MY MOM

Nan,

HOSPICE IS NOT ABOUT DYING WITH CANCER….BUT WITH LIVING WITH CANCER!!!!

I made the arrangements long before ever broaching the subject with my Mom and Dad. In truth, I was so frightened for my Dad…the one without the cancer. He was terrified to leave her alone to even go to the grocery store and I lived 3 1/2 hours away.

Hospice was a godsend. When Mom was more unsteady on her feet they provided a shower chair. I was sure she would fall in the shower and take Daddy down with her. When it was determined oxygen would make her feel better thery brought it. She had a nurse that came three times a week to check her bloodwork and kept an eye on pain meds. They provided several really nice ladies that came and “visited” Mom for 2 or 3 hours. This gave Daddy time to go to the grocery store or the pharmacy or out to breakfast or lunch with some of his close friends. He could simply relax for an hour or so.

In a lot of ways Hospice made it easier to concentrate on Mom. Daddy said just knowing he could pick up the phone day or night and get an answer or help from someone was huge! Just knowing that he was able to bounce a feeling or observation off of a neutral third party was wonderful.

As I said, Mom had a nurse, a shower/hair person, a social worker who came and chatted and always brought a huge bouquet of flowers, companions to come and chat. My Mom was a very outgoing and self reliant person so I really wasn’t sure she would accept this. I had to have the talk with her first and one afternoon told her how worried I was about Daddy. She may have been hesitant at first but once I played “the Daddy card” she was onboard.

They made a tremendous impact on our lives and they were a godsend. Here is the link for the Hospice and palliative care we had in Greensboro. The link has tons of information on it about Hospice in general. Make an appointment with your local Hospice and go and talk with them. You don’t have to commit right away. Just having the information is empowering.

And remember……..THE FIRST RULE OF CAREGIVING IS YOU HAVE TO REMEMBER TO TAKE CARE OF THE CAREGIVER FIRST!!!!!!!

http://www.hospicegso.org/

Here is the palliative care link…

http://www.hospicegso.org/about-hpcg/hpcg-services/palliative-care

This is hard but we never regretted it. Daddy has said numerous times how thankful he was that some things could be handled so he could concentrate on the love of his life. Mom died two weeks before their 58th wedding anniversary…….

Nan, PLEASE call the ONC and re think Hospice. Hospice is not giving up but will make your Mom’s life easier and much more comfortable. I believe your Mom’s comfort is so much more important than the others thinking about seeing her that way. When Teddy was in Hospice at Home we had so much valued quality time. We actually had some fun and made many valued memories. Hospice can be ordered for a whole year if needed. Someone needs to step up here and be a Hero to Mom. Be strong, Nan, we care!

That’s interesting that they said that. My mom always had dates that were 2 month intervals on her folder. Unfortunately she never made it passed those dates. But they did tell us you could be on them til you got better. And that you could go off of hospice care at anytime when you were feeling better. Like I said my mom was not going to give up.

Marion, My mom was a fighter and never wanted to give up. At the beginning of September when she was in the hospital for a week getting blood transfusions and stuff, I had gone to speak with her doctor. Her doctor told me she only had a few months left. The doctor, without telling her how long he thought she had (remember, she didn’t want to know) suggested my mom start on hospice care. However, my mother also knew that there was still a treatment that could have helped her. So the doctor suggested palliative care. My mom was having a difficult time getting around since mid July. When I would bring her in to the hospital for her chemo she had to be in a wheelchair. She was unable to walk to far. therefore, the doctor suggested palliative care so that the nurses would visit my mom instead of her having to go to the hospital for blood work and stuff. After my mothers chemo treatment she would go in for 4 days in a row to get her white blood cell shots. Her palliative care was set up through Kaiser. I guess the difference between Palliative care and hospice is that you are still able to undergo treatments with palliative care. You can not have anymore treatments with hospice. Both manage pain. Hospice you get all your medications and medical supplies for free. While under palliative care you still need to pay for those. The pain medications were starting to add up and that was why my mom decided to go over to hospice. However, she wasn’t on hospice for more than 2 weeks. Her staff still stayed the same. However, with hospice, the nurse was visiting twice a week instead of just once. The doctor had in place for a nurse to visit my mom everyday on the day she passed. But with palliative care my mom also had a physical therapist come to the house to see how she gets around. A social worker, who worked with all of us came over weekly. A bath aide came in twice a week to give my mom a shower. My mother really enjoyed the chaplin that would visit her every week. He even spoke at my others funeral.

I am thinking you need to be refered by your physician.

I just wish we started on palliative care much earlier. My mother hated going into the hospital. The staff was wonderful. Once a bath aide came in place of Jane, my mom wasn’t crazy about her, and then she never came again.

I hope that helped. There may be specific questions that you want to ask. Please don’t hesitate. Just know that my head is in a fog right now…I don’t know if I make any sense.

By the way Marion, I have a few checks that people gave to me to send in to the cholangiocarcinoma foundation. I’m thinking I just send them to the address listed. My classroom parents were also very sweet and sent in a donation.

Nancy, good thinking. Please let us know what happens…..

She must be seen! Sounds like a bad allergic reaction to something. What about taking her to an Urgent Care Facility?

Dear Nancy,

I’m sorry to hear that your mom is not doing well. Try to stay strong and accept all the help that you can get. Marion is right when she says you must take care of yourself, too. Know that you have done everything that you could for your mom, and how lucky she was to have such a loving daughter. I will keep you both in my prayers. PeggyP