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Alzheimer's Unseen Victims





Alzheimer's unseen victims surround us. Trying to say the long good bye, a husband turns his wife and checks her bed sores. In another part of town, a daughter pats her mother's hair in a care facility and chats about her day at work and what she'll fix the kids for dinner. A year ago, Beverly Isenberg sat alone in her home 90 miles from her husband in a care facility. She fought loneliness, trying to say good bye.

REMBER
By: Beverly Isenberg

I had a real crying fit today. Again. I seem to spend most of my days either mopping my face and blowing my nose after crying or fighting back against the thoughts and memories that I know will bring the blues back until I cry again. And again.

I am really and truly sick of spending so much time disliking myself for being such a cry baby. I talk to myself a lot, agreeing that I can't change anything, that life goes on, that times change, that I should go with the flow, get on with it, forget about it, and so on. That kind of a pep talk works for maybe fifteen minutes and then something else will trigger a memory and I have tears running into my ears once more.

This time I was reading the Bob DeMarcos Alzheimer's blog. The title caught my eye, "REMBER." Except my eyes fooled me and what I thought I saw was the word, "REMEMBER."

I thought to myself, "Gosh, maybe there are other people in the world who are having as tough a time as I am getting along without their beloved. Maybe someone else has found the secret to getting on with life without their helpmate." I hurried to find my glasses and read the article. Oh, such a disappointment. It wasn't about remembering but something quite different, another drug that might be helpful in the fight against Alzheimer's.

My husband, George, is in an Alzheimer's care home 90 miles from me. We (just me, now that George is gone) live in a rural community where it is difficult (nay, nearly impossible) to find a live-in caregiver. So George and I are living separate lives. "Well," you may say, "You have been living separate lives for a long time. Why are you going on about it? George doesn't remember you, and hasn't for quite a while."

And I answer, "Yes. Yes, yes, yes." I know all that but I can't forget about him and I can't go on without him. I have to keep trying to find some way to bring him back home where he belongs. That's when the tears bubble up and my throat gets tight and I remember our life together and I want it back. Foolish old lady, life will go on but you might as well give up your hopes and dreams. George can never come home again and life will never be the same.

"But," I say, "Maybe that breakthrough will come and there will be a miracle drug on the market. Maybe even next week." Dream on, Beverly.

Then I begin to wonder. Would it be better if George were dead? Could I get over this lonesomeness? If there was a funeral and if I had to see him dead and buried forever would it be easier to forget about him? I think I must be going completely crazy to think this way. And I cry. Again.
- - - -

Beverly said, “Good bye” to George last summer during a military funeral near Redding, California.

Molly Brown, DMS

"Never Too Young For Child Abuse" is posted on my other blog, Lyn's Circle.

Friendship

 

 


"Nobody, but nobody can make it out here alone."
Maya Angelou

As we age, we depend more and more on friends to comfort us so we feel less alone. We need to talk about our fears and failures, our hopes and dreams. We need someone to listen and say, "I know just what you mean," when we talk about our mother, our husband, our job. We need someone who can understand our feelings when our hearts are broken. Someone we can call in the middle of the night. Someone who can talk us through a crisis and say, "You're strong. You can do it."

We change. The friends we need change. As teenagers, we needed friends in the right circles to prop up our fragile self-esteem. As we age and learn to accept ourselves, we pick our friends for who they are, not how they look. We change. Life changes. We set out in a new spiritual direction, change jobs, get a divorce and seek new friends. We have new interests and want to share them.

My husband is a good guy and a good friend. I can ramble along about many things-- until I start talking about feelings. Most men don't care about hot flashes-- unless you're grouchy. Then they'll head for the garage or rake the yard. If you complain about your favorite pants that won't zip, they'll probably be smart enough not to offer suggestions there, either. Men are
great-- just hard to talk to. They want to fix-it and get on with it. So, don't complain about your mother or your sister or he might try to fix it-- and make things worse. We need female friends when we want to talk about feelings.

You're never alone if you have a few good friends a phone call or mouse click away.

There's good times, bad times, and sad times. Do you have a good friend who listens?

