Mom's story

[TexasDaughter]

My 78 year old mom began having abdominal/back pain late last summer. Her PCP ran lots of tests and couldn't determine cause. She was in the hospital for 10 days last fall. She became unable to eat and lost more than 20 pounds...significant since she was already thin. They found out of whack sodium and potassium levels and an impaction. Refused to give her pain meds because they said it would make impaction worse and told us there was no cancer anywhere. More tests, scopes and scans over the next two months but no dx. In December the pain was so bad we took her to a larger hospital emergency room. Within an hour they found the cause of her pain - a golf ball size tumor on her pancreas - inoperable because on location on a main artery. At the time she was so thankful to have a diagnosis and morphine. She spent a week in the hospital and got to come home for Christmas.

The PET scan in late Dec revealed our worst nightmare. The cancer had metastasized to her liver, lungs and possibly spine and kidneys. Her oncologist told us maybe 6 months to live. He recommended an aggressive chemo radiation treatment and Mom agreed, understanding her cancer was terminal. I moved in with Mom as her primary caretaker. We had a steady stream of visitors over several weekends as most of our extended family came to visit. It was a busy time for me.

Mom began both radiation and Gemzar chemotherapy in January and continued for 6 weeks. She became very fatigued and had some nausea and diarrhea but not as bad as we feared. Another round of chemo in March hit her harder and left her weak and the weightloss continued. It became a full time job to entice her to eat. I began supplementing her three daily meals with protein shakes and baby food. We spent one long night in ER when her temperature spiked to 102.7. She began an antibiotic for an unspecified infection.

Her March scan revealed that the radiation had significantly shrunk the tumor in the pancreas but the spots in her lungs were continuing to grow. Her oncologist recommended taking some time off and "enjoying" life. We made a few short trips to see family and enjoyed a long weekend at the beach. Mom began to eat again and gained weight. Life was temporarily good.

Her May scan revealed the spots in her lungs had tripled in size and number and the tumor on pancreas had grown some as well. The scan also revealed Mom had pneumonia and she began antibiotic treatment and the oncologist put off planned chemo treatments. In midMay she began having blood in her stool that quickly turned to lots of blood. I rushed her in to Dr and her Hemoglobin was already down to 8. She was given four units of blood during her weeklong stay at the hospital. They could not find the source of her bleeding but presumed it was a diverticular bleed and hoped it would stop on its own as she is too weak for surgery.

The bleeding did not stop but it slowed. Two weeks ago I took her in for scheduled Injectafer (iron) IV treatment. I was quite concerned about her shortness of breath/shallow breathing and increased confusion. I requested a CBC and her Hemoglobin was back down to 7! They administered treatment and sent us ho the hospital for two more units of blood.

Last week her Hemoglobin was a low but acceptable 10 and she received another iron treatment. She continues to have blood in her stool, and is severely fatigued but she still has a little pink in her cheeks so I hope her blood is doing ok. She has begun sleeping at least 20 hours a day and is "zoned out" even when awake. She does get up and moves to her recliner for most of the day and still comes to the table to eat although her appetite is quite diminished, even with the Megace. She has no interest in doing anything and my usually talkative mom rarely speaks. Her speech is somewhat slurred and she has severe confusion. Among other things, she often thinks I'm one of her sisters or one of my sisters and asks where I have gone. Yesterday she tried to use her bedside clock as a phone and got upset when the toilet wouldn't flush. She was turning the light switch instead of the toilet handle.

She had another scan on Monday and I'm awaiting the results to be published online. I'm afraid of how much the cancer has grown. I'm thankful that the morphine keeps her mostly out of pain although she did have to take extra this week for leg pain. I'm debating whether to take her in for a blood test today. She has a scheduled test and appt with oncologist on Monday.

I fear the end is near. The last few days she has asked me to call all her sisters, lifelong best friend and favorite granddaughter so she could talk with them a few minutes. I felt she was saying goodbye. My heart is breaking but we have known this was coming for some time. At this point , I'll try to keep her as comfortable as possible. She has decided she is too weak for more chemo. I have known this for some time and I believe that is why the oncologist keeps putting it off. I expect he may recommend hospice when we see him on Monday.

