Living With an Ill Spouse
by Linda Howard
What would it feel like if after 40 years of living with your husband, you woke up and realized the person laying next to you in bed no longer resembled the man you married? Sure, it’s the same body, but almost everything else changed.
We all change over time. It’s normal, to be expected. I was shocked years ago to learn that my husband’s political views had moved to a place where we had little in common. But at least we enjoyed stimulating, well-informed arguments. After a few years of marriage, learning about his hobbies surprised me. I found them totally foreign but over time, they changed from a huge pain to little more than an annoyance. Maybe he wasn’t as involved in raising our child as I hoped he’d be, but at the end of the day he was a great provider. He held a steady job for years.
I was a lucky woman.
Then suddenly life changed. My husband had the first of four strokes 18 years ago. The first and the most recent were the biggest. But the last one, nearly a year ago, was by far the most life-changing. While you wouldn’t know he had a stroke from his physical appearance, he suffers from aphasia — an inability to any longer think big thoughts. (Aphasia is partial or total damage to your ability to speak or understand words as a result of brain trauma, damage, or injury.) Now even he calls himself a dull boy. This man who with his eyes closed could assemble a rocket ship with a screwdriver and a roll of tape could no longer figure out how to take the new shower pole out of the box and install it on the bathroom wall. He couldn’t remember our zip code, telephone number, or his age. I’ve become a he, our grandson a she, and the dogs are lucky. They don’t care what gender he thinks they are.
So begins the grieving process, one without an end – at least not one I can see. Grieving for the man who’s no longer the one I married. Grieving for the loss of plans, hopes, and dreams for our remaining years together. More than anything else, I grieve the loss of an equal partner.
That’s the hardest part, this equal business. I doubt he ever saw this as a fifty-fifty relationship. He arrived at the tail end of the World War II generation. Me? I’m a liberated baby boomer. He always thought of us as a man in charge couple. I humored him. Sound familiar? There’s no humor in it any more. He’s come to terms with his limitations but I’m still grieving. It was one thing to be fifty-fifty or even sixty-forty. It’s a different world to live in a relationship that’s ninety-ten.
Grief is a funny thing, not ha-ha funny but funny in that look at the lady who slipped on a banana peel type of way. Only now, I’m the lady who fell.
I decided to cope with my grief by giving myself permission to laugh, cry, feel cynical, sad, or angry. I allow the full range of emotions to wash over me and they do — every day. It’s taken years to realize that the dream for my life I had as a girl won’t be mine. But the life I’ve I’m leading embodies in many ways parts of that dream. And as long as I keep feeling my feelings, some is good enough for me.
Hello everyone,
i hope i’m doing this right i’m new here i came across this site while searching for ways to cope, i read the stories here and can relate to them.
i’d like to share my story, sorry if its a bit long. my husnand turned 50 this year i am 44 we have 4 boys 25, 21, 18 and 17. my husband has emphysema, pulmonary fibrosis, artritis, diabeties and last year he had one lung removed due to scaring and non canerous growths. he is also on oxygen, he has had breathing problems for many years due to a car crash in his late 20′s but its only been the last 3 years when things got worse and lead to him having his lung removed last year. I also suffer from panic attacks, last year when he came out of hospital he was so ill had lost so much weight and i had to help him shower dress do everything for him which i didn’t mind i wanted to help him. after about 6 months he got some energy back, in this time he had a few hospital stays from geting infections ect. after a while he could shower and dress himself but there are still many things he can not do, last year he also tried to kill himself, me and the boys have done everything we can to try and help him but he just can’t see it, when he started getting energy back and didn’t need me to help with shower ect be become verbally abusive, had me crying on my birthday he would blame me for his unhappiness and call me every name, he has always had a temper and yelled we have been married for 24 years and off and on in that time he would get verbally abusive but once ill it got worse, everything because about him and his illness no one else mattered i did get him help with Doctors and mental health to help him but he would only tell them what he wanted them to hear when he tried to kill himself i begged them to keep him there but they let him come home after a week.
the therapist thought he was fine. over the last few months he has stopped yelling which is good but he just doesn’t care about anything, i put so much of my time into making sure he is alright that my panic attacks have got worse, he use to be my strength and support me and i know he can’t now because he is ill but i don’t understand why he can’t try and be greatful for the family he has, my husband isn’t the man i married i have been waiting years to see just a small side of the man i once new but i realise now thats never going to happen, he wont take care of himself i have to make him vist doctors and take his pills and tell him to put his oxygen on and dress warmer and check his sugar levels the list goes on but he doesn’t want to take care of his health, i am just so tired of putting everything into making sure he is alright when he doesn’t care if he lives or dies, he will let his sugar level get so high and i tell him to take his shots and he just says later, a few days ago i decided i wasn’t going to say anything because i am tired of it anyway he didn’t eat then his sugar levels dropped dangerously low me and my eldest son told him to have something sweet but he wouldn’t, then not long after he nearly fainted he was shaking and sweating so i got him a biscut and some juice whivh did the trick i later found out he didn’t eat but took his insulin… i sometimes think he does these things to get a reaction from us, i know he is really sick but sometimes i feel like he wants attention, like if he is cold it affects his breathing i have told him when he gets out of bed if its cold to dress warm but he walks out with no oxygen and only shorts on and sits there trouble breathing and shivering until i say something… i am just tired of looking after someone that doesn’t care about there health, he has also started smoking again…i would have gladly been there for him nursed him until he died but now i feel i can’t do it anymore because of the way he acts towards me, we have no marriage anymore i’m just his nurse and the person he gets mad at…we have no family or friends support all our family parents siblings turned there backs on us so its just me and my 4 boys trying to cope with this alone… every day i get up and fake how i feel i try to be happy i do the daily chores the who time i feel like i’m dying inside and i’m so tired, i just don’t know how to keep doing this.