Molly Brown, DMS


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 Lucky

(Part 2)

The lawyers, the neighbors, the police, the social workers, my previous employer, and the insurance representatives didn’t think it was lucky for them that I fought for my son’s life no differently than if he had cancer or heart disease or a birth defect or AIDS or Alzheimer’s. They see those illnesses as "real." My son’s brain illness, oddly, is grouped in with addiction and the psychological problems of the "worried well" and is suspect. It is not legitimately deserving of services and family leave and funding and respect and, mostly, a cure. They haven’t felt lucky when I contest their safe and sometimes smug opinions, conclusions and decisions on the subject either.

At first, my husband, family and friends didn’t think my son was lucky; they thought I was being over protective and indulgent. After my son’s second psychotic break or "heart-attack" of the brain as one doctor explained it to me, after they witnessed him dancing outside to no music anyone could hear with black marking pen writing all over his arms, after he explained that he put water on his head to make his hair stand straight up so he could project and protect his thoughts, after they saw him cutting flowers and eating them, after not knowing where he was for weeks until I finally found him, after sitting up with him all night in the emergency room while waiting for a bed at a hospital, they have changed their minds. Now they think and say my son is lucky to have me for a mother.

Now, that I found him a doctor that will listen to him whether he is on medication or not and is willing to help us keep him out of a worthless revolving door hospital stay, and now that I have navigated the tortuous SSI system so he has a dependable source of income with a safe place of his own to live in instead of the street, and now that he is stabilized and eating and sleeping and reunited with his girlfriend, now they are grateful that someone hung on, and still hangs on, never letting go, never giving up.

My son doesn’t think he is lucky though. Not yet. And why should he? For him, I am forever associated with a system that fails and betrays him. It took time for me to figure out what was happening and what to do about it. During that time, he was terribly hurt and is now scarred. His scars don’t show any more than his illness. No one would know the hell he has been through. And it is not over. The illness is typically cyclical. Because he refuses a treatment that is not a cure and only benefits others by hiding him away in a drug-induced prison, he is doubly stigmatized. If he does become manic again, there will be an implication of blame because he isn’t "on" medication. And, he rightly feels that I am the one who put the whole nightmare in motion by taking him to the emergency room--a decision that any mother would be expected, and actually, required to make when her child’s life is in danger. No, he isn’t ready to think he’s lucky to have me for a mother.

But, if he does not yet feel lucky to have me for a mother as he bravely goes on with his life, I feel very lucky to have him for a son. His intelligence, his strong will, his unique God-breathed spirit is saving him. He is one of the most interesting people I know. He is one of the most generous and kind people I know. He makes me laugh, and I am very proud of his strength in so much adversity.

I used to sing to him the song from the book, "Love You Forever," from the time he was small. "I’ll love you forever; I’ll like you for always. As long as I’m living, my baby you’ll be." If our children are our future, then we are our children’s histories. I know who my son is. I will never forget no matter what happens to his brain. I will fight for him until the day I cannot anymore. And even when I am gone, I will pray forever that some day these brain illnesses will receive the resources they deserve so they can be cured, not just inadequately contained, and no more children will have to be lucky to have a mother like me.

 

By:

A Mother

- - - - -

 

 

This mother prefers to remain anonymous to protect her son.

Molly Brown, DMS

 

 

 

 

 

 

 

 


 

 








 
When your child has mental illness and has a psychotic break, or heart-attack of the brain, you're pulled into our mental health system. In this world of mental health care, you soon find there is often "no lab tests, no scans, no definitive medical method" for telling you what is wrong with your child. This is one mother's story about what will be a lifelong journey for her– trying to protect her son.  
 

Lucky

My son has a life threatening illness, but you wouldn't know it to look at him. You would see a tall, good-looking, skinny kid with a usually shy, kind, generous demeanor, a scraggly, wanna-be beard and a unique laugh that makes you smile even when you don't know what he's laughing at. He looks a little disheveled some days. He may have an odd hair thing going time to time. He may seem a little distant and pre-occupied or may be very excited and passionate about some topic and bend your ear about it for a while. Typical kid these days most would say. Smokes a little weed. In high school had a few experiments with alcohol and other drugs. Has a steady girl friend and is going to junior college. Pretty normal sounds like.

But he may die from his illness. And, he is only 22 years old. It has been four years since he first got sick. He has been in the hospital three times for over a week, sometimes two. His diagnosis has changed three times. He currently receives no medicine and no medical care. Right now, it seems the illness is in a kind of remission, but the prognosis is not good. It is only a matter of time they say before he will be ill again. If he does get ill, I may not be able to get to him in time to save him.

