Alzheimer’s Hope – Page 5 – Making Life Better Today

Doctor’s visits & direct communication

I took my father to the doctor the other day, and the doctor talked directly to him. He came in and said, “How are you?” and to my surprise, Dad said, “Just fine.” Dad seemed genuinely happy to be addressed, so I mimicked the doctor and included Dad (using the plural “we”) when we asked some questions that had come up since our last visit. Is this okay to do?
-Had A Breakthrough

Dear Breakthrough,
Absolutely! The first thing I have to say is: good for the doctor for keeping your dad in the conversation. This issue is very common and is addressed with Absolute Number 9: Never Condescend, Instead Encourage and Praise. It is so important that we not talk about our loved one, right in front of them, as if they are not even there. This can lead to angry outbursts or just an overall bad mood for your Dad!

To encourage others to keep your Dad in the loop, what you need to do is make certain that you and your dad are next to each other, and both facing the doctor or other person when he or she enters the room. When your dad answers the doctor, you agree with him by saying, “Dad is doing great in so many ways but we have a few questions about things that have come up since our last visit.” This keeps your dad in the loop as he plays an active role in at least part of his care, gets your questions answered, and makes the doctor feel that both of you are having your needs met. This is clearly just as simple as literally positioning yourself and your dad together, and restating what your father is saying in first-person plural. This is truly a win-win situation for everyone involved.

Getting trapped in your own house

Dear Jo,

It is getting more and more difficult to get out of the house with Dad. He has difficulty getting in and out of the car, and often at restaurants he can’t seem to sit down on the chairs. I want to be able to take him places, because it’s fun for both of us when we go to lunch or do a little shopping. Is there anything we can do to make the process easier?
Need To Simplify

Dear Simplify,
This is a very common issue for many loved ones. A process called Apraxia makes it more difficult for a person with Alzheimer’s to perform major motor skills. It’s not that it hurts or they can’t do it, but their brain simply isn’t sending their body the right messages.

This falls into the area of Absolute #8: Never Command or Demand, Instead Ask and Model. A picture is truly worth a thousand words. If your dad is having difficulty sitting down, position yourself somewhere he can see you, and go through the motion of sitting down. Very often that seems to provide people with dementia or Alzheimer’s a visual cue, and they will then sit down. It sounds too easy! It is easy, and it really works. The same thing works when people stop eating. Often it is because they just don’t know what to do next. If you sit across from them and eat, they will often model what you are doing. It is okay to take this easy route, it’s certainly much better for you and for your dad than trying to force a motion that isn’t quite happening.

Self Help Legal Switcheroo

We all like to save money—especially on legal matters. Millions of people are now using do-it-yourself online legal form services like www.legalzoom.com. To check it out, I went there, too. Their home page proudly raves, “Save time and money… created by top attorneys… helps you create reliable legal documents… we even review your answers and guarantee your satisfaction.” There is even a testimonial from an attorney who says, “As an attorney, I have been pleasantly surprised with the ease and efficiency of legalzoom.”

What is not as obvious, at the very bottom of the home page, is their disclaimer of liability. Go ahead and scroll down to the bottom of the page—you’ll see the disclaimer in very light print. It states:

“The information provided in this site is not legal advice, but general information on legal issues commonly encountered. Legalzoom’s legal document service is not a law firm and is not a substitute for an attorney or law firm. Legalzoom cannot provide legal advice and can only provide self-help services at your specific direction. Please note that your access to and use of legalzoom is subject to additional terms and conditions.”

The words “additional terms and conditions’ is a hot-link that if you click on it will take you to an even longer disclaimer! The disclaimer guts all of the assurances of reliability and suitability of use that you may have assumed were part of the “actual review of your answers and guarantee of satisfaction.” YOU ARE THE “LAWYER” WHO CHOOSES THE LEGAL FORM!

If you decide to be your own lawyer, please understand that legalzoom has the best of all worlds. They advertise that they will provide you with the best form of your choosing and save you money—but if you ever have a problem because of that document, they’re not responsible. You are the one who made the decision about which legal document was right for you and your circumstances.

