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JOAN’S BLOG – MONDAY, MAY 21, 2012 – REACHING MY LIMIT

My sister and brother-in-law were here from Chicago for a week, combining a Disney vacation with visiting me, Sid, and my father. They roared in here with strict instructions for me to “stop planning; stop running; stop doing; sit down, be quiet, and let them do everything”. It took me a couple of days, but I finally relaxed and let them take over. As was the case the last two times my sister was here, I watched in awe as they went back and forth between my house and the ALF to tend to my father; did my laundry and shopping; lugged Sid’s wheelchair in and out of the car; picked Sid up from Day Care; brought in “take-out” food one night; cooked another night; took us out to eat on other nights; and cleaned up. They tended to Sid’s needs. I thought – “How do I do all of this?” It’s no wonder I am tired to the core, stressed, and in a perpetually grumpy mood.

Although I have often seen with my own eyes, and been aware of the burden other caregiving spouses carry well beyond their level of endurance, I never thought I had reached that point. After all, I do not have to dress or shave my husband. I need to shower him, but he will not let me. He insists he can do it himself, sitting on the shower chair. It takes 2 – 2 ½ hours for him to shave, shower, and get dressed, but he manages it with a little help. But once he sits down, I am on 24/7 nursing duty. All shifts. All day. Every day. Except the two days he is in Day Care for 5 hours. He does not have a hospital “call button”. He has his mouth. He calls me to get his lunch; help with the remote; ask a question about something he sees on TV; to bring him his pain pill; to fill his drink; to ask where I am; what I am doing; if he has anywhere to go that day; to get his newspaper.

The physical therapist has encouraged him to try to be more independent by transferring from his chair to the walker for support and then to the wheelchair. She wants him to use either his arms or his feet to move around in the wheelchair. It will give him some muscle movement, but will not put stress on his painful knees and neuropathy laden legs and feet. So far, even with my encouragement, he hasn’t used it.

On the days he has doctor appointments, or Alzheimer activities, I am driving, lugging either the walker or the wheelchair; pushing him in the wheelchair; telling him where we are going; what we are doing; and answering the same question over and over again.

When I am tired, and want to be left alone to knit by myself, I am driving to an Alzheimer social event because he wants to go and be with everyone. He says nothing when we are there; sits in a daze, but I feel guilty if I do not take him.

There are other issues with which I have to deal, but I prefer not to write about them, as I feel they are an invasion of his privacy.

The end result of me watching my sister and brother-in-law do my work, and them observing Sid’s mental and physical decline, as well as me looking as if I have been run over by a truck, is that I have reached my limit. I feel quite inadequate, as my limit is not as high as so many of yours, but it is mine, and there is nothing I can do about it. AD has forced me to change everything about myself, from how I deal with my husband, our marriage, my social life, my interactions with people. It has been a long and difficult journey, but I cannot, or maybe just refuse, to keep raising the limit of what I can physically endure.

Both my sister and my son, particularly my son, keep telling me that I have done all I can for Sid, and it is time for me to worry about me. The search for a solution begins this week.

I do wonder how so many of you who have no help manage this job. And are alive to talk about it.

MESSAGE BOARD: Joan's Blog - Reaching My Limit

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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.
©Copyright 2012 Joan Gershman
The Alzheimer Spouse LLC
2012 All Rights Reserved

JOAN’S BLOG – MON/TUE., MAY 14/15, 2012 – BURNOUT!

When browsing through a luxury store, there is a saying – “If you have to ask the price, you can’t afford it.” Simple and true.

Applying that same idea to caregivers, my take would be – “If you are asking if you are burned out and need a break, you do.”

For weeks, I have been exhausted and cranky. Everywhere I turn, either my father or my husband want or need something from me; need to be driven somewhere by me; have medical equipment that needs repairing, need supplies, need, need, need. If my husband is not complaining about being asked to get up out of his chair, he is whining about something else. If I am not ordering or picking up his medications, I am dispensing them. If I am not waiting on him, I am listening to him whine. I realize he is now so physically debilitated by Diabetic Neuropathy causing loss of sensation in his feet, and Alzheimer’s Disease not sending the “move” signals to his muscles, that he requires someone to wait on him. Unfortunately, there are no shift changes here – I work all three 8-hour shifts. It is wearing me to a frazzle and making me short tempered.

