Caregiver Stories

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

9/14/03

I am blessed to still have a Mother whom I love with all my heart. She is 93 years young. However, as much as I love and do for her what I can (over and above the call of duty), it is never enough. I always see that she is clean, fed and dry. I am tired! Mom's care is more than a handful. I live in Opelousas, Louisiana. Respite care is either not known, not available or unheard of. CAN YOU HELP ME? If I could just get away with my husband for two weeks every three or four months, that would certainly help us all.

Minnie
finksent@aol.com

9/8/03

When my father died in August of 2001, I was left the responsibility of caring for my mom who had previously had a stroke two years before.

Unfortunately my dad's death and subsequent "reading of the will" left an unfixable rift between my siblings and myself and mother. I absolutely had no qualms or doubt that I would care for her. She is my world and I love her more than life itself. We permanently moved from NY to NJ last year and it's so far been quite a struggle financially for me to just pay the bills, the mortgage, the taxes, etc. This struggle combined with working, cooking, cleaning, and bathing her and pretty much giving my life up are just now taking its toll on me.

I'm 30 years old, I don't get to go out with friends anymore, I definitely don't have an opportunity to meet or even date a guy. I've lately feel frustrated and like I'm never going to get the chance to get married, have children and a family of my own. But in some way I feel like making this sacrifice is okay because she is my mom after all and she sacrified more for me I'm sure. But lately I've been feeling angry and I've yelled at her a few times like it's her fault, when I know darn well that it's not. I made her cry the other day and I apologized profusely,hugged her and cried with her. I realized at that moment that I needed help, that I need to join some sort of support group. I'm looking into that now but it's hard because this area is new to me. Know this: our love for each other is stronger than anything and our bond even greater and as long as we havethose 2 elements we'll be okay!

Margaret J. Saffioti
onlymymcfly@msn.com

9/6/03

My 92-year-old mother is dying of cancer. She lives on the east coast and we are on the west coast. She has been with a paid caregiver for almost a year, in her own condo. She has held on to her money all her life so when she got old she wouldn't need me or my brother to take care of her. (This was said to us in sarcasm, many, many times.)

She has badmouthed my dad and brother who passed away years ago, and just about everyone I know or care about. She has always been nasty, demanding, critical, manipulating, petty, and jealous of other people's good fortune, friends, happy life, etc.

True, she has had her share of family deaths and stresses but haven't we all.

She has called me garbage, among other things, although I have tried to please her and make her happy all my life. I am her sole immediate survivor.

After seeing therapists/shrinks, I no longer have the major guilt of not going to see her before she "passes." She is no longer coherent and is in hospice care at her home.

What infuriates me is the neighbors keep asking the aide, "Where's the daughter, why doesn't she come down to be with her mother at this time?" They have no idea of how toxic mom is and how she hurt me and other family members including her 7 grandchildren with whom she has no contact except for one.

We get daily calls from the nurse/aide or we call to see how mom doing. I feel I have done enough. When dad died, she asked, "What do you do for me that any stranger couldn't do?" When my brother died she said, "Now I have no one."

At this point I can't deal with seeing her deteriorate into such a pitiful state after knowing how she has been all her life. She doesn't even seem to call for God to forgive or help her. We have had the chaplain and others come in to pray for her but she is unaware or doesn't want to deal with that.

Does anyone out there have a mother like mine? I truly think she is rare. I heard this from aides and nurses who have had to deal with her over the years as well as her own doctors who were glad to be relieved of caring for her.

Sue
elduda@juno.com

9/1/03

Reading these stories brought tears to my eyes, as I too am going through what most on this site are as well. I'm 50, an only child, with a Mom, 75, who has been battling breast cancer for quite some time. God Bless her, she has been the primary caregiver to my Dad who is 83 suffering from a stroke and emphysema and is on oxygen full time. I visit them twice a week to help with some chores. Today when I saw them I was so upset, as it looks like the cancer has taken hold of my Mom.

With both of them we've been in and out of hospitals and doctor visits so many times I can't even count them. When Mom goes in the hospital, I go live with Dad, take care of him between hospital visits. Naturally I have to take time off from work to do it. But this I don't mind at all.

I'm really scared and upset now, as it looks like it's going to hit the fan really soon. If anything happens to Mom, I simply don't know where to turn to further help Dad. He requires a lot of care, but God Bless him, he has all of his faculties. I'm faced with what so many of you are. That is, do I move Dad in with me or do I face the guilt of finding a nursing care facility? I feel with the loss of Mom and then putting him in a nursing care facility will be too much for him to bear. I fear and hurt over the further suffering that Mom has to go through ... I fear tomorrow.

Thank you all. You are all wonderful people, that care, and you are not alone. God bless each and every one of you and thank you for sharing your stories.

