A journal of healing

Posts tagged ‘death’

Fall endings

It was a wonderful summer. It was the first summer I have had off since I was a high school teacher. I thought I would be bored, but I was far from it. I probably did more reading than I have done since I was in college. I also had one of the best gardens I have ever had. I had time to water and weed it and I was constantly tending to the plants. But now fall is upon us and I must say good-bye to the garden for the winter.

This is very difficult for me to do. I hate watching the plants wither and die. We have not had a frost yet, but when we do, the impatiens that are left will be melted in the morning. The squirrels have been burying nuts in the pots and so many of the plants are already destroyed. I think all the nut planting is a sign we are going to have a tough winter.

The trees are just starting to drop their leaves. The yard is completely private with the canopy of shrubs and trees. It will feel so exposed soon.

But I know that this is the cycle of life. We all come into the world for a short period of time. The purpose is to spread joy and make the world a better place. I think this is a life purpose of all things. I also believe everything has a spirit and we are all connected. I feel very connected to my garden and all the animals that live and visit in it.

This fall is going to be very difficult for one of my friends. Her husband has just been diagnosed with end stage cancer. There is no hope, no future.  He will be here for only a very short time. He is in the fall of his life.

I have been thinking about my friend and her husband constantly. What would I do if I was her? What would I do if I was him? Getting a diagnosis like end stage anything is horrible. She has been so strong and I hope she knows she is surrounded with love. I wonder though how I would feel if I was told I had a month to six to live. What would I do with the time?  How angry would I be?

I have spent time in quiet reflection just thinking about that question of what would I do? My mind cannot process it. I have even discussed it with my husband and we both came up with a few lame ideas, mostly travel. But what if I could not travel either?

Reality hit me square in the eyes. We should all live like we are in the fall of our lives, because in essence, we are all dying. We should not live with the concept of ignoring that fact nor should we give up because of the inevitable end.

We should live with gusto and a fullness of life every day. It means embracing every moment because each one is special and it will never be the same. We should celebrate ourselves and our relationships because they are work we have done. Life is full of ups and downs and the fact that we have survived the ride is success in itself. Nothing comes into this world without leaving an imprint somewhere.

 

A tribute to my friend

  She lay there silently, so small in the bed. She was peaceful. Her chest rose and fell with each taxing breath and occasionally I could see a shudder from her heart. My friend was dying. How did this happen so abruptly, I thought to myself. But it wasn’t fast at all. It was years of this battle and much pain. It seems so inconceivable that her fight was coming to an end. The best thing was she would finally be able to be with the love of her life again.

I met her when she came back to work seven years ago. I was hired while she was out on sick leave. She had fallen and shattered her leg right below her hip when she was trying to open the garage door and the rope broke. At first, she seemed very distant to me. She was the recruiter for the company and was a bit put out that she did not hire me. She was always protective of her new hires. We worked in the Human Resource Department but I was in charge of training. But we attended the same meetings.

It took a while for us to get to know each other. We were almost the same age. She was 8 months older. I used to call her the ‘old lady’ as a joke. Our sense of humor was the same; flippant and rude and on the lewd side. Once we became friends, she would whisper something funny in meetings that only I could hear and get me in trouble because I could not hold back my giggles.

I do not remember how or when, but somehow, she began to trust me. She shared what was going on in her life. She had ovarian cancer. She went on heavy doses of chemo and that may have been one of the reasons her leg broke. She was wearing a wig but it was such a good one and I never knew. She was on strong pain medication as the leg did not heal well. She would go out soon for surgery to have the pins realigned as they had moved and were causing her great pain. Of course recovery for that would be difficult with the cancer and chemo.

But through all that, she always had time to sit and ask, “How are you doing?” And she was really concerned. It was not just a polite inquiry.  We talked about the strong medications we were on and how it messed with our weight. She would rarely complain, just more vocalizing her situation. She was never sorry for herself and distained pity. We would share our opinions of those we worked with finding that we had the same concerns and likes.  They did not treat her very well at the agency. But they did not treat many people well there.

She worked as much as she could. Then about two years ago, she started to really have some problems. The chemo she was on was just about killing her. She would make it to work and put in a full day. But she would come to my office just to breathe and relax and let the pain wash over her. She knew she could tell me what was going on without judgment. She was not eating or sleeping. She was exhausted and her counts were not great. She was going to go on something else. But this was the last fight. If this did not work, she was going to die.

