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

3/23/05

My mother is 90 and very ill at this time. I have a sister, who is in her 50s who has lived with my mother all of her life, along with her son who is 26 years old. Even though my mother has provided for my sister all these years she has now decided that she does not want to care for our mother. She is now under the mistaken belief that the home that is owned by my mother has somehow become hers.

My sister just made it clear she did not want to take care of her, so I went and got my mother and she stayed with me. I lived in my sister's house at the time. I began taking care of my mother and I hired an in-home caretaker to take care of her so that I could work. My mother told me that she did not want just any stranger taking care of her and that she wanted me to care for her. I told my sister that I would stop working to take care of our mother and at first she was okay with it. We agreed on a plan where I was to move out of my sister's home and into my mother’s home with my mother and care for her there as her house is much larger than the place where I lived. My sister and her son were going to move into her own home. I moved out per our agreement but at the last minute my sister changed her mind and said that I was trying to fool her out of my mother’s home.

I talked to the family lawyer, he talked to my mother and my mother decided that she wanted me and my brother to be co-trustees of her estate, removing my sister from the position of sole trustee. My sister became very angry and filed in court to be made conservator over my mother. The courts sent out an investigator to talk to my mother. When the court investigator talked to my mother, she told him that she did not want my sister to care for her because she never did, and she didn't trust her. She wanted me t o care for her. This made my sister furious with my mother and me. My sister then began making false accusations that I was stealing my mother's money. She then filed for and was granted a court-appointed conservator to be placed over my mother and her estate.

My mother told the court that she did not want the conservator to take care of her, she wanted me and that she did not want the court over her estate. The conservator then put my mother into a mental care facility at 90 years old and later into a care home. I have been fighting with all that I know to get my mother back into my care but they are saying that because my sister and I do not agree, that we are fighting and now that she is in the hands of the state, which is where they are keeping her. The conservator has no relationship with my mother, just with her money. She does not have to tell the family anything about what she is doing. She has moved my mother without informing the family. My mother's court-appointed attorney is a friend of the conservator and have both said that they do not care about my mother’s life plans. She is sick now and unable to talk for herself so she no longer has any rights and her wishes do not have to be honored. I was told last week that my mother had three days to live and that they were going to stop feeding her and giving her water so that she could just die in her sleep. We begged the conservator to let our mother come home to die in her own home as was her wish. The conservator couldn't care less. I went and took her out of the rest home and took her home but they came and took her to the hospital. She is in the hospital now.

Mabel Ellis
truedevotion@yahoo.com

3/22/05

I just found this site. I will soon be 30 on April 4, 2005! I have been a "semi-caregiver” most of my life! My dad has had dystonia (for those who do not know what this is — it can be compared to Parkinsonism) since he was 12 years old, onset by a strike of lightening. He has been able to get around and even work till 1977 when he went on full time disability, but he was still able to drive till about 5 years ago. His dystonia has progressed to the point that he is unable to do anything without assistance (eating, washing, bathroom, standing, walking). To top it off, he now has Alzheimer's! He is getting harder to handle and manage too!

My mom, since 1991, has really gone downhill with her health too. She has had one ball and socket hip replacement and both of her knees. And her other hip needs replacing soon. Her backbone and disc are being eaten up with arthritis to the point it is affecting her legs to where she has to use a walker to get around. Until her medication was recently changed, she even needed help getting into bed. She cannot stand long. So now I am the total caregiver! I cook, clean, wash and wait on both of them hand and foot. I have two sisters married with children out of sight and out of mind. We have tried to get Medicaid. If my parents were eligible (which they are not) They could only get Medicaid for a nursing home. Dad was placed in a nursing home for two months last year and that was a bad experience for all of us. I have tried other avenues for help — all in the end were useless. SO now I am unemployed and no life of my own, total caregiver! There is a lot more that I could say but space won't allow me. I don't know if anyone will read this one or not — hope it will help someone feel better that may be in a similar situation — though I have not met one yet.

Michael Wayne Massey
FALCON-SS@juno.com

3/22/05

In October 2004, I resigned from my job of 20 years to care for my mother. The finance for her care was overwhelming and now I am told her income is too high to qualify for any resource I seek. Each time I carry her to the doctor she has to be carried down in her wheelchair. My downstairs needs lots of work and I can't seem to get help for remodeling. I am getting so discouraged because I want to do all I can for my mother. I pray that God will soon open the door I need. If you have any suggestions, please email and pray for my family.

