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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.

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JOAN’S BLOG – TUESDAY, MAY 21, 2013 – NOTHING TO SAY

It is time once again for one of my little stories. Trust me, in the end, it will relate to living as an Alzheimer Spouse.

When I was nine years old, I decided that I wanted to be a writer. I wanted to write novels with fascinating characters and riveting storylines. (Maybe at nine, I did not use the word “riveting”, but I was serious about my goal.)

After I graduated college, got married, and started a family, I always thought that “someday” I would get a chance to write. My opportunity came one year when I was in my early 40’s and between jobs. I was going to start as the now prolific, well known, and extremely wealthy Sandra Brown and Nora Roberts had started- by writing romance novels. Not the sweeping, lengthy, romantic suspense novels they write today. No, I was going to start small, and write the 200 page Harlequin romance novel. “How hard could this possibly be?”, thought I. Girl meets boy; they hate each other; they fall in love; they live happily ever after. Anyone with half a brain and limited verbal skills can write one of these things, I thought, and I considered myself whole brained with above average verbal skills.

Then I sat down to write. I had the general plot outline already set in my mind, but I needed a setting. I needed professions for my characters. The woman could be a lawyer. No. That won’t work, I thought. I know nothing about the inner workings of the law. I am no John Grisham. She could be a doctor or a nurse. No. That won’t work. I know nothing about medicine. I’m no Robin Cook. I went through a list in my head– archeologist; real estate agent; business mogul; store owner; financial wizard……………….and on and on.

That’s when it hit me. I knew nothing about anything, and I surely did not have the time to spend years in the library researching an unfamiliar career. I had been in the field of education as a substitute teacher and special education assistant – not exactly the stuff of excitement, intrigue, and adventure suitable for a novel. I am not sure how my later vocation as a speech/language therapist would have worked in a romance novel, but at the time, I had not yet ventured into that field. So there I sat, dejected and depressed because I knew nothing about anything.

Now let’s fast forward 20+ years. Although before Alzheimer’s Disease, Sid and I led full lives with interesting careers and enjoyable travel, for the last couple of years, I have led a more and more insulated life. As Sid’s physical disability continues to worsen, it has become much too difficult to take him anywhere. We no longer go out with friends, because it is too physically demanding for both of us. We sit at home now, watching TV together in silence, as he cannot even discuss the TV show, because he does not remember what is going on from one minute to the next.

When he is at Day Care, and I have the opportunity to go out with my Alzheimer friends, the conversation usually revolves around Alzheimer’s Disease. I am surrounded by Alzheimer’s Disease.

My attempt to escape the Alzheimer World by making non-Alzheimer friends and attending activities that have nothing to do with Alzheimer’s Disease is not going well. Sid’s appointments and caregiving take up most of my time, and make it difficult for me to find new friends and activities, but last week, an opportunity came my way. A bingo luncheon at my friend’s lodge. She invited me to join her table of 8. Now, honestly, bingo does not thrill me, but I was desperate to get out of the house and see new people. So there we were at the table, and the conversation started. I was transported back to my attempt at writing a novel. Just as I had discovered then that I knew nothing about anything, I discovered at the bingo table, that due to leading such an insulated all Alzheimer life, I had nothing to contribute to the conversation. Planning cruises. Nope, not me. I no longer travel, as I cannot take Sid, and have no more respite days to travel alone. Theater? Movies? Nope, not me. New restaurants? Nope. The conversation eventually turned to books, which I can discuss, as I still read as voraciously as I did before AD.

I came out of that luncheon with a renewed fervor. I may not ever have the knowledge and experience to write novels like Dan Brown and David Baldacci, but I am darn well going find a group to join that goes to museums, shows, ANYPLACE, and offers enrichment activities. I simply refuse to be so swallowed up by Alzheimer’s Disease that I become a non conversational Zombie.

MESSAGE BOARDS: Joan's Blog - Nothing to Say

Feedback to joan@thealzheimerspouse.com
©Copyright 2013 Joan Gershman
The Alzheimer Spouse LLC
2013 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 – WEDNESDAY, MAY 15, 2013 –CAREGIVING IS A KILLER

First, I want to thank everyone for their kind wishes and patience during my illness. It was a long, miserable couple of weeks.

Before my bout with bronchitis, I was about to write a blog addressing the tragedy suffered by our member, m-mann*. As most of you are aware, his father, in the very early stages of most likely dementia, killed his wife, who suffered from unbearable pain, m-mann’s wife, who was deep into Alzheimer’s Disease, and then killed himself. I am not going to discuss suicide and murder, or mercy killing, as m-mann prefers to think of it.

