Alzheimer Hot Line

1-800-272-3900

Open 24 Hours a Day

You have come to a place of truth, support, and solutions to the distinctive issues and challenges faced by the spouses of Alzheimer patients. Please look on the left side of this page for all of the resources offered by this website. Then CLICK HERE for an introduction, information, and help on learning about, and coping with, Alzheimer's Disease.

Scroll down for Joan's Wed/Thur. Blog -A Primer on Driving and Dementia

'Brain Exercise' May Worsen Existing Alzheimer's

Years Later, No Magic Bullet Against Alzheimer’s Disease

The Shriver Report™, A Woman's Nation Takes On Alzheimer's

JOAN’S BLOG – WED/THUR. SEPTEMBER 1/2, 2010 – A PRIMER ON DRIVING AND DEMENTIA

I am discussing this issue again only because we have so many new members who are confused about the situation. The driving subject makes me break out in a cold sweat, experience heart palpitations, and want to crawl into a hole and hide. For those new members who wonder why this would be the case, I will advise you to read just a few of the blogs on this subject -39, 66, 128, 227, 231, 261- for the insight into the horror my husband put me through over what has come to be known as “the driving issue”.

This will be a straightforward blog based on facts related to reasons why someone with dementia should not be behind the wheel of a car. If you are going to ask me advice on how to make that happen and how to deal with it, forget it. My husband was voted the WORST case ever seen, of refusing to give up driving, by three social workers, a neurologist, psychiatrist, psychologist, and all members of my support group. His behavior was so vile and obsessive that his own Alzheimer buddies turned on him, refusing to be with him, because they could no longer stand listening to his constant ranting and raving. It was the fear of losing his friends that finally shut him up, NOT the realization that his behavior was putting me on the verge of a nervous breakdown. And let it be known that although he has stopped talking about it incessantly, his feelings about it have not gone away. Two years after the fact, he is still angry, hurt, and completely clueless about why he cannot drive.

THE BRAIN WITH ALZHEIMER’S DISEASE:

Logical reasoning is severely compromised, if not altogether gone.
Physical AND mental processing is slowed, and continues to slow as the disease progresses.
Spatial orientation is faulty.
Routine is necessary to keep them on track – the unexpected, such as always happens in traffic, can cause loss of impulse control, confusion, and anger.
Directional orientation is faulty.
Short term memory is faulty – affects such tasks as remembering to put on directional signals, remembering to look before changing lanes.
Attention and focus are shortened.

Now I ask you to look at the above list. Do you want to be in the car or on the road with anyone whose brain is working in such a manner? Would you allow your children or grandchildren to ride in a car with that person?

Those with dementia and many “experts” tout the use of extra mirrors, GPS systems, and back up “beepers” as aides to keep those with dementia driving longer. Those devices cannot repair slow processing and faulty judgment.

INSURANCE FACTS:

If you DO NOT alert your insurance company to the fact that a driver on the policy has a dementia diagnosis, you can be prosecuted for insurance fraud.

If you DO alert your insurance company to the fact that a driver on the policy has a dementia diagnosis, YOU are liable for any damage, injury or loss of life that occurs if they have an accident.

STATE’S POLICIES ON DRIVING WITH DEMENTIA:

Every State has different rules. In some States, a doctor is legally obligated to report the diagnosis to the DMV, and the license is automatically pulled. In some States, a driving test is mandatory after a diagnosis, but remember, most early to mid dementia patients pass those tests, because they examine normal driving skills, not reasoning and judgment. In some States, such as Florida, where I live, the rules are “subject to interpretation”. You will have to check the laws in your own State.

CRITERIA FOR STOPPING DRIVING:

There are countless websites on the Internet that list criteria for a dementia patient to stop driving. They are too numerous to list here – type “driving and dementia” into Google, and you will have reading material for months.

Many doctors will advise you to allow your spouse to drive only if YOU are in the car with them. That never made any sense to me. What is the point? So that BOTH of you can be killed? Others advise short distance driving. Does that mean that a child or animal will not run out into the street unexpectedly between your house and the store a mile away? Does that mean that your spouse will actually FOLLOW the rule of local driving only?

If YOU are questioning the ability of your spouse to drive safely, you have answered your own question, and the answer is .

Please post comments under the new Message Board Topic: Joan's Blog - A Primer on Driving and Dementia.

Feedback to joan@thealzheimerspouse.com

©Copyright 2010 Joan Gershman
The Alzheimer Spouse LLC
2010 All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken.

JOAN’S BLOG – MONDAY AUGUST 30, 2010 – LOST LOVE AND FUTURE HOPE

In the 3 years since I started this website, I have recommended many books, both Alzheimer’s related, particularly pertaining to Alzheimer marriages, as well as mainstream fiction/nonfiction. Never have I written a blog devoted to one book, but the book I am about to discuss is a stunner, and I would encourage everyone who has lost or is going to lose a spouse to Alzheimer’s Disease to read it. Although I have become acquainted with many authors these last 3 years, I do not know the author of this book, have never corresponded with her, and am not promoting the book for her.

