Thursday, December 31, 2009

Christmas Morning 2009


Wednesday, December 30, 2009

He Ain't Heavy.....He's My Brother.....

"That is a picture of me and that is my brother"....
"That is a picture of me and that is my teacher"....

"No mom, that is a picture of you and daddy, that is your husband and this is your wedding picture"....

Silence....

I've got to go home to my mama

12-27-09      ..........?       I just haven't come up with a response to this statement mom made......

Sunday, December 27, 2009

Coal and Jewel

The Jewel....A Rare and Priceless Moment
As I was trying to slide mom over in the bed, it took a few attempts to get her in the position I wanted her in, I said to mom, "I did it, I did it"!  She smiled and patted me on the tummy, "Well, good for you"!  I said, "You're just an ole sack of tatos, are you a sack of tatos"?  She chuckled,  blue eyes twinkling as she shook her head in agreement. 


The Coal....A Sad Moment
As I was feeding mom earlier, she was whiny somewhat wiggly, and said, "I want to go home"!  I explained she was home, this was her house, her room and her bed.  She just looked at me like what are you talking about?  A few minutes later she said, "I've got to go home to my mama"!  Now that was a statement she had not made before.  I had a moment, which actually I am still having because I am not sure how to react to the statement or where to file it in my thinking.

Starting Over?

(AGAIN)

On caregiving.com, Denise posted a blog for today about starting over each day, and steps to help us do that, "When Starting Over Seems Like a Daily Duty, 10 Steps to a New Beginning".  The first thing I thought of about starting over was how I have had to start over with new nurses repeatedly.  I have shared about some of my experiences with this in other blogs.  Since we started with hospice, mother and I have gone through three nurses, we have a fill in nurse, Michael, who is terrific.  I am concerned about burn out with him becasue of the work load that he is given everyday. 
Mom's first nurse was Mary, I have written about her.  The irreplaceable Mary.  The second nurse, was a temporary fill in, she was great too, we had a good relationship.  But she was temporary while they trained the next nurse.  The "permanent" nurse came in knowing my complaints and concerns, and promising to do above and beyond to make us (me) happy.  Now apparently she is gone, family situations have pulled her away.  These things are never communicated to me directly from the office, I have dig for info myself or come to my own conclusions about them.  So, we are without a nurse again, except for ever faithful Michael, and waiting for someone else to tell the tales to and get acclamated to.  Michael was concerned I would be upset at losing this nurse and he put his hands on my shoulders, and I told him, "I have no more attachments Michael, since Mary has been gone, I learned my lesson and I am not allowing myself to get attached again".  He was relieved at that point, he knew I had had a meltdown when I found out Mary wasn't coming back.
Ok, what was the point of all this?  Ah yes, starting over.  My prescription for starting over with yet another nurse, don't get attached...don't share about family...don't ask about her family... just stick to the medical facts concerning mom....nothing more...then attachments and relationships aren't developed just to be severed.

Note:
Now this is just for me...how I am feeling and thinking right now because of dealing with this situation.

Tuesday, December 22, 2009

Caregiving is Easier With Faith?


Several months ago I was sharing some of the things I deal with in  caring for mom.  The person I was talking with, said, "Well, at least  you have the Lord in  your life, that makes it easier!"  I immediately answered with, "No, it doesn't."  I know and will state, that without the Lord, I would have never been able to handle these past years as mom's caregiver.  It is He that I can run to for help, He is a very present help in time of need.  He is my Strong Tower, the Shelter from the storm.  He is my peace, and my strength.  However, I am flesh and blood.  I make mistakes, I hurt, I grow weary, I despair, I get depressed, I get angry, I get frustrated.  I have experienced all areas of emotions possible, and I think sometimes some that are not!  But because of Him, I can face tomorrow...again and again. 

Monday, December 21, 2009

A Moment


A week or so ago, I had a moment.  I don't recall now what I was thinking.  I was in mom's room tending to her, and I looked in her eyes...and I allowed the moment to take control.  The tears came, the sobs followed.  Moments like this are few, I do not allow them to rule me, I can't afford to do that, but occasionally such as this time, they do win.  I sat in her wheelchair and quietly sobbed, until the moment had passed.  Gary had come looking for me, and found me in her room wiping off my face, and he hugged me.  No words were needed, he knew, I knew, we knew, it was a moment and it was passing....for now.

Christmas Gifts in Unexpected Places!



Well, Christmas gifts came in a much unexpected form this year!  I had entered the caregiving.com Holiday Progressive blog contest earlier this month.  It was a way to get to know other caregiver bloggers and also to get my blog site known.  Denise Brown, the founder of caregiving.com asked me and Delores(another caregiver blogger), to be guests on her blogtalkradio show the last day of the contest.  What fun was that?!  That was a first for me, interviewed on talk radio!  I enjoyed talking with Denise about some of my experiences, and blogs I have written.  Then, last week I received an email from Denise telling me I had won the Grand Prize for the contest!  I have 3 sessions with Denise coming a value of $225.00!  Already have my discussion questions written down!  Interesting Dec. full of surprises!

Thursday, December 17, 2009

Still Sassy at Her Age!

Was feeding mom her nutritional chocolate pudding awhile ago, and she reached up with her finger and swiped a dab of it from the corner of her mouth, and licked off her finger.  I said no, no we don't use our finger to wipe our mouth and then lick it off, we use this wipe cloth to do that.  As I was looking at her, she stuck her tongue out at me....I told her she was a sassy one!  Lol!

Wednesday, December 16, 2009

Mary

7-24-09
I learned something of critical importance in this world of caregiving. It is not just that I am a caregiver, but I too am in need of being cared for, I need a caregiver. When I applied for hospice for mom, the nurse that came over was like sunshine and joy walking through my door.  She was the most caring and compassionate person I had ever met.  I looked forward to each time she was coming to see mom, because her visit always cheered me up and made my day brighter.

Not too long after we had started with hospice, Mary broke her ankle.  First we were told she would be off for about a month to mend, then would be coming back.  However, the hospice company let her go.  When I found out she was gone and not coming back, I had a meltdown.  I cried and yelled and kicked and threw things (good thing husband was out of range!).  I was just devestated.  Once I was able to settle down, I realized the importance of relationship dynamics in a caregiving/hospice situation.  It took me awhile, and I had to be accomodating to fill-in nurses, all who were terrifice and did well by mom.  But they weren't Mary.  I told Mary I was going to write about her and she got weepy, but I can't even put into words just how much she meant to me personally in this situation, writing about it is the least I can do.

I came to terms that there would not be another Mary, and that is that.  All who come since really are here to tend to mom, I have lost that one person who also tended to me.


I have been in touch with Mary, need to call her again.  Her recovery was long, all summer and more, so I hope she is finally up and about.

This was a difficult learning experience, I don't care to go through it again!

Sunday, December 13, 2009

7 Stages of Dementia

The 7 Stages of Dementia Global Deterioration Scale The Global Deterioration Scale (GDS), developed by Dr. Barry Reisberg, provides caregivers an overview of the stages of cognitive function for those suffering from a primary degenerative dementia such as Alzheimer's disease.

It is broken down into 7 different stages. Stages 1-3 are the pre-dementia stages.

Stages 4-7 are the dementia stages.

Beginning in stage 5, an individual can no longer survive without assistance.

Within the GDS, each stage is numbered (1- 7), given a short title (i.e., Forgetfulness, Early Confusional, etc followed by a brief listing of the characteristics for that stage.

