New Diagnosis: Faith Hope and Love for Mom
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Jason,
So glad that things are looking some what improved and that you are now there to see this for yourself. I am so impressed with both you and your mom’s positive attitude and outlook. I also agree that hospice can be a positive experience for everyone.
I have one interesting thing to add although a bit off the CC topic. My mom had Parkinson’s and passed away last fall. Up until the week before she died she was still getting her hair done every week. I guess that is one thing that they can cling to as something normal and routine that they can continue to do. So good for your mom that she still does this.
Take care Jason and keep on updating us as you can.
Hugs,
DarlaDear Jason, please let Dad know that it does not mean end of life as you can also go off of it at any time. Patients feel so much better that I really have not heard of anyone going off. My husband was on home hospice for 3 months and I don’t know what we would have done without them. #1. IF a patient becomes uncomfortable and pain meds are not given or increased the pain will get out of control. #2. It somehow gives everyone a different perspective on things and allows families to enjoy and create good memories for what ever time they have. My husband and I talked a lot about his CC and we had no surprises, calmness and no regrets. #3, It is really up to the patient to make the final decision.
I had a hospital bed from Hospice and set it up in the living room, bright and airy with big TV. It was perfect for visitors, Teddy and me and gave the Nurses plenty of room as well. I had ordered the bed and a walker to begin with and then added a wheelchair and Oxygen later as Oxygen helped him breathe easier and helped relax his pain.
Honestly I wish all families could find the acceptance which in the end makes it more comfortable for the patients and really everyone. There comes a time in life where we have to trade places with our parents and I know it is not easy BUT it does work out well. We become the parent. Perhaps you could go out for lunch with Dad and tell him about our group and that you found us and ease in to the subject. I just feel that health decisions should not be left to those in denial. Be strong Jason, you are a great son and Grandson, I know you will get through this. You never know how strong you are until strong is your only choice.Jason…it is difficult to navigate the non-acceptance of all that hospice is able to offer. I am sure you will hear from many others on this site however; this link may be of additional help to you:
https://www.bkbooks.com/blog/what-do-you-say-get-someone-accept-hospice-services
Thinking of you and sending tons of love your way,
Hugs
MarionLany, Marion, Darla, Debbie, Catherine, Gavin, and Kris thank you all for your kind words. You don’t know how much it means at a time like this. Hopefully you all are enjoying a relaxing weekend, and living life to the fullest!
*** Update, Saturday, 20 June 2015 ***
I finally made it to my mom’s in Georgia. I’ve been in Texas for the past two weeks helping my grandparents (my mom’s parents). My grandmother is going through radiation for breast cancer. She had surgery a few days after my mom told me about the docs finding the mass on her liver. What are the odds of both your mother and grandmother both finding out they have cancer within a few weeks of each other?!
Mom looks great! Yes she is jaundiced. Yes she is weak. But her spirit is alive and well!
She wanted to get out of the house for a while today, and mustered up the energy to get her hair done! I was amazed by this uptick in energy. She has set into a routine by waking up around 7:30, enjoying the morning and day as much as possible, taking a nap around 2:00, and enjoying the afternoon and night until 9 or 10 or so. She is determined to live each day with as much quality and life as humanely possible. She is my hero! She is currently on 3 meds:
– one to possibly slow down the PSC
– one for nausea and to help prevent vomiting
– one to break down the bile and help prevent infectionShe is eating and maintaining fluids well. She does have an intermittent cough but the doc says that is ok as it will help her bring up whatever is in her lungs to help prevent respiratory issues.
The head onc on her Emory team gave her the info for a palliative care specialist here in the Augusta area. Unfortunately, here in this part of Georgia palliative care is combined with hospice. When most people hear hospice they automatically assume “care for end of life” as in imminent. This is how her husband views it. He does not want anything to do with that because of this negative stigma.
I am trying to navigate the waters to help them understand that hospice is not a negative, but a positive. They are there for both my mom and for all of us as caregivers. Any words of advice that any of you can give would be much appreciated.
Mom is fully aware that she cannot fall back into the place that she was in before going into the hospital a week and a half ago. She was sleeping 20+ hours a day, nauseous, and therefore did not eat or maintain fluids as she sould. We are trying to avoid a repeat of this. Unfortunately, I think the intial shock of the diagnosis had a huge effect on her mental state that caused her to spiral down for a bit. The more that I think of it I would have done the same thing. Like her, I tend to internalize everything, and take everything to heart. Who wouldn’t when you are told that you are fading?
