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

3/26/06

After reading some of the other stories here, I know how blessed I am and really have no right to complain. I just feel so lost and ALONE so often these days. I still have both my parents (dad is 88 and mom is 86).

My world and theirs changed abruptly last December 28 when mom had a second stroke. The doctor told my dad she wouldn’t live through the night. I am the youngest of five and felt compelled to go to them. Mom did survive with no paralysis, can speak well, feed herself, dress herself (mostly), but cannot yet walk. She is on oxygen 24/7 and has diabetes, congestive heart failure and atrial fib.

Dad has had three hip replacements, two knee replacements, has had osteoporosis for years ( he was a strapping handsome man 6"4" 230 pounds and now he is 5'10" and 160 pounds). After it was clear that mom would survive, my brothers and sister and I started talking about what to do, since they (my folks) lived in Arizona in their own home and none of us lived nearby except for the oldest brother who suffers from manic depression. The decision was made to move them out here next door to me (there was a rental available), so they have been here since the first of February and we do have home health care in place, but the custodial care has been days only with me taking up the rest of the time, literally living in their home with them each night. It is taking its toll and I plan to get some overnight help as soon as I can.

I never knew how hard it would be and I know it could be so much worse. My dad is still sharp mentally and still can walk (albeit very shakily) with a walker. Mom has a good attitude but suffers a lot from short-term memory loss, which is frustrating to her and me. I just don’t seem to feel as though I'm being very compassionate with them at times and its not fair to them. They are coping the best they can.

I think because I have no partner in my life and my only child (daughter age 19) is living with her boyfriend (age 34, another story altogether there) it hits me harder than most. I just feel so resentful at times and that is the last thing I want to feel or give off that vibe. I haven’t even had time to find a support group that I could get to for mom, much less myself. It doesn’t help that they don't have any friends here yet either as they are both very social people. We have looked at the senior centers that they would be able to get to, and hopefully soon we will have that in place.

My only sister (my other sister died 10 years ago from melanoma) has ovarian cancer and I also try to help her get to her appointments when I can. I live in a constant state of being overwhelmed and the fear that I will get sick sometimes drives me mad. I know I have to get help (support) soon. Thanks for letting me vent

Stacy
teachpeace2all@HOTMAIL.COM

3/17/06

Cooking eggs used to be a simple affair — over easy, scrambled, hard or soft boiled.

I'd cook them as ordered until Mom,79, said, "You don't know how to do it right."

According to Mom, I cook them chewy. When I informed her that my teacher was her, she could only quip, "I did a rotten job, just like the eggs."

Dad,86, (a stroke victim who recently had his feeding tube removed), wants his soft-boiled in an eggcup with the shell perfectly cut, the yolk not runny, not done.

Emil,91, (recuperating from a heart attack), my husband’s Dad, wants his hard-boiled. Ten minutes exactly or he'll say "These eggs are not right" and tap his watch and add, "Not long enough."

So how does my Mom like her eggs? That's the problem because she won't tell me! She always says "just cook whatever is easiest for you dear."

My favorite egg eater is Barbara, 84, (suffering from Alzheimer’s) my husband’s mother, who never tells me how to cook. She likes me to spoon the eggs into her mouth. She is happy as a tweeting, baby bird. At breakfast, I love her most of all.

Barbara Lackovic
B2Lackovic@aol.com

3/15/06

My dad passed away at 85 last January. Since then my mom has not been able to cope at all. She asks that I'm there every day off. I also spent both my vacations with her (one week to help her move since she sold her house). She calls my house all day but doesn't leave a message, and when I answer, she asks if I have been out.

She is still miserable with missing my dad, and her old house; she will not socialize with anyone. She calls anyone but her children "those people." She has discontinued her newspaper subscription and will not connect a TV. She is having a much-needed knee replacement and hopefully something for her eyesight. I feel happier to be at work as to not hear more crying and misery, but the guilt is terrible. Any idea?

Dagmar Hemp
dagmarhemp@aol.com

3/8/06

Today the weight of the world just crashed on my shoulders and I don't know if I will be able to carry the load. As I type this, tears have been streaming down my face for the past two hours and I just can't seem to pull it together. I work full time as a counselor in the Department of Corrections but today I need the counsel.

I am the single parent of a 12-year-old daughter and a 4-year-old son. My son was diagnosed with a heart condition at birth but giving thanks to God, he no longer needs medication and appears to be quite healthy. My daughter is in the tween years and just coping with her attitude is draining on a daily basis. If we are not arguing then we are just mad at each other. I recently found a letter in her trashcan which she stated in capital letters that I am not her mother and she hates me.

In addition to this, my mother, who is 66 years old, moved in with me exactly three years ago after she became completely bedridden due to late stage diagnosis of MS. I am her primary caregiver, even though I am not the only child. I have an older sister who raised her daughter to adulthood and she has moved out of my sister's house and I have a younger sister who is married but has no children. My mother was the second oldest daughter of 13 children by my grandparents and 11 are still living.

