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JOAN’S BLOG – MONDAY, FEBRUARY 8, 2010 – COMMUNICATION WORKSHOP – HELPING HEALTH CARE WORKERS UNDERSTAND OUR NEEDS

The issue of misunderstanding between caregivers, home health agencies and health aides involved in our spouses’ care has come up under a variety of different discussions on the message boards lately. I thought this was a good opportunity to present an on-line workshop (sorry, no video) on some of the causes and solutions to communication problems. This blog is a shortened version of one of the interactive workshops that I present at conferences and meetings. Today’s workshop deals only with in-home care. Out of home care is a different situation and separate discussion.

Communication is a tricky business. What we hear, process, and understand is often based upon our familial, educational, and philosophical history. If 100 people are in a room listening to the same speech by a politician, educator, health professional, or John Doe, a discussion after the speech by any number of those in the audience will yield exactly that many different interpretations.

This example is not meant to be political – you know I do not get into political discussions on this website, but I am using it because it is such a perfect example of communication based upon one’s history:

Mr. Any President since Harry Truman makes one simple, short statement: I want to reform Health Care. He says absolutely nothing else. Just that one statement. Based upon your political, family, job, medical, and personal experiences, you INTERPRET that statement to mean:

• I am Big Brother Government. I am going to make your health care decisions. I am going to decide whether you live or die. I am going to make you see the doctor I want you to see when I want you to see them. OR 

• Oh, how wonderful. The government is finally going to do something about the Insurance Industry. OR

• This is great. I love the idea of eliminating all insurance companies and letting the government run the show. OR 

• I will need to hear more information before I have any opinion. OR an unlimited list of other interpretations.

It is one statement. Everyone heard the same statement. Everyone interpreted it differently based upon their own personal history and philosophy.

This interpreting of information differently goes on every day in every industry as well as mundane common conversations among friends and colleagues.

Another important fact to remember about communication is that many people are not good listeners. Not only do they have their own agenda and ideas, but they may be distracted by problems and issues that have nothing to do with you. They may listen with “half an ear”, taking in only parts of what you are trying to convey.

That brings us to the conversations we have with health professionals with whom we are entrusting the care of our precious spouses, who cannot speak for themselves. When you are dealing with a Home Health Agency and the aide sent to your home, clear interpretation on both sides is absolutely necessary. This requires a bit of gumption on your part. I used to be meek, but circumstances have forced me to stand up for what my husband needs, and I am not shy about it.

Now the question becomes - how to practice your newfound bravery without appearing antagonistic, angry, or pushy. Having spent my entire adult life in one area or another of Communication Education has taught me a variety of methods of presenting unpleasant information in the best possible light. It has also taught me alternate sweet methods of implying – Do what I want or &%^*#@. Not that we would ever say that to someone with whom we are doing business, but…………….we may have wanted to. Here are some basic communication rules for dealing with the Case Manager in charge:

• Be friendly, honest, and indicate that YOU are the one who needs the assurance and help -“I am so worried about my husband/wife. I have been his/her only caregiver, and I need to make sure that the transition to someone new goes smoothly. We all need to be on the same page to ease my mind.” This should put the person with whom you are doing business in a “helpful”, rather than “defensive” mood, which would occur if you approached them in a more demanding manner. 

• Write down a Care Plan by making your own list of what you want done. Be firm, but make it seem as if YOU are the one who needs the Care Plan in order to keep things straight.

• Make it simple in list form. When it comes to communication, simple and short is best. 

• Go over it individually, face to face, point by point.

• Ask for the person to repeat it. Indicate that this is for YOUR benefit, so the person will not feel that you are being condescending. 

• Ask if they have any questions over what is expected, and alter the list together if necessary.

• Both of you sign it. 

When the home health aide assigned to your spouse comes to the house, have the Care Plan in hand, and go over it with them point by point, using the same pleasant communication strategies outlined above. Explain that you know that BOTH OF YOU are only concerned about the welfare of your spouse, and you want to make sure that YOU have it clear in your mind what is going to be done for him/her. Again, this takes away the person’s defensiveness, and puts them at ease. It does not appear that you are either antagonistic or clueless.

Since it is home health care, you have the option of staying home the first few times to make sure your spouse is being cared for properly. When you return, it should obvious by the demeanor and condition of your spouse if instructions have been followed properly.

