My mom, who has lived with me for six months, entered hospice very suddenly two weeks ago after years of weight loss, stasis ulcers, and more recently auto-immune blood problems and repeat blood transfusions. She was diagnosed as having colon cancer even though her tumors were recently biopsied and labeled benign because she is not a surgery candidate and the doctors said that her tumors likely are malignant or will become so. Her decline has been swift. She spent a weekend in the in-patient hospice facility and we were both thrown by how out of it she was on the increased pain medication. She wasn’t eating or drinking or using the bathroom, and she was having dreams and visions. I thought she was ready to pass, but then with slightly reduced pain medication, she rebounded and was cognizant, eating, even occasionally saying she was comfortable. Now, a week later, she was in excruciating pain that oxycodone and morphine at home could not control, and she has been re-admitted to the in-patient unit temporarily. I feel so jerked around by the experience. Caring for her at home since she entered hospice is a huge challenge because she can barely get up and is always in massive pain, but she won’t go to the bathroom in a pull-up, so I’ve been helping her to the bedside commode. But when she is in-patient, she is simply knocked out by the potency of the medication. I guess my question is: is this what hospice is? Should I expect her to just spend her remaining time completely passed out? And if you have experienced this, did you have any indication that the end was near? Today, I have prayed several times that she could simply go and be relieved of the pain, but even still, I wonder if it’s just a pain episode and she will be back home again soon (the in-patient facility is very quick to release). I’d love to hear other experiences. I know I can only take one day at a time, but I am a planner, and this experience is making me feel insane.
Stay close to your family and tell her you love her every moment you can. I’ve gone back and forth as to whether or not I believe it to be a blessing to be there with a loved one as they go through the dying process or whether it’s torture. I suppose it’s both. Say what you want to say now. I promise you won’t regret it. Hugs.
I send my clients this booklet to help prepare them for what they may experience.
( You wrote: "but then with slightly reduced pain medication, she rebounded and was cognizant, eating, even occasionally saying she was comfortable. Now, a week later, she was in excruciating pain that oxycodone and morphine at home could not control," )
Jessully:
The problem with oxycodone and morphine is there are painful withdrawal symptoms once the potent dosage is reduced.
It's often difficult then at that point to separate the pain of disease from the pain of drug withdrawal.
Please read Sunshinelife's post again and then read it over again. It is an excellent post.
There are natural alternatives to pain meds. They do not have the nasty side effects. Just have a nutritionist or wholistic doctor ensure there are no contraindications to any meds she must take, when the meds are reviewed
As for the post from Sunshinelife, the only thing I can attest to is to beware of potassium levels. Dehydration can lead to low levels, which can cause befuddlement and confusion. In mom's case, she was drinking too MANY fluids, which washes out electrolytes, which lead to potassium levels being too low (think also vomiting and diarrhea - leads to the same issues.) After getting rehydrated/replacement of lost electrolytes in the hospital, especially the potassium, she was back to her grumpy old nasty self!
i am a medical resident & understand natural medicine reasonably well
i have a Grandpa i love very much who is a difficult person. . I am doing my best to take care of him
He has been doing much better lately, after applying/eating/doing some of the items i will list on the bottom of this tome..message:)
And i have been working in a cancer unit so have some understanding of what you are experiencing
Have them run IRON & B12 BLOOD TESTS..insist.
Its very very common in the elderly.
And you her symptoms you mentioned fit the anemia picture.
And give her a bowl of stewed prunes at night to get that bowel moving...or request the staff.
Wish I was closer to be of more assistance:)
However, "Knowledge IS Power".
I will leave you some information you will find of help:
a. Colon Cancer. You didn't specify what 'tumors' where found. However, most colorectal polyps do not become cancerous.Although colon & rectal cancers often start from polyps, the process is a very slow one. And polyps are removed during colonoscopies. Therefore making an offhanded 'oh she'll get cancer 'statement is arrogant at best..
We all must die...its the suffering we want to minimize or even better avoid
b. Side Effects
"For every beneficial central effect, they are Always side effects' for every medication a person is taking.
