The following are true stories sent in by today's caregivers:
6/26/03
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
Thanks!!
E. DeLay
445 Minnesota St # 190
St. Paul MN 55101
651-282-6398 (weekdays)
612-759-1613 (leave message)Liz DeLay
edelay@state.mn.us
6/24/03
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 friends are now books and other caregivers.
I want to write to honor my sister and to my father who is in late-stage Alzheimer's. Our journey is similar to others I have encountered, the fear, the heart wrenching 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.Melanie
melajessi@aol.com
6/20/03
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.
6/16/03
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.
Nancy
chefnp@aol.com
6/8/03
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?
Lynne
GiltyPages@aol.com
5/31/03
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.Judith
Splendid49@aol.com
5/30/03
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
dcsting2@aol.com
5/20/03
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.Lauralee
Lauralee48@aol.com
5/17/03
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
phem39@optumonline.com
5/13/03
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?
4/12/03
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.
Pamela
FiReX3@aol.com
4/27/03
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 free...no 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.
Tami
villingham@aol.com
4/25/03
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.
Denise
macy520@msn.com
4/22/03
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
Mshellislao@aol.com
4/18/03
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
Charlotte@taurusmay.net
4/17/03
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
malagacove@excite.com
4/16/03
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?
Patty
kntypv@aol.com
6/26/03
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
Thanks!!
E. DeLay
445 Minnesota St # 190
St. Paul MN 55101
651-282-6398 (weekdays)
612-759-1613 (leave message)Liz DeLay
edelay@state.mn.us
6/24/03
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 friends are now books and other caregivers.
I want to write to honor my sister and to my father who is in late-stage Alzheimer's. Our journey is similar to others I have encountered, the fear, the heart wrenching 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.Melanie
melajessi@aol.com
6/20/03
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 go to school part-time. I need to know if anybody knows where I might get some help. 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.
6/16/03
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.
Nancy
chefnp@aol.com
6/8/03
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 health 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?
Lynne
GiltyPages@aol.comHome/About/Support/Join/Caregiver Guide/Helpful Links/Donations
