Wheelerswife

My Rosie girl. Absolute sweetness! Right now, she is talking to me because she is hungry. Maureen

I get the "You are strong" comments a lot. In many ways, we have to be resilient, and I understand that people can't fathom facing some of what I've faced. They just haven't yet had the experience to know what we go through or how we manage to get through each day. We all have stories of how we just did it. Sometimes I wish people really knew how weak we feel when we look strong, but then, if they did and they were able to be present to all of that weakness, I'd have trouble just functioning day-to-day. Perhaps it is a no-win situation. Maureen

@sj85, I just wanted to welcome you formally to this board. I'm glad you came out of the shadows to join us. It must be difficult to have lost your love, your way of life, your access to your daughter....all at the same time that you have been denied of your place as the husband to your wife. So much of what you describe is normal for a grieving spouse, but you seem to have more isolation than some of us have, and that just makes it harder. Sometimes it is all we can do to dive into a job (or for me, school) and get through each day by whatever distraction comes our way. It wasn't supposed to be this way. It wasn't. Still, I think your move to join us is a positive thing. Hugs, Maureen

I was an extreme caregiver for 18 years. My first husband was disabled from birth with a genetic and progressive neuromuscular disease that made his skeletal muscles extremely weak. The nerve cells that are affected in his disease are the same as those affected by polio and ALS. I met him when I was working as a physical therapist and he was assigned to me for a new wheelchair prescription. He already knew what he wanted and needed and so did his wheelchair vendor, so in many respects I was just the piece that was required by the insurance company to verify what he needed. When he was getting this chair, he was also in the process of getting a van he could finally drive himself with high tech controls. He drove with his fingers on small levers for the gas and brake and with a zero-effort steering wheel that had a diameter of about 6 inches. I ran into him a couple of years later, in January of 1991, in a shopping mall. He immediately recognized me, as often my former patients would. I stopped and had a polite conversation, asking him about his wheelchair and his van. I had developed a specialization is assistive technology and was interested in high tech equipment for people with physical disabilities, particularly as they interfaced with wheelchairs I was prescribing. He offered to show me his van the next time he came to clinic at the hospital where I worked. I gave him my business card so he could call me when he was going to attend clinic. He called me the next morning. I sat at my desk trying to figure out how to handle the situation...he wanted to get together and show me his van. I squirmed, trying to figure out how I was going to get out of this one politely. I ended up agreeing to meet him...and then he wanted to go to dinner, too. I decided I just had to get it over with. So 5 nights later, I met him for a drive and dinner. That turned into our first date. The next night was our second date. We had 14 days in a row of dating before I finally insisted I needed a break. I was falling in love with this man, who I knew was destined to die young...and there were no guarantees that he would live beyond tomorrow. Long story short, we were engaged in June of 1991, bought a house and had it modified a few months later and we were married in June of 1992. Barry always needed complete assistance to get up, showered and dressed in the morning. In our early years, he could do things like brush his teeth and comb his hair with the right set-up. From the beginning, in order to try to maintain some semblance of balance in our marriage, we had a personal assistant who lived in a basement apartment in our house who got him up every day. I took care of getting him on the toilet at night and putting him to bed, but that didn't take as much time or effort and it preserved our nighttime privacy. Barry was too weak to turn himself in bed, so every night for 18 years, I woke up and turned him every couple of hours when he would wake up in pain. By day, Barry was pretty independent in what he needed to do from his wheelchair and he could remain alone or get out of our house using power door openers. We would leave him simple finger foods that he could feed himself. He worked via computer and speaker phone part-time after being laid off from full-time work two days before our wedding. Life was pretty good for a long time, although lifting him and waking up to turn him at night were challenging sometimes. He was prone to respiratory infections and had no effective cough for years and easily could choke. When he was sick, I was on duty 24 hours a day, trying to keep his chest