Caregiver Stories

The following are true stories sent in by today's caregivers.

12/26/03

My husband and I take care of my mother. Four years ago she had a debilitating stroke. Three years ago she was diagnosed with cancer. I was back and forth for a while helping my mom, and when other sources of care ended I was in place as well as my husband to provide her with 24 hour care. We have had one weekend off in about a year. We hope to get one in a month or so.

There is enough money to run the household and take care of Mom, but our needs cause a shortfall of about $300 to $600 a month. Credit cards have been the temporary answer. This, of course, can't go on forever. We would each like to get a part-time job, very part-time, doing something we could squeeze in. The problem is that there is a level of chaos built into our routine and our efforts have been sabotaged. My mother wants our constant attention and plays many games to get it. She gets on the phone and tells certain friends and relatives things that simply aren't true. It is an amazing feat of manipulation and treachery. Sometimes we have sweet and pleasant times together, but Mom likes to stir things up when they get routine and restful. Chaos ensues.

We love her and want to help her live as long as possible. It goes without saying. We had Christmas with the relatives and she was fine if quiet. As soon as the last one was out the door, she began to moan and repeat words over and over and look at me blankly when I asked her what's wrong. I will get her to the doctor or a hospital in the morning if this persists. She does it from time to time and then snaps too with clarity and starts kicking behind and taking names.

Well I must go get her temp. This is a tiny glimpse into the day in a life...

Lyn Van Atta
pubble@email2me.net

12/24/03

I'm a 38-year-old single only child, and my parents are 82 and 80 years old. They still live independently but it's been getting harder, with three major surgeries for my mom this year. I know I have a lot to do and to face over the next few years and sometimes don't feel up to the task. Sometimes I wish I had a spouse or siblings to help, but then, too, I know I'm very blessed in an incredibly rich community of friends, and I have a great, well-paying job that lets me hire home care for them and lets me give my mom a little respite stay in a nursing home recently, so both she and dad could have a break. I'm lucky, but it's still so hard.

I'm very glad to have found this site, though.

Jan Bultmann
jan_bultmann@hotmail.com

12/21/03

My story is no differnt than any other caregiver of someone with Alzheimer's; some have support from families and friends, others like me have none. I have learned to be resourcefull out of need, but I am beginning to worry about how I will get around to do grocery shopping when she is no longer able to go out shopping with me. I worry about bills not getting paid due to lack of money. I feel so alone and isolated, with no one to come and visit or very few even calling us. I don't know how many other people have found family and friends turning their backs on them.

I reached a point where I finally said to myself there has to be a way to inform people of our plight so I began writing poems about Alzheimer's and what it does to the victim and the caregiver. Someday I hope to publish them for all to read.

Mary Metcalf
pegesus_unicorn@yahoo.com

12/5/03

First let me tell you my husband and I have just gone through Alzheimer's with his mother; she just passed way at the end of October. My husband's family was lucky his niece took his mom in when she wasn't able to live alone anymore. My mother-in-law was well taken care of by her granddaughter and that wasn't a worry to us, but watching her go through all the stages and the last months and weeks were really hard, not just for my in laws, but also for me; my mother-in-law was my best friend. In the 32 years my husband and I have been married, we spent a lot of time together and I miss her terribly.

I tell you this because now my mother has a problem with circulation and her brain is being affected. She has mini strokes frequently, and every time she has one her abilities and personality change. My dad is still alive, but he is 82 and has some problems with short-term memory and understanding everyday things, although they still live in their home of 50 years and I know he will fight if it comes to putting mom in to a care facility.

For me it has meant leaving my part-time job and putting a strain on our family finances so that I am able to be available when they need me; and even though she sees her doctors regularly it is confusing trying to figure out just what she understands and what she doesn't . At times she acts like she is about 8 or 10 years old, and at other times she acts like my mother. My dad is not in the best of health either and a lot of times he lets things go instead of arguing with her to do something. She has some problems controlling her bladder and we can't get her to keep underwear like Depends or something on so this is a constant issue. It bothers her to think that she can't control her bladder and I guess the Depends remind her, I really am not sure. I feel very alone. I miss my mother and I miss my mother-in-law. I have a 30-year-old daughter, but she works long hours at two jobs, so I don't get to talk to her very much. Last year my husband had complete kidney failure. He pulled through and recovered. Well I wish I had some great advice to give, but I am afraid I haven't figured it out yet.