Caregivers can get a rough idea of where an individual is at in the disease process by observing that individual's behavioral characteristics and comparing them to the GDS. (From geriatric- resources) _____________________________

The Global Deterioration Scale for Assessment of Primary Degenerative Dementia Level 1 � NO COGNATIVE DECLINE: No subjective complaints of memory deficit.

No memory deficit evident on clinical interview.

Level 2 � VERY MILD COGNATIVE DECLINE (Age Associated Memory Impairment): Subjective complaints of memory deficit, most frequently in following areas:

(a) forgetting where one has placed familiar objects;

(b) forgetting names one formerly knew well.

No objective evidence of memory deficit on clinical interview.

No objective deficits in employment or social situations.

Appropriate concern with respect to symptomatology.

Level 3 � MILD COGNATIVE DECLINE (Mild Cognitive Impairment): Earliest clear-cut deficits.

Manifestations in more than one of the following areas:

(a) patient may have gotten lost when traveling to an unfamiliar location;

(b) co-workers become aware of patient's relatively poor performance;

(c) word and name finding deficit becomes evident to intimates;

(d) patient may read a passage or a book and retain relatively little material;

(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;

(f) patient may have lost or misplaced an object of value;

(g) concentration deficit may be evident on clinical testing.

Objective evidence of memory deficit obtained only with an intensive interview.

Decreased performance in demanding employment and social settings.

Denial begins to become manifest in patient.

Mild to moderate anxiety accompanies symptoms.

Level 4 � MODERATE COGNITIVE DECLINE (Mild Dementia):

Clear-cut deficit on careful clinical interview.

Deficit manifest in following areas: (a) decreased knowledge of current and recent events;

(b) may exhibit some deficit in memory of ones personal history;

(c) concentration deficit elicited on serial subtractions;

(d) decreased ability to travel, handle finances, etc.

Frequently no deficit in following areas:

(a) orientation to time and place;

(b) recognition of familiar persons and faces;

(c) ability to travel to familiar locations.

Inability to perform complex tasks.

Denial is dominant defense mechanism.

Flattening of affect and withdrawal from challenging situations frequently occur.

Level 5 � MODERATELY SEVERE COGNITIVE DECLINE (Moderate Dementia): Patient can no longer survive without some assistance.

Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated.

Frequently some disorientation to time (date, day of week, season, etc.) or to place.

An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s.

Persons at this stage retain knowledge of many major facts regarding themselves and others.

They invariably know their own names and generally know their spouses' and children's names.

They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

Level 6 - SEVERE COGNITIVE DECLINE (Moderately Severe Dementia): May occasionally forget the name of the spouse upon whom they are entirely dependent for survival.

Will be largely unaware of all recent events and experiences in their lives.

Retain some knowledge of their past lives but this is very sketchy.

Generally unaware of their surroundings, the year, the season, etc.

May have difficulty counting from 10, both backward and, sometimes, forward.

Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will be able to travel to familiar locations.

Diurnal rhythm frequently disturbed.

Almost always recall their own name.

Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment.

Personality and emotional changes occur.

These are quite variable and include:

(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;

(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;

(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;

(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

Level 7 - VERY SEVERE COGNITIVE DECLINE (Severe Dementia): All verbal abilities are lost over the course of this stage.

Frequently there is no speech at all -only unintelligible utterances and rare emergence of seemingly forgotten words and phrases.

Incontinent of urine, requires assistance toileting and feeding. Basic psychomotor skills, e.g., ability to walk, are lost with the progression of this stage.

The brain appears to no longer be able to tell the body what to do.

Generalized rigidity and developmental neurologic reflexes are frequently present. __________________

The alzheimers association now has a plain English version of the seven stages, available at http://www.alz.org/AboutAD/Stages.asp

From Act mental health consultants-- A simplified version of 7 stages. Seems to describe the problems and care requirements seen in the nursing home. Very understandable.

Also gives range of time duration for each stage. http://www.actmentalhealth.com/News%202000,%2011-12.htm __________________

By the way, most doctors do not bother trying to determine the stage the person is in - except that they might indicate mild, moderate or severe.

The doctors are more interested in treating the individual patient and the problems he/she is having at the time of the visit.

They find no value in staging the dementia patient.

Caregivers tend to want the staging system to get an idea of where their LO is in the process and what lies ahead. -----------------------------------------

A simplified checklist version of the seven stages is the Functional Assessment Staging Test (FAST).

Note that stages 6 and 7 are broken down into smaller steps.

1 No difficulties, either subjectively or objectively

2 Complains of forgetting location of objects; subjective word finding difficulties only.

3 Decreased job functioning evident to coworkers; difficulty in traveling to new locations.

4 Decreased ability to perform complex tasks (e.g., planning dinner for guests; handling finances; marketing).

5 Requires assistance in choosing proper clothing for the season or occasion.

6a Difficulty putting clothing on properly without assistance.

6b Unable to bathe properly; may develop fear of bathing. Will usually require assistance adjusting bath water temperature.

6c Inability to handle mechanics of toileting (i.e., forgets to flush; doesn't wipe properly).

6d Urinary incontinence, occasional or more frequent. 6e Fecal incontinence, occasional or more frequent.

7a Ability to speak limited to about half a dozen words in an average day.

7b Intelligible vocabulary limited to a single word in an average day.

7c Nonambulatory (unable to walk without assistance).

7d Unable to sit up independently.

7e Unable to smile.

7f Unable to hold head up.

Comment on the FAST by dementia expert Geri Hall "You look for the stage which is the highest number where your person has symptoms because the losses are cumulative.

If a patient is in stage 3, I expect them to have some issues with money, working, driving, shopping, short-term memory, time sense, etc --

In stage 4 I see issues with driving, shopping, cooking, cleaning, doing chores, participating in higher level activities and social affairs.

But the person brings the deficits from stage 3 with them into stage 4. The deficits don't resolve.

And, there are those of us who work with these patients day to day who strongly disagree with several points on the FAST Scale.

The one major issue is bathing. Problems with bathing are the hallmark of the beginnings of stage 5.

G Hall recaps the seven stages --- Problems with driving, managing money, and shopping = stage 3.

If you notice she can't cook, clean, or do the laundry = stage 4.

If she requires help (or strong encouragement to bathe, clean her teeth, or select different clothing each day = stage 5.

If she has trouble with falling or bowel and bladder control and/or falling, she is in stage 6.

If she can no longer walk, stage 7.

The losses are cumulative and not every patient has exactly the same losses.

Care Recipient? No, That's My Mom!

I heard someone talking on the radio this weekend, I am not sure who it was, but I believe she was a caregiving professional. She referred to those we care for as a care recipient, which of course means a person who receives care. But the sound of that seemed to me to be very sterile, indifferent...even cold. We who are caregivers, are giving that care to our mom, our dad, our son or daughter, or some other family member, even a friend. They are not 'recipients' to us, they are people we love, and in many cases are losing. To give them a label such as 'care recipient' is to me, less then tender or caring concerning, not just our feelings, but certainly the feelings of those we care for should they be able to understand that label. I apologize if I offend anyone in this statement, but I had to share how I felt about it.