clear with postural drainage. Somehow, I managed to keep this 90 pound weak man out of hospitals. His pulmonologist would make house calls when he was sick and knew that when I called him, it was pretty serious. In early 2008, he came down with bronchitis and I managed him at home, but he didn't bounce back like he had previously. I knew his risks were going up. We decided to visit a neuromuscular disease specialist in New Jersey who specialized in respiratory management of people like Barry. Barry never wanted to be trached or be dependent on skilled care or be institutionalized for high level health management. This doctor specialized in non-invasive ventilation for people with severe muscle weakness. His assessment was that Barry did not yet need a ventilator, but we at least had this resource in our tool bag now. Two weeks after that appointment, Barry crashed on me at home because of a rapidly progressing acute bronchitis. I had to call 911 and I just made them scoop and run him to the hospital because I knew they wouldn't be able to intubate him in the field. He developed a severe stress cardiomyopathy (Takotsubo cardiomyopathy or broken heart syndrome) from the adrenaline rush from a plugged lung and respiratory distress. He was extremely critically ill and not expected to survive. A couple days later, they reduced his sedation and I made him wake up and listen to me. He could only communicate by looking upward with his eyes. I explained what had happened to him and what he was going to have to do if he had a chance of surviving, which meant being intubated for at least a couple weeks and then hopefully extubating to a non-invasive ventilator. I asked him if he wanted to live and he adamantly said, "YES!" I vowed to fight for him, and I did. It took some time, but his heart recovered to it's normal function and antibiotics and intensive care support cleared his bronchitis. The doctors, nurses and respiratory therapists were completely unfamiliar with non-invasive ventilation and kept pressuring me to trach him. I refused. They wouldn't talk to the doctor in New Jersey. They made a couple of unsuccessful attempts to extubate him to prove to me that I was wrong. I finally put my foot down and insisted that they airlift him to New Jersey. It took 10 more hellish days, but it finally happened. After the helicopter took off, I drove there myself. After one false start and some cardiac stunts, they successfully extubated him to a non-invasive ventilator. He breathed completely on his own the second day for about 6 hours. On the 6th day after extubation, I drove him home, along with enough medical equipment to fill an ICU. It had been a long 6 weeks in the ICU and I basically lived there with him. I spent the next few months with him 24/7, working to get him strong enough to leave with someone else while I went back to work. At first, it took me 4 hours a day to get enough food and liquid into a 90 pound man to keep him from losing weight. We enjoyed the opportunity to roll back into the original ICU 10 days after he got home and the ICU team was shocked to see him breathing on his own, talking and not trached. He never regained his previous strength and was essentially functioning like a 90 pound infant that had bowel, bladder and sexual function. He needed 24/7 care the rest of his life and never felt safe if left alone in a room. My bathroom door never closed during that time. His last 16 months were very precious to us. We had incredible intimacy on many levels. He developed pneumonia a year after his bronchitis but we managed to get him through it in the ICU without intubation, but with a lot of respiratory therapy and my consistent demands for him to get the kind of treatment he needed. (I got so tired of hearing that it was above what was standard! He wasn't a "standard" patient!) Three months after that hospitalization, he developed a simple cold, then high fevers and I knew I needed to get him back to the hospital. I had to insist that they admit him and admit him to a step-down ICU. A few hours later, he redeveloped high fevers and cardiac arrhythmias (I knew it would happen) and a short time later, he was again critical. He needed intubation to survive, and he declined. He had had enough and I believe he knew that IF he survived, he probably would have lost his ability to speak and swallow, neither of which were acceptable. He was tired of suffering. I remember the last time I asked for meds that I knew might put him to sleep for the last time. He was confused at that point and uncomfortable and I knew he needed the relief. He died on 9/22/09 after about 7 or 8 hours in a coma. I stayed strong for him until the end. His biggest fear wasn't dying, but of having a bad death. Fortunately, I was able to fulfill a promise to stay with him and advocate for his comfort in the end. If you have read this whole post, thank you. I don't tell this story much anymore. I needed to do it today.

