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

3/30/04

My story is the following. I am an only child, now married and living with my parents (in California) who are both older and very ill with various health issues. One of the problems I face is that since they are on a fixed income (Social Security only) and with Medicare that does not cover very much they have found themselves having to charge their doctor visits and prescriptions, etc. In the meantime, they took out an home equity line of credit (their house is paid for) a few years back to buy a car and pay for some other credit cards and I am afraid that their debt might outlive them.

What am I to do? My husband and I are literally living hand to mouth ourselves and could never afford to pay off any of their debt if we had to nor could we pay for any nursing care which they both desperately need. I am at a total loss and very scared. They both have a revocable living trust with POA for healthcare which I have been assigned as first alternative. They don't qualify for medicaid because they own a house and according to the standards they have too much in Social Security for Medi-Cal.

Mom was just recently released from the hospital and has incurred a large co-pay she does not even know she has to pay yet. What are we to do with all this?

Kristy
iris_1_2000@yahoo.com

3/28/04

I think that this web site has fallen into my lap, to help save my life. I am a currently taking care of my 77-year-old mom, which I have been doing for the last 10 years. My mother has a lot of chronic illnesses that coupled along with age I am watching her basically deteriorate before my eyes.

I took care of my terminally ill brother until he passed away in 1994. That is when my mom had her first stroke and became paralyzed, due to the stress of his death. Thus our pathway of caregiving began. My mother is bedridden, wheelchair-bound, and has been in diapers for the last few years. I am tired and basically on a death watch, which I hate!. I no longer feel like a daughter, I am just the caregiver. To throw a new wrinkle into the plan, earlier this year I was diagnosed with multiple sclerosis, which coupled along with me being an epileptic is not good! I do have siblings who have started to help with the situation, but my mom is so dependant on me and my family, it is an ordeal to take advantage of their help. When my husband/kids and I try to leave her with others, she usually gets sick and we have to return. I am at my wits' end, and trying to make sense of it all. I feel ashamed and guilty when negative thoughts cross my mind. I don't even know how to finish this letter, except to say thank you for this little bit of understanding.

Janne Davis
poetessjmd@yahoo.com

3/26/04

Alone and with little help I have for over 35 years seen to my aging mother's care.

My mother and I have gone through a great many trials and tribulations over these years, including finally ousting a drunken step-brother, 2 weeks of which my mother was on life support and countless other times of crisis. Despite all, I have always been able to see at least to my mother's basic need and find happiness and gratitude in her company.

Yet, this job has never been easy, many were times when I felt like my emotional rubber band was finally going to snap. The isolation was almost unbearable after losing contact with my friends and making my mother the center of my life. I felt like someone stranded on a deserted isle with no hope of rescue.

Now, it appears that in addition to her primary illness of COPD, my mother has developed serious heart problems in addition to her already enlarged heart due to the COPD. I have been advised that stress of any kind is not advisable. Plus, I have seen my mother age more in the past year that of the past 30.

Although as yet unspoken, my mother and I both feel that the time has come for us to part, with my mother relocating to a type of assisted care residence thereby allowing me to once more have a life.

Yet, despite the fact this should have me feel like some impossible heavy weight has been lifted from my shoulders, I don't. All of the wrong emotions fill me, fear at joining society at nearly 50 as well as a feelings of helplessness and impotence fill my days.

Thoughts of losing access to seeing my mother as well as my best friend fill my mind, overwhelming me with daily bouts of major depression. At times I firmly think that a nice long session of sobbing would help, but I find that despite my sadness, no tears will come.

It appears that I have come full circle, back to the point from which I abruptly left to take care of my mother and instead of being happy... I am not.

Thomas
varaptor@att.net

3/22/04

I am 35 years old and was suddenly thrust into the caregiving role 4 weeks ago. My 68-year-old mother has vascular dementia and admitted herself to the hospital after a serious paranoid attack where she thought people were out to kill her. According to her neighbors, the paranoia has gone on for a long time. We always just thought mom was a little weird, but never realized how much of an issue it was. She's gotten the help she needs and was transferred to a nursing home where she is now living. My sister and I had to leave our jobs on short notice to fly home to close out her apartment. The place looked like a tornado had hit it. It took us both the full week - 16 to 18 hours per day to clean it out. We had no time for dealing with accounts, seeing doctors, etc. We had to put that off to deal with from our homes by phone, email, and fax.

My mom seems normal most of the time, but gets easily confused and can't keep track of day to day affairs. We found several delinquent bills and letters from collection agencies in her apartment and she has no money except for the $600 per month in social security. My sister and I are lost and need as much guidance as we can get. We are so new to this and I can't even get a straight answer as to how much the nursing home will cost. We are afraid of financial ruin and not sure how to handle her bills and future needs. Please email me if you have any advice you can share.

Lynne Meddaugh
l_meddaugh@yahoo.com

3/18/04

My father is 84 years old. He is a Pearl Harbor survive. He lives in southern California. I live in Arizona. Basically he is in good health of mind and body.

Recently, he had two very mild strokes because he refused to take his high blood pressure medication. Thankfully, he has no ill affects and is for now taking his meds.

The problem or situation is 1) he lives alone and has taken to collecting junk from dumpsters. Anything and everything. His house is a mess as is his backyard. 2) Most of the time he doesn't open his mail, (we had to get everything on direct pay because it kept get disconnected). 3) He brings people in off the streets to do odd jobs with his financial information and often times cash lying around. A prime candidate for identity theft. 4) He gets good retirement and has good insurance.

Problem: He is refusing any family help. Refuses to admit he has problems and only follows doctor advice when he feels he has a problem. Keeps accounts with his dead wife's name on them. It's been 20 years almost. He still drives and probably shouldn't, especially at night. The street people even call him to drive them places and pay for things.

How can we help him and what should we be doing to help him? We have been trying to talk to him, reasoning with him and everything else for at least 5 years and now it could really turn ugly should he be seriously ill. Does anyone have any thoughts?

Lucy Vaillancourt
lucyvaillancourt@yahoo.com

3/14/04

My mother is 74 years old and has had to have surgery about a month ago. My brother and I have to work to support families, my sister is the only one who has no one to support and has quit her job to come home and take care of our mother. My mother has emphysema and has to be on oxygen; she cant' get around like she used to. She needs someone to take care of her. I can see her at least twice a week and on weekends, but my kids and husband require attention, my job is very stressful and not being able to take care of her is making it harder. I wanted to move her into my home, but she refused to her of it. My sister is staying with her and doing what she can to help, but now has no income to pay her own bills. All she has is a car payment and her insurance and medicine, but no way to pay them. We are not a wealthy bunch of people and are not asking for much, just some way to get my sister by so she to can live and have some sort of income to pay for her bills. Is there a program that can help us out while our mother needs us most?