She started on the new chemo and things seemed to be looking better. But the chemo was hard on her. So last fall, she finally decided that she needed to put all her energy into this process and stepped away from work. She was not retiring or quitting, she was just taking a leave. It was the best thing for her. I would miss her at work. I threw her a little luncheon with just a small group of us who knew what was going on. We gave her gag gifts and had a lovely time.

Four months later, I had to retire. My battle with my ongoing health issues forced me to make the same decision she had. Life was too precious to let the miserable atmosphere at work prevail in our lives. They threw me a party, but did not ask her to come, which made me angry. I retired, not planning to ever return.

But the month before I left, I found out that they were going to fire my friend. She was on leave, but it was at that point an unprotected leave as she had used up all her FLMA. Supposedly, her doctor has sent a letter saying she would not be coming back. The truth was the doctor’s letter said she would be out for another six months. But they let her go anyways. It hurt her to the core. Her job was everything to her. When she would go to chemotherapy, she would try to recruit nurses. She was always supporting things on their Facebook page. She believed in the place and had hired a majority of the clinicians there.

We had lunch once in a while when she felt up to going out. I went to visit her at her house and on one occasion when the weather got nice we went to a park for an afternoon. We would chat on the phone for hours sharing recipes and memories. She told me of the death of her husband. They were married for 12 years and had three boys. One day, he was killed on his motorcycle by someone who was not paying attention. She never stopped loving him. She would always share that she considered herself still married to him, 43 years later. One visit she told me about how she tended his grave and that she was going to be next to him.

In the beginning of June, my husband and step daughter were headed for our annual vacation to the Thousand Islands. She has called the night before and I had missed the call. Since I knew our chats were usually lengthy, I did not call her back. Then, I did the unforgivable. I forgot. Three weeks went by and I kept saying I had to call her. I wanted to wait for the “right time.” And then the day would get away from me.  I will never forgive myself for missing that call.

I got a text from a mutual friend to say she was in Hospice. I was devastated. I called her son who told me it was fine to come see her. He and I chatted for a brief bit. Her last words were to him. As he was leaving the night before, he called out, “Love you, Mom.” And she replied, “Love you too.” It was the only thing she said all day. She was unresponsive after that.

I did go see her. I said good-bye and wished her well on her next journey.  I knew her husband would be delighted to have her back again. I knew she was headed for a better place that was pain free. But I was going to miss her.

It will haunt me for the rest of my life about not calling her back. Did she call to say good-bye? She had fallen very ill and knew her fight was over. Our previous  phone call, she has said she was doing better.  I knew that the previous couple of months she had been fighting an infection from a tooth. She did not tell me how bad it really was. I should have guessed something was up because she would not physically get together. That was so like her to not have people worry about her.

But my friend is gone. What a lesson she left me with. Now is the most important moment of your life.

 

 

What would Mom think?

Today is Mother’s Day. I have been thinking a lot about my Mom the last weeks. She died when I was 23. My relationship with her was not very good most of my life. I often wonder what her take was on our relationship. I also wonder why she was the way she was. Through pictures and letters I discovered a different history and that has helped me to understand a bit where she was coming from and with the way she was.

Mom was the older of two girls. I know so little about my Grandparents. We were told my Grandfather died when Mom was very young. This turned out to be not true. After my Mom died, I got her steamer truck full of things from her life. In it was a box of letters from her father to her. He left the family when she was 15 and moved back to the family homestead in West Virginia. Mom told us that he died from being gassed in WWI. Well, he was gassed, but he died in a sanitarium from chronic alcohol abuse.

My mother must have been so embarrassed that she hid all this from everyone. I wonder if my father knew. I can understand why she did.

My father’s family was very wealthy and upper class living on Long Island. His father was an ambassador from Spain and I am not sure what else he did. He died when my father was three in a tragic accident. He was crossing a rail road and was stuck and got hit by a train. My uncle was also in the car and died. My father’s mother was pregnant with my aunt. Again, not much was ever shared with us about the past. My aunt wrote us all a lovely little book when my father died about growing up. They were well to do and privileged.

My mother married into a dream. She came from Detroit and I am sure there was not much money as her mother worked. The only proof I have the early years of their marriage are pictures of Mom in very lovely evening dresses and at dinner on cruise ships. They had a nice house with domestic help and my brothers and sister grew up attending sailing classes at the Yacht club where my parents were members. Being the youngest, I had a much different upbringing as by the time I came along, the money was gone and my father lost his business.

