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


I am a registered nurse working at a correctional facility in Somerset, PA. My father is now 78 years old and has numerous health problems. I requested a transfer to a prison closer to him to assume the role of primary caregiver. With letters of support from two of his doctors, the Commonwealth of PA "approved" my transfer pending next available opening. That was April 30, 2003. I am now being told that due to the anticipated closing of a prison in Pittsburgh, PA that those employees on the recall list for the prison in Greensburg (which is closest to my father) take priority over my transfer. I obtained a copy of the recall list and found two names on it requesting Greensburg. I have more seniority than both of those nurses put together! There is an opening available now but they have been paying overtime and "holding" it instead of honoring my transfer. I have written to four legislators and the Governor's Office about this, I submitted a complaint to the State Employees Assistance Program where I work and filed a grievance with the union. Is there anything else I can do to make this move possible? Email any suggestions to: Thank you.

Dolly Thieler


My mother is 88 years old. I have three brothers. One lives with my mom. The other two do very little to help. The one that lives with her hasn't worked in over 15 years and he verbally abuses her. They live on her $673 per month Social Security check and what I can manage to give them. Her house is falling apart, her mental and physical conditions are very bad. I was laid off my job about three years ago but I do odd jobs to try to make money to help. I owe over $1,000 on my credit card for her medicine. No matter what I do for her, it is not enough. She calls me at least once a day, sometimes twice, with more needs. My husband resents my giving her money since my brother is there and won't work. Because he is there and not working, I find it difficult to get help for her. She looks to me for all her needs. I have taken her to doctors and she still complains of being sick all the time. I am drained physically and mentally because I don't have the money to meet her needs. My friends don't seem to have any answers and don't enjoy hearing about our problems. Where can I go for help?

Becky Martin


A little over 2 years ago, I lost my job. A couple months after that my rented home was sold out from under me and I moved into my parents' home. Three months later, my live-in boyfriend (who had to move in with someone else due to the sale of our home) broke up with me by email after five years together. Four months after my cat (who was my best friend for over 17 years) had to be put down. Five months after that, my car was totaled, two weeks before my mother passed away. So, you can see, I've really had a rough time these last 2 1/2 years.

Life in this house was difficult enough for me, being that both my parents are/were very domineering and judgmental of others. Since my mother died, my father has become nearly impossible to live with. My mother was my confidant, and she was the glue that held things together and kept my father in check. He is a very loving and giving person in the big ways — giving me a place to live rent-free, giving me money whenever it's absolutely necessary (I try to turn it down, but he insists), but at the same time he's very dominating, judgmental, opinionated, racist, has no class (such as making racist comments in public places where he can be overheard), very poor conversational skills (even though he prides himself on his education in psychology and communication!), and just general everyday discourtesies. He's rude, impolite, and uses his hearing problems to "not hear" people when they're talking to him (I've caught him at it). He lies (white lies, but still lies) when it's to his benefit and everything that happens is always someone else's fault (my mother had that complaint as well), such as his pens missing from his desk after one of my children used his computer, then he finds them right where HE left them in another room.

I'm unemployed, most of my belongings have been in storage for over 2 years, and I'm struggling with what I'm going to do once I do get a job. I'm living in a 10x12' room with a 5-foott-wide closet. I'm crowded to the point of knocking things over if I just turn around. I really need to move out for my own health and well-being, but he doesn't want me to move out, and I'm afraid for him as well. Even though my children are as frustrated with him as I am, they don't spend nearly as much time around him as I do and they constantly berate me for not having more patience with him than I do (they should try dealing with it 24/7 like I do!). If I try to talk to my father about my problems with my children, even if he brought up the subject and I had just spent several minutes listening to him vent, when I start talking, he tunes me out, turns and walks away, or interrupts me by changing the subject. Obviously, from my earlier statements, I can't talk to my children either. As it stands I have no one to talk to — NO ONE! So my anger and frustration just stays bottled up inside and my children and father cannot figure out why I'm so stressed and angry all the time. Believe me, I am trying to cope, but even when I make improvements on my attitude and such, I still get the same amount of grief from my family members for what I'm NOT doing. It makes me want to just give up and quit.