Mike Bruno
mjbruno@optonline.net

8/30/03

Hard to know where to begin. My mother just turned 91 and has been living on her own. She recently took a fall and had to be rushed to the hospital and received several stitches in her head. Since then she has been having episodes of confusion.

I live in another state, about 65 miles from her. I am her only daughter and we have been very close through all my life. She started calling me very often with the smallest of problems, which I could not just pick up and take care of, considering the distance. I had been visiting her once a week, but she had started becoming more and more agitated.

Getting her into a nursing home has been presenting a problem. Too poor and not rich enough. Her doctor suggested I come down and get her admitted to the hospital, which, if accomplished, would make getting into a nursing home easier.

My mother has become very angry with me as she sits in her hospital room, but I feel I cannot take care of her and she cannot be alone. She has fallen in the middle of the night five times in the past month. They had to break down her door to get to her. (She has a life alert button.) The whole episode has been one overwhelming, upsetting and sad problem. I have a lot of guilt and am very sad most of the time.

Hopefully, if she gets into the nursing home and adjusts, things will settle down. I fervently hope for this to happen. Any encouraging words of wisdom from someone out there would be appreciated. (I could go on and on about upsetting things that have happened recently, but I think anyone whose been in my shoes knows what I am feeling: guilt, sadness and helpless.

Anita
jaycee42@comcast.net

8/29/03

Both of my parents are living in their own home, but finding it increasingly difficult to pre form everyday tasks. My brothers and I help out as much as we can to make their lives easier and they have a healthcare worker who comes in Monday through Friday from 9 a.m. to 1 p.m.

I work full time and commute an hour each way and I am finding it hard to keep up with my own life's demands.

It is so hard to watch as both my parents struggle daily to keep their spirits up. I have tears in my eyes as I write this, because as hard as it is for me, I cannot imagine what they must be going through.

My father is 82, diabetic and restricted in movement due to bad circulation. He is confined to a wheel chair most of the time.

My mother is suffering from osteoporosis, rheumatory arthritis and the list goes on, including some form of old age dementia. She is 85.

That's my story. It felt good writing. I have been depressed and needed to release my feelings.

Best of luck to all.

Jane Wooley
jwooley@impactunlimited.com

8/25/03

I began taking care of my 83-year-old father in February 2002. When he first came to me he had no trouble walking on his own. He would even get in the kitchen and cook and wash dishes. He has emphysema and also has prostate problems. He has been hospitalized twice. It is sometimes hard for him just to walk to the bathroom and back because he gets so winded.

I was working when he first came but went out on disability because of a plantar tear on the bottom of my foot and had to have surgery. When I went back to work, I found I was terminated and have been out of work ever since.

What I need is to find some kind of financial help. Right now I am receiving unemployment and that is not going to last long. I also do not want to leave my father alone in the house by himself. He has gotten used to me being there and worries if I am gone too long to the store or running errands. Right now he is with an abdominal catheter because his prostate is swollen to where his bladder will not empty like it should.

I can't complain because he isn't any trouble. He thinks he is and because of that he will not tell me much of what is wrong with him. He suffers in silence. I have to let him know that he has to let me know whenever he is in pain or when he needs to be cleaned up more than usual. I am always there for him. But what I need right, now since I cannot go out to work, is some financial help. I have two sisters and one brother, but they can't help me right now because things are tight.

If anyone who is doing the same as me let me know how you are making it and what resources you used. It would be a load off if I could get some form of help. Most of it I put in God's hands. He holds my hand when I need it, and that,s quite a lot these days.

Naomi
nwashington98@excite.com

8/27/03

I am originally from Connecticut. I now live in California, and three years ago my mother moved out here after breaking her hip. I live in a town house, and she owns the one across the walk.

I have two brothers who live back there, one with Alzheimer,s and the other the apple of my mother's eye. Growing up, I never felt loved by my mother. She always favored my brothers, but, I was dearly loved by my Dad, so this made up for that.

I got divorced 7 years ago, and when Mom moved out here my children were 20 and 23 years old. As they had never lived close to a grandparent, they were pretty excited. This was the background. Six months after moving out here, Mom became an invalid. She needs help getting out of bed, into bed, all of her meals and bathing. She refuses to let me alter the time, so I live under her control 24/7. I have had two vacations in 2 1/2 years. One of them, 18 months ago, my cousin came out to stay with her and the other for five days last week. I went east for my nephew's wedding.

My mother was mean to me before I left, and horrible once I got back. She made rules for the person caring for her, and then got mad when the person followed her. She is mean, nasty, and I am going crazy. My brother and sister-in law are no support because they are so wrapped up in her money, they don't care if I kill myself. "It will cost money to put her in a home." I am going crazy. I could take care of her physical needs, but the emotional blackmail of her toxic personality is killing me.