Lost and Found by Jacqueline Sheehan is the story of how one woman copes with the sudden heart attack death of her 42 year old husband. How could that have anything to do with the slow, incremental death of our spouses from Alzheimer’s Disease that we are experiencing? It does because it is about loss, guilt, descent into despair, and the long climb out into the light . It is the story of a woman who could not save her husband, no matter how valiant her efforts; her devastation and guilt over his death; her journey through grief and mourning, and how she and a wounded dog who she is able to save, help each other heal and find joy in life again.

Lately the message boards have been filled with widows, widowers, and those whose fate is to be both, questioning the meaning of their lives. They have questioned whether there is any hope of a life of joy and happiness without their spouse, especially after having been beaten down by years of emotionally wrenching and physically exhausting caregiving. This story is a testament to resilience and hope.

I have been dwelling in the house of depression and despair myself, as Sid’s memory and comprehension decline. I have been feeling angry and cheated out of our life together. And guilty. I have been feeling guilty that I am planning a life for myself without him. After reading Sheehan’s book, I have come to the realization that everything is a process. If I survive caregiving, I will go through the grieving process as did Rocky, the main character in the book, and I will come out into the light, as did she and her dog, Cooper.

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – THUR/FRI, AUGUST 26/27, 2010 – AD AND COMPUTERS DO NOT MIX!

My husband never got the hang of computers. Odd for someone who was electronically savvy, and knew how every piece of electronic equipment from 1964 -2004 worked. When he was forced to manage and order his inventory, as well as handle all of his business operations by computer in the mid to late 1990’s, trouble began. In hindsight, I believe that is when AD started brewing. He never seemed to remember the steps in running through his programs. He never seemed to remember how he ended up where he was in a program or how to return to where he had been. I found it annoying, and could not figure out what his problem was.

For at least the last 10 years, he has had a laptop computer, which he uses to read and send e-mail and surf the web. That is basically all he does with the computer. At one time I had installed a few hand/eye coordination and word games, but many viruses later, they were never re-installed. His e-mail password is set to load automatically, because he cannot remember it. He knows how to find websites in his “favorites”, and he is able to click from one website to another.

At one time, he caused me enormous aggravation and time consuming repair work by clicking on every message and download that came across the screen. I would look at his desktop and see various odd looking icons, and wonder how they appeared there. He had been downloading every adware, spyware, and program that popped up. Until recently, he remembered my admonishment NOT TO CLICK ANYTHING. A box would appear on the screen, and he would call me to make it go away, rather than clicking it. Good job.

Over the years, I have listened to other wives scream in frustration at the amount of times their AD husbands messed up the computer so badly that it had to be sent out for repair. I was luckier than they were. My husband remembered not to click those bouncing little icons and boxes. Not any more.

Click, click, click, click. Icons all over the screen. Programs freeze constantly. When it does thaw out, due to my machinations that can take hours, everything runs at the year 1980 speed. His laptop is very old in computer years, and I already spent $250 for a new hard drive a few weeks after its one year warranty expired 4 years ago. I have no intention of putting more money into it, so I am looking for a new or refurbished one. He then tells me that he needs a computer that has a LOT of hard drive space and memory. Oh, and he needs a BIG screen. None of those 10” $300 cheapies for him!

I started to reason with him that he reads e-mail and surfs the web – he doesn’t NEED an expensive computer with all of the bells and whistles. I quickly regained my sanity, and told him I would buy him a new computer when one went on sale that I could afford. That is all the information he needed to know. As long as it works smoothly and gets him from his e-mail to websites without freezing up, he doesn’t have to know how much hard drive space and memory it has.

In the meantime, I am putting a big sign on the keyboard, so he sees it every time he opens up the computer. DO NOT CLICK OR DOWNLOAD ANYTHING!!!! I sure hope that works, because I am getting very tired of cleaning up computer messes.

Message Boards: Joan's Thursday Blog - AD and Computers Don't Mix

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – WEDNESDAY, AUGUST 25, 2010 -SEPARATING HUSBAND BEHAVIOR FROM ALZHEIMER BEHAVIOR

It did not take me 40 years of marriage to realize that husbands have certain behaviors that are natural to the male species and excruciatingly aggravating to wives. I had it down pat by the first 10 years. This “husband” behavior before AD makes it somewhat difficult to separate it from AD behavior. In the interest of fairness, I will admit that wives also exhibit behaviors that are akin only to the female of the species, and drive husbands to distraction. Husbands can feel free to respond to this issue from their perspective.

Here are two of the BEFORE AD conditions that cropped up quite early in my household and those of almost every wife I have come in contact with for the last 4 decades. It seems to be universally understood that when wives ask for help around the house, they mean NOW, but are flexible enough to accept TODAY. Husbands, however, seem to think SOMETIME THIS YEAR is perfectly acceptable. The scenario in my house, before AD, was this: If Sid was sitting in his recliner in the den watching TV, and I put a laundry basket full of towels in front of him, asking him politely to please fold them, I can give you 100% assurance that the unfolded towels would still be sitting in that basket the next day, the day after, and every day until I asked again, perhaps not so politely. The answer was always the same, “I’ll get to it. Why does everything have to be done NOW?” The situation was the same for every chore I asked him to do. Finally, after a week or two, he would grumble, complain that I was nagging, couldn’t wait, always needed things done right way, and he would complete the task. This included anything from something as simple as changing a light bulb I could not reach, to as complicated as setting up a piece of electronic equipment (his professional field).

