Where Do You Go When Your World Comes Crashing Down?
In December 2017 just before Christmas I lost my husband. 30 years of my life was suddenly ripped out from under me. We weren't getting along well for a long time, but he had been my husband for 26 long years! I tried to put on my game-face in public, but I was devastated!
My husband, who was 13 years older than I, had been very ill for the past 10 years. He had been in the hospital, and then went in for rehab because he was so weak. He was in good spirits, and I visited him often. He actually was glad to see me. He was from a family of 14 children, so he had a lot of siblings and nieces and nephews who would also visit. Money was getting very tight, and had been that way for a while after paying for so long on my husband's medical bills and prescriptions before he was old enough for Medicare and Social Security benefits. I had been his only caregiver for years, and the children weren't able to help a lot. There had been a lot of hurt in the past throughout our relationship, but it is what my world was and what I knew. I had to make choices and I was always second guessing myself. Did I do the right thing?
I was trying to figure out a way to get him home again. I needed to find a way that I could get some much needed help taking care of him. Things had been more than difficult before, but now it was more than any one person alone could handle by themselves, even if my family did think I was super woman, which I am definitely NOT! I had talked to all of the agencies out there and there just wasn't a lot of help available. We simply couldn't afford to pay someone to come in and help either.
In the past, I had seen my husband come through things that I didn't think anyone was strong enough to get through. He was truly the toughest, most willful, stubborn man I had ever met. This time, he had an extended stay so that he could get occupational and physical therapy. He had become too weak and couldn't walk on his own. I knew that there was no way that I could pick him up and carry him around by myself. He knew it too. It was actually his idea to go to rehab in an effort to try to get well enough to come home.
I did a lot of praying and asking for wisdom to make the right choices. I asked friends and family if anyone could help so that I could get him home. He could do the OT and PT at home too. He was making some progress, and was able to walk across the room. I wanted to get him home for Thanksgiving, but I knew that was unlikely. It meant a lot to our son to have his dad there for Thanksgiving. Thanksgiving came, and I took an entire home cooked dinner to him. It was a lot of work, but I'm glad I did it now. I didn't know that this would be his last Thanksgiving. Our son, his wife and new baby girl had Thanksgiving dinner with us at the rehab center also. It was good to have some other family members there.
Just after Thanksgiving, my husband quit doing his therapy and began to refuse. Medicare won't pay if he wasn't doing the therapy, and I would have to make a decision to either private pay for the facility, bring him home and try to take care of him, or get him on Medicaid. I was so overwhelmed and exhausted from it all, but I did what I needed to do to try to make things better. I went to talk to an Eldercare Attorney. I was also still checking into any other options we may have had, but the stress for me at this point was unbearable. I knew we couldn't afford to private pay.
I found out that my husband had acquired a bad case of bacterial pneumonia. He already had compromised lungs. They also said he was passing a kidney stone because of blood in his urine. They started giving him more pain medication. He had a tolerance for it because he had been on a pain pills for years.
When I would go to visit him, now he was sleeping all of the time. He wasn't answering his phone when I would call him when I was at home, and he wasn't calling me to tell me goodnight anymore either. I kept calling the nurses all night long checking on him.
The next time I went in, he couldn't even have a conversation with me without falling asleep. He couldn't even figure out how to use his own cell phone! That was when I began to question things. Were the antibiotics working for the pneumonia? How big was this kidney stone and could he even pass it? Was he being over medicated with all of the pain medication? I spoke with the nurses and his nurse practitioner. His NP said that she believed he was being over medicated and cut back on the pain meds some. At my insistence they also scheduled a CT Scan to find out how big the kidney stone was, which was then sent to his urologist.
