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

11/23/04

My 78-year-old father is in a stage of macular degeneration of the retina, which is causing him to go blind. He stopped driving at night a year ago. Then, he stopped driving during the day upon my Mom’s and brother’s request about six months ago. They gently told him that his attentiveness behind the wheel wasn't what it used to be and with his eye condition worsening they thought he should play it safe and not drive at all anymore. He did stop driving completely and even sold his truck. He didn't give up his keys to their second car though, and my Mom was too afraid to ask him to give them up. He can be stubborn. Luckily he never attempted to drive again, even in their second car. Today he suddenly and angrily told my Mom that the family has a conspiracy against him about his driving, and he is going to drive again and no one can stop him. He also stated he will take a driving test to prove that he can drive just fine. At this point, does my Mom take the car keys off of his key chain when he's asleep at night, or approach him and tell him she wants his set of car keys, because he's just not going to drive? Both of these options would really make his blood boil, but my Mom just doesn't know what to do? Please advise if you can.

Thank goodness for websites like this, my siblings and I need this kind of support right now with my aging parents.

Marcia
mkbooth03@msn.com

11/15/04

I am a 40-year-old from India with an 81-year-old father and a 79-year-old mother. My mum has Alzheimer’s and has been in this stage for almost three years now. Initially they refused to let me help them or keep someone to look after them. The progress into the disease hasn't been rapid. But last week my dad, who had a severe chest congestion and a neglected case of high diabetes, high cholesterol and high blood pressure had a fall and was too weak to pick himself off the ground. My mum didn’t realize the gravity of the situation and didn’t bother to call me. I live about a 5-minute walk away. My brothers have moved to Canada and Australia and don’t offer any help at all. The Canadian has severed all ties with us. At least the Australian sends some financial help as and when he can.

I look after my parents physically, mentally and emotionally. I called that evening just to chat with them and then she mentioned, "Oh Dad has fallen on the ground I called him for lunch but he didn’t respond so I didn’t bother!" I rushed over to find him conscious and slumped on the ground. Mind you this must have been a good seven hours after the fall. I have no idea if he had passed out and if yes for how long. This alarmed me. I rushed him to hospital and he has been there for a week now. I couldn’t keep my mum alone at home so left her at my aunt’s home; she was totally disoriented and couldn’t recognize my uncle, thought he was my dad and in the hospital thought someone else was my dad. She has been really restless at nights and kept going to the bathroom all night and talking to herself. However, now that they are back home, she seems more relaxed, but tends to talk about her past and her childhood all the time. My concern is how do I handle two sick and aged people together. It’s tough, cooking, cleaning and taking care of them and yet trying to hold onto a job for the financial support, which is desperately needed. I get very tired and depressed. My day starts at 7 and doesn’t end till past midnight. Running between two homes and work is not easy

I would love to hear from you if you have some advice and help on how to manage this situation. I am one tired person.

Christine
chrisyeo@vsnl.com

11/7/04

I am about to turn 18 years old in December, a time in a person's life when they "become an adult." But I feel like I have been an adult for a long time. I take care of my father who has Alzheimer's and have been taking care of him for the past six years. I live with my mother and my brother. We all share the responsibilities, but I feel that I am usually the only person in the family with enough patience to talk to my father when he is in a mood about something. My father is now in the last stages of Alzheimer's and now in the mornings, I usually wake up to a puddle of urine scattered variously throughout the house.

I love my father, but sometimes it's so hard to handle him. For example, on the fourth of July last year, he threw a chair through the living room window because he said there were bad people outside. I am not looking for pity, just hopefully, teenagers out there that can relate to me. See, I have tried to go to support groups, but they have all adults there. I would like to find teenagers that I can more easily relate to. I feel that the only way that I have stayed sane throughout this whole process was through God, and God alone. I thank him everyday for my father still being able to recognize me every morning. I don't know how much longer it will last, but I do cherish it now.

Rosalie
soccersurfgurl86@yahoo.com

11/6/04

My husband, 60 years old, diagnosed in February 2004, but showing signs/symptoms since 2001, was treated for pituitary tumor in March 2004. He now has permanent memory loss and is disabled. TI As and seizure diagnosed after his tumor was removed. He was in an inpatient rehab and LTCF for rehab until july 2004. He has good days and bad days, mostly fatigued, but able to do his own personal care.

I am working full-time, we have two children, a 16 year old daughter, a 19 year old son in college. We also have a caregiver. I need a support group, education and information for caregivers who care for someone with memory loss.

There are several problems: (1) Not knowing what to expect and plan for. I don't make definite plans only tentative ones. (2) Dealing with the sudden mood swings and repetitiveness — I ask him to answer his own question or re-evaluate his last comment (3) Trying to work full-time and meet the demands of his medical care. I'm still working on this one. I do have a caregiver, but I'm with him the most time and feel I need to be at each appointment to tell the doctor what he asks and needs to know.

Rosa Hernandez
rlh0812@sbcglobal.net

10/31/04

I am a 43-year-old, single African American female who has been caring for my 69-year-old mother. My mother was diagnosed with MS over 15 years ago. She is in a wheelchair because the greater damage has been to the loss of muscle usage in her legs. She has minimal use of her hands and, takes a great deal of medication. In addition to these physical problems are her mental issues. She's become paranoid, abusive and threatening to me. Although I have a brother and a sister, neither lives with her as I do, nor do I receive any assistance form them in the care of our mother. My sister is taking financial advantage of our mother and, I can't do a thing to stop it.

