Caregiver Stories

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

I moved in with my 75-year-old mom two years ago. I sold my house to move in and take care of her or help in anyway I can. Got rid of everything I own but the bare esentials, thinking she was going to share with me.
Her eyesight is very bad but she won't give up driving.
She assured me when I moved in, this would be my home to, but I don't dare move anything or put anything where I want it.

Before I moved in she fell three times, one time almost over the porch rail climbing up in a chair to tie up a plant.
She cried and told me if she had to spend one more night by herself she would go crazy and if I would move in she would put my name on the house deed so it would be mine when she dies. It's old and not worth much and I don't care about her house. Now she says she never said such a thing and I am a liar and goes into tirades saying she will kill herself; got in the car and took off saying she would drive off a bridge, and now saying she will set the blankety blank house on fire.

I am at the end of my rope. She flat refuses to go to a doctor, says she is never going to a doctor again.
I am the only one to care for her but feel I can't take this for years and years. Any help or just someone to talk to appreciated.

Betty
pbk501@yahoo.com

My 80-ish parent's clutter is totally overwhelming! Has always hoarded. Number 1 item is newspapers. In mid-40s, I live with my parent; have a flex work schedule; am very willing to help. However, the clutter leaves no room for a much needed "home." It is more like a warehouse. Desparately need a home office to help manage parent's and my affairs! Clutter results in misplacing or scavenger hunts for papers. Clutter produces dusty air; limits comfortable living arrangements. Prevents anyone from visiting; limits repair people coming in. Parent is 100% RESISTENT to clearing some clutter. All I ask is to start with the newspaper piles, and make some reasonable space for a home office. Why can't it be a compromise? Where do I begin? Am aware of psychological factors. I need some strategies or approaches. Anyone?

ditmars28@aol.com

My mom is 72 and lives 1,000 miles away from me. She is experiencing digestive problems, which she has had her whole life and the symptons of which have escalated as she has aged. She had surgery due to this one year ago, and seemed to be improving, but now has apparently relapsed. The doctors can find nothing else wrong with her other than a "lazy bowel." She feels miserable all the time and her doctors seem unable to offer her any relief. She lives alone, has HMO insurance (Massachusetts-based) and limited help - a few friends and non-immediate family none of whom live very close by. I am financially unable to move back to Massachusetts to assist her and she doesn't feel able due to her health to make a move to where I live. She has some money and lives off her assets. She doesn't want to dip into her principal finances for herself because she wants to save it for an inheritance for me after she's gone, which I insist I don't want. I have only found one organization in her area to assist her.

Lynn Ellington
linpinpin@msn.com

I'm a married, 47-year-old Afro-American female whom had a career in Health Care Finance until my parents both got ill. They're 85 and 79

My days are hectic and I never have time for me. It becomes over whelming when you're the only one they depend on. I live in another city, which is an hour away. I have asked them to move in with me but they're uncooperative, which makes it difficult for me. I gave up my job but had to take on a temp position because bankruptcy was the next option. It's hell when you can't rest without worry.

Theresa E. Brown
ladyt5148@aol.com

Well, this is a short version of a very long story...

My name is Prudence. My Mom has Pick's Disease. This is like Alzheimer's but it effects a different part of the brain and some of the symptoms are different. She is in the latter stages of the disease and is totally dependent and expected not to be alive much longer.

I am the youngest of six children. My brother is the oldest and he lives in Arkansas. Sometimes I am so jealous of him because he lives far from here and he doesn't have to deal with the everyday choices, calls, like we do. There is a lot of hard feelings in my family right now and I don't know where to turn. The next oldest is my sister "Sara" then comes "Mary", "Cathy," Anne" and then myself. My sisters are all very close. They go to dinners together, kids play together, etc. I am not in the same social circle with them. They all have more money and a couple of them don't have children. Only one has small children. Anyway, there is so much tension between them and me. Let's start with some more backgrounds. Sara is a single teacher. Mary is a stay-at-home mom of a 16-year-old and a 13-year-old. Cathy is single and works full time and she lives across the street from my parents. Anne is a stay-at-home mom of a 13-year-old girl (can babysit) a 10-year-old boy and a 4 1/2-year-old boy and a 3-year -old boy.