If you notice any problems, talk to the aide first, and go over what you feel has not been done to your satisfaction. Follow the calm, polite rule. This will generally eliminate any angry antagonism on their part. Even if they do answer angrily, I have always found that returning angry with calm, polite, sweetness, takes the wind out of the angry sails. They can’t argue with someone who will not argue back. (Also works well with spouses who are arguing irrationally)

If the situation does not improve, call the case manager, and explain calmly which specific instructions are not being followed, and that your only desire is to resolve the situation.. Polite, polite, polite. The time worn adage – “You catch more flies with honey” is absolutely true in communication.

If the case manager does not resolve the situation, even termination can be achieved without rancor. Simply point out (politely and calmly – the two major communication buzz words) that since the plan is not being followed properly, you will have to cancel their services. Thank her/him for their time and service. Why bother being calm and polite when firing an agency? It will keep YOUR stress level down.

As I said in the beginning, this was a shortened, simple version of a longer, interactive workshop. It is, as always, personal advice based upon my professional experience. As is this website’s policy, it is not professional guidance or counsel.

In any case, I hope it has been helpful to you.

Please post comments under Message Board Topic: Joan's Monday Blog - Causes and Solutions for Communication Difficulties

Feedback to joan@thealzhiemerspouse.com 

©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved                                  

JOAN’S WEEKEND BLOG, FEBRUARY 6/7, 2010 –IN HONOR OF THE PASSING OF DAVE HOWE - REPRINT OF HIS ESSAY “LIVING IN AN EVIL FOG”/ARTISTIC EXPRESSION OF DEMENTIA BY WILLIAM UTERMOHLEN

Dave Howe, the husband of our member, Betsy Howe, passed away this week from complications related to Alzheimer’s Disease. Just as Tracy Mobley’s Monday blog (see below), gave us the effect of family denial from the perspective of the person who is living with dementia, Dave’s essay “Living in an Evil Fog” gave us his perspective on living in the world of dementia.

LIVING in an Evil Fog
                                               By David  & Elizabeth (Betsy) Howe
My family and friends ask how I am doing. The answer usually is “fine.” I am doing fine overall. Very few ask what this condition feels like. It feels like living in an evil fog.
A fog is something all can understand. ‘I’ am inside. I can see out. I ‘know’ who I am and what I should be able to do. I ‘know’ what I want to say. But the fog envelops me. It holds me in its evil grasp. It keeps me from doing all I know I could before.
The fog is like a demon from a horror movie. It pulls me deeper and deeper into itself. It pulls me farther and farther away from my ‘outside’ life. It makes my body less responsive and capable. It keeps my thought inside and won’t let me send them out to the world.
The fog never goes away. The fog just sucks me in deeper and deeper, day by day, farther and farther from what should be my life. It’s hard to watch myself leaving. It’s hard for my wife and family to watch me leaving. I know that. I see that.
My wife and I do not dwell on what is gone. We focus on what is left. Much is left. It is comforting to have great friends and family who care. Out friends continue to socialize with us, even though I get quieter and quieter. The right words more often won’t come out of the fog. The fog grabs my ideas as they form and pulls them back into its evil clutches. By then the conversation has moved on without me.
The fog slows time for me and speeds up the outside world. Everything seems to move faster. I seem to keep moving slower. I daily trudge through a fog as thick as molasses. It sometimes gets exhausting and I must take a break with ‘no brain’ things like reading or watching TV, but every now and then even reading or watching TV is exhausting.
Sound depressing? My wife and I are doing great at accepting and not being depressed. ‘What is’ is ‘what is’. I cannot change it. No one can change it. My wife helps me continue to me ‘me.’ She helped me put together this article to share with you.
I hope that as the fog grows denser and pulls me farther and farther away, my friends and family will remember ‘me.’ I hope they will continue to talk to ‘me’ even when they can no longer see the ‘me’ clutched deep within the fog.

Our condolences go out to Betsy and her family.

For another perspective on living with dementia through artistic expression, rather than the written word, please click here for self portraits by the artist William Utermohlen, as he paints his way through his dementia journey. When the page loads, look in the top right corner to advance the pictures. You may also click here for the blog and complete article link.

