Coping with a Loved One’s Diagnosis
A few months ago I wrote a blog on how to cope when caring for aging parents; little did I know then that this was just the beginning of a new set of challenges. Last month my mother-in-law called me on a Tuesday morning complaining of a mass in her abdomen. She was not experiencing any pain, discomfort or any other symptoms, but as a former Registered Nurse, this was something we could not ignore.
We made an appointment with her health care provider for later that day. The doctor diagnosed her with a benign hernia which did not require immediate attention. Since we had an appointment with him for a check-up later that week, he so graciously decided to take care of everything that day. Everything checked out well on the physical exam and off we went to have her lab work done.
On Friday morning, I received a call from my mother-in-law stating that her doctor insisted that we get in with her hepatologist, a liver specialist, that day since her liver enzymes were higher than they had been. With a history of autoimmune hepatitis, we were not too alarmed. Her hepatologist ordered a series of blood tests as well as an abdominal sonogram and an MRI.
Two weeks after the initial doctor visit and only three days before Christmas, we were given the news that my mother-in-law had Hepatocellular Carcinoma (HCC) also known as liver cancer and we have been on a whirlwind since. We visited the oncologist just 3 days after New Year’s and were given the sad news that there was little that could be done. The doctor was so wonderful and suggested that we contact the Hospice agency their office works with.
Later that day, after many, many tears, I made the dreaded phone call to the Hospice agency. I spoke with the liaison who so kindly and helpfully guided us through the process. Never in my wildest dreams would I have ever thought I would be dealing with this issue. We met with the liaison, Registered Nurse and Social Worker within 72 hours of diagnosis. Each member of the team told us their job and what we could expect. Let me tell you, it was by far one of the most difficult days of my life, but there was a comfort factor having these compassionate and caring individuals on our side to help my mother-in-law.
As the days pass, my mother-in-law grows weaker and more fatigued. She is becoming more jaundiced as well as experiencing the ascites, or fluid build-up in the abdominal cavity. She is still able to eat and drink, but for how long that remains to be seen.
Two weeks ago I was able to take her back to her hometown to see her friends of many, many years. It was bittersweet to see over 30 wonderful people celebrate her life with us, knowing that we are fighting against how much time we have with her.
Words can’t begin to express the gratitude I have for all of your thoughts and prayers. Trust me, having so many people to support me every step of the way makes this journey a tad easier. THANK YOU!
Have you ever had to cope with a loved one’s diagnosis? How did you manage through the stress? Do you have any words to offer on how to get through the days and weeks ahead?
We made an appointment with her health care provider for later that day. The doctor diagnosed her with a benign hernia which did not require immediate attention. Since we had an appointment with him for a check-up later that week, he so graciously decided to take care of everything that day. Everything checked out well on the physical exam and off we went to have her lab work done.
On Friday morning, I received a call from my mother-in-law stating that her doctor insisted that we get in with her hepatologist, a liver specialist, that day since her liver enzymes were higher than they had been. With a history of autoimmune hepatitis, we were not too alarmed. Her hepatologist ordered a series of blood tests as well as an abdominal sonogram and an MRI.
Two weeks after the initial doctor visit and only three days before Christmas, we were given the news that my mother-in-law had Hepatocellular Carcinoma (HCC) also known as liver cancer and we have been on a whirlwind since. We visited the oncologist just 3 days after New Year’s and were given the sad news that there was little that could be done. The doctor was so wonderful and suggested that we contact the Hospice agency their office works with.
Later that day, after many, many tears, I made the dreaded phone call to the Hospice agency. I spoke with the liaison who so kindly and helpfully guided us through the process. Never in my wildest dreams would I have ever thought I would be dealing with this issue. We met with the liaison, Registered Nurse and Social Worker within 72 hours of diagnosis. Each member of the team told us their job and what we could expect. Let me tell you, it was by far one of the most difficult days of my life, but there was a comfort factor having these compassionate and caring individuals on our side to help my mother-in-law.
As the days pass, my mother-in-law grows weaker and more fatigued. She is becoming more jaundiced as well as experiencing the ascites, or fluid build-up in the abdominal cavity. She is still able to eat and drink, but for how long that remains to be seen.