As the physical demands of this job increase, I find myself pushing the emotional distress of losing my life long partner to the back of my mind. That part of Alzheimer’s Disease has always been the most difficult for me, but for now, I am so tired, that I have not had time to dwell upon it.

And then, Monday morning, the Cavalry arrived. My sister and brother-in-law are here from Chicago with orders for me to sit and not get up. All I am allowed to do is give them lists of what needs doing. Shopping, errands, laundry, take-out food, wheelchair “schlepping”, Daddy duty, and riding in the passenger seat. While Sid was at his Alzheimer Dominoes game, the three of us were eating lunch in a restaurant, and I felt such a release of stress, that I thought I was going to fall off of my chair.

They picked up a prescription my father needed, brought it to him, and picked up the pizza for our supper. My sister would not let me get up from the table to put ice in the glasses or get the plates. She made me sit. She took out the trash. I sat. I had forgotten what it felt like to have someone else do something, anything.

I am in such desperate need of respite that for the week they are here, I am going to let them do for me whatever they are determined to do.

On Tuesday, they are piling Sid and his wheelchair into the car and driving us all to the Juno Beach Turtle Sanctuary for a fun day out. They will take turns pushing him, while I get to spend the day acting like a regular tourist without anyone to care for.

Before they leave, I will call my case manager and social worker to find out what funding is available for in-home help and respite, because I realize I cannot continue like this or I will end up in the hospital.

MESSAGE BOARD: Joan's Blog - BURNOUT!

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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.
©Copyright 2012 Joan Gershman
The Alzheimer Spouse LLC
2012 All Rights Reserved

MOTHER'S DAY, SUNDAY, MAY 13, 2012 - To all of you wonderful mothers, who are now mother/caregivers to your spouses, I wish you a quiet, peaceful day. I have already spoken to my son in California on Friday and Saturday. On Mother's Day, I hope to sleep late and do nothing. That would make this frazzled caregiver very happy.

JOAN’S BLOG – MON/TUE, MAY 7/8, 2012 – THE STENGTH OF AD SPOUSAL CAREGIVERS

Before I begin, I must thank Brenda Avadian from www.thecaregiversvoice.com and everyone from my website who helped me be recognized as “Caregiver of the Month”.  It is an honor for which I am most grateful, but about which I am honestly bewildered. Friends and relatives have been congratulating me, and telling me how strong I am. This blog addresses the strength of all spousal caregivers.

I fell in love with Sid when I was 21 years old. I married him 7 months after our first date, and stayed in love with him for more than 3 decades. I love him still – Alzheimer’s Disease has changed the love to more of a mother/child type of emotion, but the bond of 42 years is still there. I do not wear myself out trying to make his life as smooth as possible because I am stronger than any other spousal caregiver. I do not do every single physical, financial, and household chore because I am stronger than any other spousal caregiver.  I do not drive him to activities and appointments because I am stronger than any other spousal caregiver.  I do not organize his life, monitor his medications, untangle his confusion, explain information, and answer his repetitive questions because I am stronger than any other spousal caregiver. I do it; we spousal caregivers do it because we love our husbands and wives, and cannot abandon them. We look at them and see the men and women they used to be before Alzheimer’s Disease robbed them of their cognition, reasoning, abilities, and personality. We see them as they were, and it is for them as they were, that we do what we do.

None of us was trained for this job. Not even those of us who were professional nurses, social workers, special educators, physicians, or, in my case, speech therapists. Working with strangers does not prepare us for the emotions involved in caring for our AD spouses. Knowing relatives who have had AD does not prepare us. Nothing prepares us. AD spousal caregiving is the epitome of “on the job training”.

This is the most physically demanding, aggravating, stressful, emotionally draining, and above all, heartache filled job I have ever had. I did not ask for it. I am not working from strength. I am working from love and above all, NO CHOICE. We are not allowed to choose which disease our spouses will get that will be easiest on us. We deal with what we are given. We deal the best way we can. We research; we read; we learn; we ask questions; we gather support from those who are fighting the same battle, and we march on.

I must also say, in all honesty, that I do not do this job without some resentment. There is resentment that my life is totally involved in caring for him, at the expense of my own life and health. There is resentment that there is no one to take care of my physical, emotional, and mental needs, as I care for his. That is the truth that I am sure I many of you share with me.

