Palliative Care and Hospice Care

Hi @irvkay312, I woke up thinking about you this morning. Have you chosen a room at the Care Center? When do you move?
Also, I'm curious -- when you transfer to the Care Center, you will still be under the care of your hospice team, but with the additional support of the Care Center's trained staff. Is that correct?

I'd love to hear how things are once you've settled in.

@irvkay312 Yes, you have been on my mind as well. Teresa

Hi Colleen, Dawn, Hopeful and others, I've been in the Care Center now almost a week and will hopefully be getting a room on 3rd. floor when an opening occurs. I haven't been as active, since my energy has gone down, with weight and longer span to think; likely from brain tubers. Rest has increased and a number of others have as well--as my Hospice worker yesterday has been explaining "that many of these changes aren't out of the norm during the process of dying." That too, is another reason I sought to acquaint people with, or about these things between Palliative Care--Hospice Care. Understanding my seizure conditions I've had 77+ years has also helped me learn about psychoneurological changes that may take place aside from my cancer. Something else, I spoke with Hospice Nurse and man handling adult care, etc., who said "since you've used a computer as a part of your daily routine; we would suggest you get a laptop, so as to continue its use, games, communication, etc. that will help you." So having less energy to make it to this computer, I can use a laptop in my room, or lobby across from it. Adjustments to daily changes is something else that will require time and patience amidst some irritability which also takes place during these times.

irvkay312

@irvkay312 I appreciate your continuing to share your journey with us! Blessings and best wishes, my friend. Teresa

@irvkay312 Sending you a virtual BIG Hug!!

Yes, I've been in room 266 East since last Friday and working with Hospice<br>team until a move to 3rd. floor is possible. Fortunately,<br> I'm teaching many aides and some nurses about tuberous sclerosis, which is<br>rare and urging members of Mayo Connect to learn about chemo adverse<br>affects and interactions that can happen after its administration. My<br>primary problem was Stage 3 Chronic Kidney Disease from Adriamyacin and<br>Streptozocin chemo. From that after diet went down, weight went down, and<br>other elements were lost on a regular basis including irritability, etc.<br>Learning these stages of Hospice also helps a lot.<br><br>irvkay312<br>

Hello all. I am just joining this discussion. My wife just died July 7th after a 14+ year battle with brain cancer. We had been married for 41 years, Two years ago she was given a prognosis, which gave her the option of hospice care. She chose home hospice. While she was told she might have under six months, she lived for just over two years from that time. She made many choices during the course of her illness and she was never sad nor second-guessed her choice of home hospice. The hospice care she received was excellent and they continued to work closely with her neuro-oncologist at Mayo, which was a real blessing. Glad to be here, although I admit I am still quite raw from the loss of my wife.

I truly feel that since I moved from the room next door where the man used a lot of profanity during sleep was one of my best moves. Secondly, after I saw that one of my anti seizure medicines jumped up 7+ points with no dosage change in over three months, something had to be done and it took my initiative to do it. First, I cut 200 mg. of anti seizure medicine withHospice nurses approval. No problems in over 3 days. Next, and only with the knowledge of my medicine body relationship over my life I cut 500 mg. of another medicine. Things continue to work fine. Possibly putting the matter together makes more sense now than it previosuly did. (1) in Hospice less pressure and stress, (2) more serenity, (3) eating less due to cancer of pancreas, etc., (4) metabolism difference per 3rd. stage chronic kidney disease=slower medicine exit from body and regular dosage built up levels in system, (5) age actually in slowing down entire system as is normal, was slowed down even more by pain medicadtions, so as to enjoy what I could to the fullest "quality of life."

It took my understanding and awareness of how the medicines I cut reacted to me during 77+ years. It also enabled me to impress upon some of the nursing staff the factors that some seizure types take stronger medicines, while others the patient can sometimes control triggers, stress, emotions, and therefore help themselves.

irvkay312

Regret your wifes passing, but I'm happy she made the home hospice decision and was happy with it. That is what we try to learn as we travel down this path of life. In cases like hers as well as mine with pancreatic cancer hospice, I am most relaxed, less worried, less full of stress and enjoying what is left with those whom I reside and participate.

Best wishes to you in your journey from here onward and willingness to help others.

irvkay312

Your loss is so fresh Scott. Thank you for joining us here. I hope that we can offer support that you needed then and now.