When they cut back on the pain medicine he was in a lot of pain. Where had it all come from so suddenly? He wasn't like that when he went in there? Well, one of the pain medications they prescribed was Fentanyl. They had him on that pain patch and were also giving him Oxycodone. I started to research the pain patch and found out that it has been responsible for many deaths. There were also so many reviews that say it should be taken off the market. It has a black box warning from the FDA too! It seems that this pain patch can destroy multiple organs such as lungs, kidneys and heart...problems that D. already had! Why would they put him on something like that? Was the pain from organ damage that the patches were causing?
They wouldn't take the patches off and then they started giving him high doses of morphine! I was just beside myself and didn't know what to do. No one deserves to have this done to them! It was like there were things going on that they weren't telling me - things being done secretly behind my back. I finally made up my mind that enough was enough. I had to do something!
The next day I was going to go see the social worker and demand to know what was going on. When I got there, something told me that I should go see my husband first. When I got to his room he was laying on his back. He had developed sores from them not moving him or getting him up at all. They were trying to relieve pressure, but when he was on his back he couldn't hardly breathe. I went over and he started pushing me away like I was going to hurt him. I asked him what was wrong? I got close to him and told him who I was. He finally recognized me. Then he looked at me with fear in his eyes and said, "Come on, let's go!" I asked. "Where?" And he said, "Home!" Those are the last words he ever spoke to me. It breaks my heart!
At that point I started feeling his legs, his arms, his stomach and his head. He was cold and pale all over. I told the aide to go get someone to take his vital signs. She went out, and came back to tell me the nurse was busy. I asked her why I hadn't been notified of this horrible change in my husband's condition? Then I told her to find someone else to check his vitals! A nurse finally came in and checked him. His blood pressure was down to 64/48! He was dying and they hadn't even told me!
Then the social worker came in to talk to him, then left abruptly. I had been texting a friend and family members about what was happening. My friend decided to come and be with me. I was alone, as usual, trying to deal with it all. When my friend got there I met her at the door. The nurse told me in the hallway that they were sending my husband to the ER. When we went back to his room the nurses aide said, "That's the reason I didn't want to work in this hallway. I didn't want to be the one to walk in and find him dead!" Then another aide replied, "Well, that's all part of the job!" I couldn't believe they said that in front of us! I then asked, "Why does it seem that everyone else here knows that he is dying now but they didn't bother to call and let ME know?" Then I was informed that his oldest son, who is a paramedic and not a doctor, told them to take the pain patch off of him before they take him to the ER. His son had known everything going on for a long time, but was part of the select group who was doing things behind my back! He knew everyone at the hospital and rehab, so they would just call him to consult. I was his wife, but they didn't tell me or call me?
The ambulance came and took my husband to the hospital. After that pain patch was removed, his skin began to warm up and his blood pressure started to come up some. They said he was in bad shape though. The doctor said his white blood cell count was way up because of the pneumonia...that they were supposedly treating him for during the past several weeks.
They asked me if he had a DNR paper signed, and I told them he did not. Then they showed me a paper that was similar and said he had signed it several weeks earlier. He didn't sign it when I was with him, and I questioned if he even knew what he was signing? I suspect that his oldest son had something to do with that! He was having a really hard time breathing so they put him on a Bi-Pap machine.
They took my husband up to a room, and I and several other women family members spent the night. We were praying for a miracle. The next morning, the doctor that had prescribed the Fentanyl patches and the morphine came in and told us that he had multiple system organ failure! He said that his organs were shutting down and there wasn't anything to do except take the Bi-Pap machine off and let him go. I was totally shocked! He had pneumonia and kidney issues, but this is the first time I had heard about anything being wrong with his liver and other organs! I felt so angry! I knew it was from those pain patches! When they put those on him was when he started to decline so rapidly!
They took the Bi-Pap machine off of him, and with the entire weeping family surrounding him, and me hugging him with tears streaming down my cheeks. I whispered in his ear, "I love you, and I'm taking you home. I can't come with you right now. There will be people you love there to help you until I get there." Then my husband took his last breath. I was in a state of shock. I couldn't believe that this happened to HIM! I felt shocked, angry, sad, bitter...you name it, and I felt it. When they came to take his body, I could hear myself telling them they couldn't have him. It was my heart speaking even though my head knew they had to take him. My sister-in-law helped me get through that horrible feeling by comforting me, and then helped me out to the car.