My Mom kept up pretenses all my life. My Nana, her mother-in-law, was a lovely woman but the truest snob I have ever met. We were not close. I am sure my mother was worried her whole life that she, the little girl from Detroit with hillbilly relatives, would not measure up. I am sure she worried about her pedigree. Hence, she did not speak about it. But she played the role of the grand dame right up to the end of her life.

Her gift to me was to give me some class. I grew up learning about etiquette and an appreciation for the finer things. Our house growing up was filled with silver, crystal and fine linens. We always had a proper dinner and I learned the use and procedures for setting a formal table. All this of course is now useless, which I think is sad. And now, I have what remains of the silver and crystal and never use it. I think my mother would be disappointed if she was still alive. She gave me traditions, some I still hold on to. But my sibling’s relationships are disconnected so the traditions have morphed into my family’s own.

My Mom was diagnosed with terminal lung cancer in July of 1978 and was gone the next January. She did not want to talk about her illness. I think about that time and I wonder how she felt when she heard the diagnosis. Knowing my Father, I am sure she held back her feelings even from him. I was newly married but I spent the last two weeks of her life with her. She was in the hospital dying. They did not have hospice services like they do now. Even then, she did not share much. She did not complain about her pain other than to ask me to rub her back. As she slipped further and further away, we would sit in silence. She was the first person in my life to die and I had no concept of death.

I was the one who received the call that she had passed away. I now wish I had been there with her, but I was unaware that she was that close to death when I left that afternoon. I had to tell my father she was gone and that was only the second time I ever saw him cry. Emotional demonstrations were not allowed in my family. This is a remnant of their upper class behavior. “Stiff upper lip and all.” I never fit in that category and was constantly chided for being so emotional.

It has been almost forty years since she passed. I do not remember the sound of her voice. I only remember her face by pictures. She was the rock and glue of the family and when she passed, the family broke apart. I ended up having to take care of my father for 13 years, which was a huge strain on me. I am still close to my oldest brother, but he practices the same emotional restraint my mother had.

I look around my house and see pieces of her in my decorating. She loved flowers and taught me well about gardening. I have multitude of houseplants, much like she did. I have her love for sterling even though I hate to polish it. There is not much left compared to what we had growing up. My father sold off a lot of it and I remember being furious when he did. I felt like he was selling of pieces of my Mom.

I do not use all the china I have and now I am looking to get rid of it. I know that sounds callous but my nephews have their own or they don’t want it. There is no one to pass it on to. I have Waterford crystal that sits in boxes and other stem wear in a china cabinet. I have linens boxed and collecting dust and mold. No one wants these things anymore. My husband is content with paper plates and vinyl tablecloths.

There are other reminders of my Mom every day. She loved cardinals. I always have had a cardinal family living in my back yard. One time or another they have flown into the house. I took it as a symbol of my mother’s approval of this house.

Even being as old as I am, I do miss her, especially now. I want to ask her how she felt when she was diagnosed. I am facing my own diagnosis of Chronic Kidney Disease, Stage four, which has its own path to death. I want to know her truth. I want to know about her early years. She was only 58 when she passed. I would have liked to share old age with her. I wish she had shared more about who she was instead fulfilling some role she felt obligated to be. There were a few  glimpses of the real Mom in my late teens when my father was traveling and she would literally let her hair down.

But most of all, I would like to know what she thinks of how I turned out. And did she love me.

 

 

A Pissy Situation part one

I have been putting this post off long enough. I wanted to tell a few people to their faces but that does not seem to be happening. I feel like I am about to burst and I need the release my blogging gives me. I have been writing about my life now for over six years and now it is time for me to write about my death. Yes, that is correct. I am coming into a phase that everyone eventually arrives at. It is all a matter of time. Mine has just been defined a little more accurately. This may seem dramatic, and it is. But I am not going to soften this because it will make it easier for others. Nope! This is about me, totally me and what I am feeling.

In 2006 I was diagnose with Psoriatic Arthritis (PsA) and Psoriasis (P). It took over two years for the diagnosis because I am fat. I went from someone who played tournament level tennis three times a week to someone whose hands were claws and could not walk. Everyone blamed the fat for the joint pain. Finally, when my hands curled up, I was sent for tests and to a rheumatologist. Oh boy, did I have inflammation. I did not develop the psoriasis like anyone else and so they misdiagnosed that as well. They said it was a form of hives and it was everywhere. Now, they know what my type of psoriasis I have.