My father is having some problems mentally, but he does not have a medical condition causing it — it's all the medications he's taking. His doctors are still trying to come to a livable balance. The man loves to talk — and talk, and talk, and talk ... but he does little to no listening. Another problem he has is that he cannot talk and do ANYTHING else, so driving, in my opinion, has become a dangerous thing for him to do. But, he insists on doing the driving whenever we go anywhere together — he says he "has to." But, that's the way he is about everything — it's his way or no way. If I do something around the house for him, and I do it my way, he complains about it, saying that he's lived in this house for 27 years and he knows how things should be done here. He controls everything, from conversation to, well, there seems to be no limit —- he is in control, period.

I feel like I'm being watched and judged constantly by him and my children. When I voice a problem with my father, my children say, "Well, he is 72 years old!" and things like, "You shouldn't do things that stress him out" and so on. I'm 48 years old and have my own set of medical problems — high blood pressure, IBS, and genital herpes (a present from my ex-husband), all of which react to stress. Living with my father is stressful enough, but my entire family seems to be ignoring MY health problems, and causing me stress seems to be of no concern to any of them, as long as I don't stress out anyone else, everything's hunky-dory. That attitude alone causes it's own stress on me — the fact that no one in my family seems to care what effect THEY have on ME and MY health! I'm at my wit's end. I don't want to spend my father's remaining years being in constant discord with my father — besides, after he's gone, I'll have to live with my children remembering and reminding me how "bad" I treated my father. He even said to me once that if anyone had to live with and take care of him, he wanted it to be me rather than either of my daughters, because he was afraid they would be mean to him. That says alot!

I just don't know how to handle the situation. I love my father dearly, but I love myself, too. I'll probably still be around for a long time after he's gone and I need to protect myself, but my children see that as being selfish. I've taken to staying in my room with my door closed most of the time out of self-preservation, and I get chastised for that, too!

It all almost makes me wish he would just hurry up and pass away so I can be saved from all the problems and heartache, and those thoughts are distressing me as well — I don't want to think like those thoughts — it's wrong, and I really DON'T want him to die! I just can't take the stress anymore. My own health is failing because of it. I've even thought of suicide as an escape, but my religious beliefs would prohibit it even if I really wanted it, which I don't. But, I do now understand why people do it — I know first-hand what it feels like to have no hope for positive change. The Serenity Prayer does not even apply — I can't accept or change anything — I feel like I'm sinking and there's no help for it. All I can do is live one day at a time and keep on hoping, which is all I seem to do. I can't even see a tunnel, much less a light at the end of it — I feel like I'm in a timeless void and that this is how the rest of my life is going to be spent. I feel there is no hope left.

Donna Reynolds


I am feeling very frustrated right now and would really appreciate some feedback.

I have been with a wonderful man for almost 5 years. We have been engaged for over two. He is an only child (45) of elderly parents, ages 83 and 84. Mom has had Parkinson's for years and dad has taken full care of her in their own home, about four miles from our home. She is wheelchair-bound and unable to do anything for herself. Things started to come apart back in May 2004.

Dad passed out in the basement and ended up being taken by helicopter to Pennsylvania Hospital. I took several days off from my job to take care of mom's needs; dad was then sent to a rehab facility and we were able to get mom in there — they spent a month there but then insisted on going home, on our condition that they hire full-time help. To make a long story short, their private caregiver is not reliable and my father-in-law refuses to see this, always making excuses for her because she gets along with mom. In the past three weeks, she has not been there at least a week of the time (without calling), and he won't call me and tell me he needs help. Three weeks ago mom fell while he was moving her into her wheelchair and he fell on top of her. Instead of calling 911, he got into his car at 10:00 p.m., leaving her on the floor, and DROVE to our house (he couldn't get us on the phone). We weren't home and when he drove home was in a car accident.

My step-daughter went to see her grandparents yesterday and came home to tell me that once again the nurse had not come. I then went over to put mom to bed. We noticed as we pulled in the driveway that dad's car had a broken rear taillight and the bumper was crushed. He had hit the car across the street while backing out of the driveway. What my fiancé neglected to tell me was that his father admitted to it being a hit and run. I found that out this morning when I went over, before work, to get mom out of bed as the nurse didn't show up again! Dad is failing very quickly — I see it plain as day but my fiancé refuses to see it. He should not be driving a car, and yet his son is allowing this!

