Caregiver Stories

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


My aging mother-in-law moved in with my husband, two kids and me three years ago. Her health was declining, but not failing. She was becoming more forgetful, her friends were nervous about driving with her, she didn't t feel that she was getting very good medical care, and we were just plain concerned about how we would help someone 2,000 miles away should something happen.

We have adequate space in our house, so she took over the lower level and led an independent life for the most part. She joined us for dinner most nights unless she had other plans. She made friends quickly and hooked up with the local senior center and church.

We quickly discovered that her health was not as robust as she had led us to believe. She was diagnosed with high blood pressure, congestive heart failure, and other stuff almost right away, stuff her previous doctors had all missed. We learned that she had had a stroke too, which had damaged the parts of her brain involved in perception vital to driving. Within a year she had a pacemaker and had recovered pretty well. Then one year ago she took the big fall, the one we all dread. She landed on our garage floor and fractured a bunch of vertebrae and ended up in the hospital and then in a nursing home for rehab. She spent most of last summer there and that was my initiation to the world of caregiving.

My husband and I became vitally involved in her care. We visited her almost every day. We got to know all of her caregivers and they, us. We talked honestly about our concerns and they helped us realize what changes we would have to make at home. Once she came home it was months before she was able to get out again to church or to join her friends at the senior lunches.

Then a few months ago, she fell again. Only she insisted that everything was fine. Two weeks went by and we realized that her pain level was increasing at an awful rate. Doctors did their tests and she came home with us and cried because the pain was so bad. She was taking lots of long-acting pain meds with lots of pills for break-through pain but nothing was working. Pain was a 15 on a scale of 0 to 10. We finally brought her to the ER and had the luck to be admitted to a wing next to the cancer wing with the pain management specialists available to help her. Once that was under control she was able to come home with us. We were confident that she would recover completely and be back to her old routine in no time at all.

And that is when it all started going downhill. I wonder if the human body just decides that it has had enough. Within the last month she has lost 20 pounds. She has become more frail and tippy. She sleeps so much and won t drink much water. Her doctor recommended that we cancel home care and call in Hospice and they have just gotten started.
It s hard having a whole new group of people getting to know her and to have to deal with schedules again. It s really hard watching this women who is so strong and independent sliding downhill. It s hard to know what to say. Does she know that she is dying? Is it okay to talk with her about it? Am I the first person to worry that my bringing this up will make her feel like she is a burden and want her to die? I sometimes feel very helpless and confused. I don t know if it is my faith or something else, but I know that since I have her best intentions at heart that I probably can t do a whole lot wrong. In the meantime, I'll just muddle through.

And here s what I have learned ..

What's gone wrong? Well, for starters, my husband and I don t always agree on her care. This is a difficult one since I am the primary caregiver and she is his mother! We try to talk it through, but that doesn't t always work.

It is also hard to care for someone who still thinks of herself as an
independent person. Explaining to someone with no short-term memory and very little long-term memory that they need to drink water or wear their oxygen or should let others do laundry and make beds is quite difficult, especially after the 100th time!

I also get upset when she is angry with me for not telling her something. I try to write things down for her to refer to later, but that gets lost. My feelings get hurt easily now. Tears are always welling up inside. I feel like I do so much, and she has no right to be angry with me because of her failing memory.

What have I learned? Well one important thing is to remember that she does not ask me the same question five times in a 10-minute period just because she wants to annoy me! I try to answer each time as if it were the first time she asked. This was the hardest lesson of all. Up until two months ago, I was very impatient if she did not remember. I d say things like: Don t you remember, we talked about this yesterday and not always in the kindest of tones.

Another thing is to remain vitally involved in her care. When she first
moved here, she didn't t always remember what the doctor had said. Once I or my husband began going with her, we understood better what needed to be done and why. We were able to ask the questions that she might not think of. And we were able to ensure that she did what the doctors had suggested.

Another thing we have done is to keep a living document that reflects her current condition. It includes her current medications, problems she has had with discontinued medications, allergies, etc. It also includes her medical history so that any new doctors have an idea of why she is where she is, what s been tried in the past, etc.

