- Managing Caregiver Guilt by Vicki Rackner
- The Wounded Heart - Misjudgment
- Some Thoughts to Remember With Our Mothers in Mind by Abraham Smith
- Thoughts concerning losing a spouse to cognitive problems
- 5 Easy Steps to Finding the Best Adult Day Care Program by By Molly Shomer
- She’s Still My Mother By Jerry Ham
Ten Tips For Family Caregivers
for Adults wih Cognitive & Memory Problems (Part 1, 2 and 3)
Home Care Safety for the Caregiver
Managing Caregiver Guilt: 5 Tips To Manage Guilt So Guilt
Serves You, Not Imprisons You
Guilt is a common feeling in the landscape of care giving.
Guilt can propel you to be the best you can be ...or it can immobilize you.
For caregivers, painful feelings -- such as guilt, sadness and anger -- are like any other pain. It's your
body's way of saying, 'Pay attention.' Just as the pain of a burned finger pulls your hand from the stove, so,
too, guilt guides your actions and optimizes your health.
have a picture of the "Ideal You" with values you hold and how you relate to yourself and others. Guilt often arises
when there's a mismatch between your day-to-day choices and the choices the "Ideal You" would have made. The
"Ideal You" may be a parent who attends all of the kids' soccer games. Miss a game to take your dad to the doctor,
and you think you're falling short.
You may have needs
out of line with this "Ideal You." You may believe that your own needs are insignificant, compared to the needs
of your sick loved one. You then feel guilty when you even recognize your needs, much less
act upon them. A mother may ask herself, "How can I go out for a walk with my kids when my mother is at home in pain?"
(A hint for this mother: she can give more to her mother with an open heart when she takes good care of herself.)
You may have feelings misaligned with the "Ideal You." Feeling angry
about the injustice of your loved one's illness? You might even feel angry at your loved one for getting sick! Recognizing
those feelings can produce a healthy dose of guilt. Yes, you may even feel guilty about feeling guilty.
"Why did my loved one get sick?" you may ask. Perhaps, if the "Ideal
You" acted more often, your loved one would be healthy. What if you served more healthful
meals? What if you called 911, instead of believing your husband when he said his chest pain was just "a little heartburn"?
If you're the kind of person prone to guilt, learn to
manage guilt so that guilt serves you rather than imprisons you. Here are 5 tips for managing your caregiver guilt:
Recognize the feeling of guilt: Unrecognized guilt eats
at your soul. Name it; look at the monster under the bed
Identify other feelings: Often, there are feelings under the feeling of guilt. Name those, too.
For example, say to yourself: "I hate to admit this to myself, but I'm resentful that dad's illness changed all
of our lives." Once you put it into words, you will have a new perspective. You will also be reminding yourself of how
fortunate you are to have what it takes to take care of loved one."
Be compassionate with yourself: Cloudy moods, like cloudy days, come and go. There's no one
way a caregiver should feel. When you give yourself permission to have any feeling, and recognized that your feelings don't
control your actions, your guilt will subside.
for the cause of the guilt: What is the mismatch between this "Ideal You" and the real you? Do you have
an unmet need? Do you need to change your actions so that they align with your values?
Take action: Meet your needs. Needs are not bad or good; they just are. If you need some time alone,
find someone to be with your loved one.
your behavior to fit your values: For example, Clara felt guilty because her friend was in the hospital and she didn't
send a card. Her guilt propelled her to buy some beautiful blank cards to make it easier for her to drop a note the next time.
Ask for help: Call a friend and say, "I'm going
through a hard time. Do you have a few minutes just to listen?" Have a family meeting and say, "Our lives have been
a lot different since grandma got sick. I'm spending more time with her. Let's figure out together how we'll get
Revisit and reinvent
the "Ideal You": You made the best choices based on your resources and knowledge at the time. As you look
to the future, you can create a refined vision of the "Ideal You." What legacy do you want to leave? What values
do you hold dear? Then, when you wake up in the morning and put on your clothes, imagine dressing the "Ideal You."
Let this reinvented "Ideal You" make those moment-to-moment choices that create your legacy.
Understand that you will be a more effective caregiver when you care for the caregiver
first. Loved ones neither want nor expect selfless servants. As a caregiver, when you care for yourself, you increase and
improve your own caring. Yes, guilt is part of caregiving, but this
guilt can help you become the caregiver you and your loved one want you to be.
THE WOUNDED HEART - MISJUDGEMENT
Thoughts from the internet on being misjudged as a main caregiver,
as well as some of my own thoughts. -Pat
experience with Grandpa has really changed my entire perspective on the role of a caregiver. I had to experience how overwhelming
it is to try to meet the needs of an older adult who needs more care. I had to live through the times when I just wanted to
curl up in a fetal position and pray to God that someone would magically take over and help Grandpa. I have to say that being
a caregiver has humbled me and made me realize that I may have misjudged other caregivers I have met through my work in the
geriatric field, thinking, why don’t they do this or that. I really had no idea what they were going through when I
gave advice to these family members trying to find out how they could get help for their loved ones. -Sue Salach author of
Just When You Knew What You Were Talking About, Along Comes Grandpa!
