following are true stories sent in by today's caregivers:
is 84 years old and in relatively good health. (Amen) However, her
husband is 82 and not in good health. He has a memory loss problem
(Alzheimer's ? Dementia?) - not known at present even after evaluations.
He has a very nasty streak, becomes verbally abusive and doesn't
cooperate. He won't allow my Mom to have anyone in to help even though
she should as she has undergone breast surgery for cancer. He falls
often and refuses to use a walker or cane for better balance. The
result is that he is falling more frequently and his injuries are
getting more serious.
My sister lives in Texas and I in Lawrenceville - Mom is in Lawrenceville too.
We have spoken to their doctor and he suggested trying to get him to a nursing
home. The doctor didn't feel assisted living was feasible as he didn't think
he was capable of caring for himself.
Mom is passive and in fear of money as it is not plentiful.
My sister and I have made many suggestions. We are the emotional support and
both work more than full time jobs. The physical help is limited in that respect.
What does one do in this situation to protect Mom from exhaustion and total
burnout. Unfortunately, she is being pulled down with him.
Please offer some advice if possible.
is not about an aging parent, but an aging husband. When we married,
I was 38 and he was 61. We have shared many good years together with
our families and friends. We are now 54 and 77. At age 77, my husband
is still involved in the profession from which he retired and loves
what he does. He enjoys exercising at a wellness center, singing
with a local choral group, and sits on the board of a local organization.
He has a few chronic illnesses but nothing life threatening. In the past 2
years he has slowed down considerably and I am now doing 85% of all that needs
to done with our home, finances, etc. I am working at a full time job, then
come home to a husband who has become very dependent and irresponsible.
I am physically and emotionally exhausted. My daughter told me today that I
am not happy and need to do something about it. H is very in tune with his
body and when anything is not perfect, he worries and sets limitations for
himself. He frequently apologizes for not doing enough to help me.
His mood and level of energy fluctuate hour by hour, day by day, depending
on the "symptom" he has last experienced. I never know if I am coming
home to a "sick" man or a "well" man.
I don't know if there is anything that CAPS can do to help me. But if some
one could offer some advice it would be most helpful.
happens to the care giver when she has given up relationships and
jobs to take care of her parents after she is divorced? And now both
parents gone, no money, and no job. Mother was a 24/7 job with no
pay since January 8 2003. Now mother is gone, the caregiver has been
all alone through this and finds herself appointed administrator.
No home. No where to go and not even a dollar to her name. Is there
life after all of this? Is there life after death for one that gives
up everything to honor thy father and mother? She passed August 12
any help out there? There are no programs in Kentucky for caregivers.
blessed to still have a Mother whom I love with all my heart. She
is 93 years young. However, as much as I love and do for her what
I can (over and above the call of duty), it is never enough. I always
see that she is clean, fed and dry. I am tired! Mom's care is more
than a handful. I live in Opelousas, Louisiana. Respite care is either
not known, not available or unheard of. CAN YOU HELP ME? If I could
just get away with my husband for two weeks every three or four months,
that would certainly help us all.
my father died in August of 2001, I was left the responsibility of
caring for my mom who had previously had a stroke two years before.
my dad's death and subsequent "reading of the will" left
an unfixable rift between my siblings and myself and mother. I absolutely
had no qualms or doubt that I would care for her. She is my world
and I love her more than life itself. We permanently moved from NY
to NJ last year and it's so far been quite a struggle financially
for me to just pay the bills, the mortgage, the taxes, etc. This
struggle combined with working, cooking, cleaning, and bathing her
and pretty much giving my life up are just now taking its toll on
years old, I don't get to go out with friends anymore, I definitely
don't have an opportunity to meet or even date a guy. I've lately
feel frustrated and like I'm never going to get the chance to get
married, have children and a family of my own. But in some way I
feel like making this sacrifice is okay because she is my mom after
all and she sacrificed more for me I'm sure. But lately I've been
feeling angry and I've yelled at her a few times like it's her fault,
when I know darn well that it's not. I made her cry the other day
and I apologized profusely,hugged her and cried with her. I realized
at that moment that I needed help, that I need to join some sort
of support group. I'm looking into that now but it's hard because
this area is new to me. Know this: our love for each other is stronger
than anything and our bond even greater and as long as we have those
2 elements we'll be okay!
