What have you been up to?" Special events in the past month and even year he does remember, but day-to-day conversation with him can be taxing if you aren't used to it.

• Difficulty performing familiar tasks. People who have dementia might cook a meal but forget to serve it. They might even forget that they cooked it. Hubby has always had me cook or plan the meals. He can warm up things in the microwave that I have clearly labeled for him. He can leave the lawn mower outside and forget to put it away. Or, it could be his lack of initiative for finishing a task. Jake, on the other hand, loves to feel useful and will even pack up their RV to go camping even when they aren't going camping! AS THEY SAY, WHEN YOU HAVE SEEN ONE CASE OF ALZHEIMER'S YOU HAVE SEEN ONE CASE OF ALZHEIMER'S--EVERY PATIENT IS DIFFERENT.

• Problems with language. People who have dementia may forget simple words or use the wrong words. This makes it hard to understand what they want. They say that with dementia the nouns are the first to go. I have seen this once recently, and LOL I can't remember what it was that he was trying to describe to me. He did describe a function of an object without that word.

• Time and place disorientation. People who have dementia may get lost on their own street. They may forget how they got to a certain place and how to get back home. Today my husband wanted to clarify where he lives and I told him Plant City, Florida. This surprised me, but it shouldn't.

• Poor judgment. Even a person who doesn't have dementia might get distracted. But people who have dementia can forget simple things, like forgetting to put on a coat before going out in cold weather. DH still has good judgment, but I notice that our friend Jake needs to be watched. Sally caught him spray painting something that didn't need it. Jake has lots of initiative to do things, in fact he helped my husband mow on Saturday.

• Problems with abstract thinking. Anybody might have trouble balancing a checkbook, but people who have dementia may forget what the numbers are and what has to be done with them. I do the finances now. He turned them over to me when I retired from full-time work several years ago. I really appreciate the systems he set up--on-line banking and an Excel spreadsheet to help maintain the budget. Hubby loves movies, but the older ones without subtleties are best for him.

• Misplacing things. People who have dementia may put things in the wrong places. They might put an iron in the freezer or a wristwatch in the sugar bowl. Then they can't find these things later. So true and I have blogged here about loss of keys and cell phones.

• Changes in mood. Everyone is moody at times, but people who have dementia may have fast mood swings, going from calm to tears to anger in a few minutes.  Life can be confusing for him and the result can be swearing and anger. Later he will forget the incident.

• Personality changes. People who have dementia may have drastic changes in personality. They might become irritable, suspicious or fearful. Knowing this I try to keep his life as calm as possible.

• Loss of initiative. People who have dementia may become passive. They might not want to go places or see other people. My husband is an extravert and so he does enjoy people still. He also wants to go places. However, he does show loss of initiative; often he wants to do the masculine jobs still, like mow the lawn, take out the garbage and carry heavy things, but I walk a fine line between encouraging him to mow the lawn and nagging. This will be worse this summer because of all the rain here.

The link above also deals with hallucinations, agitation and wandering, problems that are not huge so far.

One strange thing I have noticed is that when I am driving hubby will say things like:

• "That's [whatever] been on the road a long time." Don't think so, but they say never argue with someone with Alzheimer's.
• "They have been fixing this road for years." Not so.
• "That car needs to get out of the way." His agitation can be peppered with swearing, but I roll with the punches and at times change the subject. Sometimes he says he is glad that he doesn't drive anymore and of course I am also.

Sally has a backseat driver on her hands when she drives; Jake is constantly telling her how to drive.

Both of our husbands are very protective of us. When Sally was going to go get groceries on Saturday, Jake suggested I go with her while he helped my hubby in our yard. Jake felt better if someone was with Sally. While my hubby likes to go on errands with me, he can tolerate my going out to teach or to Weight Watchers, activities that he can't really attend.

Both Sally and I are in our marriages "for better--for worse" and count our days as lovegivers precious in this stage, knowing that the worse will come.

Ask Alex: The Automated Answer Lady at United

Talking to United Airlines is like talking to a hubby with dementia. You have to repeat things often. As a couple we minimize this by having a clipboard list of the day's events, but when we are out and about hubby asks repeatedly where we are going. I am very patient. It is not his fault.

However, when I brought the following United Airlines dialogue on the Internet to my Alzheimer's Association support group yesterday, we were all in stitches. The dialogue has been edited to take the United Airlines links out and I have put some of my dialogue with the pictured lady Alex in red.