As for the award, it is yours as much as mine. You are all doing as much, if not more, than I, and every one of you deserve a caregiver award.

MESSAGE BOARD: Joan's Blog - Strength of AD Spousal Caregivers

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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.
©Copyright 2012 Joan Gershman
The Alzheimer Spouse LLC
2012 All Rights Reserved

GUEST BLOG BY MARILYN BLUM - MON/TUE., APRIL 30/MAY 1, 2012

Regular readers of Joan’s message boards on this website may know me as MarilyninMD; I have been a member here since 2008. My full name is Marilyn Blum and for the last 7 years, I have been thrust into the murky waters of AD caregiving because of my husband Steve’s diagnosis of “MCI”, “probable AD” in 2005, at the age of 60.

As Joan explained in her last blog, each year the Alzheimer’s Association holds a 3-day Advocacy Forum in Washington, D.C. that is attended by representatives of each State’s chapter. Everyone who attends either works for the Association, or has a personal connection – usually an immediate family member, who currently has or has died from AD. The main purpose of the Forum is to visit members of Congress and to tell our stories, with the hope of obtaining funding for AD research and services for patients and families.

Prior to attending this Forum, I did advocacy work early in Steve’s diagnosis. In 2007, I was asked to testify at a Senate Subcommittee Hearing in Washington, DC, to help push a bill through for funding for AD research. It was a surreal, exhausting and nerve-wracking experience, but I survived it. The bill did not – it did not pass. Two years later, I went with other caregivers and representatives from the Alzheimer’s Association to Washington, DC to visit members of Congress to try to convince them to allocate funding for AD research. Since I had moved Steve to an Assisted Living Facility in 2011, this year I was able to attend the entire 3-day Forum.

You many wonder – why would she want to do that? It is expensive, exhausting, and let’s face it, nothing much in Washington gets done beyond a snail’s pace. Well, I’ll tell you why – some of you may have read a thread I started recently about building caregiver resilience. One of the tips was to practice re-framing – in other words, making lemonade out of lemons. Not to sound like a Pollyana, but this is what being an AD advocate does for me. One of the most difficult aspects of Steve’s illness, for me, was the loss of control over our lives. Hearing that horrible diagnosis and knowing that there is not a thing I could do to change the outcome. That he was going to die and possibly face a long, slow death process; and that my life would also be dominated, for an indeterminate number of years, with sadness and an incredibly challenging situation that I’d have to handle, virtually on my own and without a shred of hope that the disease’s trajectory could be altered. Advocacy makes me feel that in a small way, I am not accepting this awful status quo and that I’m fighting back. I know that, realistically, my efforts won’t help Steve in his lifetime, but they may help others not yet diagnosed.

I am writing this blog not only to tell you about the Forum, but also, to perhaps interest some of you in becoming advocates in the future. As Joan has suggested, sending your stories in writing to your congressional representatives is a wonderful idea. But I’d also like to plant a seed that perhaps in the “after”, the period when your hands-on caregiving is over, some of you will want to take on an advocacy role and hopefully, ease the burden of those who will be unfortunate enough to wrestle with dementia in the future, as well as their caregivers.

Some of the activities included in this year’s Forum were: training on how to communicate with members of Congress, and what some of the current proposals are. I learned that although the National Alzheimer’s Project Act (NAPA) was passed in 2011, and contains a provision for AD research funding, the funds now have to be actually allocated before anything can happen. The Health Outcomes, Planning and Education (HOPE) for Alzheimer’s Act has been proposed, and would provide sorely needed services for people with dementia and their caregivers. But in this case the ACT itself must be passed and then, funding appropriated.

Of course I was interested in the medical update. To summarize,  in the next 8 months, there will be results available from multiple Phase III clinical trials for new AD medications. Two, the Bapineuzumab and Solanezumab trials, should finally answer the question of whether removal of the amyloid plaques from the brain are positive or negative – a major concern. One interesting point that was presented was regarding the rate of scientific progress in AD research. I don’t know about you, but I’ve been frustrated  by the seeming lack of recent progress. The doctor who did the presentation used the development of statins to prevent heart disease as an example. The relationship between lipids and heart disease was discovered in 1907; yet the first statin drug wasn’t marketed until 1987. Modern AD science started in the 1970’s, so you can see, there is a long way to go before good medications will be in place. He indicated that AD treatment would resemble another complicated disease – high blood pressure. Different medications help different patients. The other point he mentioned was that the new PET scan imaging just approved for use by the FDA will be available July 1. This is a major advance in diagnostics that I think we can all appreciate, as most of our spouses were diagnosed using the “educated guess” or “rule everything else out” method.

