following are true stories sent in by today's caregivers:
am "just the granddaughter." My grandparents raised me
and my sister/brother. My parents, separated when we were young
and did their thing. Right now they are in their 80s and, for the
most part, healthy. My grandmother has 3rd stage Alzheimer's They
are in a skilled nursing facility. My mom signed them away as far
as I am concerned. We have not spoken in a year; I have gone to
court, and of course, they told me that I have no rights. I realize
today that they are getting their daily care needs met. But I feel
so very frustrated and I know that my grandfather is hurt, because
my mom is their only child and she never visits and naturally he
gave her power of attorney over their assets. I go visit and make
sure they have the extras the need. I participate in my grandmother's
baths and do her hair. I try not to beat myself up. Needless to
say, I am not speaking to my mom. I know I will need to. I just
don't understand her and how she could do this. Her parents were
so very good to her all her life.
am 34 years old; about 6 years ago my husband fell and injured
his back, which left him with a permanent injury to his spine and
unable to work. We have two wonderful boys. Two weeks after my
husband's surgery I was called by my mother; she and my dad were
in a small car accident. My dad forgot how to drive. He was diagnosed
three days later with the beginning stages of Alzheimer's. At the
time I was only 28 years old. My husband disabled and my dad sick.
made a decision that would change all of our lives and change who
I am to this day. I have emanated to keep my dad home with us.
He is in his last stages of Alzheimer's. It's a very sad thing
to watch every day. My dad was a military vet, retired from the
army after 35 years, worked on the railroad, a very independent
dad. Now he doesn't know who we are or how to do anything anymore,
even talk. My boys adapted very well with education and counseling.
My husband takes the morning shift, 4 am to 1 pm. I work 40 hours
a week. Then I come home and take care of mom and dad.
mom was diagnosed with a brain tumor at the age of 72 in February
2001. She immediately opted for surgery, had a great doctor and
everything went according to the text books (easy removal without
too much trauma), but it was found to be cancerous. Up to this
point, she and Dad were vital, active people always on the run.
a period of treatments, mom was doing really well, had made the
trip from Florida to Ohio (where I live) several times, was enjoying
her life; her hair had grown back - and then she was struck down
again. She required more brain surgery. Due to some really horrendous
treatment at a rehab center, she never fully recovered. She passed
away on Christmas morning 2001.
am an only child, with a daughter and a grandson. Both my husband
and I work full time. I have a one hour commute to my job. My mom's
mother is still alive and kicking at 96! There are care issues
abounding here; my grandma is in a nursing home and hardly any
of the rest of the family visits her. My dad is trying to move
up from Florida, refusing to give up ANY of his stuff. He's diabetic
and has not been taking proper care of himself due to taking care
of my mom, and stress and the grief of losing her. When I ask him
if he is eating properly, he gives me some lame answer about having
packed all of his pans. He doesn't have any milk, and on and on.
My dad has always been very controlling and it hasn't really stopped.
He stayed with us for 10 weeks trying to get his new home ready
and it nearly drove my husband and me crazy. I truly love my parents
- we have always had a wonderful relationship, but not wonderful
enough for him to live in our house. I turn into the child again
and he is in charge of TV, social events, etc.
husband and I virtually did nothing but live for him when he was
here. He has a dog (we are thankful for that, but) that does not
get along with our dog (who happens to be the princess) and they
fight all of the time. He and mom had purchased a home near us
shortly before her relapse and we were just waiting for her release
from care to move them up here, so he has a brand new place to
live where memories of mom won't haunt him as they do at the old
house. We are hoping against the odds that he will regain his composure
when he is settled there so that we can all live normal lives.
To make a point about how controlling he is, he had a diabetic
episode at our house where his sugar level was only 26 and three
adults (my adult daughter was also there) were having one hard
time deciding if we should call an ambulance because we didn't
want to make Dad mad. He is also of the frame of mind that if you
don't think a suggestion of his is absolutely the best....he gets
really upset and basically tells us not to bother with him anyway.