I've learned to look at unanticipated/unwelcome changes as blessings. For example, when my husband was laid off two years ago we were quite anxious. We've since realized the gift we've been given in being able to better take care of his mom. I would have been burned out long ago if we weren't t able to share her care. When I am tired, he is there. When he s tired, I take over. Sure it s stressful without his income, but she is able to float the boat of our combined household and we re able to provide her with high-quality care.

I've also learned not to make any changes on a Friday or before a holiday. It takes too long for bureaucracy to get moving on a weekend and care tends to be substandard until the regular staff comes in on Monday. (We've made this mistake twice never again!)

Probably the most important thing is to know when to ask for help. There are support services out there and they usually are not that hard to find. Ask for help. Ask for help. Ask for help!!! At first I felt guilty about it since I could really do everything required. But I do need time to myself. I do need time with my husband and kids. And I do need time to take care of the rest of household. My husband and I go out on a date every Friday night, whether we need it or not, and that does us a world of good.

Sorry this is such a long posting, but I felt like I needed to not only
share my story but also what I've learned.



I am a 45-year-old married woman with a 4-year-old son. My caregiving situation involves the emotional roller coaster I experience while trying to support my mom and dad. My mom is often in the hospital with either heart or kidney problems. This last year she started dialysis and got a defibrillator.

Just recently she returned from the hospital with heart complications related to the device. She wound up having cardiac arrest, but it wasn't God's will for her to leave right now. Thankfully she is in a recovery state (physically), but emotionally she's having a lot of anxiety and fear about another "event" happening. There is truth to that but like any of us, we can't predict the future. As a family we feel stressed out about the "real" episodes as well as trying to help her not anticipate the future. Any suggestions for helping her practically deal with the future? Any suggestions for how we can support her without it consuming our emotional lives?

Pam Bryan


I am a 40-year-old male taking care of my 73-year-old father. He has had 2 strokes and due to the second one he can no longer eat(orally). He had a tube inserted directly to his stomach and that is how we feed him. Luckily i have a sister that helps me with him in the summer months. (she is a physical education coach). But when school starts next month,she will have to return to work. After reading some of the other stories here, I feel kind of blessed that I kind of have it easy. I am happy that I found this web site to know that I am not alone. Taking care of an elderly person is a hard, thankless job, but we all share the extreme love for our parent(s). That we will do what we have
to do to care for them. Thanks for reading my story. Bless you all.

Roger Gutierrez


My mother is in an assisted living facility due to past crises and due to the fact that she was not caring for herself, not seeing doctors, and shutting people out.

Now, every time I call her (I live out-of-state) she talks about wanting to "go home" and not understanding why she can't. She has been diagnosed with bi-polar disorder, has many medical problems, and takes a lot of medications.

I am the one she blames for her current situation. We have decent visits, but phone conversations are usually not good at all. I want to talk to someone who is going through something similar, because I am very stressed about the role I am playing in my mom's life.

She is 81.

Martha Wilder


I am an only child caring for my elderly mother. We have no family in the area and I am searching for other adult only children going through a similar situation.

I would like to share resources, experiences etc. with other only children regarding caregiving. You can e mail me or contact me at the address and phone number listed below


E. DeLay
445 Minnesota St # 190
St. Paul MN 55101
651-282-6398 (weekdays)
612-759-1613 (leave message)

Liz DeLay


Thanks for all the stories. My greatest source of encouragement is from the shared stories of people like US who have struggled through the caregiving process. I never imagined it would be so hard. My best freinds are now books and other caregivers.

I want to write to honor my sister and to my father who is in late-stage Alzheimers.  Our journey is similar to others I have encountered, the fear, the heartwrenching decisions, the family feuds about the choices we face. What makes my sister special is she chronicled one year in which she was caring for my father and her 1-year-old daughter. The book is called The House on Beartown Road, A Memoir of Learning and Forgetting by Elizabeth Cohen. (It is excerpted very nicely in the June 2003 Readers Digest if the book is cost prohibitive.)