Joyce Rutledge
MsRip2U@aol.com

3/13/04

My father is 87. He has many medical conditions including congestive heart failure, renal insufficiency, diabetes and various digestive problems that come and go and suffers from depression and anxiety. I am a 51-year-old woman and I am his sole caregiver. I do everything for him, including bathing him, cleaning him after he uses the commode and worse when he doesn't make it to the commode, which is more often than not, cooking for him, taking him to all his doctor appointments, cleaning up after him, (he's always spilling or dropping things and sometimes deliberately throws food), his laundry, dressing him, making sure his medication is out for him, shaving him, at times feeding him, and bandaging him. I also check his blood pressure, pulse and blood sugar twice daily and check his stool for blood since he gets bleeds at times. When he is hospitalized I sleep next to his bed in a chair. Last year I spent most of October July sleeping in a chair. All told I don't think I spent more than a month in my bed, just a few days here and there between all his hospitalizations. This greatly contributed to the worsening of my own condition with my legs. I can't bring myself to leave him without anyone to tend to his needs in a timely fashion. It is common for a half hour or more to go by before a nurse comes once a patient rings the call bell. I've heard many horror stories and seen some with my own eyes. Patients have had heart attacks, strokes and died while waiting for someone to come when they call for help.

My father and I are alone in the world. There are no other living relatives, friends or even neighbors we are friendly with. We can't afford to pay for a companion or for someone to help with anything. We were always very close. When he retired in 1982 we went into a photography/video taping business together. We did everything together shopping, eating out, movies, vacations etc. He was never around when I was a child so I guess we both made up for lost time and became each other's best friend. I spent so much time with my father that eventually I lost contact with the few friends I had and he never had any friends to lose. I know our situation wasn't typical and maybe wasn't even healthy for either of us. I guess I should have thought more about the future then. Actually I did but I couldn't turn my back on doing things for my father and taking him around. After working so hard all his life he finally had a chance to live a little and I was happy to give him that. I'd see how quickly the years were going by. Years passed at breakneck speed. It was like in those old movies when they would show the pages of a calendar flicking by practically at the speed of light. That he'd end up this sick and I'd end up sick, middle aged with no husband, kids or grandchildren, almost penniless and basically alone I guess I pushed from my mind. It seems like yesterday I was a child and then a young college student and then in my 30's and so on. It also seems like yesterday that my father was running around, bowling, playing golf, and most of all excited about things in life. Those good days flash through my brain constantly. I know it's wrong to live in the past, but the present and future is so horrible to live in. I can't turn the thoughts off even if I want to. I do try but they like the terror I feel always come back.

I'm disabled and walking, lifting, reaching and bending is difficult and painful for me. I also injured my right hand (I am right handed) last October lifting my father's wheelchair into the back seat of our car. I know I should not lift it but if I don't, who will? I can't work and even if I could there is no one else to care for my father. The only alternative would be to place him in a nursing home. Neither of us wants this for many reasons, one of them being that it is my father's pensions and Social Security that pays the rent on our apartment. I only receive a small amount on SSI. If a nursing home takes all of my father's income I will become homeless. There are virtually no apartments, even a single room somewhere, that I would be able to afford. Also, I know my father. He would never survive in a nursing home. He is not the type to stand up for himself. It has always been just the two of us and I have always fought his battles for him, even as a child I spoke up for him. He is not a social person and the worst thing now is that he seems to have lost all interest in life. I saw a little of what being in a nursing home is like when my father was in rehab from early July until mid September. It was awful. The medical care was almost non-existent and no one cared if he ate or not. If he left over every bit of food on his tray at every meal they never noticed. If he goes into a nursing home I will not be able to afford to even get there to watch over him the way I did when he was in rehab.

His doctors say that his extreme sleepiness, tiredness, need to stay in bed and sleep 24 hours a day is caused by depression. They say he has given up. He has been on an anti-depressant since May 2003. He is worse now than ever. I know depression can do this, yet I fear that it is more than that and they are missing a physical cause. The doctors have told me staying in bed contributes to his weakness. I know bed rest is very bad for the elderly. Yet, every time I force him to get up or eat or try to interest himself in something it tears my heart out because while I know this is best for him, I worry what if it's physical and he's so weak and tired because he's dying and here I'm making him use up what's left of his strength. I don't know what's right to do anymore. All I want is to do what's right for him.

I took my father to a live-in rehab last summer. He could or felt he could no longer walk and while I do everything for him and I'm a large woman, I am not able to lift him and carry him. The rehab did no good. I watched the people there and I could predict those who would get well or at least get better and get back to their lives. It seemed to all be in the attitude. The people who joked around, talked to the therapists as they walked them, talked to each other, took an interest in things all seemed to do well. My father did not. Even there all he wanted to do was sleep, although not with the extreme intensity that he wants nothing but sleep now. He claimed he had extreme shortness of breath every time they tried to walk him, yet he was able to ride a stationary bike for 20 minutes at a time without any breathing problems. When they measured his oxygen saturation it was always 98-100%, which is very good. Since he came home from the rehab there have been good days when his mood and appetite was good and his walking was a little better and he seemed to take an interest in things. There have not been any good days in the past couple of months and I don't think there ever will be any again. I wonder if it's not emotional and he is just getting sicker physically. I do not know what is real with him and what isn't anymore.

This is a big problem because I don't know when his symptoms are physical and when they are psychological. Two weeks ago his sleepiness became as extreme. He began to have trouble staying awake at all. He said his shortness of breath became worse on even the mildest exertion. I didn't know what to do. Being in the hospital all those other times probably contributed to his weakness. So not knowing for sure if his latest problems were physical or not, I waited an extra day before taking him to the ER. This time it was physical. His right lung was filled with fluid and he needed a pigtail chest tube put in to drain the fluid. I feel terrible because I didn't believe him right away.

For months when my father was hospitalized last year he was able to eat and walk. In fact he walked with only a cane and walked so much that we learned where nearly every part of the hospital is. The nurses and doctors on the various floors he was on even joked about how much he walked. Then in May of 2003 his urologist placed a supra pubic catheter in him. He was given spinal anesthesia for the procedure. It was only after that his legs became very shaky and would tremble when he stood or walked. All his doctors say it is very unlikely that the spinal anesthesia has anything to do with it. They say he became de-conditioned and depressed from his failing health and all the hospitalizations. His primary doctor doesn't feel anything will be accomplished by sending him to a neurologist as I suggested. The fact is that my father walked from a car service into the hospital, to the admitting office and up to his room, quite a distance for all combined, with nothing more than a cane when he came in for the supra pubic procedure and once it was done he could never really walk again. I don't know what to think.