I had a nurse tell me on the third or fourth night I visited him in the hospital the first time that he was one of the lucky ones to have a mother like me. I had no idea what she meant then, but I was the only visitor to his floor of ten or more patients that night.

Her remark has stuck with me because, until recently, it was the minority point of view. My son didn't think he was lucky to have me for a mom when he heard me lie and say I would not take him home from the emergency room. I lied because that was the only way they would admit him to the hospital when he didn't want to go. He needed to go because he thought he was a god and could make people do and think what he wanted by talking to them through a triangle he made with his hands.

He doesn't think he's lucky when I am constantly asking him if he is eating and sleeping. I do this because when he is ill he can't decide what to eat and so doesn't. For days. I ask about whether he is sleeping when he looks drawn and has dark circles under his eyes and can't make eye contact. Sometimes, it hasn't been that he can't sleep, but hasn't. This isn't surprising when he has only had his car to sleep in, or a bench or a bush if he has taken off to find the love of his life who he only just met for the first time the day before in a five minute conversation at a coffee shop.

He definitely doesn't think he's lucky when I negotiate with him to just take his prescribed medication long enough to get out of the hospital. He feels betrayed because he knows that I know that the medications aren't medicine. They don't cure him. They just take away his dreams and passions and put a blank, dull fog between him and the rest of the world. They also interfere with his ability to make love to his girl friend. This doesn't matter to the doctors, but it matters a great deal to him once he is feeling better.

The doctors and staff at the hospitals and clinics don't think it is lucky that my son has me for a mother. Once they called me at work to tell me that they were going to let him walk out of the hospital because they couldn't make him stay past three days since he told them he could sleep on a friend's couch, had $50 in his checking account and promised to fill his prescription and make a doctor appointment in a week. This was the day after my son told me that he had finally figured out that he was Jesus, his new girlfriend was Mary Magdalene, and I was Mary, and if we could all just be together, we would bring on a wonderful new age for the planet. I told the nurse at the top of my lungs and with a few cuss words that I would be at the hospital in 15 minutes, and if my son were out on the street, there would be hell to pay. She definitely didn't think it was lucky I was his mother.

When I pushed and pushed doctors for a diagnosis and a treatment plan for my son and was told there were no lab tests, no scans, no definitive, medical method for telling me what was wrong with my son, they didn't think it was lucky either. When I questioned this ridiculous document, the DSM-IV that they kept quoting, but didn't seem to have a copy of, they didn't feel lucky. So, I bought my own copy and discovered that it was simply a classification system of the varieties and vagaries of "mental illness." I realized that getting a "diagnosis" didn't mean that then they would know how to cure him; it didn't even necessarily mean they would know what medications to give him. They were offended and thought I was presumptuous and in denial, when I told them that I thought this book of theirs was simply a way for everyone to feel good, like we were doing something because we had figured out what page he was on, but who cares if naming it doesn't make him better. They didn't think my son was lucky; they were pretty sure I was proof for their studies of a genetic component to his illness.

To be Continued

Molly Brown, DMS

"Help Your Neighbor" is on my other blog, Lyn's Circle.




Alone Now and Remembering So Much



Beverly Isenberg
is no longer a caregiver for a husband with Alzheimer’s. Alone now, she remembers the good times before her husband, George, lived in a care facility 90 miles away.

REMEMBERING
By Beverly Isenberg

I think about George a lot. I think about him a lot more than I ever thought I would. Maybe no one else has thought about death and what it would be like to be alone and wonder if they could make it by themselves. I have, many times and at different periods of my life. When we married 67 years ago George was in the army (it was WWII) and we were apart for more than three years. Really. From October, 1942 when he left me in San Francisco until December, 1945 when he got off the train in Wisconsin that adds up to three years and three months. But I don’t remember thinking about him coming home in a flag-draped coffin, no indeed. My thoughts then centered on a life together when he got home.

And that’s what I keep remembering these days. George isn’t dead. Sometimes I think it would be so much better if he were. He has Alzheimer’s and is living in a care facility 90 miles away from me. So I don’t see him every day but I think of him many, many times every day.

