Note To Self : Self - Treat this new life as the beginning of a long journey to the most beautiful place you have ever been = yourself. Treat yourself with the utmost of care but not so delicately that you can't bend as do the branches of a tree. Remember God did not make you to be broken....
I have been asked out to lunch by a handsome, very nice, old fashioned kind of guy. Yikes! Should I go??? I sort of want to. It's been so long since I have been taken out and treated like a woman and not a caregiver..............What do you all think?????? He is 10 yrs older than me, I like that, he's retiring in the Spring, I like that, I mean helll it's only lunch right????? Aghhhhhhhhh
The Bastard, called me tonight, and said HE wasn't ready????? Wants to wait till he retires in the spring. I hate men. Lets face it, Life Sucks, then You Die! So sorry to disappoint you all. S
What did he expect to have for "dessert" after that LUNCH, Susan??? I cannot believe this! I believe you were spared a BULLET here, my sweet friend. I have my fingers poised on the keyboard to write something else, (meaningful and profound) and the words just won't come. I'm simply agast!!! Just curious, where did you meet this prince of a guy?
Sorry, I'm new, but just to add: You were being very brave. He chickened out. Kudos to you!
My husband suffered from dementia for 14 years, a rapid decline in his last three to four years. His dementia was brought on by Lyme Disease, which can affect the brain and cause lots of neurological deficits. He died at age 57. The grief and loneliness, and outrage I feel can be overwhelming, even three years later. I have watched my friends who have been divorced grieve, even if they feel as if something, not someone, has died. But they seem to eventually move on and find romance. I guess I am still too angry. Even though he had lost the ability to speak and needed help with being fed and so many other things, inside, the spark and spirit of who he was was still there. I could still hold him and hug him and hold hands. Not that at times I didn't want it to just be over. I miss that touch, although it helps that I can hug my 16 year old (and he lets me). I am in awe of those of you who have been able to get past the grief and anger and begin to open up to new relationships. It's wonderful, it's life-affirming. So again, kudos to you!
BarbaraNC, I am so angry at so many things, I can't sort them out. Please help me understand my anger better by telling me what causes your outrage and anger. Is it that you felt so much alone? Or that the disease wasn't fair to your husband, or to you? Or angry that you couldn't stop it?
Barbara welcome to the family. I agree-death is so final. No hope for anything. As a recent widow my emotions are all over the place. Please stay here with us. We have been there and done what needed doing.
Barbara, welcome to our circle. Don't forget to add a Star * at the end of your name. This lets every know that your loved one has passed on to a better place. Life is cruel, grieving is hard work. I now think I'm glad that the jerk cancelled our date. I just watched our wedding video for the first time since Jim passed away in March. It was bittersweet. How healthy and young we looked, (pretty good, for 55 and 44, lol). Wow, what this disease does to a person. I have aged soooo much. There are days when I think, "OK, I'm good" then the next day something happens and crash. There is NO Pattern to the Stages of Grief. Those stages bounce all over the flippin place! You never know from one day to the next what stage you will be in that day. I'm so glad you found us. Welcome to the family. Arms around, Susan *
Mary75--You asked about what causes my anger. Whew! Do you have hours? But to be brief, some of the anger and outrage is that my husband had to die so young and suffer so much. He overcame so much in his childhood and made a success of his life, only to have it ripped away so unfairly.He was so overjoyed to have a son, but did not get to see him grow up. But most of my anger is directed at a medical establishment and healthcare system that needs to be dismantled and begun fresh with new ideas and thinking outside the box. Is there a Weather Underground for those of us who would like to take the medical establishment apart? I would join it in a second. My anger is directed at the doctors and nurses who saw my husband as a thing taking up space rather than as a person with a soul and yes, with a mind. My anger is directed at the medical professionals who are so arrogant and full of their own self-importance when they lack even the most basic knowledge of the drugs they prescribe and never bother to research anything or consider any opinion other than their own, despite the fact that family members have been living with dementia and their loved ones 24/7 for years. My anger is directed at the doctor who, after observing my husband, asked if I would consider donating his brain to science when he was dead, as she would love to have his brain to study. My anger is directed at the social worker who said, while my husband was still walking and eating and communicating with me, "He died a long time ago, so what does it matter?" as if a dementia patient is nothing. My anger is directed at the doctors who know nothing about the drugs they prescribe and won't bother to read all the research papers from PubMed and the government's own websites--even when I provided it--about the dangers of specific drugs for persons with dementia and other neurological deficits and which drugs were safe. Let's just say that perhaps one out of 40 or 50 nurses was caring and concerned, if ignorant. Let's just say that one doctor out of perhaps 100 actually knew anything or was willing to admit he did not know everything. Let's just say that I did not meet one, not one neurologist, who had a clue. I also found that neurologists knew nothing or next to nothing about drug interactions and drugs that caused horribly debilitating side effects and movement disorders. As you can see, I can go on and on. Don't get me wrong--there were lots of wonderful people we met; however only two or three were from a medical-related field. The rest were ordinary people we met wherever we went, whether bus drivers, stock clerks, lawyers, plumbers. All had a story to share of loved ones with dementia or some other medical condition, all had words of kindness and concern. Some people offered help or services. The people who worked at my husband's day care and the clerks at my local banking branch were wonderful and came to my husband's funeral. So many good people, too numerous to count. These are the people I am grateful for. The medical field is a different story. The whole system, along with the insurance industry, needs to be torn down and rebuilt with some sense.