Alex: Hi, I'm Alex, your united.com guide. I've been designed to make your time on our website as fast and efficient as possible. Just type in a question, keyword or phrase below and I'll take you to the information you're looking for.

You Asked: My husband has stage one Alzheimer . .

Alex: I'm not sure I understand, please try rewording your question.

You Asked: Can I walk my husband to the door of the plane because he has beginning dementia?

Alex: I'm not sure I understand, please try rewording your question.

You Asked: Where do I call to get my question answered?

Alex: I can answer many questions about reservations, but you can find additional contact information when you select the appropriate topic on this Web page. View Page

Here's More:

Contact Reservations

Contact United Customer Care

Contact MileagePlus by mail or phone

Baggage Resolution Service Center

You Asked: Contact United Customer Care

Alex: If you would like to provide feedback on a recent travel experience, use the form on this Web page. If you would like to contact United regarding future flight reservations, select the Contact Us link below. View Page

Here's More:

Contact us

You Asked: Contact United Customer Care

Alex: If you would like to provide feedback on a recent travel experience, use the form on this Web page. If you would like to contact United regarding future flight reservations, select the Contact Us link below. View Page

Here's More:

Contact us

You Asked: This has not been helpful, Alex

Alex: I'm sorry that I'm having trouble answering your questions.

Here's More:

Contact us

You Asked: I need to walk my husband to the plane door.

Alex: I'm not sure I understand, please try rewording your question.

You Asked: After the security check, I am not sure he actually will get on the plane. Please provide information on an assistant.

Alex: The Transportation Security Administration, U.S. Customs and Border Protection and the Department of Homeland Security work together to ensure the safety of customers, civilians and the United States as a whole. To view regulations and procedures specific to these agencies, please follow the links below.

Here's More:

Transportation Security Administration

U.S. Customs and Border Protection

Department of Homeland Security

You Asked: This is not my question. I need medical information.

Alex: I'm not sure how to answer that. I understand simple questions best, can you try asking that in a different way?

You Asked: Help! My husband might get lost flying by himself.

Alex: I am not positive that I understand what you are asking, please try rewording your question.

You Asked: Whom can I call?

Alex: I can answer many questions about reservations, but you can find additional contact information when you select the appropriate topic on this Web page.

You Asked: phone number needed

Alex: I can answer many questions about reservations, but you can find additional contact information when you select the appropriate topic on this Web page. View Page

You Asked: I have been trying to do that. My husband has dementia and I want to walk him beyond the security gate to the point where he actually boards the plane.

Alex: There's more than one answer to your question. Please select the topic below that interests you.

Here's More:

Boarding procedures

Security information

You Asked: Boarding procedures

Alex: Generally, uniformed military personnel, customers traveling in a premium cabin and Premier Access customers are invited to board the aircraft along with customers with disabilities before general boarding. Once pre-boarding is complete, United Economy customers are invited by boarding group. Boarding groups are assigned based on your row. Customers seated in the back of the aircraft board earlier than those seated toward the front of the aircraft. Once assigned, your boarding group will appear on your boarding pass.

You Asked: Boarding procedures

Alex: Generally, uniformed military personnel, customers traveling in a premium cabin and Premier Access customers are invited to board the aircraft along with customers with disabilities before general boarding. Once pre-boarding is complete, United Economy customers are invited by boarding group. Boarding groups are assigned based on your row. Customers seated in the back of the aircraft board earlier than those seated toward the front of the aircraft. Once assigned, your boarding group will appear on your boarding pass.

Here's More:

unitedhub.com boarding zones

Boarding passes

Premier Access

Travel documentation requirements

When to arrive at the airport

You Asked: Security information

Alex: The Transportation Security Administration, U.S. Customs and Border Protection and the Department of Homeland Security work together to ensure the safety of customers, civilians and the United States as a whole. To view regulations and procedures specific to these agencies, please follow the links below.

Here's More:

Transportation Security Administration

U.S. Customs and Border Protection

Department of Homeland Security

You Asked: Boarding passes

Alex: We have several options available for customers to get their boarding passes during the check-in process. You can go paperless with our Mobile Boarding Pass option, print your boarding pass from your personal computer, have it faxed to you or even print them at an airport kiosk. If you are within 24 hours of your departure time and are ready to print your boarding pass, select the Online Check-In link below.

You Asked: Goodbye


Alex: Goodbye.

