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

12/29/02

I'm having a hard time trying to start my story. Where do I begin? I have to start somewhere.

My mom has had emphysema for the past 11 years and has been on oxygen day and night for the last 5 years. She has gotten to the point where she can't take 2 steps without having to stop and sit down because she can't breathe and gasps for air. It's heartbreaking to watch her because there is NOTHING to be done about it. She has limited use of her arms because if she raises them it make it harder for her to breathe Even going to the resort or using a potty chair is hard for her. The least amount of exertion will exhaust her.

In June of 2001 she went into the hospital for a simple day stay, maybe overnight, laser gallbladder surgery and the surgeon that did the operation cut her main bile duct in half. We stayed 2 weeks in the hospital. I say we because I stayed right there with her to help give her the care she needed because the nurses at the hospital could not give her this kind of care. I took the time off work, thank goodness that the company that I work for was there for me and saved my job for me.

There were all kinds of complications from this error, she had to wear 3 bags on her side for months. For a year she had to have ERCPs done every 2 to 3 months to keep her bile ducts clear because they had to "install" stints
to keep everything moving. There were so many doctor visits that I can't even remember them all. This past June she was referred to a transplant surgeon because the injury was so close to her liver that they thought they may have to remove part of the liver or do a liver transplant. The operation was a success and everything was supposed to go back to normal. I took another 4 months off work to help her because she needed constant care and again my company saved my job for me. During this recovery time she was in constant pain and was very depressed. In October the doctor gave her the all-clear and told her that she would have this pain for the rest of her life. That made the depression worse.

In September of this year my stepfather hurt his back at work and is not able to work, doing anything at all, not even around the house. That created money problems for them because of the lost income, and they are trying to deal with that problem now. I have kept secret the money problems that I am having, being out of work for so long, I try to catch up on my bills with the little bit of money I have coming in now but I find that it's impossible to do. My phone rings off the hook from bill collectors and it makes me feel sick to know that I'm in a place like this.
There is NO way that I can ever let them know this. I cashed in all my stock to live for the 4 months but all that money is long gone. My home life is almost destroyed, my man has severe health problems of his own, such as DVT, depression, blood clotting problems, problems with his joints and back problems from a neck injury. He receives a small SS check each month but it's not enough to cover to household expenses. He needs my income to help with this.
He thinks that I don't do enough for him or around the house and that I need to put my priorities in order. There is nothing that I do that pleases him, and I mean NOTHING.

I have to work at least 4 days a week just to keep the household running so that takes away the time that I could be spending with him or my folks. The extreme problem that I'm having now is that my mother's condition has gotten so bad that she needs me there to help all the time. She only lives 30 miles away but it's a long 30 miles when she can't breathe and she needs help right at that moment. I don't know what to do, I might have to choose between my man and my folks. My folks won't move in with us because their worried that if anything happened between me and my man that we would all be stuck with no where to go.

I have my own home but it's so far out in the country that it takes EMS 15-20 minutes to get there and that's not an option. It takes only 5 minutes max from their home now. I would have to move in with them.

Does anyone know of any place that offers financial support for someone like me? I feel there is no where to turn. I'm sorry that I carried on so, but I feel a little better.

Ann Adams
ama@atlantic.net

12/9/02

I am single, and 50 years old. I am generally an easygoing, upbeat person with a great sense of humor (which I am grateful for), but the past five years have been very tough dealing with my aging parents, and a younger brother who had cancer (he is now doing great, which is the happy part). My Mom has Alzheimer's and is in a nursing home near me, and my Dad (82) has been living with me for the last three years. He has problems with depression and is being treated for that. He attends a day program for adults with mental problems, which I take him to each day. He takes a medical motors bus home at 2:30. He is there when I get home from work. He is there all the time, and totally dependent on me for his entertainment, etc.

I have taken care of all the paperwork, finding doctors, getting the right medications and care, etc. I am the only one near to care for them, and they count on me for their "happiness" or little happy moments. I love my Dad and my Mom, but I am ready to lose it sometimes. I have NO time alone in my own home. I have two small dogs I adore, and they are a good distraction for myself and for my Dad. I wish my Dad would want to go to an assisted living type place, but he likes being with me. Then he could come visit me on weekends or whenever he wanted, but I would have some space and have a life of my own. Am I being selfish? Could I live with the guilt? I know I will miss him in ways and I worry about him all the time, but I hate that the way things are now; I have only two opposite possibilities - that my Dad is with me all the time or that something happens to him and he dies. I don't want that. I have so many conflicting emotions, but I'm finding myself really resentful and angry lately. It's not right. So -- looking to share some of these feelings and wondering how others are handling situations like this. Thanks.