i am so sorry you have all of this angst inside you.I can see your awful pain. I pray that you will find someone who can help you work through it. You MUST, for your own sake, and that of your children. My dear, I, too, lost a wonderful husband, who was so eager to live longer. His disease was not caused by a doctor nor was it made worse by a doctor.
We had the personal means, privilege and opportunity to travel across the country and see many doctors as the symptoms of his illness would occur. From Mayo Clinic to the Houston Medical Center. His latest neurologist - at the Houston Baylor College of Medicine, is known all over the world and has written articles on the disease, has sat on Panels at the World Congress on Altzheimers Disease. They all knew their business. In spite of this, he died. He died because no one EVER recovers from Alzheimer's Disease. In spite of what we all read in newspapers..articles
I worked very hard on the above post and it was twice as long. It's not finished here. I don't know what happened.
I'll try to finish it.Barbara, because I wrote it from the very depths of my heart. (sigh). What I want to say and will try to express in words, is that together, we will ALL get through this. nancyb*
Hi, Nancy B--sorry if I shocked you a bit. My husband died three years ago and I have moved on. However, I have not forgotten. I do not want what he went through and what I learned to be in vain. Yes, I am really, really angry. And yes, the medical system was to blame for his death. He died from adverse drug reactions. According to the Journal of the American Medical Association (JAMA), over 106,000 deaths occur in hospitals because of this. Adverse drug reactions are the 4th leading cause of death in the US today--read the articles and the research. Would my husband have died from his dementia eventually? Most people do not die from dementia itself--they die from infections, drugs, immobility etc., that cause complications. This is clearly spelled out in the literature. My anger is directed at the ignorance, arrogance, and cold-heartedness of doctors and nurses and others in the healthcare field who are not willilng to listen to the patients and their family caregivers. There is a growing movement in this country for patient-centered care that involves a great deal of input from those who knowthe patient best--the patients themselves when they can speak for themselves, and the patients' families who help care for them. The physical and occupational therapists, pharmacologist, social worker, internist, neurologist, etc. all need to meet together with the patient and family to work out decisions and form a care plan. This is the least that should occur. My anger is powerful, but it is directed in a healthy way. I am in a university graduate level program that will allow me to become a patient advocate or involved in policy research, etc., depending on the directions I choose to go in. My husband did not have Alzheimer's--he had dementia brought on by Lyme Disease. His symptoms and decline were in some ways very similar to Alzheimer's. I did frequently know more than his doctors because I did the research. I, too, travelled all over the country, and I spoke on the phone and emailed researchers. Too many doctors are willing to go along with the status quo rather than think outside the bos, listen--really listen, and look at alternatives, do the research for themselves. If they are, they are frequently harrassed by the establishment. The pharmacologist who advised us when my husband entered hospice was disgusted with the drugs prescribed and the way in which they were administered--for example needles in the thigh which are very painful and particularly disturbing to someone with dementia. There are suppositories that could have been used to get the drugs into his system. There were too numerous abuses committed, one of which was administering my husband drugs I specifically warned against and said I did not want administered. My instructions were ignored and my husband's throat ended up paralyzed. Another was an aid who let my husband fall who said, "He wants to be down on the floor, so I just decided to leave him there." I could tell you lots more. I had wardrobe-sized boxes of research I had done on my husband's disease, on dementia, on movement disorders, on drugs, etc. It was extremely rare that I met a doctor that knew more than what the drug rep told him about a drug. There is definitely a sense by more and more people that our elderly and those with dementia and neurologic deficits (and many others with chronic conditions) are on way too many drugs, many of which are prescribed inappropriately. The FDA does not approve of many drugs that are routinely given to dementia patients, that are instead meant for those with mental illnesses. Dementia is NOT A MENTAL ILLNESS! It is a disease, the root causes of which are not known. As I stated previously, I am grateful to many wonderful people for their kindnesses during my husband's long ordeal. However, they were for the most part, not in the medical or healthcare field. I will not change my mind any time soon that the healthcare system is in dire need of overhaul from the ground up and that the medical profession leaves a lot t be desired when it comes to common sense and common decency.