mother is dying of cancer. She lives on the east coast and we are
on the west coast. She has been with a paid caregiver for almost
a year, in her own condo. She has held on to her money all her life
so when she got old she wouldn't need me or my brother to take care
of her. (This was said to us in sarcasm, many, many times.)
She has badmouthed my dad and brother who passed away years ago, and just about
everyone I know or care about. She has always been nasty, demanding, critical,
manipulating, petty, and jealous of other people's good fortune, friends, happy
True, she has had her share of family deaths and stresses but haven't we all.
She has called me garbage, among other things, although I have tried to please
her and make her happy all my life. I am her sole immediate survivor.
After seeing therapists/shrinks, I no longer have the major guilt of not going
to see her before she "passes." She is no longer coherent and is
in hospice care at her home.
What infuriates me is the neighbors keep asking the aide, "Where's the
daughter, why doesn't she come down to be with her mother at this time?" They
have no idea of how toxic mom is and how she hurt me and other family members
including her 7 grandchildren with whom she has no contact except for one.
We get daily calls from the nurse/aide or we call to see how mom doing. I feel
I have done enough. When dad died, she asked, "What do you do for me that
any stranger couldn't do?" When my brother died she said, "Now I
have no one."
At this point I can't deal with seeing her deteriorate into such a pitiful
state after knowing how she has been all her life. She doesn't even seem to
call for God to forgive or help her. We have had the chaplain and others come
in to pray for her but she is unaware or doesn't want to deal with that.
Does anyone out there have a mother like mine? I truly think she is rare. I
heard this from aides and nurses who have had to deal with her over the years
as well as her own doctors who were glad to be relieved of caring for her.
these stories brought tears to my eyes, as I too am going through
what most on this site are as well. I'm 50, an only child, with a
Mom, 75, who has been battling breast cancer for quite some time.
God Bless her, she has been the primary caregiver to my Dad who is
83 suffering from a stroke and emphysema and is on oxygen full time.
I visit them twice a week to help with some chores. Today when I
saw them I was so upset, as it looks like the cancer has taken hold
of my Mom.
both of them we've been in and out of hospitals and doctor visits
so many times I can't even count them. When Mom goes in the hospital,
I go live with Dad, take care of him between hospital visits. Naturally
I have to take time off from work to do it. But this I don't mind
scared and upset now, as it looks like it's going to hit the fan
really soon. If anything happens to Mom, I simply don't know where
to turn to further help Dad. He requires a lot of care, but God Bless
him, he has all of his faculties. I'm faced with what so many of
you are. That is, do I move Dad in with me or do I face the guilt
of finding a nursing care facility? I feel with the loss of Mom and
then putting him in a nursing care facility will be too much for
him to bear. I fear and hurt over the further suffering that Mom
has to go through ... I fear tomorrow.
you all. You are all wonderful people, that care, and you are not
alone. God bless each and every one of you and thank you for sharing
to know where to begin. My mother just turned 91 and has been living
on her own. She recently took a fall and had to be rushed to the
hospital and received several stitches in her head. Since then she
has been having episodes of confusion.
in another state, about 65 miles from her. I am her only daughter
and we have been very close through all my life. She started calling
me very often with the smallest of problems, which I could not just
pick up and take care of, considering the distance. I had been visiting
her once a week, but she had started becoming more and more agitated.
her into a nursing home has been presenting a problem. Too poor and
not rich enough. Her doctor suggested I come down and get her admitted
to the hospital, which, if accomplished, would make getting into
a nursing home easier.
has become very angry with me as she sits in her hospital room, but
I feel I cannot take care of her and she cannot be alone. She has
fallen in the middle of the night five times in the past month. They
had to break down her door to get to her. (She has a life alert button.)