thanks for listening
xxx sharon
Hi Sharon. Welcome to the site. I’m sorry you need to be here, but I believe you’re taking some important first steps to making things somewhat better for yourself by reaching out. You will find people here who care about you — and it’s alright to tell your story as many times as you need to. Thee is no judging here, no “telling people to stop feeling sorry for themselves or get over it.” (All the thing people tell us that don’t help.) You have a huge load on your back, one you’ve been carrying alone. It sounds hard, heartbreaking, and getting worse all the time. It also sounds to me like you need to put time and energy into taking care of yourself (and I understand that that is easier said than done). The reality of your situation is extremely complex — there are no easy answers. But I promise you this — there is a way through, one that’s right for you — and you will find it. When I hear about the strength you’ve shown, the things you’ve been through and done alone — including putting on your “happy face” every day, it blows me away. Yes, you will be able to sort this out and find some answers that work fr you. It may take some time and some tears, but there is a workable way of dealing with the situation. How old are your sons? God, you have so many losses going on — all at once: the loss of your relationship with your husband, loss of family structure, loss of anyone (or any hope of anyone) being there for you; loss of being treated properly and appreciated; loss of ability to control your own destiny — and the list goes on and on. I find it amazing when people abandon us when we need them the most, but that’s how loss goes. I don’t know if people think our pain is contagious, or what — but they all head for the hills. They want to hear about happier times, not our pain. Sobeit. It still hurts, but let’s see if we can support you while you figure out what you need and how to take care of yourself and get through the rocky terrain that lies ahead. Have you attended any support groups? I now that may sound like one more exhuasting thing to do, and if it does, and thre aren’t any for people in cicumstances such as yours, is there anyplace you can go for some respite and relief each week — a friend, anyone — just to get away for a few hours and begin to clear your head? What I’d like to see you do is begin journaling about all your feelings — your real feelings (they aren’t bad or wrong) — and also write a list of your goals — how you’d like life to be for yourself, given the circumstances that exist. If you’re unsure about your goals, making “getting clear about your goals” a goal and put in on your list. This won’t be easy, but I know you can do it — and I’m glad you found the site. Melody Beattie
Hi Sharon. Sorry for asking a question you’d already answered. I re-read your email, and you told me the age of your boys. How are they doing with all this? how are they being affected? If you want to talk about that, too — go ahead. We so need to tell our story — we need to hear it, others need to hear it, we need to know we’re being listend to and that our pain counts. We need out balance back before we can more foward at all. Again, you’ve made a good start. I’m very grateful you found this site. Melody
NOTICES TO ALL: It would be great if some of you shared your experience, strength and hope with Sharon. I know many of you have stories to tell. Also, if some of you could help direct her around the site, it would mean a lot to me. Also, I’m receiving the emails sporadically from the site again — so if anyone was ignored — you weren’t (ignored). Your email got “eaten’ by the ethers. TO THE WOMAN FROM JAPAN WHOSE CHILDREN CALLED HER ENERGETIC: I cannot find your original post anywhere — so I hope you find this. If any of you do (find it) or do (now her) could you please guide her to this reponse as I just ran into her post today. THERE IS NOTHING WRONG WITH BEING ENERGETIC. Often, cultures are the culprit for teaching people to be codependent. “Women are to be seen, to be submissive, to be quiet, etc.” BS. (Not PS — BS.) Be who you are. Now, your daughter may mean that you have a lot of passion (or obsession). I don’t know, because I’m not in personal contact with you, nor am I observing you. But I will go out on a limb and say this, with confidence, to you: Please, please continue to be who you are — not who your daughters or culture say you should be. Value yourself, your passion, your enthusiasm for life. One rule in a dysfunctional system is “Don’t rock the boat.” That means, don’t upset the status quo by being different. I am officially giving you permission to rock the boat all you need to. Shake it, stomp in it, rattle it — whatever you need to do to be your authentic self. Okay? Please write with any more questions. And also, if I don’t respolnd in a reasonable amount of time — please send another email. One suggestion is to type your posts in your word processing program, and then copy and paste them into the forum. That way if they get lost, you’ll have a copy already saved. My best, Melody