Ageism and the Elderly

Ageism and the Elderly
Donna Webb
Axia College – University of Phoenix
SOC/120 Introduction to Sociology
January 11, 2009


Ageism and the Elderly
Respect your elder is a statement made to just about every boy and girl growing up. Even our parents did not know at the time they made that statement to us, just how disrespected elders, possibly even themselves, would become in our society. In an age when everyone is protesting against discrimination, there exists and continues to grow perhaps one of the worst discriminations ever, ageism. Taking a look at how society views and treats the aged is perhaps a look into the future for those who discriminate.
“Ageism includes categorization, stereotyping, and prejudice, but the most crucial aspect is exclusionary behavior. Ageism is the systematic stereotyping of and discrimination against people because they are old, just as racism and sexism accomplish this with skin color and gender” (Calasanti,2009). “Ageism has been called the ultimate prejudice, the last discrimination, and the cruelest rejection. The very people who are supposed to be advocates for older people have been socialized to be unaware of ageist stereotypes or their role in them” (Angus, Reeve, 2006).
Ageism is a type of oppression, but it is different from others. It is a condition that everyone will have to experience at some point in their lives, depending on how long they live and how they maintain their health through the years. A sad statement of truth is that the majority of the population is taught bigotry from very early on in their life. This learned bigotry has shaped our culture into one that is ageist. Because of this bigotry we end up causing our own oppression. (Calasanti,)
Discrimination towards the elderly is shown in different places and expressed in different ways. For years nursing homes have been infamous places of mistreatment of the elderly. Lack of proper care given, withholding food or liquid is typical of mistreatment of the aged in nursing facilities. That is not to imply that all these facilities are like that or that all caregivers in nursing facilities treat the elderly patients improperly. Public disrespect is often shown towards the elderly, showing that perhaps the ‘respect your elder’ training had ceased to be some years back. Poor treatment of the elderly could cause them to retreat into their homes and perhaps not venture out again, rather then risk insults and disrespect.
An area that one might not expect to see the ageist attitude show up would be in the adult children who are caregivers for their ailing or aged parent. Many would be criticized for treating their parent like a child rather then an adult parent. Some are forced into the position of being a caregiver, and there can be resentments that develop. However, an unfortunate truth is a role reversal occurs; the parent very often does become the child both in how they must be cared for physically, and how responsive they become mentally. There are those who do show blatant disrespect for their parent, and even enter into abuse and neglect of the parent, but for most families, the ageist attitude is not an attitude but in fact a necessity. In some cultures, children send their elderly off to the mountains to die, or banish them to a lonely existence alone in a small room. Our culture pushes to put the elderly in a home, shut them away, turn the responsibility over to others, and then breathe a sigh of relief, out of sight, out of mind.
In the health care industry, there is a prejudice towards the elderly. Less time and care are given to them because they move to slow, don’t understand or can’t communicate their needs or concerns effectively. Dr.s can treat many younger patients in the time it takes them to treat an elderly one. “Doctors who are under intense financial pressure from managed care plans and companies and low Medicare reimbursements, try to pack the maximum number of appointments into a day” (Pope, 2003).
There are approximately 76 million people, the baby boomer generation that are entering their golden years. But this time it is different. This generation consists of boomers who are stronger in mind and body and as a result will live longer then generations before them. Even with these changes there are many of these boomers, who are bringing into their later years, sickness, and mental diseases. “The areas of health care and social service must be reevaluated to better take care of these seniors. Society must rethink its ideas about retirement, ageism, and quality of life” (Dychtwald, 1997). “As a result of dramatic advances in sanitation, public health, food science, pharmacology, surgery, medicine and, lately, wellness-oriented lifestyle management, most of us will age. We are witnessing the birth of a 21st century gerontocracy” (Dychtwald, 1997).
Going into the next century, society will be facing a number of crisis’s. (Dychtwald,1997).
1.“A Pandemic of Chronic Disease – As 76 million baby boomers are barreling toward maturity, an "age wave" emerges that will soon have the strength and power to create vibrant new social forms and functions and an equally compelling potential for social, financial, political and personal catastrophe” (Dychtwald, 2005).
2. “Mass Dementia - We have increased our effectiveness at keeping people alive for decades. We already have 3 million people over the age of 85, and this is the fastest-growing segment of the population. However, we have not done that good a job of seeing to it that these long-lived men and women are functioning with full physical and mental faculties. Today, the dementia rate for the 85+ population is a staggering 47 percent” (Dychtwald, 2005). “Unless much-needed scientific breakthroughs occur, Alzheimer's will be the scourge of the future” (Dychtwald, 2005).
3. “The Caregiving Crunch - The average American now has more parents than children including in-laws and even grandparents, and 10 percent of the elderly population in our country have children who are also elders over 65. As a result, more and more of us will have to provide time, money, respite, housing, transportation, love and nourishment to our parents and our children—and possibly grandchildren and grandparents—simultaneously, for decades” (Dychtwald, 2005).
4. “Coping with Death and Dying - The contemporary approach to old age and dying emphasizes keeping people alive as long as possible, regardless of their quality of life and regardless of their wishes. Whereas in the past nearly all deaths in America occurred at home, today about 80 percent take place in institutions. Yet, except for a smattering of wonderful hospice programs, we do not have institutions that are sufficiently comforting, nurturing or supportive of the dying and their families” (Dychtwald, 2005).
5."Gerassic Park - All future-oriented public policy in America, including policy regarding Social Security and Medicare, is based on the assumption that there will be no meaningful breakthroughs that will affect longevity or biological aging. As biotechnological breakthroughs occur that could radically alter late-life disease and even human aging as we now know it, battles could erupt over who will decide how these mind-boggling technologies will be controlled and who will have access to them” (Dychtwald, 2005).
6. “An Inhospitable Marketplace - Within the U.S. marketplace there still persists an overwhelming obsession with youth. From the perspective of a 60-, 70- or 80-year-old, the world is a long way from being aging-friendly” (Dychtwald, 2005). “If we want a world that fits our needs as we grow older, we must encourage the development of new aging-friendly products in all sectors and match that with much better transgenerational marketing” (Dychtwald, 2005).
7. “Changing Markers of Old Age - Our current markers of aging have no place in the new millennium. Increasing longevity will not only postpone the arrival of old age, but will also cause all of the stages of life to stretch and shift significantly:” (Dychtwald, 2005).
8. “Financial Insecurity - Many boomers have accumulated dangerously high levels of debt and minimal savings and will not be the beneficiaries of a demographically driven home equity boost. Pensions are becoming less reliable as guaranteed benefits are swiftly being replaced by defined-contribution pension plans. The futures of Medicare and Social Security are, at best, shaky. If we do not take action now, we could face a future with massive elder poverty” (Dychtwald, 2005).
9. “Age Wars - There are profound differences among the old and the young in terms of values, interests, needs and attitudes toward government. Sixty-five-year-olds are reasonably well organized, have a great deal of free time, and have the largest affinity organization in the history of America [the AARP, formerly known as the American Association of Retired Persons], outside of religion, to battle their battles, while 25-year-olds have no political voice and are scrambling to make ends meet.” (Dychtwald, 2005).
10. “Elder Wasteland - We desperately need a heroic model of old age for our coming maturity. If elders want to have the support of younger generations, those generations have also got to feel that elders are giving something back” (Dychtwald, 2005). “If we had 70-year-olds helping to educate and nourish our children, not only might they be helping them improve their arithmetic skills, but they would also be imparting a powerful base of values that we are about to lose” (Dychtwald, 2005).
If the younger generation could embrace the wisdom and knowledge of the older generation, they could begin to see value in the elderly. They could take advantage of all the elderly have to offer them and improve their futures with it. If they could recognize the contributions made, it would help to change their attitude to one of that is more positive and accepting. Acceptance and understanding are two things that well help stop discrimination at any level but certainly stop it towards the aged. (Wexler, 2006)
“Elderly people are often and in various ways targets of prejudice. They are victims of discrimination in hiring and through forced retirement they are negatively portrayed in the media and they are targets of stereotypes about competence and mental acuity” (Martens, Greenberg, Schimel, Landau, 2004).
The elderly population is increasing due to advancements in medicine. Consequently, ageism is a problem that is affecting more and more people. Also because of advancements in medicine, more and more people are dying during old age rather than prematurely, suggesting that aging and elderly people will increasingly become a threat to people’s ability to manage death-related fear. As aging becomes an increasingly likely way we will die, aging, along with reminders of aging such as elderly adults, should become only more threatening. The more prejudice is directed at elderly people, the more people will have to fear about them. (Martens, Greenberg, Schimel, Landau, 2004).
This is a society of isms, racism, sexism, and ageism. It labels, stereotypes, and categorizes people, by shape, size, color, and age. The elderly in their later years should be able to have a peaceable life, treated with dignity and respect. However, pretty much anyone under the age of 50 is a target for an attack of an attitude of ageism at some point. Those who do the disrespecting don’t stop to consider that at some point, they will also be at the receiving end of that attitude.