The second "before AD" scenario was this: Having been raised by grandmothers who tripped over themselves waiting on him, as they had done for their husbands and sons, he grew up thinking that waiting on a man was a woman’s natural job. As did many men of his generation. (Oh, the shock the poor man received when he married independent feminist me.) But he always, always asked me to do something for him before he did it for himself. Another ingrained husband behavior.

Fast forward to our life now well into the AD trenches. One day last week, I took two of his shirts out of the dryer as soon as they were done, so they would not wrinkle. I carefully placed them over a chair in the den where he spends 16 hours a day sitting with his booted broken foot elevated. Since I was in the middle of doing other laundry and another three tasks at the same time, I asked him to please hang his shirts up in his closet which was 3 feet away from him – easily navigated with his walker. “Okay, no problem”, he answered cheerfully. The next day, I asked him to PLEASE hang up his shirts. He grumbled, “ Why does it have to be now? I’ll get to it.” For the next two days, I politely asked again. “Oh, I’m sorry. I’ll do it later.” was the answer. Finally on the 5th day, when I reminded him again, he was apologetic and upset when he answered, “I’m really sorry. I didn’t mean to upset you. I keep forgetting.” He then ate breakfast, made a salad at my request, and went into the den where the shirts are, to read the paper. He never hung up the shirts.

Now that he has difficulty doing physical AND mental tasks, he immediately asks me to do them for him, just as he expected his grandmothers, and me when were first married, to do, long before AD entered the picture. He almost never tries on his own first. But when I am not here, some of those tasks he does himself just fine, such as remembering on his own to check his glucose levels and warm up his lunch.

Which brings me back to my original query. How much of his forgetfulness and requests for help is Alzheimer’s Disease, and how much is ingrained Pre Alzheimer’s Husband behavior? Everyone is different, but in my house, with my husband, I am convinced that his initial response of “later” to a request for household chore assistance, and his initial expectation for me to figure out everything for him, is ingrained husband behavior. He ALWAYS has and still does say, “Later, when I get to it.” If he does not do it immediately, I am coming to realize that it then becomes true Alzheimer behavior, because he does completely forget.

Before you write to me and tell me to let go of something as idiotic as hanging up shirts, I need to emphasize that in 99% of the cases, I do everything myself, pick up after everything he forgets, say nothing, and let go of all the “small stuff.” It’s easier and more efficient. I only let the shirt incident go five days because I was so busy. I am going to hang them up when I finish this blog.

I am in favor of encouraging those with AD to do as much for themselves as they are able while they are able. The issue of “husband behavior” vs. “Alzheimer behavior” makes determining what they can and should do on their own a bit confusing.

Do any of your spouses exhibit behaviors that cause you to question whether it is Alzheimer related or decades old pre conditioned “spouse” behavior? Husband OR wife behavior. Message Board Topic: Joan's Blog - Husband Behavior vs. AD Behavior

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – MONDAY, AUGUST 23, 2010 – THE ADVANTAGES OF LIVING IN A SPECIAL COMMUNITY

In a few weeks, it will be one year since I moved to the Independent Living Villa neighborhood that is attached to an Assisted Living Facility. For those new members who are not familiar with my move, please refer to these blogs (#411, #420, #424,) You know that I did it “sooner rather than later” because I knew I would continue to need more and more help. Last year, I had NO IDEA that I would also be moving my father down here to live in the ALF. Although I am 20-25 years younger than anyone who lives either in the villas or the ALF, it was the best move I ever could have made. Let me relay an incident that happened on the Friday from Hell to illustrate how important this move was for me, and hope it will convince those of you who are considering it, to give it serious thought.

As I mentioned in Friday’s blog (see below), my AD husband was going to stay home, broken foot elevated as it has been for 9 weeks, while I took my father to my lawyer to sign some papers, and then out to lunch. Sid was all set up in the den with his drink, tv remote, walker for the bathroom, and telephone. I planned to be gone for about 3 hours. If he needed help, the ALF would send someone over to see to it, but I often leave him for that amount of time with no problem.

I called the ALF, told them to have my father ready, cleaned, dressed, and waiting in the lobby at 11 AM. I drove up, and there he was . I wheeled him to the car; helped him get up; held onto him while he pivoted and schooched himself into the car. Drove 1 ½ miles to the lawyer’s office, helped him out of the car, into the wheelchair, and into the lawyer’s office. We were there for about 30-40 minutes, while she explained all the paperwork and got the needed signatures. I wheeled him out to the car, opened the door, helped him up, and that was the end of that! His feet would not work. He could not pivot. He could not stay up. Nothing. We tried for 20 minutes in 95 degree heat, and nothing.

I wheeled him back into the air conditioned building, and thought, “Well, now what?” Oh, but that is when I realized we lived at The Palms for a reason. I called the front desk receptionist, who knows me extremely well by now, and said, “HELP!!!!! We’re stuck.” I explained the situation, asked her to send the driver and their bus with the wheelchair lift to rescue us. The driver called me, (who I also have come to know very well this past year), and said he would be there as soon as he finished the maintenance he was working on. I then called Sid to tell him what was going on, so he would not worry that we were so late. He was fine – sitting in the den watching TV. 30 minutes later, the driver and the bus were in the parking lot. He lowered the lift, wheeled my father on, and up he went into the bus. I told the driver that I would meet him back at the Palms, after I picked up McDonald’s for my father. He said to me, “No. You need a break. Go home. I’ll take him to McDonald’s and bring him back.” I felt as if the world had been lifted off of my shoulders. I called Sid again to tell him I was on my way home. After coming home and checking on him, I went to the ALF, and there was my father, up in his room, happily eating his hamburger and French fries.