Instead, I want to discuss the unrelenting burden of caregiving that leads caregivers to nervous breakdowns, heart attacks, strokes, stress related death, and sometimes the contemplation of suicide. I am the type of person who likes answers to questions and solutions to problems. The caregiving issue is so disturbing to me because I can find neither answers nor solutions to it.

We, as spousal caregivers, have deep emotional ties to our spouses and guilt related to feeling angry that we have had to give up our lives to care for them. We carry these emotional stresses in addition to our physical burden of caregiving. We get up in the morning with no partner to share the day. In the early stages, we often deal with anger, resentment, and denial on our spouses’ part. There can be temper tantrums, rages directed at us, getting lost while driving, It can be similar to raising a rebellious teenager, which is difficult when your child is 15, and you are in your 40’s. When your “child” is in their 50’s, 60’s, and 70+, and you are well beyond your 40’s, it can be impossible. When the disease progresses, and they need assistance with toileting, dressing, showering, shaving, walking, and eating, the physical strain on us caregivers begins to take its toll on our health. Cleaning up toileting accidents that require latex gloves, mops, trash bags, and a lot of sweat, further break down our physical and mental health.

Then there was my recent illness. No matter how horrible I felt, and believe me, horrible barely describes it, I still had to get out of bed to tend to Sid’s needs. Breakfast and lunch had to be set up, made, brought to him (by me), and cleaned up (by me). Thankfully, we do receive a delivered dinner here at the Independent Villas, but I still had to get out of bed to answer the door, warm it up for him, set it up in front of him, and clear it away. I had to give him his pills at the correct time, regardless of whether I needed to sleep. I had to drag myself out of bed to open my own can of soup. I had to keep a written log of when I took my various medications. I was coughing, could barely talk, was extremely fatigued, had a fever, and was generally as miserable as I could be, but Sid’s needs came first.

Click here for an old message board discussion on “just an ordinary day” in the life of a 24/7 caregiver. I can assure you that it will be mind boggling to those not familiar with caregiving.

Those coping with Young Onset Alzheimer’s Disease ( diagnosed before age 65) have their own set of unique problems. Not only are they caring for their spouse, but are still working and raising children. Their salary, which paid the mortgage, utilities, car loan or maintenance, college funds, retirement funds, food, clothing, health insurance, and general living expenses, must now include Day Care and/or in home aides to help care for the ill spouse.

So what are our solutions to avoid caregiver death from stress and health neglect? Certainly, those who have the funds, hire as much help as they need to ease their burden. They hire people to do the heaving lifting and the ADL’s ( activities of daily living). It does not alleviate their emotional stress, but it goes a long way when one does not have to worry about finances. Often, however, spouses end up depleting their savings to pay for care. Those with foresight bought a long term care policy to help with caregiving expenses.

If you think Medicaid is the answer for those without money, you are seriously misinformed. Based upon my own experience with Medicaid, I can tell you that they deny and refuse services, no matter how badly needed, unless you beg and justify every single hour you request. If you ask for too little, they question why you need the services at all. If you ask for too much, they say that they don’t offer that much home help, and insist you place your spouse in a dementia unit of an Assisted Living Facility, which they do not pay for. They “assist” with level of care payments, which are generally between $250 a month and cap off at $1200 a month. Room and board, which is generally between $3000 and $5000 a month, is your responsibility.

Unless a patient is bedridden and close to death, they will not approve Nursing Home placement, and if they do, they take the spouses’ social security to pay for it, leaving the spouse totally dependent upon the State to determine how much money they will be allowed to live on. They will “divert” the amount of money that they deem as enough for “living expenses”. If you own your own home, most States (although not all), will allot you enough money to pay your mortgage and remain in the home. If you rent, they will give you only enough money that they deem appropriate for rent. In most cases, it means you will have to move to a less desirable apartment and neighborhood. Basically, you are being forced to give up your life for your spouses’ care.

Given the physical, emotional, and often financial, burden of spousal caregiving, is it any wonder that caregivers often die before the person for whom they are caring? Is it any wonder that some consider the unthinkable as did e-mann*’s father?

As I said in the beginning, I have no answers and no solutions. What I do know is that 24/7 caregiving of a spouse is a lonely, impossible task that strips the caregiver of friends, physical and emotional health, finances, peace of mind, and love of life.

