2, Issue 14
July 23, 1999
This issue is to remind us all, whether we are new to caregiving or
whether we've been doing it for years, that we need to care for
ourselves as well as our loved one. I think we all need to be
reminded of this once in a while. We do tend to get caught up in
the different situations that come up and forget ourselves.
Taking care of a
loved one with Alzheimer's disease is very stressful. Caregivers
react to their stress individually. What follows is a list of
possible reactions. If you answer "yes" to any of these
questions, you're suffering caregiver distress. The more yes
answers, the closer you are to burning out. Take some time to
consider how you might take better care of yourself. Material
available throughout TAKING CARE...OF YOURSELF can help.
- Have you withdrawn from close friends?
Shorter phone calls? Routine refusals of invitations? The
responsibilities of caregiving almost always involve seeing less
of acquaintances, but if you've withdrawn from close friends, you're
- Have you given up your favorite pastimes?
The demands of
caregiving always mean less time for gardening, movies, hobbies,
and other activities you enjoyed before you became an Alzheimer's
caregiver. But if you've cut them out entirely--or almost
entirely--you're in distress.
- Are you feeling persistently blue, irritable, helpless, or
These are classic symptoms of depression. Of course,
taking care of anyone with Alzheimer's disease is inherently
depressing. It's awful to watch a loved one decline, and have to
take over management of another person's life. But if you develop
any of these symptoms, you're in distress.
- Do minor upsets make you cry?
This is another symptom of
depression. It's natural to be moved to tears as you watch the
affected individual lose some long-cherished skill, for example,
pie-baking or woodworking. But if you find yourself weeping
frequently over inconsequential things, you're in distress.
- Do minor upsets make you furious?
Are you yelling at your
loved one more lately? Do you have increasing difficulty
controlling your temper with other people? It's natural to go
over the edge if the Alzheimer's sufferer breaks a precious
family heirloom. But if you fly off the handle when a friend
arrives 15 minutes late for a date, or when your children leave
some dishes unwashed, or when the person ahead of you in the
supermarket express checkout line has 11 items instead of the
limit of 10, you're in distress.
- Have you gained or lost more than five pounds in the last few
Weight changes are another sign of depression-stress-burnout.
- Do you have trouble sleeping?
Caring for a loved one with
Alzheimer's disease can cause periodic anxiety dreams, nightmares,
and unwelcome wake-ups in the wee hours. But if you experience
frequent sleep disturbances, you're in distress.
- Do you feel exhausted all the time?
The demands of
Alzheimer's caregiving are exhausting. But if you frequently wake
up feeling you can't get out of bed despite a good night's sleep,
you're in distress.
- Do you seem to be getting ill more often than you used to?
The immune system is what protects us from illness and helps us
recover when we get sick. Many things can impair immune function,
among them: fatigue, depression, and stress. It's natural for
Alzheimer's caregivers to catch an extra cold or two a year
because of the demands of caregiving. In fact, a 1996 Ohio State
study showed that flu shots were less effective in Alzheimer's
care givers because the stress of caregiving had impaired their
immune function (Science News, 4-13-96). But if you seem to be
getting one illness after the next, and if they linger longer
than you think they should, you're in distress.
- Have you recently developed any chronic health problems?
These might include: headaches, back or neck pain, stomach
distress, diarrhea, constipation, or heart palpitations, among
others. It's natural to experience any of these from time to time.
But if they become persistent, chances are you're in distress.
- Do you ever think: "I can't take this anymore?."
It's natural to react to life's daily pressures and absurdities
by occasionally feeling: "Get me out of here." But when
escape fantasies become frequent, you're in distress.
Getting the Help You
Physicians, counselors, and social workers who work with Alzheimer's
caregivers are unanimous in the opinion that caregivers must
arrange time off for themselves at regular intervals, preferably
frequently. But some caregivers feel that spending time away from
the affected loved one is "selfish." On the contrary.
If you want to provide quality care, time off, or respite, it is
an absolute necessity. Here's why:
- Time off allows you to rest and recharge your physical and
Alzheimer's caregiving is a 24-hour-a-day
job. But no one can work 24 hours a day and perform well over
time. You need some respite for both your own sanity, and to
maintain quality care. Do things you like to do. Have fun. You
deserve time off. Take it.