I am very proud of my sister for having the courage to journal her story. When I sent her my father from New Mexico as I could no longer care for both my mother with COPD and my two little kids and my father's failing mind, she had just moved to upstate New York in the country with her husband and new baby. Well, her husband leaves immediately and so her memorable winter begins. The parallels she draws as her daughter learns and my father forgets are intriguing. She extrapolates humor at every corner and as the New York Times review and others say, what could have been a scathing self pity party is actually a lovely story of courage, memories and hope. I share this message because it is our story. I have also found there are many recent publications of memoirs from caregivers which provide the readers with perspective that reminds us we are not alone. My father had a PhD in economics and is a Professor Emeritus from NM. This message is honor of him. Thanks for letting me share.



I am a single mother of two. We live with my mother. I recently had to quit my job to take care of my mother. She has a condition called syringomyelia. She is paraplegic and is losing feeling more and more. We were told that Alabama has a program that would pay me to stay home and take care of her and also allow me to goto school part-time. I need to know if anybody knows where I might get some htelp. I am the only child, so there is no one else to help me. My goal is to one day become a nurse, but I cannot do that unless I can find a program to pay me. My mother and I have checked everywhere we can think and we cannot find anything. Please help us.



Hi everyone, I am a 46-year-old woman taking care of my 80-year-old mother who was diagnosed with vascular dementia three years ago. I am her only child. She has three elderly siblings in another state.

Mom has gotten worse in the past year. It's bad enough that she doesn't know who I am most of the time, but she slowly is forgetting how to do even the simplest of tasks. She gets very angry with me and demands to be taken home. She forgets we have always lived together. I feel so frustrated most of the time. The only time I have to myself is when her aide comes for two hours a day, five days a week. Then I try to get to the gym or run errands.

I never leave her alone and don't go anywhere without her. I have seriously been considering placing her in a nursing home. I feel very guilty about this, but I feel I am getting too angry and depressed over the whole situation. I am at my wit's end. Thanks for listening.



I am the only child of an 87-year-old mom who had me at 42. I am divorced with no children.

On 2/6/02, my mom suffered a massive stroke. She went through much hospitalization, rehabs, surgery. It was and is a desperate time. My alleged friends deserted me, cousins vanished. I am at the point of being totally broke.

On3/17/03, my mom had a second, lesser stroke, but one that left her unable to converse. I am her caregiver. We live together. I have a home healyh care woman 5 hours a day. I ABSOLUTLEY will not put my mom in a nursing home She is indifferent to PT/OT/ST. Are there other daughters out there like me?



I live in Chicago and the situation is, my mother is located in Ohio in an assisted living home. She has a problem with falling occasional and then is laid up for about a week. Whenever I try to contact either of my sisters for information about mother, they really don't want to share much information about her. All I would like is the facts, no sarcasm, no anger, just the facts. They are probably resentful that I live out of town, but I do and have a full-time job that I need to be responsible to.

How can we all cooperate in this delicate family situation without causing resentment. All I would like is for my mother to be comfortable, not labeled as being a burden to others. I'm at wit's end on how to handle this.



I have a big problem finding resources and financial help if I bring my parents to move in with my husband and three kids. My daughter goes to college and is away eight months a year. The problem is, I'm on HUD section 8. I have two bedrooms and four people live here. Right now my mom has been caring for my dad who has been disabled by a double amputation. He also had a stroke that left him with no use of one arm and loss speech, although he is very sharp in his mind and communicates very well. His illnesses began 14 years ago. When my father had his stroke the doctors told us to put him in a home and go on with our lives. That was not acceptable. So, my husband and I brought him to live with us because my mom couldn't do it. Eight months later my mom wanted him to come home with her and my two older brothers. She has taken excellent care of him ever since. The last six months we noticed her memory loss. Our doctor diagnosed her with Alzheimer's disease. My heart aches for her. She gave up everything to take care of my dad.

Please send me some leads or advice about what we can do or what agencies to contact. Thank you very much and may God bless.

Colleen Stenglein


I cared for my congenitally multi-handicapped brother-in-law , Ticky, for 25 years. Ticky was totally dependent in all ways. (Cerebral Palsy, no eyes, colostomy, poor communicative skills etc.) We lost little Ticky (real name was Lamar) here at home December 5, 2001. Ticky was 75 when he passed away. Six weeks after Ticky died, my 79-year-old dad passed away. That was January 19, 2002. Next I lost my husband, Bill, for whom I had been caregiver for the last nine years of his life. Bill had a severe stroke in 1994, which left him with expressive aphasia (inability to talk clearly or consistently make thoughts in his brain communicable as well as no fine motor skills in his right hand).