One of the highlights was a wonderful dinner, which was hosted by TV personality Meredith Viera (whose brother had an EOAD diagnosis); Maria Shriver presented an award to Pat Summit, the Tennessee women’s basketball coach who recently went public with her EOAD diagnosis; appearances by former Congressman Dennis Moore (Kansas), who recently was himself given and EOAD diagnosis, and the actress Jane Seymour.

Of course, the most meaningful part was the visits to our Congressional representatives. Joan is absolutely right about them taking notice when a “young” diagnosis is mentioned. When I mentioned  Steve’s diagnosis at age 60, there was a distinct reaction from each listener. And one Congressman’s facial expression changed when I answered his question on how old Steve was when diagnosed, and when one of our group told him that his former colleague, Rep. Moore, had recently received a diagnosis. Perhaps this is because the Congressman himself is about 62 – this hit very close to home for him.

Realistically, in these economic times, it’s hard to get money allocated from Congress, no matter how worthy the cause. But in the few years I’ve been advocating, I think I’m seeing a subtle change. As more and more well-known people go public, like Pat Summit and Glen Campbell (who is doing a special concert for members of Congress), and since one of their own, Rep. Moore, has now been stricken, it has to make a difference.

Once our loved ones are beyond the early stage of AD, they cannot take up the cause – we must literally be their voices. Please consider doing what you can to advocate, now or perhaps later on. Believe me, I know that while you are taking care of your loved one at home, even carving out the time and energy to write a letter is a significant issue. I clearly remember six years of putting the non-essentials, including mostly everything for myself, on the back burner. But think about doing it for our children and grandchildren’s sakes, so that someday, they simply will not have to endure the level of anguish that we and our families have, seeing an incurable disease steal away the person we love most in the world, bit by bit, knowing we have to stand by helpless to stop it.

©Copyright 2012 Marilyn Blum

JOAN’S BLOG – TUE/WED., APRIL 24/25, 2012- YOUR TURN TO MAKE A DIFFERENCE

Today, April 24, 2012, is the final day of the Washington DC Alzheimer’s Public Policy Forum. As my veteran members know, I was a Florida advocate to the forum for 3 years in a row. I was fortunate enough to attend the Senate Hearings on Alzheimer’s Disease in which Sandra Day O’Connor, Newt Gingrich, and Maria Shriver, among others, testified. For those 3 years, I and 600+ other advocates from around the country, personally brought your Alzheimer stories and concerns straight to the legislators on Capitol Hill. Speeches, pictures, and information on those 3 years can be found on the left side of the website under DC Forum, on the Articles of Interest page, and by doing a search of my blogs.

Due to my husband’s worsening condition, and the inability to leave him alone overnight, as well as my decreased energy, and increased responsibilities at home, I was unable to attend last year and this. However, one of our members did attend this year, and will be updating us with a guest blog.

Although my veteran members are fully aware of my website political policy, I am stating it here for the newer members. Under no circumstances do I allow any political discussions on my forum. There are plenty of forums on the Internet to discuss and argue your politics. My forum is for Alzheimer spousal issues. We are a very diverse group, and the last thing I need is members arguing with one another over politics. HOWEVER, I have stated before, and I reiterate – the DC Forum discussions are about our desire to bring awareness to the issues of Alzheimer’s Disease and patient and caregiver needs. I know it is difficult to separate that from your political views, but we have managed to accomplish it by keeping the discussion to bringing awareness of the disease and what we feel is most needed by caregivers and patients.  In previous years, I requested personal stories of how Alzheimer’s Disease affected you, your spouse, your relationship, finances, emotions, family dynamics – everything - and I delivered them personally to the legislators. You can still do that by writing to your congressmen/women and senators now.