References
Angus, J., Reeve, P., (2006). Ageism: A threat to aging well in the 21st century. Journal of

Applied Gerontology 2006, 25, 137 Retrieved December 9, 2008 from web site

http://jag.sagepub.com/

Casalanti, T. (2005). Ageism, gravity, and gender: Experiences of aging bodies.

MasterFile Premier. Retrieved January 9, 2009 from web site

http://www.ebscohost.com/

Dychtwald, K., ( 2005). "Society Must Prepare for a Wave of Aging Baby Boomers." At

Issue: How Should Society Address the Needs of the Elderly?. Ed. Tamara

Thompson. San Diego: Greenhaven Press, 2005. Opposing Viewpoints Resource

Center. Gale. Apollo Library. Retrieved December 9, 2008 from website

http://find.galegroup.com/

Martens, A., Greenberg, J., Schimel. J., Landau, J., (2004). Ageism and death: Effects of

mortality salience and perceived similarity to elders on reactions to elderly

people. Personality and Social Psychology Bulletin 2004; 30; 1524 Retrieved

December 30, 2008 from web site http://psp.sagepub.com/

Pope, E., (2003). Second-Class Care. AARP Bulletin Today. Retrieved January 10, 2009

from web site http://www.aarp.org/

Wexler, B., (2006). "The Economics of Growing Old in America." Growing Old in

America. Information Plus® Reference Series. 2006 ed. Detroit: Thomson Gale,

2006. Opposing Viewpoints Resource Center. Gale. Apollo Library. Retrieved

December 31, 2008 from web site http://find.galegroup.com/

Caring for the Elderly

Caring for the Elderly - Who is Responsible?
Do Cultural Differences Affect the Decision?
Donna Webb
Axia College of University of Phoenix

Mom was passing by my husband while he was sitting at his computer; she stopped, and blew on his neck. “Mother, What are you doing?!” we asked her in disbelief. She said to him, “I’m just blowing on your neck.” “Have to do something funny once in awhile!” And off she went to her room. Of course we were cracking up to say the least!

This was a one of a kind moment. A moment that could only happen because mom was in her home, cared for by family and not in a nursing home. Does our culture dictate whether a parent will be cared for by their son or daughter, or placed into a nursing facility? In our country, there is an increasing need for caregivers for the elderly. The choices available are for them to stay in their home, and have a fulltime caregiver, or a son or daughter care for them, or to be placed in a nursing facility. Which is best for the parent? Which is best for the family? How do other cultures see their responsibilities to their elderly?

So, what happens in the United States when we get old? We are taught to love, honor and respect our mothers and fathers. Do we pack them up and tuck them away into a nursing facility, away from their home, family and friends? Because the truth is, once an elderly person is put into a facility, he or she are basically left alone and forgotten. Oh, no! We say that would never happen. But yes it does, and all too frequently. There are many elderly which experience relocation trauma, which happens when they are moved to unfamiliar locations. Moving an elderly person may become necessary because his or her health is declining and they require more supervision. That move can be either to a care facility or to the home of a family member. Men seem to respond even more poorly then the women. Relocation is very stressful. The people feel they have lost control over their lives and they do not know what to expect in the new location. If they have any type of memory loss then moving from what is familiar to them can add to the confusion and cause them to be more dependent on others and lead to frustration. (The Merck Manual of Health & Aging, 2007).

What are the choices for the elderly? Well, for one thing their choices depend on how wealthy they are. Carey (1983) states that” “about 6 percent of older people are affluent enough to live in luxurious, sunny retirement communities.” A third find it hard to meet their basic living expenses. So what are the choices as they age, and are unable to care for themselves? For some it will be assisted living homes then later on possibly a nursing facility. For others, they will stay in their homes or have to move in with a family member.

In other traditional cultures around the world, the elderly live with their children, an arrangement that is both of necessity as well as out of respect. “In many of these cultures, people have to work well into old age, and when they can no longer contribute, they are quietly pushed toward the grave.” (Carey, 1983).

The Japanese live in a culture that supports having reverence for the aged, so many of the elderly live with their children. But the elderly also live in the fear of obashiteyama, which literally means, “to abandon grandma on the mountain.” (Carey, 1983). The Confucianism teaching of filial piety, which teaches that children need to support and care for their elderly, helps to deter them from banishing grandma to the mountain! (Ritts, 2000) BBC News (2000) reports, “One in six Japanese (22 million) are elderly. By the year 2025 one in three will be elderly.”

“In Nigeria and other countries in Africa, the elderly must live with the eldest son or daughters because of low income. There are homes in Nigeria for the elderly who do not have families to care for them, but most try to return to where they were born when they are old. Nigeria, as with other developing countries, is faced with an increase in the number of elderly. Today, even though they are faced with a growing concern for the elderly, there has remained a positive attitude toward them.” (Ritts, 2000).

“In many American Indian families the grandmother is the center of the family. It is common for a woman to be a grandmother by the time she is 40. The life expectancy of American Indians is 45 years of age. Thirty-seven percent of the American Indian population die before the age of 45. The grandmother may assist in the child rearing of the grandchildren. Reciprocity is important and many grandmothers state that if they are not cared for by their children, they should have done a “better job” raising their children. Consistent with values that emphasize interdependence and the importance of filial relationships, the family is important in the caring for the elderly.” (Ritts, 2000). “It is estimated that by the year 2050, the number of elderly Native Americans could exceed 500,000 persons, representing 12% of all Native Americans.” (Ethnic Dimensions of Aging, pp.18-34).

“In the United States of the 96.6 households, there are 22 million or 23% involved in caring for someone who is 50 or older.” (Metzgar, 2004)). “By 2030, 70 million Americans will be over the age of 65. This is one out of every five Americans. 7,000 Americans turn 65 years of age each year. By 2011, 10,000 people will be turning 65 each year. And 85% will at some point require some sort of in-home caregiving assistance.” (ShirleyBOARD, 2007).

“Aging adults overwhelmingly want to remain in their own homes as opposed to living in a nursing home or board and care center. According to the General Accounting Office report, of the almost six million adults age 65 and over with long-term care needs, only 20% receive care services in a nursing home or other institutional setting, with the remaining 80% receiving assistance at home and in the community. Home and community-based care, allows individuals to maintain their independence and age with dignity in the comfort of their own homes.
Our federal policies do not adequately recognize that the most cost-effective form of long-term care is provided through home and community-based services. Despite the substantial role that family caregivers play in providing long-term care, the U.S. lacks a coherent set of policies to assist informal caregivers.

