are true stories sent in by today's caregivers:
My husband’s dad, my father in law, has Alzheimer’s. My
husband will not deal with it and I feel like I am left holding the
bag. One fear my husband has is making his father mad, making his father
angry or having his father get mad at him. That includes any of my
doings or actions that may cause or not cause him to get mad. What
I mean by "or not cause" is that I think that we may not
be able to tell the cause of his getting mad because of the illness.
We now have to take care of him and my husband ignores everything
that I do that leads to us to taking care of his dad. He wants to
take care of his dad, and says that he supports me in my actions,
but he will not do anything that will be or may present a conflict
with his dad, such as having him stay the night or when he is in
our home allowing father-in-law to leave in a short span of time.
The home where he is staying now has asked us to move him out, more
than once. We are more than willing to do that but I guess we need
support, guidance, education and self help. I guess we have to prepare
for a new life with his dad and his illness.
Even today I asked my husband to read about communicating with a
person with Alzheimer’s on this web site and my husband got
real stressed. I want to take the first step but I guess it's a long
road to that first step. I want to do it to help out and take care
of my father-in-law. I suspect there have evidently been people who
are now and have in the past taken advantage of him. I think we can
provide some protection along with the care giving. My husband is
very kind to his father and is the obedient and respectful child.
Please what can I do? Thank you for this outlet.
I am a young woman with a mother who is in a nursing home after she
had a quad bypass. She is only 64 and has three children. I'm the only
She had complications
in surgery and had a few strokes on the table. When I was allowed
to see her, I was shocked at what I found. She had
been put on a breathing machine and feeding tube and she had told me
many times she didn’t want that. But I guess my brother made
the final decision. Well now she can’t walk and has had brain
damage and is confined to bed. She has her good days and sometimes
she remembers me but mostly she gets angry and doesn’t know who
I miss her so much.
She is my life. It was just she and I growing up and I find myself
dreaming of her as she was. Last night I had a
dream so vivid I woke up crying and I find myself doing that a lot
but only in the morning when I'm vulnerable and can’t control
my feelings. The dream I had was a good one and I don’t know
why I found it sad. We have lived in Florida all our lives and I have
never seen the mountains. I dreamed we drove together and she made
me close my eyes as we turned on the road and when she told me to open
them I could see the mountains so vividly and I looked at her sitting
there driving the car smiling at me looking like the strong independent
beautiful woman that I always see her as and I woke up crying. I know
she is still here with me, but I still feel like I've lost her. I don’t
know why I'm writing this; maybe to find that these are normal emotions
and feelings and will it ever get easier. It's been 6 months since
the surgery and it’s still very hard. I can’t really talk
to my brothers about it. They are older than I and I really didn’t
grow up with them. My dad left a long time ago. I visit my mother often
but it’s hard to see her like that. Thank you for letting me
get this out there and I hope to hear from other people in the same
I am 35 and single
and the only relative close enough and who has the time to care for
my grandmother. My grandfather passed away about
a month ago and with him gone, grandma is alone. Except for me, her
children live far away and as far as the grandchildren I’m the
only one who lives close enough (our homes are a 5-minute drive away
from each other).
It’s all so new to her, being alone after being married for
almost 70 years. She has become depressed but will not admit that,
does not eat except when I force her and never leaves the house except
when I force her to go shopping. She has lost interest in everything.
I know she needs time to adjust and I do everything I can to make it
easier for her. I work and go to her house every night, call often,
have dinner with her — Friday night is DVD night now — an
actual date for me now seems so unlikely.
Most of the time
I really enjoy being with her and helping her — thank
god she is in relatively good health but so lonely. She wont join any
senior centers or even try. She has no friends left (they have all
passed away). Her children, when they do call, always wind up arguing
and I get in the middle of it. I feel guilty all the time that I go
home at night knowing she is alone, but I enjoy my alone time in my
own apartment. She has a four-family home and it would be so much easier
if I could live in one of the apartments there, but she thinks it would
not be right to "throw" a tenant out.
How can I convince her that me living in her building would benefit
both of us? I could be right there in a second if there were an emergency
and be there just so she knows she is not really alone. How can I convince
Thanks so much for letting me get this off my chest. My friends don’t
really understand. They just tell me to hire someone so I can have
a full life of my own. But she is my grandmother. I grew up with
her. How can I turn her over to a stranger? I know she would never
agree to that
After reading a few of these personal stories I know I have it easy.