It has been my personal experience that statistics put a plastic smile on their faces, and their minds travel elsewhere. It is pure, brutal honesty about your own emotional journey that wakes them up and makes them take notice. Now, with the advocate visits fresh in their minds, is an excellent time to write your stories and let them know what you feel caregivers and patients need.

As advocates representing the Alzheimer’s Association, it was our job to present to the legislators, the Alzheimer’s Association’s agreed upon agenda for the year. We were given two or three bills or request for bills, and a list of talking points. You, however, are not bound by those rules. You can tell your story and what you feel is needed to fight Alzheimer’s Disease, besides more money for research. For example, in previous years, many of our members have discussed the need for caregiver training, respite, and payment. I would encourage all of you to write those letters now, as a back up to the visits the advocates made this week.

Another strong suggestion is that those with spouses with EOAD (young onset Alzheimer’s Disease – diagnosed before age 65) bombard your legislators with your stories. They are aware of Alzheimer’s Disease as an “old person’s disease”. Most of the legislative aides with whom I spoke were on the underside of age 25. In an effort to “connect”, and demonstrate their interest, they would tell us about their grandparent who had Alzheimer’s Disease. Only when they saw 52 year old Jay Jones sitting in front of them, as his wife Laura explained how Alzheimer’s Disease had turned their life upside down, did they understand that it is not just an “old person’s disease.” That was 3 years ago. Jay is now in a facility, because Laura had a heart attack from the stress, and was told by her doctors that she could no longer care for him at home, work, advocate, and take care of their young daughter.

When one of our previous members, Tony Pesare, gave his speech in front of the Lincoln Memorial to thousands of people, you could hear a very loud collective gasp when he told of his wife’s age at her death – 43. These are the stories the legislators need to hear.

This is advocacy you can do from a chair in your own home. It requires no travel, no money, and very little time. Please consider joining the hundreds of advocates who traveled to Capitol Hill this week and do your part to raise awareness of this horrible scourge.

If very little funding has come from years of advocacy, committees, personal visits, and celebrity testimony, you may wonder if our efforts are worth it at all. One of the most important victories advocates achieved, due in large part to the efforts of Laura and Jay Jones, was the Social Security Administration finally adding Alzheimer’s Disease to their Compassionate Allowance List, enabling those with Early Onset Alzheimer’s Disease to collect Social Security Disability without a 2 year waiting period. It was due to advocates’ efforts and the work of the non-partisan Alzheimer Study Group that led to President Obama’s signing of the National Alzheimer’s Project Act in January 2011. The administration is also asking for $500 billion for Alzheimer research next year. Tiny steps, to be sure, but without all of our advocacy and awareness raising, we would not even have those accomplishments.

I am very sad that I was unable to attend this year, but the member who did attend is an excellent advocate and speaker. I look forward to her guest blog.

Feedback to joan@thealzheimerspouse.com
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.
©Copyright 2012 Joan Gershman
The Alzheimer Spouse LLC
2012 All Rights Reserved

JOAN’S BLOG – THUR/FRI, APRIL 19/20, 2012 – DEALING WITH CAREGIVER DEPRESSION

Before I begin, I want to thank everyone for their concern during my recent illness. Although it was nothing particularly serious – a sinus infection, cough, and painful ears – it did exhaust me and have me down for almost 2 weeks. A strong dose of antibiotics, much needed bed rest, and I am almost back to normal. During this time, I did write about my increased depression, and I received many e-mails of concern and support. I have had quite a bit of time to think about the depression situation, and I would like to address it in today’s blog.

No one should question why I, or any spousal dementia caregiver may be depressed. Working, thinking, decision making, doing every financial and physical household chore, and taking care of the demented spouses’ every physical, emotional, and mental need, while being isolated from friends and the outside world, AND doing so without your life partner to share the burden, is enough to make anyone depressed. It is certainly doing a number on me, and from the reports I receive about caregivers and anti-depressants, I would say I am not alone. As always, I am hoping that my experience and imperfect, but valiant attempt at lifting my spirits, will help those reading this.

Since I have been in a deep depressive fog for at least a month, I started to think about what can be done to relieve it besides raising my Zoloft dose. Not that I am against raising medication doses when needed, but I already do not like the way it dulls my feelings. I do not wish to end up a totally insensate Zombie.