I'm the eldest daughter. One could say I've always been the most dependable and responsible of all the siblings. My parents divorced, quite bitterly, over 25 years ago. In April of 2004, I was involved in a serious car accident. My back was severely injured. Even so, everything that needs to be done for my mother is done by me alone. I cook (even though she's sometimes convinced she's being poisoned). I grocery shop, clean the entire house, wash laundry, change her linen, bathe her, clean her up after she's used her toilet, change medication patches as needed, drive her to and from doctor's appointments and anywhere else she has to go. Everything she needs and wants I see to. I do all of these things at the same time suffering her persecution on a daily basis.

I and others are of the opinion that my mother is slowly but surely losing her mental faculties. She's forgetful. She doesn't pay her bills. Her bedroom is consumed with papers and unopened mail. Nothing I do is good enough. I've endured the embarrassment of having police officers called to our home by my mother with claims of abuse. Let me state now that no abuse has ever occurred and the officers realize that. I endure almost daily, listening to telephone conversations my mother has with people from our church, friends, as well as other family member's referring to me in some of the most derogatory, hurtful ways imaginable. She keeps a .38 caliber gun under her pillow and a shotgun beside her in bed. She locks herself in her room, sometimes not coming out an entire day. In desperate need of help, I've contacted Adult Protective Services, Genesis, Department of Aging, her doctor and countless others, in an effort to help me in some way.

She recently filed for and received a judgment for an "unlawful detainer," forcing me to move out with no place to go and no means of going anywhere. I've exhausted my savings in order to stay home and care for my mother. My health is failing and I am told that if I do not remove myself from this level of negativity and stress, I may very well have a stroke or heart attack. I ask you, WHAT CAN I DO? Where can I go for support and help?

I'm praying that someone will step forward to assist me or, advise me on how to deal with this situation. How to SAVE MYSELF?

Leigh Maxie
lmaxie2001@yahoo.com

10/29/04

My mom had a major stroke 2 1/2 years ago. She has lost her speech and the use of the right side. She can feed herself and wipe herself with her left hand. She understands what you say to her but at times we have trouble figuring out what she wants. She has had tons of therapy but not much has changed. She walks with my assistance to shift her weight from side to side and with a hemi-walker. Therapists told us if she would fall to that right side she would go down like a tree, because there is no use of the right arm and the right calf and foot are in the plastic brace which she wears all day.

We have tried the use of pictures, a wipe-off board, flash cards and several keyboards but she will not use them. My parents are still living in their home, which is about five minutes from my own house. My dad is 82 and a diabetic and mom is 73. I have found a caregiver to come in while I am at work because mom cannot get out of bed herself and get dressed by herself. She is pretty much paralyzed now from the stroke.

Mom did everything around the house so dad is pretty much clueless. My problem now is I want to move them into my house with my husband and me. Our kids have recently moved out leaving us with three empty rooms. One got married, one bought his own house and the other moved away for work. My sister also lives about five minutes away from our parents but she has two teenage kids who need her. My brother also lives about 15 minutes away and he has one young son and one teenage daughter and he will not take mom to the bathroom so he helps dad a lot with maintenance on their house.

My husband does not have a problem with moving my parents in with us. My brother says it is going to tie us down. I can't see where it is going to be any worse than the running back and forth that we are doing now. My sister and I take turns putting her to bed every night. I get her up on Saturday mornings and give her a shower and also get her up on Sundays. I am getting tired of running back and forth, trying to take them food, which sometimes ends up in the refrigerator for weeks, trying to scrub their kitchen floor and clean the bathroom. The laundry could be done right along with ours.

Some people have told me don't do it, but I can't see where it can be any worse. I'm torn as to what to do and I know it must be hard to leave your house after so many years there, but I don't want to be driving in a snow storm at 10 to 11 pm at night any more to put mom to bed. I have tried to talk to mom and dad saying that if something were to happen to dad, mom would have to move out right away. If mom passed away dad could maybe live there but he does not know what to do. He kept hoping that mom was going to be back to where she was, but it is not going to happen. Thanks for listening.

Ann Jones
Johnstown, PA
ann.b.jones@verizon.com

10/20/04

Thank goodness for this web site. My mother is 83 years old and in overall excellent health, thank the lord. She is a retired CNA and up until recently (June) worked as a companion in the elderly housing she resides in. The two"friends" she took care of died in March and June and that is when changes in her started taking place. She became withdrawn and isolated. She was also confused and forgetful. I felt it was age-appropriate but my sister felt it was more -- maybe early stage dementia and my mom agreed with my sister. I later found out during this time a doctor at her clinic prescribed Zoloft for her and a sleeping pill which she became very dependant on and she was taking her medications incorrectly.

After a multitude of tests, i.e. head scan, geriatric assessments, it was concluded that she had no signs of dementia or Alzheimer's; It was a mild case of sadness due to the loss of her friends. After my becoming very involved with her doctors and plan of care, she is now off the Zoloft.The nurses at the clinic were very helpful and we have enrolled her in an adult day care center, which picks her up and drops her off at her home anywhere from two to three times a week to daily visits. Through the local agency on aging we have a home care nurse come to her home to fill her medication box for her each week, which has helped her immensely. There is a lot of assistance out there if we keep searching and asking questions. Bottom line is we really need to advocate for our parents because we know their true personalities and can help their doctors to better understand them in order to diagnosis and treat them properly.

Marie
marie.decato@gentiva.com

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