Since this incident convinced me that I was NEVER driving my father ANYWHERE ever again without help, I went to the front desk, and scheduled the bus to take us to his doctor’s appointment this week. The doctor is literally around the corner, but I am not taking any chances. If Sid is incapacitated much longer, I am going to schedule the bus for his doctor’s appointments also, because my shoulders and back are being destroyed by lifting his lightweight wheelchair in and out of the back of the car.

So for those of you considering moving to a community like mine, let me tell you the help I have received in just the last 3 months:

PT, OT, and Speech is on the premises – actually across the street. The PT came to my house, wheeled Sid across the street and back home for all of his sessions.

Either the PT or OT, whichever one happened to be working with my father, has wheeled him here to visit, so I did not have to go get him.

I have had a light bulb go out, a cabinet door come off of a hinge, and the air conditioning break down. One phone call, and within a day, a maintenance man has come in, done what needed to be done, while Sid and I watched.

When Sid needed a home health nurse for whatever medical reason, I called the ALF, and they arranged everything. The nurse called, told me when she was coming, and showed up.

Every Friday morning, the OT runs a water aerobics class for any resident who wishes to participate. The pool is 30 footsteps from my front door.

The most important part is that the ALF has a dementia unit, so when the times comes for Sid to need it…………or should I say when the times comes for ME to need it FOR him, it will be there.

The administration is always asking me what they can do to help me, since they know I am caring for two now.

I suppose if one has the finances to afford to call in maintenance, medical, and transportation help and pay for it whenever they need it, being on your own in a home with no mortgage may make sense, but for us, who had a high upside down mortgage, and no finances, this was the best decision I have made in years (#449).

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – FRIDAY, AUGUST 20, 2010 – EMPATHY FROM MY AD SPOUSE

As spouses of Alzheimer patients, some of our deepest sadness comes from our spouses’ loss of empathy for us. As they regress farther back into the child developmental stages, they seem to hit the ME ME ME stage and stay there. Everything is about them - their wants, needs, and interests. Our emotional and physical needs for companionship, conversation, rest, and sleep, become secondary to their needs. They live in their own world, and react to how experiences affect them, not us or anyone else around them.

For the last few years, my husband has been sinking deeper into the ME stage. Although he has been calm and loving for almost a year, he still has no concept or memory of how his desires supersede mine. If I was too tired to go to a social event, meeting, store, or anywhere else, he would pout and complain that HE wanted to go. Therefore, we went. He could not understand how I could be tired.

This changed when he broke his foot and my father came to live in the ALF next door. He has no concept of the abstract, but he does have a grasp of the concrete. If he can SEE it with his own eyes, he understands it. Thus, he has seen me running myself to utter exhaustion between waiting on him all day, and just as I sit down, being called to run next door to handle an issue with my father. This has been going on for 9 weeks. Sid’s foot is not healing well, and my father is too old for things to be going smoothly with him. I am worn to a frazzle, and have been sick twice in the last month because of it.

On Friday, I have to take my father to my lawyer to sign important papers. Although the lawyer’s office is one mile down the street, just getting him out of his wheelchair into the car, me lifting the wheelchair into the back of the car, then getting him out of the car back into the wheelchair, into the lawyer’s office, repeating the steps again, and again when I take him out to lunch, is a feat of monumental proportions. Now add Sid to the mix. I certainly did not want to leave him out of a lunch date. However, taking him means another wheelchair, more lifting, taking them one at a time into and back out of the restaurant.

On Thursday night, my AD husband, who forgets 95% of what is said to him within 5 minutes; cannot follow a plot of a TV program or movie, unless it is basic and simple; and processes information at a snail’s pace, demonstrated to me that he still is capable of loving empathy. He said that taking him to lunch was too much for me. He didn’t want to see me do all of that work; that I was already worn out; and it wasn’t important for him to go to lunch. Those few words melted that heart of mine that I was sure my defense mechanisms against Alzheimer’s Disease had turned into a chunk of ice.

Yes, he will continue to decline. The end will not change. But every once in awhile, the person he was shows himself, and what a joy it is when it happens.

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – WEDNESDAY, AUGUST 18, 2010 – A SHOCKING REALIZATION FOR ME

Something happened to me recently that sent shock waves through my system. I received an e-mail advertising an AARP 50+ three day Weekend Extravaganza in Orlando, Florida. There are going to be renown speakers on lifestyle, finance, health, and humor – Dave Barry, James Carville, Mary Maitlan, Larry King, and more. There are going to be three nights of Baby Boomer entertainment, including Gladys Knight, Judy Collins, Crosby, Stills, and Nash, Richie Havens, and more. There are day trips to the Orlando area attractions. It sounded like a wonderful experience, and I wanted to go. That is what shocked me. I wanted to go. It never occurred to me to include my husband, soul-mate, and constant companion of 40 years. My first thought was not, “Wow, won’t we have a ball together. Let’s make reservations.” No, my first thought was, “How can I take him? I would not mind pushing him in a wheelchair, if I did not have to be his “mother” for 3 days; if I did not have to tell him what we were doing, when we were doing it, what was going to happen, explain everything to him, have him forget where we were going, and have to explain it all again, remind him to take his pills, and on and on and on.

