Hi. I'm new to this area of this website, but hope to find some information, or at least some comfort. My mom has CHF, A Defibrillator implant for electrical cardiac problems, and has 3 stents in her legs b/c of bad peripheral artery disease. She does not follow doctor's orders at all. She's still smoking a LOT and her routine is to sit at the kitchen table most all day w/out elevating her feet above her heart like the doctor ordered. Now she's having a lot of pain in her right foot, after having complications from her last cardiac cath/stent placement. She got a hematoma and the nurse kneeded this hematoma to break it up, causing my mom extreme pain and leaving her right leg, groin and abdomon very black and blue. I'm a nurse but am on disability b/c of chronic pain conditions. I worked in a busy ER and on a cardiac/telemetry unit when I was working. I feel guilty b/c I'm getting frustrated with my mom b/c she won't follow dr. orders and then complains of extreme pain when she knows the doctor is not available. She refuses to go to the ER. I'm the sole caregiver for my mom and s-dad who are both in very poor health. My own health has suffered badly from buring the wick at both ends, and although I'm totally burned out, I do love them dearly and fear I'll soon find one of them 'not breathing'... I have PTSD from finding my real dad dead in Dec. 2000. His death was totally unexpected. I have no money to get a place of my own and my mom and s-dad absolutey refuse to allow outside help to come in. They see how much pain I'm in and how stressed I've become ( I can't eat, can't sleep, have lost 30lbs in the past 4-5 months, have panic attacks and major depression), yet they won't allow anyone to help them but me. I'm at a loss and afraid.
Any suggestions, advice, encouragement and/or support would be greatly appreciated. I'm really scared.
She had other serious health issues though. What I suggest to you is to find a way out. I know you probably don't want to because you do love them but honey if she isn't going to take care of herself than why should you? The step dad,what is his health problems? does he have dementia or some other reason why he needs 24 hr supervision? You have been through somthing very tramatic to you and I would hate for you to be put back in the same position.Are you really sure you have no way out? If you are disabled can't you find a disabled apt. somwhere that go by income? I know we live in a small comunity but they have an elderly and disabled apt. complex that goes by the income. In many cases you can get in one very inexpensivly. You don't need the added stress.I want you to understand how dire it is that you seek some help. If mom is mentaly compatant and she chooses to not take care of herself there is no reason why you should risk your health trying.
If they can't be left alone can you make your arrangments leave and call social services where they live?
I know what you are going through, as my mother had CHF, unstable angina, diabetes, osteoartritis, degenerative spine disease, strokes, blood clotts, frequent falls, chronic pain, etc..to name a few things. For swollen legs and feet, you should get her to elevate her legs. Are you sure that she does not have a blood clot? I am not a doctor, but after caring for my mother for over 20 years and living from one crisis to another and living in hospitals, I was able to learn and recognize the signs and symptoms and get her to the hospital. When I had difficulty getting my mother to comply or go to the hospital I had a friend of hers that I would sometimes call, or I called her doctor out of concern. Can you not speak to her doctor? Maybe she needs to have a doppler to check for a clot. Pain and swollen legs is also a sign of a clot, not just CHF, especially if she is not moving. My mother's CHF was so severe that she was on a salt restricted diet and fluid restiction and on 360 mg of Lasix a day. This of course caused kidney problems and she was incontinent and refused to wear depends. My mother was also at risk for falls and refused to use her walker. I am tellimg you all this because I understand. Her biggest problem is that she had no insight into her disabilities or she did not want to accept them. I know how frustrating it is...you never sleep...Heart disease is unpredictable...one minute someone is fine and the next they are not. You need to get some help. I wish that you had a healthcare system similar to what we have here (in Canada)...it is not perfect, but at least you could get a little respite, even if it is for an hour or two a day, You have to try and eat and sleep, because if you don't, as you know, it catches up to you. That is what happened to me. When the caregiving ends, your body relaxes. You are doing a wonderful thing,,,,don't let people take advantage of you. My family took advantage of me. The problem is you love your parents and family so much, that you forget about yourself. If you get sick, who will care for your mother? In addition, when you see someone you love almost die, as with heart disease, it scares you and you live in fear that the person will die, that they will die before you get a chance to stop it or prevent them from dying alone, I know that is probably how you felt when your father died...you are still grieving his death. You have to remember you did everything you can...you are only one person and you can only do what you can! Being a caregiver is the hardest job, one of the most important, yet the most thankless. I wish I could do more to help you than just offer my ears, my love, my encouragement, my experience and remind you that you are not alone. I wish that I had access to these support groups when I was caring for my mother (I cared for her for over 20 years)...I am glad that you are looking for support, you need it. Is there anyone who could talk to them (your parents) about allowing some relief? Sometimes when people are ill and or dying, they can only think of themslves. They get angry at the people they are closest to, especially if they are losing their independence and they are afraid of strangers, because a stranger would probably not let her smoke. They become very scared and they don't want to accept the decline. They don't want to give in to their illness. It is both good and bad, as it keeps them fighting, yet it also puts them at risk and causes you more stress. My mother was like that. At the end she mellowed, as she realized I was always there for her. It also took until then for me to see that I could not change certain things, but I would try to find ways to adjust, Do you have any friends or family? You need to do something for yourself and not feel guilty!...Would your mother's doctor speak to your mother and/or step-father...Caregiver burnout is very difficult to recoup from. I am a single mother of young girl and caring for my mother destroyed my life...although it was the right thing and the only thing to do, it should not be this way. I have lost everything and my daughter and I are homelss now, but a wonderful friend of my mother's has taken us in until we can get on our feet and fight back. I am ill now from all of the stress and fighting a legal system that does not recognize my rights. i have met others from across the country who have experienced or are experiencing the difficulties facing caregivers and the lack of government support. I know what it is like to be poor. I am fighting for change and I only hope that through my experiences and my voice I can help others. I hope you are feeling a bit better knowing you are not alone. You are a deserving person worthy of great things...don't lose yourself...you still have a lot of living!!