ADDITIONAL NOTICE TO SITE GUESTS — REGISTERED AND OTHERWISE: Because I have been swindled/embezzled allegedly by my previous assistant out of close to half a million dollars, and because this case was under investigation by the police, I wasn’t allowed to discuss the issues until law enforcement made up its mind about what took place. My former assistant has now officially been charged with ten aggregated felony counts of allegedly swindling me out of over $401,000 — not counting other costs and losses involved. I’ve been up to my cowlick in paperwork for the bank, the police, and my attorney. It’s been crazy busy — which is why I’ve been gone and so quiet about things. Now that she’s been officially charged, I can discuss things about the alleged embezzlement/swindling.. Court will be coming soon, and I will be tripping off to Minnesota (if I’m allowed to attend the arraignment). I was in deep, deep grief over many issues for a long time, but am doing better now. I blogged for the first time (The Hardest Part) last week and hope I will again be blogging regularly before long. My aologies for disappearing, but I couldn’t write and not be myself, and I didn’t want to get in trouble for obstructing justice — plus the police were great and I didn’t want to undermine their work. (88 percent of all assistants will ultiamtely steal, according to the New York Times article I read a while back.) Those are horrible statistics, but it’s the reality of this world. Anyway, it’s good to be back. I’ve missed you all. Melody (And please — if you’re interested — start watching for my blogs again). /mb
ANOTHER NOTICE TO MY READERS: OVER THE PAST FIVE YEARS, THREE OF YOU HAVE SENT TITHE MONEY TO ME. WHILE I APPRECIATE THE GESTURE, MY PRACTICE IS TO RETURN THE MONEY. YOU PAY ME WHEN YOU BUY MY BOOK, OR WHEN YOU CHECK IT OUT OF THE LIBRARY. I’M NOT A GURU, A SPIRITUAL LEADER, AND CERTAINLY NOT A SAINT. BUT THE COMPLIMENT IS SWEET. IF YOU ARE ONE OF THOSE THREE PEOPLE, PLEASE CONTACT ME HERE. JUST SAY, “i’M ONE OF THE TITHERS TO YOU.” i’LL CONTACT YOU PERSONALLY (WE’LL FIGURE OUT A WAY). I NEED TO MAKE AMENDS TO YOU AND REPAY YOU. THE EX-ASSISTANT WHO ALLEGEDLY SWINDLED/EMBEZZLED ME FOR ALL THAT DOUGH ALSO WORKED THE GENEROUS HEARTED PEOPLE WHO SENT IN TITHE MONEY – AND ONE WOMAN WAS REALLY WORKED TO THE TUNE OF ABOUT $4,000. I OWE YOU AN AMENDS — AND EACH OF YOU THREE WILL HAVE YOUR MONEY IMMEDIATELY RETURNED BY ME. SO PLEASE — THIS HAS BUGGED ME FOR A WHILE AND I CAN ONLY NOW DISCUSS IT. PLEASE CONTACT ME, AND GIVE ME A CHANCE TO TAKE CARE OF MYSELF WITH YOU BY MAKING AMENDS AND PAYING YOU BACK THE MONEY YOU GOT “WORKD FOR.” THANKS. MELODY
Dear Melody,
David Shern Ph.D., President and CEO of Mental Health America, recently endorsed my book “The Caregiving Wife’s Handbook: Compassionate Strategies, Stories of Success”.
He said, “Denholm provides psychological insights and practical advice about how to keep mind and body healthy while negotiating some of the most difficult challenges one can face in a marriage. If you are supporting a husband who is terminally ill, this is a must read.”
A. Barry Rand, CEO of AARP endorsed the Handbook this week, saying: “Our AARP members tell us that one of the most difficult challenges they face is caring for a spouse or loved one who has become disabled or terminally ill. In The Caregiving Wife’s Handbook, Dr. Denholm provides the tools and practical advice caregivers need to navigate these rough waters and to emerge at peace with themselves and their loved ones.”
I am a Diplomate of the American Board of Medical Psychotherapists and have been a therapist for thirty-five years. I was the primary caregiver for my husband for 11 ½ years prior to his passing in 2006.
Perhaps more importantly to you, I also attended the First National Conference on Co-Dependency in Scottsdale in 1989 and heard you speak. It was probably the best conference of any kind I ever attended, and had a greater impact on my practice and myself than anything before or since. It was my introduction to co-dependency and the fact that I am it, although “not as much” any more. As I say in my book: “Once we are past the initial anger about our husband’s diagnosis, codependence is the single biggest cause of our deepest discomfort. It is the cause of our irritability, our anger, our excess work, our stress, our critical and guilt-ridden feelings toward ourselves, our fights (or verbal shut down) with our husband over what he should and shouldn’t do, our fights (or verbal shut down) with relatives over his care, the sense that we must do what others expect of us, and much more.” I make several strong references to you and your work.
Because it is such a hot issue in my book, I would be honored and very appreciative if you would consider providing a cover endorsement a review or inclusion in one of your e-publications I am expecting the galleys within about a month, but certainly can either mail or email a pre-galley copy prior to that time.