Do not judge according to appearance, but judge righteous
judgement. This commandment is useful in the area of caregiving; it's so easy to judge someone's else's
caregiving on outward appearance, but the outward appearance may not be the reality of the situation. Here are some things
to keep in mind in order to be more encouraging to caregivers and less judgmental.
- Caregiver's who are stressed and fatigued are often told they need to get help, without having any offers
- Caregivers may ask straight out for help (or hint about it) and
still receive no help whatsoever. Later, when the main caregiver needs to make a difficult decision about placing their loved
one in an assisted care or nursing home, they are criticized for not asking for help and making decisions on their own without
- Caregivers bear a great deal of grief and guilt for having
to place their loved one in an assisted living facility or nursing home, even if they don't show it outwardly.
- Caregivers sometimes are accused of taking financial advantage of the ill loved one (usually a
parent) when that isn't the case at all; the parent may give the caregiver a gift of appreciation. Others lack the knowledge
of the financial impact of caregiving: job time is lost, not to mention daily expenses and extra food and cleaning help that
may be needed; also there are trips to doctors, pharmacies etc.
siblings may get upset with the caregiver for placing their parent in assisted living or in a nursing home even if the caregiver
can no longer physically care for their parent because they don't want their inheritance wasted on nursing care. At the
same time, they are unwilling or unable to care for their parent but that fact is overlooked in their criticism of their caregiver
- Caregivers may be judged as being cruel when others witness
a moment of impatience. Not that impatience should ever be excused, but caregivers are expected to
act perfectly at all times, even if the one being cared for doesn't. Caregivers sometimes
make mistakes and sometimes get impatient just like everyone does, however, this is grounds for quick discipline from other
family members and friends.
- Caregivers may put up with on-going emotional mistreatment
by the one they are caring for but they can't share this stress because they either don't want others to think badly
of their loved one or others won't believe the caregiver and think they are just being picky and complainy.
- Caregivers are told of "better ways" of doing things when the one who is telling these things
has not had the experience of ongoing caregiving and most of what they say is ignorant. If the caregiver balks at the idea,
they are judged as stubborn and they lack concern for their loved one.
families that live away from the situation like peace and quiet; they like knowing their loved one is being cared for by the
main caregiver without any problems. If their peaceful world is disturbed they immediately judge the caregiver has made a
wrong decision and the criticism begins.
- Caregivers are quick to be criticized
when problems arise or financial issues come about, but are rarely thanked for their time and effort.
- The strain of caregiving on the emotions and the physical body often go unrecognized by others
either by ignorance or apathy.
What should the caregiver
do about being misjudged?
- Examine self and make sure it is a misjudgment.
If you find yourself guilty, apologize and change.
- If not guilty,
keep doing what you know to be best for the situation, asking God for wisdom and strength.
- If you want to explain your action to your accusers, go ahead; if not, don't bother. I have found
a few people may want explanations, but many don't, so I say respond according to who you are dealing with and whether
or not that will add additional stress to your life. Some of you readers may think this is taking an easy way out and a Christian
should always prove themselves, but you need to keep in mind the Bible also tells us how to deal with stubborn and unreasonable
people. Sometimes bearing misjudgment in silence is the way to go.
and understand the ones you are to please is God, the one you are caring for, and yourself - in the sense if you can no longer
care due to physical reasons, then don't beat yourself up. Yes, it's a sad situation for your loved one. You can be
sad, but try not to feel guilty.
Some more comments from internet
caregiver support group:
I cared for my father for 7 years, then my sweet husband
developed alzheimers-he is also 80 as is your husband. People are always suggesting getting someone in to give you a break,
but I have had no luck with that-all think their own lives are too important so I am sure they are right.
I would like to ask if anyone has experienced a family split as a result of increasing needs of an elderly parent? I have
two brothers, one who recognises my role as mother's main caregiver and acknowledges that without my input, mother would
have had to go into residential accommodation years ago. The other brother is the eldest and his attitude is "She (me)
is a Registered Nurse, the only daughter, and recently retired. She is the ideal person to care for mother". He does
very little if anything at all to help mother on a daily basis whilst my younger brother at least visits regularly. Both brothers
are still working.
Recently, my elder brother has begun to criticise my care for mother, not to my face but to
other family members, and, even worse, has put me under suspicion concerning the handling of mother's finances. I am both
horrified and deeply hurt. If mother understood all of this, she too would be so sad. I continue to care for mother in the
way that I have, including keeping her accounts as well as I can. Yes, mother has given me the occasional lump sum and bought
me presents, but she recognises the extent to which my own home life is disrupted and how much time I spend in doing all her
housework, laundry, shopping, taking her to hospital and doctor's appointments, chiropody, social outings, etc., and she
wanted to repay me.
as the "single" daughter in her 50's moved in with my increasingly infirm 89 yr. old father after my mother
died. My father , too, would be out of his beloved house and in another situation were it not for my move. I gave up my life
in Ohio to help out. No regrets, mind you, but soon found that my brother, who is married lives close by, but totally avoids
responsibility. In addition, he, as in your situation, can be quite critical, guessing my motives for the move, projecting
his own mindset into this situation, and gets upset when I ask for help.