Easy because my father lives in a retirement home where he is fairly
closely monitored and they do listen to me when I have concerns or
requests and fill them.
There is no monetary problem.
All my problems are emotional.
My Father was raised during the depression and entered the Air Force
in WW II. His father was almost never home due to his line of work
but he was also an alcoholic. His mother was not the happiest woman
on earth with no husband around when she needed him and his demeanor
caused her great heartbreak. So I believe they really never spoke
very much and hence they split up when my dad was I'd say 20 something.
My dad married a my mother and they had me. According to some they
were very happy. My dad drank, my mother was quiet and patient. My
dad was also very negative and controlling, belittled my mother and
gave her a royal battle at every turn.
I do not remember a happy moment during my first 8 years of family
life. Arguments calmed by police, family quarrelling etc. My mother
picked up and left my dad but she more or less had a relationship
going on with her boss who was a womanizer to start with. My dad
I stayed with my mother until I realized I wasn't very important to
her. I would wake up in the night and she wouldn't be there. Long hours
waiting for her to come home from work.
I decided to go and live with my dad because his workplace was situated
right under the apartment he lived in. It wasn't easy for me living
with him ... he tried to make me the woman he lost; he ordered me
and belittled me.
Years later as of today I'm 56, he's 85. I can see he is failing.
He is legally blind, he wears a hearing aid in both ears, he has
a thyroid problem, he has a pace maker, he has an abdominal aortic
aneurysm, he has degenerative bone disease in his lower back. He
has prescriptions for everything out of whack.
My intelligence tells me that I should get the power of attorney
activated just to enable me to pay his bills at the bank. My intelligence
tells me that because he is a war veteran and his hearing problem
is on their disability program and I can get every service imaginable
for him that I should get an active power of attorney because they
are not even supposed to talk to me about him unless that P of A
These elderly people need someone that can speak for them, which
is what I've been doing.
I was air ambulanced with him for surgery just lately as the doctor
involved could ascertain that someone blind and deaf should have
someone with them. Guess what, my accommodations and meals won't
be covered because he's not approved for a companion.
My big question is, Am I going to throw in the towel when the walls
I have to climb over become too exhaustive for me? I'm already there.
I have no money. My dad could pay for that 100 times over and more
but he's too deaf, too miserable, too miserly, too backward, too
stubborn (because as you know everything has to be a battle) and
I won't even enter a conversation with him about it. He can't even
hear me say passing phrases. Anything I say has to be said so many
times it loses it's delivery. He says my voice is too high pitched.
Today he's looking for anti embolism stockings. He was given a pair
at the hospital to put on. There wasn't a nurse anywhere that could
get it done, He's too abrasive. In the recovery room, the first thing
the nurse asked me is "how do you shut off this hearing aid?" "Even
the surgeon's patience was running out listening to that squealing." I
adjusted the aid and said you know what, now that my dad is sedated
let's you and me put on a pair of anti embolism stockings, he's supposed
to have them on and no one will venture the task. We put them on.
Next day I went back to visit .. they were off.
Today he's asking me where they are because he legs are swelling
up. Frankly I lost them but I've found them again. I told him because
he gave us all such a battle about them don't even think about going
back and asking about them but he can't hear and if I yell I get
mad inside automatically when I'm not even mad/angry.
I cannot go a day without thinking about things I could do for him
to help him. Foot care clinic appointment, getting a physiotherapist,
getting her to assess his need of a walker, getting Veteran's Affairs
Canada to supply him with one.
Man oh man. I'm a woman of progress and I can't stand anything in
my way especially when people aren't using their brains.
I ask you, does a blind and deaf man wear a big sign on his forehead
stating his disabilities. Not where I come from. Do you think an
ambulance attendant or an attendant in an air ambulance vehicle knows
the patient's communication problems? Not mention if he should die
on route with no family with him.
I'm caring too much. I'm sure of it. I have to just let him go. I
have to just cut myself off from him and not get involved because
my hands are tied. And he's tied them, he's not showed me one ounce
of genuine love or affection and no inheritance can ever take the
place of that. My kids do not go and see him because they can't stand
his disrespect and abuse of me. He has made his own bed and eventually
he will lie in it.