Shirley Saunders
ctshoily@msn.com

8/4/03

My name is Kelle. I live with my grandfather who is 91 and has Alzheimer's. For the last 5 years I have taken care of him 24/7. I'm now 38. I get paid a very small amount, therefore I don't have insurance for the doctor and I can't afford my medicines. I'm not eligible for medicaid and my grandfather is only able to receive 4 hours a week in in home services. Is there any place I can turn for extra compensation,wages,etc? The cost of living has increased but my salary of 400 monthly has stayed the same. Any help as where to find financial would be helpful.

Kelle
outerzalma@aol.com

7/28/03

In June 1999 I was laid off from my job of 23 years and decided to rent my townhouse and move closer to my aging parents to help out. The problems first started with my tenants thought I was going to tolerate bad checks, late rent and finally no rent and continue to live in my home. I stressed to them that I was unemployed and needed the rent on time so I could pay the mortgage. After going through the legal system for eviction, I found the law was on their side since they were filing for bankruptcy and I could not evict them. There I was $3,000 due me for back rent and tenants who the law said could continue to live in my house. Finally one day the tenants moved out once they found out they could not file full bankruptcy and they would have to pay me the back rent. It took me months to track them down and have wages garnished. In January 2000 I finally found a job and once I started the job I totally and completely hated it.

At that time, my mother could be left alone. Then in August she was experiencing severe abdominal pain. I took her to the ER but they said nothing showed up on any of the tests but would keep her for observation. She was delerious with pain and finally a nurse called in another physcian who ordered more tests and found Mom's intestines were getting ready to rupture. She was rushed into surgery and spent weeks in the hospital. From this point on Mom could not be left alone. A few months later Mom took a fall and broke four ribs and fractured her hip. She was put in a nursing home for rehab but hated it there and would have the nurse call me almost daily to come and get her. I have three brothers and one sister. At this time, one of my sisters-in-law had retired so she was staying a lot with Mom during the day while I was at work. One brother was taking care of most of the outside yard work as he had for many years and then another brother retired and he stayed a lot with Mom during the day.

Mom gets angry if I need to go to the store and pouts if I go anywhere. She has been known to not take her meds and tell me she did just to get back at me for taking an hour to grocery shop. My stress level has maxed and my physician sent me to a massage therapist and chiropractor to help with the stress. It does help but I just don't know how much longer I can take having NO time for me and I think having work being a sanctuary is ridiculous, but that is the only place I can really have to myself.

Kay Marrs
alanmnca@aol.com

7/24/03

My mother is 82 years old. She had cancerof the kidney 12 years ago. The doctors removed her kidney and she recovered 100 percent. Well, almost. She now has problems with her bladder and she can't control herself when she urinates. It was a real struggle to get her to wear depends. She does now, but she dosen't want to change them every time she urinates because they are expensive. The results are she wets the bed, the couch. etc. She walks with a walker so she can't carry a plate, a glass, etc. I have to do everything now. I feed her, dress her,bathe her and try to keep her busy. My mother also has been diagnosed with manic-depression. The woman I knew to be so sharp now can't remember to take her medicine.

I am 41 years old and I am an only daugter. My brothers do not help at all. I am somewhat overwhelmed. I am lonely and need help.

Jana Brown
dwntwndb@eartlink.net

7/14/03

My story starts in 1982 when my Mother became a widow suddenly and did not drive. As an only child, I became her sole source of transportation and advice. Since she never handled family finances, this also became my job. She sold her home in 1989 when she became more fragile and built an apartment attached to our home. In 1996 she fell and broke her hip and has since suffered from severe osteoporosis, arthritis, a loosening of the hip prosthesis due to the osteoporosis, glaucoma, severe hearing loss and lately she has started having signs of dementia and suffers from chronic constipation. She cannot/will not eat or drink well since she says she cannot chew even though she has dentures and won't drink more than 3 glasses of fluids a day. She is down to 84 pounds from 135 and is now 100 1/2 years old.

My husband is 83 and I am 73 and we are wondering when our "Golden Years" will start, after 20-plus years of caregiving. We have an aide come in once a week for our day off. Since Mother and I never got along while she was well, it is a struggle for me both physically and emotionally.

Everyone tells me that I am a "saint." Baloney!

Arlene
ambigelow@willex.com

7/14/03

I am 44, single, female. Seven months ago, I gave up my job in NYC and moved in with my parents (mother, father and aunt) in Orlando, FL in order to care for them. My mother is in the early stages of Alzheimer's, my father is losing his hearing and sight (although he won't admit it), and my aunt suffers from diabetes and high blood pressure. In addition, I have an uncle who lives nearby who has had two strokes and has severely limited mobility.

In the meantime, I have yet to secure permanent employment. I feel overwhelmed, useless and stuck. I haven't reached my wit's end yet, however, I'm quickly approaching that point. I would just like to be put in touch with a support group in this area so that I can better cope with the situation.

Renee Neslo
rneslo@hotmail.com

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