My sisters live here on the same property but are very busy and we don't see them much. My husband feels uncomfortable with my Mom's illness and in turn makes her uncomfortable so he doesn't stay here. I have online/phone support from my aunts but I feel quite alone here. I'm tired but try to keep putting one foot in front of the other. My sister recommended I find a support group but the nearest is 1.5 hours away and I can't leave my mom for half the day to attend. I found this group online and I'm hoping it will help me.

[Veema]

Hi and welcome. Sounds like you've been on a rollercoaster for the past several months...we are all familiar with that, unfortunately, that's the nature of pancreatic cancer.

It is tough being the sole carer, particularly towards the end...the patient becomes less able, often confused and very often (and understandably) grumpy and easily upset. You have your own feelings of loss to deal with, even whilst your loved one is still alive, you grieve for the life you had, the person they were and for the future when you know they are no longer going to be around...all this whilst still trying to provide the best care you can.

Over here we get help from district nursing teams, Macmillan, Marie Curie provide end of life care and many of our hospices have a hospice at home service, where nurses come into your home to care for the patient as they would if they were in the hospice.

Has your Mom expressed a preference about where she would like to die? Many people find hospices a peaceful and homely place to be for their final days...and that gives you the chance to be her daughter, not her carer.

Please post whatever you feel...if you've questions, ask...no doubt one of us will have the experience to answer...if not, the nurses read many of these posts and often reply too.

Much love

Vx

[stepuha]

Dear TexasDaughter,

I am afraid I don't have any experience with end of life care but I just wanted to welcome you and thank you for sharing your experience. It sounds like you are doing a wonderful job looking after your mother but you shouldn't be shy about asking for help. It is a lot to do everything on your own full time and very difficult mentally.

Sending you positive energy from France.

x stepuha

[Justamo]

Hello Tex.

My heart goes out to you. Obviously, you have done everything in your power to make your Mom comfortable and calm, and it does sound as though she is getting close to her final sleep.

I am so sorry that you are not getting support from your family, especially your husband. I am a lone carer too, and I do understand the strain that you are under. Sometimes you just get tired of carrying a huge burden all by yourself.

Thank goodness that you have found a whole family of people now who know what you are going through and who will offer unconditional support and understanding for as long as you need it. Some forum members will offer practical advice, our marvellous nurses on the help line have vast amounts of experience and knowledge of the latest treatments, and there is nearly always someone to help you whenever you need it. In turn, just by recounting your own experience, you will be helping someone else.

With love and prayers Tex,

Mo

[TexasDaughter]

Thank you for your kind words. It helps me to not feel so alone.

I took mom to the Drs office yesterday. They were shocked at her decline in just a week. They checked her oxygen level and it was ok. It took four sticks and two people to get blood in my mom's small veins and they barely got enough for a CBC. Hemoglobin was a little low at 9.7 but not near as low as recently and should not be causing these problems. They said she had delirium and we should call her PCP ( she has no confidence in her)or go to ER possibly. Mom wanted to come back home so we did.

I suspect she is beginning liver or kidney failure but it could be an electrolyte embalance or dehydration. She is drinking quite a bit but not urinating much. The scan results indicated that the spots in her lungs have grown and multiplied and there are many more aggressively growing tumors in her liver. The tumor in pancreas has actually shrunk a little. Her pelvis is filled with free fluid.

I had a hard time getting her comfortable and spent the afternoon moving her from chair to sofa and back, rearranging pillows, blankets, etc. she took her extra breakthrough morphine twice and argued with me about taking her other meds. She repeats phrases over and over. It is so hard to watch.

On Monday, we will ask to begin Hospice care as I cannot keep up this level of care by myself. Any suggestions greatly appreciated.

[Justamo]

Hello Tex.

I really don't have the experience to offer you helpful advice, but I am sure somebody on this forum will. I have noticed over the last few months that people don't post so much at weekends but I hope somebody who can help reads your post and comes up with suggestions for you.

I wouldn't expect her to be rational when she is this ill, no wonder she is asking the same questions over and over. Is there an emergency service run by your hospice ? Or do they have an advice line ? Not sure quite how things work over the Pond. As you say, you can't do this all by yourself, you must get some help and I'm sorry that you will have to wait until Monday for it.