Just yesterday in a meeting with a client, that client exclaimed, “Wow, I never knew that there were so many things to think about in our estate planning.” I responded, “You know, that’s what most people say when it comes to estate planning, disability, Medicaid, or veteran’s benefits. You don’t do this work every day, so you just can’t know all of the issues.”

The real value of what any professional counselor does is listen to your description of your circumstances and goals, and then choose the best course of action.

There is an old story about a factory which shut down due to an equipment failure. The owner of the factory called a renowned expert to rush to the factory to get things moving. The owner told him, “This shutdown is costing us $100,000 per day!” The expert arrived, walked around the faulty machine, then took out a screwdriver and adjusted a thing or two. Within moments the machine came back to life and the factory began to hum with activity. The owner was thrilled—until he was given a bill for $10,000. He roared, “But it took you less than 10 minutes to fix the machine—it cannot possibly cost $10,000!” The expert calmly responded, “No, it took me a lifetime to know exactly where and how to use that screwdriver. The bill is $10,000—but the value to you is $100,000 per day.”

Moral of the story: The right solution for the circumstances often requires a lifetime of preparation.

Never say “You can’t…”

I got home from work one day and the house smelled really funny. I could tell from the look on my Mom’s face that something was very wrong. “I was going to surprise you and fix supper. But I think I messed it up,” she told me. I went into the kitchen and on the stove was a blackened saucepan with four really strange-looking eggs. Apparently, she had tried to boil some eggs, but the pan had gone dry and the eggs burned before she noticed. We were both lucky that she finally did notice the pan, and was able to turn it off. Fortunately, I was well-trained enough to know not to fuss with her about the pan or the eggs. I just said, “Well let’s just go out to eat at that diner we like.”

I wish I could tell you I never left her alone again. That incident should have been a big red flag that she shouldn’t be alone. Unfortunately, I left her alone many times after that. While she never tried to cook again, she was nevertheless alone. It was actually several years before I even considered having her cognitively evaluated.

Absolute #7says, Never say “You can’t…” and instead find out what they can do – and there are a lot of things your loved one can do! How quickly our loved one can enter the “You Can’t” world and the standard response is to tell them what they can’t do and try to extract a promise from them that they won’t do it again. Somehow we seem to assume that they can truly ‘give up their disease’ and actually remember that they made a promise – as if it were an optional disease process.

Our responsibility as caregivers is to focus on our loved ones’ abilities, not their disabilities. We need to help them discover the things they can do well, and to provide those activities and introduce the environments where they can excel. This is an important responsibility for every caregiver, and the one that is often overlooked. Actually, we have the responsibility to find these activities and to provide a means for them to have opportunities like these included in their lives on a daily basis. The appropriate response to navigating this disease process and journey is to focus on them. It is critical to provide what they need, and a sense of purpose (which we all need!) so our loved ones have meaning and value in life.

The Veteran’s Helping Hand

This is a story about heroes who serve heroes—our veterans of the armed forces.

I first met the dedicated warriors of the Veteran’s Assistance Commission of DeKalb County, Illinois (DeKalb VAC) when they visited our law firm, Law Elder Law LLP recently. The DeKalb VAC provide a full range of services related to veteran’s benefits. I wanted to get to know them, because we need a knowledgeable source of VA benefit information in order to serve our clients with excellence. We deal with an important “sliver” of the VA benefits panorama; we often provide free advice to wartime veterans who are over 65 regarding the VA “aid and attendance” long term care benefit.

Interestingly, even though the State of Illinois has authorized counties to create Veteran’s Assistance Commissions, most counties have not provided funds to actually fulfill that all-important task. Here in the Chicago metro area we are fortunate to have several county veteran’s assistance commissions. Herb Holderman, Steve “Scooter” Scoughton, Linda Drake, and Tammy Anderson are the knowledgeable and caring team who help “needy and/or disabled veterans” at the DeKalb VAC.