Two weeks ago I was able to take her back to her hometown to see her friends of many, many years. It was bittersweet to see over 30 wonderful people celebrate her life with us, knowing that we are fighting against how much time we have with her.
Words can’t begin to express the gratitude I have for all of your thoughts and prayers. Trust me, having so many people to support me every step of the way makes this journey a tad easier. THANK YOU!
Have you ever had to cope with a loved one’s diagnosis? How did you manage through the stress? Do you have any words to offer on how to get through the days and weeks ahead?
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Comments
be the angel you are. - 2/15/2012 1:05:59 AM
The average stay in a hospice is 24 days, so people need to realize that once they go there it doesn't last long. - 3/7/2010 7:02:38 PM
While MDM was on Hospice (for 1 1/2 years!), she adopted my "Life is full of adventures; you just don't get to pick all of them!" approach. She was a former golfer, so she was familiar with "playing it as it lays." Each day, she would give thanks for a new day, and ask in prayer, "What would You have me do today?"
Hospice is such a wonderful program, words can hardly describe just how much it helps the patient and the family.
All in all, none of us will live forever. "It's going to be something." So if we live each day as if it were our last, show those we love the love and respect they deserve, and do what we can, that's as good as it gets. It's a good time for people to realize that's it's time to "stop the stupid stuff" because nobody has the time or energy for it.
I wish you, your MIL, and the rest of your family strength in these difficult days. My thoughts and prayers are with you. - 2/4/2010 7:21:33 AM
My heart is with you and I wish the entire family the best. Please enjoy the time that you have with your mother-in-law. - 2/1/2010 2:51:47 PM
Talk with the hospice and get as much help as you can and need as it can get really rough. Also make sure that you are taking care of yourself.
Thiry - 2/1/2010 2:33:15 AM
There is no easy path through any of this. You enjoy your loved ones while you have them, you deal with the difficult stuff day by day, or hour by hour if you have to. I took long walks (it was spring when my mother was dying) to clear my mind - find someone to spell you on care, even if it's just for an hour or two, because you *have* to get away for a bit. Be easy on yourself - think of how you'd want a caregiver to be treated, then be at least that kind to yourself. You can help no one if you don't take decent care of yourself - and that includes getting enough rest, putting your feet up at odd times during the day (the dust can wait), eating a healthy diet.
All those people who ask if there's anything they can do to help? Tell them yes - then tell them exactly what you want. Most people truly do mean well, but they don't know what to do, or say, and they don't want to "intrude." Tell them you'd love a casserole, a library book, or for them to sit with the sick person for a little while. Maybe they could run the vacuum for you while you take your mil to the doctor, or just for a ride in the car to see the world. Give them a list and some money and send them to the grocery. I made the mistake of assuming people knew what would be helpful - they don't, you have to spell it out for them.
The hospice people are wonderful - talk to them, ask them anything, as they've been through it all many times and they genuinely care about the living and the dying, but (at least the ones I know) are not sentimental, and they'll tell you the truth as they know it which is often more than the doctors can or will do.
If you know how to knit or crochet (or are willing to learn), that sort of thing comes in handy when you get to the stage when all you can do for the dying is sit with them. I treasure the shawl I made when my mother was dying.
If your mil starts talking about "seeing" other people that she's known who have already passed, don't correct her or insist that she's dreaming - even if you don't believe in this sort of thing, her delusions (if indeed that's what they are) do no harm. Listen to her, be prepared to just sit and be with her, even when she isn't responsive. You may well not be with your loved one when she passes - one hospice person told me that the dying person almost always chooses a moment when she's alone to pass.
After she passes, don't feel guilty for anything at all, or allow anyone to criticize how you handled any part of this. No one is perfect; you will have done the best you could and it'll be water under the bridge then anyway. Also, don't let anyone tell you how to grieve, or for how long. It's an individual thing - my mother left my father's hat on the coat rack for almost a year, even though all his other belongings had been dealt with almost immediately. If you feel like you need help, because you aren't coping "well", don't hesitate to seek it and absolutely don't feel somehow "weak" if you do. Every person is different, and even for the same person, every death is different.