Why did this happen? I truly believe the trauma of going through a life altering situation triggered it. I was going through a divorce after 27 years of a miserable marriage. I had to sell my house as part of the divorce and get my own place, which I did. But then I lost my job the day after I signed the mortgage. It was so terrifying for me. I only had the support of one or two good friends to get me through it. My social life had been based on my husband’s circle.

It was like a cascade of failing health thereafter. About a year after I moved in to my home, I had an episode where I might have had a mini stroke. I went to the hospital and they discovered five blood clots, including one very near my heart. I have written about this before so I won’t at this time. The diagnosis and the whole event probably saved me from the grave fifteen years ago. I have an inherited blood condition called Factor V Leiden. My blood clots too much. My father had it, his mother, and my brother has it. I was fine and have been on a blood thinner ever since. But this led to a gynecological issue which required more medical attention. But for over a year, I would bleed out during my monthly. I almost had to have a transfusion. All of this was over the course of two years.

Meanwhile, my body was revolting with inflammation. There is a strong correlation to stress and inflammation. During these years I met my now husband who moved in with his 13 year old daughter. We both went back to college and we were working a multitude of little jobs to get by. His daughter was not happy and we had to contend with her mother who would not stop interfering. We eventually shipped her off to her mother in California which was the right thing to do.

So back now to 2006: Once I was officially diagnosed with PsA and P, I was put on huge doses of methotrexate, prednisone, and Advil. About a year in, I started to have cranberry colored urine. The doctors said it was from the blood thinner. They did nothing and I stayed on the drugs. Meanwhile, I was putting on weight like crazy. Finally, a blood test revealed that my A1C was 13 and the other labs were indicating some kidney issues. They actually told me to diet. Really? I went from to low blood glucose with an A1C of 5-6 for most of the time since they tested me to 13 and its diet? I finally got to the rheumatologist who said looking at my labs, “did anyone tell you your kidneys crashed?”  They did not.

For the following years I was on just Enbrel for the PsA. They did nothing else. My glucose went back down although not where it was. Everything seemed to be ok. My physical ability was never the same however. Then I started passing kidney stones. I am talking rocks. I passed one so big it made my doctor cringe. I passed over 100 stones. I never went into the hospital. I just suffered on my own. They found five rather large ones in my right kidney and said there was nothing they could do. They were so large, they would never pass. They put me on Allopurinol finally only four years ago to help with the formation and it did help. But the damage was done.

It seems that these kidney issues are not uncommon with someone with PsA. The disease changes your blood chemistry to be more acidic, and uric acid is formed in great quantities. The stones I passed were all uric acid based. Think battery acid for piss. All of this can damage the kidney if left unchecked. I was unchecked for too long.

On top of that issue, about four years ago the Enbrel stopped working. I had to go on something new. I went through eight different highly potent biologicals in an attempt to improve my condition. They all had horrible side effects. The worse was chronic diarrhea. I had it so bad on one drug I could not drive to work without an issue. Work was only 20 minutes away. One morning I had to pull into a park and shit against a building. There was a Sherriff on the other side and if he had gotten out and walked around I would have been arrested. I exploded three times at work, once covering the bathroom that the CEO used. It was intolerable. They all made me sick and they did not help the PsA or P. I was getting covered with splotches and my hair was falling out. I lost  a lot of my mobility and started to need a cane.

In 2016, I was put on Humira. It did nothing for me and I had to use Advil to be able to walk. I was not taking big doses of Advil, but I should have been told to take none. The doctor knew I was taking it. The Humira gave me such issues that I had to see a cardiologist. They found nothing wrong and I finally demanded I stop the Humira. In 2017, I was put on an outrageously expensive shot called Stelara. My world changed immediately. The psoriasis was gone. The PsA was less and I felt like a human being again.

My labs were indicating things were not as rosy as I felt. First my A1C started to climb again. My blood pressure was getting very high. I put on weight, as I did with all the drugs. But the kidney function was declining. In September of 2017 my GFR (which is the measure of output the kidneys are functioning at) was down to 23. I had been there once before when I was passing a huge kidney stone and I got it back up to about 40. The GFR is saying that my kidneys were functioning at about 23%. Not good.

I decided I needed to change my life. I needed to destress. My job had become horrible and intolerable. I did not need it. We had been planning on my retiring anyways in another two years. I took the leap.