I truly was stunned when I realized that I, who had never, for 2/3 of my life, considered going anywhere on vacation without my husband, did not give a second thought about going alone. I knew I would have more fun, relaxation, and enjoyment, if I did not have to worry constantly about taking care of his needs every minute.

Was this an “advancement” for me? Was I “graduating” to a new understanding and acceptance of our AD situation? Was I putting my baby toe into the “independent waters” that will be my future home and lifestyle? Or was I being a selfish witch, thinking only of myself, and leaving him in the dust?

I am not sure of the answers. The revelation is still so new to me. I honestly cannot figure out if it is good or bad. Maybe a little of both. For a variety of reasons, I decided not to go with or without him, but the realization of my “alone” thinking is weighing heavily on my mind.

What about you? Have any of you had this type of revelation? How do you feel about it? Please post your comments and opinions on the Message Boards - Joan's Wed. Blog - A Shocking Realization For Me.

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – MON/TUE, AUGUST 16/17, 2010 – PART II of the Ten Absolute ‘NEVERS’- DO THEY FEED DENIAL AND ENCOURAGE EMOTIONAL DIVORCE IN THE EARLY STAGES?

Thank you for your thoughtful responses on the Message Boards to Part I (see below this blog), while I recovered from my Tramadol reaction.

Although everyone is aware that my blogs are my opinion, and only my opinion, I want to reiterate that point here, as what I discuss today is subject to a multitude of differing opinions, which I welcome. It is also extremely important to keep in mind that what I write refers to the EARLY STAGES ONLY. I emphasize that because in the early stages, sometimes before the definitive Alzheimer’s diagnosis, and even for awhile afterwards, it is still possible to maintain a close marital relationship, before there is nothing left but caregiving and memories of a long ago marriage.

Following some of the Ten Absolutes (see below this blog) may have the effect of feeding your AD spouses’ denial, and placing you firmly in the “emotionally divorced” category, a situation that I do not feel is necessary in the early stages. When reasoning, arguing, and remembering, are still possible under certain circumstances, if you stow them away too quickly, I feel that you will be losing opportunities for a bit of normalcy before there is none at all.

I do not have to speculate on this. I have specific examples from my own experience.

NEVER REASON/ARGUE – At this point in our journey, I no longer try to reason with my husband. It cannot be done. But in the early days, before the diagnosis, and for about a year afterward, I learned that I could not reason with him in the heat of the moment. However, if I waited 24 hours for what I called the “Alzheimer Swelling” in his brain to revert to somewhat normal, I could explain what we had discussed; his reasoning; my reasoning; and he was able to tell me that whatever he said during the previous discussion was not what he meant. He was then able to tell me in a much more reasonable manner what he did mean. It had the effect of bringing us closer, in that we seemed to solve a problem together.

NEVER SAY “REMEMBER” OR “I TOLD YOU” – This is where I think feeding their denial comes into play full force. In the beginning, when both you and your spouse are trying to work together on finding solutions for remembering tasks and appointments, if they don’t KNOW they forgot something or asked the same question an hour before, and they are not told so, it allows them to deny there is anything wrong with them. In our case, my husband knew he was forgetting tasks and conversations, and specifically asked me to help him with memory strategies. For about 3 years, the notebook and lists worked well. He felt that he accomplished something positive whenever he was able to follow the list and cross off a completed task. It made me feel good to be helping him. Somewhat different team dynamics, but we were still a team. He requested that I tell him if he asked a question previously. He wanted to try to remember it, and he liked the little “hints” that I gave him to jog his memory. He felt that he could “keep it together” longer this way. Teamwork. It allowed us to both still feel connected.

Those are the four NEVERS that I feel have some leeway in the early stages. I am always looking for ways to preserve the relationship for as long as possible, and for awhile, my strategies worked for us.

As I was writing this, I noticed that Rachelle posted on the message board – “BUT at the same time, because I use more of the second column responses, my hubby isn't facing the fact that something is the matter. So sometimes I do try to reason or argue or say I told you already . . . otherwise he feels all is well and nothing is the matter. Which doesn't help when the family doctor tries to bring up the possibility of some cognitive changes----hubby is sure all is just quite fine.” Do any of you feel the way Rachelle and I do concerning the denial? Please continue to post your opinions and responses on the message boards under The Ten Absolute Nevers.

COMING UP ON WEDNESDAY: A Shocking Realization for Me

Feedback to joan@thealzheimerspouse.com

JOAN’S WEEKEND BLOG –, AUGUST 14/15, 2010 – PART 1 of the Ten Absolute ‘NEVERS’ for Caregivers

My plan was to list these Ten Commandments for Alzheimer caregivers, which come directly from the Alzheimer’s Association; to write a blog about the effects of certain ones on our spouses’ denial of their problem; and how it affects our relationship in the early stages.

Unfortunately, my plan has been severely hampered by pain medication the doctor gave me yesterday. I am in a stupor, which is fogging my thought processes and writing ability. So while I sit here waiting for the effects to wear off, as I will never take this medication ever again, I am going to simply list the Absolutes, and hope you will think about them over the weekend. By Monday, I should be able to write Part II of the blog, which will elaborate on the issue I take with some of these rules when the spouse with AD is in the early stages.