One important thing to be sure of: many people who are terminally ill do not want to be resuscitated if they start to die. Having a DNR (Do Not Resuscitate) directive is important, but be sure you check with the hospice people, too - they'll probably tell you to call *them* as the end nears, rather than 911, because the EMTs will try to resuscitate her regardless of your instructions or any piece of paper you might have.
While your mother in law is still able, take care of details. Know where the will is, where the safe deposit key is, where the life insurance policy (if she has one) is. Know the funeral parlor's phone number and who's to handle the probate. Make sure you know how your mil wants her body to be handled - cremation, burial, whatever - and be sure the finances are in place to follow her wishes. If there are items to be parceled out to relatives, *get in writing* your mil's wishes so there are no arguments later on. Go through photo albums and label the people, because too many times we assume we know who all those folks are, then discover we don't when it's too late to find out. If there are family heirlooms, get their stories and histories and write them down. Do a quick rundown of all the relatives she has known that you may not have - your husband's grandparents, for example - and get any details or stories - where they came from, when, the names of far-flung relatives. You or someone else may develop an interest in genealogy, and it's *so* much easier to ask now than try to find out later. It's often fun, too, to listen to the stories.
You will get through this period in your life. And later, after the earth has taken a couple of whirls, it *will* get easier. You can't feel that happening in the beginning - the pain feels too fresh and jagged to ever get better - but you have to trust the process and believe, and at some point down the road you'll notice that you do feel a little better. Be easy on yourself, learn what you can from the experience and realize what a huge difference you are making for your mother-in-law - it's an invaluable gift to give of yourself as you are doing.
God bless you.
- 1/31/2010 9:01:09 PM
It is more important now than ever to realize the power of Now... This moment is all that any of us have... I know you are wringing every instant out of the 60 seconds that we each receive in every moment.
Hugs,
Tracey - 1/31/2010 9:41:56 AM
My thoughts are with you and your family. My grandmother was diagnosed with pancreatic cancer on a saturday, she passed three days later. There wasn't much time for me to prepare. I still miss her dearly. - 1/31/2010 7:04:08 AM
I knew a little of what was going on, and you have my sympathy. As you probably know, my mother-in-law has also been in hospice care since September, and she has dementia. When my husband visits her, rare these days because of his new job, he never knows whether she will recognize him. Last time she did, the time before she didn't. I also lost my father to prostrate cancer many years ago. He received his diagnosis when I was in graduate school and I got behind in some of my classes. Those were hard times. He enjoyed a two-year remission, but when that ended, he went down hill steadily over a 15-month period. I thought I was prepared for the shock, but each time I visited him, I had a hard time controlling my emotions when I saw how much he had deteriorated since my prior visit. Pain control was a serious issue because he resisted taking prescription painkillers until he was close to the end. He said he was worried about becoming a drug addict. Sometimes I had to stay away, because it made him proud to know that I was doing well in grad school, and if we had gathered around him, he would have become convinced that we were there because he was dying. The way we react to such losses is, in part, a function of our psychological strengths and weaknesses. Though we may try to deny it, I think it tends to exacerbate our vulnerabilities, and it can put a serious strain on our most important relationships. Perhaps it is easier when you are surrounded by family and friends, but I was not yet settled at that time in my life, and at times, I felt very alone. I was not responsible for his care, nor am I responsible for my mother-in-law's care, so I did not face some of the issues you are facing. You are definitely in a tough spot, and I am sorry that you and your family are going through this. I will pray for your strength, and that of your family in coping with the illness and the impending loss. As always, lots of hugs, Janet - 1/30/2010 10:29:37 AM
My prayers are with you and your family. I was the prime caretaker for my mother for her last 3-4 years, and lived with her (I am single & low income) for 20+ years. My greatest help came from my church. Loving friends came over frequently to visit.
She never did go on hospice, because her doctor didn't think highly of hospice at that time and would not consider allowing it. I wish I had over-ruled him, because it was when we were alone at night that she would try to walk to the bathroom and fall, leaving only me to get her picked up. Part of my current disability is a result of injuries I sustained helping her. I would not change the time I was able to spend with her for anything.