The next lab which was a month after I retired my GFR went up two points. I had made the right decision. But I felt like crap. I had little energy. I was short of breath on exertion, which was something I never had before. I was sleeping terribly and constantly tired. My PCP wanted me to see the nephrologist to see what she had to say. It took three months, but I finally got an appointment.

In the beginning of April my labs were God awful. I have enough medical background to know I was in deep doo doo. I had my first meltdown of what will be a series I am sure. My A1C had gone up a lot, and other readings indicated something was going on. Since I was put on the Stelara, my triglycerides were climbing and they were now three times what they were a year ago and at a dangerous level. But the worse part was my kidney GFR went back down 2 points.

I took my husband to the nephrologist appointment because I knew it was not going to be good. It was not good. I really like this doctor and had seen her way back in 2009 when I had my first issue. She told it like it is and what I am going to have to face. It was shocking to tell the truth and to face mortality is the worse feeling in the world.

This is the bottom line: I am facing dialysis. It may be in a year or less, or it may be two years. But it is going to have to happen as I will die otherwise. Once I am on dialysis, the prognosis is five to ten years. That is for someone who is healthy otherwise with no comorbidities. And yes I know, some people live for years and years on dialysis but guess what others don’t. One thing I am not tolerating is Pollyanna like remarks. I will go into more of all this in another post. Bottom line, my life has changed drastically and I have been told what my future holds.

Am I sad? Yes. Am I frightened? I am terrified. But I am going to fight like I have my whole life. Right now the goal is to preserve what kidney function I have. I am drinking sodium citrate twice a day to turn down the acid in my blood. I am taking more insulin. Because my kidneys aren’t functioning well, I am extremely anemic (which is why I am so friggin tired). I am on high doses of iron and vitamin D. I am trying as best as I can to be more physical. And I have had to change my diet drastically. I am going to see a renal dietician next week.

This is the most ironic part of all this: all these years I have been dieting on whole grains and tons of chicken and vegetables, I have been hurting my kidneys. I have to right now avoid potassium at all costs. Who knew my stables of broccoli, Brussel sprouts, darks greens and chicken were the worse things I could be consuming. In the effort to meet everyone else’s standard of looking appropriate, I was poisoning myself.  I will be going into this more as I learn about it. But am I angry about this…well yes I am.

In truth, I am very angry about the whole thing. I went to a renal class already as the nephrologist suggested it would be good for me to know what I am facing. She knows I already have done a lot of research on things but she wants me to get the truth, not the Internet truth. I am actually looking forward to seeing the dietician because for once, it won’t be about being fat. This is one thing I am going to write about because the discrimination of people of size is outrageous in the kidney world.

My life is altered completely. I am not taking crap from anyone. I am going to do what I want without guilt. I don’t think my husband fully understands, but we have talked about it and he is compassionate. That’s all I want right now as I lick my wounds and get my fierce up. I am glad I am retired as I can do as I can when I want. My future will be tethered to a machine, but for now, I am not. And I am going to treasure this time.

 

 

 

 

Death is not for sissies.

fogfalls

Death is not for sissies. This past week was an experience I would not want to repeat. There were moments of beauty and love that will be in my heart forever. But watching someone die is not something I want to do again. Now I know that I will not partake in Hospice work as a volunteer, even though I am trained to do so.

My mother in law (MIL) spent over a week in the hospital. The family dynamics made it a difficult situation. The oldest son wanted control of his parent’s estate and health proxy, but it was given to my sister in law (SIL). My hubby is the middle child and always on the outside looking in. There were arguments that were nothing but my BIL and SIL battling for control.

My MIL was admitted for aspirated pneumonia. She had dementia. She has spent the last couple of years in and out of the hospital and was placed into a nursing home. The place she was in was depressing and ugly. It was close and convenient for my SIL to go to. Mom was kept pretty much in a wheelchair when not in a tiny half room. My SIL moved her out of her private room and told no one. After my father in law passed last September, the family splintered as the SIL was totally in charge of the estate and money and what happened to Mom.

From the moment Mom was in ED, my SIL thought there was hope she would recover completely. She took measures to keep her alive that she should not have. The Wednesday after she was admitted, the charge nurse on the floor pleaded with her to allow her to go into comfort care and be released from her illness. They were suctioning her, giving her nebulizer treatments and she was sustained on high power oxygen. She could not eat. They were giving her mega doses of potassium IV and antibiotics. Her infection stopped spreading, but it did not get better.

