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Hi Michael,
I am no help with advice on the treatment plan, but it does sound very positive that doctors deemed his surgery a success.
Reading your words about poring over this site and others and the fear that hits you every waking moment rings so true to me and many others here.
Know that you are not alone and that everyone here has gone through what you are experiencing.
Best of luck to your family.
Are you in Delaware by chance?
Jan
We went through this also. Ultimately, my dad stayed at home with the help of Hospice. We also hired in home certified nursing assistants to help with eating, bathing, toileting. They will also do light housekeeping and cooking. The cost on this was about $15- $20 per hour US and depending on whether it was nights, weekends, holidays. I suggest going through an agency. It may cost more, but at least if you have a no-show, the agency will get you someone else. You can negotiate the rates as your parents need more help. They will discount for 24/7 care.
Hospice furnished all the equipment needs (hospital bed, portable potty, bed pan, urinal, oxygen tanks–any and everything).
As your father loses mobility, it becomes increasingly more difficult. My dad was pretty mobile until the last week or two so thankfully, it wasn’t a long time, but it was the most difficult when he was transitioning to bedridden.
Good luck! I can’t say enough nice things about Hospice and the quality of their service. Please feel free to ask questions if you like. I am sort of in a hurry at the moment, but will be happy to answer anything.
Jan
My dad complained of this frequently. We never found a solution as it seemed more bothersome than truly painful for him. I would think low grade pain med, heating pad and massage would help. Good luck!
Hi Michelle,
My deepest sympathy on the loss of your father. Please make time to look after yourself.
Jan
My .02 short answer: find another doctor.
Your step dad is the customer and if no one feels confident in the doctor, then it would have a detrimental effect.
Best of luck.
For us, we would agree with him as much as was reasonably possible, tried to keep him calm. In retrospect, I guess we did more suggestive conversation than Q&A. For instance, “I heard the neighbors came by today” rather than “Who visited today?” If he became agitated from paranoia, we would reassure him that things were fine and try to re-direct him. Sadly, even near the end, my dad would say things and realize mid-sentence that it didn’t make sense. We just tried to act like we didn’t notice and move along.
(Sorry, tia, didn’t see you mentioned encephalopathy.)
Sharon, I can so sympathize with as my father was this way as well. We had all types of tests He had good days and bad days and some very paranoid days also.
Things to check:
– hydration
– ammonia
– potassium
– glucoseSometimes patients suffer from a condition is called hepatic encephalopathy and get days and nights mixed up.
I have since discovered that the following that I posted:
Alzheimer
Hey gals,
I think it is the logistical part of this that keeps us going during these days. For me, it has continued into looking after the administrative details for my mother (SS, pension, insurance, banking, probate, etc). Now that most of that is finished, I am starting to feel the letdown, the “did this really happen?” and “boy, I miss that ole man.”
Yes, Michelle, make sure you have the care package. As far as the anxiety, I am not sure what you have experienced, but things like reaching and rubbing fingers or fabric are all signs of anxiety, if those continue, they will adjust his medication. Don’t be afraid to ask hospice for anything at anytime.
Good luck!
Amy, did you get my email? You and I have a good deal in common, I think.
If there is a bright side to this, you seem to be over the physical hurdles. It is so challenging having a quasi-ambulatory patient at home. It seemed we stayed one step behind in getting CNA’s in to help, getting equipment (porta potty, wheelchair), etc. when Dad was still somewhat aware and mobile.
The other thing I did not mention and it was the most bothersome for me was his dementia. Dad was very confused for his last few months. We had everything tested and nothing came up. It is so hard because a man you have always known to be your strength and remember being vibrant, no longer exists.
My best advice is to catch him awake and say everything you want to say.
Please keep us posted.
Hi Michelle,
I am sorry to hear this, but I just went through it all about 5 weeks ago, so I know your feelings and wish no one ever had to do this. That said, it is a gift for you both to spend the final moments together even though you know what is coming. He knows you’re helping him, remember that.
Hospice is wonderful. Don’t be afraid to call them ANYTIME if something changes or doesn’t seem right about his comfort. I am sure your father is glad to be in familiar surroundings. I don’t know what you’re looking for as far as info. A few (brutally honest) things that I was unprepared for as this process unfolded:
-The intake stops and then voiding stops, the end is near. Or at least it was for my dad a matter of 2-3 days. Hospice will take care of it, but if your dad is eating, he should probably be on Senna or another laxative to avoid impaction.
-He will be unable to swallow meds. Hospice will discontinue any medications other than pain/agitation control, like morphine and atavan. They will give you a liquid of these to administer frequently (every 2 hours). These are absorbed through the mucosa under the tongue and the gums. The frequency will mean a family member awake and nearby 24/7 because one else (hired CNAs for example) can legally administer meds.
-Hospice should also provide a mouth moisturizer (toothpaste like) and some sponges on a stick (lollipop like). They should show you how to wet his mouth and then administer med. Even near the very end, my dad would suck on the sponge to get the water. The body’s instincts are amazing.
-Hospice will use the term transitioning (IIRC) to mean that he is nearing the end. They should tell you things to look for, specifically, his feet will get cold first and then calves, moving upward as circulation slows. When hands get cold or your don’t get a return of color when you press on his fingernails, it is almost over. He may get very high fever as his body no longer has the ability to regulate its temperature.
-You probably know this, but you should still talk to him. He can hear you . My father even opened his eyes and tried to speak the very moment before he passed.
-His breathing will probably rattle. As his breathing slows, you may think numerous times that he has drawn his last breath, but he will begin again. He may cough a lot as well.
-When he passes, you call Hospice, they declare, call the funeral director, and dispose of medication. They should also arrange for the pick up of any equipment. We had to push that along because as soon as it was over, we all wanted the hospital bed out of the house.
I am sorry if this crass, but these were the things that I hadn’t given thought. Your parents appreciate this so much more than they can ever say. Also remember that regardless of how he looks or how you may feel, Hospice will keep him comfortable and pain-free on his journey.
I’ll keep you in my prayers,
Jan
My dad had a needle biopsy in October and his cancer did not seem to spread from that. That one was inconclusive (malignant but not certain CC). He had a laprascopic (sp?) biopsy in March that showed no spread, but was still inconclusive.
My caution to anyone considering a lap biopsy is to take into account the patient’s age. Though minor, it is still considered a surgery and having that seemed to begin a decline for my dad. He had issues including dementia from the anesthesia, urinary catheter had to stay in a week. Having that is a decision I would like to have back
This guy was hiking around France a year ago. That sucks, cancer sucks, and CC is in class by itself.
Here’s his obit:
http://obits.nj.com/obituaries/starledger/obituary.aspx?n=john-patrick-ur&pid=134255299
RIP John