I reached Beyond Active Grieving fairly early out after my first husband died. I met my polarbear when I was 6 months out, moved to be with him at one year out and married him at 18 months out. Life changed completely and had a different trajectory. John and I grieved and fell in love at the same time. I know that doesn't work for most people, but it worked for us. Even in our incredible happiness, there was always sadness underneath. That was okay. I don't know how we ever lose all of the sadness from losing a spouse. I am 14 months out today from the death of my second husband. I am still actively grieving, although I think there might be some little light out there ahead of me. I'm not dating, but the idea of meeting someone and finding another great love resides in the back of my head. I don't know how that will happen, but I know I'm not meant to live my life alone. I make a much better partner. I have to keep hope that I will find happiness again, and that I will come to a place where I can remember John without the level of sadness that is with me now. I know that finding John changed my perspective rather quickly. It is possible that I could have that kind of experience again. How likely? I don't know. But I want to remain hopeful.

Thank you, Ginger. YOU were at my first bago on November 21, 2009. I just went back to that bago thread to check the date, which was 1 day before my 2 month anniversary. We've seen each other at bagos ever since, and I'm grateful that we got to see each other on New Year's Day this year. I've met widows from coast to coast in the US, Saskatchewan, Canada and even when I visited Sydney, Australia. It is good to see that people are starting to connect more in Europe and some day, I hope to bago there, too! Thank you for posting this history! Maureen

I know that everyone pays attention to Division I basketball, but here in Kansas, and in my very own university, we have top-level Division II women's basketball. Being from Connecticut previously, where women's basketball is highly respected, it is exciting for me to have our university hosting the women's Central Regional Tournament for Division II this weekend. Fort Hays State University (I know...nobody has ever heard of it!) is a #1 seed in the Division II tournament. We also have 2 other smaller state universities from Kansas in the tournament as well. Of course, I will be rooting for UCONN in Division I ball....and hoping that the Volunteers from Tennessee don't do that well. (Where is TimidandShy these days?) Maureen

Ummm...Jezzy? When have you had time to grocery shop? Maureen

Okay, my $0.02. When I joined the board in October of 2009, there was a presence of older and wiser wids that had endured the angst and gained some greater insight into life beyond the initial couple years of widowhood. That was an amazing asset to the board that frankly has been missing for the last - oh, couple of years, at least. Perhaps it is because social media allows people to connect here and leave the board for a different pasture or perhaps it is because people's lives change and they don't "need" this board anymore. The reality is...the BOARD needs those wids to hang around and for them to be willing to impart their wisdom in well-thought out posts about a variety of topics that would be of general interest and HOPE to newer widows. So that means we need fleur and Ginger and RobFTC and SimiRed and kmouse and mokie and others, too, to remain a part of this new board. Pretty please? Maureen

I went to my gynecologist about 3 weeks after my first husband died. My husband had a significant disability and had been critically sick the year before. When I told her he had died a few weeks earlier, she said to me, "You will be better off without him." (WTF???????) My own father, 3 months after my first husband died: "You knew he was going to die. Why are you so sad?" I never went back to that gynecologist, and I see my father about once a year now.

Go ahead and post away! We all went through newbie status before you and asked the same questions and ranted about the same frustrations. We get it! I know there are newer widows out there and I hope they find this place and can feel what we all felt when we got here...someone else understands! We don't have to do it alone. Ask about anything you want. It is why this place exists. Maureen

My friends, I've been waiting for this day with you...well, not EXACTLY with you....but I'm really happy to know that you are finally together full time. Thanks to both of you for being an important part of my life. Oh...Rosie says hello! Maureen