I'm sure I have said enough but you know what I haven’t; you'd
never have a clear picture of this man. One nurse in the hospital
was able to get his clothes off for a bed bath. She was the type
you don't say no to. I asked her "What am I going to do with
him?" (Remember he can't hear.) She asked, does he ever say
That is a very good question. If someone doesn't say thank you when
you do something for him, do you keep on doing it?
Where do I begin? I am the youngest daughter of four children. At
my 42 years of age, my parents could be my grandparents, with my dad
being 94 and my mother 80. My father suffered a stroke at age 88 which
left him with left-side paralysis. He had been walking fine with a
walker, but his speech is now slurred and his mobility has been greatly
reduced. He has been an alcoholic (drink of choice is cheap wine) and
a tobacco chewer for about 40-50 years. Never the destructive or violent
alcoholic, but we did experience some volatile moments in our lives
at the result of my father's drinking.
Aside from that, he had come to the United States at the age of 17
and worked in the farm fields of Central California before joining
the Army. In the Army he served as a chaplain's assistant. He served
three years then returned to the States and worked as a cook until
he was about 72 years old. My parents have been married for 55 years.
He has always been very active, tending to his vast vegetable garden,
cooking for his family, bowling, pruning trees and monitoring finances
enabling each of his four children to have a vehicle to drive when
we received our licenses, allowed us to enjoy small vacations to various
California amusement parks, and he has also financed other relatives
abroad to come to the States.
After his stroke, he would continue to work his garden balancing with
the walker, right hand holding tools. Difficult to watch such an active
man, now barely able to stand, but still try to do what he loved most.
Within the last few years his mobility began to deteriorate even more,
he was falling more, and his reduced mobility made it difficult to
make it to the restroom in time. The last two months have been the
most difficult. Our mother had back surgery two years ago and is unable
to lift, balance, or stand for long. She is now too in early stages
of dementia, so she is unable to care for my father like she has done
so in the past.
After several sleepless nights due to continuous calls from our mother
needing our help to lift our father up from a fall, we decided it is
now time to enlist the help of outsiders. Custodial care did help out
a little, but the cost is high for the hours needed, and my parents’ meager
Social Security earnings do not cover the costs, even with our financial
help. Next decision to be made was whether my father would qualify
for convalescent care. I've always thought that my father wouldn't
make it in convalescent care, because he wouldn't be able to use his
vices and he wouldn't be able to be "home." Well, after going
around in circles with the medical and social services sectors, my
father is now in convalescent care, receiving good care, and he is
doing much better, yet the difficulty now is when we visit him. It
is heart-wrenching to hear him say how much he just wants to go home
and be with all of us. It's like we know he's getting good care, but
he can't be "home."
How can we deal with this? It's hard. You never think about this until
it happens. The one that cared for you is now powerless, and dependent.
This is what's hard on us now, dealing with how much it hurts to put
your parent in convalescent care. Does anyone else feel this same pain?
Well, as of yet
my story is not horrific but I see the writing on the wall and feel
powerless to do anything about it. My mom has lived
with my wonderful husband and two beautiful boys and I for over two
years. Before this time she lived down in Florida on her own in an
apartment. Our family life growing up was difficult mostly because
she is such an unbelievably negative, controlling, difficult-to-please
person. Being the youngest and only girl, I got much of my mother’s
attention and support. She was very pleased and proud to have raised
a professional ballet dancer. I was the star in her life. Knowing what
she was truly like yet feeling grateful for providing me with a wonderful
life I felt compelled to bring her into our home after she had been
hospitalized with a COPD exacerbation.
My brothers were not helping her, she refused to spend any of her
money on a new car and was calling me complaining all the time about
her sorry state in life and the fact that no one did anything for her.
I always knew I would be the one taking care of her and I guess I felt
it was time. Reluctantly she came.
One of my brothers
packed up her belongings and drove her to Chicago, unloaded the truck
and left the same day! The next day she couldn’t
remember how she got here. She is on 24-hour oxygen, has developed
some dementia, which the doctors like to write off as normal for her
75 years. She now sleeps most the day. She does not want to give me
power of attorney over her affairs, but her memory is so bad she can’t
remember anything about her finances or doctor appointments.