By shifting national policies toward home and community-based services, the quality of life of older adults will improve, taxpayers will be spared the cost of premature and expensive institutional care, and our nation’s core values will be honored.”
(Tamara Thompson, 2005) According to Assuras (2000), “there is more public funding, particularly federal funding, for nursing home care than there is for care in the home.”

There are increasing numbers of families who simply cannot care for their aging parents and their only choice is to place them into a care facility. The family experiences much stress when faced with the realities of long-term care for their aging parents. How does it affect their household routine, their jobs or their children should they still have children at home? The biggest stress factor may indeed be how it affects their finances. Can they continue working or does one of them have to stop working to be the caregiver? Or do they have to hire full-time care, so they can keep their jobs? Adult children will often feel guilty about putting their mom or dad in a nursing home, after promising never to do that. But sometimes it just comes down to the reality that they can not care for their parent.

For many the only alternative in being able to maintain their normal lives is to place their parent in a nursing home, for most, a difficult decision. Adult children who decide to become their parent’s caregiver will often “find themselves on a roller-coaster ride, both emotionally and financially.” (Powell, 1998). “Statistics say that there are an estimated 120 million adult Americans either providing care to an adult family member or have provided care in the past. 56% of caregivers in this country are women over the age of 45 and they are taking care of an elderly parent.” (Strength for Caring)

The author is one of the 56%, “a kind of sacrificial lamb, the one who does it all, all the time.” (Stern, 2007). Not so much by choice, but because no one other then her husband helps. Her family wanted to put her mom in a nursing home, so she would not be a burden, a burden on whom? They take no responsibility, for her whatsoever. Much has been sacrificed to keep the commitment made to look after her mother but it is worth it. She is living longer; she is in her own home, even though sometimes she does not realize it. If no one else comes to see her, we are always here.

A study published in the Journal of Marriage and Family indicated a “strong commitment by Americans, particularly women born in the 1950s and ‘60s, to caring for their elderly parents. Baby boomers may turn out to be the most selfless and self-sacrificing generation American has ever known.” (Peck, 2007). But whose responsibility is it to care for the elderly, daughters, sons, or both?

“Mothers 65 to 75 are almost four times more likely to expect a daughter, rather than a son, to be their caregiver. They expected care from the child they felt closest to, and who had similar values. Studies indicated that the children the most likely to help are the ones who had received help from that parent in the past. The older mothers tended to name the child from whom they had received the most help – and that was usually a daughter. Mothers vastly expected that daughters would care for them, even if there were available sons. Daughters were probably named so often because mothers tend to feel closest to daughters, because of shared experiences also because of embarrassment if sons had to perform personal-care tasks.” (Medical News Today, 2006)

Are there any husbands or sons who fill the shoes of caregiver? Yes. “In the United States and Japan, social and demographic changes are placing pressure on men to become involved in eldercare. In Japan, 15 % of caregivers to the elderly are men compared with 28 % in the United States.

Culture is a factor in the social shaping of the caregiving experience through different societal expectations about the roles, coupled with different family structure, different caregiving ideals, different views on dependency, and different views on self-expression and on the need to maintain harmonious relationships.” (Harris, Long, Orpett, 1999).

What is the future of caregiving for the elderly? According to Ward (1999) “a Japanese-led research team said it had made a seeing; hearing and smelling robot that can carry human beings and is aimed at helping care for the country’s growing number of elderly. The five foot robot can already carry a doll weighing 26 pounds.” “The robot can detect odors, eight different kinds of smells, and can tell which direction a voice is coming from and uses powers of sight to follow a human face.” “A researcher at Japan’s University of Tsukuba has developed a robotic suit designed to make it easier for elderly people with weak muscles to move around.”
“One of the most labor-intensive nursing home tasks is bathing frail residents. For this job, Sanyo Electric has introduced what is essentially a robot bathtub. The tub closes around a patient who is seated in a wheelchair. The wash and rinse cycles operate automatically. A nurse’s aid takes care of the hair washing and toweling the resident off. Japan’s need for elder-care robots is partially driven by a falloff in its national birthrate, which has left the country with too few young to care for the old.” (Ward, 2006)

Well, robotics may be what is ahead for eldercare, and it certainly gives new meaning to the term ‘personal touch’ does it not? So, is there a right or wrong choice to be made concerning caregiving? Different cultures share many of the same ethics, and struggle with many of the same problems in deciding how to care for their elderly as the United States does. Ultimately, it comes down to what is best for the whole family. Hopefully, that will be what is best for the parent.




References


Assuras, T. (2000). The high cost of caregiving. CBS NEWS, Retrieved May 28,

from Web site: http://www.cbsnews.com/.

Barresi, American Indian/Native Alaskan Elderly. Minority2, pp.18-34, Retrieved

May 31, 2007, from http://socrates.berkeley.edu/

Carey, B. (1993, Oct.). Where in the world is it good to grow old? Health, Vol. 7,

Retrieved May 21, 2007, from EBSCOhost database.

Family caregiving in America: Facts at a glance. Retrieved May 28, 2007, from

Strength for Caring Web site: http://www.strengthforcaring.com/

Fears over Japan's aging population. (2000, Dec. 22). Retrieved May 17, 2007,

from BBC News Web site: http://news.bbc.co.uk/

Harris, Braudy, P., Long, Orpett, Susan (1999). Husbands and sons in the United

States and Japan: Cultural expectations and caregiving experiences.

Journal of Aging Studies, Vol. 13, Retrieved June 3, 2007, from

EBSCOhost database.

Lemnah, S. (2007, Apr, 23). Sixty plus: Caring for the caregiver. Burlington Free

Press, Retrieved Apr 23, 2007, from http://www.burlingtonfreepress.com/

Life-changing events. Changes in living arrangements. (2007).The Merck Manual

of Health & Aging, ch.61 section 4, Retrieved June 18, 2007, from

http://www.merck.com/

Older mothers overwhelmingly choose daughters as caregivers. Medical News

Today, Retrieved Jan 18, 2007, from http://www.medicalnewstoday.com/

Peck, R.L. (2007, Jan). Are baby boomers the greatest? Nursing homes: Long term

care, Vol.56, Retrieved June 3, 2007, from EBSCOhost database.

Ritts, PH.D., V. (2000). American Indians. Culture and Aging, Retrieved May 17,

2007, from http://users.stlcc.edu/

Ritts, PH.D., V. (2000). Japan. Culture and Aging, Retrieved May 17, 2007, from

http://users.stlcc.edu/

Ritts, PH.D., V. (2000). Nigeria. Culture and Aging, Retrieved May 17, 2007,

from http://users.stlcc.edu/

Roots, C.R. (1998, Jan). The sandwich generation: Adult children caring for aging

parents. Retrieved June 25, 2007, from Powell's Books Web site:

http://www.powells.com/

ShirleyBOARD. Retrieved June 25, 2007, from ShirleyBOARD:an online

community for people caring for aging loved ones Web site:

http://www.shirleyboard.com/

Stern, L. (2007, Apr, 21). Compensating family caregivers. Reuters, Retrieved

Apr 21, 2007, from http://today.reuters.com/

Strasser-Metzgar, Rhonda (2004, Feb 20). Caregivers, daughters and sons.