Don't get me wrong, he is caring and loves us very much, but we
must do what he says or he gets obnoxious. So I have a tremendous
load of guilt and fear (fear that I will have to move him somewhere
against his will). I am just kind of lost, scared and guilt-ridden.
We don't mind helping him get settled, cooking meals for him to
have at his convenience (if we can get him to use the microwave
- he also insists that he can't learn anything). So if anyone has
any suggestions or stories to share, feel free to e-mail me. Thanks
for letting me vent.
85-year-old widowed mother has finally decided to move from her lifelong
home 6 1/2 hours way from me to my area this August. She broke her
shoulder last year and it was a family crisis because three out-of-state
siblings had to take care of an emergent situation. She healed remarkably
well after eight weeks of complete immobilization and physical therapy,
but it took the wind from her sails, depressed her to have to be
bathed by her daughters, etc.
anyone read an amazing book called Another Country by Mary Pipher
recommended to me by a psychiarist? It addresses the emotional needs
of the elderly and touches on a lot of topics. What so many of you
are living through is so heroic. I have no doubt you will be rewarded
in making the Fourth Commandment part of your daily struggle. I think
my role as a care giver is just starting. I am in my mid 40s and
have no kids, but a wonderful husband.
father passed away two years ago. At that time my mother had never
lived alone in her life. My brother and sister and I wanted her to
know that she wouldn't have to live alone if didn't want to. Two
months after my father passed away my mother started saying things
like I can't live alone, I don't want to live alone, I am afraid
to be alone. At that time I was the only one without a family at
home. My children had all grown and were on their own. And I was
divorced. So I moved in with my mother.
were okay for about six months. Then my brother, sister and I started
noticing that my mother was shaking and shuffling her feet. She kept
saying there was nothing wrong and would not see a doctor. I was
having problems and had an appointment to see a neurologist. So at
that time I told my mother that the doctor wanted to see her and
talk to her about our history. I now see this neurologist every three
that time the doctor told my mother that she felt there was something
wrong. After testing it was determined that my mother has Parkinson's.
Medication seems to be helping to some extent. But her recent memory
has become a major problem. It seems that when we talk to her and
tell her things the next day she doesn't remember. And starts fighting
and arguing with us. Every time we say anything to her she says that
is not what we told her. It is becoming a major problem. My brother
does what he can to help. My sister lives out of state. And with
mom living with me, I receive the brunt of her anger.
am becoming depressed and not sure what to do about this. It seems
now that nothing I do is right and everything I say is a lie. I do
have health problems of my own, which are not helping. The memory
problem seems to be getting more and more pronounced. She also has
a couple of other problems that she refuses to see as problems and
won't see a doctor. My sister is a nurse, so I keep in close contact
with her. But I see no way to force my mom to see a doctor. I was
hoping that others may have some suggestions or answers that I might
try to make this situation a little easier. Right now I think there
may be something else medically wrong with my mom but don't know
what to do about it. And other relatives have seen these problems
and made suggestions to her but she still refuses to see a doctor.
am caring for my husband who is 72 and has mid stage Alzheimer's.
I am 65, very healthy (I jog two miles a day) and we had a very active
life together. This disease has hit us like a ton of bricks. I miss
my old life and the husband I shared it with. All my time with my
husband now consists of "doing things" for him and I feel
smothered. I am sure my story is not unique at all but it seems as
if it is to me. I guess I just miss my husband and know that he will
never be back again.
am 36 years old, married, with a 7-year-old girl. We live on a farm
with my mother, who is 81. She has chronic leukemia, congestive heart
failure, high blood pressure, etc. She is currently recovering from
pneumonia, which has left her very weak and in need of bladder catherization
several times a day. My husband and daughter are very supportive,
but my older brother and his family think that all they need to contribute
is her supper a few nights a week.
main problem is that everything is in her name on our farm, and because
of increasing paranoia, she refuses to have anything taken out of
her name. (I have lived her since my father's death 18 years ago
when I was 18, we have never been seperated.)