Sincerely,
Diana B. Denholm, Ph.D., LMHC
Hi Diana. Thanks for taking the time to comment, but right now I just don’t have the time on hand to write any endorsements, etc. My plate is way too overloaded as is dealing with the legal issues at hand. Melody Beattie
Melody,thank you for responding.I love your advice because I do love to read.I have all this time to be home and am able to do this.I am so excited because last night I got Make Miracles in 40 days.This morning I started on my gratitude list and could not believe how many issues from my childhood kept coming to mind I had not dwelt with.I had so much to write.I will be reading from the site you have about it.I have started reading your daily meditations everyday.I am so thankful again to find this site.God is so amazing how he helps us through others like you.It’s wonderful after being a fan of yours for so many years finding your website.Thank you for your help and really caring for others like you do.God bless you!
Happy to be of service. Keeps me alive and kicking. Did you go through all the warm up activities — or did you peek? It sounds like you have good self-awareness. This exercise is so far beyhond a gratitude list, yet if you explain it, it’s easy to categorize it that way. It’s an awareeness and surrender activity — it’s a learning to surrender to the NOW activity. I think you’ll like the reesults. My biggest problem is still being so comfortable feeling miserable that I don’t notice what I’m feeling ad that I can have it turned around in record time, if I choose
My husband has dementia.We were married when I was 30 and he was 53,we have a 24 year old son.I am now 55 and he is 78.He has had demetia 10 years and I am his caregiver.He went into the hospital for surgery and never came back the same.Our life has changed so much and I grieved along time.We were blessed to be able to travel alot before this happened.There are times I have felt like never leaving the house except to get groceries.Caregivers suffer from a deeper depression.But I do go to Church and my Church family is wonderful.This helps me alot.I know in alot of ways I have grown through this.I know through this for awhile I was so overwhelmedI was doing too much for my son financially.This is better now and my son is more responsible.It was lilike I had given up on life.I still have some bad days.Like you told someone else Melody sometimes I have to take it an hour at a time.I try not to worry about the future.I have been so inspired by your books Melody.I found this website today because I am reading Stop Being Mean to Yourself and thought I would look you up.The first book read of yours I read was about you dealing with the grief of your son.My sister gave me a copy of it when our brother died of aids in 1996.It was a big comfort to me.I have several of your books.So thanful for this website.Thank you for having it.
I’m sorry your family is going through this. The sad fact is, they’re keeping most of us alive longer and by the time we hit 83, one out of two people will have some form of severe dementia. It’s pandemic. It’s exhausting. Lonely. And more. I didn’t have to deal with it with a husband, but I did take care of my mom her last years. It ended up being a spiritual gift to me, but it was an enormous amount of sacrifice and work — but tat’s when I learned that those things — when I choose to give them willingly and not out of guilt and obligatioin — are wht create love. Stay hooked in to the site. Read all you can. And squeeze in mini-moments to take care of yourself. I started playing online scrabble. It only cost me $12.00 a year.
Sounds like you’re going through hell right now. Sometimes, Life can feel relentless in its pounding on us, and like there’s no purpose, or path. Intellectually, I know there is but emotionally it doesn’t feel that way. It sounds like you’re reaching out to take care of yourself, and that’s a great start. Once we start looking for support, we’ll see it’s been waiting for us to reach out and grab it by the hand. Keep taking care of yourself. MB
My husband and I will be married 15 years next month. Two and a half years ago, he was in a rollover accident that disabled him permanently. He had to quit his job of over 30 years. He has pemanent impairment to both arms and legs and his neck. He had multiple surgeries to try to fix the damages to his shoulders, knees, elbow and neck. Bottom line is that he cannot do any of the things that he had planned in his retirement. He has a 5 pound weight limitation for his arms. The accident also brought back the PTSD from his Vietnam days that was never treated. So now, I have a wonderful man that is on pain pills daily, antidepressants, antianxiety meds, etc, etc. He suffers from wild mood swings, he falls asleep at really bad times, he focuses so much on the things that he can’t do that he will try to do it because “that’s what real men do”. I find myself rushing around to save him from himself. Then there are the times where I am exhausted and he is needy. If I leave the room to take a nap, he will turn the tv up louder or do something to make me come back and be with him because he does not like to be in a room by himself. He talks about buying an RV so we can go camping, he wants to buy land so he can go hunting, he wants to buy, buy, buy. I control the money and when I tell him to stop buying he stops. But I get really fed up of listening to him want to buy this and buy that. Sometimes his depression gets so bad he will tell me that he wishes he would have died in the accident. I have almost come to the point where I am fairly certain that he will do something to end his life and I will have to be prepared for this. He always tells me that he won’t be a “burden” to me. He is in constant pain (despite the pain meds) and physically, his condition is only getting worse. Mentally, some days are better than others. He is a recovering alcoholic (21 years sober) but no longer attends AA meetings. And if that was not enough, my 25 year old daughter is in a rehab now for her first time. She has had 3 DUI’s (all drugs) in 6 years. My husband’s 32 year old son is in another state living on the streets because of his drug habit. I am reading your book that I downloaded on my ebook device. That was my Christmas present to myself. I see myself on every page of Codependent No More. It is just a bit freaky. But I have a sense of humor. I can handle it. You present a lot of great ideas that are actually doable. Thank you for being there for us.