Changes I would have made are: 1. Hospice 2. Tape recorder AND video recording used to preserve her memories. Use video as long as your mil feels comfortable with her appearance-she won't want to be remembered by her appearance when the disease really ravages her. Keep the tape recorder handy. Start it when she reminisces about her life, and when family or friends come to visit. You will forget too much of her stories after she is gone, and her memories in her words will keep her memory alive. Your children & grandchildren who are too young now or not born yet will learn to love her and know her.
My mom was getting a breathing treatment when the technician accidentally splashed water over her face. She said, "hey, I've already been baptized!!"
We collapsed in laughter, made funnier because my religion practices baptism by immersion of the entire body in water. I did write this episode in my journal, but so many of those precious memories have been forgotten or truncated due to not having them recorded.
Besides hospice, church, and support groups, you might be able to get some support from your local Independent Living Center. Google "independent living in your state or community" to locate the nearest office. In my state, there are 6 ILCs which are located in the larger cities of their geographic regions. Because the IL philosophy is that people will thrive better in their own homes, they provide support for nursing home diversion. This might be equipment loans. It will definitely add another caring individual to your support team. (I am a VISTA volunteer at my ILC)
God be with you and bless you. - 1/30/2010 9:57:42 AM
I always beg to ask the question: Is it better to lose someone quickly and painlessly or go slower and have more time with them? As you know there is no right or wrong answer.
Love your MIL as long as you have her and remember the good time.
BIG HUGS from Ohio! - 1/29/2010 8:06:29 PM
If had one word of wisdom it is to live one day at a time.
Tomorrow is not promised - 1/29/2010 5:02:27 PM
love ya
bobby & anne - 1/29/2010 3:38:09 PM
May your family find strength to help your mother-in-law and help hold you all together. And may your mother-in-law find strength as she is going through this horrible time in her life.
I am sending prayers your way for her and your family.
- 1/29/2010 2:52:57 PM
My grandfather had liver cancer. I did not have to deal the arrangements myself, but I do know that hospice was a Godsend. It's a great group of people and we're very grateful that we had them to help us. - 1/29/2010 1:56:56 PM
It was a very difficult time losing one and then less than a month, losing the other one.
My prayers are with you and your family Nancy! - 1/29/2010 12:17:49 PM
When I read about hospice coming and talking with you , I felt sad and relieved for you. Sad because, I can only imagine how hard that is for you. Relieved that there is hospice care. I remember staying home from school to take care of things when my mom had to go into town. I think it may have been easier on my mom to had people who were there to guide her through the worst ordeal of her life.
I am so glad you are there for her. I am sure she is greatful for the love you are showing her.
I will pray for you.
- 1/29/2010 8:49:21 AM
When I read about hospice coming and talking with you , I felt sad and relieved for you. Sad because, I can only imagine how hard that is for you. Relieved that there is hospice care. I remember staying home from school to take care of things when my mom had to go into town. I think it may have been easier on my mom to had people who were there to guide her through the worst ordeal of her life.
I am so glad you are there for her. I am sure she is greatful for the love you are showing her.
I will pray for you.
- 1/29/2010 8:44:48 AM
- 1/29/2010 2:59:47 AM
The other thing to remember is that you will be loosing your mil but she will be loosing everyone.
If you are doing Hospice at home, (we did) it will be an eye opening experience. They brought a hospital bed at 3:00 a.m., brought us food and held our hands when we needed it. I can't say enough good things about them.
Let your friends help. It is amazing how much toliet paper you can go through in one week with all the visitors so someone needs to make the grocery run.
I never thought that I would ever leave my house without my hair and makeup being done. HA. I would run down to the UDF to get a peanut butter malt because my dad was hungry at midnight and I didn't care what I looked like. The girl working there finally asked why all the malts and I told her that was the only thing my father could eat, she told me they were on the house.
I think the last thing to do is plan a funeral before you can consider yourself an adult. OMG the things I learned in one week.
In the words of a friend; "There is nothing a person can say to you that will make you feel better. The whole thing just sucks." And it does.
- 1/28/2010 11:18:04 PM
I will be praying for you and your family. - 1/28/2010 11:17:53 PM
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