Like Elizabeth Barrett Browning, let me count the ways. He was always good company. At breakfast we read the morning newspaper, commenting to each other on the good and bad and ridiculous news items as we came to them. This morning the dreadful details of a fire fight between a small unit of soldiers and a gang of well-armed insurgents was headlined. The battle took place on an outpost in Godforsaken Afghanistan.

George was a young lieutenant when he went to Korea in 1950 and it is the lieutenants who are given the task of manning an “outpost” with their men. Dirty, scary work. Outposts are exactly what they sound like. A place out away from the main body of troops, usually on a hilltop, where they can observe and report on the enemy. Always a long way from friendly troops. This time it took half an hour before aircraft could get to this particular outpost with help and the result was eight good men dead, most of them young men, just starting their lives. I thought of George performing that same job so long ago and I remembered how ignorant I was of the peril he was in.

That was not a good memory. But then I thought of him when he came home and I met him at the airport. He was in uniform when he walked off the plane and looked so good and I was so proud of him. I remembered how happy I was that he was home again and I wished he could come home to me like that again, just one more time.

I wish he could remember some of these things that I remember, but he can’t. His memory is gone for good, erased by a dreadful disease. And that’s the worst part of remembering. I can never say to him, “George, do you remember the day you came home from Korea?” It’s a memory we can’t share again. I miss him so much.

This goes on all day long. My granddaughter gave me a little Chihuahua dog to keep me company. She named the puppy Vaquera, meaning “cowgirl.” Vaquera chases squirrels and tries very hard to make friends with my 12-year-old male cat. Vaquera doesn’t have any idea of the danger she is in when she tries to be friendly with that cat. The cat is bigger than the dog and could tear her to pieces without breaking a sweat. But he doesn’t. He just stalks off in a high dudgeon. I compare the cat and dog to Mr. Wilson and Dennis the Menace. Then I remember how that cat was always George’s cat. It followed him around the house, slept in his chair until George pushed him out, and always came to meet and greet George whenever he was away for a time. I think the cat misses George as much as I do. And when I see the silly little dog chasing a squirrel that she honestly believes she can catch I want to call George to come and watch. But no, we’ll never enjoy little things like that together again.

And so the day goes by. Remembering so much. I fried bacon for a BLT sandwich at noon and thought, “Good. I can let it all get brown and crispy the way I like it.” George liked it just the opposite. I wondered if he ever got BLT sandwiches where he is now. Probably not.Then more remembering, about the time I fried out a whole pound of bacon and we ate it with plain bread and butter and hot coffee on a very cold day when we were camping out in the woods.

There is nothing in this world that I can do or think about that doesn’t bring up another memory of the times we had together. I suppose I should be grateful for so many good memories but it’s hard. I just want him to be able to come home and remember them with me.

- - - - -

Beverly has other posts on Wednesday's Woman including:
 Military Widows
 I Am Woman; I Am Strong


Molly Brown, DMS

"Will Women Wait Another 50 Years for a Fair Wage?" is posted 4/23 on Lyn's Circle.

Becoming the Parent of Your Parent





Beverly Isenberg, a careprovider for many years, struggles with the question, "What can you say to your mother or father when you have been conditioned all your life to do what they tell you to do?"

BECOMING THE PARENT OF YOUR PARENT

By: Beverly Isenberg

Now there’s a real problem that nobody has an answer for. How do you do it? What can you say to your mother or father when you have been conditioned all your life to do what they tell you to do? How can you say, "Dad, we have to find a housekeeper for you." Or, "Mom, your driving scares me to death. Won’t you let me take you where you want to go so you don’t have to drive anymore?"

Ha! I laugh, but it is a pitiful laugh, more like a sob, because I know the question will provoke an angry reply from my father and a tearful answer from my mother. My dad will never acknowledge the soiled linens and dustbunnies in his bedroom. Tears will form in my mother’s eyes and she will tell me again that she has been driving since she was 15 years old (she is 85 now) and she doesn’t know what she will do if she can’t get to the store once in a while. What to do, what to do?

 

I don’t have the answers and they wouldn't be much help to my parents if I did for they have both passed away. But here is the paradox…… I have now become that 85 year old woman. I was 60 when I had to ask my mother to give up her car keys and 68 when I had to tell my dad his housekeeping skills weren’t doing the job. My brothers and sisters and I struggled along with the problems our elderly parents gave us and it all worked out somehow.