Barbara, I NEVER met any doctor in any field who knew more (about FrontolTemporal Dementia, let alone the Motor Neuron Variant) than I did. We even went to a "Specialized" FTD Clinic at the World renowned Massachusetts General Hospital! It is sickening, frustrating and down right simply WRONG! The medical system in this country is a joke when it comes to any disease that is not in Vogue! Don't get me wrong, my Dad died of Cancer and I've had many friends who have had brushes with Breast Cancer, but until someone Famous makes it their cause, we are stuck.. Arms around, glad to hear you've moved on and made it your cause. God Bless, Susan *
My dear Barbara, I'm trying to recall the PROFOUND words that came to me earlier today. LOL.
I remember the first doctor who told me that my Foster wa no longer the man I married. I heard the words and thought to myself.."How does he know that? " I wouldn't have spoken those words to another living soul, because I thought I was the only one who thought that. He was right! Only he realized that (aside from me).
Picking up...I wrote that in spite of all we read in newpapers and magazine articles, most written by laymen reporters who put together a story that might grab some readership, that Tumeric, crossword puzzles, coconut oil and stimulus will not cure Alzheimers. There is some question about the overall benefit..in tht it might slow down the progression for a while then the final stage comes on even quicker.
I NEED a lot of support from the Alumni on this site for this next opinion. I realize you are new to our extended sisterhood/brotherhood of caregivers, so you woudl not have read this. It's known by most of us that all Alzheimer's Drugs have big black box warnings on the insert that suggests..nay! WARNS! that this drug is not to be ued for dementia patients, and to do so will cause sudden death/heart attacks etc. That's a big CYA for the pharmaceudical companies. Reason is that the drug did not go through the specific 7-8 year trial specifically for AD, and the researchers knew it would help ..namely aracept, namenda and seroquel to begin with...and most of us swore by these drugs because they were, indeed, effective. We have a widow on this site who is a retired RN and perhaps she can explain that better than I can. Are you angry at a doctor for going against the "INSERT" in the medicine box, I am confident tht they are doing what they know is the right thing. I mentioned tht we went to the infamous MAYO clinic, and to Duke and the Houston Medical Center. His neurologist is known for her research and articles she wrote and her appearances at major medical conferences in the USA and around the world. She prescribed the very same drugs many of our fellow caregivers received from small town primary care physicians. They were simply the ones that worked! The medical community, for the most part, are all on the same page. And, regardless of when they are diagnosed - early or mid term or late, they will all die. It's the cold hard truth. Some doctors admit they suspected Alzheimer's early on, but didn't want to alarm the family and patient, becaue he knew there was no cure..so with his care and watchful eye he keeps the truth to himself. I know that's what one of our doctors did years back. I understand NOW, but might not have back then. There is no cure, they all die..usually 8-10 years after the disease begins. I wouldn't have wanted to know. I have a granddaughter who has had 3 heart transplants. That question must be asked of the family while the donor is still alive, not afterward. I can't begin to know how hard it was to hear those word from your doctor,, bless your heart. But what if, what IF, they found something there that might spark the beginning of an answer for future patients. That's my reaction to the "question" posed to you by the doctor. A small minority opinion, but only because we have seen the miracle of donor hearts from the other side.
And oh my God..I didn't want Foster to die. Not HIM!!! He was so much smarter than me, so much better than me, so much more successful than me, so much more generous than me, and people so admired him for all he had done and been a part of in his lifetime. Why did HE have to die. He had so much to give to this world. But then, it was suggested, ..perhaps he had done/given all he was supposed to have done or given in this Life Journey. He was finished. We don't know for CERTAIN what happens at the end of this journey, Perhaps he is moving on up to a higher calling.