I worry that if she should become beyond my ability to care for,
she might end up in a rest home, which would take my home. If you
have any experience in legal matters of this sort, please contact
me. Any advice would be appreciated.
would also like to talk to someone who is experiencing similar difficulties
with caring for an elderly parent. I need the support.
mom is 85 years old. She has been in a nursing home for the last
five years with Parkinson's Disease. I was a "menopause baby" and
am only 41 years old. She is the most precious mother a person could
ask for. She developed pneumonia a little over a week ago and doesn't
seem to be recovering very well. I'm writing this knowing that today
is our last Mother's Day. I want to be with her every moment, but
with a husband and three children I can't. I go the the nursing home
every day at noon to feed her lunch. My older sister (who is 65)
goes at 5 to feed her dinner. Momma and I have always been very close
because my Dad died when I was 4. I feel like I'm living a horrible
dream. I can't seem to concentrate on anything. I even have to fake
it when my children come home from school to share their accomplishments
with me. I feel like a light is going out in my soul.
have been my mom-in-law's caregiver for some time now. I take her
to doctor appointments, of which there are many, to making sure she
follows her diet. She is a non-compliant diabetic, she is also non-compliant
with taking her meds. Her diagnosis is COPD, CHF, diabetes, pulmonary
hypertension, depression, osteoarthritis, macula degeneration of
her eyes, glaucoma, incontinence, and sleep apnea. She has a pacemaker,
a stent in her heart, has had back, knee and, ankle surgery; she
has had a total hysterectomy, and gallbladder surgery. SOOOO.....as
you can tell, a bundle of physical and mental problems.
at one time saw as many as six doctors at one time. It was too much.
I asked her primary physician what we should do about this. He could
not believe it. He said he would take over all her care and only
send her to a specialist if he felt the need to. My mom-in-law and
I have had allot of fun together, but her physical health now has
her in a nursing home. They call here every day wanting to know something.
I go to see her every day. Her son, my husband, and I, and our children
are about the only family contact she has. My brother-in-law, her
other son, does not go to see her. We still don't know why. We even
had a birthday party for her at the nursing home and he was not
there; his family was but not he himself. He conveniently said he had to work.
I even asked him when a good time would be to have this party and we went with
what he suggested.
she has none if any contact with her oldest son. I think this has
also added to her depression. I just received a phone call from the
nursing home and they want her to wear briefs instead of a pad due
to her increased incontinence. Apparently she tells them "no" she
does not want to wear them. I am not sure why. Well, I guess my husband
and I are going to go to the nursing home now, so I will end my story
here with: Can anyone give me some advice I can use. Most advice
I get is "It will be all right in the end, just give her some
time to adjust." Or "you know what nursing homes are like;
you put your loved ones there to die." I think she is on too
many meds, but no one seems to want to reduce them; 28 different
meds at last count. Please help us. We did not place her in the nursing
home; her health did. The doctors recommended it. How do we let go
of the guilt.
for reading my letter.
am 59, a breast cancer survivor, suffer from fibromyalgia, sleep
apnea, gerd, high blood pressure, depression, osteoporosis and arthritis.
take care of my husband Rufus. He was diagnosed with AD in 2/99.
He has advanced AD and depends on me for all of his care. He is incontinent
and cannot do the simplest things for himself. I care for him 24/7
with no relief. I have no health insurance because I am too young
for medicare and not poor enough for medicaid. My medications are
very expensive. I feel that the State of Ohio should follow the example
of California and provide a salary for caregivers.
am a nurse (retired) and am the caregiver for my husband (age 54),
recently diagnosed with Alzheimer's Disease. He is a Vietnam Veteran
and has been working as a physical therapist for the past 20 years.