But now that I am that 85 year old woman I know all the problems that are fast becoming every day occurrences. My two sons and my dearest daughter are worried about me living alone. I walk with a cane since hip surgery a few years back so worry #1 is, "Mom, we’re afraid you’re going to fall." Then I get the lecture about how one out of every three people over 65 are going to have a serious fall this year. "So mom, wouldn’t you be better off in town?" I live alone in a country setting 15 miles from town. Alternately, one of them will mail me a brochure describing a delightful setting in an active adult community where I won’t have to do anything more strenuous than get myself dressed and down to eat "tastefully prepared meals in our four-star dining room." They will clean for me, do my laundry, cook my meals, offer entertainment and, "Mom, wouldn’t that be better than being all by yourself so much?" I pretend to examine the brochure in detail all the while murmuring to myself, "Yes, but it is still an old-folks home and I’m not that old, yet."

I’m just kidding myself, I know. I am certain I will eventually become one of the folks in that home for the elderly, but please, not right away.

My daughter checks in three or four times a week. She opens the refrigerator door and looks to see that the milk isn’t sour, the plastic containers of left-over food aren’t moldy, that there actually is meat and eggs and cheese and apples and oranges there for me. She glances casually (she just thinks she is being casual about it) at the medicines I keep neatly lined up on the kitchen counter. She is checking to be sure they are being used at the prescribed rate. Next, she brings out her blood-pressure machine and checks my blood pressure and heart rate. If I pass, I get to stay alone another week or so. God forbid I should fail. I would be in that old-folks home in a heartbeat. My daughter is the tough one in my family, I could brow-beat or bully my sons but never my daughter.

The phone rings with calls from the boys. My daughter has made her report to them and they will fly out to see me next month. I know they have decided that it is time for mom to go so I suppose I must do it gracefully. No sense putting them through the years of worry and fretting and consternation that my parents put me through so I will make it easy for them. I think I will surprise them mightily when I say to them next month, "I wonder if there is any space for me at that continuing care community you talked about? Do you suppose we could go and visit it?"

That’ll make their eyes snap open and their mouths stay shut! I love those kids so much and they are so good to me, how can I continue to be so selfish as to want to live at home any longer? I don’t want to be a burden and I have said it to myself so many times I have to admit that even if I am not at this very moment a heavy burden, I am the burden I said I didn’t want to be. So with a gloomy heart I believe I’ll call the real estate people tomorrow……..selling the house is going to be the hard part of unburdening my kids.

- - - -

Molly Brown, DMS

"It Was Never About the Money" is posted on my other blog, Lyn's Circle.



 



Avoiding Caregiver Isolation and Monotony






Carol D. O'Dell
, one of many caregivers sandwiched between both generations, cared for her mother through Alzheimer's and Parkinson's while raising her own family. "I'd sip on my coffee and watch my daughters head off to school and after-school jobs, and I'd watch my husband dress for work. He'd kiss me goodbye and I wanted to cry-or scream, 'Take me with you!'" On Carol's blog, she offers seven tips to avoid caregiver isolation and monotony:

Seven Tips to Avoid Caregiver Isolation and Monotony:
By Carol D. O'Dell

Find or start a caregiving co-op. Trust me, you're not the only at-home caregiver in your area. I bet there are a handful within a ten-mile radius of your home. Go to a caregiver meeting (check your senior community center, or your local elder-care association or Meet-Ups.com to find other caregiving families in your area. Why not have a one-day a week care-share day? Invite another care family over for lunch. The two of you can chat while the two care-buddies hang out. Depending on how things go, you may find that the two of you could swap and give each other a few hours off here and there.

Take an online class. Do you know there's everything from cooking lessons to guitar or foreign language lessons online? Even YouTube.com offers mini-lessons for free. You can learn how to knit, how to write a memoir, how to draw, how to change the oil in your car–all online. Learning keeps your brain active and gives you something to look forward to. Those neurons will be popping like popcorn with the joy of learning.
- - - - -

These and more tips can be found on Carol's blog. As she tells us:

"Yes, it takes effort, and you feel like a zombie most days. I hope you'll push yourself a bit because the pay-off is tremendous. Just because you're home–a lot–doesn't mean that there are amazing opportunities and friendships to be found. Get out of your old habits, peek your head out of your rabbit hole and see what interests you."