Pamela Scruggs
pfscruggs@yahoo.com

3/17/05

I am a daughter of someone with a rare form of Alzheimer's disease called the Visual Variant. It took us over 5 years to get my mother diagnosed because this form manifests itself differently than typical Alzheimer's disease. Mom lost her vision first and then consecutively her motor skills and speech. Her neurologist told us that her memory would be the last thing she would lose. I'm not sure if that is comforting or not. I have the power of attorney for my mom's health care and also cared for her at home for over 10 years. She is currently in our local nursing home, where they have a special care unit for dementia and Alzheimer's residents, and has been there for 5 years. I sometimes believe that this disease is much harder on family caregivers than the person with the disease. I never thought that someday I would be feeding her blended food or that she would be in a nursing home. My mother has always been very independent and active, so to see her like she is now is very disconcerting, to say the least. I love her very dearly and pray that her suffering will end peacefully. She would be appalled to know this is how she is "living." I guess sometimes our definition of living differs, but I hope and pray that I don't ever get this diagnosis. Thanks for letting me share my story.

Chris Dewey
auntiec30@yahoo.com

3/12/05

First of all, we lost my daddy to lung cancer in October 2001. My brother and I were with him as often as we could be until he passed away. My sister is estranged from the family and when she did come around, my father became upset and his sickness exacerbated. My mom was with him till he died. He was in the hospital when he died and I was with him along with my mom. But I felt then and still feel now that I should have been with him more than I was.

February 20 of this year, I went to check on my mom. I found her sitting in a chair with a swollen foot. She could hardly get around. when I asked her if she wanted me to spend the night, she said no, it wasn’t necessary. The next day, I went to check on her again. She was in the same place she was the day before and in the same clothes. She was also incontinent. I felt so horrible I nearly died. Her foot was still swollen and red. I did then what I should have done the day before. I took her to the emergency room and the foot was x-rayed and labs were drawn. The doctor said the foot was gout, but that the labs showed she had had a heart attack. The docs said that diabetics have silent heart attacks and don’t feel the pain. She was admitted to the hospital and had a pacemaker put in. She will be coming home in a week or so. We are going to get her 24-hour care.

She is a wonderful, kind woman and it’s an honor to take care of her. But it’s also tough to balance out between work and the hospital and visiting mom. It will all work out in the end.

Carol
thapooksta@aol.com

3/8/05

I am a 48-year-old mother of a 9-year-old daughter. I am the youngest child of my parents and also the only girl. I started being a principal family caregiver when my father was diagnosed with lung cancer in June of 2003. He had his right lung removed and followed up with chemo and radiation.

While this was going on my mother started a downhill spiral from COPD. My dad is 73 and my mother is 71. Mother nearly died this past Christmas. But then on top of both my parents being ill and I then had another elderly relative added to my caregiving. My aunt has now come to rely on me to do her driving back and forth to the doctor. Her husband died almost a year ago. She is also being treated at MD Anderson Hospital in Houston as my dad is. Luckily, my husband has been able to let me stay at home.

I'm also seeing a decline in health of my in-laws (my husband is an only child), so I'm sure they will soon be added to the list. My-father-in law is 85 years old and my mother-in-law is 71 years old. My father-in-law has been having black-out spells but refuses to see the doctor. My mother-in-law suffers from hypertension, seizures as well as diabetes. I am starting to have trouble balancing my life with my caregiving life. My daughter doesn't understand why I have to forego some of her activities to take care of the relatives I need to take care of. Thank you for this site.

Peggy
momtolittleangel@yahoo.com

2/24/05

When I share my story, I have always been met with down-turned eyes, "oh how sad" responses and similar pity. It was completely my choice to have mom move into my house with me; my husband is still supportive after five years, we give up a lot. I am lucky and have always felt guilty that I could not handle this situation better. Mom had a stroke 21 years ago when she was only 50 and I was only 20. Well, life sure looks different at 20.

