Caregiver StoriesThe following are true stories sent in by today's caregivers. 7/8/03 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. Gail 7/8/03 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 7/8/03 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 Roger
Gutierrez 7/6/03 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. Martha
Wilder 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 Liz
DeLay 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
freinds are now books and other caregivers. Melanie 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 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 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. Judith 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 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. Lauralee 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 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 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 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 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 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 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. Charlotte
Corley 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 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 |