The whole episode has been one overwhelming, upsetting and sad problem.
I have a lot of guilt and am very sad most of the time.
if she gets into the nursing home and adjusts, things will settle
down. I fervently hope for this to happen. Any encouraging words
of wisdom from someone out there would be appreciated. (I could go
on and on about upsetting things that have happened recently, but
I think anyone whose been in my shoes knows what I am feeling: guilt,
sadness and helpless.
of my parents are living in their own home, but finding it increasingly
difficult to pre form everyday tasks. My brothers and I help out
as much as we can to make their lives easier and they have a healthcare
worker who comes in Monday through Friday from 9 a.m. to 1 p.m.
I work full time and commute an hour each way and I am finding it hard to keep
up with my own life's demands.
It is so hard to watch as both my parents struggle daily to keep their spirits
up. I have tears in my eyes as I write this, because as hard as it is for me,
I cannot imagine what they must be going through.
My father is 82, diabetic and restricted in movement due to bad circulation.
He is confined to a wheel chair most of the time.
My mother is suffering from osteoporosis, rheumatoid arthritis and the list
goes on, including some form of old age dementia. She is 85.
That's my story. It felt good writing. I have been depressed and needed to
release my feelings.
Best of luck to all.
taking care of my 83-year-old father in February 2002. When he first
came to me he had no trouble walking on his own. He would even get
in the kitchen and cook and wash dishes. He has emphysema and also
has prostate problems. He has been hospitalized twice. It is sometimes
hard for him just to walk to the bathroom and back because he gets
working when he first came but went out on disability because of
a plantar tear on the bottom of my foot and had to have surgery.
When I went back to work, I found I was terminated and have been
out of work ever since.
I need is to find some kind of financial help. Right now I am receiving
unemployment and that is not going to last long. I also do not want
to leave my father alone in the house by himself. He has gotten used
to me being there and worries if I am gone too long to the store
or running errands. Right now he is with an abdominal catheter because
his prostate is swollen to where his bladder will not empty like
complain because he isn't any trouble. He thinks he is and because
of that he will not tell me much of what is wrong with him. He suffers
in silence. I have to let him know that he has to let me know whenever
he is in pain or when he needs to be cleaned up more than usual.
I am always there for him. But what I need right, now since I cannot
go out to work, is some financial help. I have two sisters and one
brother, but they can't help me right now because things are tight.
who is doing the same as me let me know how you are making it and
what resources you used. It would be a load off if I could get some
form of help. Most of it I put in God's hands. He holds my hand when
I need it, and that,s quite a lot these days.
am originally from Connecticut. I now live in California, and three
years ago my mother moved out here after breaking her hip. I live
in a town house, and she owns the one across the walk.
have two brothers who live back there, one with Alzheimer,s and the
other the apple of my mother's eye. Growing up, I never felt loved
by my mother. She always favored my brothers, but, I was dearly loved
by my Dad, so this made up for that.
got divorced 7 years ago, and when Mom moved out here my children
were 20 and 23 years old. As they had never lived close to a grandparent,
they were pretty excited. This was the background. Six months after
moving out here, Mom became an invalid. She needs help getting out
of bed, into bed, all of her meals and bathing. She refuses to let
me alter the time, so I live under her control 24/7. I have had two
vacations in 2 1/2 years. One of them, 18 months ago, my cousin came
out to stay with her and the other for five days last week. I went
east for my nephew's wedding.
mother was mean to me before I left, and horrible once I got back.
She made rules for the person caring for her, and then got mad when
the person followed her. She is mean, nasty, and I am going crazy.
My brother and sister-in law are no support because they are so wrapped
up in her money, they don't care if I kill myself. "It will
cost money to put her in a home." I am going crazy. I could
take care of her physical needs, but the emotional blackmail of her
toxic personality is killing me.
name is Kelle. I live with my grandfather who is 91 and has Alzheimer's.