Some Thoughts to Remember With Our Mothers in Mind
"For you know that afterward, when he
wanted to inherit the blessing, he was rejected, for he found no place for repentance, though he sought it diligently with
tears" (Hebrews 12:17). This verse holds many valuable applications for the one who would accept them.
the preceding verses, we learn that Hebrews 12:17 specifically refers to Esau. Esau sold his birthright to Jacob his brother
because he did not place the proper value upon it. "Thus Esau despised his birthright" (Genesis 25:34).
Later on, Jacob also got Esau's blessing (Genesis 27:30-34). By that time, he had a change of heart and desired to be
blessed. But his repentance (change of attitude about his birthright) "found no place" in that it could
do him no good.
How many opportunities will we miss because we did not recognize
the value of those things or love ones in our lives that we should cherish? Sometimes we despise what should be most important
in our lives until it is too late, like Esau.
Every person who comes into the world has
a valuable gift from God, their parents. It was so important to God that we value our parents that He has given numerous instructions
demanding our respect, devotion, honor, and love of our parents. Thus we can read, "Honor your father and your mother,
that your days may be long upon the land which the LORD your God is giving you" (Exodus 20:12). "Children,
obey your parents in the Lord, for this is right" (Ephesians 6:1). "There is a generation that curses its
father, And does not bless its mother" (Proverbs 30:11). We all ought to bless our mothers and respect our fathers.
But the greatest respect we can give our parents is to obey their commands and honor their
wishes. So often we offer substitutes instead of obedience. Let us do what they want.
I Samuel 15, we read where Saul king of Israel substituted his wishes instead of God's wishes. God wanted the sheep and
oxen of Amelek destroyed. But Saul and the people saved "the best of the sheep, the oxen, the fatlings, the lambs,
and all that was good, and were unwilling to utterly destroy them" (verse 9). Saul told Samuel, that this was done
"to sacrifice to the LORD your God" (verse21). Then Samuel said, "Has the LORD as great delight
in burnt offerings and sacrifices, As in obeying the voice of the LORD? Behold, to obey is better than sacrifice, And to heed
than the fat of rams. For rebellion is as the sin of witchcraft, And stubbornness is as iniquity and idolatry" (I
If you love your mother, show her love by obeying her voice. If we do
anything else, like Saul, it will do no good.
My mother died in June of 1995. Before she
died, I promised to take her out to eat. But I didn't. She asked me to move some materials in the yard. "I'll
get around to it," I said. But I didn't while she was alive to see it. She expressed other things that I did that
bothered her. "I'll get better on these Mama." Perhaps I did get better. After she died! And like Esau, I wept.
But it was too late. Too late to send flowers. Too late to give gifts. Too late to make her smile. To late to send her on
that trip she wanted. I'd just as soon have ashes in my hands for what I put my mother off for.
there are many of you today who do not have to make this same mistake. Won't you please more frequently call, more frequently
write, more frequently visit, and do what your parents want you to do as much as you can?
of the most important things we can learn from thinking about these things is the necessity of obeying God. Just as we should
honor and obey our parents, even more we should honor and obey God!
God commands all sinners
to believe the gospel of Christ, to repent of our sins, to confess His Son, and to be immersed in water for the remission
of sins (John 3:16; Romans 10:10; and Acts 2:38). If we delay too long to obey the gospel we might end up like Esau regretting
it but unable to do anything about it. "Then He will also say to those on the left hand, 'Depart from Me, you
cursed, into the everlasting fire prepared for the devil and his angels," (Matthew 25:41).
THE MAIL: "These articles have been good for me as a caregiver to both my parents and now my husband
which brings a whole other set of feelings and problems, when you lose the person with whom you have shared decisions and
responsibilities and they become like a child to you, it is a loss of your partner along with the burden of caregiving that
not many people understand."
NOTE FROM PAT: My heart
goes out to you. I have not experienced what you are going through and what little I can imagine, I would think it would be
terribly painful to emotionally lose the man you shared so much with. Because of my lack of experience I don't know the
best way to respond except with sympathy, however, I found a great site that may be a help to you - The Alzheimer's Spouse.
You didn't say what is causing your husband's dementia, but I after reading this site I see that not all the people
involved has spouses with Alzheimer's but they are dealing with other types of dementia as well.