MESSAGE BOARD: Joan's Blog - Caregiving is a Killer

Feedback to joan@thealzheimerspouse.com
©Copyright 2013 Joan Gershman
The Alzheimer Spouse LLC
2013 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, APRIL 29, 2013 - THE CARDINAL RULE

I am writing this blog as a reminder to those of you who have forgotten, never learned, or are still unable to implement the cardinal rule of being an Alzheimer Spouse – You cannot speak to nor relate to your spouse as you used to. You are no longer a “couple” who make rational decisions together. You cannot explain information to them; you cannot rationalize, reason, or argue with them. Their brain is damaged, and whatever communication strategies worked for you before, are not going to work now. I caused myself massive stress for years because I refused to give in to this reality. I felt that every time I took my social worker’s advice and ignored my husband’s irrational reasoning or behavior, rather than trying to discuss it with him, I was destroying a piece of our relationship. What I refused to acknowledge was that Alzheimer’s Disease was already destroying our relationship. No matter what I said or did was not going to change that. What I needed to do was learn to relate to the disease, not to him. It was the most difficult part of being an Alzheimer Spouse, and it took me four years to finally give up and distract, divert, and ignore him, instead of trying to have a discussion with him.

The reason I bring this up now is because I did the unthinkable this week. I broke the “rule”, and tried to explain (because he asked), what his new added Medicaid services would be. He wanted to know who was coming, when they were coming, who was paying for it, and what the aide was going to do for him. Why, I ask myself, did I try to answer. I know better. Maybe my brain was on overload from stress. Maybe I simply lost my mind for a minute.

Medicaid took away his Wednesday and Saturday, aide who came to shower him, and replaced those times with an aide to get him ready and put him to bed Mon-Thur. nights. He could have his showers during those times. As you can imagine, it did not matter what I said or how I said it, he didn’t understand what was happening. The more confused he got, the angrier and more frustrated I became until I ending up with a massive headache, and a stress attack.

Never, ever, ever, try to explain anything to your spouse. Never try to reason with them. Never give them complicated answers. This is fairly simple if your spouse is in advanced stages, cannot engage in conversation, and hardly knows who you are. But when they are still in the stages in which they can appear reasonable, and INSIST on knowing what is going on with finances, taxes, and in our case, home health aides, it is much more difficult. But it is doable. One must learn to be short and concise.

Except for my recent lapse, I generally tell Sid nothing to do with important household matters. If he asks, I give the simplest answer possible – one that requires no explanation or follow up. For instance, when he saw an ad on TV about taxes, it reminded him to ask if our taxes had been done. Rather than explain why our accountant no longer does them or who did them and how much it cost, I simply said, “Yes.” Of course, he then asked again and again every time he saw that ad on TV. Each time, although I wanted to pull my hair out of my head, I repeated “Yes.”

When he sees an advertisement in the newspaper for a “miracle cure” for Alzheimer’s Disease, and he asks me to check into it, rather than going into a long explanation about the idiocy of these claims, I say – “I will ask the doctor about it.” He doesn’t get angry, and I don’t get stressed.

This new manner of communicating with our spouses is painful because it reinforces the change in the relationship. You are no longer partners. You are the caregiver/parent/nurse/doctor, and your spouse is the child/patient. Because of their confusion and inability to process language or make reasonable decisions, it puts an end to the marriage as it was. This alteration in communication status has left me with that understanding, and I suppose, resignation. If I forget this lesson, a relapse as I had last week surely reminds me. As a result, I find myself not only alone, but lonely and sad. This disease is a nightmare.

MESSAGE BOARD: Joan's Blog - The Cardinal Rule

JOAN’S BLOG- FRIDAY, APRIL 19, 2013 – WHAT IF IT WERE ME?

Perhaps because I am a burned out caregiver, a heartbroken wife, and am exhausted from not only caring for my husband, but navigating and fighting a Medicaid system all by myself, I have been impatient, grumpy, and resentful towards my husband. He deserves better than I have been giving him lately, which has caused me to reflect – What if it were me?

What if my brain failed me, and no matter how hard I tried, I could not remember the questions I had asked. How would I feel if the one person I have loved and depended upon for a lifetime, rolled his eyes at me and yelled – “Stop. Stop. Please stop asking me. You’ve asked me that same question five times tonight.” I would feel dejected, rejected, sad, and hurt.

What if my once sharp mind wandered into Neverland when my spouse was talking; what if when I did hear what he was saying, I could not follow or understand most of the information he was trying to convey. It was too confusing. What if when I looked at him with bewilderment, he said to me – “Weren’t you listening to me? Where were you?” I would feel so sad that I could not live up to his expectations. I would feel so hurt that he was not being kinder to me.

What if my once strong body failed me; I was in constant pain; and I could not move my feet more than a few inches at a time. What if he pushed my wheelchair too fast and I screamed at him to slow down. What if he said to me, “I’m doing the best I can. You complain about everything I do for you.” I would feel angry at myself for losing my temper, but also angry at him for not having more patience with me.