Every medication uses particular nutrients in the body
often medications are taken together that should not be. Do ask your pharmacist to check the list of meds your Mother is taking & make sure none are contraindicated. (i.e. should not be taken together)
With all due respect, I suggest that most (if not almost all) of her suffering is due to the medications she is being prescribed.
Toxic psychosis (Narcotics are the #1 Offender in this category)
you mentioned your Mother is taking multiple meds. The reaction of the body to these toxins in the body is known as toxic psychosis
There is a long list of meds that cause these 'psychotic like ' behaviors.
They differ from mental illness in that once the meds are stopped the problems stop
Im not suggesting you stop any medications...just that you are aware of the cause of problems..And ensure that you Mother is taking the abserlout minimum doses of any meds
a psychosis...confusion, irrational thoughts & behavior, aggression, hallucinations
C. Dehydration
The majority of people in care are dehydrated. Even though most patients have an iv line that provides fluids...i would suggest that you take a bottle of Distilled water with you at every visit and make sure your Mother drinks as much as possible
C1. Google Dr Bernard Jensen Potassium Broth. Its very simple to make & take
some for your Mother...& drink plenty yourself. Its very rich in mineral..potassium in particular that is in short supply & difficult to absorb when we are sick I have seen even the sickest patients get color back & the heaviness lift from them after a cup of this simple broth that costs pennies
I add "Goats Whey Powder" 2Tblps per cup (NOT cows, goats..Mt Capra is a good brand..Avail on Amazon
The fluids mentioned are Essential! The body is 98% water...if the water is not right..the body won't be. And the symptoms of dehydration are the Same as the symptoms of dementia...For most physicians...very difficult to tell the difference!!
My Grandfather was on 4 or 5 meds
Over a period of a year we slowly but surely replaced them with natural herbs etc
It has been a long & very difficult time. However, he now is pain free most days & nights. I am listing below the things we gave him for pain, & to increase his strength & wellbeing. He's 83 years old this year. We used to call Kaiser "his second home". Now he goes rarely.
Im sure your Mother can be much more comfortable & not pass over in state of calm if you are willing to keep learning & apply the knowledge to her and to yourself
Take care of yourself. You an important person in the scheme of Life :)
For Pain
Internally
Tumeric P
I did the same for my Grandfather. He lived comfortably into his late 90s and lived four more years after being removed from hospice, where he was given a few weeks to live, using similar methods.
I have been advocating natural alternatives to 'script pain meds for quite a while here. As well as checking all medications and keeping only those absolutely necessary.
Thank you for your excellent well-informed input.
We had my FIL in our home on Hospice care for the final 9 weeks of his life, and also the prior 13 years as well, but during the Hospice time, to see the steady yet gradual decline was so very sad. He was bedbound the entire time, he had Lung Cancer and was so frail and weak from the prior Pneumonia, that even together, my husband and I could not lift him.
Our Hospice Team was wonderful, provided everything we needed, and we took advantage of all that they could offer us, including liquid nutrition shakes, musical therapy, bath aides, Chaplain services, massage therapy, his pain meds and of course all of the medical suppkies and equipment too.
Our 4 kids, spouses and Grandies were here frequently to see him, as well as my 3 sisters, and that was about as much physical interaction as he could manage. His other 2 kids failed to even visit, call or even send a card, so that part was very disappointing, but nothing less than I had expected of them, such selfish people.
The roughest part was trying to distinguish what was actual pain, or what was bothering him, as he was a poor communicator. In the end his agitation was what bothered him (and us) the most, as he did not understand just what was happening to him, so finding the exact combination of medication that Worked best was trial and error.
On his final day, I was quite unprepared, as I did not think the end was as imminent as it was. He developed a sudden and very high fever that morning, and while I was on the phone to Hospice, in that minute I stepped out of the room, he passed away. I kept hospice on the phone with me as I pronounced him dead, I was so scared!
Our Nurse arrived shortly, and took care of all of the necessary arrangements, and then he was gone from our lives, after so many years of him a part of our household, the transition felt unreal for several days.
It is strange that all of our stories are so different, yet so simular.