For the last 5 years I have taken care of him 24/7. I'm now 38. I
get paid a very small amount, therefore I don't have insurance for
the doctor and I can't afford my medicines. I'm not eligible for
medicaid and my grandfather is only able to receive 4 hours a week
in in home services. Is there any place I can turn for extra compensation,wages,etc?
The cost of living has increased but my salary of 400 monthly has
stayed the same. Any help as where to find financial would be helpful.
June 1999 I was laid off from my job of 23 years and decided to rent
my townhouse and move closer to my aging parents to help out. The
problems first started with my tenants thought I was going to tolerate
bad checks, late rent and finally no rent and continue to live in
my home. I stressed to them that I was unemployed and needed the
rent on time so I could pay the mortgage. After going through the
legal system for eviction, I found the law was on their side since
they were filing for bankruptcy and I could not evict them. There
I was $3,000 due me for back rent and tenants who the law said could
continue to live in my house. Finally one day the tenants moved out
once they found out they could not file full bankruptcy and they
would have to pay me the back rent. It took me months to track them
down and have wages garnished. In January 2000 I finally found a
job and once I started the job I totally and completely hated it.
At that time, my mother could be left alone. Then in August she was experiencing
severe abdominal pain. I took her to the ER but they said nothing showed up
on any of the tests but would keep her for observation. She was delirious with
pain and finally a nurse called in another physician who ordered more tests
and found Mom's intestines were getting ready to rupture. She was rushed into
surgery and spent weeks in the hospital. From this point on Mom could not be
left alone. A few months later Mom took a fall and broke four ribs and fractured
her hip. She was put in a nursing home for rehab but hated it there and would
have the nurse call me almost daily to come and get her. I have three brothers
and one sister. At this time, one of my sisters-in-law had retired so she was
staying a lot with Mom during the day while I was at work. One brother was
taking care of most of the outside yard work as he had for many years and then
another brother retired and he stayed a lot with Mom during the day.
Mom gets angry if I need to go to the store and pouts if I go anywhere. She
has been known to not take her meds and tell me she did just to get back at
me for taking an hour to grocery shop. My stress level has maxed and my physician
sent me to a massage therapist and chiropractor to help with the stress. It
does help but I just don't know how much longer I can take having NO time for
me and I think having work being a sanctuary is ridiculous, but that is the
only place I can really have to myself.
mother is 82 years old. She had cancer of the kidney 12 years ago.
The doctors removed her kidney and she recovered 100 percent. Well,
almost. She now has problems with her bladder and she can't control
herself when she urinates. It was a real struggle to get her to wear
depends. She does now, but she doesn't want to change them every
time she urinates because they are expensive. The results are she
wets the bed, the couch. etc. She walks with a walker so she can't
carry a plate, a glass, etc. I have to do everything now. I feed
her, dress her,bathe her and try to keep her busy. My mother also
has been diagnosed with manic-depression. The woman I knew to be
so sharp now can't remember to take her medicine.
am 41 years old and I am an only daughter. My brothers do not help
at all. I am somewhat overwhelmed. I am lonely and need help.
story starts in 1982 when my Mother became a widow suddenly and
did not drive. As an only child, I became her sole source of transportation
and advice. Since she never handled family finances, this also
became my job. She sold her home in 1989 when she became more fragile
and built an apartment attached to our home. In 1996 she fell and
broke her hip and has since suffered from severe osteoporosis,
arthritis, a loosening of the hip prosthesis due to the osteoporosis,
glaucoma, severe hearing loss and lately she has started having
signs of dementia and suffers from chronic constipation. She cannot/will
not eat or drink well since she says she cannot chew even though
she has dentures and won't drink more than 3 glasses of fluids
a day. She is down to 84 pounds from 135 and is now 100 1/2 years
husband is 83 and I am 73 and we are wondering when our "Golden
Years" will start, after 20-plus years of caregiving. We have
an aide come in once a week for our day off. Since Mother and I
never got along while she was well, it is a struggle for me both
physically and emotionally.
tells me that I am a "saint." Baloney!
am 44, single, female. Seven months ago, I gave up my job in NYC
and moved in with my parents (mother, father and aunt) in Orlando,
FL in order to care for them. My mother is in the early stages of
Alzheimer's, my father is losing his hearing and sight (although
he won't admit it), and my aunt suffers from diabetes and high blood
pressure. In addition, I have an uncle who lives nearby who has had
two strokes and has severely limited mobility.