- http://www.thealzheimerspouse.com/index.htm This is a great site for Alzheimer's spouses as well as other types
of dementia. It addresses the problem of losing the person(ality) you married, the emotional aspect as well as tips. It also
has a page for spouses to tell their "love story" and there is a humor page with true stories. The message board
is great. I've enjoyed reading it even though I don't have a spouse with dementia. The readers are informative, sympathetic, as
well as having a great sense of humor.
- http://www.volwilercounseling.com/subpage1.html1.html A good article to read.
I found this poem off of an Alzheimer's support
group site. Author is unknown.
going out for a while,
I don't think I'll be long.
I'm off to see my mother
and tell her what is wrong.
I'll speak of all my troubles, no doubt I'll shed some tears.
I'll tell her all my worries, and tell her all my fears.
Silent she will listen, and I'll continue on telling her my worries, saying what is wrong.
Then I will feel stronger, she
will help me cope.
carry on the best I can, to give me sense of hope.
I'll get up from her graveside, and make
my way back home.
To see my poorly husband, whose mind is so alone.
see he has Alzheimer's, a terrible disease.
Leaves an empty shell, like a tree which has
I'll help him with his supper, and rest him for the night. He will ask who I am, and I will say "Your Wife."
Easy Steps to Finding the
Best Adult Day Care Program
By Molly Shomer
Many caregivers are great fans of
good adult day activity programs. A good senior day program will offer benefits that staying at home during the day won't
ever provide: stimulating activities, experienced staff who aren't worn out, and respite for caregivers who need a break.
If you live in a metropolitan area there may be many adult day centers to choose from. Less populated parts of the
country may have fewer to choose from. Some are excellent, and some are not so good. How do you tell the difference between
an adult day center you would be thrilled for your elder to attend and one you should avoid? There are several steps you should
take to find the best day care program for your individual senior.
What You Need From An Adult Day Program
How much time will you need?...Do you need an occasional break, i.e., one or two
afternoons a week, from one to three full days each week, or five full days to accommodate your work schedule or other responsibilities?
Do you need transportation
Do you need a day care program that participates in Medicaid or where there is a sliding fee scale?
2. Determine What Your Elder Needs From A Day Care Program In Addition To Supervision
and Social Stimulation
A special diet
Help with personal care: bathing, shaving, hair care
Help with using the toilet
Help with walking or eating
Health status monitoring or
3. Locate Possible Day Care Centers
Locate local adult day care centers through
the Area Agency on Aging (1-800-677-1116) or your local senior center. When you call, ask about days and hours of operation,
the application process and fees. Then you can decide whether it's worth your while to make a visit. Ask whether they
have a brochure they can send you or a website you can visit.
Make an Investigation Visit
Is the facility clean, bright, well furnished and without odor?
Is every part of the building wheelchair accessible?
Does the furniture look comfortable?
Are there recliners available for those who need to rest? Do chairs have arms to assist with standing?
Is there a "sick"
room where participants can be isolated?
Is there a spacious bathing room for anyone who may have had an accident or who participates in
a bathing program?
Is there a quiet room for those who may need down time?
Do participants help plan activities?
Does everyone, staff and participants,
appear to be cheerful and happy to be there?
Is there a volunteer program? A pet program? Do children visit?
Who owns the facility, and
how long has it been in operation?
Is the center licensed?
How many staff does the facility have, and what is the staff to participant ratio?
What are the staff credentials,
and what additional training is provided?
What medical or cognitive conditions does the facility accept? Are wheelchairs allowed? Is incontinence
What are the days and hours of operation?
Is transportation available?
Is there financial assistance available?
What are typical activities, and can participants choose whether they wish to participate? What
arrangements are available for those who do not want to participate in a particular activity?
What are the costs for part and full day? Is there a discount for attending several days per week or per month?
At what stage will the center
suggest that it is time for your senior to withdraw from the program?
Are there support services or programs for families and caregivers?
5. Give Any New Adult Day Center A Real Try
a trial run at the adult day activity center that appears to meet your needs best. Don't be surprised if your elder is
reluctant. It often takes several visits before an individual feels comfortable in new surroundings. Those with dementia are
often frightened until new places become familiar. Experienced staff will anticipate reluctance and will know how to overcome
these initial fears, so don't be too quick to conclude that a good day program won't work.
She’s Still My Mother
By Jerry Ham
still my mother, who's standing there.
It's still her eyes, her face, her hair.
It's still her body, but it's
just a shell,
Of the mother that I once knew so well.
She's still my mother, who looks at me,
Then asks the question, "Who might you be?"
Her memory's fleeting, her gait is weak.
long gone are those she seeks.
She's still my mother, whose angry words,
Like a sharpened sword,
my soul can hurt.
She's still my mother, who shares our home,
This one we dress, whose hair we
She's still my mother...I know tis true.
And so dear God, I turn to You.
me patience, wisdom, and love,
Til the day that You take her to heaven above.
Let me return...if even through
The love she gave me through all these years.
Though she often thinks that I'm her brother,
love her yet...she's still my mother.