TEN ABSOLUTES FOR CAREGIVERS

NEVER ARGUE – instead – AGREE

NEVER REASON – instead - DIVERT

NEVER SHAME – instead - DISTRACT

NEVER LECTURE – instead - REASSURE

NEVER SAY ‘REMEMBER’ – instead -REMINISCE

NEVER SAY ‘I TOLD YOU’- instead - REPEAT, REGROUP

NEVER SAY ‘YOU CAN’T’ – instead - SAY “LET’S DO THIS”

NEVER COMMAND/DEMAND – instead – ASK/MODEL

NEVER CONDESCEND – instead – ENCOURAGE/PRAISE

NEVER FORCE – instead - REINFORCE

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – WED/THUR, AUGUST 11/12, 2010 – ANOTHER LOOK AT FINANCIAL STRESS

Alzheimer’s care is expensive to the point of bankruptcy. A year ago, I wrote a blog, which I am reprinting for those who have not seen it, about the toll financial stress can take on us, and what to do about it. In the past year, more jobs, home equity, and investments have been lost. Many of you have escaped the financial devastation, and are fortunate enough to be able to pay for in-home health care, nursing homes, assisted living facilities, and whatever care your spouse needs. Just as many are in deep financial distress, and can barely afford their living expenses, never mind home health aides. Thus, they are doing the job themselves – 24/7 lifting, bathing, changing, cleaning, watching, feeding, of an infant, who happens to be the size of an adult. It will kill the caregiver sooner than Alzheimer’s Disease will kill the patient.

There are three different issues involved here:

Procuring FREE help from friends and relatives –click the link to read the blog

Finding resources to pay for help

Relieving your stress concerning the finances

I have been on both sides of the financial fence, now always one step away from the abyss. I know what financial stress can do to a person, and it is not pretty. Please read the blog below and add your own advice on the message boards.

JOAN’S BLOG – REPRINTED FROM WED/THUR, AUGUST 26/27, 2009 – FINANCIAL STRESS AND ALZHEIMER’S DISEASE

We are surrounded by reports that the physical and emotional stress of caring for a spouse with Alzheimer’s Disease will kill us. Two years of blogs and message board posts in which we have opened up our innermost thoughts, fears, anguish, guilt, and emotional pain to one another attest to the extraordinary stress under which we live as we watch our loving spouses fade away to Alzheimer’s Disease.

During the course of our lives, many of us have faced financial difficulties. I am not speaking of “belt tightening”, as in cutting back from eating out four times a week down to two times a week. Nor am I speaking of buying a less expensive car, or cutting summer vacation down from two weeks to one. I am speaking of financial disaster, as in living from paycheck to paycheck, then losing your job altogether. I am speaking of having no money to pay essential service bills, such as phone and electricity, and having no money to pay the mortgage or rent when it is due. This type of financial stress will cause insomnia, anxiety attacks, deep depression, desperation, and often an inability to function on a daily basis. Having been up and down the financial ladder many times in almost 40 years of marriage, I fully understand the trauma of lying awake at night, trying to figure how to turn $50 into $5000, and getting up in the morning to the same anxiety. It never leaves you. The constant worry is with you every minute of every day.

Now imagine the “Perfect Storm”. Alzheimer’s Disease AND a financial calamity. I am aware that many of you are facing this catastrophe, and are stressed to the breaking point because of it. How to keep your home, care for your spouse, pay for help to care for your spouse. What will happen to my spouse if we lose our home? How will we cope? The worries and stress are endless.

Please take a deep breath and listen carefully. There is help out there if you look hard enough for it. In ALL cases, no matter to whom you speak about financial problems, ALWAYS tell them about the Alzheimer’s Disease complication. It has been my personal experience, and the experience of many acquaintances, friends, and relatives, that it is an “advantage” in getting you the proper advice, assistance, and leniency, more quickly than you may have gotten otherwise. I would strongly advise DO NOT GO IT ALONE:

Free legal consultations- most foreclosure and bankruptcy lawyers offer 30-60 minute FREE consultations. It is their job to know what course of action to take, and to advise you accordingly. Many will stop the harassing phone calls, and place collections on hold with a small retainer. (Which you can borrow from a friend or relative if you have a willing one.)
Local and Federal Congressman/woman – I understand that you may be surprised and skeptical at this one, but your congressman/woman can barrel through red tape much faster than you and a frustrating voice mail system. In many smaller towns, representatives are personally familiar with their constituents, and are very willing to help.
LOCAL Alzheimer’s Association – They know what financial assistance is available in your area, and they can connect you with the appropriate Medicaid, respite, and financial assistance agencies that can figure out to which assistance you may be entitled.
LOCAL Veteran’s Administration – Contact the Veteran’s Service Representative in your county. They are expert in finding financial assistance for Veteran’s, including disability pensions, medical care, respite care, and even much needed home repairs
Medicaid – Medicaid is a Federal Program, administered by the States, which complicates matters, because each State has its own rules and criteria. Since you are in financial straights, it is unlikely you can afford to hire an agency that guides you through all of the bureaucracy, but remember – FREE SEMINARS. Ask the Alzheimer’s Association for names of these companies; call them; and ask for either a free consultation or the time and place of their next free seminar.
Food stamps – These programs were put into place to help those in need. YOUR tax dollars have been paying for them. USE THEM if you need them.
Free medical clinics- Most of you and your spouses are on Medicare, but for those who are too young, and do not have health insurance, use the clinics. They are there for those in need, and currently, you are in NEED.
Utility hardship assistance – Many electric and gas companies have programs to spread out or reduce payments in case of hardship. Call and inquire. This is another case in which you must be sure to mention Alzheimer’s Disease
Religious Community – Contact your place of worship and inquire about assistance they offer. Every denomination of which I am aware has safeguards in place to help their parishioners.
Food banks – Maybe you have volunteered or contributed. Now it is your turn to receive the help.
BEWARE OF SCAMS. DO NOT RESPOND to the mail solicitations that offer debt reduction/consolidation, foreclosure assistance, bankruptcy protection. Most are carefully worded to lure you into thinking they are part of the government stimulus package. If you look very carefully at the fine print on the bottom, you will see that they say they are not affiliated with any government program. If you want information about the government stimulus package, CALL YOUR LOCAL CONGRESSMAN/WOMAN.