Today, the DeKalb VAC serves several hundred veterans every year—but it has not always been there for veteran’s needs. The story of the founding of the DeKalb VAC is a testimony to the power of democracy, a great idea, and the focused persistence of honest men and women with servant’s hearts. Herb Holderman and other community leaders worked together to bring the organization into existence. Herb is now the superintendent—but he worked behind the scenes for years and was the driving force that brought life to the DeKalb VAC. After many years of trying to convince the political powers that there should be a Veteran’s Assistance Commission there, in 2003 Herb and the grassroots group were finally allowed to file a special tax referendum. The goal was to create a taxing district which would fund the veteran’s service organization. As you can imagine, the likelihood of passing a new tax seemed remote. Yet with the help of local veterans’ groups and other concerned citizens, they raised the battle flag and fought for support. The idea proved to be so popular that the referendum passed by a 76% “yes vote”—what a victory!

Today, only a few years later, they work to serve veterans from World War II through Iraq and Afghanistan. Their job is to help provide veterans with shelter assistance, food, utilities, transportation to medical appointments, and information about educational and vocational rehabilitation benefits.

When I asked what they thought was the most important part of their work, each one had a different perspective. Scooter responded that he enjoys creating close personal relationships with veterans and those who work at the VA hospitals and other principal service providers. That is his way to providing veterans with even greater access to benefits. Tammy shared that she believes that it’s her goal to be both a helper and a listener; she wants to provide the veteran with both patience and compassion. Tammy added, “The Vietnam veterans were treated really badly. I tell them that I am here to fight for them.” Veterans Service Officer Linda loves her job, and her only regret is that she is not a veteran herself. She feels honored to be doing the job of helping brave men and women with VA benefit assistance. Then Herb, the superintendent summarized this way: “Our veterans are proud, and they want to be able to stand on their own. When it gets to the point that they might lose their home, they come in to see us with tears in their eyes. Our job is to help them so that they can keep it all together.” Then he quietly stated, “Unfortunately, this year, due to the times, the needs of the veterans have doubled.”

Even though the needs have doubled, this is a story which has many happy endings. It is my privilege to have you meet Herb, Scooter, Tammy, and Linda. Every day they make life better for our United States Armed Forces veterans. I salute you!

How do I take care of me?

Dear Jo,

There is really no one to assist me with my husband, and I am exhausted. He doesn’t sleep at night, and he refuses to go to the senior center. Last time I left him home while I went to the store he wandered away, and a neighbor brought him home. Everyone tells me to take care of myself. But how am I supposed to do that?

Exhausted and Alone

Dear Exhausted and Alone,

You are in the place many caregivers find themselves, especially after a few years of diligent and self-sacrificing full-time care. This situation falls under the sixth Absolute: Never say, “I Told You…” Instead Repeat/Regroup. The “I told you” that I am speaking of is when you find yourself gritting your teeth, clenching your fists, raising your voice over some little action that would never have bothered you before. This is a definite sign to watch for that means you are already burned out. The person you need to regroup with is yourself.

You truly have to ask yourself, “What would happen to him if I had a heart attack and died?” With that in mind you need to know and accept that your greatest responsibility as his caregiver is to make certain you are still around to make sure his needs are met. That does not mean you have to meet all his needs (or wants) by yourself. You must have help as a caregiver, and it can be very difficult to accept help from anyone. Think of it as what he needs: he needs to go to a senior center daily so he has friends like himself. He needs to have other interests so that he isn’t so dependent on you. Don’t ask him if he wants to go to the senior center and don’t worry if he doesn’t like it very well. Sometimes it’s okay to let someone complain – did he ever complain about going to work every day?

Enroll him in activities, get ready in the morning and just go. When you get there, you can call the staff inside on the phone and they will gladly come greet him and take him inside. If he absolutely won’t go with you, then ask a friend of his to pick him up and take him to the center. There are also plenty of companion care services for hire (they are listed in the phone book) that can and help get him ready every morning and take him there.

Missing Mom

Dear Jo:

I miss my Mom and the relationship we had so much. It seems like we can’t have a real conversation about anything any more. It is so difficult to visit. I don’t know what to say or do, so sometimes I just don’t visit her. Afterwards I feel so guilty! Is there a way to have enjoyable visits?