You, my dear, are an extremely smart woman. (I’m not saying that because you like my book; I’m saying that because you’re focusing on what you can change, which is taking care of yourself). Hazelden has taken an unofficial stand on recovering people taking opiates for long-term pain. It’s an issue that must be faced as people are living such long lives now, and many will be living with intractable pain (pain that has no cure or end). The pain is not in people’s heads. Their bodies really hurt. The problem is the lack of quality pain management doctors and programs. I don’t know where you live; I can give you a referral for your husband, if he’s interested. If he’s presenting all these symptoms on his medication (I am not saying this as a doctor but as a friend) — he is on the wrong meds. A recovering addict can take opiates daily. The correct medication in the right amount will not make them high (not much longer than one or two days). It will take away the unbearable pain and restore them to quality of life, ability to work, and make them bearable to live with too. They will be normal, functioning human beings. He’s not on the right meds. It sounds like he does need opiates for that much pain — but there is a vast difference in the various opiates. They have also discovered that a portion of the population (usually people that end up in AA) have been born without a gene in their liver that metabolizes medication. That means they keep taking more and more of something that doesn’t work, until they hurt themselves. Most doctors are not educated in pain management. They’re like the counselor on Southpark who says “Drugs are bad.” There is a positive reason opiates were discovered; they alleviate pain and suffering and we no longer have to tie people down when we amputate their arms or legs. The lack of good pain management clinics, ones willing to work with opiates and people in recovery, ones who know how to experiment until they find the right meds and the right dose (and keep tabs on whether the person is living life — which is the purpose of pain management) is an horrendous problem we’re facing. The general population is uneducated about drugs, and managing pain correctly but the doctors — the majority of them — are just as bad. It generally takes a combination of more than one opiate, along withother drugs to prevent narcolepsy (a person on proper p.m. should be able to safely drive a car, get pulled over, and with no problem pass a sobriety test). In other words, pain management should work, and work well, for people living in intractable pain. You’re taking great steps by taking care of yourself. If you want to read or learn more about proper pain management, what spouses can do, or want a referral, please contact me at my private email: MelodyLBeattie@msn.com. I’ll do what I can to help. If nothing else, I can refer you to the best web site that exists that contains a free manual for patients and spouses on the subject — everything from diet, to how constant pain destroys the endocrine system, and what can be done to help. It is a myth that people on narcotics for a lifetime constantly need more. Once they’re “titrated” upwards to a dose and the meds that work, most of them stay at the same doseage or even eventually begin to go down, or decrease the amount. Dependency, healthy, is what we have on air, water, food. you can be dependent and not be addicted, even if you’re an addict. Not treating pain properly can lead to suicide and death, or a relapse into drinking for alcoholics. It’s a tough situation, but good solutions do exist. Let me know if I can be of more help and hurray for you for focusing on yourself! If that’s all you do, and don’t want to become involved with pain management, or your husband doesn’t want to find a good program that actually works, then you may not want to invest too much time in his roblem but instead, continue to take care of yourself. But fifteen years is a long time. I’ve seen and personally know of married couples where one is on pain management (narcotics), and they have loving, happy marriages that actually work. Whichever path you take, fear not. You are being led. Melody P.S. — If there are others out there who want more info on pain management and aren’t just looking for a justified slip, let me know and I’ll post more on this subject. I’ve got a woman waiting for me to interview her but I haven’t had time. I’ve been planning to deal with this subject but now may be the time. People will have to let me know if they want to learn more about it though, first, as I don’t want to talk to the air and I don’t need a group of fundamentalists shaking their finger saying, “drugs…are….bad.” A thing is not good or bad; it is the use or abuse of it that makes it so.
Hi Leslie,
I hope you’ll get an email to let you know I replied even though you posted so long ago. My husband has chronic pain, mild TBI and bipolar. He just got out of rehab to deal with the addiction to pain and anxiety meds. One aspect of the program was EMDR. If you’re not familiar with it here’s a web site with information http://www.emdr-therapy.com/emdr.html In his case the EMDR therapy used was a series of CDs by Mark Grant. They are available for sale at Amazon.com. The following is a link for one of them. http://www.amazon.com/Change-Your-Brain-Pain-CD/dp/B002L6HBOO/ref=sr_1_3?ie=UTF8&qid=1309043065&sr=8-3 My husband used to think it was a lot of hocus pocus to use this new agey stuff. He’s a believer now. They were extremely effective for dealing with physical pain. He was so excited when he called one day to tell me he had no pain for the first time in months. He uses the CD every day or as much as he feels he needs it. The other CD, Calm and Confident helps with relaxation. He uses that to relieve anxiety and feel more alive. I bought them before he came home and use them myself. Along with acupuncture as a treatment he’s no longer on pain killers. I hope this helps.