Stephanie Smith
smijone9@msn.com

12/2/03

My husband and I had been living 650 miles from his mom and step dad. We knew that her memory was leaving her and she was becoming unable to care for her husband's serious health problems. We gave up our home and careers to help care for both of them. Eight short days after we arrived with 10,000 pounds on the moving truck, her husband had a severe stroke and died two weeks later, leaving us to care for her.

That's when we realized that she had all the signs and symptoms of Alzheimer's. He had kept her from seeing the doctor (they shared the same doctor), refusing to let her go to the exam room with him on his visits. Apparently, he did not want the doctor to find out about her condition. The Alzheimer's had gotten to a point where it was making his life hell and he was hoping she would die before he did. He tried to give the land to the neighbors, but couldn't get her to sign the papers. But he did manage to give their life savings to this same neighbor.

Having been completely neglected, the Alzheimer's had helped to break even with her payments, but they weren't going to pay for any facilities where she'd be cared for. Can anyone share some information that will help us? Any advise will be greatly appreciated!

Lisa Chappell
decorates@aol.com

11/30/03

While it breaks my heart to read the stories of devotion and grief that I see on this site, it also comforts me in a way to know that I am not alone. What is it about siblings that refuse to deal with the needs of an aging parent? That responsibility does not just end there in my story; I have a mother that defies logic to deal with as well.

My father recently suffered a stroke and while he is improving and trying to get around, he requires constant care. He is incontinent and unable to get up or move around without assistance. My father was a very strong and independent man prior to the last few years. Alzheimer's and Parkinson's have weakened him and this recent stroke has made things even worse. My sister lives 20 minutes away and is married with a 6-year-old son. I live two hours west and also have a wonderful husband and 7-year-old boy who is the light of my life. My father suffered the stroke in early November and I have spent a total of four nights in my own home since then. My sister has visited a total of four times and called twice. She barely talks to my father and makes no extra effort to see him. She blames her lack of contact on her schedule. She volunteers at her son's school for a few hours a day, then works a second shift job at night. I quit my part-time day job to help my father.

My mother...oh there's a peach of a story. She married my father 37 years ago. She was previously married and had me. My father legally adopted me seven years ago - that's another story. My mother also never deals with confrontation or stress well. She is an emotional basket case who thinks that you show real love by buying something nice for someone. While she did take on the bulk of my father's care when his health started to decline several years ago, she made me aware every time we spoke of what a burden it was for her. She also berates my father almost daily, taking out her frustrations on him for the situation they are in. She works full time during the day as a receptionist for a very understanding boss who would give her the moon if she asked for it. She despises my sister and has always been envious of her somewhat easy way of life. Yet she is always polite and nice to her face. That's the way she is with everyone. She also complains constantly of how tired and overworked she is.

For the past month I have done everything for them. I cook, I clean the house, I look after Dad and keep track of all his meds and doctor visits. I take him to his appointments and work with him at home. I am there Monday through Friday and don't take a break. I miss my husband and son so much it hurts. My heart breaks every week when I have to drive off and leave them. We had considered moving closer to my parents' home, but as much as my mother and sister take advantage of me now, I'm afraid it would be 10 times worse if we were closer. I won't subject my husband and son to the kind of abuse my father and I have had to deal with. I've aged more in the past month than the past 10 years combined. I can't sleep more than four hours a night and my patience is at an all-time low. I don't want to abandon my father, but I cannot bear the weight of this situation on my own. I would love to find a support group to go to, but until my mother gets home in the evenings, the groups are over.

Isabelle
isabeyaha@yahoo.com

11/30/03

My story only shadows those here. I hang my head in overwhelming grief often and ask "Why?" Life should not be like this.