Carol's book, Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir, tells about caring for her mother. Her blog tells of mothering mother while raising her own family. This is one blog you'll want to click in your favorites if you "count pills, wash sheets, answer the same questions" and want to scream, "Take me with you!" as your family heads out the door.

Molly Brown, DMS

"Make Lilly Right" is posted on my other blog, Lyn's Circle


What To Do When Alzheimer's Strikes



Beverly Isenberg, many years a caregiver for a husband with Alzheimer’s, recently placed her husband in a care facility. Now she struggles “to find some way to pay the horrible bills that pour in every month for care.”

WHAT TO DO WHEN ALZHEIMER’S STRIKES
By Beverly Isenberg



An article under this headline came up on my email this morning. I clicked on it right away, hoping there might be something new. There wasn’t. Oh, the information was correct and well presented and probably would be valuable to someone just beginning to fact the hell of Alzheimer’s. But sadly, nothing for me that I didn’t already know or hadn’t tried.

What was I looking for? I’ll be happy to shout the answer out loud and clear. Money! Financing! A clue to find some way to pay the horrible bills that pour in every month for care, for medicine, for living expenses. Some comments on my posts in the past few days have been straight to the point. One of them said it succinctly: “You have to be either very poor or very rich to care for an Alzheimer’s patient.” Otherwise you will soon find yourself among the very poor, the very sick, or a mental patient yourself.

A decent, caring Alzheimer’s facility costs about $4,000 a month. There they will try to keep the patient (your loved one) warm and dry and clean and fed and perhaps even amused and fit. They will play little games with the patient in a group setting, try to stimulate his mind, see that he is properly bathed and dressed in clean clothes with his hair combed and his beard shaved. Someone will cut up his food into small bites, check him over for bruises or sniffles or something that might indicate a fall or an oncoming cold and clean up after him when he doesn’t quite make it to the bathroom on time. All the things you once did for him are taken care of by someone trained to care for Alzheimer’s people. They do these things 24 hours every day, 7 days every week, always smiling, always in good humor no matter how annoying the patient becomes. Let me tell you, they earn every penny of that monstrous $4,000 you pay them each month.

It ain’t easy forking over that amount of money. No indeed. It is ruinous. Before Alzheimer’s struck we lived on a pension of about $5,000 a month. That seemed like a goodly sum in the beginning and we managed very nicely, thank you very much. But no more. You do the math! The remaining $1,000 has to cover car insurance, gas money, groceries, medicines, clothes, TV, telephone, internet access, heat and light, etc. etc. etc. Am I complaining? No. Definitely not! It would be simple to whine, “That just isn’t fair! I am bankrupting myself to keep that old man quiet and comfortable while I live on rice and beans.” No one ever told me that life was going to be fair. No, not at all. You worked, you learned, your saved a little and you always hoped for the best. But the best is not coming my way, now or ever.

So that is what I was hoping to find in that latest article on this nasty disease, “What to do when Alzheimer’s strikes.” What a great thing it would be to pick up the paper one day soon and learn that as part of the national recovery plan the president was going to help the middle income caregivers finance the extreme cost of caregiving!

This isn’t such a wild idea, is it? Over and over I hear the financial pundits preaching that the recovery from the recession will start only when the people begin spending again. On the other hand these same people are preaching that credit card debt and overspending are the main causes of this recession. Ha. Like it is our fault that Wall Street blew off billions of dollars gambling on ETFs and please! I don’t want to go there. But I do want to say that I would happily spend a lot of money on a new car (mine is 10 years old), new shoes, new clothes, a new hairdo, and even a fancy restaurant dinner now and then. Well now, I can dream, can’t I?

I also hear the pundits complaining mightily about the cost of incarcerating the thousands of people locked up in our prisons. The cost is in excess of $10,000 a month they say. I am still not complaining but doesn’t that seem like a lot of money to keep a murderer or a rapist comfortably fed and clothed and entertained while a caregiver worries and frets about how she will pay the property taxes due next month, and the rent and the rest of the cost of just existing?

Well, I have posed a pretty problem. No, that’s not correct. I have exposed a dirty, rotten little secret. There is no help now or in the future for family members who are caregivers to a loved one. Theirs is the burden till death provides an exit.

- - - -

Molly Brown, DMS

"Women Deserve Fair Pay" is on my other blog, Lyn's Circle.