I am now 42 with two children of my own and a handicap-accessible house. I have always taken responsibility for most of mom’s care. I planned my college classes around her care, planned my jobs around her care and now plan my family around her care. The problem I’m having right now regards my siblings and their lack of interest, lack of help, lack of concern, and mostly lack of support of any kind. When I said I was lucky, mom is coherent, can talk and communicate well, can sit in her chair all day and can feed herself. She has no "degenerative" conditions, she is, in fact, healthier than I.

Daily care consists of getting her dressed, showered every other day or so, preparing meals, and then getting her in bed every night. It doesn’t sound like much when you put it that way, but it is hard on me. She is heavy, losing her balance a lot, and I have two children who are also taxing. She is under foot, taking part in my marriage, my child rearing, and my cooking. It is the worst case of mother-in-law "in your face" except she is my mother. Her personality was changed after the stroke and her needs are many, with aging and loneliness and the stroke.

I battle on, with her, with my family, with my siblings, with time, with energy, and with doctors. What are the alternatives? what is out there in the way of care for her if it is not me?

Sue
tomano@aol.com

2/11/05

I am from India, living for many years in New York. My parents have been living in New York for last 17 years. I felt very lucky to be able to have them here I love my parents very much. My mother passed away in August 2004 after being in hospital for eight months. That was the first time she ever went to the hospital. I miss her very much. To me, if you want to see God in a person, see your mother who brought you into this world. she was and will remain my God. My parents have been married for 60 years, and they loved each other very much.

After my mother passed away, my father broke down and got sick. Now he is in the hospital. In 2004, out of 365 days, I visited the hospital 340 days. It’s very emotionally taxing. I feel okay because I must be there for my parents at their sunset because they were there for my sunrise. I live in Manhattan in New York, Upper West Side and would like to start support group to meet and share.

By accident, I found this web site and Children of Aging Parents. God bless people who are behind it and provide this platform. I read some of the stories, very touching.

So if you are reader in New York and would like to start the support group, let me know. Email me or you can be from any where write me to accept and not feel burned out for some thing where are helpless. Knowing one day we all will go, it’s still hard and the hardest thing is to see parents in pain and not being able to do much except take care of them to the best we can.

tirlok malik
tirlokmalik@aol.com

1/27/05

My mother-in-law, who is 85, came to live with us seven months ago when she had to have knee replacement surgery, which afterwards she went downhill, unable to walk or care for herself at all.

We put her in rehab two weeks ago and she has done very well learning to transfer from a wheelchair but still has to be assisted and always will have to be. All the doctors say she has the first stages of Alzheimer’s and has become so very abusive, blaming us for her condition and wanting to go back to her home.

All her resources have been used and she is unable to live alone. The doctors want us to put her in a nursing home, but she just goes crazy when told this and I am at my wit’s end. When she was here, all she wanted to do was go home and this was a job trying to reason with her.

My husband had power of attorney but it doesn't help in making these decisions. We want what is best for her but she doesn’t want to hear anything we have to say. She threats to die or to make us pay for keeping her from her house that is not even livable. It has been destroyed by termite. Tthe ceiling is falling in and the wood under the siding has rotted away, even if she was able she couldn't go back to that house. Any help would be greatly appreciated.

Patty Butler
pguice@jam.rr.com

1/6/05

Hi, my name is Paul and I have been working for Sunrise Assisted Living the past 10 months. In these 10 months I feel I become a better person. When I first started at Sunrise, I was a server in the dining room. After that, my boss promoted me because of my maturity, and compassion for the residents. The state made an exception to me being under the age of 18. It's not every day that we find people as young as I so caring for the residents, my boss would always tell me.

In working at Sunrise on the Alzheimer’s floor, I learned a lot. Your loved ones wake up every morning as strangers to the world. I can tell any of you to be gentle and caring. Tell them "Good morning dad, it's Paul your son. I am here to take care of you today." Usually you letting them know before they ask the question is better. Let them as individuals make choices. When offering meals, instead of saying would you like chicken with vegetables, and fruit, you can say would you like chicken or turkey tonight? (Being simple is easier for them to decide) I personally know my residents love reminiscing about their past. If you have any questions for me, feel free to email me.

Also, I worked many holidays. So many of the residents cried because their families weren’t with them. They always ask about their families. These are your parents that raised and sheltered you for at least 18 years and you can’t even go and visit them on a holiday?

Paul
kewldawg06@aol.com

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