Finally, on day six, my SIL agreed to comfort care. BUT….she did not want them giving my MIL any morphine. She felt that was what killed my father in law. Long story but the bottom line is my SIL is very selfish and undereducated and once she gets an idea in her head, there is no changing it. She named the one insistent nurse: Nurse Kevorkian. And she was very upset with the fact that Mom got a variety of nurses, care technicians and PA’s. She hated the PA’s and was quite rude to them. The MD assigned to Mom said she would not make it from day one, but agreed to let my SIL decide when to go to comfort care. Then she liked him.

Finally on day six, she signed Mom over to comfort care, they wanted to immediately removed the IV. My SIL almost changed her mind accept that it was explained to her that it was painful and not doing anything. It took another day for her to agree to have the line removed. She did not want the O2 turned down or changed to normal. The staff, fortunately, have to followed protocol and when we left at night they took her off the high pressure and put her on a very low dose of 02. Mom hated the cannula and pulled it off her face. SIL kept fighting with her to put it back on. When I felt it, I told her there was barely anything coming through and I said to her, “Let’s leave it off for a while.”

But the hardest thing for SIL to understand was the course of medications they give the dying. She kept saying no to anything but they did medicate her. They told her the morphine (they used the name of the drug and not the word morphine in front of her) they were giving her was helping her breath, so she let them administer it. Mom became very agitated and they wanted to give her Ativan to calm her. They tried to give her a pill which of course she could not swallow. But when they came back to give her the Ativan sublingually, SIL had a fit. That made no sense because she was OK with the pill of the same drug. For three hours Mom thrashed about.

But she did drink a sip of water when they tried to give her the pill. My SIL went off the deep end and said she could finally eat and ordered food. They brought trays up of pureed foods which of course she did not eat. But she offered to her son when he was visiting.

Mom spent the next couple of days in and out of it. She would call for Clara. She would smile at me when I leaned over. She knew us. And then the last day, she was totally out of it. She was talking to whoever she saw in her “sleep”. She made hand gestures that indicated that there were people in the room for her. We could not understand her because she often switched to French, which is her native tongue. She would hold out her arm, her fingers grasping for someone. At one point she made the gesture of “you and me” and then smiled. But there were many moments of anguish and pain as her face contorted in a painful grimace. Her body would become rigid and she tried to sit up. She had longer pauses between breaths (apnea) and then would shutter and take the next breath. Her toes were a curled mess. She suffered the indignity of being rolled in the bed to get cleaned up and left for hours in uncomfortable positions when she slipped in the bed. Before they put her on comfort care, she would moan. I never understood how my SIL was not bothered by that.

I was angry at my SIL for allowing my MIL to suffer. The nursing staff was very nice and they would talk to me instead of my SIL because she was so rude to them. They knew not to say anything about drugs in front of her. They would tell me her stats and were very upfront with me. After being there from 9 am on Wednesday, I asked the nurse if she would make it through the night and she felt she would. Although her O2 level was fluctuating, it was rebounding back to 90. We left, my BIL left and then at 9, my SIL left to go home for the night. Mom was sleeping quietly and we all thought she would be there the next day. At 10:15pm, all alone, she crossed over. Eight days and nights of being by her bed and she still died alone. I think she knew my SIL would have freaked.

The next phased of drama is the service and funeral. We talked about the planning of it front of my MIL every day prior to her death. My SIL was going through menus and calling places. One night, she and my hubby wrote the obit and talked about it very loudly in front of my MIL. Then, the next day, she said no more talking like that in front of Mom. She had Googled it and said she found out Mom could hear. I told her that from day one, but what did I know? No matter what anyone said, my SIL wanted what she wanted and that is what would happen. I do not care as I do not believe in big elaborate funerals. Spend the time and money when the person is alive. But at the end of the month, there will be a memorial service and funeral.

Now, the real battle starts as the accounting of the estate will take place and my SIL is going to have a lot of explaining to do. Can’t wait.

 

 

 

 

Imminent death

Cubid

Last Tuesday, we got a frantic call from my sister-in-law (SIL) that my Mother in law (MIL) was admitted to the hospital with pneumonia. She was in the ED and not doing well. My MIL is 91. My husband and I left work and headed over there.