My mother receives services from the Philadelphia Corporation for Aging and gets an assistant to come in three times a week for 2 hours. My older sister and younger sister come by once a week to "assist" but the second they walk out the door, I still have to do the major work. Her brothers and sisters rarely come by to give a hand, or even call me to ask me if I need anything. Since I am the sole provider in the household, I MUST work and I just barely make my paycheck stretch from one week to the next.

I am tired and this is the first time in the 3 years that I broke down like this. My mother has a horrible attitude and she suffers from mental illness. She has not been formally diagnosed with major depression, but she has suffered from it all her life. I remember growing up, her excuse for not working, not being involved in our lives and generally being emotionally distant was because "my mind not on it". When I went to college and studied psychology, that's when I realized that she had depression. I have taken her verbal abuse, insults, downgrades and hostility for the past 3 years but always aware of her condition and she was striking out at me because I was the easy target. However, when she talks to everyone else she is as sweet as sugar. But when she called me a "goddamned thief" this past weekend, I could no longer take it. How can I steal from someone that has nothing? Why is she continually biting the hand that provides? I literally wanted to just walk away from my entire life and to disappear from society and all my burdens. I know that there are individuals who are doing much worse than I am but today, I have the poor me syndrome and I just can't seem to shake it.

Right now I am trying to collect my facade together so that I can provide the services that I have been hired to do so in a few moments, I will take a deep breath, dry my tears and go into the bathroom and splash cold water on my face but right now, I will cry three years worth of frustration until my soul is cleansed.

Thanks for just listening.

Verna
nubiansweet@aol.com

2/17/06

I don't know if anyone will read this, but I have to put it somewhere. My mother is 76. On September 9, 2005, she fell in the bathroom and suffered a subdural hematoma (bleeding in the brain). She has not been out of an institution since then.

She was doing very well in rehabilitation until right after New Year's, when she developed pneumonia. After three hospital admissions, it was discovered that she has a severe infection in her chest wall. The infection was drained, but it has left her extremely weak and permanently impaired. All her progress disappeared. It is unlikely that she will walk, eat, or carry on a meaningful conversation ever again.

It's a very long story, but I feel completely drained and very, very sad. I've been driving at least 600 miles each week to stay on top of her care and keep my job. My only goal was to bring her to my home so I could care for her and give her some peace in the knowledge that she was with people who loved her. That will never happen now. The probable course of events is that the infection will recur, she will grow progressively weaker, and eventually it will kill her. That could take six days or six years, but however long it takes, she will suffer.

My family and I are constantly faced with the cycle of hospital admissions, discharges, and subsequent placements. We have found the entire system of hospital social workers, patient advocates, and others in the "helping professions" to be both useless and annoying. At least in our experience, there is no support system for the families. You are completely on your own. Today, the cardio-thoracic surgeon removed a drainage catheter from my mother's chest. He wished us well. His relief at being able to walk away from this case was palpable.

Joyce
jdmcginnis@comcast.net

2/11/06

I am a 51 years old daughter and last year I moved my widowed father (age 78) 300 miles to the city I live, in an ambulance, against his will. He survived a gall stone lodged in his common bile duct, which in turn burned up his pancreas. After 11 months of hospital to rehab, to my house, to hospital, to rehab, he made it to an assisted living facility. During this ordeal he also developed heart problems, suffered a stroke, and had extensive surgery for gall stones. Long story short, I planned his funeral three times during this crisis.

Adjusting to a dependent life has been difficult for him. He hates assisted living, but will not consider looking at other facilities. In his words, "I'm being held here against my will, sentenced to die." He has a quick temper, and openly vents his anger at me. He has a host of younger sisters; most have been supportive of me. However, there is one who criticizes my decisions and tells this to my father. Coincidently, she is the only one who has not visited me and seen her brother during his illness. Naturally, she is the one he hears.

I think I understand many of his feelings and I think I have been very tolerant of his behavior toward me. Only once have I reciprocated an angry outburst with one of my own. I informed him that I would no longer try to avoid making him mad, I would be upfront and candid. However, I still spend much of my time thinking about MY awful situation and how to protect him.

Physically, my father is doing quite well and could be living in a facility for many years. I've got many more battles to face and decisions to make and I pray that I can provide the best life for him, myself, and my family.

Ann
jdlyndon@comcast.net

1/20/06

I am a young mother of two and I take care of my elderly mother. I have older siblings but they are no help at all. My father passed about 3 years ago, we were very close. It’s always been harder to be close with my mom.

Anyway, she lives in a retirement community and at first was doing very well there. I do my best to help her find things to do but cannot get her to really get involved in any outside activities. At first I thought she just needs time, truth is she just doesn’t want to.

She has never been big on seeing a doctor; basically I can't get her to go and I know she is sick. At first I thought she was doing okay, but these past few months have taken their toll. It is not just old age, there is something seriously wrong and every time I ask she says she is fine. You’re not fine when you are losing weight and look so pale and have other physical symptoms that are not good.

I don't know what to do. I talked to a counselor that said I can't make her go to a doctor if she doesn’t want to. I have tried to talk to my mom and explain that I love her and want to help her, I do not want her to suffer and be alone, but she just pushes me away. She says nothings wrong and she doesn’t need help. It makes my heart hurt, I don't know what to do.

Debbie
Debbie_wurfel@hotmail.com

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