In the meantime, I have yet to secure permanent employment. I feel overwhelmed,
useless and stuck. I haven't reached my wit's end yet, however, I'm quickly
approaching that point. I would just like to be put in touch with a support
group in this area so that I can better cope with the situation.
aging mother-in-law moved in with my husband, two kids and me three
years ago. Her health was declining, but not failing. She was becoming
more forgetful, her friends were nervous about driving with her,
she didn't t feel that she was getting very good medical care, and
we were just plain concerned about how we would help someone 2,000
miles away should something happen.
We have adequate space in our house, so she took over the lower level and led
an independent life for the most part. She joined us for dinner most nights
unless she had other plans. She made friends quickly and hooked up with the
local senior center and church.
We quickly discovered that her health was not as robust as she had led us to
believe. She was diagnosed with high blood pressure, congestive heart failure,
and other stuff almost right away, stuff her previous doctors had all missed.
We learned that she had had a stroke too, which had damaged the parts of her
brain involved in perception vital to driving. Within a year she had a pacemaker
and had recovered pretty well. Then one year ago she took the big fall, the
one we all dread. She landed on our garage floor and fractured a bunch of vertebrae
and ended up in the hospital and then in a nursing home for rehab. She spent
most of last summer there and that was my initiation to the world of caregiving.
My husband and I became vitally involved in her care. We visited her almost
every day. We got to know all of her caregivers and they, us. We talked honestly
about our concerns and they helped us realize what changes we would have to
make at home. Once she came home it was months before she was able to get out
again to church or to join her friends at the senior lunches.
Then a few months ago, she fell again. Only she insisted that everything was
fine. Two weeks went by and we realized that her pain level was increasing
at an awful rate. Doctors did their tests and she came home with us and cried
because the pain was so bad. She was taking lots of long-acting pain meds with
lots of pills for break-through pain but nothing was working. Pain was a 15
on a scale of 0 to 10. We finally brought her to the ER and had the luck to
be admitted to a wing next to the cancer wing with the pain management specialists
available to help her. Once that was under control she was able to come home
with us. We were confident that she would recover completely and be back to
her old routine in no time at all.
And that is when it all started going downhill. I wonder if the human body
just decides that it has had enough. Within the last month she has lost 20
pounds. She has become more frail and tipsy. She sleeps so much and won t drink
much water. Her doctor recommended that we cancel home care and call in Hospice
and they have just gotten started.
It s hard having a whole new group of people getting to know her and to have
to deal with schedules again. It s really hard watching this women who is so
strong and independent sliding downhill. It s hard to know what to say. Does
she know that she is dying? Is it okay to talk with her about it? Am I the
first person to worry that my bringing this up will make her feel like she
is a burden and want her to die? I sometimes feel very helpless and confused.
I don t know if it is my faith or something else, but I know that since I have
her best intentions at heart that I probably can t do a whole lot wrong. In
the meantime, I'll just muddle through.
And here s what I have learned ..
What's gone wrong? Well, for starters, my husband and I don t always agree
on her care. This is a difficult one since I am the primary caregiver and she
is his mother! We try to talk it through, but that doesn't t always work.
It is also hard to care for someone who still thinks of herself as an
independent person. Explaining to someone with no short-term memory and very
little long-term memory that they need to drink water or wear their oxygen
or should let others do laundry and make beds is quite difficult, especially
after the 100th time!