Hi. Thanks for responding for me. Had to have an emergency surgery — today’s my first day up and about. I’ll try to get caught up here, but it may take a couple days. Melody P.S. — I have a section about EMDR in The Grief Club. I don’t know a lot about referring to it, but I can vouch for it as an effective therapy. It worked almost instantly for me regarding PTSD.
I have been married for 17 years to a man I totally love. I just typed out this long comment and the screen came back and erased it. Anyways he has had a drastic change to his health 3 years ago diagnosed with type 1 diabetes and this has left him disabled unable to work and as a result very frustrated and depressed about the whole situation. I am glad we were able to get him the care he needed before he died, which almost happened. He just has all of these things wrong with him legally blind and nerve damage just to name a few things. I am unemployed and cant find work. We are in really bad shape financially and emotionally. I am praying and hoping for a miracle right now. Thanks for any advice and or comforting words you can gove me at this point.
I’m sorry about all you and your husband went through. I never understood how important quality of life and ability to function were until I lost them. I don’t agree that losses come in threes — they come in huge chunks and one leads to another as we go through mostly undesired transitions and changes. I can tell you this: every single thing comes to pass and there is a Way through the hours that loom ahead. Do your best to stay in each moment. Most “helping” programs have been cut off with funding, but try calling 211 in the state where you live. It’s funded by the United Way and has resources for all sorts of problems — but resources are dwindling. There was a time when I got dozens of free books from my publisher when a new one came out, but that time is over. However (and it sounds so horribly self-serving to talk about reading one of my books) — maybe you could go to the library and check out “Make Miracles in 40 Days.” It’s not a gimmick; I’m not selling happiness or the power of visualization and belief. It’s a technique Life and my HP taught me when I was in a situation similar to you. It works. And books at the library are free. I tested it on a group of 40 people to make certain it didn’t work only for me. It works for people who work it — it takes ten minutes a day and rigorous honesty. My friend (who despises self-help books) loves it. It’s the only book in that genre he’s ever spoken good of. I’m saying this only because in my heart I believe that while the pain from losing your husband will probably be with you forever, in 40 days or less you could truly see tangible changes and your life becoming significantly better — and feel like you can handle things, too. Remember to be easy with yourself though; you’re raw and in deep grief. It’s not a comfortable place to be and the best I can give you is the hardest thing I had to learn: and that was to get comfortable feeling uncomfortable with grief. I’ll hold you in my thoughts and prayers as I’m certain others will do on this site. Melody Beattie
Thanks and I will get the book and hopefully I can pass some of the ideas along to him as well at this point we are willing to try just about anything. My faith had been on real shaky ground and I am trying to believe that God will get us through the bad stuff and hopefully give us a brighter future. I am sad that I have to see him not be able to do alot of the things he loves such as riding his motorcycle, golfing and reading just to name a few. I miss doing those things with him as well. I know we all have to go through things that are unpleasant to really appreciate the good however that does little to comfort you when you are knee deep in the bad times and do not see a light at the end of the tunnel. We are determined to get through all of this but I have to tell you seeing him go from a very happy go lucky positive person to a very depressed and stressed out person is breaking my heart. I feel his pain because I would hate it if I couldnt see well enough to do much and he feels guilty he cant go out and make an income for us. I keep telling him I do not hold him responsible and that maybe God will heal him. Keep us in your prayers. Thanks again.
Mary
Thanks Melody and I will get the book I am signed in as a member now but my reply to your original reply got deleted somehow. Anyway I just want you to keep my husband and myself in your prayers, he is not the positive happy go lucky guy I married because of all the health issues and I just pray with all my heart that God will grant us the grace and mercy to heal him to some extent, even if its only his eyes so he can do the things he loves again. He really is a good man and deserves to have God bless him.