You lose enough sleep caring for your AD spouse. Please do not lose another night’s sleep over financial difficulties. Get on the phone. Make the calls, and get the help you need. Once you have a plan in place, the heavy bricks of financial stress will be lifted from your shoulders, and you will be better able to cope with both Alzheimer’s Disease and every other aspect of your life.

JOAN’S BLOG – MONDAY, AUGUST 9, 2010 – CHANGING THE WAY YOU RELATE TO YOUR SPOUSE

Today’s blog was prompted because of a discussion on the message boards that I answered, but felt everyone whose spouse has been newly diagnosed could benefit from a more lengthy response. The discussion was started by a member who was trying to reason with her husband, diagnosed with MCI (Mild Cognitive Impairment) concerning buying property.

Recently, I heard someone say, after only 40 minutes of listening to advice by veteran AD caregivers, “ So what you are telling me is that I’m the one who has to change because she cannot?”

Holy &*^%$#, I thought. I must be one slow learner. It took her 40 minutes to get what it took me 2 ½ years to finally come to terms with. Her swift understanding may be due to the fact that she was dealing with a parent, not a spouse. Changing your entire way of relating to a spouse is not only difficult, but heart wrenching, as each change erodes a piece of a long term, loving relationship. As I always say, “It’s different when it’s a spouse.”

I remember being angry with my social worker in the beginning, because every time I lamented over Sid pouting or throwing a tantrum, she would say, “Walk away. Ignore him.” I wanted to scream at her, but I more or less politely, voice breaking, said, “You don’t understand. He is my husband. I don’t want him to be hurt; We always talked things over and compromised our differences. I can’t walk away. He’s not a child. He’s my husband. If I walk away, part of our relationship will be destroyed.”

The social worker and all of those Alzheimer care giving friends who were farther along on the journey than I, tried to tell me that I had to change my way of relating to and dealing with him. I had to live in his world now. I had to understand how his brain was working. I had to give up and let go of our previous “partnership” relationship. It took me FOREVER to take that advice, and I only took it when Alzheimer’s Disease threatened to destroy my physical, mental, and emotional health. It had beaten me down and won. I either became the caregiver, not the wife, or I was going to end up in a padded cell from stress, anxiety, and a broken heart.

One of the most difficult lessons I had to learn, is that no matter how functional and normal they appear, their brain is damaged. Some days they may seem to have it all together, and be able to find the tax receipts, balance the checkbook, and appear to make a rational decision. Just as quickly, the circuits in their brain can misfire, and they become confused, cannot organize paperwork, and cannot make a rational decision. You CANNOT allow yourself to be fooled on the good days. Once their brain is impaired, it is not going to miraculously heal itself. You are going to have to be in charge of ALL decisions – financial, medical, family, safety, EVERYTHING.

That said, I also believe that no matter what a spouse is told in the beginning, they will come to terms with changing the way they relate to their AD spouse when they are ready. Some will “get it” sooner than others. I have a friend who went through her own stages rather quickly – denial, education, acceptance, and changing the way she related to her husband, all in less than a year.

Then there are those like me, who hold onto the past, make every futile attempt to bring back the spouse that was, and finally give up when we are so physically and mentally exhausted, we have no choice.

I am hoping that most of those dealing with a new diagnosis who are reading this, will come to terms with the “new” spouse sooner rather than later. It will make life easier on both of you.

I urge everyone whose spouse has been recently diagnosed with either MCI or AD, to read two of the best resources you will find anywhere, on the left side of the website- Understanding the Dementia Experience by Jennifer Ghent-Fuller and for those dealing with Young Onset – Early Onset Dementia, A Practical Guide.

Feedback to joan@thealzheimerspouse.com

JOAN’S BLOG – MON/TUE., AUGUST 2/3, 2010 – GUEST BLOG -The Art of Connecting: How art can help you create meaningful moments by Raquel Farrell-Kirk, Certified Art Therapist

I am pleased to introduce our latest guest blogger, Raquel Farrell-Kirk. Raquel has worked as an art therapist for nearly ten years. She discovered, while working in dementia specific day care centers, that her passion is using art to create meaningful connections with those with dementia. Bringing art into their days and their lives lets them express themselves, share their strengths, and know the joy and satisfaction of creating.

