CONTINUING ALZHEIMERS AND PARKINSON'S DISEASE

     Some of the symptoms, such as paranoia, delusions, depression, agitation, sleeplessness and anxiety, can be managed with a variety of medications.  It is also important to see that the patient gets physical exercise and social activities, which are vitally important to good physical and mental health.  Of course, good nutrition is also very important for the patient.

     Big Crosby died after eighteen holes of golf in Spain.  He had a massive heart attack--he died quickly with dignity.  He died after doing what he enjoyed most in life---playing golf.  What a way to go!

     This is not, however, how an Alzheimer’s patient goes.  Most Alzheimer’s patients will progressively get worse for seven years, sometimes as long as fifteen years.

     Alzheimer’s and Parkinson’s diseases both viciously attack the body.  Alzheimer’s ravages the brain and Parkinson’s attacks the nervous system.  Both conditions can reduce a big strapping man to a bent over, doddering old man with urine-stained pants.  The one thing we all dread can strike the ones you love so quickly, and there is little we can do about it.

     One and a half million elderly Americans are afflicted with Parkinson’s disease and four million with Alzheimer’s and these groups are growing.  Serious illness means that their “golden years” aren’t so golden anymore.

     Taking a loved one who suffers from either condition into your home can trap you between compassion and frustration.  Your life is disrupted by an incontinent person who is almost childlike, but one that you love dearly.  What do you do?

     You take them in and do the best you can for them.  If you have small children as well it makes the job even harder.  But at least you know they are safe.

     If you are lucky there is an adult day care center in your community that can help you during the day, and maybe a friend or two to take your patient on an outing once-in- awhile, to ease the day for them and for you.

     When the time comes that you can no longer give the care they need, then a special home becomes a place in which they are placed to spend their last months or years, away from everyone they love.  It may tear your heart right out of you, but at least you have the satisfaction of knowing you did everything you could for your loved one, no matter how difficult it was at the time.

     No matter whether the problem is Alzheimer’s, Parkinson’s disease, or simply old age, we are not responsible for the happiness of our aging parents any more than we are responsible for the happiness of our children, spouses, or siblings.  People are responsible for their own happiness. You can provide for some of their needs, but you can’t turn back the clock and make them young again.

     It is too bad we can’t all go like Bing Crosby did, quickly and with dignity.

ALZHEIMER’S AND PARKINSON’S

     Sitting in the chair next to the window, with the sunlight warming her wrinkled face, she looks like she might be sleeping.  But, the only thing sleeping is her mind.  She is in the late stages of Alzheimer’s disease.  Forgotten are all of life’s beautiful memories that should be comforting her in her declining years.  Gone are the visions of her children playing in the yard as they grew up.  Even her husband is a stranger now.  She looks at him with vacant eyes, a prisoner in her own mind.  She just sits alone in her room day after day, unable to care for her own needs, waiting for the inevitable---death.

    It’s a devastating picture to paint, but it is true all too often with Alzheimer’s patients.  This insidious disease tears your heart out, as you watch someone you love sink deeper and deeper into themselves, until there is nothing left of a once vibrant individual.

     Alzheimer’s disease does strange things to people.  In the early stages, it can be difficult to distinguish from ordinary forgetfulness.  But, eventually it will rob your loved one of all memory, even of the day-to-day routine of living.  They will forget how to dress, wash, pay bills, or even how to figure our what that bill is for.  They won’t remember how to write a check to pay the bill.  They will ask the same question over and over again, forgetting that they already asked it once.  They will forget how to tie their shoes, or they may even forget to wear their shoes.  They will misplace things, or hide them in strange places.

     These once dynamic people are shut down by the slow deterioration of their brains.  What is Alzheimer’s disease?  It is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior.  It affects an estimated four million adults in American.

     When the first case of Alzheimer’s was diagnosed in 1907 by a German physician named Alois Alzheimer, it was considered to be a rare disorder.  However, today it is recognized as the most common cause of dementia.