Bill died the same year as dad. Dad died January 19, 2002, Bill died December 8, 2002 and Ticky died December 5, 2001.

My Mother has become somewhat demented. She suffers from macular degeneration as well as having undergone detached retina surgery in both eyes. She walks with a walker but cannot/should not ever walk without someone with her. She's very prone to falls and has broken each hip within the past 2 1/2 years. I don't want mom in a nursing home. She has moved in with me. I love to line dance once or twice a week (for fun) and want to continue going to Curves three times a week for physical exercise. With my husband gone, I need to do outside mowing, upkeep etc. If I leave mom alone & she happens to need to go to the bathroom, she gets up and sometimes falls. I need someone to senior-sit mom for the times I can't be with her. I'm thinking of trying to find a mature, responsible college student to senior-sit and assist mom to the rest room and get her a glass of milk or some cream of wheat should she request it.

Does anyone have any suggestions for how I can find potential "senior sitters/respite sitters? Usually, I need someone for one to four hours intermittently not daily. Any suggestions would be deeply appreciated.

To be truthful, I'm feeling stressed and depressed, but still very much wanting my mother living here with me and not in a nursing home for whatever time she has left here on this earth. I also deeply miss my husband in an often overwhelming way. Grief no different than anyone else who loses their very much loved mate I'm sure. Hope someone replies with some good ideas. Thanking you in advance and God bless.



I am 40 years old and I have been helping take care of my mother for over 10 years. I have been living with her for the last five years. I have two children. One is 15 and the other is 7. I know a lot of people have their stories. My mom has heart disease and has had three strokes that left her paralyzed in a wheel chair.

I help on a daily basis plus I also work. I was just wondering how to cope better with this emotional roller coaster that I am on. She has been in and out of the hospital so many times I can't even count. She has an aid come when I am at work, but the rest of the time I am helping clean and going to the store. When she has her attacks I am the one who calls the ambulance. I am at the point of numbness. She just had mild heart attacks. The doctors can't believe she is still alive.

I was wondering if anyone else feels lost and very alone. If I don't help I feel guilty and then if I do I get so angry sometimes. I never feel at peace anymore. Constant hospital and nursing homes pills and crying with my mom. Some days I feel I just want to run away. She has so many health problems and every time she enters the hospital I don't know if she will come home. But she always does. She has high blood pressure, kidney disease, diabetes and a whole lot more. The problem that I am having now is that when she had her last attack she woke me up out of a dead sleep and I thought she was going to die on me. I can't tell you how many time that has happened to me. I am always afraid and feel lost. I have to worry about my boys and have to work and take care of my mother. I don't know how much more I can take.

If any one is listening I thank you.

Karen Nelson


My mother has Alzheimer's. My husband and I sold our home out of state to come and live with her to assist her. A few weeks after we arrived she had a ruptured abdominal aortic aneurysm, which was repaired. Since surgery she is no longer able to care for herself due to a great decline in her Alzheimer's status. We are selling her home to move to the town near Mom and other family. We are considering setting up a room for her in the new home and hiring additional caregivers for two six-hour shifts. She is currently in a nursing home and will move to another tomorrow. She has limited ability to walk. She is mainly continent and eats well. She has hallucinations. She is sweet and agreeable and is probably unable to wander far. I am aware of the need for vigilant safety measures and a stable, safe and quiet environment. There are financial resources to retrofit a portion of the new house for her needs.

I have a brother and sister in the area who are involved and supportive. Are we crazy to consider this?



My situation is not uncommon from what I hear. I am one of three siblings. I am the youngest and I started living with Mom right after my Father passed. When I moved in Mom was in pretty good health and she is not unhealthy now, just 84 and feeble. She is a little more fragile and she has an enlarged heart and she suffers from macular degeneration.