Copyright © 1997 Jerry Ham
Ten Tips For Family Caregivers.
1. Caregiving is a
job and respite is your earned right. Reward yourself with respite breaks often.
Watch out for signs of depression, and don't delay in getting professional help when you need
3. When people offer to help, accept the
offer and suggest specific things they can do.
4. Educate yourself about your loved one's condition and how to communicate effectively
5. There's a
difference between caring and doing. Be Open to technologies and ideas that promote your
loved one's independence.
6. Trust your instincts. Most of the time they'll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing,
and pulling. Be good to your back.
8. Grieve for your loses, and then allow yourself to dream new dreams.
Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a
caregiver and a citizen.
Caring for Adults
with Cognitive and Memory Impairments (Part One)
Caregiving: A Universal Occupation
Most people will become caregivers—or need one— at some point in their lives. A caregiver is
anyone who provides basic assistance and care for someone who is frail, disabled or ill and needs help. Caregivers perform
a wide variety of tasks to assist someone else in his or her daily life, for example, balancing a checkbook, grocery shopping,
assisting with doctor’s appointments, giving medications, or helping someone to eat, take a bath or dress. Many family
members and friends do not consider such assistance and care “caregiving”—they are just doing what comes
naturally to them: taking care of someone they love. But that care may be required for months or years, and may take an emotional,
physical and financial toll on caregiving families.
For some people, caregiving
occurs gradually over time. For others, it can happen overnight. Caregivers may be full- or part-time; live with their loved
one, or provide care from a distance. For the most part, friends, neighbors, and most of all, families, provide—without
pay—the vast majority of care.
American families care for an adult with a cognitive (brain) impairment. Cognitively-impaired people have difficulty with
one or more of the basic functions of their brain, such as perception, memory, concentration and reasoning skills. Common
causes of cognitive impairment include Alzheimer’s disease and related dementias, stroke, Parkinson’s disease,
brain injury, brain tumor or HIV-associated dementia. Although each disorder has its own unique features, family members and
caregivers often share common problems, situations and strategies.
Caregiving and Cognitive Impairments
We know that cognitive and memory impairments can change how a person thinks, acts and/or feels. These changes
often present special challenges for families and caregivers. An ordinary conversation, for example, can be quite frustrating
when your loved one has difficulty remembering from one moment to the next what has been said.
Individuals with moderate to severe dementia or another cognitive impairment often require special care,
including supervision (sometimes 24 hours a day), specialized communication techniques and management of difficult behavior.
They may need help with activities of daily living (called “ADLs”), such as bathing, eating, transferring from
bed to a chair or wheelchair, toileting and/or other personal care..
Individuals with cognitive impairment may experience a range of behavioral problems that can be frustrating
for caregivers. These might include communication difficulties, perseveration (fixation on/repetition of an idea or activity),
aggressive or impulsive behaviors, paranoia, lack of motivation, memory problems, incontinence, poor judgment and wandering.
Some people may develop behavioral problems early on, while others go their entire illness with only minor issues. Most cognitively-impaired
persons fall somewhere in the middle, having good days and bad days (or even good or bad moments). Anticipating that there
will be ups and downs, and maintaining patience, compassion and a sense of humor will help you cope more effectively with
difficult behavior. It’s important to remember that it’s the disease, not the person, causing the behavior.
Helpful suggestions for managing these problems include
communication techniques, such as keeping language simple and asking one question at a time. Break down tasks and questions.
For example, instead of asking, “would you like to come in and sit down and have a snack?,” use simple statements
such as, “sit down here,” and “here’s a snack for you.”
Wandering and poor judgment may signal the
need for 24-hour supervision. Be sure to review the home safety checklist on page 4 and know whom to contact in your community
in case of an emergency. If wandering or aggressive behaviors are problems, you may need to contact emergency, police, fire
or medical systems. (For additional in-formation, see FCA Fact Sheets Caregiver’s Guide to Understanding Dementia Behaviors, and Dementia, Caregiving and Controlling Frustration.)
©Family Caregiver Alliance
Caring for Adults with Cognitive
and Memory Impairments
Steps to Get You Started.
Whether you have moved into the role of caregiver gradually or suddenly, you may feel alone,
unprepared and overwhelmed by what is expected of you. These feelings, as well as other emotions—fear, sadness, anxiety,
guilt, frustration and even anger—are normal, and may come and go throughout your time of providing care. Although it
may not seem possible, along with challenges will come the unanticipated gifts of caregiving—forgiveness, compassion,
courage—that can weave hardship into hope and healing..
Each caregiving family faces unique circumstances, but some general strategies can help you
navigate the path ahead. As a traveler in new terrain, it is wise to educate yourself as best you can about the landscape
and develop a plan accordingly, with the flexibility to accommodate changes along the way. Below are ten steps to help you
set your course..