- Time off allows you to invest some energy in your other
Spouses, children, friends, and other
relatives--all those relationships require nurturing. The world
of the Alzheimer's caregiver often collapses into just you and
the affected loved one. When taking care of someone with the
disease, it's natural to put relationships with acquaintances on
hold. But don't do that with people who are important to you. You
need them, and they need you.
- Time off allows you to attend a support group.
groups are a godsend for caregivers. The latest research shows
that the support, suggestions, and resources they provide can
delay nursing home placement by about a year.
- Time off allows you to make arrangements for the affected
It takes time and focus to deal with many of the
implications of Alzheimer's caregiving: financial and legal
matters, visiting agencies, daycare centers, and nursing homes,
etc. If the person with Alzheimer's is with you, you may not be
able to concentrate on matters that deserve your undivided
Of course, taking time off requires making arrangements, and
often paying for respite care. Like so many other aspects of
Alzheimer's care, the key is to get organized. Look at your loved
one's remaining abilities. Decide what kind of help works best
for the person and for you. Then look at your week, and arrange
to have some blocks of time to yourself.
Here are some suggestions:
- Consider non-caregiving help.
You might want help caring for the
affected person. Or you might want help with non-caregiving
chores so you can devote your time and energy to Alzheimer's care.
In general, it's easier to arrange for non-caregiving help
because it's less demanding physically and emotionally.
- If you love to cook, or garden, or do laundry, or clean house, by
all means, keep doing them.
But most people would gladly give up
at least some household chores if they could, especially when
they're preoccupied with Alzheimer's caregiving. Family and friends might
help with non-caregiving chores, but you
might want to "save" them for caregiving help.
- Consider hiring a neighborhood teen to tend your garden, shovel
snow, run errands, or do other chores for you.
Teens are often
glad to work for the minimum wage, and in addition to making
money, they gain invaluable experience about life by being around
you as you care for your loved one. Incorporating neighborhood
teens into your care plan also helps your neighbors adjust to the
idea of having a person with Alzheimer's in the neighborhood.
- Consider hiring a neighbor to help with your housekeeping.
Compared with teens, homemakers, retirees, disabled people or
other nearby adults with time on their hands can manage more
responsibility--and may not charge much more either. A network of
nearby helpers can work wonders for your peace of mind when minor
emergencies arise. And neighbor-helpers help the neighborhood
adjust to having a person with Alzheimer's disease in the area.
- Consider delivery services.
Most cities have grocery-delivery
services for the elderly, disabled, or for people who simply
would rather not shop. An increasing number of restaurants
deliver, and many areas have Waiters on Wheels services--special
services that publish books of menus from selected restaurants,
pick up meals you order, and deliver them to you. A few take-out
or delivered meals a week can be a tremendous help. Many areas
also have low-cost Meals on Wheels programs for the elderly and
- Caregiving help from family members.
This can be tricky.
Sometimes, as it becomes clear that the affected person can no
longer live independently, family members promises to "be
there for you" when you take the loved one into your home or
move in with the person. They may come through. But sometimes
vague promise don't translate into real help. This is not only
disappointing. It can also cause deep resentments, especially if
the promise of help played a role in your decision to take on
If at all possible, before you begin caregiving, sit down with
relatives who say they want to help and get them to commit to
specific times on specific days, or specific chores. Ideally, get
these commitments in writing. Asking for specific written
commitments does not mean that you mistrust your relatives. You
are about to embark on one of the most challenging tasks people
undertake. You need to know exactly what kind of help you can
expect. When commitments are left vague, misunderstandings are
much more likely. Get it in writing.
Who knows as much as you do about Alzheimer's
caregiving? Other people who are doing the same thing. If you
belong to an Alzheimer's support group, perhaps you and another
member can arrange to take turns giving each other time off by
caring for both of your loved ones. Of course, this may be tough
for the person doing the caregiving. But depending on your loved
ones' stage of the disease and they get along, they may help
amuse each other and take pressure off the caregiver.