I also get upset when she is angry with me for not telling her something. I
try to write things down for her to refer to later, but that gets lost. My
feelings get hurt easily now. Tears are always welling up inside. I feel like
I do so much, and she has no right to be angry with me because of her failing
What have I learned? Well one important thing is to remember that she does
not ask me the same question five times in a 10-minute period just because
she wants to annoy me! I try to answer each time as if it were the first time
she asked. This was the hardest lesson of all. Up until two months ago, I was
very impatient if she did not remember. I d say things like: Don t you remember,
we talked about this yesterday and not always in the kindest of tones.
Another thing is to remain vitally involved in her care. When she first
moved here, she didn't t always remember what the doctor had said. Once I or
my husband began going with her, we understood better what needed to be done
and why. We were able to ask the questions that she might not think of. And
we were able to ensure that she did what the doctors had suggested.
Another thing we have done is to keep a living document that reflects her current
condition. It includes her current medications, problems she has had with discontinued
medications, allergies, etc. It also includes her medical history so that any
new doctors have an idea of why she is where she is, what s been tried in the
I've learned to look at unanticipated/unwelcome changes as blessings. For example,
when my husband was laid off two years ago we were quite anxious. We've since
realized the gift we've been given in being able to better take care of his
mom. I would have been burned out long ago if we weren't t able to share her
care. When I am tired, he is there. When he s tired, I take over. Sure it s
stressful without his income, but she is able to float the boat of our combined
household and we re able to provide her with high-quality care.
I've also learned not to make any changes on a Friday or before a holiday.
It takes too long for bureaucracy to get moving on a weekend and care tends
to be substandard until the regular staff comes in on Monday. (We've made this
mistake twice never again!)
Probably the most important thing is to know when to ask for help. There are
support services out there and they usually are not that hard to find. Ask
for help. Ask for help. Ask for help!!! At first I felt guilty about it since
I could really do everything required. But I do need time to myself. I do need
time with my husband and kids. And I do need time to take care of the rest
of household. My husband and I go out on a date every Friday night, whether
we need it or not, and that does us a world of good.
Sorry this is such a long posting, but I felt like I needed to not only
share my story but also what I've learned.
am a 45-year-old married woman with a 4-year-old son. My caregiving
situation involves the emotional roller coaster I experience while
trying to support my mom and dad. My mom is often in the hospital
with either heart or kidney problems. This last year she started
dialysis and got a defibrillator.
recently she returned from the hospital with heart complications
related to the device. She wound up having cardiac arrest, but it
wasn't God's will for her to leave right now. Thankfully she is in
a recovery state (physically), but emotionally she's having a lot
of anxiety and fear about another "event" happening. There
is truth to that but like any of us, we can't predict the future.
As a family we feel stressed out about the "real" episodes
as well as trying to help her not anticipate the future. Any suggestions
for helping her practically deal with the future? Any suggestions
for how we can support her without it consuming our emotional lives?
am a 40-year-old male taking care of my 73-year-old father. He has
had 2 strokes and due to the second one he can no longer eat(orally).
He had a tube inserted directly to his stomach and that is how we
feed him. Luckily i have a sister that helps me with him in the summer
months. (she is a physical education coach). But when school starts
next month,she will have to return to work. After reading some of
the other stories here, I feel kind of blessed that I kind of have
it easy. I am happy that I found this web site to know that I am
not alone. Taking care of an elderly person is a hard, thankless
job, but we all share the extreme love for our parent(s). That we
will do what we have
to do to care for them. Thanks for reading my story. Bless you all.
mother is in an assisted living facility due to past crises and due
to the fact that she was not caring for herself, not seeing doctors,
and shutting people out.
every time I call her (I live out-of-state) she talks about wanting
to "go home" and not understanding why she can't. She has
been diagnosed with bi-polar disorder, has many medical problems,
and takes a lot of medications.
I am the one she blames for her current situation. We have decent visits, but
phone conversations are usually not good at all. I want to talk to someone
who is going through something similar, because I am very stressed about the
role I am playing in my mom's life.
She is 81.