1. Lay the foundation. Establishing a baseline
of information lays the groundwork for making current and future care decisions. Talk with your loved one, family and friends:
What was mom “normally” like? How has she changed? How long has she been forgetting to take her medicine? When
did she stop paying her bills? Answers to questions such as these help create a picture of what is going on and for how long.
This basic information not only gives you a realistic view of the situation, but also provides an important foundation for
professionals who may be called in to make a more formal assessment.
Step 2. Get a medical assessment and diagnosis. It’s very important
for your loved one to get a comprehensive medical exam from a qualified health care team that reviews both physical and mental
health. Many medical conditions can cause dementia-like symptoms, such as depression and medication interactions. Often these
conditions can be reversed if they are caught early enough. Additionally, new drug treatments for diseases such as Alzheimer’s
and Parkinson’s diseases may be most effective in the early stages of the disease. A confirmed diagnosis is essential
in accurately determining treatment options, identifying risks and planning for the future. Take your loved one to a memory
disorder clinic, if one exists in your community, to get an accurate diagnosis...
Step 3. Educate yourself, your loved one and your family. Information is empowering. Talk to doctors, health and
social service professionals, and people going through similar experiences. Read books and brochures. Do research at the library
and on the Inter-net. Learn how the disease progresses, the level of care that will be needed, and what resources may be available
to help. Keep a notebook and a file folder of information you collect that you can refer back to when needed. Knowledge will
increase your confidence and may reduce the anxiety and fear that many of us feel in the face of the unknown. (See the FCA
Fact Sheet on Community Care Options for more information about finding help in your community.).
Step 4. Determine your loved one’s needs. Care assessment tools include a variety of questionnaires and tests
designed to determine the level of assistance someone needs and establishes their personal preferences for care (e.g., bathing
in the morning rather than the afternoon). Each situation is different. While one person in the beginning stages of Alzheimer’s
may need assistance with grocery shopping and bill paying, another in later stages may have problems with dressing, eating
usually consider at least the following categories
Personal Care: bathing, eating, dressing, toileting, grooming
Household Care: cooking, cleaning,
laundry, shopping, finances
Health Care: medication management, physician's appointments, physical
Emotional Care: companionship, meaningful activities, conversation
oversight for safety at home and to prevent wandering
Some hospitals, Area Agencies on Aging (AAAs), city or county agencies,
Caregiver Resource Centers, or other government or private organizations offer consultation and assessments specifically designed
for older people (called geriatric or needs assessments) for little, if any, cost. Another option is hiring, for a fee, a
geriatric care manager or licensed clinical social worker. (See Resources on page 6 for help in locating someone near you.)
These professionals can be helpful in guiding you to the best care in your area, advise you on community resources, assist
in arranging for services, and provide you and your loved one with continuity and familiarity throughout the illness..
Step 5. Outline a care plan. Once your loved one has received a diagnosis
and completed a needs assessment, it will be easier for you, possibly with help from a professional, to formulate a care plan—a
strategy to provide the best care for your loved one and yourself. It’s a good idea to take some time to think about
both short- and long-term needs..
will always be a “work in progress,” as your loved one’s needs will change over time. To start developing
a plan, first list the things you are capable of, have time for, and are willing to do. Then list those things that you would
like or need help with, now or in the future. Next, list all your “informal supports”—that is, siblings,
other family, friends, neighbors—and think about how each person might be able to provide assistance. List any advantages
and disadvantages that might be involved in asking these people to help. Write down ideas for overcoming the disadvantages.
Repeat the list for “formal” support (e.g., community services, paid home care workers, day programs)..
It is important to set a time frame
for any action or activities planned. Also, it is wise to have a back-up plan should something happen to you, both for the
short-term and the long-term..
Step 6. Look at finances. Most
people prefer to keep their financial affairs private. In order to best prepare and provide for a loved one’s care,
however, you will need to gain a full understanding of his or her financial assets and liabilities. This transition can be
uncomfortable and difficult. Consider having an attorney or financial planner assist you through the process (see the FCA
Fact Sheet, Legal Issues in Planning for Incapacity). Assistance from a trained professional may reduce family tension and, if desired, provide you with a professional financial
assessment and advice. Try to include your loved one as much as possible in this process.
Next, develop a list of financial assets and liabilities: checking
and savings accounts, Social Security income, certificates of deposit, stocks and bonds, real estate deeds, insurance policies
and annuities, retirement or pension benefits, credit card debts, home mortgages and loans, and so forth. It’s best
to keep all these records in one or two places, such as a safety deposit box and a home file cabinet, and regularly update
them. Keep a record of when to expect money coming in and when bills are due. You may need to establish a system to pay bills—perhaps
you’ll need to open a new checking account or add your name to an existing one..
Step 7. Review legal documents. Like finances, legal matters can also be a delicate, but necessary, subject to discuss.