Feedback to joan@thealzheimerspouse.com 

 ©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved                                   

JOAN’S BLOG – WED/THUR, FEBRUARY 3/4, 2010 – COPING ALONE

Recently I wrote about how I tried to wean myself off of my anti-depressant, which turned out not to be the best idea I have ever had. I started thinking about it, and felt like a failure. After all, my husband’s vile insults, rages, and tantrums have stopped. Our life is as settled as it can be, given the AD circumstances. We have friends and activities. And I have weathered some very serious emotional, medical, and family crises in my life without relying on a pill to get me through. So what is wrong with me now that I cannot handle this situation without that little white pill?

Such a simple answer. Because in all of those other crises, I had a partner to share the burdens. No matter what happened – the cancer death of my mother; financial meltdowns; a seriously troubled teenage son; a life threatening illness – my husband and I leaned on one another and helped each other through. I always knew that no matter what life gave us, as long as he was by my side, we would weather the storm together. It was if we were enfolded in a double sized cloak of love and support. “Us” battling life’s adversities.

Now I do not have that support. My storm shelter has been destroyed by Alzheimer’s Disease, and I am standing alone with the wind and rain pounding me from every direction . My partner cannot help me to cope with the changes AD has brought to him and our relationship, because it is the AD that has rendered him incapable of helping. It is a vicious cycle. A Catch-22, I guess.

We, the spousal caregivers, handle the financial decisions alone; the medication; medical, insurance, home repair, and family decisions alone. It is not that we are not capable of doing so. Of course we are. It is that life is so much sweeter with a loving partner to share the decisions. Instead, we have the added pain of trying to cope – alone - with the dwindling mental and physical capacity of our spouses, along with all the other responsibilities and stress.

That is my conclusion as to why I started to fall apart without the little white pill. Maybe some of you have a different idea on why so many spouses who never needed those anti-depressants before, now cannot function well without them.

Feedback to joan@thealzheimerspouse.com 

©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved                                   

JOAN’S BLOG – MON/TUE, FEBRUARY 1-2, 2010 – MEET TRACY MOBLEY, A SPOUSE WITH DEMENTIA, AND READ HER GUEST BLOG

This is the first in a series of monthly blogs on the view from the other side – the spouse who truly understands the struggle to live with dementia, because she has it. Tracy Mobley was diagnosed at age 38 with Early Onset Alzheimer’s Disease, a diagnosis that has recently been specified to Frontal Temporal Lobe Dementia. Tracy has spent the last 7 years writing, speaking, advocating, and educating people on not only how it feels to have dementia, but how others’ actions toward the person with dementia impact their emotions. She has written a book – Young Hope/The Broken Road, and started a respite camp for children of dementia patients to be able to enjoy some fun and peer support – Camp Building Bridges. It is my great honor to introduce her blog today – Pain of the Heart. It speaks about a subject we have discussed often from our point of view – family denial. Now we are privileged to hear the “view from the other side”.

Pain of The Heart by Tracy Mobley

Family in denial is a very powerful weapon when it comes to dealing with dementia. That is the case in my family. I was diagnosed with Early Onset Alzheimer's Disease in 2002, which was later changed to Frontal Temporal Lobe Dementia by ruling out certain medications and the waxing and waning of certain behaviors.

My family's words to me were, “You're too young to have this disease” and “There might be something wrong with you but it isn't that!” Hearing those words were very devastating to me, not to mention it broke my heart knowing that they were not there for me or my husband and son in time of need. In my mind I felt like they were telling me that I was crazy as well as treating me as such.

I remember a time that the medications became less effective and I became very aggressive verbally and had to be put in the psychiatric unit by my husband. The anger that I felt at him for putting me there was indescribable, but it turned out that the medications that I was on were not as effective and I needed something different. I was only there for three days, three of the longest days of my life!