Retrieved Jan 18, 2007, from WNY Health Caregivers, Daughters and

Sons Web site: http://www.speakupwny.com/

Thompson, T. (2005). Public policies should help the elderly live at home.

How should society address the needs of the elderly. Opposing Viewpoints

Resource, Retrieved May 30, 2007, from Thomas Gale database.

Ward, J. L. (2006, Mar 17). Japanese build robots to care for elderly. Retrieved

Jan 10, 2007, from Garlo Ward, P.C. Attorneys At Law Web site:

http://garloward.com/

Wednesday, December 9, 2009

Welcome to all Bloggers from the Caregivers Holiday Blog Party!


Welcome to all Party bloggers! This is really an exciting time for me, to be able to share with all of you and more to come the writings I have done about caring for mom. Each of us has a common story to tell, yet with many different twists and turns, because we are individuals, and so our those we care for. I hope that you will find a treasure to take from these writings, as I find when I read your posts.





Merry Christmas and Happy New Year to all who visit here!


This is the main information center for the careteam I put together to take care of mom while I was gone for 5 days. There were also additional instructions posted in mom's room,as well as many sticky notes on drawers and cabinets to make finding items easier. All this, and still mom's care was not what it should have been, which I will be blogging about soon.

Friday, November 27, 2009

Caregiver of the Month!


11-27-09


Mom's hospice nurse came today to see mom, and she presented me with a certificate, nominating me as the caregiver of the month! How neat was that? So, it is hanging on the wall next to mom's bed, for all the caregivers who will be looking after her while I am gone next week, to see! Oh, I am going to TN on Dec. 3rd for one of my son's wedding! We will be gone 5 days, and it has been a big deal to arrange a care team for that time as well as do all the scheduling and menus, and instructions, but I am almost done! I will have to post a picture of the bulletin board once I am done!

Wednesday, November 25, 2009

Encouraging Words

11-25-09


Mom's Dr. called today to give me the results of her last blood work, and it was great!
I am always concerned that she is getting enough nutrition. What is enough for her? There is really no way to determine that. I don’t want to have her malnourished because I am not feeding her enough. It is not easy to get much food into her, and at her age and in her condition I have no guidelines as to what enough is! So, I rely on those blood tests to tell me how she is doing, and is she getting enough nourishment.


The Dr. said I am doing a great job. It is not about a pat on the back and it is not about striving to keep her alive till she is 100, but it is my responsibility to do the best job I can as long as I can, to give her the best quality of life I can.

Friday, November 6, 2009

Houdini or Gypsy Rose Lee?

11-1-09


Attempted escapes over the bed rails...


Removing all coverings to allow for easy escape...


Pinned down? No problem, pull till pin releases and arms are free...


Remove further restraint of nightgown, stripped down to the bare ...


Time for plan…..? Hmmm, don’t think I have a next plan.


We are using a new med to help settle her down, she gets anxious and moves around a lot, with in the confines of her bed and with the limitations of her body. It doesn’t appear to stop the middle of the night adventures she has though, since I gave her one last night around 9 and by 2am she had accomplished her tricks! She had been sound asleep when I went to bed too….


Husband came up with a better plan! He got me 4 small but very strong clamps with which I can secure the blankets down. If she can't pull off the covers, she can't get her upper body free to cause mischief! It works! I think is also has sort of a swaddling affect on her as well, like making a baby feel secure when they are swaddled, makes her feel more secure...'tucked in'.

Not Amusing.....

10-2-09


Trying to think of something amusing in addressing this subject matter….hhmmm, nope it’s not coming yet. The subject is what to do and say to mom when she says “I have to go potty”, or “I have to use the bathroom”.


Now this doesn’t occur often where she makes these statements, acknowledging her awareness of the need to go, but when it does, it is almost hearts breaking….I have tried to answer in various ways, none which I am happy with and I don’t know how in her mind she receives the information! I have said, ok, I have to get you up first.


This is usually when I am getting her up either in the a.m. or in the afternoon. By the time I am done, the need has already been “eliminated”. She hasn’t used the bathroom for a long time now, and no longer can be placed on the potty. She is total diaper and has been for months. I told her one time there was another way to take care of her potty needs; she asked me what it was!


I showed her the special pants, and said they take care of it, and then I do the rest! How do you tell your mother it is ok to go to the bathroom in her pants! I just can’t wrap my mind around that yet I have basically said that! What else can I do? It is sad, she has some idea of her bodily functions but no control as to how, when or where she goes. Sad.






11-27-09


What I do now when she says she has to go is, basically I tell her I have to get her ready to get up first....then I will take her....by the time I am ready to get her up she will have already done what she has to do, and I will do what I need to...

The Whining

8-19-09

A new stage in mom’s behavior….whining, when you touch her, move her, or she wants something, or she is in some kind of discomfort. It is hard to figure out and guaranteed to annoy at times!


I asked her, yesterday, are you hurting…no….are you in pain when I move you….no….then why are you making those noises??? Not expecting a reply from her, she says, “I don’t want to be messed with.” ……… ok, that was one of those excuse me what did you say moments, except I doubt that she would be able to repeat it if I asked her to!


It was the chuckle of the day and helps to make light of the annoyance that the whining was causing, at least yesterday!

1-3-10
OMG!  Whine! whine! whine!  Sometimes it is absoultely maddening.  She is sitting in the front room in front of the tv and is non-stop whining!  She probably wants to go to bed, but this is the only time of day she is up for a little while.  Somedays she is quiet, and others she is like she is today, non-stop whining!  Feel like blasting some music or something!  But I won't.....

Aloneness

8-16-09


So much aloneness being felt on this afternoon. I had watched a movie earlier to take up some time. My husband had been gone working on a truck, mom was still in bed, I would be getting her up shortly. Youngest grandson went home at 11, today is his 3rd birthday. There is no going to church today for either of us, no transportation. Sundays have little to no traffic around here, needs to be Monday, busier and noisier. But too many hours left till then....one of those unbearable days.....

What a Difference a Year Makes

7-10-09


Last year mom was walking with a walker, needed some help on and off a chair or couch, was able to feed herself and drink from a cup or with a straw. She could dress and undress herself with minimal assistance, and toilet herself, with minimal assistance. This year, she is total care. The decline came in stages but were quick and sometimes chunks of her independence were just eliminated at one time, it just shook the household some days!


When mom went on hospice care this spring, was after a chunk of these things were going on, and to top it off she was getting bedsores! It just through me in the pit! I was just overwhelmed and overtaken by it all....called her Dr. and said I don't know if she will even be here when you come for her next visit! He set up the hospice for her, which eased things a bit, gives you the security of knowing there is 24/7 help whenever you need it.


I was able to get the sores healed up quickly, and with her air mattress and electric bed, there have been no more sores!


There have been changes since this spring, changes since summer, as I write this it is now Nov., day before Thanksgiving. Even though mom has quite a bit of comprehension, when she is not under the influence of her meds, holidays mean nothing to her. Nothing means anything to her really, other then being comfortable and sleeping when she needs to.


I know there will be more changes to come, accepting that is what is always difficult for me, but I am working on it.


12-15-09


Update - and again, more changes, eating decreased somtimes food is refused, dealing with keeping pressure sores from developing on her heels. Her over all personna has changed. She can't stay up as long as she used to and sometimes I can only get her up once a day. Time is ticking.......

Nourishment

Nourishment is nourishment, no matter what form it is in, pureed and blended, puddings and creams.


Gone are the cups, gone are the straws.