     According to Merriam Webster’s Collegiate Dictionary, dementia is a condition of deteriorated mentality often coupled with emotional apathy.  My Home Medical dictionary calls it a deterioration of intelligence.  Dementia is not a disease in itself, but a group of symptoms that characterize diseases and condition.  There are other conditions that mimic dementia, such as alcoholism, drug reactions. Thyroid disease, nutritional deficiencies, brain tumors, head trauma, and infections.

     Alzheimer’s disease is most likely to occur in an older person.  Approximately 10 percent of people sixty-five years or older are affected by Alzheimer’s disease.  As a person reaches eighty-five or above, the percentage rises to 47.2 percent.

     The families of Alzheimer’s patients feel the effects of the disease too.  The emotional cost, not to mention the social and financial cost, of care for Alzheimer’s patients is very high.  Family members work hard to keep them at home, until they can no longer deal with the problems inherent to the disease.  They risk their own health just to keep them at home, instead of placing them in an Alzheimer’s unit where they are more comfortable and easier to manage.

     There is no single test for Alzheimer’s.  It takes a complete physical, psychiatric and neurological evaluation by a team of physicians to come to a diagnosis of Alzheimer’s disease.  These tests should include a complete medical history, a test of mental status, a complete blood work-up, a urinalysis a chest X-ray, an electroencephalogram (EEG), a computerized tomography (CT scan), and an EKG (electrocardiogram).  This should tell the physicians if it is indeed Alzheimer’s or if the dementia is caused by some other, treatable condition.  They can make a diagnosis that is 90 percent accurate.

     Although there is no cure for Alzheimer’s disease at this time, there are reasons to hope.  New research is ongoing and promising breakthroughs are expected.  With the pharmaceutical companies testing and working to develop new medicines to fight this debilitating disorder, there is hope that Alzheimer’s will be a more treatable disease soon.

Stoke continued

     When the right side of the brain is damaged, the left side of the body is paralyzed and the patient has difficulty with judging distance, size, position, and rate of movement.  Sometimes we tend to overlook our other abilities because we put such emphasis on speaking.  If stroke victims can talk and understand speech, we assume they are unimpaired, but it might still be difficult for them to care for themselves.

     Remember a time when you were preoccupied while walking up the stairs, and you thought there was another stair but there wasn’t?  You were jarred when there wasn’t a place to put your foot.  Or, have you ever been reading and tried to put your coffee cup on the end table and missed the edge?  These are some of the common mishaps of a right-brain-damaged victim, because their perception is impaired.  They may not be able to get their wheelchair through a large doorway without bumping the frame, or read a newspaper or add a column of figures, because they lose their place on the page.  It’s important to know their limitations so you don’t misjudge your patient or think that they are being uncooperative, unmotivated, or confused.

     Right brain damage may also cause the stroke patient to overestimate their ability to perform easy tasks.  Sometimes they are unaware of their limitations and dive right in.  However, if they act too fast they can fall or hurt themselves.

     If you suspect this overconfidence, ask them to demonstrate their task before you let them go forth.  If they can handle the task, fine, but sometimes they can’t and you have to prove it to then.

     If you are having trouble teaching them a task, slow down and talk them through it.  Words are more effective than hand motions.  Take it slow and easy.

     Stroke patients can also have visual field defects.  Perhaps their vision is only half there and they may have difficulty seeing to one side or another.  Make sure their room isn’t cluttered, since they could fall over something in their way.

     My husband had a unique problem with his vision.  One of his eyes reversed itself.  Before his stroke it was nearsighted and now it is farsighted.  He also had a cataract develop on the right eye, but even after it was removed he couldn’t see peripherally, so it made it difficult for him to read.  He would lose his place because of his tunnel vision.

     There will be more problems with behavior, depression, brooding, forgetfulness and many other things to numerous to mention.  Each stroke victim is different.  A mild-mannered man may begin cursing and an extrovert may become introverted.  It is up to us to evaluate the problems and deal with them as best we can.  Use your ingenuity.  Be sure to discuss anything you don’t understand with your physician.  He can suggest ways to deal with each unique situation as it comes up.