- Caregiving help from friends.
This can also be tricky. Friends
often want to help, but it can be difficult to know how much help
they are truly willing to provide and how often. Some caregivers
wind up imposing. Others are afraid to ask for help for fear of
imposing. The best course of action is to have a heart-to-heart
talk with close friends before you become a caregiver. Tell them
you're seriously considering caregiving. Talk about your feelings
and the changes the move will bring to your life and your
friendships. Don't ask for help, but if a friend offers, ask for
the same specifics you might ask of a relative. Don't be
surprised if friends follow through for a while, and then
- Help from religious or social organizations.
Church or social
organizations (Lions, Kiwanis, Junior League, etc.) may be
willing to help out from time to time, especially with specific
projects, for example, spending one day moving your loved one
from independent living into your home. Assess your extended
social support network, and then consider how to use it most
strategically. Church groups and other clubs may not be willing
or able to commit to ongoing help, but every now and then, they
might be very helpful.
- In-home aids.
Many different types of people can provide in home
care. The most skilled--and expensive--are nurses. Nurses can be
invaluable if the person has a physical illness or disability
that requires nursing care. If so, Medicare may help pay for in-home
nursing care. But most people with mild to moderate Alzheimer's
disease don't need highly skilled nursing care. They're
reasonably healthy--except that they have Alzheimer's.
Other types of in-home helpers function more on the order of paid
companions and sitters. Their training varies, and some may have
had no formal training at all. Get referrals from your Alzheimer's
caregiver support group, the Alzheimer's Association, other local
senior citizens organizations, social workers, or religious
- Adult daycare.
Adult daycare not only provides welcome respite
for caregivers, but quite frequently, it also provides clear
benefits to people with Alzheimer's disease. Just as you need
time away from your loved one, people on the receiving end of
Alzheimer's care often feel a need for time away from their
primary caregivers. They often enjoy being around people their
own age in a facility that caters to their needs and interests in
ways you may not be able to, for example, by playing the music
they grew up with. Alzheimer's caregivers often find that once
their loved ones get used to going to adult daycare, they look
forward to it, have fun, make friends (to the extent they can),
and return home more relaxed.
Adult daycare centers offer a variety of group activities, among
them: music, games, stories, and exercise, along with lunch,
snacks, and sometimes pick-up and drop-off. Different centers
offer different programs. Visit the one(s) in your area and see
which one you like best.
Evaluate adult daycare centers as you would a nursing home.But
because your loved one does not live there and may only
participate a few days a week, you don't have to be quite as
picky. Adult daycare centers typically admit participants with a
variety of health problems, but the one(s) in your area may or
may not welcome people with Alzheimer's disease. On the other
hand, some centers specialize in people with dementia.
Daycare can also help pave the way for eventual nursing home
placement. Some daycare centers are affiliated with nursing homes.
The combination often eases the transition into nursing home care
because by the time the person needs to become a resident, the
facility and staff are familiar.
- Short-stay nursing homes.
It's a special tour, or a big
anniversary, or a major family celebration halfway across the
country. You'd love to go, but your loved one with Alzheimer's is
not up to the trip, and there's no one willing to be the
caregiver for the 10 days you'd like to be away. Some nursing
homes are set up to allow for short stays. Only a minority of
nursing homes do this, but if one near you does--or even one a
few hours drive away--the service can be a wonderful respite for
If you are going to be in the Grand Junction, Colorado area, the
Greater Grand Junction Chapter of the Alzheimer's Association has
invited me to present and sign my newest book, "Where's
my shoes?" My Father's Walk Through Alzheimer's on
Saturday, 24 July from 2 - 4 p.m. Baird Brown's offices (Elder
Law Attorney) call 970-243-8250.
Then I will sign books from 6:30 to 8:30 p.m. at the Mesa Mall at
the AARP site near the Food Court at 2424 US Highway 6 & 50.
If you are there, come by and say "hello!"