I wasn’t sure from your previous comment if your husband was still living or not. Is he in physical pain? Pain management is a “hot” topic and one I have strong and perhaps controversial feelings on, as I believe we each have the right (and the States agree) to have quality of life and ability to function. Without those two things, we don’t have a life. I wouldn’t mind starting a Forum on this subject although I’m certain it will attract people of different views. Many people thing “drugs are bad.” Many people think using drugs equals “being addicted” — even if the factors of addiction aren’t present — loss of control and ability to function, and a decrease in quality of life. There’s a difference between healthy dependency on any “thing” or person — and addiction. Most people do not understand that difference. When I get caught up (yeah, right, Somewhere Over The Rainbow) it’s another subject I want to “attack.” Honestly, it scares me and I think many people will be surprised by my views. Things like drugs and money aren’t in themselves bad; it’s what we do (or don’t do with them) that make them a negative or positive influence in our lives. Another thing I’ve learned about Grace is that it’s like breathing — we can never get ahead of ourselves. We only get the Grace to get through the moment we’re in right now. That much, I promise, will always be available even though you may feel scared and uncomfortable. Blessings (many and much) Melody. Oh, another theory I’ve formed is that when we hit our fifties (usually late fifties), we become like a car with a lot of miles on it. We then need to decide — are we going to get the broken parts fixed or replaced, or will we “junk” the car. An unconditional commitment to life though, is something that each of us need to make. Again, my best. Melody Beattie
Yes he is alive and the pain from the nerve damage although not constant is not pleasant but he does what he has to to manage that. He isnt on any pain meds just insullin and a low dose med to keep his kidneys healthy. His eyes are the main problem, we are going to try and find a different doctor for that this year and hopefully they may be able to do something to improve his sight to some degree. I went to the library for the book you suggested and there is a waiting list I had to get on which means it could be 3 months before I get it. Looks like I am not the only one looking for a miracle these days. Though I dont know you and honestly never heard of you till my therapist told me to pull up your website, you seem to be a very caring and compassionate person. I am sure that comes from a lot of pain in your own life. As always thanks so much and prayers are appreciated. We are very close to being financially bankrupt and losing our home would be to say the least catastrophic. Jobs these days are pretty illusive, I am looking like crazy. So you see everything in our life right now is scary and not very comfortable.
This is actually from me, so I hope it goes up. Anyway, it’s to Mary re your resonse to me. I’m sorry to hear about the library being so behind; that’s inexcuseable. I would strongly suggest complaining. One of the hardest things for me to “get” over the years is that the squeaky wheel does get the grease — it takes a lot of energy and time to squeak that much though. (I’m not making light of what you’re going through, please know that.) It was a hard lesson for me to learn, and to teach my assistant, too. First, I suggest calling 211. There are many programs that supposedly are helping people to not lose their homes, especially people who have ARMS (adjustable rate mortgages). In your circumstance, where your husband is ill, it would seem to me that your household would be a priority case. Don’t stop with one call though. Keep calling, keep asking questions — actively pursue getting the help you need until you can decide, or are led, into a long term plan. Until then, you’re going to have to take it a day at a time. it seems to me that your husb and qualifies for disability. I don’t know how uch he’s paid into Social Security, but he should be able to be declared disabled on this first visit to the State physician. I would though, take with him, someone from a trustworthy organization who advocates for Social Security rights. There are MANY of those — but you need to be careful you don’t get taken advantage of by the people trying to help you. I’ll have a website up as soon as possible re the Miracle Book, meanwhile I’d call the library and complain and tell them they need to buy some more copies of that book — or (if you have a facebook page0 go on there and ask if anyone has read their copy and could loan it to you. ASK — for what you need. Outloud. Loudly. So people can hear you. But be diplomatic, too. It’s a simple process, but it really did take an entire book for people to understand. Send an email to Simon and Schuster, too. Often, publishers have “seconds” — copies of books that are wrecked, that they can’t sell because one page is torn, etc. Call and ask if they have a program like that. Tell them I told you to and will back that up. (I’m trying to think what I would do if I were in your shoes, and that is what I’ve done — and am learning to do better). I would really make getting your husband labeled disabled a priority, as you would certainly qualify for some help then. You won’t be rich, but you’d be able to eat and kee a roof over your head. If hubby isn’t on the right meds and that’s making him act crazy, that would qualify him for disability if he can’t work. Call 211. Don’t let them hang up until you have a lot of resources to call. If those don’t work, go back and get more. I’ not kidding about this. Lately, even reliable businesses are not paying their bills and collecting has become difficult when people legitimately owe me. (People have no problem calling and demanding their money though, when they have some coming — whether it’s a lot or a little.) Also, hand-write your specific goals — none that interfere with another person’s free will, and don’t monitor them daily. Give them to God, as you understand God, and let go. Then daily, do as you are guided to do. It does sound like you qualify for full disability for your husband. Start there, and please keep me up to date on how things are going. Now is not the time to be timid. I recall after I married “the man of my dreams” and it turned into a nightmare and we were walking up the steps to the welfare dept. as we didn’t have food, money, and soon wouldn’t have a roof over our heads without help, I was a chemical dependency counselor — he was one of the leading chemical dependency counselors in the state. He was great at helping others, but was unable to help himself. (Before his death, he went to treatment 39 times). It truly is a “by the Grace of God” thing that gets us well, and that gets us help. I don’t have all your answers Mary, in fact, I barely have my own answers. But if you can take time to get quiet for a few moments each day, you can hear what you’re meant to do. I did fight with the publisher (Simon and Schuster) to bring this book out paperback, not hardcover. They wouldn’t do that — but in the end they did decide to knock ten dollars off the suggested retail price, which made me extremely happy. Downloadable copies are even cheaper. Maybe you can find someone, like i said, who’s read the book and would be willing to share it — as that formula is tried, tested, and proven to work — if we work it correctly.
Sorry for posting here — hope you find it. I understand what you’re going through is painful and drains your energy, but I’m really encouraging you to take back your power. You sound like a strong woman — and figure out what the next good step is to take, the next thing you should dol There is a way through this. I promise.