My Mother has since passed away and I have six siblings left. My heart hungers for their love and attention and most of all them believing I really do have FTD, not to mention we could use their support once in awhile. But once again, they are still in the stage of denial. I have played a pretty good lie these last seven years going on as nothing bothers me because they haven't been there. I have cried myself to sleep many a night wishing they were here for us. I have tried educating them in every way that I know how. I have sent them information from our local Chapter, I have sent them doctor's notes. I even wrote a book, Young Hope The Broken Road which can be found on Amazon. The purpose of the story was to hopefully help my family believe in my diagnosis and how much they were hurting me by ignoring the facts. There is a specific chapter in the book titled, Family In Denial and that was the chapter that I hoped would bring my family closer together, however it only brought much heartache and anger from my family. That turned out to be quite detrimental to me rather than helping my situation as they took the story all wrong. They felt I was badmouthing them, which I was not. I was just trying to get the point across that their denial was hurting me. My book has been known to help many families that are in denial though, so I guess it met its purpose. It just wasn't in the cards for me.

I remember when I was a little girl, my brothers and sisters were everything to me, I looked up to them as they could do no wrong. So strange how youth is blinded. I would never have thought in a million years that I would be abandoned by them. The pain in my heart still hurts for them, because if the table was turned, I know I would be there for them. I guess having loved ones such as family, but yet not having them believe in you, especially in your greatest time of need, is one of the greatest pains of the heart there is.

©Copyright 2010 Tracy Mobley

I thank Tracy for presenting us with her perspective. As I wrote in the blog announcing her addition to the website, I have wanted to offer the perspective of the spouse with the dementia since the inception of this website, but it has been a struggle because most people with dementia have a difficult time expressing themselves. The more we understand their feelings and motivations, the better we will be able to help them and ourselves.

Tracy’s blog gave me a lot to think about. In all the time we have been discussing family denial, it never, ever occurred to me how it would affect the person with the dementia. I was surprised to find out how much it hurt Tracy, and how betrayed she felt. I hope everyone who reads this who has a family member in denial will share it with them. If it brings just one family member out of denial, we will have accomplished something positive.

Please post comments under the message board topic: Tracy Mobley's Guest Blog.

Feedback to joan@thealzheimerspouse.com

©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved

JOAN’S WEEKEND BLOG – JANUARY 30/31, 2010 – THE REBELLIOUS SPOUSE; NOT HIM - ME

Two weeks ago, I wrote about filling out one of those e-mails that ask questions about your life, which prompted me to write the blog “Life in Limbo”. I really need to stop filling out those e-mails. The latest came on Saturday morning – a test that supposedly determines your personality. The instructions were to answer as we are NOW, not how we used to be. Right away, I knew I was in trouble. Here is what my score said about me - “Your friends see you as painstaking and fussy.  They see you as very cautious, extremely careful, a slow and steady plodder.  It would really surprise them if you ever did something impulsively or on the spur of the moment, expecting you to examine everything carefully from every angle and then, usually decide against it. They think this reaction is caused partly by your careful nature. Well, based on the results, I certainly would not want to hang around with a boring fussbudget like myself.

Because I followed the directions (What else would you expect from a “careful, slow, steady plodder?), and answered based on how I am NOW, that test saw the spousal caregiver, the educator, the advocate, the careful planner. What it did NOT see is the rebellious, fun loving, ready for adventure “me” , who is INSIDE the conscientious caregiver. The caregiver “me” has responsibilities, and not only is required to fulfill the needs of her Alzheimer’s Diseased husband, but desires to be with him and do the best for him. 

But the rebel is in there. Yes, she is. The same rebel, who during her college years, played what she and her roommate called the “cloak and dagger” game. We covered for each other with our parents when one or the other took off out of state to adventures with young men. The same rebel who danced the night away until 4 AM on a Puerto Rican beach nightclub  during Spring Break 1968. The same rebel who – let’s just say it involved a motorcycle, late night, and a lake.

Oh, obviously at the age of 61, I do not have the same reckless desires as when I was 20, but I would love to do something impulsive. Take off for a weekend to Las Vegas; ride on the back of a motorcycle; learn to dance something other than the square step waltz; do a Forest Gump and walk away on an adventure.

Alzheimer’s Disease is preventing us from taking off on spur of the moment adventures together, and it is preventing me from doing so by myself. But just as I wish that others could see the man beneath the AD confusion and forgetfulness, I wish they could see the joyous rebel buried beneath my own caregiving face. “Painstaking and fussy” – HRUMPH!