There may be media interviews which will air on the 5 and 10'oclock
On Wednesday evening, the 28th of July, I will do a presentation
at Verbatim Books in Vail, Colorado from 5 - 7 p.m. This is being
co-sponsored by the Rocky Mountain chapter (Denver) of the
Alzheimer's Association. Trivia: Verbatim hosted Peter Jennings
and Tom Brokow and drew 500 and 300 people respectively. Verbatim
is located on 450 East Lionshead Cir 970-476-3032.
Please come and introduce yourself if you can attend! I would
love to see you!
The Caregiver's Voice
Speaker and Author
shoes?" My Father's Walk through Alzheimer's
I contacted one of our readers recently to get information. I thought she was the
person who had mentioned a while back about printing up a
business card to hand out to people who may deal with our loved
ones. I thought it was a great idea since you don't run the risk
of embarassing your loved one with an explanation. Our sweet Emjay215 took the time to scan a card and emailed
it to me. I will not add the picture here since many do not use
AOL. I will instead type it all in. I hope it will be useful to
The person with me
has Alzheimer's Disease,
and may require a
few extra moments.
Thank you for understanding.
A word about
Despite extensive research, Alzheimer's remains one of the
misunderstood afflictions in the world today. Over 4 million
suffer from its effects, which begin with forgetfulness and lead
mental and physical losses requiring total care.
Its onset is subtle, and is often mistaken for senility, as it
always affects older people. It is progressive, irreversible,
ultimately fatal. It is not contagious. Some forms are hereditary.
For more informations, write to the Alzheimer's Association,
919 N. Michigan Ave, #1000. Chicago, IL 60611, or call (800)272-3900
Note: This card is available for download in Microsoft Word format. To use these files, click on the first link below (card front). Open the file if it doesn't automatically appear. Next, print the document. Place the printed pages back in the printer's paper tray so that the page back can be printed. Return to this page (if the doument appeared automatically, press the "Back" button to return to this page, otherwise, close Microsoft Word). Repeat these steps, this time by selecting the second link (card back).
Card Front Card Back
I have been getting your newsletters for quite some time now, and
I actually spoke to Jamie with my mom about a year ago. I am 25
years old, and for about 3 years my grandmother moved in with my
parents and I when I was 17. She now is in a nursing home not far
from my parents, and I do visit with her often. Jamie said I was
such a special person, being that I cared and was an active
caretaker for my grandmother when she lived with us. I had such
hard times over it, but I also made it as enjoyable too.
My grandmother had a mini-stroke when I was 17 and she moved in
with us after being on her own for 15 years after my grandfather
died. It was such a big adjustement for all of us, my parents, my
grandmother, and myself. I was a responsible kid before that, and
people always told me that I was more mature than most kids my
Over the three years when Grandma lived with us, her health
deteriorated, as well as her mental status. I think we all tended
to look away with alot of things, saying it was just normal and
such. My mother and myself were her primary caregivers. I
remember numerous occasions sacrificing my weekend nights so my
parents can go out, and give them a break from staying home with
Grandma (she wasn't very happy about being left alone). And I was
only 17. My friends grew patience with the whole thing, and if
anything, enjoyed coming over and talking with my grandmother. I
incorporated her into alot of things, shopping for starters. I
don't think I didn't go to the mall every Wednesday for senior
citizen discount day :)
I always had a special relationship with Shirley (my grandmother)
since I was her only grandson. She lived in Brooklyn, NY and we
lived in Westchester. Before her mini-stroke we used to visit
every other weekend, and I always looked forward to it. I think I
reminded her alot of my uncle who passed a way a few years before
from cancer. All in all, my grandmother went through alot,
immigrating before the world war, losing her husband and sons
both at young ages. And she always had strength and courage. I
think that is why it was so hard for me to see the signs of
When I left for college, I felt bad that it was going to be my
mother primarily as her caretaker alone. She didn't have the
luxury of a fellow sibling or other family members to help out
with. I felt guilty for leaving, but over time I got over it and
learned I was not abandoning anyone. It was odd for me to make
plans without having to think of other's schedules. Don't get me
wrong, my parents never made me stay home, or take Grandma
anywhere, I wanted to do it. I wanted to do it primarily for her,
but to also make sure my parents had a life too. I was told I was
the most unselfish teenager possible :)
My parents moved to Florida my freshman year, and Grandma moved
at the same time to an assisted living center here near my
parents in FL. That is when the Alzheimer's really kicked in, her
health was pretty good and she recovered well from the stroke. I
remember talks with her on the phones led to hangups for no
reason, or choppy phone conversations. It upset me greatly, but I
always put on a happy face with her. She never vocalized or
looked frustrated from Alzheimers, but I know inside she was.