I gave up my job in July of last year after her second fall. The first time was the year before and she broke her hip. This time she broke her arm and even with a pin in it, it will not fully heal. I hope I will be able to spoil her as long as possible. My heartbreak is my daughter, 11, also grew up in this home. When my Mother passes she has stated she want's the house sold and divided among my brother, sister and I. I have nightmares about having to move out of the house. I don't want my daughter to grow up in some crime-riddled neighborhood. She took out a reverse mortgage and the balance after loan is paid will not cover the pain I will feel leaving the home I have lived in for 38 years. I spoke to an attorney about holding my brother and sister accountable since I have put my life on hold for my Mom. He stated I have no case. I am heartbroken and wonder if anyone can give me advice on what I can do.



Hi, Well I am 33 years old and have been living with my grandmother for 3 years now. I was the only one that was able to move in with her to have a warm body in the house and as her health has been going down I have become her main caregiver. I work full-time and overtime as a pharmacy manager at a busy chain and I have a dog and cat to take care of. She does not require me to do everything for her but I do what she needs. She is on oxygen but can walk to the kitchen and sometimes to the front door.

She has been getting worse and worse over the last year and although you would think I have it made living rent electricity bill or cable. I am feeling more and more drained. I have no life except work and being home. I do travel once or twice a year and do get away for a weekend here and there, but lately it is harder for her to be without someone to be here with her. My aunt and mother live in the same area, my mom right around the corner. My mom comes every weekend and my aunt every other Friday. Her other two daughters come on occasion but never stay more than two or three days. I have tried communicating with them about how sad it is for me, but no one
wants to hear it. They all say well you have it made with your salary and no rent, but I am watching my best friend die and it is killing me. I am so depressed and yet try to be strong for her. She aggravates me so badly sometimes and then I feel so guilty. I have my whole life crammed in this townhouse waiting for her to leave me and when she is gone I don't know what I will do.

I am rambling but I feel lost right now and not sure if what I am feeling is normal. I already suffer with depression but I feel selfish for even feeling these feelings.



My Mom was diagnosed with lung cancer last October. She had a broncosopy and got an infection that led to septic shock.

We almost lost her in December. She had been in the hospital for a week and then needed to go to a nursing home for rehab. She is doing a lot better, but I worry how long this will stay this way. My brother and sister all take days a week to care for Mom. Basically, it is just keeping Mom company. I am looking for a support group down here in Delaware to help me with the stress I am having. I have to drive every weekend to see my Mom in Pennsylvania. I am working four 9-hour days to have Monday off. My days with Mom are Sunday and Monday. I just feel like I can't get the things done that I need to do.

If I stay home I know I will feel guilty. Are there any groups near the Dover Delaware area that you can recommend?

Thank you for your help.



My name is Michele Estanislao and I am taking care of my mother-in-law. She was only 61 years old when she had a full-blown stroke. I was working full-time as a reservationist ticket agent before and I lost my job because we cannot afford to put her in a nursing home (I have to take care of her) since she has only been here in the United States less than three years when she had the stroke and she is not qualified for anything.

If my husband is not in the military maybe I could still get a part-time job so that we can still feed our kids, but my husband is always deployed and we don't have anybody to help us. I was begging for food to some churches so that we could eat. We had a rough time and I am so sad. Since I lost my job I can't get any assistance from the government since we are not qualified for anything including food stamps because we have two vehicles and they have to calculate the value and our vehicle still cost too much (we could not return it because we both neede it). I have four small children and I cannot take them anywhere anymore because it is hard for me to take my mother-in-law and them at the same time. Plus we have money problems and she has right side paralysis and she cannot walk at all. Our marriage is falling apart but my husband asked me to take care of his mom since he cannot turn his back on her and so I am still here taking care of her for more than two years and I still don't know where to ask for a little help financially since I cannot get a job and my kids are getting older (my oldest is only 10 years old, my son is 9 my other daughter is 8 and my youngest is 5). I just hope that some people will understand how hard it is to care for your loved ones without getting any help from anybody. This is my story and thank you for reading.

Michele Estanislao


Hello All, I just found this web site and have already found it to be very helpful.