Everything I try
to do for her she goes back and re does and screws it up. We make
a joint decision and then she reneges. There is no consistency.
She bluffs her way through doctors appointments, phone conversations
with friends and family members.. I feel if I am to care for her, I
need some control. If I don’t get it I’m afraid when something
bad happens I won’t be a able to be a proper advocate for her.
She always talks about wanting to go somewhere else but she has pushed
away everyone else in her life with her nastiness and I am the only
one helping her. These days she is pushing me away as well, and I have
to admit I am beginning to not want to spend time with her.
I work 25 hours
per week, raise my two young boys and try to keep a light-hearted
and happy home for everyone who lives in it. She doesn’t
leave the house without me and won’t participate in family functions
with my husband’s wonderful family. Today I stayed home from
one of these parties because I didn’t want to leave her alone.
So my two boys and their dad are without their adoring mother and wife.
I feel so sad for her but most of her problems are self-created, which
she has never been able to recognize.
a horrible life growing up in the depression in West Virginia. She
abuse, poverty...My father gave her a nice home in Florida
but nothing could fill the loneliness and pain deep inside her. I thought
being with our very happy family would somehow soften her. I thought
she would be happy living out her days here quietly but I was wrong.
She is still miserable. Yes, she on lexapro and xanex. Well, thanks
for letting me vent. I read all these very sad stories and feel for
each and every one of your situations. God bless and keep your hearts
happy. As I am only at the beginning of what I fear may be a long saga,
I brace myself and know that I’m doing what’s right for
her. She would die in a home if we could even afford to put her in
Hi, my mom is in the final stages of AD. This has been a very trying
time for my whole family. Our mom is the backbone of our family. If
anyone (grandchild, friends, siblings) had a problem, Gramma would
help or listen, or just be there.
I just wanted to know if anyone out there is experiencing the same
things we are. She has gone from being the happy mother to crying,
wanting her parents (who have long been gone), not wanting to be alone
and cranky. She had a stroke in July. The doctors did not expect her
to live. They advised us to call the family all home and just be with
Well she is still here, in body. Her mind is gone, she does recognize
us if you tell her who we are, not sure if she knows that she is our
mother. In the last couple of weeks, she is starting to pull her hair
and pinch herself, hard enough to make bruises. Does anyone out there
know if this is a normal thing? We know the crying and crankiness is
all part of this, but no one seems to know if the hair pulling is part
of it. Please help
I have never known my mother to be without some type of pain. She
was constantly bedridden, having surgeries that she could barely recuperate
from. She was also full of laughter and a resolve to fight these ailments
that kept knocking her down.
Growing up as an
only child, I was the "helper." I learned
to cook, clean and take care of my dad. Mom taught me all her little
secrets; how to season food and set a table to spring cleaning and
winterizing. Dad was in the Navy, so we moved a lot. Friends were a
luxury. School events were rare and therefore special when I could
participate. I was never neglected or abused; both my parents made
sure they spent quality time with me. They were my best friends. They
still are. I was adopted at five days, have always known I was "chosen" and
the "child of their hearts." Helping them now is a loving
duty that breaks my heart.
I am now 55 years old, have one beautiful daughter and three wonderful
grandchildren who live on the east coast while I'm in the west. And
while I can call her at any time to cry and bring her up to date on
Mom's health, I feel so very much alone.
Mom and Dad are both 85, married for 60 years. When Mom had a massive
stroke and heart attack in 1999, she was in a coma for 21 days. Surprisingly
she suffered little dementia and paralysis, but you could tell she
was fighting to regain ground. She missed reading books as she couldn't
retain what she had just read. She took up crossword puzzles and
her arts and crafts again to keep herself busy and occupied.