The poor woman was in terrible shape. She could not breath, was very agitated, had a fever and was dehydrated. My MIL had been in hospice once before, but now was under comfort care, which my SIL had agreed to. Under comfort care, they do not do anything to prevent death, other than make someone comfortable. In the ED, my SIL did a 180 and had them do whatever they could for my MIL in the hospital. She was even agreeing to intubation if needed.

My in laws both had very well written advance directives and MOLST saying they did not want any intervention that would mechanically support their lives. My FIL had actually signed himself into hospice when he knew the end was near.

The issue is that my SIL has total control. She is her health proxy. This has been a source of consternation for her oldest brother who wants total control of everything. Over the death of their father, the wound widened and I do not think it will be ever resolved between the two of them.

Meanwhile, my MIL is on high pressure oxygen, nothing by mouth, and is hooked up to IV’s. We were told on Wednesday night to consider comfort care as her time was short. My SIL refused. They continued with nebulizer treatments and suction up until Friday when they said they would no longer provide suction other than in her mouth. They had been shoving tubes down her to help her clear out. She has dementia and is incoherent most of the time. Thursday, she was out of it all day. My SIL said she was just sleeping, but no one could get her to “wake up.” The staff was pleaded with her to change her level and release her. My SIL kept saying “what did they know?”

Yesterday was the day she had agreed to sign her over. We all went to the hospital, including two grandchildren. We spent the morning at the funeral home planning her funeral. When we got to her room, she was more coherent and was telling all of us to enjoy our lives. She told us to take vacations and be happy. It was hard to understand her so her granddaughter decided to be translator. I believe she was embellishing her comments a bit. We had a priest come in and do last rites. After that, she seemed calmer and would come and go. She kept looking for her husband and brother, both passed.

However, my SIL reneged on her agreement and said she was not going to put her in comfort care. She said she likened it to putting a dog down. The MD stopped by and said that he did not think she was in pain and another 24 hours would not make a difference. She took those words as to she was getting better.

They have been very clear to all of us that Mom will never come off the high pressure O2. She is at the highest setting. Since she is on that, she will never eat through her mouth. She is wasting away. I am waiting for my SIL to agree to a feeding tube and then all hell will break out. Her potassium was so low, her toes were a curled knot. I have had toes cramps and they hurt badly. They are passing mega doses of potassium via IV and they said they cannot keep doing that, either. She has aspirated pneumonia which means she choked on something. They also discovered she had a heart attack, possibly when she choked. Her infection has not improved, but also has not gotten worse, which my SIL is taking as sign of recovery. She is so weak and is wasting away.

I love my mother in law. I have only known her for thirteen years. When she started with the dementia, they moved here from Florida. At family gatherings, she was often quiet or nasty. She would change when I was alone with her and was always sweet, even when she repeated herself over and over. My SIL never stayed with her over night for all the times we needed it when my FIL was sick. I did. Even now, she smiles at me when she is awake. Yesterday was weird because she did not know my BIL’s wife even though they have been married for almost thirty years. They, my MIL and other SIL,  have not gotten along for many years, stemming from issues my  SIL caused. However, yesterday she knew me and was asking for me. That did not help with the hard feelings.

It has been a long week. I am spending my days and evenings with my SIL and MIL. They restrained her as she keeps trying to pull everything off of her. I take that as her way of saying “let me go!” The only time they would allow her off of them is if my SIL and I are both in the room. They put them back on when it is just my SIL. I have been doing touch therapy and it helps to calm her down. My SIL is rude to the care team. I am not and I am asking the right questions. A couple of them know who I am as they have worked with me at URMHC. In my own world, I am way past due for my Humira for my PSA and I cannot take it and go to the hospital. It lowers my immune system and that would be like an invitation for me to get sick. So my own pain level is through the roof and I am gimping pretty badly. But I get to go home at night and my MIL will never, so I buck up.

I understand the decision my SIL has to make is hard. But she is disregarding what Mom wanted completely. This has pissed off my brother-in- law and his wife to no end. It is very uncomfortable when they are around which has not been too often. Somehow, they are pissed at my husband and I as we are trying to not get into the fray and keep our mouths shut. My poor husband has been an family outcast most of his life, partially his doing and partially because he is so neutral when it comes to family issues. They love drama.

I put my Mom into Hospice when she had cancer and made preparations to bring her home to die. She died that night. I was 23 years old. It is a long story why the decision was mine. My other SIL had to do the same thing for her mother a few years ago. It was not an easy decision for either one of us to make, but in the best interests of our mothers, we made it. I get that there is always the concern about such a decision; the what if?