Then I called the main airport, pressed zero as my option and found out that the way most airlines work is that we caregivers need to go to the actual desk at least two hours ahead of time and explain this to someone. I am going wayyyyyy ahead of time--days before--to talk to someone at United in person.

Sundowning and Obsessions

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

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

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

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

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

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

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

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

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

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

Still Stage One--What It's Like

Every person with dementia adapts to memory problems in different ways. Not sure what the stages of dementia are precisely (there are many descriptions of stages and many kinds of dementia), but I thought about our communication prompted by the Alzheimer's Reading Room (link at right).

We use a clipboard where I have typed the daily schedule. My husband has to check off things on it (take the dog out, have breakfast WITH pills, ask Carol if she had her pills, has she fed the dog) and it lists where I am substitute teaching or teaching a class for DUI offenders, when I will be home and what we are doing in the evening. This strategy has helped both of us--me because DH doesn't repeat questions often. Originally this clipboard list was his idea. He even likes this typed schedule when I am home all day.

Some TV news shows keep running the same news. He doesn't get it the first time and the news is repeated. I just can't keep watching the same thing over and over--but he can. I am around the corner in the den usually. He will say to me, "Carol, are you still kicking and breathing?"

I also call him when I get someplace to say I have safely arrived. Increasingly he is "shadowing" me. He wants to know where I am at all times because of that short-term memory and because this gives him security in a world that is becoming confusing to him.

Do our means of communication always work? No. I call him and remind him to have lunch, even though this is on this clipboard. It is the same lunch he is used to: a plate in the refrigerator with a bagged sandwich, yogurt and coconut oil fudge. Yesterday I called him twice during the day to remind him of his lunch. When I got home, he had not eaten his lunch and was hungry for dinner. He says teasingly, “I have been a bad boy. Am I going to get a whipping?”

I just smile at him and proceed making dinner.  In the evening DH will often say, "I think I asked you this before, but how was your day?” Calmly three or four times I tell him the answer to that question. My communication includes one thought at a time or he will tell me point blank I am not making sense.

Often he will not remember what he has decided (let’s go home and not eat at church, for example) and then later when he is comfortable he will say something different that shows he is enjoying his time at church with people he has known for over twenty years. Sunday afternoon he sweetly told of his love for me to others. Sigh!

Living with a husband with dementia, I have been forced to learn patience and other communication skills and prepare for future changes in our ability to communicate with each other. Yes that routine pays off usually, but we have left the house without his false teeth, or with his forgetting to shave. I have been forced to check-up on those routines.

What we do communicate is that we love each other. Like all couples in a happy marriage we have those rituals that show we love each other. What a privilege it is to be his wife/caregiver!

Book Review: The Best Friends--Part Two "The Knack"

Bob DeMarco from the Alzheimer's Reading Room writes:  "Television is a good baby sitting tool, 

it is not a good Alzheimer's caregiving tool.  In fact, too much TV will bring on the "dull"  faster than a speeding  bullet."  

I just never know how to involve my husband in "meaningful" activities.  "Wouldn't it be just great if he could do puzzles!" people suggest.  "Can you keep him busy?" you ask.  He watches old movies most of the time. This is what he wants to do. I am concerned, but yet trying to work to pay off bills for when I have to stay home to take care of him. He loves being retired and with our dog.

All I do know is that he is contented and I realize as a caregiver I must be doing somethings correctly--that I have a "knack". He loves it when I call him while I am away, but doesn not seem depressed at all.

It's like adopting a special needs child but not letting them know they are deficient but showering them with love. Perhaps there is no need to educate my husband on what is coming down the pike for him, that he should be doing puzzles. Ten years ago I knew very little about dementia and so did he. When he was diagnosed with dementia in December of 2008, he just said he felt fine. We do compensate for his short-term memory with a daily clipboard and regularly talking about what is happening for that day. He has changed, but is not able to do any more than what he is doing. Next week we are trying to incorporate exercise at the gym, however.

The Knack, according to the authors, is a whole set of caregiving behaviors.

Caregivers who successfully learn the Best Friends model of care will develop knack, or the ability to do something easily, and will learn many tricks along the way. Knack for families is all about resilience, about surviving the disease, about providing good care, and about enjoying moments with the person. It is about the quality of life, for the person and his or her loved ones. It is about working through the pain. One door is closing and another is opening. pp. 101-102

They say elements of knack include: being well-informed, having empathy, respecting the basic rights of the person, maintaining caregiving integrity, employing finesse, knowing it is easier to get forgiveness than to get permission, using common sense, communicating skillfully, maintaining optimism, setting realistic expectations, using humor, employing spontaneity, maintaining patience, developing flexibility, staying focused, being nonjudgmental, valuing the moment, maintaining self-confidence, using cueing tied to the life story, taking care of oneself, and planning ahead.