Now, 5 years later after their move to FL, I am too now in
graduate school down here, about 1/2 hour away from Grandma, and
the same distance to my parents. She is in a nursing home, unable
to walk by herself, and she doesn't speak. She still smiles when
she sees me, and all the staff say she looks so happy when my
mother and I come to see her as often as we do. I talk to her
just as if she was talking back to me, telling her how school is,
and what is new in my life. It saddens me to see her like this
though, I have my up and down days with it. And I know my mother
feels the same, if not alot worse about it. My sister got married
four months ago, and my grandmother wasn't there to see it. It
ripped all our hearts out that taking her to the wedding would
have been to "stressful" for her, and sometimes she has
really long days of just not looking happy and crying at times,
and then cheers up quickly. I can tell at times she tries to say
things also, and it hurts even more.
I don't come to the chats often, since my schedule is really
hectic, but I find as much time as possible to see Grandma. when
I get finals and such, I feel bad not for visiting, but my
friends say she would WANT you to study, and I know she would. I
still picture her responses when I ask questions. I miss our
phone talks and such, and our trips and conversations. I was also
jealous for a time how my older sisters had those long talks with
her when they were in college, and I never had that at that age.
My grandmother helped me mature into the man I am now, and I don't
regret anything I have ever done for her, through the aggravation,
anger, guilt, and other mixed emotions I have felt for so many
reasons. When I felt aggravated, I felt guilty afterwards. I have
learned to cope pretty well over the past few years expecially, I
guess because I am older and had more time to let things work in
my mind and heart.
My favorite line from people is when they say "I know how
you feel" when they have never had the responsibility of
taking care of a loved one. So many people at my grandmother's
nursing home talk, walk, sing, laugh on their own, but their
family never come to visit and appreciate it. I would love to
talk more about it, either IMs, emails, phone, whatever. What you
guys do is a special blessing with your chats and your mailers.
It takes special people to have the courage and strength that we
have. Sorry if this seemed so long and dragging, I just have
never really told my feelings all out on paper, except when I
spoke to Jamie before a few times. She is a really special lady
also, and told my mother she had an enormously special son :)
Once again, thanks for all you do, and helping others keep the
courage and strength for helping our loved ones live better and
continuing fulfilling lives.
I have worked in a nursing home for 20
years. I started when I was 19, so I have basically grown up
while there. I wrote in once before in defense of nursing homes,
and probably will always feel I need to respond to those who say
that "my mom (or dad) never wanted to go to a home" or
"I could never put mom or dad in one of those places."
You make my life sound like a terrible thing. Like a HOME or one
of THOSE places is a criminal thing. I am proud of the work I
have done. Proud of the moments of joy I have been able to bring
to those with dementia, and proud of the special people who do
that very difficult work. Not all nursing homes are bad places.
They can offer a wonderful extra to the person with alzheimers
and to their families.
I now come to the point where I need a break from the stress of
day to day caregiving to those with dementia and I feel like I'm
leaving my family. It is very important to recognize that
everyone needs a break from the demanding work of caring for
someone day after day. Even professionals. I know that I will go
back to hands on care eventually, I can't see myself in an office
with a computer forever.
What makes me smile is the family members who say that I don't
belong in an office, that I belong with my "family" and
that I'll be missed. Please , if you haven't already done so, go
visit a nursing home with an alzheimer's unit. Some of them are
VERY special places!!!!!!!! When you come to the point where you
need a break, take one, before everyone regrets it! I've seen
people who didn't take one do things to their loved ones that
they would NEVER do otherwise. Most nursing homes offer daily and/or
weekly respite care too. Check it out, and please open yourselves
to the nursing homes of today, we've come a long way in 20 years.
thank you for letting me vent one more time. Some day I would
like to see something positive on tv or in the papers about
nursing homes, but that's not news.