Here is the biggest problem: My fiancé’s refusal to accept what is going on over there. One or both of them are going to end up dead, very tragically, I'm afraid, if there is not some kind of intervention, and quickly. He is in so much denial over this, and yet I know he would be crushed if something happened that he could have prevented. Has anyone else had to deal with someone who wouldn't face up to their parents' illnesses and who is being left handling all of it? I love them all and could never refuse to help, but I need him to see the light.



I am the youngest of three children and the job of putting my mother (81 years old) in a care facility has landed on my shoulders. She has been showing signs of dementia now for probably five years. Her fourth husband, age 86, recently filed for divorce because he could not handle her behaviors anymore. She has a history of being hard to deal with and now with the dementia it has increased substantially (anger, paranoia, delusions, aggressive behavior). Her oldest daughter has had no contact with her for 35 years and wants no part of her. Her next oldest, a son, hasn't seen her in three years but did call her occasionally and then myself, who usually visited a few times a year and called fairly often.

I was given advice from a senior care caseworker to start pursuing guardianship of her, which I did. However, she lived in another state and after hiring an attorney in her state and starting the legal action, I was told it would "probably" transfer. After a couple plane trips to deal with her move and the guardianship matter, not to mention retainers for three attorneys (original attorney, guardian ad lit um, and an attorney hired by the guardian ad lit um to handle her divorce), I moved her to the city and state where I reside. Now I get information from the original attorney that the guardianship will not transfer to my state and I'll have to contact another attorney here to proceed. In my state they require an original attorney, a doctor, a LPC and a guardian ad lit um all with healthy retainers.

My mother has always had a fear of nursing homes and often said she would kill herself before she ever was put in one. So, I found a lovely assisted living facility where she had her own apartment. She lasted two days and was then sent to an elder mental hospital to assess her behavior and get her on medications that would help control her behaviors. While there she got pneumonia. It was treated, her behaviors were under control and she was discharged to a structured Alzheimer's home which they had "recommended." Come to find out her pneumonia was not gone and she declined rapidly and ended up in a hospital for eight days. The doctor told me she had aspiration pneumonia. I did some research and found out the anti psychotic medication she is taking can and probably did cause her aspiration pneumonia. From there she went to a nursing home acute care unit and then transferred to their Alzheimer's unit. This is five moves and $35,000 in two months.

My dilemma: She needs to be on the anti psychotic medications to keep her behavior in check (sort of) or she gets "discharged" from the nursing home. She was on thickened liquids to help keep her from aspirating. So then she won't drink at all and gets dehydrated. I signed a waiver to let her have regular liquids. She has declined tremendously in the last two months through this ordeal by the way. I visited her yesterday and she didn't look at all well. They assess her and think she is getting pneumonia again and what do I want to do, call the doctor and again treat the pneumonia if they can, put her on comfort measures and let the good Lord decide, take her off the anti psychotic medications so she won't get the aspiration pneumonia but then get kicked out of the nursing home and end up in a state-run mental hospital where they'll put her on anti psychotic medications. What do I do? I need some advice here. If I have them treat the pneumonia she'll just keep getting pneumonia and eventually antibiotics won't work and she die.



I am a corporate gerontologist who is also a professional speaker. My story is somewhat a dificult one. I am a 56-year-old professional who was abused as a child by both parents. The abuse was very much physical and emotional and many times it was my (now) husband that literally saved my life.

My issue now is also a request. On July 7th I was highlighted in an interview with The Christian Science Monitor talking about the fact that I was abused and now I am taking care of the parent that abused me. This, as you can imagine, is the most difficult of all situations.

My request on this list is to search out for any one who may have been in my position as a child and is now facing the same problem: forgiveness vs. forgetness. I am writing a book on this subject. Initally, I was not going to go outside myself for the information, but many of my colleagues convinced me it was the best to get the most approaches and solutions I could from others who have been in my situation.

I would appreciate any help from you and your members to email me at If anyone wishes to view the interview, I can forward it on and they can learn more about me at I am thanking you in advance. I can also be called at 631-754-6666.