What about you? Is there an adventurer inside your caregiving persona? MESSAGE BOARD TOPIC: Joan's Weekend Blog - A Rebellious Spouse

Feedback to joan@thealzheimerspouse.com 

©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved                                  

JOAN’S BLOG – FRIDAY, JANUARY 29, 2010 – MAINTAINING YOUR SPOUSES’ DIGNITY

In preparation for Tracy Mobley’s first guest blog on Monday, presenting the perspective of the person with dementia (PWD), I have been reading her book – Young Hope, The Broken Road. The theme that keeps jumping out at me most prominently is her desperate need to maintain her independence and dignity as a human being, in spite of an illness that robs her of her memory and judgment.

This is a very tricky balance for the caregiving spouse. WE know our spouses’ limitations, but the disease often does not allow THEM to recognize their deficiencies, thus setting up a power struggle.

Tracy, and most of our spouses (CERTAINLY mine) want the freedom to get into their car and drive themselves wherever they need to go. She, and most of our spouses, want to be included in life decisions that were always made by husband and wife together. We are forced into the role of policeman/woman. We become the “enforcers”, confining them to “house arrest”, waiting for us to drive them where they need to go. We become the “decision makers”, setting up a situation where they feel demeaned because they no longer have a say in family decisions.

Considering the cognitive functions they have lost that are involved in driving (memory, quick decision making, visual perception, processing speed) we certainly cannot allow them to get into a car and risk killing themselves and others. Considering the cognitive functions they have lost that are involved in decision making ( reasoning, judgment, executive function), we certainly cannot allow them to make financial, medical, and life altering decisions. This is OUR perspective.

Imagine the situation from THEIR perspective. How would you feel if every decision from how the money is being spent, to where you will live, to what you are going to do for the day, is taken from you? I am sure I would be angry and lash out at the enemy – my spouse – the one who took these decisions from me.

Is there a solution to the PWD’s desire for independence and inclusion in decision making? How does one balance that desire against the necessity for us to keep them, our finances, our living arrangements, and medical decisions, safe and secure without constant screaming matches and violent eruptions on both sides?

I am not going to discuss the driving issue again – those who are unfamiliar with our nightmare can check the previous blog section of the summer of 2008 for those gruesome details. I am going to concentrate on the decision making.

My husband cannot make a simple decision about when to have dinner, never mind something as important as a medical or financial issue. Below is an example of a typical dinner decision conversation:

J: What time do you want to eat dinner?
S: Whenever you want to eat.
J: Are you hungry now? When do YOU want to eat dinner?
S: I don’t know. I’ll eat when you eat.
J: GRRRR! We’ll eat at 6.

I have solved this problem by offering him a simple choice. Now I say, “Do you want dinner at 6 or 6:30?” After a long processing period, he makes his choice. I feel this gives him a little sense of control.

Of course, we have legal paperwork in place for financial and medical decisions, but he does feel, in his words, “Busted down to Private when I used to be Commander in Chief”, when I make decisions without mentioning them to him. He has enough problems without feeling demeaned at every turn.

I have solved this problem by letting him participate as much as he is able. He has every doctor he visited last year written in his appointment book. He wrote down the mileage from our house to each doctor’s office next to the appointment. Yesterday, he went through that book very carefully, and transferred the mileage to a separate sheet of paper for our accountant to include in our tax deductions. His next job will be to go through the box with all of the prescription receipts and put them in order by date. He is very capable of accomplishing these types of “filing” jobs. It makes him feel useful and included, yet he does not have to make any “decisions” requiring complex cognitive processes.

I use the “either/or” – “two choices only” method quite often now:

Do you want to go to the movies at 4PM or 6PM?
Do you want roast beef or turkey?
Would you like to go to the pool or sit on the patio?

This method serves three purposes. It makes him feel that he has some control over his decisions; it makes it easier for him to decide when only offered two choices; and it takes the stress off of me.

I have not discussed this with Tracy – I am not sure if this is appropriate from her perspective, but certainly will ask for her opinion.

Be sure to log on Monday for Tracy Mobley’s first guest blog from the perspective of the PWD – The Person with Dementia. Her topic will be – Her feelings about family denial.

Feedback to joan@thealzheimerspouse.com

©Copyright 2010 Joan Gershman 
The Alzheimer Spouse LLC
2010 All Rights Reserved                              

 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.           

The Alzheimer Spouse LLC 2009 All Rights Reserved          

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