Take the area of communicating skillfully. This means one idea at a time. No pronouns to referred to something or someone in the previous sentence.

                                                               

Take valuing the moment. I have been working all week and have things to do today, Saturday. He doesn't want to come today, and is content to stay home. So we went to dinner last night. He loved it. At dinner he told me he loves me, loves the restaurant and loves his dinner which he slowly ate. I told him that I loved being with him. I didn't have a smart phone to play with, I don't text, I was there for him. I praised the LORD in my heart for this great date knowing what may come down the road with Alzheimer's. I valued the moment.

I think it comes down to having "the knack" as we are in Scripture and growing in the fruit of the spirit mentioned in Galatians 5:

love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control

Self-control is really needed in Alzheimer's care. We can't always control the anger or moods of our loved one, but with God's help we can grow in self-control. Speaking of self-control, I am soon off to my 7 am Weight Watcher's meeting and then on to a Toastmaster training event.

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.

Simplifying Conversation

• One idea at a time. One subject and one verb in a simple sentence. No compound sentences.
• Use the word, not a pronoun.
• Keep very calm.
• Don't mention the recent past because hubby can't relate.
• DH will write things down, a way of dealing with his memory issues, but needs my help to spell.
• LMT (lost my thought--see cartoon above). Do not interupt him because he will lose his thoughts.

These seem to be the cardinal rules of dialogue now with communicating with my Alzheimer's husband. I have read some of these suggestions elsewhere, but just decided to write them all down.

I can do this caregiving bit with the Lord's help. The Lord is my shepherd, my caregiver!

Why am I discourged?

Why is my heart so sad?

I will put my hope in God!

I will praise him again--

my Savior and my God!

. . .

But each day the LORD pours

his unfailing love upon me,

and through each nght I sing his songs,

praying to God who gives me life.

 from Psalm 42

What the Alzheimer's Loved One Wants

I am a guest author on Joseph Potocny's blog at http://living-with-alzhiemers.blogspot.com/  Joe has Alzheimer's and Frontal Lobe Dementia and writes frequently about his situation. He is quite an advocate! I also reviewed his book in January and February posts on our Plant City blog and he put those reviews on his blog.  

Recently on Joe's blog I developed nine guidelines to present to Potocny and he wrote six more.  So here are the fifteen guidelines that loved ones may be wanting from us.

1. Don't do everything for me.
2. Listen carefully and figure out the feelings behind what I am saying.
3. Don't nag me. Create a checklist for me to help me remember. The rest of the world has to use check lists also.
4. Enjoy my personality—I am not the disease of Alzheimer's.
5. Plan outings with me and don’t be embarrassed by whatever I do or say in public.
6. Give me visual clues for memory including a calendar.
7. Sing and joke with me.
8. Bring me into your world.
9. Say one thought at a time.
10. Do not hover over me.
11. No sudden changes.
12. Do not ask how I am doing constantly.
13. Watch your being needy.
14. Do not patronize me.
15. GIVE ME MY SPACE AND QUIET TIME.

Thank you, Joe, for letting me pick your excellent brain!

Communication with Husband

My dear husband feels in control when we go to a restaurant and he pays with his debit card. I help him with the procedure when the waiter is not at our table. If I didn't he might leave an inappropriate tip as the cartoon shows Herman with his $200 tip.

I am so into multitasking that I drive myself crazy. Not so with hubby. One thought and one activity at a time or he lets me know I am not making sense. However he seems to be ready for adventures, like running around doing errands. "Where next, Carol?" he will ask.

He misses driving, still has his license and he is still insured. Several weeks ago he seemed to recant his decision at the time of the crash to not drive again. He couldn't remember that decision. I was more comfortable with his driving the popup camper, especially with backing it up. So he will suggest he drives to an event and seems to like me to drive home. However I do most of the driving because he doesn't know where places are.