No Longer a Caregiver


When you are no longer a caregiver, you are often alone– alone and lonely in a suddenly empty house. Beverly Isenberg is one of those lonely women– grieving the loss of her lover and friend, trying to struggle through each day tired and alone, “beat down and done with.”

Loneliness

They took George away from me today. My son and my daughter (actually, our son and daughter) packed a suitcase with his clothes and shaving gear and medicines, and put him and his belongings in the car and drove off. He gave me a cheerful goodbye wave and I watched my life and my love drive off. He doesn't know where he is going or that he won't ever come back home again. The tears were running down my cheeks and my nose was streaming too. I couldn’t catch my breath. “Oh, Bev, don’t cry so hard,” my sister said. “You know it had to happen. You can’t take care of him properly anymore and he is going to such a nice place where they will give him the attention he needs.”

“What bull pucky,” I thought although I couldn’t say it aloud. My dear sister had just given up 4 months of her life to care for both of us. Me recovering from breast cancer and George with never ending Alzheimer’s. And in spite of her best efforts and those of my daughter there was George leaving me, probably forever. Alzheimer’s is an unforgiving disease that never goes away or gives up and breast cancer is about as ugly as it gets. So what was my problem?

Remorse! I hadn’t done my best. Regret! I had failed. Guilt! I should have tried harder. I could have done more. Surely there was something I had overlooked doing or they wouldn’t have taken him away from me. Sorrow! So many times lately I had lost my temper and been cross and crabby and downright mean. God knows, I didn’t mean to think and even speak those wicked thoughts but I did. And now I’m alone. George is gone. Not dead, not dying, not even with a bad cold, but gone from my care and I have no one.

My sister left the next week and my son and daughter flew back to their homes in another state and I was alone. Alone for the first time in almost my whole entire life to discover what true loneliness is. Married at 18, I am now 85 years old and I have been George’s wife and lover and caretaker and sweetheart for 67 years. How can I describe it when part of me has been torn out. Breast cancer? A piece of cake. Heart attack? You’ll get over it. Ulcer? Forget about it. But loneliness? It is with you ever second, every minute of the day and night.

Breakfast? A piece of toast and a cup of coffee. And why should I bother to comb my hair and pat a little makeup on my face? Who is going to see me now? Who is there I need and want to look ‘nice’ for? Nobody. The garden needs attention. So what? Why bother? Who needs to see beauty in the flowers and shrubs around our house. I sit in front of the TV aimlessly clicking through the channels. Everything seems stupid and boring. Do I care if Octomom has more kids than the old lady who lived in a shoe? No. Does it bother me at all that Kate and John are separating? Not a bit. Do I care about anything? Not one iota.

Lunch. What should I eat? Who cares? Maybe a bowl of soup if there’s any in the cupboard. And now what to do? Dust? Vacuum? Not interested. I work a crossword puzzle from the daily paper and then put a few pieces together in a jigsaw puzzle I have spread out on the dining room table. More TV. More junk news. Is this all that is left for me?

Supper. A TV dinner, although I doubt Marie Callendar would like to have her meals called TV dinners. But that’s what they are. Maybe I will make a salad and maybe I won’t. Nothing seems to matter. I’ll fire up my computer and see if there is any email from friends. Of course there will be. I have the dearest friends in the world but there is just one problem……they aren’t here. They are mostly scattered around the world. In Tucson, in Colorado Springs, in Seattle, in Portland, in Wisconsin, in other California cities. And I am here because last year we decided it would be good to settle someplace near at least one of our children. Which we did and which is jolly except I haven’t had a chance to make any serious friends yet. Just acquaintances. Up until last year we lived a nomad’s life, following the sun so to speak and traveling the USA.

Bedtime. The very worst time of day. Alone. George’s bed is empty and cold. I’m cold. Maybe tomorrow I’ll feel better.

I am so tired and so alone. And certainly, I am not that strong woman my grandkids think I am. I am just beat down and done with.

By: Beverly Isenberg

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Molly Brown, DMS

"Monserrate and Parker: Political Bullies" is on my other blog, Lyn's Circle.