Taste does not matter as she cannot taste, it is just a matter of nourishment, proteins and vitamins, purees and blends. (7-8-09)

4th of July and Mom's Tuna Macaroni Salad - Repost






Fourth of July memories, the assembling together of the Jackson and Picknell clan at Uncle Jack and Aunt Peg’s farm, which later became the campgrounds. Tables and set up outside, filled with every kind of picnic food you can name. Grills going for the burgers and dogs…don’t think we did brats in those days. Geez that sounds like it was eons ago…but in a way it is.

Games would be played, bat mitten, croquet and so on. The usual bunch of cousins would go explore the wonders of the woods, crossing the creek by shimmying over a fallen log, or trekking through the hollow and jumping onto the tiny island nestled in the creek bed there.

The nieces and nephews all babies and toddlers then, now adults with children of their own. The cousins, many of us close in age, now with adult children AND grandkids! An unfortunate thing that the tradition of these 4th of July family gatherings, could not have passed on to each generation to come. But as time has it, age takes over, property is sold, families spread out and go different directions in life, seldom seeing each other again.

One of the things I always looked forward to every 4th of July, besides going to the parade, the activities at the picnic, and fireworks in the evening, was my mom’s tuna macaroni salad! A favorite of mine to this day. I have made it for years, sometimes varying the ingredients according to the tastes of those who would be eating it. But the one and true original, mom’s recipe, has been and always will be the favorite, the one I measure all tuna macaroni salads against…and none compare to her’s! (7-05-09)

7-2-10  I saw this pic when I was looking for some 4th photos to use, and I remembered the Doll Buggy Parades, held on or around the 4th.  I was in some of them riding my pimped out trike lol.  Never one the prize, but it was  a fun thing, distant memories. I don't think they hold them here in town anymore, would be a shame if they didn't.  Kids feel important, special, in their own little parade.




Hospice Begins

It signals the beginning of the end, the final journey, the last days….or perhaps weeks or months. However it is perceived, when hospice comes in, time is limited. This part of it is better not contemplated for long periods, but rather look at the blessing it is to have aids and nurses come and give assistance, as well as real people to talk to several times a week!


Anything I need for mom’s care is provided, her electric bed is awesome. The only extra expense we have for her now, is to buy her nutritional drinks, which is still considerable. Thank you to all hospice workers, what you contribute, the burden you lighten on caregivers, is unmeasurable. 4-20-09

Happy 95th Birthday!



5-7-09 Happy 95th Birthday Mom!
Still May, still trying to decide whether to take any more pics of her. Last ones I took were on Christmas. So many more changes have taken place just since then, I don’t think I want to record those images, but, maybe yet, still time.




It's All in a Look and a Touch

Forgiveness, Love, Compassion 3-26-09
A difficult day, frustrating, trying to get mom to do some of the things she had always done....not wanting to see the 'signs' that she was taking another turn, going through more changes....not accepting what was so evident right in front of me. Like a light bulb moment, only this time it was the bulb shattering and cutting into my soul. I layed her on her bed as the moment was sinking in. I looked at her, she seemed to be in some distress, I asked her if she was ok, was she hurting.....she couldn't articulate at that moment...but she looked at me, deep into my eyes, reached up and patted my face....never did that before....in that look with that touch of her mother hand....she said, "It is ok, I know how hard this is for you....I forgive you for the mistakes, and I love you....." I was shattered, and glued together in that brief moment. Nothing more to say....

The Eyes Have It

To stop and look deep into her eyes must be done with the knowing that I may not find her there, or she look back at a stranger.


But even in those times of the not knowing, when I ask her, Mom do you know who I am, do you know my name, there may be silence only as she searches my eyes for the answer.


Yet I see in her eyes, deep within, the answer trying so hard to surface…


"Yes! I know who you are!” You are my daughter, Donna, my baby!”


Sometimes I give her the answers, and her eyes will light up with the knowing that yes, that is right!


Then I go on to the less painful tasks at hand. (7-08-09)

Acceptance of Change

Accepting what I cannot change, changing the things I can, and accepting the changes quicker, things would go a bit easier if I would do that, both for mom and for me!


As the dementia progressed and caused physical changes as well as the mental, I kept holding on to the way it was rather than accepting the how it is now. So, frustration would take over all to often, until I finally got to that point of ‘it is what it is’.


Once I accept that she can't do what she used to, and make the necessary adjustments in her care, things go smoother, for everyone.


As I said to my husband, acceptance of change means reaching into another pocket of my ‘caregiver coat’ pulling out it's contents and seeing what is next.

The Tower of 'Babble'

Where has she gone
Is it far is it near
What has she heard
Voices loud, Voices clear
Makeup and ice
Water and cake
That girl over there
Oh that’s a mistake!
Words after words
Some struggle, some true
A lifetime of memories
Now are her enemies
Unassembled, Disarrayed
Not forming properly
Makes her dismayed
Who am I?
Even in the fog she knows
This can not break
The love that she shows.
(November, 2008)

You Put The Lime in The Coconut...

You put the lime in the coconut and drink it all up…..in this case it was grab a bottle of lime juice from the fridge and sniff it all up!


The stink in the house had become so unbearable to me.


Three days of serious diarrhea, a tub full of towels and clothing soaking in detergent and hot water, an assortment of cleaners and deodorizers in a desperate attempt to cover-up or eliminate the smells, all futile.


So, lime juice it was, aaahhhhh, did that smell great.


So, for a time I was in the tropics smelling the wonderful fragrance of the lime trees!

Statistics and Family Situations

I found out a few years ago, that I am a statistic, a daughter who carries the responsibility of taking care of the elderly parent. I am one of the 76 percent of family caregivers who are women, and receive no help from their male family members. In my case that would be referring to my brothers as my sisters are both gone. My husband helps me with mom. Without his help, mom would never have been able to stay here in her home, because I couldn’t do it alone.


As for my family, even if my sisters were both alive, I don’t know how much help they would have been, what kind of commitment and sacrifice they would have been willing to make. My oldest brother lives across the county, so he can’t help physically, but some financial assistance would be helpful. He doesn’t call or write mom either. The last time he visited her, he shook her hand…shook her hand! I couldn’t believe my eyes. But that shows there are issues he has not resolved concerning his relationship with mom, and it looks like he won’t be either. I have another brother who lives minutes away. He has not really helped out until recently, his wife has not helped at all. We have had communication this year which has opened up things more for us and I can call on him on occasion to sit for a couple hours if mom is in bed.


I don't believe he can really deal with how she has changed these past years, and I understand that, most sons can’t. Not that it has been easy for me either, but I do what I have to do and I deal with it. His help would be appreciated in doing some things on mom’s house, he has enough skills to help my husband, but he is very tied up with his family.


Not having help from my brother’s had been very frustrating and caused me to have to deal with a lot of anger for several years. I have done quite a bit of reading on the subject, trying to make sense of how sons or daughters can not help with their elderly parent or parents, and not even visit them. I did make peace with myself over the matter, and accepted who they are and why, and I was only hurting myself by being angry with them, and I didn't need that negativity going on inside me with everything else I dealt with.


I have had the privilege of being the one to take care of mom and show her honor in doing so during her last years. Boy that sounds like I did it all perfectly and enjoyed every minute doesn’t it? Not hardly. The story goes back to when I was a child, much younger then all the rest, the baby of the family. There were drama and power struggles going on which I didn’t find out till years later. This parent favored this child that parent favored that one or maybe they were told they would amount to nothing. Parent and child issues, that as adults should be able to be dealt with and put in the past where it belongs. As for me, being the youngest, it was all my fault, so for years I was the target of their resentments. Mom and dad always liked you best kind of thing! Did I ask to be a part of their drama, no. Sometimes I feel like they have abandoned me to this task to get even, isn’t that a grown-up thought?