I am hoping today my SIL will do the right thing. They will give her morphine and turn down the O2. I honestly think it will be quick and I hope not too dramatic. When we left yesterday, my SIL said, “I wish she would just fall asleep and go.” She does not equate the high pressure O2 as what is keeping her alive. But, my SIL is not the brightest bulb I have discovered.

My BIL said something so cruel that I was stunned the other day. He said, “Mom chose her to take care of her and so now she is getting exactly what she deserves.” Nice! No one deserves to die like this.

 

Death of a parent

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Nothing prepares children for the loss of the parents. But it is the way of life to succeed your parents. Somewhere I read that having children was the whole thing about being alive; the sole purpose of your existence. That’s upsetting for someone who is childless. But I do not agree with that statement anyways. There are many reasons for existence which are as individual as the being.

My FIL (father –in-law) is in the beginning stages of dying. I have learned a lot about hospice and there are stages of the dying process. He is near 95 and has had a good and honorable life. He has declined any intervention that would prolong the process. My in-laws are in denial of the situation. I think my husband is the only one who has accepted the inevitable. Hence, there is terrible friction and drama going on with the family.

The issue that makes it worse is my poor MIL (mother-in-law) has Alzheimer’s and it has also progressed. I have been saying we needed to place her in a good memory care unit for years. But I am only an in-law and have been ignored. Now, in crisis, they are scrambling. Someone has to stay with her 24 hours a day. It is a sentence of hell. She can be abusive. She smells and the apartment is hot and also smells. My in-laws have been on their own for too long and the care my MIL has needed has not been provided.

All this tension has brought family issues right up to the surface. My husband is feeling all the neglect he felt as a child. He is being ostracized by his siblings in the process of decision making because he has not been very involved by his choice in the past. This too is hurtful. My BIL is a know-it-all and can be very demanding to the point I have to walk away. My SIL is a princess who has not come to terms with reality. She also has refused to stay overnight with her own mother which is leaving this responsibility on her brothers and their wives. I have stayed twice but I now refuse because she will not stay. They also have no respect for my husband or me.

They found a place for my MIL and they are now in panic mode to get her placed. No one has insisted that my MIL see a doctor in the past couple of years and of course she has put up such a fuss and refused to go. MY FIL gave up fighting her. Now someone has to take her for a physical on Monday. It is not going to be easy but I am so glad because I think they will see there are other issues present. She was diagnosed with breast cancer seven years ago and had a double mastectomy. Her progressive weight loss and decline I think indicates more is going on. But if they had worked with her and got her the medical help and interventions earlier, she may have had a better quality of life in the last year.

My FIL is in kidney failure. I found out yesterday that he had an MI (mild heart attack) a short while ago and it went undiagnosed. Now he has congestive heart failure. He is unable to process the fluid retention he is having. They will make him comfortable but no one has said what needs to be said and that is Hospice Care. They think that is a death sentence and not what it really is, which is the best care he could have right now.

They explained they will discharge him off the floor and are sending him to a “rehab” unit. This is the same place my MIL went to when she broke her hip. The unit is actually a transitional unit and he will probably be admitted to palliative care. MY SIL thinks they are going to get him up and walking around. She said she is going to look for a smaller apartment for him when he comes out in two weeks so he won’t have to worry. She is not dealing with the inevitable and unfortunately she has the power of attorney and health proxy. My BIL was appalled that FIL signed a DNR. I hope they adhere to his wishes which are basically, “take care of your mother and let me go. I am tired.”

I went through absolute hell with my own parents. My Mom died when I was 23 and I was responsible for my father for the next 13 years. My siblings abdicated any responsibility for either except my oldest brother who did all the funeral arrangements and was supportive. It splintered the family and firmed up my resolve to not have anything to do with most of them. A couple of times that they have interjected themselves in my recent life caused only more hardship for my oldest brother and me.

Death is not pleasant for those who remain. That is who the entire funeral and other hoopla is for. The transition of dying is not necessarily horrid. It actually can be beautiful and loving. We all will face it in some factor or another. My husband and I have completed our advanced directives and wills. There is some peace in knowing that it is in place and we have a non-family (lawyer) who will oversee the process and guide my nephew and/or his daughter to do as we wished. I wish comfort for my in laws and I hope someone will supersede my BIL’s and SIL’s lack of reality and ignorance and get them the care they both need.