Caregiver Stories

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.com

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