Melody Beattie
Reading Linda’s story made my cry. For her and for myself. I married a man 3 1/2 years ago and the day we were married he changed. I realized he was controlling and sick. 6 months later he was diagnosed with bipolar. He was abused as a boy and has experienced the loss of his abusive mother, his brother’s death by suicide and many other deaths in the past 3 years. He can’t love me or my two boys although I believe he wants to. He is abusive at times. We never had it good. We never had a honeymoon b/c he got crazy on our one night stay in a neighboring town and we never had a honeymoon period because of the diagnosis and loss. I didn’t know I was codependent, but I do now and feeling the pain hurts a lot. I know our marriage is over. I have emotionally detached and will physically attach when I can get into the rental property I have found (could be a few months.) I am trying to give up my addictions to pride, food and codependency. I hurt so much. I am so lonely. The next year is going to be so painful. I love my kids so much and they have had it so hard in their little short lives-that makes me sad too. I married him and my first husband out of codependency and stayed with them both too long out of codependency. I have started to grieve the loss of my first marriage just recently. There is just so much pain. I want to turn to my husband, I want him to listen and care. I want him to notice me. He is sick. I have to grieve-it just gets overwhelming. Feeling hurts so much.
That’s a lot of pain and you’re right — feeling it hurts a lot. Overwhelming is the word I used to describe my “parcel of emotions.” Because it was (overwhelming). You have so much going on. Please, please be gentle with yourself. Know that if you eat too much, you’re trying to save your life. You’ll lose the weight later. Gaining weight is a normal part of grief. 1) our metabolism slows down and 2) food can be a comfort thing. You’re fighting for your life and sanity with all this going on around you. Count the losses in your post: there are a lot. Even the loss of the family you wanted for your children counts as a loss, and a big one too. It took me a while to learn how to surrender to the emotions, to sort them out, feel the energy of each one, breathe into it, and then let it go to that “great dumping ground wherever feelings go.” Then there would be another emotion. And another. When I resisted, it made it hurt worse. When I relaxed into myself — me — what I felt — it still hurt but not quite as much. Maybe a teeny bit less. But it helped. You will become an expert (if you’re anything like me, you don’t want to). But you’ll become fluent at dealing with these feelings, distracting yourself from them when you need a break or a rest, and then breathing into your emotions again to stay in balance and clear. This isn’t wasted time. It isn’t wasted life. What’s going on with you now is extremely important. I don’t have the Book of Life. I don’t know the Master Plan. But I can guarantee you that this is not a waste of your time. Whatever is taking place around and within you is very important. If you can, try not to look too far ahead. Sometimes an hour was all I could take. Even a day at a time was way too much. Slowly I began to learn the art of staying present for each moment. That altered time and space. I began living a different way, a way that gradually became a new way of life. I’m glad you’re here. I’m not glad you need to be here. I’m sorry for all you’ve lost. If I had a magic wand, I’d wave it over each person that came here and take away their pain. But I don’t and I can’t. All I can do is say: I really care and when you’re here, you’re not alone. Love, Melody Beattie
And when you’re not here, you’re not alone either even though it can feel that way. Forces seen and unseen are helping us through what we’re going through. We are and are becoming One with Love. A million thoughts race through my mind as I post, remembering the pain, wanting to make it better for all of you, knowing my limitations, but mostly all the questions I have about why life is the way it is sometimes — which boils down at the end of the day to being another way of saying, “Ouch, this really, really hurts.”
You know it is hard to leave my ill spouse-beacuse he is ill and I am codedendent. But it is so sick living here with this bipolar. Sometimes I feel like I don’t love myself enough to actually make the move-but I do love my children enough to make the move. So that just has to do it at times-I want to love myself like that, and I get glimpes of it-but I can rest in that true love I have for my boys and use it to take my next step. It is scary tho-and it hurts.
You’re facing one of the hardest calls a person can make. It was my children — and Something Else that gave me the strength to leave a marriage that I wanted to work out with all my heart and soul — for their sake and mine. I worried and wondered for years — should I leave him, would I? One day, it happened. It became time. I can’t say I didn’t second guess myself, but it was for moments. I’d ask myself, each day — do I want to get back with him, or move forward alone, with my children? The answer would be “move forward without my husband.” As long as I stayed in each day, I did great. Then, after about six months, I realized I was doing it — raising the family — and doing it well. While there will always be sadness about losing the natural family, the sense of taking care of myself and the children, and being taken care of by a Loving Power — I found it awesome, empowering, and actually joyful. Melody
Going from being a partner in a relationship to a caregiver creates a huge shift. Are any of you experiencing this? Linda shares what helps her in her story. What helps you? My only experience with this was when I found myself taking care of my mother, someone I always wanted to love and take care of me. That’s an entirely different thing. In my marriage to my children’s father, I didn’t have good times to lose; all I lost was my dreams and that process began on our honeymoon. If any of you are struggling with living with an ill spouse, I invite you to come inside the site. Start a group or a forum. Reach out to and support each other. What you give will come back to you.