Anyways, I just wanted to let all of you (that have taken the time out of your own daily life to invest your emotions and thoughts into my mom’s journey) know how she is doing. Thank you again for your words of encouragement, your suggestions and advice, and for being a shoulder to both listen and cry on.
Best,
Jason
Dear Jason –
So sorry you, your mom and your family have to go through this. It is a very rough disease on everyone involved as many of us on here can attest to. Having a good doctor that is willing to explain things is imperative.
As far as bed side manners I have to answer for that. As a nurse I see doctors in an even worse light because there are many that will treat their patients fairly well but then treat their nurses like crap. I will not see a doctor that treats anyone that way. It does not take that much to just put the smile on at be gracious. I do it all the time when dealing with patients.
As for palliative care, I can answer questions that you might have. I have been a home health and hospice nurse for years so feel free to ask away. As for the nausea without a doubt treat it like pain and stay ahead of is so taking the medications regularly is optimal. Often constipation can happen with taking nausea meds and with narcotics so it is good to have a plan for that just in case. I usually recommend a combination of stool softener and senokot but talk to your doc they may have others they prefer.
Glad that she is home from the hospital. Home is where we do that best.KrisV
Dear Jason.
I am so sorry your family is at this point, but I also admire your strength and unselfish attitude. And I know that having such a loving family has to be a comfort to your Mom.
I wish your Mom the quality and comfort moving forward. My thoughts and prayers are with you and your family.
Catherine
Dear Jason,
I am sorry to hear this today from you and having been there with my dad back in 2009 I so know how you feel and what you are going through right now. As the others have said to you, you have done everything that you possibly could for your mum and I am sorry that things have gotten to this point.
Your mums comfort is of the utmost concern and I so know that you and the rest of your family will do everything that you all can to keep your mum as comfortable as possible. Please cherish this precious time and know as well that we are all here for you.
Thinking of you and your mum right now.
Gavin
Dear Jason,
I am so sorry to read that there are it has come down to palliative care for your Mom. You have clearly done everything possible to search for treatment options. Unfortunately, for many, it comes down to where your Mom is at now. You are so right to focus on your Mom’s comfort and quality of life now, and ensuring that she is surrounded by love will hopefully bring her a sense of peace.
My prayers are with your family.
Debbie
Dear Jason,
I am so sorry to hear all of this, but your attitude and thoughts are right on. I love your positivity in the face of all this. You are so right to focus on your mom’s quality of life at this point, along with controlling any pain she may have now or in the future. You are definitely a beacon of light.
You are not being selfish. Good thoughts and prayers for your mom and also for you and the rest of your family.Know that you have lots of help and support to fall back on. We are here when you need us.
Update us as you can.
Love & Hugs,
DarlaJason…..my heart goes out to your Mom and your family. This is a time of extreme sorrow and yet the most precious time as well. It is love that will carry you through it. With time you and everyone else will focus on making each day the best it can be for your Mom.
After your Mom is settled in her home and her symptoms are under control you may want to discuss advanced healthcare directives. Perhaps it already has been done (we should all have it in place and not wait until illness strikes) advanced directives should be put in place. This will allow your Mom decide ahead of time how she wants to be treated. Advanced directives may include a living will and a durable power of attorney.
Please know that setting up an advance directive is not the same as giving up, but it can help everyone worry less about the future and live each day to the fullest.
A living will lets people know what kind of medical care patients want if they are unable to speak for themselves.
A durable power of attorney for health care names a person to make medical decisions for your Mom when she can’t make them herself. This person, chosen by her is called a health care proxy. It should be a person she trusts to carry out her decisions and preferences.
Regarding the possibility of you or your siblings developing PSC, you may want to reach out to a wonderful volunteer organization.
PSC Partners seeking a Cure : http://www.pscpartners.org/The precious time laying ahead of you will forever be embedded in your heart. Please know that we are with you, dear Jason, all the way.
Hugs and love,
MarionDear Jason, I am so sorry about the meeting today but I do feel it is best to know everything and glad you all know what to expect. Somehow I feel we are more frightened when we guess and don’t know for sure.
Your Mom will glow (right up to the end people said Teddy never looked sick) and you will all make new memories and I know and I believe that your Mom has the best team right in her family. You are all a good tribute to how you were raised.
You are and will be that beacon of light for your Mom. You never know how strong you are until strong is the only choice you have.
We are all here for you and please continue to keep us informed as you can. Prayers and good thought sailing out to you.Thank you both Iowagirl and Gavin for your words. They are appreciated.
*** Update, Wednesday, 17 June 2015 ***
Mom was released from the hospital this afternoon. The medical team came by and talked to mom this morning. I’m so glad her husband was there, and that my sister was able to spend the day with her.