While I was thinking about what other than a pill could relieve my depression,  in an act of outright defiance, foregoing all work, errands, and important phone calls, I took my depressed self to the beach Wednesday morning after dropping Sid at Day Care, sat on the dock, and mulled over my situation. Then, in an act of pure self-indulgence, I went to get a manicure.  

While getting my nails done, my manicurist was relaying a funny story about the ducklings she and her husband gave to their 6 year old son. I found myself responding with questions and laughter. My spirits lifted immediately. That is when it occurred to me that I do not need stronger Zoloft; I need stronger inter-personal non-Alzheimer connections.

My illness prevented me from attending my non-Alzheimer Mahjong group this week. That void, coupled with a head that felt like a dizzy bowling ball, sneezing, coughing, and sleeping, with no one to even bring me a cup of tea, while I still had to attend to my husband’s needs, helped me to understand my increasing depression.

Although living in the Independent Villas is where I need to be at this time of my caregiving life, I am like a lone woman in a wagon train surrounded by Indians, only in my case, I am the lone woman in a community surrounded by 90 year olds on walkers. No offense to 90 year olds, but looking out of my window and only seeing people hobbling slowly on walkers, or being pushed in wheelchairs, can be quite depressing. Not to mention the ambulance that is carting away one neighbor or another at least once a week. Going next door to the ALF to check on my father, and seeing memorial pictures of 11 residents who have died in the last 3 months is not mood lifting.

So, yes, I have been depressed lately, and my prescription is not more medication. It is to try to escape out of the world of the infirm, aged, and demented for more than my 2-hour Mahjong game once a week. It is to get out and mingle with people my own age who have nothing to do with dementia. How I am to accomplish this is a bit of a problem, to be sure, but my sister is coming for a visit in less than a month, and she is determined to “tweak” my schedule to find me more non-Alzheimer time.

It is important to me that everyone understand that I love running this website. I love writing, researching, and helping others through this miserable journey. It is also my best support system. I have no intention of stopping. It gives me great satisfaction. However, being totally surrounded by, and immersed in illness, dementia, and the elderly, while taking care of my mentally and physically disabled husband is not healthy for me.  Therefore, I am seeking balance. I am looking for a hole in the circle around my wagon train – so I can sneak out for more than a weekly 2 hour Mahjong game. And still attend to all of my important caregiving and household duties. Good luck to my sister in working out that schedule.

MESSAGE BOARD: Joan's Blog - Coping With Caregiver Depression

Feedback to joan@thealzheimerspouse.com
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.
©Copyright 2012 Joan Gershman
The Alzheimer Spouse LLC
2012 All Rights Reserved

JOAN'S WEEKEND NOTICE -APRIL 14/15, 2012

Once again, my over active, too busy, caregiver life has caught up with me, and I am, so to speak - sick as a dog. Spent the whole day in bed on medication, and am going back there now. Will be doing the same for the rest of the weekend.

JOAN’S BLOG – WED/THUR, APRIL 11/12, 2012 – EVERYTHING YOU WANTED TO KNOW ABOUT ALZHEIMER’S DISEASE AND MARRIAGE

It has been my mission from the launch of this website in 2007  to educate and inform Alzheimer Spouses, so they will not feel as alone with their thoughts and emotions as I did when my husband and I started on this Alzheimer journey. Since we have so many new members who are struggling through the beginning stages, I decided to reprint a blog from 2 years ago that is a basic primer on what to expect as you navigate through Alzheimer’s Disease with your spouse. See below:

The motto of this website is “Our Issues are Unique”. Indeed they are, as no one but another spouse could relate to the emotions of having a spouse with Alzheimer’s Disease. My latest thoughts have been about everything I did not know about Alzheimer’s Disease and the toll it would take on my marriage when this journey started. As I mentioned in my Welcome Blog of July 07, my only knowledge of an Alzheimer marriage was Nancy Reagan staring up adoringly at her husband. Thus, everything the disease brought to my marriage was an utter and complete shock to me. Since then, I have made it my mission to educate and inform as many spouses as possible about what to expect when Alzheimer’s Disease comes into their marriage. With that idea in mind, I have come up with a basic list that I feel should be given to every “newbie” AD spouse, not to frighten them, but to reassure them that what is happening and the emotions they are feeling are “normal” under the circumstances; that they should not feel guilty or alone; that their issues are shared by every Alzheimer Spouse. Please add your own ideas to my list on the message boards.