He now is on the receiving end of care and this is quite difficult
for him to receive rather than give all his life. He keeps telling
me how lucky he is to have such a caring and loving wife . I am happy
that I am able to do whatever it takes to keep him as happy as he
possibly can be.
know things will get alot more difficult and trying for the both
of us; but we will work through this. We have such a special and
precious love that few couples ever hope to find. We have been truly
the past year and a half I have had to deal with my mom starting
dialysis and going into renal failure. To add to her problems, she
also has congestive heart failure. I tried to keep working, but due
to doctors appointments and dialysis 3 times a week I have had to
shut down my business. My brothers and sister believe that it is
not their responsibility. They believe because I am single that I
have no life and I don't need an outside life. Now my father has
had a massive stroke and I have them both to deal with and my savings
are gone and I don't know what I am going to do. My bills keep coming
in and I can't work because I am so drained. I need help but I keep
running into brick walls. If you have any idea how I can solve this
problem, I sure could use the help. I live in a small country town
in Alabama. Please help, any ideas are welcome.
mom, now 81, came to live with me seven years ago because she was
not eating well and was exercising poor judgment. After some time
she was diagnosed as having Alzheimer's Disease and Dementia (AD).
Over the seven years, she continued to deteriorate, and now she is
no longer able to function on her own at any level. She is incontinent;
has very poor judgment making her safety a major concern; she won't
eat or bathe unless reminded; and she becomes exhausted with the
least amount of exertion. She has very little short-term memory;
is confused and disoriented; and can no longer follow a subject well
enough to read, watch TV or even have a conversation. I retired early
almost two years ago and have provided her almost continuous care.
It has been exhausting and depressing. I have lost my mother as the
person I knew and I felt like I had lost most of my life. I had to
go on antidepressants to get through the days. I finally insisted
that my sister take mom for awhile as I could no longer do it.
am the only child and now provide 24/7 care for my mom. She has Alzheimer's
and needs constant supervision.
I've been doing this for almost 12 years. This on top of a work-related injury
that bankrupted me leads me to believe that it is easier to deal with my mom's
present condition than the government agencies responsible to provide assistance.
The bureancracy and red tape are overwhelming.
She gets too much from pension and social security to qualify for Medicaid.
My ability to continue to earn an income and at the same time provide quality
care for her is my biggest problem. Can't our government realize that a program
as they have in Canada would be more cost effective? Pay the primary caregiver
$1,200.00 a month or pay a nursing home $5,000.00 to $7,000.00 a month.
I have found that dealing with governmental and related support agencies to
be very frustrating and a bigger burden than dealing with the disease. For
example I am reefed from social services to the Medicaid people who then refer
me back. I cannot seem to get straight answers from anyone in government. This
in itself puts a bigger physical and mental strain on me as the primary (only
full-time) caregiver than dealing with the disease itself. If we can spend
millions in foreign aid why can't we afford to care for our own?
mother has AD-Diabeties-glucoma, She has been with us since November
2001; she was also here last year for a while, now she is here till
God takes her from us.
she first arrived, her suit case was a mess. We couldn't figure out
her meds, so we called the pharmacy. She was very confused at the
being here, but after four months she realized she was here forever.
That was a big step. She goes from one day to the other never knowing
what is going to happen next. But we are getting through it, hard
sometimes - very difficult - some days it's fun which is great. Sometimes
sleeps all day, which worries me but I understand that is the situation
- gets lonely- and then we go out to eat, which is her favorite thing
to do, but then is very expensive. We have a long road ahead of us,
and God be willing will be there with us. The prayers do help get
through the day. I am tired most of the time, and have to stay up
to watch. The worst thing is when I'm sick; it's like being a mother,
who still has to go on with her daily routine, no matter what the
day brings. I could give you all kinds of experiences, but just in
six months, there isn't time so if any one wants to know something
I will share it with you. Good luck and God bless.
father is 80 years old and is in the end of the 5th stage of Alzheimer's
Disease. He is no longer the Dad I once had. He is never happy no
matter what we do to please him. He doesn't like where he lives and
he doesn't like any foods. He is in a lovely retirement home at the
present. I am 41 and have three young children. Luckily I have a
sister nearby that shares the load of Dad. My Mom passed away two
years ago after 54 years of marriage. Dad's disease was a blessing
during this time. My sister and I handle everything for him including
finances and doctor visits. It is almost more than we can bare. We
are brokenhearted over our father and it is a struggle everyday.