Hugs, hachi! Maureen

I'm not sure even where to start. My name is Maureen. My first husband Barry and I were together almost 19 years, married over 17. He died 5 1/2 years ago of respiratory failure due to a lifelong genetic neuromuscular disease called Spinal Muscular Atrophy. At age 2 1/2, his parents were told he would die by the age of 5. He proved those doctors wrong and lived to be 53. He never walked a day in his life. I knew his prognosis for dying young when I met him, but I fell in love and took the risk of losing him. He had every advantage in life that someone with his disease could have and we lived every day like there may not be a tomorrow. He almost died in May of 2008 when he crashed on me at home due to rapidly developing bronchitis. He developed a severe stress cardiomyopathy and the doctors didn't think he would survive, but I fought for him and against the odds, after 6 weeks in ICU, he pulled through, although he lost a lot of function and required a non-invasive ventilator at night and 24/7 care for the last 16 months of his life. He got sick again a year later but pulled through that with a couple of weeks in the ICU without needing to be intubated. He came down with a cold three months later, went quickly critical and decided against aggressive care and intubation. He had had enough suffering. He died peacefully, surrounded by the people who cared about him the most. I had been an extreme caregiver for the 18 years we lived together in our home, but much more so in his last 16 months. I found YWBB about a month after Barry died and went to my first bago at 6 weeks out. I still keep in regular contact with my first bago community in Connecticut, where we lived. I became a chat room regular and started meeting widows from outside of Connecticut. Six months into widowhood, a widower who called himself polarbear (he was an Arctic climatologist) showed up in the chat room one night. We had a good conversation that night and we exchanged Facebook information, too. His first impression of me was that I looked like a nun or a lesbian. My first impression of him? He was WAY too hippie for me! He came back again the following nights. On his third night, we were the last two people left in the chat room and, wanting to tell me a long story, he asked if he could call me. It was midnight. I gave him my number and he called and we talked until 6 AM, a lovely but completely platonic conversation. Long chats and phone calls continued over the successive days, when suddenly, our platonic tone changed and we both acknowledged that to each other. A few days later, we decided it was best to meet and decide if we had compatibility. We were investing so much time in communicating that we both felt like we needed to know if there was chemistry. He flew from Kansas to Connecticut three weeks after our first all-night phone conversation. The chemistry was instant. We were already in love by this point, really. He arrived just in time for my birthday in April. John went back to Kansas and finished out the semester (he was a geography professor) and then came out to CT and spent 2 1/2 weeks with me. During that time, we decided we wanted to be together. I made plans to quit my job, sell my house and move to Kansas. One day, in spontaneous conversation, I asked him to marry me. I needed to know his true intentions. He said, "Yes!" He spent the next 6 weeks doing research at NASA Goddard Spaceflight Center in Greenbelt, MD and we spent weekends together, either in CT or in the DC area. I started preparing my house to put it on the market. We also went skydiving together one weekend, and he met my (stunned) family when my older sister retired from the Navy. At the end of July, he finished his research, I had worked my last day, my house went on the market and we left CT and drove to Kansas, a place I'd never even seen. 5 days into that trip, my house sold. I returned home for six weeks, gave away about 2/3 of what I owned, packed up the rest, closed on my house, observed the first anniversary of my husband's death, and drove to Kansas. John and I were married 6 months later, a year after our first conversation, in March of 2011. We were incredibly happy. I decided not to go back to work as a physical therapist and I eventually went back to college. We traveled as much as we could and saw parts of Italy, Ireland, Australia, Peru, China, Canada and many US states, including Alaska and Hawaii. We had never been happier. In early January, 2014, I flew back to CT to bago with my best bago buddies. That day, John didn't respond to my text messages and phone calls. I was worried during the bago, but I didn't want to alarm some newbies that were there. My old friends knew I was concerned. At the end of the bago, I sat in my car in the parking lot and called the local police back in Kansas and asked them to check on John. They didn't call back right away, and I knew my worst fears would come true. The police chief eventually called me and I knew John was dead and even said it for him. John had died in his sleep just a couple of hours after our last Facetime conversation the night before. It didn't take long before word got out to my good friends from YWBB. I was surrounded in love by dear friends that night and the next day, when a huge crew came back to be with me, even after having driven a few hours the day before to come to the bago. Even some people I'd never met came to be with me. I can't tell you enough how much YWBB and this group of people has meant to me. I know I've met quite a few of you from bagos (like the awesome bago in DFW) and those I've met in my travels across the US since John died. Some of you had the pleasure of meeting John, too, although he was much more introverted than me and you may not have gotten to know just how truly amazing a man that he was. Thank you, though, to everyone who has been there for me, including during the time after he died when I had medical problems, major surgery and my cancer diagnosis. Some of you guys even flew or drove to Kansas to be with me before my first oncology visit, and many of you contributed to my book of support. What else can I say?