Me, I love/cherish every minute that I spend with my Mom. Sure I get aggravated with having to drop things to go over there and have to work around schedules even more than I already do. Yeah, I know, I sound like I am feeling sorry for myself. Well, maybe I need to. I cannot find any comfort anywhere else!

My sister's and I have a day/night each day of the week and my aunt has a day a week and we have a full-time caregiver that works from midnight til noon every day except on Sundays when she leaves at 6 a.m. My night is Friday from 10 a.m. til at least 10 p.m. Plus, I am there every other day of the work week to change/move mom. She is supposed to be moved every other hour because she has a bad bed sore on her tailbone. I am the one who has to change that dressing every other day. I am usually there at least 45-50 hours a week compared to my sisters 8 hours.

On my 35th birthday, it was a Friday and NO ONE would switch with me. So , I decided I was going to do my scheduled day and then the afternoons. My sisters get SO angry with me when I won't switch my days with them so they can go out to dinner, etc. I am having friends over Saturday evening for dinner and Mary called to see if I would work Saturday instead of Friday. I told her I could not because I was having friends over and she got mad and wanted to know who! Like, who are you going to go out with that is so important that you can't trade days with me. She got angry and hung up when I stuck with my plans.

I feel like my family is suffering from this and I don't know how to handle it. My family meaning my at-home family. My husband, kids and the house. I don't have time to do the laundry, clean, etc. It has caused a lot of friction between my husband and me. He feels like he and the children need to come first. I do too, but I also feel like my Mom needs me as much as they do. Where do I draw the line?

I have been to the social worker at hospice, a counselor through the archdiocese and now I have come to you because they were not able to help me. The counselor at Hospice told me I had more than what she could help with, the Archdiocese counselor met with me the first time and got all the information and then told me that she didn't have much time to see me because she was going to school full time and had a lot of patients. I don't know where to turn. I would love to talk to someone who knows/understands what I am going through. That is what I need. I don't need the problems solved because they will solve themselves in the end. Just someone who cares would be nice to talk with!

Thank you so much for taking the time to read this.

Prudence
WildcatOne@home.com

My story begins with my parents that live with me. Both of my parents are elderly. My father is 80 years old and my mother is 79. I am the only caregiver that takes care most of the time. Since they live with me, my only two sisters think I need to take care of them. Also, because I am the oldest and single, they feel like I have more time to take care of them because I don't have a husband and family. They feel like I don't need to go anywhere.

My father had always been very healthy until a couple of years ago when his heart started giving him problems. He has a long list of heart complications. About a year and a half ago, they implanted a defibrilator, which is to slow his heart because his heart does not know when to stop. A few months before he had this done we were at the hospital almost every month. Then, when they did this, he is better, but he does have a lot of chest pain and tells me he thinks he needs to go to the hospital, so there we go with him. Recently this past 6 months we have been to the hospital almost every week. It just never ends.

My mother has been a complete shut-in for over 20 years. She is a diabetic and has numerous complications such as high blood pressure, anemia, stomach problems, arthritis and has a very hard time walking. She can only walk with a walker and even then she can only walk very little. She is very unstable and falls quite a bit. A year ago she fell and almost broke her knee and prior to that she had broken her ankle a few years ago and we have such a hard time with her because she is overweight and cannot move very well.

My biggest problem is that I cannot leave them alone for very long. I work every day; I have 9-5 job. In fact, I am a caseworker for a nonprofit agency. If they get sick my sisters call me right away and tell me I need to go the hospital and see what I can do for them. I never have anytime for myself and no one seems to understand that. Everyone tells me how blessed I am to have them both with me and I know that I am blessed but I need a break. I am never able to go out of town anymore. As much as I am tired of it all, I would not change a thing from what the Lord has given, and I thank God for that. I just need to talk to someone who knows what it is like to have their parents live with them all of the time. If any one has any advice or ideas how I can work at leaving them alone without feeling guilty and worrying if they need me and I am not there for them. The guilty feelings is what I have a very hard time dealing with.

C.L. Diaz
CLDiaz804@cs.com

My Mom is 78 and recently diagnosed with Alzheimer's disease. I would say she is in the second stage of the disease. I am her only child. She has become so suspicious and angry that I find myself angry most of the time trying to deal with all the different problems. Most of the time she doesn't know me. Now she sees "other people" in my room. Her doctor gave her medication for the hallucinations, but so far I don't see much improvement. I just feel so frustrated most of the time. The memory loss has been going on for about three years, but the hallucination have appeared recently and seem to be getting worse fast.