Ellen Eichelbaum
Northport, New York


I am at my wit's end! I moved next door to my mom and dad eight years ago, to take care of them. I have three older sisters, but only one of them, who lives out of state, lends a helping hand.

My Father died one year ago, Aril 8, 2003. He was always in control of their finances, and mom and dad were married for 64 years. Mom has many health problems: CHF, HBP, pulmonary hypertension, depression, benign brain tumor, and Alzheimer’s. She is also on oxygen 24/7, and a nebulizer treatment four times a day.

I became burned out after dad died. Mom’s demands are great, and I have Lupus, fibromyalgia, chronic fatigue syndrome, and migraine headaches. So, we had to hire outside help, 24/7, to come in to help take care of mom. This is costing a small fortune! About $3,000 a week!

Mom is out of control. She order things from QVC all the time, things she really doesn't need! Dad left her with his stock, which is now down to $50,000! If we are lucky, this will last until January: then what? I have researched legal options, and found out that we can get legal guardianship over her. Then, we could place her in a very nice assisted care living home.

But, my sisters are causing mass confusion about this! Just two weeks ago, mom maxed out her credit card! I have no answers, but I just needed to vent. If anyone would like to email me, I'd love to hear from you.



I have been caregiver to my dad since November 28, 2003. He moved into my home with my husband and me. He lived three hours from us. Due to his abuse, I had not seen him since I was 13 years old and I am now 45. I took him into my home believing it was the right thing to do. He is 70 years old, a diabetic with many complications; he is in wheelchair; his vision is poor; he is in renal failure, and has severe upper and lower neurothopy.

He is a hard person to get along with. I have been doing this alone for eight months now and I am emotionally drained and exhausted. My siblings want nothing to do with him. He is very mean man and he always has been. He continuously curses me out and I do everything for him, from cooking to cleaning him, doing his laundry and transporting him all over. I made my home handicapped accessible for him. I have gone way beyond for this man and now, I the caregiver, am very ill. My home is not happy and I do not want to be in it anymore. He has said some really awful things. I am at my wit’s end here. No matter what I do to please him, I am called dirt. Those are not the words he uses. He uses very bad words and my heart is crushed.

He abused me physically as a child and here is his abusing me again and yet I still try to take care of him. But my patience is running thin. I cannot do this much longer. Any help I find he says no to. He has been in my house eight months and I haven’t had a break. Maybe this is not what you had in mind when it said submit story, but this is my story. This man has done some very cruel things to people in the past and he still tries to. Years ago, if they had domestic violence and child abuse laws, he would have been put away. But he was not. Anyhow, I felt I was doing God’s work taking him in and now I am very hurt and sad.



My story isn't any easier or harder than anyone else's. I am trying to come to terms with my mother's aging issues and behaviors, and to continue to be a loving daughter and to have some peace.

When my mother does her compulsive behaviors that endanger her safety, I have to wonder if all the medical advances that extend one's life have not sabotaged quality of life.

When my mother withdraws more and more from life, and I try to keep her interested--even keep her awake--I wonder if I am thwarting a natural process of aging, which is withdrawal and detachment. I wonder if I should just let aging follow its natural course.

When my mother is aggressive or mean, I do what anyone else would do in the face of aggression: I withdraw or snap back. I tell her what I am doing and why. I tell her if/when/why I am angry. I just try to make it a rational and predictable situation--so that each of us knows where we stand and what the consequences are.

I am not always sweet, but I try to stay calm. (When she comes in to my kitchen half-naked, I firmly turn her around and say she cannot come in without being dressed.) My 23-year-old daughter IS kind and reassuring. She states that Gramma is terrified of losing her mind, as indeed she is. We should regard her behavior as that of a person who is terrified of something that is truly terrifying.

As someone becomes more and more irrational, living with them can be chaotic and irrational. You just don't know what your aging parent will do next. You cannot anticipate the next event. Safety slips away because my mother has such poor judgment now, and she does things that endanger her. (I find it exhausting to try to think for her, for my disabled son, and for myself, all at the same time!) She doesn't understand her limits; she doesn't understand about safe handling of food; she doesn't understand about balance or spills making for a slippery surface. She doesn't seem to understand the necessity of personal hygiene practices. The hand-washing, the fungal infections, the falls, the spoiled food are all nothing to her--unimportant. It is actually hard to know what is important to her any more. The garbage is important lately, as is corralling the cat. Oh, and having a bowel movement every day is a priority! Mom seems to have lost her ability to set priorities.