• Alzheimer’s Disease is not just about memory loss. Early symptoms are often personality changes – irrationality; irritability; anger; temper tantrums; loss of reasoning ability. If you notice such a change in your spouse, head to a neurologist that specializes in dementia before you call the divorce attorney.

• Your relationship WILL change. You will fight those changes with every breath you have, trying to return it to the way it used to be. Although exhausting and heartbreaking, that fight is another “normal” part of being an Alzheimer spouse. Alzheimer’s Disease is going to win, but you will find ways of accepting or adjusting to the relationship changes.

• You can no longer solve marital problems the way you used to. One of the first abilities a person with Alzheimer’s Disease will lose is the ability to reason. We say – “The reason button is broken. It cannot be fixed.” Therefore you will not be able to compromise, discuss issues rationally, or even argue rationally. Walking away from solving problems together is one of the most difficult tasks an Alzheimer spouse must learn to do. You cannot argue with a person with Alzheimer’s Disease. They have tunnel vision, and cannot see any point of view but their own.

• There may be a period of time in which you may not like the spouse Alzheimer’s Disease has given you – do not feel guilty – we all go through it.

• You may experience one or more of a range of emotions – confusion, anger, loneliness, sadness, guilt, and depression. We all do – you are not crazy; you are not a bad person. These emotions come with the territory of being an Alzheimer Spouse.

• Your spouse will slowly regress emotionally. You will recognize the same stubbornness, rebellion, self involvement, and concrete thinking that you saw in your children as they were growing up.

• Friends will distance themselves. As your spouse is less able to understand and engage in adult conversation or participate in the physical and mental activities you once enjoyed with friends, they will disappear. But you will make new friends in the Alzheimer’s Community who will be there to understand and support you.

• Family may be in denial – Most people with Alzheimer’s Disease are expert at hiding their symptoms and behaviors for years from those who do not live with them. Expect to hear – “Well, I don’t see anything wrong with him/her.” Expect to hear it A LOT. You can try to educate them about the disease, but the fact is that until your spouse’s condition progresses to the point that it is so severe, it cannot be denied, those in denial will remain so.

• Finances will suffer – Alzheimer’s Care is expensive. Retain the services of a certified elder law attorney and take his/her advice as to how to handle your finances, including applying for Medicaid.

• You cannot go through this journey alone. Seek education and support. Read everything you can about the disease. Keep in contact with the neurologist treating your spouse. Contact the Alzheimer’s Association for information and support groups in your area. Join a support group.

• Give yourself a break – find a non-Alzheimer activity that you enjoy and participate in it – book club, card night, quilting, fishing, hobby club, golf. You will need to make a life for yourself when your caregiving days are over – prepare NOW, so you are not totally adrift when the time comes.

• Your role will evolve from spouse to caregiver.

• You will find strength in yourself you never knew was there. Reach out to others with your knowledge and experience. It will give you purpose, satisfaction, and comfort.

• Remember – you are not alone. This website provides a wealth of information and support. Become a member of www.thealzheimerspouse.com and take advantage of all it has to offer spouses of Alzheimer patients.

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

JOAN'S HOLIDAY WEEKEND NOTICE- APRIL 6-8, 2012

Whether you are celebrating Passover or Easter this weekend, my holiday wish for you is to have as peaceful a celebration as possible under the circumstances of being an Alzheimer Spouse.

If you are celebrating with relatives, I hope they are able to see and understand your situation and give you a break. That is what is happening in my house.

Since there is no way I can manage to take both Sid and my father and two wheelchairs to my cousin's house, which is 35 miles away, she has offered to do the cooking and bring it to my house. Can't get a better deal than that!

Happy Passover and Happy Easter to everyone.

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©Copyright 2012 Joan Gershman
The Alzheimer Spouse LLC
2012 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 – TUE/WED, APRIL 3/4, 2012 – WAS IT ALL A MOVIE?

If Sid did not have Alzheimer’s Disease, I imagine that if we talked about our lives together, we would reminisce and revel in the good parts, discuss the bad parts and what we could have done differently, laugh over our misadventures, and bask in the warmth of our decades old emotional connection.