I was sad. More than most people knew. (some of you did!).. I mourned and cried and questioned and doubted. It's been about 10 months now and many of my questions were answered and the wound is healing. It's MY wound, not his. I realized that all of my anger and doubt was not honoring him, and if he was alive he would have adamently insisted that I get up off my bottom and move on. I'm older than you, ..and opportunities are limited to me., but not to you. Just keep looking ahead, not backward. Someone posted on another thread that "I can't keep trying to go back.. because my feet aren't pointed that way!"
You need to find someone who will help you work through this stuff in your head, Barbara. It's like vomit. The longer you keep it inside, the worse you will feel. Get it out. Take your rage out on ME. NancyB*...let me be the villan here, but get it out. Just don't shut out this particular group -whatever you do, because every single one of us have lost our wonderful, loving, life partners. All of us know exactly how you feel. All of us lost our husbands and/or wives to the same cruel disease...and we know exactly what you went through. Scream at us, all you want....say anything you want to say to us... and we'll stand right beside you, no matter what. But add some professional help to the mix. Do this for yourself, for your children and for your husband's memory. He wouldn't want it any other way.
Barbara, thank you for your thoughtful and honest response to my question. My experience has been similar to yours and a large part of my anger is based on that. Add stress from my husband's ex-wife and his children, and it has been hard for me to sort one from the other. I do appreciate your reply and found it very helpful.
Susan L--I completely relate and understand how you had the expertise and how so many supposed experts were not as aware. In my travels and contacts with researchers I did have one or two who were honest enough to tell me that they were very frustrated in their research because the majority of funding was going to HIV, this being a huge moneymaker for a variety of reasons. I also learned of cases where researchers were barred from presenting their findings at medical conferences because their diagnostic test or research results could financially impact a powerful company or government agency's lucrative business. I am sure you lost many hours of sleep in front of the computer trying to find answers and learn as much as you could in order to help make informed choices and keep your loved one going as long as possible. It truly was a labor of love and determination.
mary75--I know how we can continue to question ourselves about the choices we made and could we have done things differently, better, been more patient and understanding, etc. I will always feel, as we all do when someone--particularly a child--is taken from us too early. I will continue to grieve and be angry that my future has been so impacted by his death and that he did not get to have a future. I feel that this is natural and I have a right to feel these things. In a way, it honors his existence. I was lucky in that my husband's family supported me even more than my own, although they lived far away. My wonderful sister-in-law supported my decision to call in hospice, but even with that support, it is still three years later a decision I have trouble with. I cannot imagine the stress you must experience as a result of your spouse's ex-wife and children. That kind of input or interference gets in the way of sorting out your own feelings and moving forward. I hope they can begin to work things out for themselves rather than use you as some kind of source or target. I can only hope that my experiences make me a more tolerant and understanding person and that I can find some way to turn it all into something positive as time goes on. My heart and prayers are with you on this very difficult journey.
I have been very lucky. I have not experienced the kinds of things that Barbara experienced in the state I currently live in. But when we lived in California it took me a year to get from an ob/gyn to an oncologist because the insurance company would not let me go to him and they lied to almost every doctor I saw during that year about what was actually wrong with me and isolated them one from another. In the end it took multiple angry doctors and one hysterical radiologist to get me where I needed to go. I also had doctors blame all kinds of things on my weight that had NOTHING to do with weight including, but not limited to, my cancer scare.
So I can understand why Barbara has been angry because I've had those issues myself in other states and for my own medical problems.
Also, there is no question that I know about as much about this disease as any professional I've come across, and sometimes more than the doctors and nurses I deal with.
But a lot of the things that make Barbara angry are just the way things are. This group of diseases is fatal in almost every case. If we are VERY LUCKY our LOs won't die from the dementia. Doesn't look like my husband is going to be lucky. It looks like that pacemaker is going to keep him coming back for another couple of years and he is going to die because he can't eat, digest, eliminate or breath.
And I am incredibly grateful that when the subject of hospice came up that the nursing supervisor FORCED the hospice nurse to look at all of my husband's records and that they have accepted him.
I'm already dreading Thanksgiving and Christmas. Anyone else?? Yesterday I shopped online, got 75% of my shopping done, all on sale, free shipping, etc. I just wanted it done. I figured it was my best shot at not wasting time, money or gas on something I am not looking forward to. Wish we could just skip to January.
Susan, I have shopped for Christmas on line for the past 4 years and it became so easy for me to do, that I doubt I'll go to the big malls this year...Carrying the big bags, dealing with the crowds, waiting in line,... it's just not worth it. When I order special gifts from the major stores, like Nordstrom's, Neiman's, etc, I take advantage of their gift wraps,, often at a minimal cost, and absolutely love it. Their gift wraps are usually beautiful boxes with pull out bows that I assemble here., so I get to inspect the item before wrapping them up. You are right about the "free shipping", too. It's a win win for me.