My mother is in her own handicap-accessible suite, added on to our home just one year ago. We are not monitoring her every minute, though we are in to see her and bring her food and beverage several times a day. And she is still able to come into the house at will. She sleeps most of the time. When we take her out for a drive, it seems to disorient her even more. She prefers her circumscribed space/activities. She watches a cooking show on TV--though she seems unable to manipulate the remote control or understand the meaning of the buttons any more. We help her turn the TV off and on. She has a phone but doesn't want to talk to anyone, and seems not to hear when the phone rings.

Mom is too stubborn to take anybody else's word for how she should enhance her safety or live her life. She won't listen to or see a doctor. She won't take the antidepressants prescribed for her. She won't take care of her fungal infections. She has diminished sight, smell and hearing. She only drinks soda and coffee--refusing water--and only wants to eat sweets. She cannot eat many things due to poor dentition, which she has given up trying to remediate.

We have decided not to force her. We come back to her for days in a row, offering to help her shower and wash her hair. It takes many days to wear her down about showering/hair-washing. It is my understanding that even in a nursing home, you cannot force someone to bathe if they resist. My 23-year-old daughter is so good at coaxing/cajoling that Gramma usually gives in to her--eventually.

I have taken a new job for the fall, and she will be left alone in the house for 4 to 6-hour periods of time. I don't know if it will work. She panics when she cannot find anyone at home. She hollers as if we have no business leaving/no right to leave the house!

I hope to keep on as long as I can. A home health aide is next, perhaps. Unless she takes another debilitating fall that puts her into the hospital/rehab. Those are very real possibilities. I try to keep them on the back burner of my mind, but mainly we live one day at a time.



Hello, my is Jacqueline and I take care of my mother. She had stroke in 1998. Although I have been takeing care of my mother for over 15 years, this year she changed. She is more aggressive now and she has the early stages of Alzheimer’s. When she first had the stroke, I had to learn how to help her rehabilitation with the therapist. That was a big step for her and me. She had to learn to walk all over again. She still cannot use the right-side hand.

I also have two schizophrenic brothers. I was taking care of both of them for a while along with my mother. I had to make sure that I gave them all their meds and I took them to their doctors. I did have other sisters and brothers but they weren't able to help me. It got very bad with one of my schizophrenic brothers because he was combative with me and every one else. We had to put him in a group home. Now I still take care of my mother and one of my brothers. The brother I take care of now is not combative, he just doesn’t like to take his meds and he won’t go to his appointments unless I go with him.

Now my mother is slipping slowly and I am doing the best I can for her. She goes to a senior day program two times a week and that helps a lot. I have never had a chance to take a vacation because there’s no one to care for my mother or brother. I keep on holding on because they need someone to help them and that’s what I am going to do. I know it can be hard on a person when you have to order supplies and meds then pick them up plus cook clean and do the laundry with no help at all.

I also took care of my older brother’s children for six years. I was a foster parent and I had three children of my on and all this was during the years 1986 to1992. While I was taking care of my two nephews I had to take them to see a counselor. I chose to be a foster parent was because their mother passed away very young and my oldest brother was not emotionally prepared, so he asked me to step in and I did just that. Hey what is family for? It’s sure not to turn your back on one when he or she needs help. Do you know what I mean?

The only reason I am writing this story is because some people need to know that even though things seem bad, they’re not. Even though you may not have help with your parent or family member or members, be strong and look for help. You can always find an agency to help you like CAPS.

Jacqueline Lee


I am my father,s caregiver. We live in his home of 39 years, which is in dire need of repairs. What little money he had is "quickly" dwindling, yet he receives his Social Security.

I quit my job of 15 years and moved back home to care for my parents. My mother had a stroke in 1999, so dad was the caregiver as I commuted back and forth from Houston to Dallas to care for both of them. I am an only child, almost 50. After I moved here, dad fell and broke his back. I moved them into an assisted living facility, got the house cleaned and ready to sell, and then they ran out out of money, so the folks moved back home.