Signed,

Missing Mom

Dear Missing Mom,

There are lots of ways to have enjoyable visits! True enough, it takes some change in your language – and some practice. Absolute number five says: Never Say “Remember,” Instead Reminisce. This will help you with visits.

Your mom will remember the past very well, and will like to talk about it. The most important thing to practice when you initiate these conversations is to try not to use the word “remember,” and start sort of in the middle of the sentence. With my Mom I would say something like, “When I was little and you were out milking the cows, you would ask me to listen for the phone. I always answered whenever it rang. Sometimes our neighbor Mrs. Kippes would get really mad at me, because it was her ring and not ours!” With that, Mom would just light up and start talking about the farm, milking and even about the neighbors. She would continue talking and we would both enjoy our visit.

Too often, we caregivers try to visit by asking direct questions, and when they don’t know the answers, they don’t know what to say! They may make something up, and we may become concerned that they aren’t telling the truth. We often confront them about how we remember that particular instance. This can result in arguing, reasoning, shaming or even lecturing, and so the visit becomes difficult for both of us.

Each of these first five Absolutes are about communication, and remember, they are all interchangeable. We just need to shift our focus on enjoying our time together, not on establishing facts about things that probably aren’t really that important anyway.

The Art of Being…98

“What in the world is that man doing?!” I asked attorney Zach Hesselbaum. It was a perfect summer afternoon and we had just left a client’s home at Alden of Waterford. We could see a man creating something with homemade tools in an undeveloped area across from the residences. We just had to get to know this man who, it turned out, was a pro at creating “landscape art”.

Dale Chatfield is a man of simple and powerful virtues. His initiative, integrity, and personality have drawn people to him, and then he has enriched their lives. Zach and I spoke with Dale and his charming wife Doris. They have been married 70 years.

Dale was born October 10, 1911 in the central Nebraska plains. He told us, “I grew up on the farm, and when I was a young man it seemed like I knew all the girls in Nebraska—but none of them were right for me! It was The Great Depression, but I headed off to find my fortune in Denver.” In Denver he lived frugally, studied accounting, and eventually got a job as an accountant for the Denver/Rio Grande Railway. But Dale was never meant to just sit at a desk. He is competitor, and is driven to always do more than what is expected. Doris beamed and proudly told us, “Dale has spent his whole life going the extra mile. We had a dry cleaning business for 32 years. The business, called D&D Cleaners (for Dale and Doris), grew because my husband always gave extraordinary personal attention to each customer. Even after people moved away from our neighborhood, they would drive back to have Dale do their cleaning. People value that special personal attention.”

Even after retirement, Dale has kept on making life more fun for others. From 1990 to 2005, he almost singlehandedly did the Christmas decorations and lights around their four-story senior residential center in Denver. Doris told us, “He was the only one in the neighborhood who decorated all four sides of their building! Everybody else just did the front. You know, he climbed up and down those tall ladders even when he got to be 92.”

If you want to talk about playing horseshoes, Dale is your man. He is a champion horseshoe player. He played in a senior league that included 40 players. During ten seasons, Dale was champion five years. Leaving Denver and moving to Chicago in 2005, his biggest disappointment has been that he can no longer find anyone who wants to play horseshoes. “They all say they have a bad back or a bad arm. I can’t find anyone who will play with me.”

I asked Dale if he could provide me with some of his keys to a long and successful life. He gave me a handwritten note that reads as follows:

God, parents, wife, and kids
Creator, genes, diet, exercise
Husband and wife 50/50; don’t let the sun set on your anger.
Honesty (don’t even take tax deductions if they are iffy)
Eat well but nothing fancy (oatmeal with raisins every day and good farm food)

Dale is a wonderful life model for the art of being—and living as—a very successful man.

Never Lecture, Instead Reassure

Dear Jo:

It is so difficult to get anything done or to go anywhere! I get Mom all dressed and ready to go, and while I am outside getting the car ready, she takes off her shoes – sometimes even her clothes! I need to get her to the senior center every morning so I can get to work on time. I get so frustrated that sometimes I yell at her! That just leaves me feeling so guilty.