If I can encourage one person to visit a nursing home and see the
extraordinary things that we can do, I have done my heart a favor.
Just finished reading
latest Ribbon and really needed to be enlightened by the 10 A"s
especially ARGUING IS USELESS. After two years I am still
trying to change what cannot be changed by arguing with my
husband. I now realize that it us useless to argue with a person
that has dementia. He spends more time saying he is sorry and he
don't even know what he is sorry for. Believe me I am going to
try very hard to accept what cannot be changed. I feel so
frustrated most of the time and it rubs off on him causing
anxiety. Only once when I slapped him hard on his shoulder, he
grabbed my hair and pulled it, lost his balance and fell with me
landing on top of him.
I have bruises from the fall that he noticed and asked how I got
them, when I told him he had no recollection of the incident. He
has been calling the security number and telling them that he
doesn't know where I am and he doesn't know whose home he is in.
I explain to them that he has dementia but I am not always aware
that he dials. I have disconnected the kitchen phone and turned
off all the ringers but I have a message machine to take incoming
calls. I don't know what else I can do to stop him from using the
phone. The neurologist said I need to get away but that is not
possible as I wouldn't wish him on anyone. I sometimes wonder how
much longer I can go on without exploding. When we go out in the
car he constantly tells me I turned the wrong way, or how do we
get home, never stops giving orders. I just had to get this off
my mind and I am amazed that there are not more complaints like I
have, Thanks for listening. NO900
Thank you Karen for sending
me the Ribbon, I took some time to read some of the
past articles and one in particular hit home, it was about
caregiving and all that we
feel. As I read it I was amazed how closely it discribed all the
feelings that I thought
were unique to me alone. My husband was diagnosed with Alzheimer's
in 1991, he was
57 and he is now helpless, he can still walk but has to be fed,
dressed and helped with
everything. He can no longer speak except for a few words (mostly
swear words) and
doesn't see well either. I am at present starting to look for
nursing home care, have
been doing everything myself until a couple of months ago I
started hiring "in home
care" a couple of times a week.
I just started also to visit the chat room and have mostly just
watched as it is all new
to me. I would like to continue as I'm sure I can learn from the
others and maybe at
some point help someone else. This disease is so devastating,we
all need to lean on
Thanks again, Carol
i am sending a reply to the lady that felt the need to attack me.
everyday with my mom is a struggle......... i in no way implied
that people who choose nursing homes were wrong. i was simply
asking for help/sympathy maybe.......becuase i know what needs to
be done but can't bring myself to do it. am i the bad person?? i
didn't think so.
if you have the ladies email address perhaps you can forward it
on to her.
yes i am upset and sad that someone would say those things as if
i had no feelings for what everyone is going thru.
hope i haven't bothered you,
never would i put to shame anyone that chooses the nursing home
for their parent. if my letter came across that way then you
certainly took it wrong. everyone involved in my life tells me
what you wrote. i hear it all the time.
i don't think i deserved to be spoken to like that. everyday of
my life is a struggle and you don't know me. i was simply stating
that i was having a hard time making the decision.
thanks, laura Currby4
From Piano kf
Hi Karen and Jamie---I want
to take the time to THANK-YOU for all the support and love that
you guys have given me over the past few years. My mom passed
away in April, and it is just too painful to read the newsletters.
Will you please take me off the list, for now. I appreciated all
the info that you haved shared with me, and I will continue to
pray for all the caregivers in "cyberspace"---God Bless
You, love, karen
I don't make it into the chats very often anymore. Mom keeps me
busy in the evening. She gets pretty lonely when I'm not sitting
next to her watching tv and keeps pacing back and forth into the
computer room until I join her. We keep going along. She still
goes to the adult day care while I work. I usually have some time
either early in the morning or before she comes home to check
email and send off jokes and things. If any of you wish to be
taken off my mailing list, please don't hesitate to let me know.
I understand how email overload can be amd do not wish to offend
But please keep your mail coming to me...I enjoy the jokes and
Hugs and Peace,
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