This is what they call the circle of life. I am very thankful of
what I have including my dear father. My sister and I get criticism
from family member that have no clue about the disease. This has
made things even tougher on us. We have been told by several doctor's
that this disease is tougher on the family than the patient.
have been caring for my mother and father for the past four years.
My mother was in a nursing home for 1 1/2 years and my dad in the
same home for approximately four months. My mother broke her arm
while in there and then broke her hip. She wasn't given diapers and
they lost her teeth, and then they lost the new set I had made for
her. Most of the things I had brought to put in her shared room was
stolen. My poor dad could hardly walk while in there and they had
him tied in bed because he was aggressive. I believe to this day
that my mother was sodomized while in there because when I was able
to get up enough nerve to bring them home and started clean her.
Her rectum looked hideous. I have four siblings who do not help because
they cannot deal with it. It is only me and some help from my husband
when he gets home from work. I am 53 and my mom and dad are 80 and
81. They are combative and very difficult at times but I am so glad
I am doing this because I know they are now being well cared for.
am sole caregiver for my husband, age 70. We have been married
for 51 years. My husband was always very healthy, bright, assertive
and I would never have believed that our retirement years would
have been like we are now. My toughest problem has been to see
the essence of him and his personality slowly and relentlessly
ebb from him. He no longer is my husband in the truest sense and
has become a beloved person whom I am having to learn to love for
the one he is now. I can't really sit and contemplate all the ramifications
of and the future of his disease or I would not be able to function.
I take one day at a time and really do not dwell on the horror
of it al. My grown children, five of them, are very supportive,
try to help me to get a respite once in awhile, and that helps
a great deal. The isolation and loneliness is always with me. I
have an internet Alzheimer's support group that has been like a
lifeline for me as they know exactly what I am going through and
can give support.
husband was diagnosed with PSP (Progressive Supranuclea Palsy about
five years ago. This is the same disease that Dudley Moore died
of a few weeks ago. He is only 73 and this has robbed him of his
coordination, his speech, his swallowing, eyesight, and more. He
cannot do anything for himself. I am 77 and take care of him full
time. I only have 1 1/2 hours of a health aide three times a week.
It is very difficult, but I took a well-needed respite of six days
in February and put him in a nursing facility for $1,500 so that
he would be well taken care of. Well in those six days he had two
visits to the ER. He fell out of bed one night and his catheter
came out and then two days later he fell out of the wheel chair
and had seven stitches in his forehead. So I will not put him in
a nursing facility again. What I need is more help, which is so
hard to get. I would also like to chat with other caregivers.
mother had pelvic floor reconstruction in April 2001; I took off
six weeks to help her, as well as my homebound dad. She is 80 years
old and the surgery left her still incontinent but, in other ways,
much better. She has strict limitations she must adhere to, so
I made myself available to help.
August 2001, my 80-year-old dad with mild Parkinson's had a cervical
discectomy; six hours after the surgery, he went into respiratory
distress, was in ICU for 60 days; on a vent, then trach; couldn't
speak or eat. He then went to rehab; came home in October on a
feeding tube - supposedly due to complications of the surgery.
mom is his primary caregiver but I help quite a bit; my mom and
I inject liquid food into the tube at night, which he is on for
seven hours; we also have to crush medications and inject them
with water in the tube four times daily. Mentally, for me, as well
as them, it's difficult to see someone who could eat and drink
one day, not be able to do so since. I had to quit my full-time
job in July 2001 with the intention of being available for my parents
before my dad's surgery as well as the recovery after. Well, after
he became a critical patient, my priorities shifted and my time
was spent communicating with a stream of specialists, as well as
taking care of my mom. I do have a brother who helps occasionally;
I know he loves our parents but his availability and sensitivity
are not to be depended upon. I am now in a position, mentally,
where I need, financially, to be working but my parents' needs
are so great that I find it hard to separate myself from them.