Jo Says:

I had this same problem with my Mother. She just wasn’t aware of the importance of time, or my schedule. Absolute #4 says: Never Lecture, Instead Reassure. It is an excellent reminder for this issue.

When I had small children I would never have left them indoors to wait while I went to get the car! Of course it would have been easier, but it would have been extremely dangerous for my children. The same principle works here. What I had to accept was that I needed to keep Mom safe at all times, and that meant better planning on my part. However, even with better planning, when I took her to the car with me, there were some days we just couldn’t get things in the right order and I would lose my patience. When I became impatient, there were times I raised my voice. Or instead, I would try not to show how irritated I was, but she always sensed something was wrong.

When you are feeling annoyed and you want to lecture, the best thing to do is to apologize – even if you have done nothing wrong! If you can honestly say something like, “I don’t know what is wrong with me. I must have gotten up on the wrong side of the bed! Do you ever have days like that, Mom?” she is very likely to respond positively, and might even offer to assist. This way, you can move forward in a positive and enjoyable manner. The very act of admitting you’ve goofed changes your status, helps you to smile and laugh, and reassures your loved one that you are in this together.

Forever Santa

“How do you grow up to become Santa Claus?” I innocently asked the white-bearded man. Laying a finger aside of his nose, he looked at me gently and told his story.

“My birth name is John Scheuch, and Christmas 2009 will be my 34th year as Santa Claus. Being Santa is a multiple-generation calling—my father, grandfather, stepfather, and uncle have all donned the role. In 1975, my mother (who knew that I yearned to be Santa) gave me my first custom-tailored suit. But in those days I had a couple of challenges. First, nobody recognizes a young Santa with dark hair and beard. Second, I didn’t know where to go to learn all of Santa’s secrets! Being Santa is not a “guy-group” activity; you can’t just go hang out with a bunch of Santas to learn—and at the time I couldn’t find a mentor. Nonetheless, I had a calling to be Santa, so I decided to just start—after all, I had my suit… So I began to quietly share with a few friends that I was Santa Claus. One friend asked if I could come and visit his four-year-old son, Rex. When I agreed, he added, “When you visit, could you please tell Rex to turn out the bathroom light at night?” That was my first “ah-ha moment” as Santa, because a real Santa knows everything—but how can he, without a little help from the parents?

That was 34 years ago, and I am now visiting the children and grandchildren of those I first saw. I keep a file on every child I have ever visited. Now when I see a child whose parents I knew when they were children, I will often say, “You know, Mikey, when your daddy was your age he wanted me to bring him a red Tonka truck.” People are amazed that Santa not only knows all but he remembers everything about them too.

Let me tell you about a call that changed my life. One night, I received a mysterious call from a man who identified himself as the Chief Elf of “The Elves of Christmas Present.” The Chief Elf asked me several questions: “Do you really look like Santa? Do you work on Christmas Eve? Are you afraid to fly?” He then told me about a gravely ill child who had asked her parents to help her to go to the North Pole, see Santa Claus, and help him deliver Christmas presents. The Chief Elf asked me to help make that wish come true. I told him, “I’m your man!”

The afternoon of Christmas Eve arrived and I was getting ready. Suddenly the Chief Elf called again, and with a broken voice he said, “I have bad news… She died this afternoon… But her grieving parents want us to go on and take her younger brother.” Later that night I met a shattered family and a wide-eyed little boy. We grabbed my bag of toys and jumped into a helicopter. Together, we flew through a Kansas Christmas night, delivering Christmas gifts.

That moment caused me to want to devote myself to serving children with the greatest needs—children who are terminally ill, children in hospice, and children with a loved one who may be dying. My passion to serve has led me to become Executive Director of Santa America. It’s a non-profit, volunteer organization that brings love, hope, and joy to special children and their families.”

Help Santa John and Santa America to fulfill their mission. Please go to their website, www.Santa-America.org, and make a contribution to support them in their never-ending work of bringing Santa to exceptional children who are in crisis.