The head of the medical team led the discussion. They said although the news was not good, he was very comforting, reassuring, answered all of their questions in depth, and had a great bedside manner. Why do some doctors get it and other doctors are simply clueless? Maybe empathy, compassion, and a proper bedside manner should be a topic not only for medical students, but a reoccurring toping for all physicians and medical staff throughout their careers.
What we know:
The Bad …
– Tumor is on the left lobe of the liver
– PSC has encompassed the right lobe and is what has caused the extreme inflammation of her
biliary tree.
– Today was the first day that ANYONE has mentioned PSC (primary sclerosing cholangitis)
– The PSC will eventually cause mom’s liver to shut down.
– He said this will likely be what causes her to pass, not the cancer.
– He explained PSC within the bile ducts with the analogy of a straw. Imagine being inside the
straw (like driving in a tunnel). You can go an inch then the path is blocked due to the PSC
constricting the bile duct. After that blockage, you can go another inch then another blockage.
This repeats throughout her whole biliary duct tree.
– This is the reason why the stents can’t be done. She is too weak and the external drainage
would be of no use to her.The Ugly Truth of it All …
– Mom will recieve palliative care. Not the news that any of us wanted, but I’ll say more about that
in a minute.
– The leading physician said that she has had PSC for years. Unfortunately this is a result of her
Ulcerative Colitis.
– Obviously he could not answer to why they did not find this 23 years ago when she had her
colon removed for the j pouch surgery. It very well could not have been there yet.
– More perplexing is why this was not seen 6 or 7 years ago when she has surgery to clean up
the adhesions (scar tissue) from the original j pouch surgery from years before.
– She has gone to her gastroenterologist as requested on a yearly if not 6 month basis every
year. Not once was anything said to her about PSC!Bottom line is … does it really do any good to be angry, upset, or distraught? It isn’t going to change where we are today. The leading doc today did say that she could have had a transplant if it had been caught years ago. He also said that transplants are not possible for patients who have CCA or any other cancer on the liver. I could be political, but I will take the higher road. My take is that if she was the queen of England, or the president that something else would have been done. Not trying to cause a mass controversy, so I’ll stop. As I said earlier, it doesn’t change where we are today.
The Good …
– Is there such a thing as any good at all?!
– For us there definitely is. Mom is still with us, and amazingly is able to smile through all of the
heartache and tears.– They talked at length with the doctor about the next step now that she is leaving the hospital.
– The doctor prescribed a pain medication, a nausua medication, and a new drug that might help slow down the progression of the PSC.
– To prevent mom from being in the same position she was last week before going into the hospital, it is imperative that she take her nausea medicine every day practically. Usually she’s always taken it when she feels nauseous. Wouldn’t we all do the same thing? He said for PSC and CCA it is too late when you already feel nauseous. So take it everyday, that way there is a better chance of preventing it all together. She must also eat to get nutrients and drink a lot of fluids everyday to prevent dehydration.
This leads to the only good in this entire PSC/CCA journey. Our hope is that with the right plan in place, her remaining time is full of quality and comfort. That she is able to glow and have not only a smile on the outside, but a true inner smile that lets us all know that she is in good hands. That she will have many quality days that are pain free, and full of happiness and joy.
– The doctor also made it a point to say that my sister, her kids, and myself will need to get yearly colonoscopies as there is evidence of a genetic predisposition to PSC. I actually had one a few years ago, but will definitely get another one and start with the yearly. Prevention will be best by taking as much of a proactive approach as possible. Does anyone know if they do preventative endoscopies? Or what the current research says about getting elective CT scans from time to time (regardless of whether you have to pay out of pocket or not) simply for the peace of mind and reassurance that this horrible disease will not affect anybody else within our family? Please let me know if you do.
***
Looks like I’m long winded as usual, so I will wrap it up. I will close with this. Thank you all for your continued positive thoughts and prayers for mom as words alone can’t tell you how awesome they make her feel. I do have a favor. If I could be selfish for a minute, would you please pray for me that for the remaining time that my mom has that I will be able to be a beacon of light. I don’t exactly know how to say this. I really don’t think there are any words, but I want to do everything within my power to help my mom make the transition to Heaven with ease, with love, and with dignity.
With much Faith, Hope, and Love for Mom, and a whole lot of positive thoughts for us all,
Jason
Jason,
I am real sorry to hear this latest news about your mum, not the news that anyone wants to hear. I so know and share your frustrations about all of this and so wish that I could help right now. I really hope that both you and your mum get some good news from Dr Chapman and please let us know how that goes.
We are all here for you.
Gavin
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