I buried my husband on December 23rd just before Christmas. Christmas will never be the same again. My life will never be the same. As I said earlier, things had been pretty dysfunctional in our family and in our marriage, but it was what I was use to and what I knew. Then came all of the other things that needed to be taken care of, like insurance, social security, any pensions, the house, his truck etc. Do you know who helped me through this difficult time? Absolutely no one!
I am all alone. Too much time alone right now isn't a good thing. My parents both passed in 2015 (90 days apart). My sister calls to check on me, but I feel like it's only because she feel like it is her obligation. I have a cousin who calls me weekly to check on me too. But now it is really sinking in. I am an orphaned widow, who had been my husband's caregiver for years; but because I'm not old enough or disabled, I can't even draw on my husband's social security! Just after I found all of that out, I found out that Fentanyl pain patches and other pain medication are what killed rocker Tom Petty and Prince! Same thing - multiple system organ failure! Now what should I do, try to file a wrongful death law suit? I keep asking God to send me an angel to help me with all of this. I sure hope he is listening.
My finances are another issue. I ran a home business that was doing very well up until the end of 2016. As my husband's condition got worse I had less time to work. My income went down dramatically! A few months prior to him passing, he put his son on his personal savings account, no doubt at his son's suggestion. I believe there was quite a bit of money in there. Since his son was a joint owner of the account now, he got the money that was in it when my husband passed. I had nothing at all to live on, so I had to sell the tractor to get money to tide me over until I can figure out what I'm going to do. I felt guilty selling that tractor, and I even cried when they pulled out of the driveway with it. My husband loved that tractor, I'm sure it was probably more important to him that I was. He was planning to sell it anyway and had his son check into it. It's fortunate for me that he didn't sell it, because the money would have gone into his personal savings account and his son would have been rightful owner of that also. Luckily, his paid for the funeral expenses out of his father's savings account, and I wasn't left in debt with that.
I live on rural property that is going to be too much for me to handle, as it has been for quite some time. I have no choice other than to start working on a plan to sell our home and property and find something that I can handle better by myself. The problem is that everything has deteriorated and things have become cluttered over the past years that my husband has been sick. I don't know how I will ever do it all with no help. It all seems so unfair.
Things are not looking so bright for me at this point. I am hoping that starting this blog is going to be a way for me to get my feelings out and work through the things I need to do. It's hard to grieve, do all of the things I have had to take care of, and worry about my finances all at the same time.
I have good days where I am full of hope and I know that everything will work out as it should, and then I have bad days where I feel so depressed I can barely do anything. I can't eat, can't sleep right, and I feel like I am living in some sort of alternate universe that isn't really my life. It all seems like a horrible nightmare.
It seems that just when I am feeling at my lowest point, a friend will ask me to do something with them. I don't really feel like going out, and truthfully, I just want to hide away and cry, but I know that's not a good thing to do. Friends seem to help when I'm at my lowest, and do nice little things to to try to make me feel better. A friend called me the other day and asked me to go to lunch with her - her treat. My daughter also surprised me and brought me a home cooked meal the other night. My duaghter has 4 children of her own now. I doesn't seem possible that my daughter could have all of those children already. Time seemed to fly by. I notice that the older I get the faster time flies.
It's the little things like being treated to lunch because someone cares that keep me going right now. Those things give me some hope that through it all I will find my new normal on my own.
Lesson Learned: Each day is a gift and not a given right. We should live each one as if it will be our last, and live life to the fullest, love with all our hearts, and let go of past hurtful memories so that we can move into our future.
#HopeIsAlive, #LoveOfFriends, #LoveOfFamily, #SendMeAnAngel, #LIVEWithDonna, #ThePhoenixRisingWoman
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