I do not understand why gift wrap paper costs close to $5.00 for a pack of 3 skimpy rolls. Plus ribbon, plus tape...and then whoose, it's ripped off and wadded up. I agree Susan, ... use the bags..(and most people keep them to re-use later!!!) Of course, the pretty boxes from some stores do not need to be re-wrapped.
I haven't bought wrapping paper in years! I use the bags, usually just the brown (green) ones and and pretty it up some. But I don't give many gifts anymore - other than cash and gift cards. I guess it's different if you have small children or grandchildren - ours are all grown up and don't need anything!
Our local store gift wraps free of charge. They will then wrap for mailing and do that for you for just the cost of postage. You can buy stuff earlier in the year and save the sales slips-bring it all back when the holiday wrap is in and they will do it all.
I just found velour cover boxes at the Dollar Tree, so cute and a fairly good size. Makes giving a gift card or small gift a bit more interesting. And only $1.oo!!!
As a recent widow I found myself wondering what my place was in the universe. What was my reason for still being here and what was I supposed to do. My daughter gave me my answer. She said "mom-for the first time in your life you are not responsible for anyone else". I have given myself permission to be happy. I cannot change what was but I am still alive and once again enjoying life.
Bluedaze, Being someone who is struggling with what my purpose is now.... if I feel so lost now, what will I feel like when my husband has passed away. As always you have shared such good advice.
Kadee, as time goes by, I realized that we caregivers experienced multiple deaths of our spouse, unlike those who lost their husbands/wives suddenly or after a different kind of illness. I can still remember one particular night when I tried to snuggle up to my husband in bed...he was laying on his side with his back to me. I could smell his essence that I loved so much, and got up really close and put my arms around him... and he flung them off...as if to say, "Who are you and what are you doing." I cried so hard that night, because I was in bed with my Lost Love. He was no longer my husband in the full sense of the word, but he was still there. We experiences these moments for several years, then they are gone!.. and a different kind of grief encompasses us. Totally different. And that grief is just as deep and takes a long time to get through. Only those who have lived through this will understand. Bluedaze's husband didn't even recognize her for years, - but her grief was deep and raw when he died. Because, I think, that's when the "man she married years ago" died. That dear man who wouldn't let me hug him, and the man who didn't know Nora was a different person...in a husband's body that we also cared deeply about.
OK, kids, here we go......I met a man, yes, another one. This one however, is amazing! I sat and talked with him over coffee for 5 1/2 HOURS!! While we were talking, I was thinking. "oh wow, no, this can't be happenning again" Then somewhere along the way I suddenly felt Jim's presence for the 1st time ever. I felt him like a warm blanket flowing over me, I felt like I was in his arms, then I felt so happy and I swear he gave me a kiss on the forehead and floated away. AWESOME. I truely believe Jim found Curt for me. He was always worried about me being alone and wanted me to be taken care of. Curt tells me it is now his mission to pamper me and take care of me for the rest of my life. He is the same age as me 54, so I hope we will have many happy years together. I am walking around like a teenager, all giddy and happy. He is compassionate, caring, thoughtful and so much more. I joked that I had baggage, but it was color co-ordinated! He said, "what's up with this baggage thing?" "We are who we are, because of our life experiences" And he thinks I'm perfect and wonderful, just the way I am!!!!! So for now, my only worry is how to tell Jim's family. They are so behind in their grief because of their denial. I don't want to hurt them. So I think I will write to them and tell them much like what I have said here. I welcome any advice. Meanwhile, please don't mention this on Facebook, as his siblings are on there. Arms around, A very happy Susan
Dear sweet Susan,...I am so happy for you...and a bit envious, I'll admit. All I will say..here,...this one time... is that you've only spent one day with him. Please go slow. The higher you are, the harder the fall...so climb up that beautiful happiness ladder slowly, one step at a time. God bless you.
Thanks Ladies, I really was gushing wasn't I, lol. So far so good. We are getting to know each other and his kids want to meet me. They have been bugging him to start dating. Wow, now there's an about face from the way Jim's kids treated me!!! I am going slow, definately slower than my original email would have indicated. My Mom says we are "smitten". She really likes him :o) My friends down in MA are already inviting us down so that they can put him through their tests! Oh boy, I saw Jim go through it, they are so protective. I'm very lucky to have them and all of my family here. I'll keep you posted. Arms around, Susan*