Becky
rsherman@frontiernet.net

12/4/02

I am 31 years old, an only child with a deceased father and a mother (70) who has Alzheimer's. Doctors and social workers tell me that I am young to experience this, and my friends don't know what to say or how to help because they don't understand my reality. We share a house in Pittsburgh. I have two careers to support us, and it's getting tougher to juggle everything. I would like to learn if there are other 30-something, only children caregivers out there who are in a similar place. I need reassurance that I am not so alone. Thanks.

Jennifer
handigirl86@hotmail.com

11/26/02

My father died in August and my 82-year-old mother has moved in with my husband and me. Prior to this we had to get custody of our 5-year-old granddaughter. We only have a 3-bedroom home, which is now full, and my mother is very unhappy at having to give up her home and so many of her "things" to move in with us.

She had a stroke 10 years ago and is pretty feeble. Her mind is sharp but she has difficulty expressing what she wants to communicate and difficulty understanding what others are trying to communicate to her. There is no way she can live alone (which she wants to do), and she becomes pretty angry at times. This is unlike her. I have also had to become pretty firm with her at times, because we had to dispose of so many of her belongings that she didn't want to part with. My husband's daughter is also a problem (the mother of the grandchild we have). We had to have her committed to the state mental hospital due to drug related (we think) paranoia and psychosis. With all this happening since March it is creating a lot of stress for me and for my husband. After reading some of the other stories, mine doesn't seem so bad but I would like to know how some of you caregivers of aging parents cope with situations like this. I guess I'm feeling guilty, and a little resentful as well, for having to take the role of being my mom's "parent." Thanks in advance for any advice.

Betty
harlee44@msn.com

11/18/02

My 86-year-old mother and 89-year-old stepfather live with my husband and me. We have 7 children also. My father has had to go on dialysis recently and we finally have a routine down with him. He gets severe dementia when big changes take place. So that is under control now.

My mother on the other hand is in a wheelchair most of the time due to weakness. She seems very depressed and lonely. She used to love to sew but her eyesight has stopped that and that is her biggest dream...to sew again. She eats so little that she is very thin which contributes to her weakness. I'm going on different web sites now to see what I can do about her appetite. I love having them here with us and wouldn't change a thing. They have lived with us for 8 years and while there have been many difficulties over that period of time it has been more of blessing than anything else.

My biggest hurdle is my lack of knowledge of their special needs. I don't usually find out about it until there is a crisis. My mother is in the hospital right now because of severe dehydration; we found her in her a non-responsive condition, eyes rolled back into her head and drooling. She has greatly improved and will probably be home in the next couple of days. My biggest fear right now is that something else will happen that could have been prevented due to my lack of knowledge. Her doctor called last night and is going to send out "In-Home Health" to see if they can help but any advice from those who have been there-done that would be a great boost for me (and my parents as well). I don't want them in a home other than ours where we can take care of them. Having them with us is a tremendous blessing to our entire family. Thank you all.

Allison Welch
crazy.forhim@verizon.net

11/18/02

I am a 47-year-old woman with both parents still living. Dad is 90 and mom, 86. Both are in reasonable heath. Sometime the demands get to be too much. I am in the beginning of menopause and some days I feel like I'm going to blow, which I did about an hour ago. Guess I need a good word. Thanks.

Lynn
lynn42510@aol.com

11/12/02

It was mentioned to my sister and me that we may not be successful in getting my Mom to agree to move into assisted living, and sometimes only a crisis will make it happen. I really do not want to wait for a crisis. The idea of having someone visit everyday will not work either. My Mom will still be alone at some times during the day. I have family at Cape Cod where my Mom lives and her situation is putting a strain on my whole family. She continually gets lost. Strangers pick her up and report her to the police. The fire department has called me several times because she has caused some problems in her home. We receive calls from her bank, the senior center, and the supermarket where she tries to shop, etc. I need to act quickly; my Mom's safety is at risk. My sister and I live 130 miles North of the Cape and need to move her closer to us as soon as possible. My sister's husband (close to 70) has serious high blood pressure and my wife and I are not in good health either. My Mom has said time and time again that she would not live with us. My sister and I have found an assisted living complex close to where we live. As much as I dislike this idea, I have been told that we could seek legal council, claim her incompetent and move her into assisted living. We have had some advice as to whom we should call. However, it seems highly probable that this is nothing new in the world of senior citizens. Do you have any advice? It appears that everyone is afraid of liabilities and tend to give very skimpy advice in fear that they will be liable if something goes wrong. In the meantime my Mom is at a high risk of getting hurt or susceptible to all kinds of dangers. Please find someone who will provide experienced and reliable advice!

