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My dad at his final months-what to expect
Hello. I am new to the forum and I signed up hoping to get some help.
My dad was diagnosed with high grade urithelial carcinoma , muscle invasive last year. He had 4 rounds of chemo , and a radical cystectomy this past February . Lymph nodes were clear . In April he started having bad pains in his pelvis and genitals , then nerve pain in his leg. He wasn’t diagnosed until August with bladder cancer recurance ( even though the bladder is gone ). He started radiation and chemo for 6 weeks . In September he had no metastasis . In October they found spreads in both lungs and liver . The cancer is so aggressive . He is starting immunotherapy tomorrow but the doctors are giving up very little hopes . They said he has 6 months or so .
He is not eating anything and he’s very weak , lost 60 lbs , in a lot of pain , and he stays in bed literally all day long . We are so devastated . How do we accept there is nothing that can be done for him ?
He has a 4 month old grandughter , all he talks about is how he wants to see her run in the yard .
He is only 57. He is so young and wants to live so bad . We are all heartbroken. It is only him and my mom here . We have no other family . We are devastated.
I was hoping to get some insights on what to expect in the final stages , and any advice , anything and everything is helpful . Please shareAngelina
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7 Replies
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Angelina,
Without giving up hope, from my experience with my parents, the plan become to keep the patient comfortable, safe, and engaged. For us, it was a time for having family and friends close as much as possible, making sure that dad (then mom) knew they were loved and appreciated. Hospice help greatly with the daily physical comfort. Hospice needed to be accepted – for a while dad was not ready to accept the inevitability described by his doctors.
From a more practical standpoint, it is time to make sure that the survivors are cared for as well. Depending on the situation, other’s lives will change. Easing the change for survivors is also important, even as it may be an uncomfortable task to consider. The primary caretaker(s) need time off to decompress. Lawers and bankers may need to be involved in protecting or transferring assets. All those things weigh on the survivors, but do need attention, sooner rather than later.
Please seek whatever help may be needed from doctors and the care team. But most importantly, take care of yourself so that you can best help the patient. It is a tough time for all involved.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
I found Hospice to be invaluable along with Grannie Nannies as my mother was declining. My mother was not diagnosis with cancer rather a blood disorder causing very high platelet count and severe anemia. Instead of my mother having to go to the doctor each week for a Procrit Shot, the Hospice nurse came to the house to give it and check on mom. We had their assistance for nearly 8 months. A volunteer came to the house every Sunday to sit with mom so I could have “me” time be it go to check on things at my house, sit by the water or whatever. I had moved into my moms to take care of her and worked all day while mom was with nurse and cared for her at night & weekends. Hospice is typically there for end of life but my mom hung in there for 8 months declining more and more as time went on. When I finally got to the point that I simply could not do it anymore, they where able to determine it was the final days and were there immediately with the hospital bed and a nurse around the clock to keep mom comfortable. Of course by that time I had no clue how to sleep through the night but it was ok with the nurse if I got up to check on her though she encouraged me to sleep, that she had it under control and mom was resting comfortably. Don’t know what I would have done without them and am so thankful they were in the picture early on so there was no last minute scramble. Likewise they are there for guidance after mom passed and to discard un-used medicine that must be handled properly. Not flushed and not just tossed in the trash for anyone to rummage through and get their hands on. It was the hospice doctor that made all the death certifications etc. since mom passed at home which in some Cities and States can be a little challenging. I am so thankful I was able to spend those last months with my mom, my best friend, my travel buddy. I know some folks refuse to get Hospice involved simply because that means they are acknowledging they or their loved one may be nearing the end of their life, but they are just so helpful. My hats off to Hospice in my area. Tampa, Florida
Susan Peterson
As Cynthia said hospices do very in what they offer . My dad was at home for almost 6 months with my mother usually alone as his caregiver . Hospice provided a nurse to come in once or twice a week to check on his health and medications and a nurses aide (male) Who stopped by several times a week to bathe and shave Daddy. In addition a volunteer respite worker came by appointment so that mother could go out and do grocery shopping, get her hair done or just get away . On the other hand my mother was living in an assisted living facility and was able to stay there instead of moving to a nursing home because of hospice support . The staff at the assisted living facility was able to call hospice for medication or nursing help when they would not have been able to reach a doctor . Hospice was able to provide a hospital bed in the assisted living apartment which made it possible for the facilities staff to care for mother .
For both my parents hospice made it possible for them to spend their last days in a familiar surrounding around people that they knew and loved .
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
We are starting hospice next week , but from my understanding it involves a nurse who will visit him a few times a week and some pain medication. I hear people are very happy with hospice usually , I just don’t know how much benefit there will be overall .
I’ve read so many posts here and I truly feel so bad for all the people who have to go through this horrible disease and I admire them for their strength and heroism.Thank you so much for answering and for your advice . I appreciate the support.
We are starting hospice next week , but from my understanding it involves a nurse who will visit him a few times a week and some pain medication. I hear people are very happy with hospice usually , I just don’t know how much benefit there will be overall .
I’ve read so many posts here and I truly feel so bad for all the people who have to go through this horrible disease and I admire them for their strength and heroism.Thank you so much for answering and for your advice . I appreciate the support.
Angelina, I am so sorry that you, your Father and family are faced with this terrible situation. I hope with all my heart that the immunotherapy offers a solution for your father. No one can tell you the exact path this disease will take with anyone or give exact timelines. But I can offer this piece of advice and it can be a valuable one for many. Most people do not like to talk about Hospice but they can offer plaintive as well as end of life care. Some Hospices offer care and you can still be receiving treatment others do not. You would have to check around and see there are usually more than one Hospice’s operating in any area. Hospice can offer a lot, at its best it can offer the best quality of life avalible as well as offering dignity. They should be all about offering help, compfort and allowing the family to concentrate on making memories and not worrying. All Hospices are not created equal, many work for your home some do not. A talk with your doctors should help you find the right one.
I know this does not answer all of your questions but I wanted to let you know that I read your post and that I cared. If you need to talk we hare here.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Angelina, I am so sorry to hear about your dad. This is so hard. I do recommend that you contact Hospice asap if you haven’t already. They were so helpful for both my mom and my dad. Too often people wait until the last minute
for this, but they have so much to offer ….and if it turns out that he recovers and doesn’t need them any more that is OK too.Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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