I am 45, fast approaching 46. Once an outgoing, driven professional, over the last three years I have become isolated and depressed to the point I have not been able to look for work and there is no income at all. My father passed away with three weeks after being diagnosed with congestive heart failure. He passed January 6, 2001, leaving behind my mother (both were 83)after 65 years of marriage. My father? A very good man. Bottom line. There, I lost my light. I didn't have any time to grieve as mom fell seriously ill along with her health problems related to age. Deafness, dementia (growing worse rapidly), serious heart conditions, loss of sight in one eye.

I found their wedding picture the other night. Both 21 back in the 1940s; beautiful people, young, full of hope, vibrant, in love.
I relocated from California to Florida about two years ago when mom was doing a bit better (she was always independent in her own care) only temporarily because I needed to get away from everything. I lost my long-time career over the passing of my father because of my own depression from all this and constant caregiving. At this point, for myself there is no income, no health coverage, nothing.

Mom ended up suffering two mild strokes that made the dementia worsen. I came home. (Thank God I saved enough to travel.) I am alone. No family. I have two older sisters in their 60s with grown children who have children of their own. No one understands how and why they turned their backs on me or mom, even dad for that matter. Selfish and self-absorbed. Both very well off financially, live 20 minutes away and as I witnessed over the Thanksgiving holiday, no calls, no cards, no visits from any of them.

When I went to Florida for my own sanity, that is when I heard from them. They called to curse at me for leaving in the first place and how none of them wanted any responsibility for mom's care. None of them have. All are able bodied, even the boys, the grandchildren, who can't help with yard work or household things. None of them. I am alone.
I somehow have put up this barrier. I feel it. I no longer grieve for my father, I accept it. I don't coddle mom, I do what needs to be done and accept it. Yet, God, there has to be a small miracle somewhere. I am only human.

Mom won't allow outside services to assist. With her dementia, (noticed in long distance phone calls) she would always find something horrible with any service that would assist. Stealing, sneaking around the house, saying unbelievable things to her. I don't know what to do anymore. I am strong, but human. I can't put her in a home, that would surely kill her and myself as this is not even an option. I know, somehow. Has anyone else known this in your heart, a sixth sense? She will not be with me for more than a year. I just know it in my heart.

My parents did a lot for my sisters and grandchildren. More than for me, though it didn't matter. Never hesitant to provide a roof over their heads, money (though not affluent) to assist in whatever may have been needed to make "their" lives more comfortable. And, now they turn their backs. One sister said, "I refuse to be around old people and I hate mom. This is your problem. Good luck." The other married to a real estate mogul and owns more property than God, walked away 23 years ago. The grandchildren, one male 36 lives near the coast only 20 minutes away and doesn't have time because it would interfere with his new girlfriend; the two granddaughter: both married into money and told their husbands their grandparents were deceased. What goes around comes around. But, for me all I ask is a miracle. Just one.

It's 3 am on Sunday and I can't sleep. I've been here two weeks and it feels like a lifetime. I don't look my age, have kept fit and healthy over the years and maybe, that is the small miracle to care for my mother now even without my own medical care or income. But, that won't last long. I don't feel well at all. Mom, we were never close. I was very close to dad. But, she is my mom. She is the only family I have. I just wish God would open a door on so many that have been closed.

Patricia
inflight911@aol.com

11/25/03

The sudden passing of my Father brought not only grief to the family but the instant he was gone the care of my mother was automatically on me. The day after he died we received confirmation of the MRI that indeed my mother was in the latter stages of Alzheimer's. He (my Dad) hadn't educated himself about it at all, nor had he provided health insurance for himself or his wife.

Because I am an only child with 4 daughters of my own, it all fell on me. Funeral, investigating health issues. My mother was absolutely clueless about all the financial matters of their household. Not to mention her speech was constantly stuttering and almost incoherent to the outsider. Her ability to read was questionable. She could barely figure out how to hold a pen, much less still spell her own name.
How she lost that was due to lack of stimulation as we see it now. One must continue to do things when they are difficult in order to maintain the function at all.