I Am Woman; I Am Strong

 




A mother, a military wife, a care provider for a husband with Alzheimer’s, my friend Beverly Isenberg is strong-willed and smart. Born in another generation, she might have been the colonel in the Isenberg family. She smiles when family and friends suggest she needs to take time for herself– then does what she damn well pleases the minute they’re out the door. This is her story:

Self Image

The words have a fine ring to them and conjure up a number of things for you to think about. Ask yourself, what is your self image? How do you feel about yourself: what you do, the way you do it, what you think, what you think other people are thinking about you, the list goes on and on. You can get into thinking about your appearance, the way you dress, comb your hair, apply make up (or no make up) smile, walk, talk….like I said, the list goes on and on.

I once thought of myself as being a strong woman. My grandson (an army ranger first and now a special forces guy) tells me he thinks I am one of the strongest women he has ever known. “Grandma,” he says admiringly, “You can do almost anything when you’re pointed in the right direction.” Oooh, such flattery will get him everywhere.

I asked him one time, what made him think I was a strong woman, and what did that mean to him and I don’t think I was surprised by his answer. “Why, Grandma, you can do anything. You can hike, shoot, play ball, swim, sail, you’re not afraid of heights, I’ve seen you drive that Porsche at an autocross, you really don’t mind camping in a tent and I know snakes and spiders don’t spook you.” So if that is what makes a strong woman, I guess I will own up to it.

But is that all there is to being a strong woman? No indeed it isn’t. My granddaughter says I am but her reasons aren’t even on the same page as my grandson’s. My granddaughter thinks I am a strong woman because, “Grandma, you don’t take crap from anyone!” Well, whoa now, what does that mean? “It means you get people to do things right the first time. You never back away even when people start getting angry when you don’t agree with what they say or do.” Oh, granddaughter dear, that could be just because I am stubborn and truly believe I am right most of the time so we can’t accept that. Being stubborn doesn’t make you strong.

That got me to thinking. I am a pitiful wreck of a woman. Here I am, 85 years old and in really poor health. Could a truly strong woman ever let herself get in this shape? I breathe oxygen 24/7. My life depends on hauling a tank of air around with me wherever and whenever I go somewhere. My heart is dicey…..some days it chugs right along and other days it needs a kick start.

The answer to that last question, “Could a truly strong woman let herself get into bad physical condition?” is not only yes, but hell, yes! And believe me when I tell you, it happened exactly and precisely because I believed I was a strong woman.

My husband developed Alzheimer’s disease over a period of years. It came on oh, so gradually that it took me many, many years before I faced the truth. He was not merely forgetful, he honestly couldn’t remember a lot of things. Some of those things were less important than others and some of them were huge. Balancing a checkbook. Paying bills on time, taking his medicine, getting lost on the drive home, forgetting how to make coffee, to barbecue a steak, how to light a fire that burned the first time, to put gas in the car, how to play cards. The list is long and pitiful to relate but gradually everything he had always done, every chore, every activity was now my problem, my responsibility. And because I am a strong woman, I accepted that responsibility without question. If a thing needed doing, I got it done.

As years went by he needed more and more care and attention. He forgot how to get home if he went out for a walk by himself. He overdosed on his medicine, forgetting he had already taken it he took it again and again, his sleep was disturbed. Some nights he slept all night through, other nights he was awake all night and I stayed right with him for fear he would do something foolish if I wasn’t there. He emptied his wallet and gave the money to strangers who begged on street corners, and so on and on and on. But a strong woman now…..she can deal with all that. She doesn’t need that much sleep, she can control the bank account, do all the grocery shopping, buy his clothing, see that he showers and shaves regularly, drive him to his doctor visits, and never ever take more than five minutes out of the day for herself.

After a few years a strong woman becomes a foolish woman. Stress is causing her to be depressed, her health is going down hill but she doesn’t take time to see a doctor about it, and when her friends and family members ask her why she doesn’t give it up and put her husband into an Alzheimer’s care facility she replies, indignantly, “Because they won’t take care of him. They won’t understand him. Nobody can do it as good as I can.”

The end result of all this is that this strong woman has had two heart attacks, breast cancer, and developed a stomach ulcer. Her husband is in an Alzheimer’s home where he is getting good care and is as happy as ever. Being a strong woman is great if you are also a sensible, strong woman.

If your self-image is one of being invincible, and in charge, think it over. Learn that when a strong person needs help occasionally and asks for it and accepts it she is becoming stronger for knowing the difference between being strong and being stupid.

By: Beverly Isenberg
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Molly Brown, DMS

"Abuse a Woman: The Height of Arrogance" is on my other blog,
Lyn's Circle.