Nancy
chefnp@aol.com

My mother had a stroke six years ago and has been hospitalized too many times to count. She was a longtime widow and this year she's been in and out of nursing homes, and back home. This time I cannot seem to manage the daily struggle. It's hard to hear her moan and groan and in pain. I'm at the end of my rope and we're arguing all of the time. She's depressed and has all the health problems anyone can have in their old age, but is very needy. When I come in the door from work, questions begin; can I do this, that and the other thing. This time is different - I don't know what happened but I can't do it anymore.

Paula
muchap@bellatlantic.net

My father, who is 61 years old, was diagnosed with Alzheimer's disease just over 1 year ago. This is very rapidly progressing. I am having a very difficult time with him due to vulgar language, hatefulness, and agitation. I just don't know where else to turn and do not have much time to attend support groups.

Dawn
metoo21475@yahoo.com

My name is Shari and I am 35. My husband and I moved in with parents to help my mom with my father 6 years ago. My dad has had a stroke, heart attack, etc., but is the healthiest "sick man" I have ever met. My mom died unexpectedly due to a doctor error in 1997, leaving me to care for my dad.

In addition, I have four children 9 and under. So, needless to say, I am busy. I have three brothers who think they help, but in reality don't do very much. When they actually manage to do anything, such as take him out to dinner, they are praised to high heaven. But I, who feed him every night, clean up after him and do his laundry get nothing but criticism. From reading your stories, I guess this is how they all are. I seem to spend my life looking for help - drivers, substitute caregivers, etc. It's hard.

Shari
Sfranco619@aol.com

I live in Salem, Oregon and I take care of my 87-year-old mother who has congestive heart failure. I have had her in my home for 8 1/2 years. I do family foster care for her, which allows me to stay home and not have to work so that I can care for her. When she first came to live with me, she was able to do a lot of things for herself, and be quite independent. Now, however, she cannot be left by herself, and requires more daily care and help.

A year ago in August, I separated from my husband because of the stress of trying to be a wife, daughter and caregiver at the same time. We live close together and he is of some help, but the separation has given me much needed peace. However, now that I cannot leave her and have very little support of any kind, I find myself feeling trapped and depressed a lot of the time. I have been looking for a local support group, but have been unsuccessful so far. Also, because I have a very limited income, I cannot afford to pay for anyone to come in to give me some help.

I would like to be able to chat with someone on line if nothing else. If anyone is interested, please contact me at the e-mail address below. Thanks for caring.

Shirl Staats
godsgirlshirl@att.net

At age 43, the sudden loss of my only brother, age 55, was devastating to my Dad, a cancer patient suffering from emphysema, my Mom, in good health physically but suffering from dementia and early Alzheimer's, and me, divorced due to an alcoholic spouse, alone, with multiple health problems trying to work full-time, make ends meet and assist with sick, aging parents long distance.

One year after my brother's death, Dad died. As sole caregiver to Mom, I worked full-time and made two trips per month, driving over 600 miles, to assist her in remaining in her own home. Seven years ago the phone rang at work and a neighbor informed me that Mom had fallen and broken her leg. The break was such that it could only be treated at a major hospital. Therefore, Mom was placed in an ambulance for a three-hour trip to Emory University Hospital, Atlanta, near my home. My life was completely changed at that time and to the present, seven years later. Mom underwent an all-day surgery requiring bone replacement and installation of the stabilizing rod. We were faced with a second major surgery within four weeks in her weakened condition. Our choices were few since the protruding rod had to be replaced. Two weeks later Mom underwent the second surgery and was again released for care and rehab services.

Shortly after, Mom was on her way home to my house. We had been in the hospital scene from early November through February with me using all my vacation and sick leave, working full time, commuting, eating and sleeping mainly at the hospitals and in the car with no family to fill the gaps. Mom made a remarkable recovery. It has been approximately 12 months now and we were looking forward to her being able to return to her home, with assistance. I was making attempts to restore some aspects of my life when, upon returning from the mall with friends, we found Mom in the floor. She had fallen and broken a hip - back to surgery, rehab and in-home care. This time Mom, at age 87, was weakened physically.