After working with populations ranging from special education students, to adults and adolescents in substance abuse programs and psychiatric hospitals, Raquel has chosen to focus exclusively on those in the early to middle stages of dementia and their caregivers by launching her private practice, Drawing on Strengths. It is the only dementia-specific art therapy private practice in South Florida.

Raquel is a professional member of the American Art Therapy Association and is credentialed by the Art Therapy Credentialing Board as a registered and board certified art therapist. She is also the current Program Chair for the American Art Therapy Assocation’s annual national conference and current President of the Florida Art Therapy Association.

The Art of Connecting: How art can help you create meaningful moments by Raquel Farrell-Kirk, Certified Art Therapist

If you have ever watched a toddler scribble joyfully, or seen a young child beam as his masterpiece is added to refrigerator art gallery, you have witnessed the power of art as a vehicle for self-worth. Ever stood mesmerized by a painting or been amazed by those beautiful photo slideshows friends email you? Then you have experienced art as a magic carpet that momentarily whisks you away. You may even have seen documentaries about events such as the bombing of Hiroshima, and witnessed artwork spontaneously created by survivors. More recently, you may have seen the images many children created after the attacks of September 11th. That is art as self-expression, art as healing, art as a language when words fail us.
For all these reasons, art is a valuable tool for you as a caregiver, and for your spouse living with dementia. Art used for healing, art therapy, is a formalized field of study based on the idea that the creative process is life-enhancing (www.arttherapy.org).

When used with people with dementia, art can have many benefits, such as:
1)      Providing cognitive stimulation
2)      Creating the opportunity for the person with dementia to experience success
3)      Providing sensory stimulation
4)      Encouraging abstract thinking, planning, sequencing and practice of motor skills
5)      Creating opportunity for interaction (via collaborative art projects, discussions)
6)      Improving communication by using non-verbal communication through art and images
As a spouse of someone with Alzheimer’s, you have a unique perspective on your loved one’s illness, as it takes its toll on this most intimate relationship in particular ways. You may feel like you are experiencing the loss of a lifetime of shared memories, many of which are fundamental to the feeling of intimacy and shared history that is the basis of your marriage. I would like to offer an art activity that can provide the benefits listed above, and tend to those shared memories.

In my experience, pictures often elicit strong responses from people with dementia, of all stages. Often, even magazine images (rather than actual personal photographs) can be viewed as triggers for related memories.

Try spending a few afternoons with your spouse to create a collage of the “Memories of our Marriage”.

Materials: Glue, scissors, magazine images or photos, scrapbook or construction paper/poster board
I suggest jumbo glue sticks (easier to hold), and the ones that go on purple and dry clear (easier to apply as the glue remains visible). You may also want to get a pair of safety scissors. Also, it helps if you prepare magazine pictures ahead of time so your spouse is not presented with an entire magazine to sort through. It’s okay to select the ones that you think are most likely to stir memories, but don’t over think it.

Tips: Be sure you have good lighting and all the materials are close at hand. Think of safety also, use non-toxic materials and keep an eye on your spouse.

Directions- Invite your spouse to work with you on a collage. “We have had such great times together that I would like to create a collage full of pictures that can remind us of those times. Let’s choose some pictures together, and glue them on this paper (or in this scrapbook). “

As your spouse selects images, ask open ended questions such as “What did you like about this picture?” rather than asking them to produce specific memories. If you offer praise for their selections or work, make it specific and genuine. For example, “Honey you have such a great eye for detail, look at how carefully you cut out each little flower”, is better than a generic, “That’s great!”

Adaptations- If your spouse is still able to think abstractly you can invite them to help you title the collage, or you can encourage them to use words cut out from the magazine as well to make the collage less concrete (here is a picture of Hawaii, we went there on vacation), and more expressive (this slogan says “You’re in good hands”, that’s how I feel about our relationship).

If your spouse seems overwhelmed by the project, break it down even further. Offer just three to five photos and ask them to choose one that is a favorite. You might say something like “I found some pictures I think you would enjoy looking at. Let’s go through them together and see if we can each choose a favorite one”.

If the first session of art making goes well, you might want to make it an ongoing project. Perhaps you can work on creating an entire timeline of your marriage, or an entire scrapbook. Each time you work, have a specific focus to prevent the project from becoming overwhelming. For example, one day you might work on memories about your courtship, wedding and first home. The next time you might focus on memories about raising your children; the next time on family vacations.

Keep the focus on sharing a meaningful connecting moment with your spouse and your art making will always be a success. “The more I think, the more I feel that there is nothing more truly artistic than to love people”- Vincent Van Gogh.

MESSAGE BOARD: Guest Blog

Visit Raquel's website -Drawing on Strengths

For more about art therapy, visit www.arttherapy.org

Feedback to joan@thealzheimerspouse.com

©Copyright 2010 Joan Gershman
The Alzheimer Spouse LLC
2010 All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken.

RECENT BLOGS:

CarePARTNERS vs. CareGIVERS - Is it possible to be a partner in caregiving with an AD spouse? - July 21/22, 2010

Hurricane Alzheimer - Have you ever noticed how AD is like a hurricane?- July 25/26, 2010

My AD Birthday Card - A card of love from my husband - July 26, 2010

The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.

Custom Search