My mother's care consisted of adult day care for about 6 months. Fortunately there were two in our town to get assistance. Then there was what to do with her at night. I had to rotate with my eldest daughters and step-son who would spend the night with her. Once when I was there she woke up, went into the bathroom, fell smack into the edge of the shower and I had to rush her to emergency for 16 stitches (her sense of response wasn't working). No hands out to block the fall - just straight down. About a month after that she fell out of bed (while my step-son was sleeping in the other room). After that fall, which had no visible signs of harm, she acted very despondent. There was something wrong and we sure couldn't figure out what it was. I need to add during this 6-month period her speech got so no one could understand what she was trying to say. Her responses were questionable. Did yes mean no and vice versa? Hard to say.

I tried the local support group but felt like I was dealing with a way worse case than anyone else. They were astounded that I was dealing with her on my own. As I was going to say, after the second fall the doctor recommended assisted living. It took a lot of investigating to find one for only $2,000 a month that didn't smell when you walked in! I felt guilty but I had business to tend to. Don't feel guilty - but don't leave them and not go see them - they still need you at least once a week (try for more time if you can).

There's much more of my story. She's almost ready to leave this earth. Her body is shutting down, it's been a long haul for this 81-year-old body. She stays with family now (my daughter or me) to see her into the last days. It is no day at the beach my friend. Have patience and pray till it's gone.

Nancy
nder831ca@aol.com

11/21/03

My 73-year-old mother had been very dependent on my father during their 49-year marriage for companionship. Almost four years ago she had a stroke which left her with impaired vision. This disability attenuated her dependency on my father. Last year my father was diagnosed with a terminal illness which required us to place them in a facility where he was in the nursing home and she was in the assisted living center. He passed away 6 months ago.

During his 14-month illness, there were many people visiting her and my father. When my father died, she became very dependent on my brother. He visited her every day. He recently had a change in employment which does not allow him to visit her every day and she is having a difficult time coping. My sister and brother are the only two adult children who live in the same town as she. She began using her phone to try to contact one of them to inquire when they would come visit her. These phone calls became excessive and when they did not answer the phones, she started insisting the staff contact one of them. When she did not comply with requests to reduce the number of calls, the phone had to be removed from her room.

She refused to watch the television because of her vision problems, she doesn't like listening to music or books on tape, won't become acquainted with any other residents, and won't participate in any facility activities. She suffers from mild dementia and finds most activities too challenging for her to do and nothing seems to hold her interest. She is very insecure which leads to her desire to have one of her adult children with her constantly. She has just recently began walking to the nurse station several times a day with multiple requests including requesting the nurses to call one of her children. She can be very mean when things don't happen to her satisfaction. She has now become such a high-demand patient that the assisted living center staff have suggested that she may need to be moved to the nursing home side. We have taken her to the doctor and she is on anti-depressants and anti-anxiety medicines and nothing seems to help. We are out of ideas and patience and need help with organizations or ideas that can give us guidance. Any ideas?

Andrea
agilkey@woh.rr.com

11/19/03

After reading some of the heart-wrenching stories in this section, I feel guilty for even submitting a story at all. My story isn't that bad; most of my problems stem from my mother's past and its present impact on me and my sisters.

My mother is 86 and lives alone. I arranged to get her agency help through the state. The case workers have come out to her house and arranged for various services to be delivered to her - they will do laundry, bathe her (she is nowhere near needing that kind of help yet, thank God), they will grocery shop for her, etc. Small things for a minimal cost, based on her ability to pay. Of course, I will help her with the finances, if need be, although at present she has more money than I do, despite the fact that she is in a lower-income bracket. She gets my deceased father's pension money and social security and has a small amount in a CD in her bank.

She is VERY hard of hearing. That in and of itself is not so bad maybe, but she loves to talk and has always been one to crave company and conversation. It is such that I can no longer have a decent conversation with her on the phone. She says "huh" constantly, so then I need to repeat myself. No big deal, but patience is in short supply for me. I am alone raising three kids - 16, 13 and 11. Their father walked out five years ago, so I've been on my own with them that long. He is no help at all, and lately has been sending the small support check late. He's a doctor, by the way, yet wouldn't help my mother or anyone else in my family, even if they were on their deathbed.