Not many men can take on the task of caregiver for their parent. It is emotionally taxing to say the least. Then if there are past issues with the parent that makes it pretty impossible for them to deal be caring towards the elderly parent. Because my brother used to see mom so seldom, it was hard for him to deal with the changes he saw in her physically and mentally. I of course see the changes too, but because I deal with them on a daily basis, they aren’t as disturbing to me. The best thing for me has been to just stop having expectations of my brothers to help with mom, to be or do something they can’t, to take on any amount of responsibility concerning her care. It just makes it harder on me to continue have the hope that they will help out, and that interferes with my doing my best to take care of mom.


Most of my days are spent in the house. I don’t even get out to the laundromat anymore; my husband has taken on that task, as well as getting most of the groceries. I go occasionally to do the major shopping. So, I get out even less now then I use to. Church is something we alternate, one week me then next week him. There is nothing we can do together unless we hire a mommy sitter. On a limited income, we have to be selective at what we do since we have to pay extra for a sitter. That means no movies, no eating out and not taking a drive after church (which we seldom can go to as a couple), shopping and so on. When we first started hiring a sitter for mom, she was a bit uncertain and a little defiant, stating she didn’t need a sitter! But the sitter became a welcomed visitor for her, a companion, someone to make her smile and laugh. Not that we weren’t those things, but we were here 24/7, we were the rule makers, keepers of her house, the wardens! So friendly, smiling, different faces were a welcome change for her.

Mother! What Are You Doing?

I thought I had seen everything! One afternoon, as mom was heading to her room for a nap, she walked past my husband, who was sitting at his computer, stopped, bent down and blew at the back of his neck! He said to her, "Mother, what are you doing?!" She said, "I'm just blowing on your neck." "Have to have fun sometime! Too funny!

Who Am I? What's in a Name?

As mom has aged these past years and her memories have traveled back and forth through the decades, I have always said as long as she knows my name, knows who I am, it’s all ok. Then one summer afternoon, she couldn’t find the word. She knew that she knew the answer, but she just couldn’t locate it in her archives! Then I asked her, what’s my name? She named my oldest sister Joyce, who passed away in 1969. I said no, then she named my sister Lois, who had also passed away. Again I said no. She said I just can’t remember! I said that’s ok mom. I’m your daughter and my name is Donna. "Donna"! She said, as if to firmly plant it in the memory banks so as not to forget again!


Another day, my husband asked her who I was and she said with a smile, “That’s my baby!” What’s her name he asked? “Donna Mae!” she said very emphatically! She never uses my middle name, so that was kind of funny for us. Shoot, I’m happy for her just to remember my first name!


When I left her room the afternoon she couldn’t remember my name, it was one of those moments. A moment that only a parent caregiver can understand. The one who named you, cared for you as a child, helped you as a young adult, and now dependent on you for her care, has forgotten who you are. It was a moment, probably due to the fact she was tired, combined with her new meds, and it passed. But the effect it had on me was a bit longer lasting. It’s all still ok, but I know that each day that comes, could be one of those moments, that she knows that she knows me, but who are you?


So, what’s in a name? A lifetime.

When Mom Stops By

The days that mom stops by for a visit, she is treated like a guest. Served a breakfast of eggs, toast a banana and juice. Entertained by a variety of TV. Shows and maybe a good movie she watches more then she listens. Visuals are more important these days. At lunch time she has a light meal, never a big lunch. She often stays for supper, I prepare a special dinner just for her. A piece of cake or some ice cream rounds it all out. You sure get treated good here, she will sometime say.


At some point she will say, “Well, it’s about time I be getting back.” Back where, I will ask her. The answer will vary, well to the old house next door, (that’s where I lived and mom lived for many years, and the house burned in 2005. Or, it’s the other place, but she doesn’t know where it is. Or, the family will be coming to get me, or who will bring me home?


Obviously, mom did not come to visit. It is one of the days we dealt with in the life of mom. I have to remind her, mom, this is your home and you have lived here almost 20 years. The house next door, had a fire and we had to move in here with you and now we take care of you. She will shake her head, look down a bit, knowing she isn’t remembering some important things, and not understanding why. But sometimes she will say, “I’m just getting old and I forget some things.” I’ll say to her, who told you you were getting old? They are lying! We’d chuckle and off she’d go to get ready for bed. It was a nice days visit with the family.

She's a Wanderer, She's a Wanderer, She Roams Around, Around, Around

I can’t say how many times I would get up during the night or early morning hours, look over at mom’s house and see lights on, not just in her bedroom, but in the front room too. One time, my husband happened to be getting back late in the evening and saw her kitchen light on. He went to check on her and she was getting ready to eat breakfast ….at midnight.


Day and night, night and day, it all blended together for her most of the time. With no one living with her to schedule her days and nights, she did her own thing. When she woke up, if she decided it was time to get up, even if it was still dark out, she would get up, get dressed and go and have breakfast, or go sit in the front room for and read or watch TV for awhile.


Living next door, we checked on her in the morning and during the day as we could and then again in the evening. We did things for her that she could no longer do. But keeping her in bed at night, that we couldn’t do because we weren’t physically living in her house….yet. She also spent a lot of napping during the day, basically because no one was here and she would get lonely or bored, so of course that didn’t help her to sleep during the night either.


When we had the fire, the only thing we could do was to move in here with mom, or we would have been homeless. A new chapter in our lives, from a book I never thought I’d be writing. That was my grandma’s house. It was over 100 years old. Grandma raised her family in it, dad and mom raised the five of us in it, I raised my four sons in it, and all but one of my seven grandchildren had spent time in it. So, that which contained my lifetime of memories was now a blackened shell.


But we were well, and now faced with the job of making this little house of one, a house of three.
We had to sleep on the hide-a-bed in the front room, and many times during the night we would be awakened by the ‘wanderer’. She would wake up, go potty, and decide to get up and get dressed and come out of her room. She would turn on the kitchen light, or walk into the front room and sometimes turn on a light in there, where we were trying to sleep! She’d head for the bathroom, turn on another light! She wanted to get her teeth! Now all this would occur in any sequence and at any time of the night or early morning hours. Every night we were ‘chasing’ her back to bed at some point! Every night we would awaken to the dreaded metallic click! Click! Click! As her walker made it’s way across the kitchen floor, knowing that confrontation was soon to begin again. Sometimes, she would just walk into the kitchen, look at the clock, turn around and go back to her room and to bed, yay! However, that was few and far between. This was the nightly routine for about six months. Nightly sleep interruptions, yet those were the easy nights!
The weeks following when she broke her ankle, and had the black out episode were very taxing emotionally and physically. They had affected her mental and physical abilities greatly. She did recover well from the ankle break and walked with her walker again, but always had to have someone near by. Her mental acuity is what it is, and we deal with the fuzzy moments, repeating conversations or information as often as we have to.


She has been totally depended on us since that time, although she will state, I don’t need anyone to look after me! She still has a great sense of humor. She loves to watch The Chronicles of Narnia, Jumanji and she gets a good chuckle at the Three Stooges! She said to me one day, “We sure do have fun here don’t we?” and another time she told me I was more fun than a barrel of monkeys! That was almost 4 years ago, and the realities of care giving have long sense set in. But we will still try to keep humor going. You have to do that for everyone’s sake.