What if, no matter how hard I tried, I could not remember that I told him to take out the garbage; fill my drink; get me the remote; call the doctor; shut off the light. So I told him to do those things again and again and again. What if after the 3rd time of telling him, he snapped at me – “ Stop nagging me. I heard you. I can only do one thing at a time.” I would feel sad and hurt.

This is what I have been thinking about lately as my patience and stamina have left me, taking my empathy and compassion with them. I am trying to remind myself how devastated I would be if both my body and mind crashed on me, and the only person on whom I depended to take care of me was impatient and testy with me.

After a meeting this morning with our new case manager, it seems that I will now get nightly help in preparing my husband for bed. I do so hope that the extra help relieves enough of my burnout, so that I can give my husband the best, not the worst, of myself.

MESSAGE BOARD: What if it were me?

Feedback to joan@thealzheimerspouse.com
©Copyright 2013 Joan Gershman
The Alzheimer Spouse LLC
2013 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 – TUESDAY, APRIL 16, 2013 – ALZHEIMER IGNORANCE TO THE MAX!

This afternoon, I am going to be interviewed by a reporter for Every Day Health (http://www.everydayhealth.com/). The purpose of the interview is to find out “how Alzheimer’s affects caregivers and families—the emotional and financial toll, and what advice you might give to families dealing with a recent diagnosis”.……………………..It is my opportunity to discuss the type of support needed by Alzheimer caregivers, spousal caregivers in particular. I will let you know how it goes.

In the meantime, I am posting a little TRUE story written by an Alzheimer Spouse friend of mine, detailing her experience in the land of “ The General Public is Ignorant About Alzheimer’s Disease.”

Written by “Muffy”:

In the middle of last week I was rolling down Highway 1 on an errand. After the errand, I was rolling back north, when I spied with my little eye, Barnes & Noble. I usually do not shop here but I knew I had a gift card I still had not used.

A friend had mentioned a book I would possibly be interested in following up on so I turned in to the parking lot and walked into the air conditioned splendor from a day that was crawling above 80 degrees. (I know; I had had a phone call that morning from a best friend in Milwaukee who described her weather and I felt a little guilty - not much, but a little.)

I waited at the customer service counter with several others. I got a clerk, mid thirties or older, and asked for the section on Alzheimer's Disease. After a nano second pause, his face lit up and said, 'Follow me, Mam.' I was still thinking, Do NOT call me MAM.

We turned into the life style aisle, thinking we were on our way to neurology or at the very least something medical. We stopped however as he pointed to about three shelves with several selections I have read and several others I am familiar with. But what else I saw shocked me. These references were in the DIET SECTION. You heard right, Alzheimer's references in the Di-et Sec-tion.

I turned to Mr. Clerk and asked why? He replied, " Well, I guess if you eat the right diet you can be cured of Alzheimer's." Luckily, I had items in both of my hands, which prevented me from reaching for his throat. What a slap in the face to anyone who has or is in involved with this horrid disease. I was still thinking of choking the clerk for the insensitivity this reflected.

A few mintues later, after asking for and speaking with the manager, I was told that he was only doing what corporate dictated, i.e. – placing Alzheimer books in the “Diet Section”. He was not interested in listening to anything I had wanted to suggest. "Bite Me" was almost out my mouth, but I held on and walked away.

My philosophy has evolved into speaking with anyone who is interested in finding out about Alzheimer's and help them find what information they need. I was in the wrong place. Very wrong.

Instead, I went to the writing section and now have the book I need for some help and guidance on writing my memoirs as an Alzheimer's caregiver. No on else has my story to share.

I left Barnes & Noble depressed.

Everyone who is an Alzheimer caregiver has a story to share. So many similarities in what Alzheimer’s Disease does to our spouses, our marriage, our emotional state, and so many differences in that Alzheimer’s Disease affects each patient in a unique manner. As to why the Barnes and Noble clerk, or anyone, should care about Alzheimer’s Disease, please read these previous blogs:

Making Purple the New Pink

What Do You Want the World to Know?

MESSAGE BOARDS: Joan's Blog - Ignorance to the Max

Feedback to joan@thealzheimerspouse.com
©Copyright 2013 Joan Gershman
The Alzheimer Spouse LLC
2013 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:

The Wedding Rings - March 4, 2013 - The bittersweet story of the meaning of my wedding rings.

The Therapy Session - March 9/10, 2013 - The difficult first therapy session to deal with the "loss" of my husband to Alzheimer's Disease

The Crying Has Begun - March 18, 2013 - How I am learning to grieve - crying at the sadness and smiling at the good memories

This Has to Stop - March 25, 2013 - The doctor tells me I have to stop the physical caregiving

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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.