Clear and legally binding documents ensure that your loved one’s wishes and decisions will be carried out. These documents
can authorize you or another person to make legal, financial and health care decisions on behalf of someone else. Again, having
an attorney bring up the issue and oversee any necessary paperwork can take the pressure off of you, as well as provide assurance
that you are legally prepared for what lies ahead. (For more information about types of legal documents, see FCA Fact Sheets
Legal Issues in Planning for Incapacity, Durable Powers of Attorney and Revocable Living Trusts, and Advance Health Care Directives.).
Other legal documents that
you will want to find and place in an accessible location include Social Security numbers, birth, marriage and death certificates,
divorce decrees and property settlements, military records, income tax returns, and wills (including the attorney's name and
executor), trust agreements, and burial arrangements. (See FCA website page Where to Find My Important Papers at: www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=851.).
At some point, you may need
to determine eligibility for such public programs as Medicaid. It’s helpful to speak with an elder law specialist. Information
about low-cost elder legal services may be available through the Area Agency on Aging in your community..
Step 8. Safety-proof your home. Caregivers often learn, through trial and error, the best ways
to help an impaired relative maintain routines for eating, hygiene and other activities at home. You may need special training
in the use of assistive equipment and managing difficult behavior. It is also important to follow a safety checklist:.Be aware of potential dangers from:
Be sure to provide:
- Fire hazards such as stoves, other
appliances, cigarettes, lighters and matches;
- Sharp objects such as knives, razors and sewing needles;
- Poisons, medicines, hazardous household products;
- Loose rugs, furniture and
- Inadequate lighting;
- Water heater temperature—adjust
setting to avoid burns from hot water;
- Cars—do not allow an impaired person to drive;
- Items outside that may cause falls, such as hoses, tools, gates.
- Emergency exits, locks to secure the house, and, if necessary,
door alarms or an identification bracelet and a current photo in case your loved one wanders;
grab bars, non-skid rugs, paper cups rather than glass;
- Supervision of food and alcohol consumption
to ensure proper nutrition and to monitor intake of too much or too little food;
- Emergency phone numbers
- Medication monitoring.
9. Connect with others. Joining a support
group will connect you with other caregivers facing similar circumstances. Support group members pro-vide one another with
social and emotional support, as well as practical information and advice about local resources. Support groups also provide
a safe and confidential place for caregivers to vent frustrations, share ideas and learn new caregiving strategies. If you
can’t get away from the house, online support groups offer opportunities to connect with other caregivers nationwide.
(See Resources below to find a support group.) Another way to meet others going through a similar experience is by attending
special workshops or meetings sponsored by organizations such as the local chapter of the Alzheimer’s Association or
Multiple Sclerosis Society..
10. Take care of yourself. Although this step
appears last on this list, it is the most important step. Caregiving is stressful, particularly for those caring for someone
with dementia. Caregivers are more likely than their non-caregiving peers to be at risk for depression, heart disease, high
blood pressure and other chronic illnesses, even death. Caregivers of persons with dementia are at even higher risk for poor
health. The following simple, basic preventative healthcare and self-care measures can improve your health and your ability
to continue providing the best care for your loved one.
Practice daily exercise. Incorporating even a small amount of regular
exercise into your daily routine can do wonders—it can improve your night’s sleep, reduce stress and negative
emotions, relax muscular tension, and increase your mental alertness and energy levels. The latest research shows health benefits
from walking just 20 minutes a day, three times a week. Talk to your doctor about an exercise routine that is best for you.
meals and snacks. Caregivers often fall into poor eating habits—eating too much or too little, snacking on junk food,
skipping meals and so on. Much of eating is habit, so make it a point each week to add a new healthy eating habit. For example,
if breakfast is simply a cup of coffee, try adding just one healthy food—a piece of fresh fruit, a glass of juice, whole-grain
toast. Small changes add up, and can be realistically incorporated into a daily schedule.
Get adequate sleep. Many caregivers
suffer from chronic lack of sleep, resulting in exhaustion, fatigue and low energy levels. Depleted physical energy in turn
affects our emotional outlook, increasing negative feelings such as irritability, sadness, anger, pessimism and stress. Ideally,
most people need six to eight hours of sleep in a 24-hour period. If you are not getting enough sleep at night, try to take
catnaps during the day. If possible, make arrangements to get at least one full night’s rest each week or several hours
of sleep during the day. If the person you care for is awake at night, make arrangements for substitute care or talk to his
or her physician about sleep medication.
Get regular medical check-ups. Even if you have always enjoyed good health, being a
care-giver increases your risk for developing a number of health problems. Regular medical (and dental) check-ups are important
health maintenance steps. Inform your doctor of your caregiving role and how you are coping. Depression is a common and treatable
disease. If you are experiencing symptoms such as a lingering sadness, apathy, and hopelessness tell your doctor. (See the
FCA Fact Sheet, Caregiving and Depression.) Take time for yourself. Recreation is not a luxury, it is a necessary time to “re-create”—to
renew yourself. At least once a week for a few hours at a time, you need time just for yourself—to read a book, go out
to lunch with a friend, or go for a walk. (See the FCA Fact Sheet, Taking Care of YOU: Self-Care for Family Caregivers for more helpful tips.)
