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Archive for September, 2009:
The Old Lady in the Window
Most of my childhood was spent in West Philadelphia on Cambridge Street. We were a city block of neat row houses all painted and bricked in a similar manner. Back in the mid 1950′s and early 1960′s there were lots of children on Cambridge Street. All the families knew each other and adults disciplined any child on the block. For the most part, the kids were well behaved with a notable exception. We all teased the old lady in the window.
Kids Can Be Mean
The houses at the end of the street faced a different direction and had a side window that was probably a kitchen window. In one of those houses there was on old lady who would sit in the window. I don’t know how old she was, but when you’re 7 or 8 years old everyone one over 20 is old. I remember this woman was very thin and looked frail. Her hair was wiry, wild and white and she had these piercing black eyes that looked mean. She sat in that window day after day, watching the kids play. She never spoke, but sometimes reached toward us like she wanted a touch. When she would reach toward us we would take off running and yell “The witch is gonna get you.”
When I look back and remember this woman, I realize that she was just a lonely old lady who probably had some form of dementia. That window was her only contact with the outside world and we were a source of remote companionship for her. When she reached out, it was for a little human contact. I know that kids can be cruel but I wonder why the adults on the street never chastised us for teasing the old lady and calling her a witch.
Back then I hadn’t heard the terms dementia and Alzheimer’s. Some people called her the crazy old lady on the corner and some said she’s just old and doty. At this point in my life, I’m pretty sure she had some type of dementia. I don’t know if anyone was home with her during the day or if she was there alone. She just seemed to sit in that window for hours.
We’ve Come A Long Way
This morning I let Gladys sleep late. We’ve had bad storms and flooding in the Atlanta area and a lot of roads, schools and businesses are closed, including Gladys day care; so I didn’t have to get her ready to go anywhere. Anyway, when I got her up, her hair was wild and disheveled. She reminded me of the old lady in the window and I remembered how the kids on Cambridge Street used to treat that lady.
We’ve come a long way in understanding dementia and how it affects people. We understand the need to keep them socialized as long as possible. We know there are medications that can slow the progression of dementia. We know the importance of music and familiar things. There has been so much progress in treatment and care. Still, I wonder how much progress has been made in helping family members understand the disease.
How many old ladies are sitting in the window because their families aren’t aware of options? Here’s the saddest part of dementia. Most of us, including me, don’t learn anything about dementia until we are faced with caring for someone with dementia.
The Need To Prepare
When we were young and having babies, we took classes to help prepare us for childbirth. Some of us took parenting classes. All of us asked family and friends lots of questions about what to expect once we got our little babies home. Just like we prepared ourselves to take care of our children, we need to prepare ourselves to take care of our parents.
How do we help others understand the need for this type of preparation? Comments? Suggestions?
I Finally Had to Lock Her Up
Wait, it’s not what you think. Don’t call the department of family services or report us for elder abuse. This is just another way that I have learned to work smarter and not harder.
Over the past few months several changes have occurred with Gladys: 1) she has become incontinent, 2) she doesn’t remember to pull her underpants down when she uses the toilet and 3) she can’t judge where is she in relation to a chair (or toilet seat). As a result of #3 she usually straddles the arm of the chair so when she tries to sit down, she doesn’t know what is wrong and she thinks she is going to fall. Gladys is deathly afraid of falling.
Several times a day, we have to talk Gladys into her seat when she has straddled the chair. We have to tell her to move forward; move to the right; move over some more; back up, ok, now sit down. It’s a little frustrating during the day, but at night it’s major drama. At night, especially when she awakens during the night, Gladys’ ability to understand is almost non-existent.
The Last Straw
For several nights in a row, Gladys got up to use her bedside commode and instead of sitting on the seat, sat on the arm. She was straddled. This didn’t happen once per night, it happened several times. Now remember I told you two things 1) she has a fear of falling and 2) at night her understanding is almost non-existent. As a result, I can’t talk her out of the straddle. And because she’s afraid, she stiffens all of her limbs and locks them tight, therefore, I can’t guide her out of the straddle either. So now, I have to wake up my husband so he can put her in the bed.
After a few nights of this, I had to come up with a better solution. I was getting no sleep at all because once you wake me up at 3 AM and stress me out, I can’t go back to sleep. Fred, of course, is asleep as soon as his head hits the pillow.
The Solution
I decided to lift both rails on her hospital bed, which essentially locks her up. Fred thought this was a terrible ideas because it keeps her from getting up to use the bedside commode. My response was, “What difference does it make?” When she goes by herself she forgets to pull her underwear down, so in terms of wetting herself, nothing changes. So with the extra-absorbent briefs and washable bed pads, it’s all good.
The Question
Will Gladys wake up at night and call me to let her out of the bed? It’s been a month now and it hasn’t happened. I don’t know what it is about those rails but she doesn’t fuss or question them, she adjusted to them immediately. The cat, however, wouldn’t sleep on Gladys’ bed when I first pulled up both sides. I think she had flashbacks of the cage she was in before I adopted her from the shelter. She’s ok now.