Now he is as bad as he has ever been with the sleepiness, weakness and his loss of appetite. Every meal has become a battle. He's lost 20 pounds in the last couple of weeks. Every morning and after his nap time when I know it's time to wake him and get him to get out of bed I get so nervous that my heart races, my stomach is tied in knots and I vomit because I know how he is going to carry on. My father used to have such a great sense of humor and he loved working on his computer. Sometimes he would talk on and on about his dreams for the future or his past. Now telling him to go to the computer is like a punishment to him. Not only does he not want to talk, he doesn't want me to talk to him. He says he can't stand the sound of my voice. He has also become more verbally abusive to me than he'd ever been before. He puts me in the role of the villain. I'm the miserable witch (his names for me are actually more X rated) who forces him to get out of bed, stay awake and eat. He says he's too tired to eat or feed himself. He knows how painful it is for me to stand for any length of time and yet in the hospital where there was no room to sit next to him he had me stand for hours on end to feed him. It takes him about 15 to 20 minutes to swallow each bite of food. The doctors said there was no physical reason that he could not feed himself or swallow. I don't know what to believe. What I do know is that it seems like he stopped caring about me in any way. When I get asthma attacks during the night and I cough, he tells me to be quiet and stop making noise. One time when he was in the hospital and I stayed with him I got food poisoning. I had to go to the hospital's ER. When I came back he never asked me how I was. He only complained that some nurse came into the room and left the lights on and I wasn't there to shut them off. He wasn't always like this. In 1989 I had cancer and they removed my right kidney. I remember how he waited all day when I was in surgery and he held my hand when they brought me back to my room. One time in 1981 I had a very bad case of the flu and I remember he came into my room and pulled the covers up to make sure I was warm enough. Now it seems he hates me. I can see it in his eyes when he looks at me.

His doctors still claim most of his problems are due more to depression, not caring any more, etc. than to his illnesses. It seems that way until I add in things like sleepiness and weakness that seem way beyond anything depression can cause and he's losing weight quickly. I've seen people and even one of the cats we had who were dying of cancer and he's acting so much like them. He and his strength seem to be fading away day by day. I'm so afraid that he has some kind of cancer that they're missing or that his heart condition is worse. I asked his doctor to call in for a cardiac consult while he was in the hospital last week. He said no. He said that in my father's case, his age and all, there is nothing that can be done for his heart failure so why put him through tests again. Last year my father had an echo, angiogram and something called a TEE test. They all showed heart problems like mild blockage and mild CHF, but nothing terrible. His cardiologist said for his age his tests weren't bad at all. That was a year ago. I'm afraid that has changed and wish they had done at least another echo on him, which is not invasive or hard on the patient in any way. On the other hand I know how stressful medical tests and procedures and being in the hospital are to my father physically and mentally. It is very hard for me to take him around for medical things on an outpatient basis. As I said, I am not well and ambulettes are very expensive. I was planning on taking him to a geriatric psychiatrist when he became physically sick again. Now I don't know if he'll ever be well enough for that.

My father worked two jobs most of his working life. He receives two pensions and Social Security. Even though we usually spend every penny he makes by the end of the month he still makes too much to qualify for Medicaid. I even spoke to an attorney who specializes in the elderly and she said he makes too much to spend it down. Yet they don't take our rent, which takes almost half of his income, utilities, ambulettes, and his many medical expenses like bandages for his leg wounds, his monthly catheters (Medicare no longer pays for them) and urine bags, the very expensive vitamins his ophthalmologist wants him to take to try to save his left eye from macular degeneration, (he's legally blind from it in the right eye) and medications not covered by insurance into consideration. What seems very unfair to me and is truly heartbreaking is that my father worked so hard for 30 years and paid so much in taxes and is still paying so much as even his Social Security and pensions are taxed and our government tells him he is entitled to next to nothing. Yet people who have just come to this country and have never worked a day here nor have they contributed a dime in taxes are handed everything my father is told he can't have Medicaid, section 8 so that they pay only a very small fraction of the rent that we pay in full, financial aid for their kids to go to school, food stamps, SSI without the years long struggle that I had to go through to get it, and many more things. These people can get the home attendants/companions/housekeepers, bandages, medications, adult diapers, chucks (disposable pads), and many other things that my father is denied. Mostly for all his years of hard work and tax payments he gets a big no and door after door slammed in his face. Please understand, I don't begrudge people who come to our country getting help. I just don't think it's fair that people who were born here and came from families born here and tax paying generations back and who worked very hard all their life, in my father's case since he was 17, are not getting what people who've never worked here or paid taxes get the moment they land on our shores. I also don't think it's right or fair that the government would be willing to pay 10 or more times what some home care for him would cost to a nursing home. I suppose it's because wealthy people own nursing homes and wealthy people are who politicians cater to. It's not the poor or middle class who line their pockets. In my opinion it's all politicians, be they Democrats or Republicans.

My small SSI check is enough to pay for my personal expenses, which are few and that's about it. As things are now I can't even go to the ER for anything that happens to me like asthma attacks. While I do have Medicaid, even though I never worked as many years as my father, I'm afraid that if I go to the ER they will want to admit me, as has happened in the past. These days, with no one to watch my father, being hospitalized myself is out of the question. I've taken to treating it myself with my inhalers and when they don't work I take prednisone. I know self-medicating is stupid and dangerous. I just don't know what else to do. If I go into the hospital and they do need to admit me that will be the end for both of us. My father will end up in a nursing home and I will not have a home at all to come back to. I realize how unrealistic it is to expect an 87-year-old to be around much longer, still I pray that he will be. I'm so afraid of being completely alone in the world, especially without money. I see the way people like me are treated. Since the 1980s it's become "in vogue" to despise the poor. In my city the homeless are treated worse than they ever have been and shelters have become more dangerous and filthy. I freeze with terror knowing this life is probably my future. Mostly I want my father to live in the hopes that he will improve and get to have some good days. I want so much for him to laugh and smile again. It's been so long since I've seen him do either. I want him to get some enjoyment out of life. He had a very hard childhood and young adulthood. Then he did nothing but work for so long. I pray that he still gets to enjoy life even if it is just for another few years.