Who will take care of Mom while I search for another job? We have lost the services of the caregiver we could afford. It is unlikely at age 62 that employment in the same salary range will be available. How will we afford full-time care for Mom - Hospice does not provide volunteers for these hours. How will I pay COBRA and long-term care premiums and mortgage? What are our options? We would appreciate prayers and direction. Mercy Living - the double life of one caregiver among so many.

Jo Ann H. Woody
jahwoody@juno.com

I have made a promise to my child. I will never, ever make her care for me. I currently care for my boyfriend's father who is 77 years old. He has very little memory problems, but his hearing and sight are not that good. He is cared for only because he won't do anything for himself, including showering. Not that he can't, he just won't.

I take him to his doctors, I change his bed sheets, and I take care of any other things he doesn't want to do. I AM 26 YEARS OLD. Living with him, dealing with his mean, nasty attitude has been so hard on me! I love my boyfriend who is my child's father, but won't marry him until something is done about his dad. I don't want him to just be stuffed anywhere. I have found several nice out-in-the-beautiful-country-setting places for him to look into. He is an alcoholic and has made it very difficult for his son who wants to quit drinking completely. We don't know what to do anymore we are too young to be dealing with this, 26 and 31 years old, but no one seems to be able to help me.

Megan
fustrated@earthlink.net

My mother is 76 and has mild dementia and Alzheimer's. My father is 78 and healthy. I recently put my mother in a nursing home because my father has another woman he is seeing (has been for years) and he does not want to care for my mother any more (so sad). It has really been difficult dealing with all of the emotions of anger towards my dad, and sadness at seeing my mother helpless and declining mentally (she has been and still is an angel). Then there are the financial challenges; my dad is in debt way past sane levels and he has control as long as they are husband and wife. I feel helpless because I do not have the authority to act in my mother's best financial interests unless I have her declared incompetent which is a painful process. Bottom line, it is painful to be in this sandwich generation with parents to take care of and your own family to support. Any comments or stories are appreciated.

Cal
charlesb@pdq.net

My mother died on June 5 of this year after a long time of fighting various illnesses. I (her daughter) took care of her in the home for four years and pulled her through five major operations. It was trying for me and at the end of four years, she had fallen out of her bed and it was at this time that I admitted her into an assisted living facility. She was diagnosed with dementia. At the same time my brother suffered a massive brain aneurysm at age 44 and although he pulled through this crises, he too was admitted into an Alzheimer's facility because he need to be in a secure environment. So mother was admitted into one end of the facility (assisted living) and my brother Steve was at the other end of the same facility (Alzheimer's). Through this year of long term care, I became so frustrated with the level of care that I have now formed an assessment and monitoring company, that provides monthly care giving assessment reports and weekly visits in patients in long term care facilities

I am a 46-year-old African-American single mother. My daughter is 9 years old. My mother is 74, my grandmother is 94 and is in a nursing home. My father passed away 7 years ago and my brother died last year. He was 7 years older than I. Both deaths were sudden and sad.

Two months ago I moved in with my mother. She is in good health, but I can see signs that she is headed for the same depression, isolation and overreaction symptoms that my grandmother has experienced. My grandmother is now in the early stages of Alzheimer's I am afraid for my mother... and myself. I'm good in a crisis, emergency situation -- reacting first, falling apart later -- but, I don't see myself as a long-term caregiver. The reason I moved in with my mother is because my former fiancee was diagnosed with Bipolar Disorder and I knew I could not care for him the rest of my life. He frightened my daughter and I and my mother offered her home to us. That's my story... a new chapter seems to be added every day.

Karen
karen-rheta@webtv.net

My mom is 78 and her only health problem is blindness due to macular degeneration. My dad died 1 1/2 years ago and my husband and I asked Mom to move in with us. We have two daughters ages 7 and 11. I am 37 and my sisters are 58, 47 and my brother is 50. Before my dad died, he tried to talk to us about my mom, saying she is so mean and that he is worried about her. We laughed it off because we heard it from her that he was a pain in the butt and we were just closer to her and basically took her side. After Dad died and she moved in, we got the real deal. Dad was right - NASTY. Now I feel like I have replaced Dad as her target and I am the reason for all her problems just like Dad was. There are three others to help out and PLENTY OF MONEY of my mother's. She wants to be catered to in a way that is just not possible. We cannot talk (never could) and my sisters and brother do not want to hear anything. They feel guilty and there is nothing they can do and that's exactly what they do