So sorry for you Tex. Try to persuade Mom to take her breakthrough morphine to lessen the pain whenever she needs to. Her abdomen will be swollen and painful with all that fluid too.

Is she sleepy ? If the morphine makes her doze for a while try to rest yourself then too.

With love

Mo

[Veema]

Hi

The fluid on her abdomen will be causing much of her discomfort...over here they will drain it off, I don't know if that's an option for her. My husband was very confused, it was found to be low sodium, but it could also be because the liver isn't working properly and the toxins are travelling around the blood stream.

The hospice will probably be a godsend to you...they will sort out her pain meds and will be much better placed to get her comfortable and you can just be with her then. I found, in the days just before my husband died that he was so utterly fed up, uncomfortable and generally grouchy and took a lot of it out on me...I totally understand this, but if he'd been in the hospice, I don't think I'd have bourne the brunt of his frustrations and I might have felt better about it all in that case.

Much love...stay strong, and accept any help offered...based on my own experience, doesn't sound like it will be long now.

Vx

[PCUK Nurse Dianne]

Dear Texas Daughter,

I am sorry to hear your story of Mum and also all that you are coping with at present, and it does sound that you have been so supportive and managing Mum as best you can. I see you have already had some great support and suggestions from our wonderful forum family, many of them sadly sharing similar experiences to your own.

As you suggest some of Mum's current symptoms could be 'multifactorial', ie there may be an element of dehydration, electrolyte imbalances and as you have suggested this was an issue at the beginning, you are most likely aware this can cause difficulties. Very frequently sodium levels can make a huge difference in a patient's mental state, so that is both high and low sodium and these are usually difficult to correct from an 'at home' level if you understand.

Tex (hope you don't mind me abbreviating), there may be other reasons as you have suggested some already. Our liver is the organ for metabolizing waste products and of course medications, as you suggest this may be impairing Mum's current state. Also with any renal impairment this will slow excretion of wastes from the body. You mention Mum has free fluid in her pelvis, this is what we commonly know as ascites. As the ascites increases it may also impact on other organs ie compresses the lungs from below, so patients may develop shortness of breath. The ascites also has what we call a 'tamponading effect' in that it will compress other abdominal structures, this being the bowel, often patients will become more constipated, and of course may also impact the kidneys, thus poor urine output.

The hospice service is absolutely the best service you can access at this time. The priorities are to ensure Mum is comfortable, and also to ensure you are well supported in caring for Mum at this time too Tex. Stay in touch with us both on the forum and of course feel free to email the nurses if we can help you in any way at all.

Tex these are (and will be) difficult days for you. I am sure you appreciate this wonderful support of this forum and of course please do be in touch with our nursing team as you may need over the coming weeks. Thinking of you Tex and stay in touch with us all.

Kind regards,

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line: 0808 801 0707

Email: nurse@pancreaticcancer.org.uk

[TexasDaughter]

My mom's health went downhill fast. We saw the Dr on Monday, June 26 and she agreed to go into hospice. Before they arrived Tuesday afternoon, she passed away. It was a frightening 24 hours for me. I think mom likely had liver failure because her eyes turned very yellow. She died peacefully at home with three of her daughters and her best friend of 73 years at her side.

[Proud Wife]

I am very sorry to hear of your loss. It is very shocking who quickly this disease can take over. May your lovely mum rest in peace.

Please do not hesitate to come back on here if you need to talk to anyone who's been through the same.

Much love and strength xx

[Veema]

So sorry...but at least you can take comfort from the fact that she went peacefully and at home.

Lots of love

Vx

[PCUK Nurse Dianne]

Dear Tex,

I am so sorry to hear of Mum's rapid decline and passing. I am pleased that she had you all around her at this time and also that she passed peacefully in her own home. Please accept our sincerest condolences and thinking of you in the time ahead.

I know you will find the love and support of this forum family so supportive at this sad time.

with our sincerest sympathies,

Pancreatic Cancer UK nursing team.

[Dandygal76]

I am really sorry Tex. Your mum is out of pain now and you did the very best you could. We are here for you. Much love. xxx