Since then she
has had three more small strokes, each time taking precious memories
and reasoning. Her blood pressure is closely monitored
with medication as is her heart. She suffers from nerve damage in her
spine, hips and legs that causes excruciating pain. She has had multiple
spinal fusions, nerves spliced and severed. The pain medications she
takes give her "moderate" relief. She stays in bed most days
or we wheel her around in her wheel chair. She cannot propel herself
due to limited range in motion in her arms and the pain that emanates
from her spine and hips. She was recently diagnosed with osteopenia,
the forerunner of osteoporosis. The muscle spasms she suffers through
are horrific to me; I see the "rope of muscles" contracting
down her leg and my heart stops. I rub her with a pain salve in addition
to her other medications, warm compresses help, but it actually brings
more topical pain if I try to massage her. Now I understand why she
couldn't endure any of the physical therapy that was prescribed for
When she suffered her stroke in 1999, my professional life went downhill.
I was an assistant manager at a national drug store chain that had
little sympathy for my dilemma. I asked for a transfer to a store
so I could be closer to their home. No. I asked to be demoted to
a position that would allow me to choose what store I worked in,
so I would be closer. No. I cited my own health as a reason; I'd
had a spinal fusion in 1993 and the osteoarthritis was advancing,
making the demands of the job harder to meet. No.
After a poor performance evaluation I decided to quit. I was also
separated from my husband, so my emotional state was fragile.
I was able to secure a small mobile home across the street from where
my parents lived. How I hoped my luck would change. Being available
for both my parents helped them so much, I felt leaving my career was
I was denied employment at one of the local chapters of caregivers
in our city due to a snag with my mom's Social Security benefits account.
Four months of interviews and home visits wasted.
I found a part time job that pays my immediate bills. I couldn't afford
COBRA so I am still uninsured. I have neglected myself badly because
I have been so busy trying to help Dad take care of Mom. The emergencies
the past five years have taken all of my savings and retirement. I
fear I have waited too long to make arrangements for myself, that I
feel stranded and do not know who to ask for help. And now my health
is in need of attention. I was so tired of hearing about pre-existing
conditions, I just gave up.
My dad refuses help as long as he is able to care for her with my
help. But his health is failing rapidly also; he has already had two
strokes in the past 10 years.
I've always imagined
myself as strong and resilient. I know I have no excuses for not
finding information for myself; I honestly thought
it would get better or things would "just fall into place".
Any suggestions, short of a swift kick in the pants would be appreciated
and welcomed. I need help. Thank you for listening.
I remarried in February of 2002. My mom came to live with us six months
later. She had been quite ill and came to our house to recuperate.
Since then she has been with us.
We built a room onto our house for her so she could have her own space
and we could have ours.
She is suffering from degenerative back disease and after taking a
serious fall in our garage has been unable to walk on her own. She
is using a walker and sometimes it's still too difficult for her to
get around. We have a wheelchair but her upper body strength is gone
to she can't push herself around. Besides, she is fighting with all
she has not to get to the point of having to have to use it.
Sometimes I get so frustrated that she moves so slow that it's much
easier for my husband and I to fix dinner as well as do other things
around the house. Even though she wants to help it drives me nuts because
I move so much faster and she gets in the way.
I thank you for this opportunity to share my frustration. At the same
time I've got this big guilt thing going on because she was such a
terrific mother while I was growing up and we were very close. Now
I often feel such a burden has been laid on me.
My father passed away in 1997 and I get so angry at him for leaving
this up to me. By the way I'm an only child so it isn't like I can
have help from them.
At this point my husband is so much nicer then I could ever be with
She will not go to an assistant living facility. She doesn't have the
mental strength to suffer another move.
Again, thank you for allowing me to get some of this off my mind. Everyone
I talk to telsl me how lucky I am to have her and that I am doing a
very good thing. I wish I felt the same.
I take care of my mother who is 74 and in a wheel chair. I am the
eldest of seven (although I feel like an only child), take her to doctors,
shopping, wherever she needs to go. I also take care of my youngest
daughter, my husband has fibromyalgia, car-pool my nephew to school
and back, feed and tutor 25 kids in an after-school program, and volunteer
for 4-H. WHEW!
On my spare time
(!) I make blankets for the Project Warmth program, set up summer
picnics for our co-op, and my eldest daughter had triplets
last year. I’m tired. I have looked for support groups here in
Michigan but nothing has materialized. Oh, I should mention that I
also, as the head of the family, take care of my six brothers and sisters,
even though they all have families of their own. I just keep asking
myself, WHEN IS IT MY TURN? I've done this my whole life. Thank you
for letting me vent.