     Stroke leaves an enormous impact: memory is lost, routine is forgotten, emotions surface, crying is not unusual, there is sensory loss, and depression often results.

     Healing comes from within, not just healing of the body, but healing of the mind with determination and hard work. The doctors take care of the body, but the mind is a different story.  It may snap back or it may take years to bring back even normal responses.  Be patient...it’s worth all the work you do.

Stoke continued

     Another problem with aphasic people is that they may not understand what you are saying.  Your voice might seem incomprehensible or sound like static to them.  If you think this is the case, your non-verbal skills will come in handy.  But, don’t make the mistake of believing that they understand everything, just because they smile or shake their heads when you talk.  Sometimes it is a good idea to test them by asking a question and see what their answer is.  If you say, “It’s a nice rainy day today” and they smile and nod to indicate yes, when it is actually sunny outside, you know that they are responding to the sound of your voice instead of your words.  Don’t overestimate their ability to understand you.

     If they really don’t understand you, they may get frustrated, irritated or uncooperative.  Many times a perceived lack of cooperation is simply because they don’t understand you.

     Keep your voice soft and steady.  There is no need to speak loudly; they aren’t deaf, they just have a problem understanding.  Of course, sometimes their hearing is affected.  Then you must speak loud and slow to make them understand.  You can assess their needs as you work with them.

     Even the simplest thing, like putting on a shirt, can be difficult for a stroke patient.  Stroke victims need positive reinforcement on a regular basis, especially when they try to learn something new, or work to regain their skills. That’s when they need you to tell them that they are doing fine, offering encouragement for each small success.  Give feedback right away---don’t wait until they finish the task before saying something.  Too much feedback is better than not enough

     I know that my husband was unsure of his footing and was afraid that he might fall.  When I put his physical therapy belt around his waist, I found it much easier to help him keep his balance.  A physical therapy belt is a strong fabric belt with a Velcro closure.  They are available through your local home health program.  If you don’t have such a belt, use a regular belt, anything that you can hold on to as your patient walks along.  It gives them the secure feeling that is needed while they practice their task.

To be continued.

Chapter 12 STROKE

     After my husband’s stroke, i knew that he would have problems using his arm and leg, but I couldn’t understand why he was so emotional.  He also kept bumping into things when he tried to walk, because his balance was poor.  There were so many questions about his condition, yet so few answers.

     I started doing research on stroke victims and found answers that helped me care for him.  When you understand what is happening to your patient, it makes it easier to tailor their care.

     After suffering a stroke there are often many behavioral changes.  Besides physical changes caused by brain damage, it was a surprise to see intellectual, emotional and behavioral changes as well.

     A stroke affects the brain by interrupting the blood flow to the brain cells, thus causing injury.  If the left side of the brain is damaged it affects the right side of the body and if the right side is damaged, the left side of the body if affected.

     All stroke patients are not alike.  It’s a mistake to think they are.  A stroke generally won’t affect all areas of the brain or its functions equally.  Each stroke victim will be different, depending on what part of the brain is damaged and the severity and type of damage.  Their recovery also depends on how recently the stroke occurred and their previous personality and behavior.

     While some parts of the brain will function normally, others parts won’t.  Your patient may seem as capable as ever when performing one mental task, but he totally unable to handle another task of seemingly equal difficulty.

     Of course, as with many illnesses, there will be good days and bad days, and even changes from hour to hour.  You should ask a lot of questions of the doctor to better understand the patient’s condition and treatment.  It’s hard to pinpoint all the changes that a stroke brings, so be alert to your patient’s needs and try to observe small behaviors so you can question the doctor about them.  It helps to write down your questions so you won’t forget.