Okay, I'm going on and on and babbling now. I'm sorry. I guess I'm just so desperate for someone to talk to. Going to support groups is out because I have no one to watch my dad. I only go out once a week to the grocery and to post our mail. I put him into the bed for his nap and I have two to three hours. I'm afraid to leave him for longer than that. I feel so overwhelmed. I can't seem to stop crying. It hurts so much when my father makes fun of that . . . the crying. I know I'm a middle aged woman who should not care, but I do. I'm terrified all the time. I have trouble sleeping, even when I take over-the-counter sleeping medication I'm awake most of the night because of pain in my legs and because I can't turn off my thoughts. Sometimes the terror and panic immobilize me to the point that I literally can't move, even to pull the blanket up over me.

In some ways the worst is when he has an occasional good day. I feel hope and by the next day that hope is gone. False hope is the worst thing. I've tried to talk to his doctors but they are always rushing me out the door. Sometimes I look back at the dreams we had for our lives and I can't believe it's come to this. I'm so scared of becoming homeless. People don't realize that it's not just rent that poor people can't afford. If I put every penny of my check into rent it would be things like toothpaste, toilet paper, deodorant, soap, laundry money and detergent, antacids, electric, gas and telephone that I would not have. Those things aren't considered a necessity for the poor by the government I guess. Good dental health is not considered as something important by our government either. I went to a Medicaid dentist. I was told by Medicaid that the tooth that was painful and needed work was not important as I had other teeth to chew with and all they would pay for was an extraction. With only my SSI check I would not be able to afford gas and insurance for the car or repairs for it. It is a 1977 car with a book value of less than $500 and it always needs some kind of repair. Public transit is very difficult for me. I can't stand on my feet to wait for it or if there is no seat. I can't climb stairs and I also get terribly car sick. I get that way on buses, trains and as a passenger in a car. Whenever I have to take my dad somewhere in a car service (because there is no place to park the car near most of his doctors) or ambulette I am always vomiting along the way and for a while after we get there. It's very embarrassing besides how awful it is to feel so sick. It's only when I'm driving that I don't get car sick that much. In addition to that, very hot or very cold weather triggers my asthma. So during many winter and summer months, waiting for a bus is very difficult for that reason. I know many people live that way (unable to afford anything) and I'm not any better than they are or more deserving, but I'm still so scared to know what the future is going to bring for me.

I'm much too much of a coward to ever harm myself but not a day goes by when I don't wish I would get something that would kill me. It seems so unfair that people who have so much to live for and have kids and grandchildren and a mate who loves them and everything die from things like cancer, heart attacks, strokes or accidents. I would give them whatever years I have left if I could. I'd also give them to my father. If I could I'd switch and give him whatever years I have left. I know he'd never believe that. He thinks I only want to hurt him because I make him do what he hates like staying awake, trying to occupy his mind and eating, but in my heart I know there is nothing I wouldn't do to make him well or better in some way if I could. There is nothing I wouldn't give him, even my sight, if I could. I so regret that I ever agreed to be operated on for cancer. If I had not I never would have seen my once strong father get into this condition and I never would have to be so terrified of what's to come in my every waking moment. I know how selfish that is, but that is how I honestly feel.

I also know I'm coming off sounding like the queen of self pity. Sometimes I disgust myself. I just feel so trapped and terrified. The government would happily pay a nursing home tens of thousands of dollars a month for my father to stay there and yet they will not give us someone to watch him for a few hours a day or help me get him to doctors offices so we do not have to take an expensive ambulette both ways or maybe I could go to a class and learn enough computer skills or something I can do sitting down to get a job that would pay the rent someday. I really think I could do a job that I could sit doing. Anyway, thank you for listening. I don't expect any answers. I know everyone has his and her own problems. Sometimes I just wish the most for someone to talk to. I now understand the lonely people who start taking to strangers on the street. I also know what a turn off they are to most of those they "bother" with their conversation. I hope I don't end up doing that, but at least now I truly understand the need for some kind of contact with another person, even if it is with a stranger who considers you a nuisance and can't wait to get away from you.

My faith is more than shaky these days. I don't know if I believe there is anything good out there. It isn't just my life. It's all the horror and misery I see in the world. I see the rich and powerful getting more rich and powerful while the "have nots" suffer. I see a world where filthy rich leaders allow little children to starve to death. I see women who pay God knows how much to have their toes cut off so they can fit into $900.00 shoes while other people can't afford to see a doctor or dentist for real problems. I see the rich and famous get away with horrible things. It's not only that the law doesn't hold them accountable in many cases, it's that society doesn't seem to care what people do any more. As long as they are rich and/or famous they can kill, rape, molest children, steal and cheat and still their celebrity friend's stand up for them and still their fans rush to support them. The way this world is going scares me to death and being alone in it scares me the most.

Once again, thank you for the opportunity to write this. Even if no one on the other end ever really reads it, I guess for the hour or so it took me to write this, it helped to vent a little.

If someone does read this, please pray for us. I don't know that I believe any more that there is anyone or anything really there to pray to, but just in case, please. Thank you.

Robin
robin1111s@yahoo.co

3/8/04

I had no idea there was a web site like this. I'm so glad I found it! It's encouraging to know that people are out there caring about caregivers.

I know I'm not the only one caring for elderly parents, but sometimes it feels that way. It's difficult to connect with people who have not had this experience, because they really don't understand what I'm talking about. I'm single, never married. I'm 55 years old. Dad is 79 and mom is 78. They are actually in pretty good shape, though mom suffered a small stroke in January. I guess I'm looking for people like me to talk to. We share the same house, but I do go out to work. They are pretty independent, but I worry about them all the time, which keeps me from enjoying my own life. I don't begrudge that at all, I just don't know how to stop it. I'm worse then a mother cat!

I know that the toughest challenge is still ahead of me, and I am up to the task, but I could sure use a shoulder to cry on now and then! Thanks for reading my story. Good luck to all of you.

Margaret Daniels
Mags1745@aol.com

3/7/04

I know it is not easy for my parents. My parents are 84 and 86 years old. My dad called on the phone before 8 o'clock in the morning to ask us, "Where is my wife? Did she come down to your house. I can't find her." We told him to please calm down. We suggested she may have taken the two dogs outdoors. He said he went outdoors and couldn't find her. My husband and I went up to their house 25 miles away. We pulled into the driveway and there was my mother and father, outdoors with the two dogs by the garage. Dad did not even mention that he called. My mom doesn't even drive the car. I worry about my mom and dad! Please can you give me any suggestions?

Beverly Leneker
roseware@capital.net

3/3/04

My mother, after three years of caring for her, has decided that I am mistreating her because I don't let her spend money that she doesn't have and prepare her special meals at the snap of a finger. My mother is legally blind, is incontinent, barely mobile, cannot cook because she forgets to turn off the stove. She cannot be left alone for more than three to four hours a day. I take care of her animals, my son, the home and manage the bills with what little funds we have. I am her cook, her assistant to baths and dressing, her chauffeur, her house cleaner, and her financial coordinator. And I work full time.