I used my 401k to get us through last year, the car payments and Cobra insurance for myself, which will stop in two months. I am just living minute by minute.

My mother passed last November (after 52 years of marriage to my father). My father is 80 years old. He is blind in one eye, losing sight in the other and his hearing is going quickly. He has multiple myeloma, osteoporosis, and a broken back once. He was 6 feet, 4 inches and now he may be 5 feet, 3 inches. He needs a walker and can hardly walk. We are both afraid he will fall down. Someone has to be here 24/7.I feel guilty and nervous each time I run to the store.

I guess my main concerns are that the money is running out, the house is falling apart, and I have a car payments, and living expenses like food and& utilities. I need to get a job but what do I do with dad? Are there any other options or avenues of additional assistance for my father that we have not thought of? Is there any assistance for me, to help with the finances of everything involved being the caregiver for my father?

I just found this web site today. I am thankful and I would appreciate any advice or information that can help us get through this. I have not found a solution and I am asking for help. I am at my wits' end. I just don't know what to do. Working on depression after five years of care giving.

Emily Hershey-Philp


My mother has had two strokes since July 2003. I live 3 1/2 hours away from her and have been going home for seven months to help care for her, since I took her out of the nursing home in January 2004. My youngest brother has been taking care of her these past seven months and now is burned out and wants to return home with his family out of town.

I lost my job December 31, 2003 and had been in the dental profession for 22 years. Therefore, this allows me to assist my mother with her care, her bills, her doctor appointments, monitoring her prescriptions and just being the contact person for her other health care professionals: occupational therapist, physical therapist, nurse, etc.

I am planning to move my mother in with me and my husband by September 1, 2004. I am already tired from going back and forth to help care for my mother. I don't agree with my five siblings who want me to put her back in a nursing home.

I know I am used to working and having a salary and it has been uncomfortable for me not to have money these past seven months. I am looking into starting my own business at home, but I haven't gotten that together yet.

I feel all Long distance caregivers, in-home caregivers, and/or children taking care of elderly parents need to just have someone to talk to during the time they are caring for a loved one, whether disabled or elderly, especially when they are disabled and depending on you totally. It has its ups and downs and can wear you out.

I think it's important to have help and take breaks for yourself. I have seven siblings and several of them cannot help with my mother's care. My brother and I need them to help and have asked several times.

This is why I am bring my mother to live with me, because driving back and forth 3 1/2 hours is wearing me out, and I feel having her here with me will be much better. I know it will be difficult at times, but I'm willing to have the challenge and I want my mother comfortable and to cherish our times together in home and not at a nursing home.

I never dreamed that I'd be unemployed, taking care of my disabled mother and doing what I am doing, but deep inside, I know I am doing the right thing. I thank God for my mother, she took time to care for me, my siblings, our children and my dad before he died of cancer in 1986. How much more can I do for her now? A lot goes on in a day of caring for my mother: cooking, cleaning, helping her up and down, dressing her, bathing her; there's hardly any time for myself until around 1 a.m. every day; then she's up at least twice in the night. It's real work, not a vacation at all.

Evon Boykins Stallworth


I am 48 years old with a full-time job. I live five hours away from my mother, who is 77. She lives with her sister, who is 84, and next door in the duplex to her other two sisters, 81 and 85.
I guess since my mom has her family (there are five of us), her sisters don't want her around anymore. She still drives, but we are trying to take the car away as she has had three accidents; the last she said she had a diabetic reaction and hit the neighbor's fence. My parents are divorced and don't get along. I guess my problem is that my siblings can't help for one reason or another and I definitely have to find my mother a place to live. She won't move in with any of us (we've tried for years) and says she needs to stay near my younger sister who lives in an assisted living facility (mentally retarded/schizophrenic). My dad has tried to help her but, of course, she isn't listening. Even my dad says it is up to me!

What I guess my problem is, is that we found two places for my mom to look at (my dad found them), but she won't go by herself to look. I'm not sure what I have to do to help her move. Are there social workers that could help? Do I have to go there and help her? (I know that sounds like I don't want to; I just have to take time off from work and it will be without pay.)

I don't know ... I guess I'm just frustrated because I know I have to go and help her and I know she won't want to listen anyway.

Thanks for listening.

Susan Rapp

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