But he does have Alzheimer’s Disease, which means that when I foolishly bring up an incident from our past, he looks at me blankly, and says he does not recall what I am talking about. Of course, I remember the big milestones, the little incidents, the goofy playful times. Since I have those memories, when recalling them, I should at least “feel” the old bond we shared before Alzheimer’s Disease invaded his brain and took the connected “us” away. But I do not. I feel as if I am watching a movie of someone else’s life. It is an odd feeling, and I don’t like it.

This makes me wonder about shared memories. Is it only possible to go back and “feel” the emotions tied to those memories when both of you are able to do so? If the memory is there for only one of the pair, does it mean that the emotions tied to those incidents are gone? Or do I have too much Zoloft in my body to be able to “feel” anymore? I have no answers. It is why I am asking the questions.

I never thought much about this until it started to happen to me. One night, I saw something on TV about an airline misadventure. It reminded me of “Joan and Sid’s Greatest Adventure”. Our 2003 adventure involved a broken plane, 12 hours in an airport, a bomb scare, an airport evacuation, an overnight stay in a hotel, the 11 o’clock news, and the heroic effort of a tired pilot facing down 200 hysterical passengers. No one who was there will ever forget it – unless he has since developed Alzheimer’s Disease.  When I referenced the adventure to Sid, he gave me the blank stare, and said, “Yeah, I guess I kind of vaguely remember something about it.”

His failure to recall one of the most lengthy and newsworthy incidents ever to involve us, took all the fun out of reminiscing about it. It was no longer something that happened to “us”. It happened. I was there, and now I look back on it as viewing a movie.

I do not know if this weird detachment is specific to me or if other Alzheimer spouses feel the same about the loss of shared memories. I would like to hear from you on this topic. Please post comments on the Message Board: Joan’s Blog – Was it all a movie?

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©Copyright 2012 Joan Gershman
The Alzheimer Spouse LLC
2012 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 WEEKEND BLOG – MARCH 31/APRIL 1, 2012 – DESPAIR

During my forced absence due to computer problems, I have experienced a variety of incidents that have elicited a wide array of emotions. Resignation, despair, sadness, and detachment are a few of them. Today I would like to focus on despair. It is not an upbeat topic to be sure, but if I am to be honest, I cannot always express an upbeat attitude if that is not what I feel.

We have often discussed how our lives as Alzheimer Spouses have forced us to morph from “couples” mode into “caregiver” mode. We are envious of older couples we see who still have the loving “connection” that comes from decades together; we are envious of their health, ability to experience travel, adventures, and every day conversation; we are envious of their friendship and partnership. Last weekend, I attended an event that crushed me with the realization that I will never again experience this normal part of marriage with my husband of 41 years.

On a night when I should have been celebrating the fact that my husband and I were enjoying dinner and a musical show, I was, instead, overcome with despair at the turn our lives have taken. As we were eating dinner with our Alzheimer couple friends, and their non-Alzheimer couple friends, I was struck by the chemistry between the non-Alzheimer couple. They were playful with one another, engaged in what each was saying,  and talked about their plans for travel. In stark contrast, I was telling my Alzheimer husband that, no, he could not order a baked potato AND French fries as his two ‘sides’. The unease started to settle over me.

When we entered the auditorium, I was faced with hundreds of non-Alzheimer “over 55” couples who were talking and making plans with friends for a multitude of activities. During the show, as the music became louder, and surrounded by “normal”couples, I felt the walls closing in on me, crushing my future with Sid, leaving me alone and adrift to find my own way in the world, no longer part of the “us” that had been my joy for so many years. I could not focus on the beautiful music. My heart was swirling with despair. I was enveloped in it. I have never felt it so completely before those minutes.

Yes, I should have been concentrating on the fact that Sid and I are still able to go out to a dinner and show. I was, instead, suffocating with the despair of what we were not able to do. I understand that is counterproductive, but it is what I felt at the time, and I cannot change my feelings.

Although it was a devastating experience for me, I have since reigned in my emotions and am carrying on without dwelling on the despair. I know that it will pop up again at odd moments, probably when least expected. I cannot change that either. It is there, under the surface, and it will remain with me most likely long after my Alzheimer journey has ended. That is part of being an Alzheimer spouse.

MESSAGE BOARD: Joan's Weekend Blog - Despair

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©Copyright 2012 Joan Gershman 
The Alzheimer Spouse LLC
2012 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.

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