I do have a partner that helps when he can, but my mother is all mine and I can't expect him to do things that are ultimately my responsibility. She has been very happy with me up until I had to leave town for training where she found a woman who specializes in reverse mortgages. My mother has also given me her home. Now my mother has forgotten everything that has happened, which, of course, was all discussed with a lawyer before it occurred. This woman has convinced my mother that she can change everything and get the home back so that she can, in turn, sell it or do a reverse mortgage and get a check to do with as she pleases. Once adult protective services determined that my actions were not deceiving or misappropriated, this same woman has now become my mother's advocate to better health and she has convinced my mother that the information the state workers discussed were untrue (my mother wanted her at the meeting).

My mother is now going to go to assisted living where my care and love for her will not be questioned anymore. The morale of my story is that you can't do it all yourself. Had I researched the support groups and networks when I first started, our home would not have been a victim to exploitation. My mother would probably at some point have gone to assisted living but as a joyous new-found independence rather than a choice she no longer has because of too much tension due to life's changes in ability and reason; all caused by a stranger and stubborn will of the aged mother to keep her independence at any cost. There is nothing I can do and I feel very betrayed and helpless. Everything my mother ever wanted in her old age I tried to provide. I failed and I hope that God watches over my mother because I give up.

Georgianna Daniels
georgie_daniels@hotmail.com

2/29/04

I hate being the "caregiver" there, I've said it. My mom is 78, a widow, and I am a single, only child (47). It's been just the two of us in the family for over 40 years and I have been helping her financially since I was 14. I have a full-time job, but little saved.

My mom has vertigo/balance problems and hearing loss. Her mind is clear, more or less; she just had a checkup but more and more I have been involved in her day-to-day care instead of enjoying her company. I am also seeing signs that worry me, but I have been told I worry too much, so I don't know when to worry and when to tell myself to shut up.

Mom lives in a HUD-subsidized apartment building for seniors not far from me with many resources in house, but she will take none of it. After a fall last year she I got her a Lifeline pendant which was used last week, when she slipped and fell - again. Today she called to say she left the water running last night and flooded the apartment and wasn't even aware until the super rang her bell. Her take on it is to shrug and say "stuff happens" and move on. Still she is leery of strangers so I do all the food shopping, bill paying, and escorting to doctor/hair appointments. This is doubly hard since I don't drive.

I feel very alone in this. What few friends I have have their own problems or are not at this stage of parent care yet or have siblings and/or mates etc to lean on. I don't. I would like to know if there are groups for adult children of aging parents in my area.

Claudia
wordwench@earthlink.net

2/23/04

My mother was diagnosed with multiple sclerosis when I was 18 years old, but her illness actually had begun eight years earlier. I was the youngest of three children (all girls). My sisters were on their own, and I felt compelled to help both of my parents. My dad remained my mother's primary caregiver until his death from cancer in 1995. It was then the entire burden fell on me. It wasn't my choice; my sisters told me I had to do it because they already had jobs. Since then they have given me no financial support and very little emotional support.

I have never been able to have a job outside of my home, and I have very little money. I cannot ask my sisters for anything, because I know they will turn me down. In the meantime, I am lonesome, depressed, and at times I just want to give up and leave here. But I know my mother is depending on me to keep her at home. Her condition continues to deteriorate. Thankfully, a local hospice has taken over my mother's case, but that only gives me limited time off. I have no friends to talk to and very little time to call my own. I resent my sisters for dumping all of this on me, while they freely live their lives and have financial security. Sometimes I feel guilty for even thinking such things, but at the same time I feel my life is slipping away from me. I am 42, and I want to go to college and become a writer. And that's my story.

Sharon
alleghenysweetheart@yahoo.com

2/10/04

I am the youngest of 4 sons (46 years old). Our parents are in their early 80s. They have lived in their home for 57 years; it is a large home, many levels, lots of work etc. For the four of us to agree on what is the next best step for them is very difficult. My mother wants to sell their home and add a "granny flat" addition to my house. For this I would need money from the sale of their house. How to talk with the brothers about this is hard because I would benefit in the long run.

I am disabled with MS and currently use mobility aids to get around; i.e. walkers, electric scooters, golf cart. My father walks with difficulty and I know this will not get better. My mother has tripped and fallen on stairs and broken her arm. I feel it would be a good move for a lot of reasons. My home is totally flat. I am home almost 24/7. I am the only one that is still married with children at home. My wife works from home and is very supportive of the idea.

I know this is a big step for my parents, my mother wants very badly for everyone to be happy. Whatever money my parents have should be spent on their comfort. The fact that I will benefit some day (maybe) should not be the issue. How do I communicate this to the brothers?

Brian
oneblh@yahoo.com

2/9/04

If you view life as a roller coaster, then mine has probably been one of the wildest rides ever. Many would say that for most of my adult life, I lived in a Norman Rockwell painting; great husband, perfect home, three wonderful kids and healthy happy parents and sister.

Seven years ago my husband died suddenly in a very ugly way. The last of my kids had just flown the nest and I was achingly alone, after 28 years of being wife and mother. I was 50. I moved close to my parents and younger sister, also a widow. We became unusually close, both emotionally and physically, seeing each other almost every day, working together and vacationing together.

My 83-year-old father, a picture of perfect health had a stroke on New Years Eve, which has left his left side compromised as well as some speech and incontinence problems. He spent a month in acute rehab and is now home. My 80-year-old mother is absolutely becoming unglued, thinking that she has to care for this man. Although he still has his sweet disposition, he is a little odd sometimes. She is so strong willed and a "doer" that she finds it impossible to have the patience to let him do things himself.

I get a call every morning with a frightening story about the night-time hours. I rush to their house, usually to find my dad happy and un-bothered, and my mother sitting at the kitchen table worried and wringing her hands. If I spend the day with them, they're both fine. If I leave, everything falls apart. Same goes for my sister. We have the resources to have help for them but they both refuse, saying they'll make it on their own.

I can't sleep, can't organize my thoughts well, can't find the energy for anything fun, and am running the risk of losing the man in my life because I'm never available. The only time I relax is when I should be asleep ... but I can't go to bed because I know what's facing me the next morning.

I nursed my husband through his final illness and had the strength to deal with all the horribleness of that without a breakdown, but this is almost too much for me to handle. I'm sharing these duties equally with my sister, but she seems to be able to go on with her life as well. I feel guilty, ashamed, and oh so awfully tired. Part of me says this is payback for all those wonderful carefree years of my youth.