Gobsmacked, really, but pulling through with the help of people willing to listen to me whine... So much history...wiped out. It's like the house burned down and I'm trying to sift through the rubble for memories. Fortunately, my photos all survived. Maureen

My first husband Barry. This photo was taken in 2007 or 2008 when we were cruising somewhere in the Caribbean. My second husband, John, my polarbear, at our wedding 3/24/2011, barefoot on the coral and lava beach on the Big Island of Hawaii.

Ah...much, much better! Thanks to all the brilliant people that understand how to make this site work! Maureen

John?s YWBB post a week after we started talking, on a "Dating for newbies" thread: "I have been all over the place on this lately, but feel content this morning after much reflection. I have rediscovered how good it feels to have genuinely life-affirming interactions, indeed quality conversations with a quality person can and have made me feel alive again. There is a powerful, powerful urge for intimacy - both physical and mental - within me that is natural and normal. Without question intimacy of both kinds will be part of my healing and growth. The exhilaration and anxiety associated with this urge are also natural and normal. There is much opportunity for pain for myself or others I might interact with, and I am on very shaky legs like a newborn colt. The void left when Cheryl died is immense and will never be filled - in fact to try and do so would be both demeaning to the love we shared and to any new person in my life. However, I also feel that my capacity for compassion and intimacy and vulnerability and love remain and in some ways have grown. It is clear that I must be gentle with myself and gentle with others, and particularly gentle about developing hopes and expectations for myself or for others. I have moved from not feeling there would be much of a future for me without my beloved to awareness that the future has many pathways leading to it, and the change is confusing and scary but inevitable. Acceptance of this rather bewildering new life, and of my fears and hopes and needs, is the key. This acceptance can only be obtained through patience and serenity and confidence that healthy life and love await when it is time. The saying ?when the student is ready the teacher will appear? is just as apt when applied to love and romance. I may already know my next lover, perhaps even someone reading this, or she may be someone I have yet to meet, and the transition from separateness to togetherness will be a delightful and exciting and scary part of the larger journey I am making to fulfillment. I don?t anticipate putting myself out on dating sites and such, but I can?t say I never will. After all, I met the greatest love of my life so far on the personal pages of a newspaper. It?s rather like when I was young and horny and curious and didn?t know what to do yet being thrust into adulthood in a terrifying yet delicious world full of women. That said, there are three critical differences between now and then - all of which are legacies of my 19-year love affair with Cheryl. First, I know I can love, fully and deeply and sensitively and passionately, and contribute to the happiness and pleasure of another. Second, I know that I am lovable, deserving of love, interesting, attractive, and engaging. Third, after the trauma of her death, rejection and heartbreak have lost much of their sting. I don?t mind taking risks for the sake of happiness. Bottom line: I want to love and be loved in all ways, and believe that I will again have passion and romance in my life." Two short weeks later, he flew out to meet me and our love story took off. John was a mere 2 months out at this point. I was six months out. 363 days later, we were married. He was a keeper, for sure. I'm really missing him today. Thanks for listening. It seems I need ears today. Maureen

I had the distinct pleasure of developing medical issues 12 days after my second husband John died. I had medical tests and I had surgery 12 days after his memorial service. I was diagnosed with a rare and aggressive cancer, which was fortunately caught at stage 1. The cancer itself is chemo-resistive and there is no proven advantage to chemo in stage 1 cancer of this type, so I've been spared that ordeal. I am followed at what may be the best cancer hospital in the US, MD Anderson in Houston, TX, where physicians are well versed in my type of sarcoma. Just this week, I went to Houston for my quarterly scans and at this point, I have been free of evidence of cancer for a full year. I'm trying to be optimistic that I might be one of the few lucky ones that doesn't get a recurrence. The longer I go with clear scans, the better my prognosis, but this will follow me for life.