My mother spent no time with us growing up, yet now we are supposed to care what happens to her. She was chronically depressed, having given up a child out of wedlock when she was in her early 20s. We heard all about this as well as her other sad, tragic tales. I have heard her childhood stories too many times to count: Alcoholic, abusive father who chased the family around with an axe on nights when he was in a drunken rage, her chronic bed wetting which her mother deemed deliberate on her part and called her "Pisser" and hung the urine-soaked bed sheets out for the townsfolk to see.

My mother exploited us when we were growing up by using us as a catharsis for her own psychological pain. She told me and my sisters when we got a bit older (in our early 20s) that she wanted to put poison in our orange juice when we were young children because she was so despairing and depressed. Of course, she said she would poison herself along with us. She told us that when she found out she was pregnant at age 23 by a married man she would stand in front of rushing freight trains to gather up the courage to jump in front of one. She told us her stories, and we were supposed to do what with this knowledge? I am still not sure what was to be accomplished, but I know it caused us guilt, sadness and a feeling of helplessness that we could never, ever make her pain go away or make her happy.

My mother poisoned, figuratively speaking, my childhood and my young life with her toxic stories of sadness and torture.

She literally slept about 75 percent of the time during my sisters' and my childhood. She was asleep after she got us off to school in the morning and she'd be sleeping when we got in at 4:00. She'd awake some nights at 5:00 p.m., some at 6:00 p.m. in time to feed us. She wasn't there for us, yet she wants us to be there for her now. I have to do it but I'm filled with resentment and regret. She would have loved it if I lived at home with her and never married or had children at all. Just lived to keep her company and be her therapist, her sounding board.

Christine
Maud380741@aol.com

11/17/03

My parents moved in with us 4 years ago and my dad who was ill died 3 weeks later. My mom totally depended on me but she was still fairly strong but not driving and I was the cabbie and wore "all the hats."

My mom was always a very strong-willed person who worked her entire life and spent her own money. Problem was she spent more than she made and never saved a dime.

My dad didn't make a lot so there was nothing but her social security.

I am home full time because of a serious spinal problem and so it's all on my husband.

I have two older boys 23 and 29. The oldest is getting married and he is the one who understands and helps me whenever he can.

My husband "escapes" when he comes home from work to the PC room. He is bitter that at this time in our lives it should have been "easier" it's harder than we could have imagined.

My only brother lives in another country and when he lived in the states he still was useless.

My mom is now on oxygen 24/7 and she just suffered a heart attack and needed two stents put in.

She cannot be left alone overnight so now my husband and I just cancelled our second get-away. This is not going well for our 30-year marriage.

We don't have a lot to spend with the new mortgage and caring for my mom and now helping my son with his wedding, but we never have any 'ALONE TIME."

My mom wants me to take her to the movies, out to eat, and when she can walk to shop.

I never talk on the phone and I hardly ever see any friends. They all work and go out at night. I am too exhausted by night time to even think of going. I did push myself a week ago and it felt good to see my old friend.

My husband is very dear but I am angry that he never sits with us and watches TV because he makes the excuse he just doesn't like the same shows.

My mom has the first floor and we have the second so we do have that privacy when I go up at night.

It is very hard to have your parent become "your child." I am 51 and never would believe that this would now be my life. My 23-year-old is home and he has learning problems and has a job he hates and he gives me "a run for my money" but not too bad, but with all the stress combined with my mother it's just too much.

We can't afford nursing or a companion to stay so right now it's just hard and I need to learn how to cope.

Thank you for this site.

Jan from PA
Jan426@aol.com

11/12/03

Hi! I am 39 years old and caring for my 79-year-old mom who is suffering from dementia along with heart conditions and diabetes. I cared for my dad who was a dialysis patient with severe leg problems until his death in 2000. The care for my mom is getting more and more difficult. Recently she hurt her hip and is having pain. I also have 4 children and a hubby. I don't "work" outside the home except as a volunteer running the hot-lunch program at my kids' school. I don't want to give that up because it's my sanity. I spend some time each day on line and would love to hear and chat with others in similar situation who would have an understanding for what I'm dealing with.