Vic P.
vicp@attbi.com

11/5/02

On February 10, 2000, I got a call from my youngest brother that something was wrong with my mom. By his description it was a stoke. It's been downhill ever since. I lived the majority of that first year in the ghetto of Philadelphia, where my parents had resided for 36 years. It was now infested with drug dealers. Then my mom got "A" fib and needed a pacemaker. Then she had an allergic reaction to Liquid Ativan and was constantly hallucinating. Then she and my dad needed cataract surgery - my dad never drove and my mom couldn't anymore, so they, or I should say my mom, agreed to move to the Poconos with me so I could take care of them. It's been one thing after another. My mom has been in the hospital more than out. She has died almost 4 times. She refuses to write a living will, so she was placed on a ventilator, which we finally had her removed from and she lived. The last stay she was so bad - she was no code - had the last rites and made it again. This women just lives on. The emotional stress is hell. She is now at home.

Marian O'Neil-Smith
petitenana@webtv

10/14/02

I have an aunt in Puerto Rico. I live in NYC. I'm trying to find out if there are any elder care managers in Puerto Rico. I've already contacted the National Association of Professional Geriatric Care Managers and they didn't know of any in Puerto Rico. Any information would be greatly appreciated. Thanks.

Ana Ramos
queseo@yahoo.com

10/14/02

I am currently taking care of my grandparents who are living down near Sarasota, FL. I live in Boston, so it has been hard for me to be by their side and address their problems of aging as the years go by. One of the biggest problems they are facing is prescription drug bills. They don't have health insurance and take 19 medications between the two of them for arthritis, blood pressure, cholesterol, breast cancer, etc. It has been very difficult for my sister and me to help them pay for the medications. However, we just started using a company called Canadian Discount Drugs to get their medications cheaper from Canada. The company requires a prescription and the prices were about 50 percent less every three months. I had heard of getting medications from Canada but I had never tried it...but the cost was just getting too high. The people were real nice and the medications arrived in the mail with all of the proper labeling. This has been a true blessing for us and I recommend it anyone else in our situation.

Alvin Cornell
alvincornell@yahoo.com

10/6/02

My 78 year-old mother has had 4 or 5 undiagnosed and untreated strokes over the last several years. My father explained all of the symptoms as old age. Last year she had a stroke while in my company and I took her to the hospital. My father was angry and has remained so. She was discharged to hospice care. After 6 months she was dropped due to her improvement. It turns out that my father had been and continues to withhold treatment and rehab services for her based on a medical power of attorney. I am unable to discuss the situation with her physician on Dad's orders. He often comments if she were 70 instead of 80, he might allow her to receive treatment. By sheer force, I have ascertained her diagnosis and disabilities to be stroke related. She feels she would like to try some rehab but my father is adamant. I find it impossible to have a conversation with my father as he becomes angry and says it is none of my business. I spend 2 days a week with my mother and even the fact that we seem to enjoy our time together laughing and talking (I seem to have more success communicating with her) makes Dad angry. While I have no illusions that my mother will experience more than a modest recovery, it breaks my heart to wonder if she might not benefit from some language and occupational therapies, taking some of the pressure off Dad and making the time she has left more enjoyable for everyone. Has anyone any suggestions for breaking through this wall of anger and stubbornness?

Debby Acuna
dka50@juno.com

10/2/02

My 75-year-old mother is suffering from clinical depression. It started three years ago after a diagnosis of high blood pressure and subsequent medication. I thought the depression was a side effect of that medication but after two changes in meds and six different types of antidepressant medication (she is currently on Effexor and Wellbutrin), there has been no change. She and my dad have just moved in with us because we were worried about the effect her condition is having on Dad. I don't think her psychiatrist has been very helpful and she refuses to go to counseling. While she has always been a "glass half empty" kind of person, she always had interests in hobbies, traveling and keeping up with far-flung family doings. Now she cries a lot, has insomnia, can't stay focused, is all doom and gloom, doesn't know why she is still alive, etc., etc. Any tips would be welcome.

Loretta
colcwarner@msn.com

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