Candi
candi317@prodigy.net

My dad is 71 years old and he just retired last year from his job. Now I don't know if he's depressed or he has his own world, because he doesn't wanted to cooperate with me and my mother. When we ask him questions, he never responds, nothing. He has no friends, he stays home everyday and watches his TV (baseball) all the time. My mom and I were trying to help him out, but it seems he doesn't want to help himself. He used to work at the airlines. He can travel if he wants to, but NO all he does is to watch TV EVERY SINGLE DAY! Or sometimes he uses my place to watch upstairs (he and mom are in the downstairs apartment). Everytime he's at my apartment I feel very angry, especially if I wanted to rest and his TV is on, especially after work. I really need help or someone to talk to regarding his behavior, it affects everyone of us in the family. Thank you very much!

Carmen
mcbernati@aol.com

I am 36, married, with 4 small children (all under the age of 8). My mom moved in with us 3 years ago. She is 66, but because of some health problems, cannot do her own shopping, cleaning, or cooking. I shop, cook, and run errands for her and she has someone to come in and clean for her. We moved into a new house together so that my mom could have her privacy and so could we. This was also necessary because she is a very heavy smoker. We bought a house that has a half-basement (we live on a hill so the basement opens into the backyard. It was the best house we could find that would suit our needs, but it was a compromise. My mom doesn't acknowledge that we have made all of these changes for her and can't find a single good thing to say about her living quarters. I am very tired of her complaining about everything. She is just so negative about everything. I have tried to interest her in taking some classes at the senior center, but she always has some excuse as to why she can't go.

m.diblin@att.net

My story is my grandfather is 90 and suffering from dementia. He is going down hill fast. My grandmother is still alive but it is getting harder and harder to take care of him. He has not gotten violent yet.

He is a vet but we are having a hard time finding programs that will help us. My mom has two siblings that do not help out and it is very frustrating to us to keep walking into walls. It also is very hard seeing someone you love turn into a helpless shell of what they use to be. My grandparents are my life; if it weren't for them I wouldn't be here. I want to give back but am at a loss of where to start. Except of course showing up.

Tammy Baxter
tbaxter6@aol.com

To begin with, I am an only child. My mother and father are both 85 years old. My mother is in a wheelchair and my father was doing everything for her (taking her to the bathroom, putting her in bed, dressing her, cooking, washing clothes etc.). My father then had a stroke and it was either enter a rehab center or go into a nursing home. I put him and my mother both in the nursing home. My father then dehydrated two times and is now on a feeding tube going into Alzheimer's (so is my mother). I put them both into the nursing home because I absolutely cannot handle my mother and I really cannot handle my father at this point.

My problem is that I feel so very, very guilty and I just cannot get rid of this feeling. Everytime I visit my insides shake. Everyone tells me that I did the right thing, but like I said I just cannot get rid of the guilt feeling. If there is anyone out there with this same problem I would really appreciate hearing from them.

Rose Foschini
fluffyrose6@aol.com

My story is just beginning. My parents, both 83 and in relatively good health, will be moving into a new home with my family. Where they lived was getting unsafe and they would not consider a retirement home, so living with us was the last option. I was very idealistic when the idea was forming. Then reality set in and I literally had panic attacks from it. I am talking to someone professionally, but it was a sense of relief that I was not alone after finding this web site Once we are "all" moved in I plan to seek out the support meetings.

Ruth Shuttleworth

In April of 1995, my mother passed away. Two months later, my father had quad bypass heart surgery. From there he went down hill.

I was working full time, so I hired someone to sit with my father while I worked. After numerous so-called accidents my father had that resulted in a broken hip, a month later a broken leg, and then a month later broken foot, I had to make a decision on who was going to take care of my father. I made the only decision that I could. I quit my job to stay at home and care for him.

He is 80 now, his health is not good. He had a colostomy 3 months ago and I'm learning how to care for him. I'm at my wits' end. It seems I can find no help in regards to my own health. I can't afford medical insurance, my father and I live on his SSI and a small pension. This does not afford us the luxury of medical insurance for myself. I am in desperate need of medical attention and do not know where to turn.

Pam