©Family Caregiver Alliance
with Cognitive and Memory Impairments
Respite: A Key to Preventing Caregiver
If you care for a person with dementia, you face even greater
risks for health problems than other caregivers. You are particularly at risk for caregiver burnout—a state of mental
and physical exhaustion brought on by the physical, mental, emotional and/or financial stresses of providing ongoing care,
usually over a long period of time. Symptoms include difficulty concentrating, anxiety, irritability, digestive problems,
depression, problems sleeping and social withdrawal. Caregiver burnout puts both you and your loved one at risk. It is one
of the most-cited reasons for caregivers placing a loved one in a nursing home or other long-term care facility.
One of the most effective ways to prevent caregiver
burnout is by taking care of your physical health needs, as well as your mental and social health needs. Essential to meeting
these needs is to schedule regular time off from your caregiving duties. If you do not have a neighbor, family member or friend
nearby who can provide dependable weekly help, look into respite services in your community
Respite literally means a rest—a break away from the demands of caregiving.
Respite can be arranged for varying lengths of time—a few hours, overnight, a weekend, even for a week or longer. It
can be pro-vided in your home or in a facility such as adult day care or a nursing home. In-home attendants may be employed
by an agency, self-employed or volunteers. Respite care can be arranged privately for a fee, paid for by some long-term care
insurance policies, or sometimes provided by government or private organizations.
Locating Caregiver Resources
The number of services for cognitively-impaired adults, their families and caregivers
is growing, al-though in some communities, agencies may be difficult to locate. A good place to start is the Eldercare Locator,
a free nationwide toll-free service that is designed to assist older adults and their caregivers to find services in their
community. Family Caregiver Alliance offers assistance as well.
Consider contacting senior centers, independent living centers, Area Agencies on Aging, local chapters
of national organizations and foundations such as the Alzheimer’s Association, Brain Injury Association, Multiple Sclerosis
Society, Parkinson’s groups and others. Nursing home ombudsman programs, community mental health centers, social service
or case management agencies, schools of nursing, and church groups may be other sources of assistance. In California, regional
Caregiver Resource Centers offer information and services. Most supportive organizations are listed in the phone book under
“Social Services” or “Seniors,” and many are on the Internet. Each time you talk to someone, ask for
referrals and phone numbers of others who may assist you.
The Internet provides a wealth of information for
caregivers, from an organization’s mission and contact information, to online support groups, to articles about overcoming
the challenges of caregiving. Most public libraries, universities and many senior centers have computers and Internet access
available for free public use. If you do not know how to use a computer or how to access the Internet, don’t be shy—organization
personnel are trained to how you how to get the information you are looking for. Once you get to a search engine such as Yahoo
or Google, type in the search terms—the general information you are seeking, such as, “adult day care Sacramento, California” or “Alzheimer’s disease support groups,”
and you will usually get a number of options to choose from. If you do not succeed the first time, try changing the search
terms, such as “respite care Sacramento California” or “caregiver support
One word of caution: as with any printed material, read
with a healthy skepticism—just because it is on the Internet does not make it true. If in doubt, check the information
with another independent resource and talk to your loved one’s doctor before proceeding, especially in regard to medications.
Remember, just because a product is called “natural” or “herbal” does not mean it is harmless, particularly
when mixed with other medications.
A number of caregiver resources are available to you—all
you need to do is ask for help. You do not have to do it alone
©Family Caregiver Alliance
@ @ @
Home Care Safety for the Caregiver
Improving support and safety throughout the home:
- Have smoke detectors installed near kitchen and bedrooms
- Have safety rails in showers and tubs
handrails up stairs and in bathrooms
- Use non-slip flooring in kitchens
- Remove any loose rugs
- Move furniture around to create less confusion
any dangling telephone cords
- Mirrors can distort the loved one’s
view when walking, and should not be placed where they can easily be bumped into
Ways to correct visibility and lighting problems:
- Use bright, vivid colors to light up rooms
sure hallways and stairways are well lit
- Lighted switch plates make
finding switches at night easier
- Have night lights in between bedrooms
- Use easily reached cords that can turn a light on and
off in closets
- Basements should be very well lit considering the steepness
of stairs going up and down
Methods to improve movement
and sight throughout the house:
- Use rails in beds to support
movement getting in and out of bed
- Use lever handle door knobs instead
of circular knobs
- Use a flexible shower head and a chair for your loved
one to sit on when bathing
- If they are wheelchair bound, have a ramp
installed that can be used to get them up the front steps or stairways
large button telephones
- Clocks should be large enough with both numbers
and dials easily seen
- A commode near their bed can be used in emergencies
- Shelving in closets should sit low enough for easy access
- Place a raised toilet seat in their bathroom
- Chairs need to sit high enough and be supported by arm rests so there is some security when they sit
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