Holly
holly@mairanse.com

1/31/04

I am a caregiver who is a 48-year-old woman. My mother of 86 has been diagnosed with advanced stages of COPD and emphysema and has been living with me for the last 6 months.

To begin my story, my mother was divorced when I was 8 years of age. Raising 5 children herself on a woman's meager income was a skill in itself. My mom was always a very independent person until about 1 year ago. While she was living at my brother's home she fell and broke both of her legs. Now mom has a difficult time getting around. To acerbate the problem, her lack of air going into her lungs takes away her balance and strength.

I get so frustrated sometimes, because all I hear is how she doesn't feel well. When I ask where she doesn't feel good, she can't tell me. Sympathy? Possible. I can't help her other than taking her to the hospital. She's been in and out of the hospital the last 2 months four times. That makes every other week, she spends usually one week. She is currently in the hospital now with pneumonia. She also gets very angry, because she has to pay a $350 deductible each time she is admitted. Let's see she's up to $1,400 now. She has a GAP insurance which has paid all her medical bills except the deductible. Oh, let me mention that she was born between 1917-1921 so Medicare reduced her income by 20 percent. She isn't making very much each month. She is considered poverty level.

Because of her small amount of savings, she doesn't qualify for most programs and has it in her head to "leave" something for her children so she does without.

She doesn't want to live like this anymore and can't understand why God is allowing her to live when so many are "blessed" with having a heart attack and die. I can't answer her questions and continuously tell her that God isn't ready for her yet. I pray almost nightly that God will take her, but I'm not sure if I'm praying for her will or mine.

I love my mom, and remember her telling us when we were kids that she "never wanted to be a charge" on us. As a rebellious teenager she'd say that her and I could never live together. I would say good, because I didn't want her to live with me anyway. Well, guess what sometimes we get what we ask for.

If I can give you each a word of encouragement. Each of you are doing what's right and everyone of us will get a special reward in heaven knowing we unselfishly cared for our love one. I'm looking forward in joining a support group too.

Cheryl
stec2002@msn.com

1/24/04

I'm lisa and my grandmother has Alzheimer's. She is rapidly getting worse. She is the sweetest lady I have ever known. It's so hard when I hear her talk about really sad things that I know didn't happen to her. She has a daughter named Rona. Rona comes to see her and then my grandmother gets upset because she says she wants to see her other Rona. She says that her other Rona is only 5. She has also started kissing my grandfather on the mouth very often now and that bothers me. Sometimes she asks if she can sit in his lap. She is starting to think that the are very young again. I have three kids and a job. It's so hard leaving her to go to work. My family wants me to put her in a home and I'm not ready. I'm starting to feel like she is my baby. I am scared when it is time for her to go in a home I will not be able to stand it.

Lisa
lisasden@aol.com

1/23/04

My grandfather is 79, and about a year and a half ago I noticed that something wasn't quite right with him. He would show up at my home unexpectedly and not have a logical reason for being there. (He lives a good hour from me.) I also noticed that he would "trail off" as he talked to me; he couldn't think of the right words to use to complete sentences. I brought this to the attention of my aunt and uncle; my mother has passed on. They did not seem too concerned, nor did the rest of my family. At any rate, shortly after Christmas, he came down with pneumonia, and had to purchase several different types of medicine. My children and I went for a visit shortly after this, and he asked me to borrow money, because he did not have enough to buy his medicine. I asked questions because this was nothing like him; he has always been responsible with his money. He told me that he didn't know what happened to all of his money, that he just knew that he needed some for medicine.

After that I talked to all of my other family members, and it turns out that he has been borrowing money from everyone. This is totally out of character for him. After more investigating we discovered that he has gone through ALL of his savings, he has taken out loans at his bank, he is overdrawn in his checking account. Basically he has been giving his money to a young woman, who we believe has been taking advantage of him. There has also been other behavior changes in him, he leaves the house and says he's been one place, but when we check, he never been there at all. We believe that he in fact is in the first stages of Alzheimer's, but we have not taken him to a doctor yet. We did however obtain a Durable Power of Attorney so that we can at least prevent this woman from taking any more of his money. We are in the process of deciding what to do next. We have no idea how bad the financial situation is.We need help, if anyone out there has any information we would appreciate it.

Amy Simpson
SimpsonSpaw2@aol.com

1/22/04

I have read these stories and they are very sad, but inspiring to know that people will uproot their lives to help their parents. My son and I and my sister live with my dad. I am a single mom and it is easier and less expensive to live with dad. My sister quit her job about 20 years ago to care for my mom. When my mom passed away 12 years ago, my sister went back to work. I always worked up to two years ago when I was laid off. I went to school, paid for by the government. When I finished school, I started having neurological problems, so now I am not working.

That was in August. My dad has had Parkinson's disease for about five years now, he is 84 and up to two weeks ago we could come and go as we please. All we had to do is get his meals and take care of the house. It was two weeks ago when dad (in the middle of the night) cooked a school book (my son's) and a box of tissues in the microwave. I took him to the doctors and now we do not leave him home alone. We shut off the stove at night and we have unplugged the microwave (although it is now burned out). We also care for his meds now. He has been very independent up to now.

Dad does not want to go into a nursing home, hopefully he won't have to. Since I am at home most of the time, I was wondering if anyone knows of any organizations out there that will pay a caregiver. I am about ready to lose my car, and I can't pay my credit card bills. Thank you for reading my story, I know it is very long.

Susan
spd@gwi.net

1/18/04

My mother was diagnosed with Alzheimer's about 2 years ago. When my father passed away in 1999 from lung cancer, he told me on his deathbed, "something is wrong with your mother" and was afraid to die because he was so worried about her. I took his hand and whispered, "it's ok dad, I will take care of mom." He died a few hours later. Of course, I had no idea what was wrong with our mother and no idea what the cards held for me in the future as her caregiver.

Now, almost 5 years later, I continue to live with and care for my mother who is entering the late stages of Alzheimer's disease. I now find myself on a roller coaster ride of emotions each day coupled with many sleepless nights. Luckily, my father had the foresight to invest his savings and to purchase long-term-care insurance for her several years back. So while money is not an issue for me yet regarding her care, my own sanity and health are issues I am fighting to maintain during this very difficult time.

Recently married, I am a 46-year-old woman with a doctor's degree in chiropractic. I invested much of my time and money into my education over the last several years (I am what some would consider to be a late bloomer) and then met and married a wonderful guy after I graduated from chiropractic school. But caring for my mother has forced me to put my career on the back burner and I find myself giving my mother more attention than I give to my new husband. All of this often devastates me emotionally and often makes me feel resentful and short-changed. I have two older brothers who live too far away to help and I feel as though the weight of the whole world is on my shoulders much of the time. I bounce back and forth between compassion for my sick mother and times when I wish God would take her so that we could all feel better (including my mother). Then, of course, I feel guilty for feeling that way.