     If there is left-brain damage, the right side of the body could be paralyzed or impaired.  People paralyzed on the right side, who are also right-handed are likely to have problems with speech and language, or aphasia.  The stroke victim may be able to understand what you are saying, but not able to speak or write to communicate.  Most aphasic people will have some trouble with both speaking and understanding.  But just because they have trouble speaking doesn’t mean that they can’t communicate.  Perhaps they can write their questions and needs on paper, or use gestures to communicate.  Experiment with different modes, using whatever it takes to keep in touch.

     Don’t isolate your patient; treat them as though they were functioning normally.  Talk with them as you are performing your duties, even though they may not be able to answer.  If they don’t understand your words, try using hand gestures or other forms of non-verbal communication.  If they use the wrong words, such as calling a cat “edak” or something equally strange, remember that they believe they are saying cat.

   

To be continued.

     

More about the end almost

     I went back to my little room to wait for Casey. The relief I felt when I saw my daughter’s face at the door of my little room was overwhelming.  We hugged me tight and the tears came again.  I knew that with her by my side, I could face whatever was coming.  Our granddaughter, Nikki, came with her mother---she wouldn’t stay away.She loved her grandpa.  She started to cry as well, frightened by our tears.

     I took Nikki and Casey back to see Wayne.  He was still unconscious, but Casey and I took his hand and squeezed it.  Casey talked to him and held his hand tight.  Finally, after what seemed like an eternity, his eyes started to open.  He saw me and Casey and tried to talk, but the tube down his throat was pressing on his larynx and he couldn’t make a noise.  We explained to him what had happened and he seemed to calm down a little.  We stayed for a short time and then had to leave.

     Nikki took her great-grandmother out to lunch and Casey and I talked with some friends who had stopped by to see us at the apartment.  After we knew that Wayne was stable, we too, ate some dinner.  My appetite was small, but I hadn’t eaten all day and I knew it would be a long night.

     After we ate, we returned to see him again.  The nurse said his blood pressure was staying up and we could rest easy tonight.  She would call us at the apartment if there was any change.  It was a restless night for all of us.  We finally told my mother about Wayne’s condition, now that we were sure he was stable.

     As I lay on the bed in the overheated apartment, I found it hard to control my emotions.  I wept, my mind full of questions about Wayne’s condition.  What am I going to do?  When I take him home, what will his prognosis be?  Is he going to be functioning?  Will he make it?  I couldn’t bear to be without him.  It’s strange how everything in your life can change in a heartbeat.

     What a dreadful time that was...I don’t want to go through that ever again.  Needless to say, he kept his colostomy, for the time being anyway.  No more anesthetic until he was better able to handle it.

     In times like these, you need family and friends to help you through.  It is too difficult to handle experiences like this alone.  Emotional support is vitally important.  Whether it’s family, friends, or your pastor, you need support.

     There are also many support groups.  Be sure to check with your hospital to find the support you need.  If there is not a support group in your area, start one.  You will find that there are many people in your community who also need help and support.  Your hospital Social Service worker will give you the help you need to get a group started.

                                 Thought for the Day

                     I have been driven many times to my knees by the

                    overwhelming conviction that I had nowhere else to go.

                                                             

                                                         Abraham Lincoln

THE END...ALMOST

     THE END---ALMOST

     About four months into Wayne’s illness, he began to regain his strength and was able to walk a little  He was eating and gaining weight, but he was constantly complaining about  his colostomy itching so terribly.  We discussed this with the doctor and he said that we could reverse it or keep it, whichever was best for us.  We talked with all the doctors that would be working with him if we reversed his colostomy, and they decided to take him to surgery and reverse it for us.

     Soon after Wayne entered the hospital to have his colostomy reversal, the staff began cleaning out his intestines to ready him for surgery.  After pleading with Wayne for an hour, he finally drank the briny solution that was required to do the job.  It was about as unpleasant as anything I have ever tasted.  Yes, I tasted it just to understand what Wayne was going through.

     Wayne’s colostomy bag was removed to give him an enema directly into the exposed intestine or stoma.  However, the nurse didn’t get it back in time.  You guessed it, the enema began to work and the flood was on.  What a mess.  I rang for the nurse and tried to contain the overflow to the bed with paper towels and washcloths.  A call was put in to Bridget, the enterostomal therapy nurse.  She brought in a unique bag to attach around his stoma.