El
ellskids5@aol.com

11/6/03

I am 53, caring for my 73-year-old father. My sister is fighting to have him placed in an assisted living facility and take over his finances. I need reliable information to back me up on my theory that seniors live longer and happier in a family setting, preferably in their own home. I am running out of time.

Melissa melissa
valenzuela@sbcglobal.net

11/4/03

My 82-year-old mother has recently come to live with us. In fact, she is building an addition onto our home. While the addition is being built, she is living in a 26-foot travel trailer in our yard. She chose this trailer because she did not want to put too much money into it. Now she dislikes it and who can blame her.

Since my daughter and granddaughter are living with me at this time, I do not have a spare bedroom. The trailer was just for Mom to sleep in. She has the run of the house, but will not take advantage of it. She insists on behaving like a guest.

The major problem we are having with her is her anger. She does not sleep at night, worries incessantly, and chews us up royally just about every morning. She does not remember well and changes her mind constantly. I am going crazy, and actually dread going home from work. This morning I left home early and ate breakfast at a restaurant by myself because she had reamed my husband out first thing and I couldn't face her and then go to work and teach a class full of children.

Sorry, I'm not at the solution stage. I am working on the problem and desperately seeking a support group. Maybe this website will help.
I'll be praying for all you caregivers out there. You're doing the right thing - but that doesn't make it easy.

Andrea
andeebillb@cybertrails.com

10/21/03

I'm 48 years old and married the second time. I have two beautiful daughters who help me on occasion and my husband is very supportive. I care for my mom who is 84 years old. She has dementia. I have two sisters, one out of town and the other 10 houses away. Neither one help me with my mom. I came across this site after looking at a site that was for caregivers. I need this tonight.

I do everything for mom and I don't begrudge her at all. I'm glad she's still with us and in fairly good heath but there are frustrating days. Today, for example. I work full time, 40 hours per week, and am planning to work a part-time job in the evenings just to make ends meet. You see it was thrown in my face by my one sister that I live here rent-free and mom should be my full responsibility. That statement was told to me when I had asked her to help me with my mom, her mom, our mom. So, my husband and I decided to buy the house from my sister. My sister who lives 10 houses away flies to Vegas, goes on cruises, and off to Florida or to visit her daughter in upstate New York,, yet can't find time to spend a few hours to check to see if the women that gave her life is alive, safe and well. Please excuse my bitterness. I'm not that way. Well, maybe I am - but just for tonight.

Thank you for letting me post this and God Bless all of you out there caring for your parents.

RoxyH@aol.com

10/20/03

This is not a story, it's just our life. My husband and I are wondering if we're the only one's who write check after check for both sets of parents who can't make ends meet. We spend about $400 a month to cover gaps in medical, and food, and phone and utilities.

Our parents' decisions weigh into the equation, but it's a moot point. You can't let your parents be cold or hungry, regardless of their poor choices. Some hardships are due to not enough coverage medically and so we cover the dental, or the prescriptions from time to time. We send clothes, yet they are not our dependants. They are still in their own homes, and have their health such that they are in dependant in some sense.

This is money we need to save for us; we have no children and so we worry. But we do it.

Just wondered if we were the only ones who wish our parents would have made better choices.

They didn't send us through school, we both have been on our own since we were 18.

Liz
goconge@aol.com

10/14/03

After living in another part of the state since college, I have moved back to be nearer to my folks. I just turned 50 and am working through many issues at this time. The one I want help with is with my Mom. She was one of the polio victims of the '50 s and couldn't be there for us all the time. I know it hurt her as much as it hurt the rest of us. I built a wall around my feelings and I want to open back up to her again and feel again - the joy or the pain, but just feel.

Thanks for the web site.

Gordon
locke@fanninelectric.com

More caregiver stories