I have hired caregivers to help me so that I can begin to get on with my life more or less. And that has been very helpful in alleviating some of my stress. The biggest problem I'm dealing with now is sleepless nights because the disease has advanced and my mother can no longer sleep at night like a normal person does. So I am up a lot to make sure that she doesn't fall (which she has in the past) and hurt herself. So my next step is to either hire a nighttime caregiver to stay up with her so we can sleep, or to place her in a home. The thought of placing her in a home rips my heart open and I feel racked with guilt at the thought. But I know that I cannot go on without getting sufficient sleep because ultimately, I will be the one who becomes ill. So I am currently working on resolving this problem.

On the upside (yes, there is an upside to caregiving) I feel blessed to be able to share the days with her that she has left here. My mother was a very loving, giving wife and mother, a wonderful parent and example for me. So it feels good to give back to her and share moments that I would not be able to share with her if she didn't live with me. I still get to experience the pieces of "my mom" that are left from time to time, the moments when she looks at me and tells me that I'm her sweet little girl, the moments when she remembers me and we laugh together.

Kathy
kderosa@hotmail.com

1/13/04

For close to ten years I was my mom's primary caregiver. I was single and lived at home with my mom and my single brother. He paid the bills but didn't do much to help with her physical care. Not only did she have a number of medical problems but she was also suffering with severe depression. Living with a severely depressed person is a trial.

I did her physical care, took care of her medications, took her to her appointments (which caused no end of hassles at work), took care of her when she was in the hospital (I had 2 1/2 years of nurses' training), did the cooking, cleaning, laundry, took her places, etc.

When I fell in love with a man from Maryland and wanted to get married and move, my mom was a handful! She told me "I would rather see you in a coffin than in a wedding dress." Tom took over her care. I stopped hearing from them a week before my wedding. My Mom died less than a year later, having been in and out of geriatric psychiatric units, nursing homes and an assisted living facility. My brother did all that he could, visiting her every evening and bringing her home when he could. I knew nothing of this until my brother called me at work and said "mom's dying."
She died before my husband and I could drive the 500 miles home.

I moved in with my husband and his then 78-year-old father. Dad has end stage emphysema and is on oxygen 24/7. He spent most of June in and out of the hospital. We make sure that he eats well, takes his medications,sees the doctor, etc. I now realize that I have to keep any additional medication out of sight. He was on an antibiotic, one a day for 10 days. He was supposed to let me give him one at bedtime. He went through 10 pills in three days. He told me "I took my pill."

So here I am, back in a caregiver position. I love my father-in-law but sometimes it feels like "out of the frying pan, into the fire." I remember my mom saying "You won't take care of me but you will go down there and take care of his father." Guilt!

Now two single sisters-in-law, and their two cats are living with us. One sister-in-law has multiple medical problems. Need I say more?

Both my husband and I are on medication for anxiety and depression. He is 50 and I am 48, no children. We've been married for a little over three years. During that time I was estranged from my family, my mom died, we have both been unemployed, there have been injuries, accidents surgeries, and therapy.

I was laid up from August until recently with plantar fascitis in both feet. Bedridden, in a wheelchair and big, bulky splints, therapy, medications....now I am back in shoes and can walk. As soon as I could be in shoes and up and around my father-in-law started asking me when I was going to work.

I got the clearance from the specialist last week and have been job hunting ever since. If my feet hold up, at least I will be out of the house and away from the stress. My husband, unfortunately, has a disability in his back and can't find work.

I am sure that many of you would gladly trade places with me. You are a caregiver out of love and necessity. It is not an easy task. God bless all of you and give you strength, renewed love and the patience of a legion of saints!

Sheila Stunkard
thenubble03@yahoo.com

1/9/04

Hi, my name is Brenda and I am taking care of my parents here in California. I have been here about a year now. When I first came they were having trouble making ends meet. Mom had cancer of the lung. She is 74 years old. She had surgery early in 03. The doctors say they got it all. Dad is 77 years old. They cannot be left alone, so I moved down from Portland, Oregon so they wouldn't have to go to a home. I just moved a small trailer on to their land next to theirs with an intercom in between. This seems to work out well. Please understand, my husband and I love each other very much but he is stuck up in Portland, Oregon in a job at the United States Post Office. And he is taking care of his mother who is almost 90 years old so she won't have to go to a home. There are lots of other problems, but this is just a start! Thanks for letting me ramble!

Brenda Redfern
bfr@elite.net

1/7/04

My mother is 85 years old and independent. The twist here is that she has cared for my sister, who was born with Downs Syndrome, since she was born 46 years ago. My sister was diagnosed with Alzheimer's a year and a half ago and way beyond what my mother can handle. We have been trying to get her into a nursing home with little luck. All have year-long or longer waiting lists. I'm worried that my mother will die trying to care for her much longer. My mother would like to go into assisted living but she cannot until my sister is situated. I need help. Thanks for listening to my story.

Linda Sellmer
lindasell@mindspring.com

1/5/04

My father recently died. He was in a nursing home. I feel extremely guilty having placed him there. I take care of my mom who has Alzheimer's, and has had several mild strokes this past year. I have lived with my mom for about 6 years. She was diagnosed with Alzheimer's about 2 years ago. She has become incontinent and is nearly wheel-chair bound. She has to be assisted in all of her daily living areas. I have just very recently asked for help, and have hired a CNA for Monday, Wednesday, and Friday from 1-5pm. This will enable me to be able to keep my shop open.

Some days I am very tired physically and mentally.
I feel guilty even when I am sewing or at my computer. I have her in bed at these times, so I try to get some time to do a few things for myself. My main guilt is, of course, that I placed my dad in a nursing home, and he did eventually die there. I wish I had it to do over again. I would try to have him at home along with my mom.

However I know the realities, I am not Super Woman. I just miss him so much, and feel so guilty that he died in a nursing home, and not at home with me where I could have been with him to the very end. His roommate had died about 2 months earlier, so he died alone in his room at the nursing home. I had just been to see him, and had a very good visit with him. However that does not make this PAIN in my heart go away. I feel as if my sole has a deep black hole residing in it. I try to keep up my spirits for my mom's sake, but I am constantly reminded of him, and I feel so sad that I will never see him again. I am a believer, and pray daily that I will see him again in a heavenly form.

Maybe someone out there has a simi liar story, as I am sure there is someone. I suppose I am looking for some magical words to make me feel better. Thanks for listening to my story.