Researchers use the Montessori Method with AD Patients and speak in the moment and try to think of the meaning behind the words. Are they asking the same thing over and over? When my husband was obsessing about repairs on our camper, rather than dismiss what I knew was being  taken care of, we went to the JAYCO dealer again. That stopped his obsessing. The old-fashioned husband that he is still needs to feel in control. And you cannot argue with a person who has Alzheimer's.

Recently DH said he wanted to go to the shooting range. Rather than argue about this I reminded him calmly that we are into camping now and that our friend has his guns to sell. He was satisfied. Alzheimer's patients can get angry at Sundown or when life doesn't make sense to them. Why have any weapon around for future anger!

He has memories that don't make sense to me and I just calmly say nothing or say that must have been a previous time before we were married. He says we came within inches of running into a huge utility pole at the time of the crash. No huge pole existed at the crash scene. I don't correct him. However he would not be a credible witness in a trial!

He thinks his daughter broke her elbow months ago and I have to calmly inform him it was earlier this month. I am posting monthly pictures on his Facebook profile to show him recent events. He at times looks at these pictures, but has little interest in his computer any longer. He just enjoys his movies!

All of these strategies help with our "new normal" life, part of the cross I take up. From this morning's devotions from the end of Mark 8:

If any of you wants to be my follower, you must turn from your selfish ways, take up your cross and follow me. If you try to hang on to your life, you will lose it. But if you give up your life for my sake and for the sake of the Good News, you will save it. And what do you benefit if you gain the whole world but lose your own soul? Is anything worth more than your soul?

Which Magazine Gets It Right?

Last Sunday's Parade Magazine (November 21, 2010) has an article called "Unlocking the Silent Prison" by Christine Wicker. Ms. Wicker reports on work that focuses on what alzheimer patients can do rather than what they cannot do. Speech-pathology professor Michelle B. Bourgeois in the 1980s started creating memory albums and sentences to go along with pictures. The reason?

Spoken words literally go through one ear and out the other. Patients understand, but they can't store the memory. That's why they ask the same question again and again.  

Bourgeois also advises to write things down. I notice my husband likes to do that--write down when I will be home, for example, and also he checks with our large FlyLady calendar. He likes to label things around the house. Boureois is also quoted saying:

We find that if caregivers aren't stressed and in a hurry, if the patient is well cared for, and if they feel safe and in a good environment, they think their lives are good.

The picture with the article shows a sign "MOM--IT'S SUSAN."

Another magazine came to our house this week--AARP for December. At the top of the cover is "Exclusive Personal Portraits of Alzheimer's" and for a moment I thought AARP, The Magazine, might do something right. (AARP the supplemental insurance and prescription "help" have been fired for 2011.)  NOT SO WITH THE DECEMBER ISSUE OF AARP.

The photographer Gregg Segal just exploits real people with pictures from The Alzheimer's Photography Project.You can see the complete slide show at AARP's Alzheimer's Pictures. I will contact the young editor, N. P. Graham, with my thoughts on this exploitation. Is AARP, The Magazine, about exploiting old people as AARP, The Insurance and Prescription supplement is!!!!

How to Communicate With a Husband Who Has Dementia

Link to Ten Tips in red bold are from the Alzheimer's Reading Room. The ten tips are followed by my comments.

1. Make eye contact. My Sweetheart was watching "Fireproof" this Labor Day. We own that Christian DVD about marriage. I was sitting here at the computer when he said from the next room "I love you." Then I made it a point to go to the next room, look and him and say  that I love him very much and I am in this "for better for worse, for richer or poorer, 'til death us do part." He smiled back and continued watching "Fireproof". In fact he watched it twice today. We both had tears in our eyes during it.
2. Be at their level. He loves it when I sit by his side while he is watching TV which he does constantly.
3. Tell them what you are going to do before you do it. However, I am learning to write things down on the calendar. When I was teaching a class at night, I told him there was a frozen dinner for him. When I got home at 9 pm, he hadn't eaten and didn't remember what I had said. "What is the plan for dinner?" he wanted to know. The next night I wrote down fozen dinner on the calendar. We have a large calendar from FlyLady where I can write a lot down. I think this also means in the present--for example I say I am making breakfast and that is his clue to put in his teeth. When he doesn't pick up on this, I give him Ensure with his morning pills which doesn't involve his false teeth.
4. Speak calmly. Sometimes in his anger (part of the disease) I get accused of starting an argument. I let somethings go now and do not argue. I try to keep calm.
5. Speak slowly. I tend to speak slowly anyway from my years of teaching. However, a message on the answering machine is often delivered too quickly for him and he will ask me to listen to that message.
6. Speak in short sentences. He keeps teaching me this when I try to rattle off too much.
7. Only ask one question at a time. I really do frustrate him at times with my verbosity!
8. Don’t say “remember”. "Many times they will not be able to do so, and you are just pointing out to them their shortcomings. That is insulting, and can cause anger and/or embarrassment." Absolutely! I want to build him up, not point out his disabilities.
9. Turn negatives into positives. I remember when I sounded like I was nagging,  DH told me to not nag. His next sentence was asking me what he was supposed to do! I realized I have to be so careful how I phrase things. I am still working on this one.
10. Do not argue with them. I have to let my DH spout off about the bad drivers and traffic he sees. It will do no good to tell him to calm down, that we will get there when we get there. He is impatient about the driving of others, but is still driving safely now. Spout off all you want, Sweetheart! I can always say, "I see your point," even if I disagree.