I have a family and they are supportive.
mother fell in the street on August 10, 2000. She has a brain injury
due to the fall and is in a nursing home. I am an only child so
all the responsibility falls on me and my two children. I never
realized a fall could do so much damage. She knows me most of the
time but her short-term memory is not good and she does not remember
my birthday or hers. That is hard for me to understand. She has
lost a lot of her long-term memory also.
one who thinks it is easy putting a parent in a nursing home is
mistaken. That was one of the hardest things I have had to do.
I had promised my mother she would never have to go in one and
I have a lot of guilt about that.
feel like I am in a no-win situation. To make things worse, she
cries a lot and that upsets me.
have read as much as I can on TBI, but I still have a hard time
understanding what is going on with her and myself.
children have been very helpful with visits and other things as
much as possible, but they have their own families to care for
and they know they may have to face the aging process with me and
their dad in the future. I know that must bother them. I could
not do it without them but it hurts me when I hear my daughter
leaves the nursing home crying when she goes to visit. Not sure
what I can to about that, she still takes her turn going.
always thought it was awful when people did not visit their loved
ones in a nursing home situation but not any more, it is very difficult
going and seeing her so miserable. I will not judge anyone decision
do I keep a good relationship with my siblings? There is a strain
am 25 years old , youngest of three daughters of Ms. Matilda Davis,
a 58-year-old who sufferers with Alzheimer's disease. I am also
her caregiver for now, it is sad to say. But it is a struggle because
I am pregnant with a 7-year-old son and because of my mother's
condition I can only work about three days per week. I currently
have my mom in adult day care, which is very helpful but also
expensive. For now this is my story.
I should live old enough to retire, the following is the greatest
gift I could give to my son:
will sit down with him and share my goals for my future as an aging
parent. I will enjoy downsizing my living quarters and personal
belongings so that I will have time to travel and enjoy life. I
will put my finances in order, I will secretly plan for my passing,
and I will enjoy and appreciate all the time my son and his family
are able to give me. The goal of parents is to leave this world
with their children successful and happy. To deprive them of this
because of our unwillingness to accept our growing old and someday
dying and worrying about every ache and pain is a failure in our
parents, who are in their 70s, and my in-laws who are in their
80s, have demanded more than my husband and I can give, and it
has taken a toll on our health, our marriage, our jobs and our
every day lives.
I love my son to ever do this to him.
am the caretaker for my 86 year old mother. My sister lived near
her for 20 years and looked out for her but moved three years ago
and there wasn't an independent living center near where she lived.
There was one near me so she moved here.
the three years there have been a few ups and downs, but for the
most part my main job has been getting her to appointments and
picking up her medication. She has always had some short term memory
loss which upsets her greatly and makes things difficult for me.
But lately things seem worse. I am most frustrated by setting up
appointments and having her back out at the 11th hour. Today she
was to have an MRI. She has been very hard of hearing since childhood
so we communicate a lot by fax. Anyway, I got a fax early this
morning saying she wasn't going to the appointment and it wasn't
my problem. Well, of course it is my problem, because I arranged
my work around taking her. A month ago she refused to have a tooth
pulled. Today I think she couldn't remember what the MRI was for,
got afraid, and decided to dig her heels in and not go. When I
went to get her for the dentist appointment, she left her room
and hid in the dining room of the facility where she lives.
hired someone to help her with dishes and laundry. When the person
came to help her she hid from her! Luckily the woman persevered
and coaxed her back to her room. My mother thanked her, paid her
after three hours, and told her to return. The following week my
mother couldn't recall asking her back, said she didn't want her,
and there I was again with a decision reversed. I am suspicious
that her medications are contributing to her confusion of late
but her doctor doesn't seem really versed in meds for geriatrics.
It is all so stressful!