     It was a con-shaped bag, about twenty-four inches long, with a “zip lock” top and a clamp on the bottom.  She glued on the base as usual, then attached the long bag with a top that closed like Tupperware, It was a good fit.  Now, when the nurse had to give him more Fleets enema, she could simply open the zip lock top to administer the liquid and open the smaller end to release the waste.

     Pretty ingenious, I’d say, and the bag held a lot so the nurse didn’t have to come in to check it too often.

     You can learn a lot by watching the nurses in action and by asking many questions.  When the nurses know you are interested, they will take more time to explain every procedure to you.  This will give you the opportunity to become involved in every aspect of your loved one’s care.

     Wayne was ready for the reversal of his colostomy and he went into surgery the next morning at 7:30 a.m.  As the anesthesiologist began giving him an epidural block, his blood pressure dropped to twenty and his heart stopped beating.

     The surgery team thumped his chest and started CPR.  Finally his heart began to beat again.  The doctor came out to tell me what had happened, then ushered me to the cardiac unit and led me to a little room by myself.  I knew the situation was really bad when they put me in this little room reserved for families of critical patients.

     The doctors worked on him feverishly.  Wayne’s blood pressure had dripped back to twenty and heart stopped again and again.  This went on four more times before they got him stabilized and administered medication to return his blood pressure to normal.

     It’s strange how a man who had always suffered from high blood pressure, which caused his kidney damage in the first place, now had blood pressure so low it stopped his heart.  The doctor came out to see me, telling me his condition was touch and go.  The next few hours would be critical.  If his blood pressure stayed up, he had a chance; if not we were going to lose him.  He could die! Actually, he did, four times already.

     I struggled to prepare myself for the worst.  I told myself it might be for the best--if he had been without oxygen for too long he might have suffered brain damage.  However, I couldn’t convince myself of that.  I was panic-stricken.  There was no one to talk to.  If I told my mother about Wayne’s condition, with her bad heart, she too could have a heart attack.  She loved Wayne like a son.  I tried to be strong and I think I might have made it if I hadn’t called my daughter to tell her of her father‘s condition.  That’s when I lost it.

     The tears were rolling down my cheeks when I told her the worst might happen.  Until then I was holding it together, but somehow putting it into words brought it home to me.  I broke down and cried with fear.  Fear of losing the man I had been married to for forty-five years.  I wondered how I could handle all this alone.  I wished that Casey were there with me.  I sat in that room, alone with my thoughts, for what seemed like a lifetime, remembering all the good times in our marriage, our children, our life, all the times we needed each other.  Now I might not have him to share any more good times.

     Casey was packed and ready to go to a golf tournament when she answered my call.  She dropped everything and broke all the speed limits traveling the 168 miles from Boardman to Portland.

     Not long after I talked with Casey, Wayne’s doctor escorted me to the cardiac critical care unit.  Wayne lay on sterile white sheets, his color as grey as death, with IV’s trailing out of both sides of his neck and arm.  There was a tube down his throat and into his lungs that was breathing for him.  The nurse suctioned fluid out of the tube from time to time.  His hands were tied to the bed, so he couldn’t pull at the tube and IV’s and he was unconscious.  He looked so helpless, so vulnerable.  Tears rolled down my cheeks, as the nurse put her arm around me to comfort me.

     Bridget, the enterostomal therapist, came in to change his colostomy bag.  She was surprised to see Wayne’s condition, when she had just wished him luck the night before.  When she hugged me I felt tears once again.

     He started to choke and I could hear his chest rattle.  I thought of the death rattle people talk about, wondering if this was going to be his last breath.  I was afraid if his heart didn’t fail, he might die of pneumonia with his lungs so full,  I took his hand, but there was no response.  I had to leave when they were suctioning out his lungs again.  I couldn’t take it.