My story: Well I have had my mother, who is now 87 to be 88 years old soon, living with me for the past 4 1/2 years. On and Off she has done very well. However we have often gone through periods of months at a time where she will develop one sickness/age-related problem or another. She does not have much dementia, thank God, except for very little short term memory. Right now she has been sick on/off since November 2001 with one thing or another. Right now she has been quite ill for about a month,with no resolution of the symptoms yet determined.

I also work full time and the hardest thing for me right now is I am very worn out and tired. Feeling extremely stressed both emotionally and physically. I would like very much to find a support group that I could go to at least once a month, once a week - whatever. I am in counseling which, of course, does help a great deal. My counseling is a combination of spiritual and emotional work. However I do believe it would help me to cope better if I could share with others in a similar situation.

I love my mother dearly and I am committed to see this through as much as humanly possible without resorting to a nursing home.

Thanks for listening.

Charlotte Corley


Oh boy, is this one complicated story. I am a 44-year-old, single woman and my mother, who is nearly 81, is living with me in my house. A number of years ago, she made herself a sharp deal. She promised to help me get my house if I would promise that she could live with me and that I would agree never to send her to a nursing home or assisted living. Being alone and completely naive, I agreed to the deal and got my house.

At the time, my mother was still active and leading her own life. Well, what I never anticipated was that just a couple short years later, she'd have an accident and become partially disabled. She now spends her days sitting in my living room, watching television on a constant basis. She also sleeps in my living room (on a daybed), as she is now unable to climb the stairs, although she threatens to do so (climb the stairs) on a regular basis. This is something that her doctor has prohibited her from doing. I lose a LOT of sleep over this. She is no longer able to drive. She is entirely unable to do anything such as cook or clean. Her balance is extremely bad, and she has a crippled right hand, a side effect of her accident.

My house is very small, so that means that the entire first floor is basically her living space. I can't have company, I can't clean down there because she refuses to allow me to organize and more or less keeps her living space in a state of disarray. She has plastic shopping bags filled with books, bills, etc. piled up all over my living room, tapes her notes and memo reminders to my furniture and, as she is unable to climb the stairs, she hasn't ad a bath in over a year. I do have a woman come in twice a week to give her a body washing, but it often isn't enough. So, needless to say, the living room isn't the most pleasant place to be. I myself am suffering from a progressive neurological disorder, am not married, and must still go out and work full time. I am in a constant state of exhaustion, and often physical pain (a side effect of my illness). As a result of not feeling well myself, and of her not feeling well, we clash.

I have suggested that perhaps it would now be better if she considered assisted living (we have several very nice establishments near us, I have checked them out) Each time I bring it up, she gets indignant, and reminds me of the deal we made, and how if it weren't for her, I wouldn't have my house, etc., etc. In addition, I can relate to the other poster who mentioned that her mother gives away her monthly income to another relative. My mother does the same. She has an adequate pension from my late father, but somehow, she lets it slip away. Her judgment has become impaired, and she has overdrawn at the bank at least six times since January. I will give her credit for this, she does pay some utilities in my house. But no rent.

I worry until I'm almost sick to my stomach each time I must leave her alone to go to work. She is forgetful, and doesn't seem to know how to use the appliances anymore, such as the microwave. I came home from work one day to find the entire house filled with smoke. She had set something on fire while I was gone. My days are becoming more and more unbearable as a result. I'm truly at my wits end. I would like to hear from others who are living a similar situation with an aging parent. Thanks for reading my story.

T. Bailey


My name is patty. My mom has Alzheimer's. My main problem is that I have wanted to move to Kentucky for the longest time. My kids and husband also want to go. I am her only caregiver. There are no neighbors, no other family or church. I would have to take her with me. Problem is she doesn't want to go. We took her down to see how she would react to it for a few days. She changed. That has frightened me about moving her there. I am frightened that she will make it so hard to handle. I have heard that when you take them out of their surroundings they get mean. I don't know if I can handle it. I don't know what to do. I feel like I am 38 years old and I still can't do what I want. Then I feel guilty because it isn't her fault either. How can I go about this move and make it a somewhat easy one for all of us. She can't live by herself. I give her her medications. I make her meals, pay her bills. She doesn't think anything is wrong with her. Oh my, what to do. Any suggestions?


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