The Result
I haven’t slept so good in months. I’m happy, Fred’s happy, Gladys is happy. No more exhausted, cranky mornings for me. I wake up refreshed. Ahhhhhhhhhh! If you’ve heard the saying, “When momma ain’t happy ain’t nobody happy.” Believe it!
The Stages of Dementia
This article is courtesy of Shelley Webb from The Eldercare Support Group. It was published in her August newsletter and I asked for permission to reprint it on A Caregivers Journal. Shelley is a registered nurse who takes care of her father who has dementia. She learned this in a class taught by Susan Coulter, LCSW. You can follow Shelley on Twitter at www.Twitter.com/EldercareRN.
Stage 1: Early Forgetfulness
Forgets names and events. Is occasionally lost. Decisions are hard to make. May realize that they are forgetful. Accuses others of actions. May be angry, irritable, demanding and/or stubborn.
The purpose of these actions are to defend against fears and to compensate for mistakes that are made. Their need is to feel competent and as able to function as well as they were before.
Strategies for dealing with this stage are to use “non-critical verbal reminders,” lists, and reassurances. At this point, you may consider having an assessment done and although it would be impossible to diagnose Alzheimer’s at this point, other causes for the symptoms might be found.
Stage 2: Early Confusion – Mild Dementia
Has concrete thinking; leaves out substitutes words. Has increased short-term memory loss. May get lost. May withdraw socially. Denies forgetting. Is more self-centered and defensive.
The purpose of these actions are to avoid embarrassment and cope with helplessness. Their needs are to have their fears dealt with, to have their defensive reactions understand and to address any depression that may be present.
Strategies for dealing with this stage are to allow the person to talk about their fears; validate their feelings, use simple directions, and avoid confrontations. There are also some memory enhancement techniques that may be used if the person is willing to try them.
Stage 3: Moderate Dementia
Uses phrases instead of sentences; is easily disoriented; has difficulty with instructions, poor concentration; has decreased visual field; tends to hide (or hoard) things; asks repetitive questions or repeats some statement numerous times. Clings; angers easily.
The purpose of these actions are an attempt to orient himself/herself, to organize their thoughts and to maintain a sense of self (or person). Their needs are to have less responsibility, to avoid situations they can’t handle and to be able to depend upon a safe, reliable person.
Strategies for dealing with this stage are to use short, simple phrases and instructions. Demonstrate what you would like him or her to do; use pictures; speak slowly; structure activities; and offer “jobs” according to his or her ability to perform them (these are mostly jobs to help them feel productive and useful).
Stage 4: Advanced Moderate Dementia
Cannot complete thoughts; cannot understand or interpret what is happening; has no ability to use logic; may wander; wants to “go home;” moves objects; is unpredictable. The purpose for these actions is that he or she is searching for the familiar or acting out a previous role that they once held; they may also be reacting to misunderstood information.
Stage 5: Severe Dementia
There is almost no comprehension; they are often anxious; they may recognize familiar faces but not names; often incontinent; only smiles and babbles – uses “word salad” (a mismatched jumble of words); pacing is often seen; reactions are impulsive; is easily combative; may hallucinate, yell or exhibit sexual behavior.
The purpose of these actions are mostly a reaction to feeling confused, anxious, or suffering from hallucinations and/or delusions. The needs in this stage are more for personal protection from themselves such as wandering or trying to do chores that they were previously able to do (such as cooking). They need help to comprehend and to be kept in a safe environment.
Strategies to use in this stage include the careful use of touch, smiling, soothing music, offering foods that they enjoy and can eat. Medications sometimes become necessary to help to decrease the anxiety or distress since it is difficult for them to process information.
Stages 6-7: Very Severe Dementia
There is little or no speech; they are bedridden and incontinent; often have difficulty swallowing; they may gaze but there is little reaction to any stimuli; usually passive at this point. The actions in this stage are mostly instinctual.
Their needs now are for total care – feeding, bathing, dressing, movement (such as range of motion exercises to prevent contractures) repositioning if bed-ridden. Strategies in this stage are to be attentive to primary care details such as repositioning in bed in order to prevent bed sores, massaging boney prominences such as elbows, heels, knees, hips, buttocks etc, also in order to prevent bed sores. Touch is good and it is important to talk reassuringly even though we are not sure if there is any understanding.
I have learned that in dementia, there is one prominent rule and that is that there are no rules. A person with dementia may be in one stage on a certain day and by the next day (or hour), they may be in a different stage. They may have only some or all of the characteristics listed here. They may also bypass a certain stage completely.
I found that in understanding the stages of dementia and having methods in place for future use that I was less frightened when I recognized new or different behaviors in my father. My father hasn’t gone through all the stages but in knowing them, I was also able to determine at what point I would need or want to consider alternate living arrangements.
I hope that this information will bring some comfort to you and your decisions as you care for your aging loved one.
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Thanks again to Shelly Webb for allowing A Caregivers Journal to reprint this article. Shelley’s website is www.takingcareofthefolks.com