Today DH said several times, "It's not fun getting old." Today I read in The Tampa Tribune about new research at the institute where we have our 10 AM appointment tomorrow morning.

Be All There

In the last several months I have been going to careging training and a caregiver's support group. Ask for help they say. So I did. There are tasks that my husband used to do that he no longer does. My neighbor helped me with one of them--maintaining the pump and well. Other caregivers understand.   

Well, folks, someone once suggested to me, "We want to help, but you will just have to tell us how." That was almost twenty years ago when my late husband died. Such a good thing to say to a widow. So I did ask for help. I had someone "babysit" me while I disposed of my husband's clothes--sad task of a widow. My pastor then also send people over one Saturday just to help around the house. Now I also need help or the sense that I have people I can call who care.

Be all there with my husband. My husband is delighted that I sit my his side while he watches TV. Now I am trying to reorganize the household, have a yard sale to simplify our house and to raise money, etc. Lots of things to do in the house. But sitting by his side is so important. How thrilled he was last year when I got a Notebook computer so I could sit by his side while he watches TV. We communicate  while I sit by his side--a touch, a smile. I let him initiate the conversation because what I might say often doesn't sink in. We have had two dates this week--he looks forward to going out to do things with me and gets all dressed up even though I say his jeans are okay.

Be all there. Who shepherds us? Do our pastors? An excellent blog I read today calls pastors to "be all there" for their flock. See--On Listening Pastors I wish I had the help of extended family. I wish I had a sense that someone is shepherding me as I go through this lonely road of becoming a caregiver to my husband. I cry out on blogs or e-mail sometimes to people who don't live here.

I am alone with the sense that my best friend, my husband, can't bear some burdens now (burdens about him). Then it is that I come to Scripture. So rich. The Lord is my husband. He will not suffer your foot to be moved. I cannot make it through the day without Him, meditating on Scriputre, and prayer. But Scriputre also tells us to bear one another's burdens.

"Are you all there?"

                                                               

Communication 101

"You didn't tell me," he said.


"Yes I did," I softly said and let him go on and on angry.


"You don't make sense."



Communication became hard yesterday. It made me realize again to write things down for my husband. When I talk about things in the future, he says to not bother him with it until that day.

I had to leave the house early yesterday. I left breakfast out for him and of course his morning pills. I called to remind him midday. He hadn't eaten. So I told him midday to eat both halves of his sandwich. I reminded him we were going to pick up my car at Firestone garage and pay/charge that $1100 bill when I came home. By the time I came home in his car I had used all day, all he had eaten was one half of the sandwich and also no breakfast and no morning pills. He wasn't ready to go with me to get my car. He was angry. "You did't tell me." I had told him, but he forgot.

Lord help us in this season.

Communication That's Not Communication

I learned this before: put it on the calendar. What I didn't know that is so obvious, is that spontaneous trips to the store can be a problem, especially if you don't pay attention to a weak ringing cell phone.

Here is what happened. We needed carpet shampoo, but my husband forgot he sent me out to get it. My husband kept calling my cell phone frantic to know where I was and I didn't pick up on the missed calls.When I came home from the store, he was mad because he didn't remember where I had gone--I should have told him—and I didn’t answer the cell phone. He was mad and I was hurt. Later he forgot that he had been angry, but I didn't.

However, I am over it now, and hopefully wiser.I need to constantly think about calling him to remind him where I am without sounding patronizing. Always use calendars and cell phones to back up verbal communication with someone who has short-term memory. And, a loud ring on a cell phone!