Nanci Cox
nonya.dance@wcc.net

1/1/04

Hello everyone. I will start by telling you how I became a caregiver. On January 27, 1997, I was at the county sheriff's home for his birthday party.

I started getting pages on my pager. I thought they were a from a friend out of the county because of the prefix and was not going to call someone long distance from someone's home. I was only at the party for about 35 to 40 minutes and left and stopped at another friend's home.

on the way home another page came in from a friend that was local and he had 911 at the end of the phone number. I called him and he told me to call the number that I had received earlier right away, that something bad had happened and it was my neighbor calling from his cell phone. So I called and got the shock of my life. My neighbor, whose name is Ed, said someone here needs to talk to you. He put on a Florida highway patrol officer. We spoke a few minutes. I have known this officer for many years he asked me if there was someone there to drive me to the hospital and I told him there was. He asked to speak to them. It was my girlfriend he spoke to. She gave me the phone back and I asked him what was going on. Then the ball was dropped. My Dad had been in a fatal accident.

So my girlfriend drove me to the hospital. We were sent to the ER where a nurse and a different FHP officer took me in this little room and I was told my Dad was in surgery. I said I was told he had passed away. The trooper there told me that they had my Dad covered up on the side of the road when the rescue got there. He had no heart rate. One of rescue workers knew him from coming to the house and that he was diabetic. He gave him a shot of glycogen and got a heart rate. My Dad's blood sugar had dropped and someone called the FHP saying a drunk was running people off the road, but before they could get to my Dad, he hit a car head on. Both cars were going about 45 miles an hour. My Dad was thrown from his truck and a truck behind him ran over him. He broke both arms, pelvis both legs and had a severe head injury. He was in surgery to put his foot back together, which as nearly cut off. He was in surgery only about 45 minutes before they had to stop and take him to ICU because his vital signs were dropping.

My Dad weighed 175 at that time. They let me go see him in ICU that night. I told the nurse that was not my Dad. He looked like he weighed 700 pounds. He was in ICU for 10 weeks, then moved to a regular room for a week and then was taken to a rehab unit. He ended up losing his leg where his foot was so bad. He was in rehab for 7 months. After 6 months at home, he is doing well with a walker to get around and we find out he has prostate cancer. He goes through treatment and did very well. This was in 1999. In 2002, they found colon cancer. He went through surgery for that, but did not want chemo. The cancer was in the lymph nodes and has now spread to the liver. I take my Dad to all doctor appointments, fix him three meals a day and snacks in between, take blood sugars and give all meds. I buy any thing he needs, take him out to friends and so on. At this time he is in rehab. He just got out of the hospital. His big toe got infected but the doctor said he was not getting good blood supply to his foot, so the doctor took an artery from his upper leg and put it in his lower leg. He has been in rehab for a little over a week now. I brought him home for Christmas, just for 4 hours, though, because they are giving him IV antibiotics.
The nursing facility he is in is doing a good job with him, but you know how that is they can never do as well as you would like.

Caregiving is not a fun thing. It is harder than most jobs people have in everyday life to see one of your loved ones go downhill is very depressing. I just think that we caregivers will be repaid in a different way down the road. I got married in 1998 to a wonderful woman that understands why I do what I do. She never got a honeymoon, but maybe one of these days. I don't leave my dad alone over 2 hours at a time do to his blood sugars, which can drop for no reason. Let's all hold are heads high! I will say a prayer For all caregivers.

WILLiam R. Headley
killroys@aol.com

1/1/04

In 1994, I married a wonderful man. He was estranged from his father, who left his life when my husband was only 5 years old. My husband was raised by his mother and a wonderful step-dad, and had only occasional visits and phone calls with his dad.

Fast forward to 2002. My husband called his dad on Father's Day, and they had a long conversation. (Dad had remarried a woman with four daughters, but she passed away in 1991.) The daughters were grown with familes of their own, and dad was living alone. My husband suspected dad wasn't doing so well. Being 1,300 miles away, he decided to call his step-sisters (who lived near dad) to check up on him. At Christmastime, my husband decided to fly out and visit dad. His concerns were realized. Dad was not caring for himself. He refused to allow "outsiders" in to help care for him, so my husband's step-sisters pitched in ... a little. In the meantime, my husband and I began to discuss moving (from NY to MN) to take care of him.

By June 2003, we had begun packing and preparing to give up our careers. Bad new arrived by a phone call. Dad had fallen and broken several ribs. After his hospital stay, he was transferred to a nursing home to recuperate.

On July 15th, my husband received a call from one of the step-sisters. The nursing home had exhausted dad's insurance benefits and stated, "If a family member did not come take him home within 48 hours, they would attach his assets." Despite the fact that he and I had never met, I agreed to fly out the next day. I never knew what "for better. for worse" was going to cost me.

Dad was so sick, he was only home 4 days before I put him in the hospital. He was diagnosed with pneumonia, but he also has Alzheimer's, diabetes, hypertension, chronic heart failure, renal insufficiency, osteoarthritis (severely limiting his mobility), glaucoma and urinary incontinence from the complications of surviving prostate cancer. To say that I did not know what I was in for is a serious understatement.

Had I not come as quickly as I did, I'm certain we'd have been coming out for a funeral within a matter of weeks. The only blessing to be found in dad's needing to go to the hospital was that his house was so dirty, I was grateful to be able to clean without having to provide care too.

Dad came home from the hospital in mid-August, and if my husband hadn't arrived (with a U-haul full of our belongings) in early September, I think I would have gone crazy.

So now, my husband has found a job while I stay home and take care of dad. Changing diapers, giving medications, cooking, cleaning, and sleeping with a monitor in case dad wakes up - that's my life now. I used to have a good job, a car and an active social life ... that's all 1,300 miles away. If not for church, the only time I'd see other people is at the grocery store.

In our favor, Dad is personable and social. His quality of life has improved 1000 percent. He and my husband are very grateful for my ability to adapt and respond to this situation, and I thank God that I was able to make such a difference in dad's life. However, I'm lonely and homesick. Twenty-four-hour supervision sometimes seems like a prison sentence. Even when my husband can take over (evenings and weekends), I feel trapped here. It's getting better, but oh, so slowly. Dad is now going to daycare 3 days a week, 7 hours a day. I'm so not used to being so broke that I've been looking for part-time work, but I haven't found anything lucrative enough to be worth the effort.

My heart goes out to my fellow caregivers. The stories given here testify that so many have it worse than I do. So many are caring for ungrateful family members, and/or having to fight with other family members over care issues. I appreciate the opportunity this site provides to commune and commiserate.

Lisa Littlejohn
lisalittlejohn@webtv.net

 

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