We have now lost all 4 of our parents and now We are the Elders, and that is kind of strange to wrap our heads around as well! All 4 of our parents had difficult end of Life journeys, but I am glad to say that I did my best to help them all, til the end.
God Bless all Caregivers!
May sweet memories of your mother bring you peace.
Mom was diagnosed with heart and Dementia about a year. She was 94 and a half. I was her primary caregiver Hospice was limited, visiting nurse every two weeks to check her vital signs. A home care helped in a bath/ mostly bed bath Three times per week I did her baths the other days. I managed her meds at all times refills came from her Doctor and Pharmacy. Pain management was some morphine and an anxiety medication. Mom was in continent so no need to take her to the bathroom, I changed her diapers frequently, turned her to prevent bed sores.
I learned to be kind and patient with her. She sometimes was in a different place. Talked about her past and she sometimes did not recognize me. I went along with whatever that day had to offer.
She was comfortable. Four days prior to transitioning I observed a change and it was really quick.
the day before her breathing was different than any other time put her on oxygen ( we had at home) called Hospice that night to check Mom. The Nurse Checked her vitals and her oxygen level was not normal kept her on oxygen.
I observed the Nurse’s demeanor. I never left her side from the Sunday night until she passed. Which was very peaceful. Thank God.
It was a gratifying experience for me to have cared for My Mother,and was fortunate to have had the opportunity to hug her many times and told her how much I loved her. Although she could not talk she squeezed my hand and puckered her lips.
I truly loved her.
My mother has a chronic infection in her hip that they cannot get rid of due to cirrhosis of the liver and other issues. Her pain has been off the charts for over a year and hospice is at the point they cannot due anything else. She is on 100mc Fentanyl and 10mg OxyContin and these are not doing anything. A few weeks ago, they tried adding methadone to help with her bone-on- bone arthritis pain, but that knocked her for a loop and we had to stop it. This week, they tried morphine, but Mom said it did not do anything and it knocked her for a loop again. After both of these attempts, her pain seemed to get worse.
She will eat small meals and drink some water, but is extremely confused, even more so than a month ago. She also can barely get up to the toilet. She sleeps constantly unless someone is there to wake her.
Like you, I pray daily that her pain will be taken away. I don’t want to lose her, but it is horrible to know the pain she is in and know she knows there is no help for it.
Please know now that your mother is still with you. I have seen evidence of this since my father died years ago. She is now out of pain and in peace. My thoughts and prayers are with you. Thank you, also, for your post.
You need to release your Mother - tell her gently that you understand her time is coming and it is ok that she will have to leave you. Praying is good, but telling her that it's ok to leave is better. If your Mother gets better, that's ok too.
I had to release my DH because he didn't want to leave me - but he wasn't living anymore. Towards the end, they will refuse food and only sip at liquids. They can hold your hand but have trouble speaking to you. They can still hear. Hospice has a book that tells some of what you can expect at the end. Ask about it. It helps to understand. Your mother will slip into a coma at the end but that can last 24 hours - I believe the time varies. Some people equate that with the person "lingering" for not wanting to leave you.
Suzanne
I hope this helps. Those last few days were very difficult to watch him transition.
My brother had bone cancer and was in a Hospice Facility for the last 2 weeks. He ate well every day and was very talkative, We worked on his computer together and got all the passwords, bills, etc. taken care of thank goodness. About 3 days before he died, he started having trouble breathing (oxygen) and was be given pain medicine and morphine on a regular basis. But he never lost touch with reality. The last day I was called about an hour before he passed and told that he had suddenly taken a turn for the worse. It happened really quickly.
Being with both of them the last few days made me realize how different it is for everyone. I kept waiting for him to stop eating and sleep more. It never happened.
I am thankful for Hospice nurses and doctors who were so good to take care of both of them since I was not there.
I don't have a lot of experience with hospice but in my one experience no one could tell us when it would end. One family member stopped eating completely and took very little fluid (no Ensure. Just flavored water) and was alive for months. The night before she passed away, the hospice nurse said she saw no signs of impending death. So I think this is just something you can't plan. I'm sorry. It's really hard.
Is it possible to get your mom admitted to a Nursing Home so she has round the clock medical care?