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In the morning, and daytime, he is a "Kid in the candy store" happy, laughing, smiling, at night he becomes an angry, swearing, confused, frustrated, hates everyone....guy. He is on home hospice care, and I KNOW it is too much for my mother to handle..but every night is a chore getting him to bed, or the bathroom, and he won't use the commode. He has to physically walk to the bathroom but once he's there and gets back up, he locks his legs and refuses to walk, sometimes sitting or directly kneeling on the floor, in which case she needs my husband or 911 to pick him up. His hospice nurse is nowhere to be found, and the Occupational Therapist is the best we have seen so far. Because he has a pacemaker and not able to do an MRI, they are unable to see if it has spread to his brain....But he has MORE melanoma that has shown up after his radiation and Opdivo treatments that the oncologist just said to stop everything. Is it possible his evening tirades are due to the Dementia, or the Melanoma that could have possible spread to his brain?


They have not given us a "Comfort Pack" for his pain, or anxiety, so we are still waiting on that..he often holds his head and moans. I am wondering if he is better being at hospice than at home...and if he would get better treatment there? Because they sure aren't giving him any here.

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No, please, don't even think of a hospice -- keep on insisting to obtain the Comfort Pack you've been promised - the better treatment you think he'd get there would be morphine which will result in death due to a heart failure!
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Reply to gabriela1458
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You need to go to the supervisor of the hospice nurse and state your issues.
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Reply to Llamalover47
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Yes because hospice can handle It All so much better than you can and all they want is to be comfortable quiet and loved. And you will be able to be there for them with less stress and sadness
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Reply to Leighone
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It's always best to say at home, and cheaper unless you have around the clock or in a nursing home. Several factors---how many in the family can help. The last choose is that.
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Reply to JohnBS
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I am really surprised that the Hospice nurse can not be contacted. If this has been ongoing I would call and talk to a supervisor. All team members have someone that supervises them. So if you do not get a response from your Teams supervisor ask to talk to the next on in line.
The Hospice my Husband was with used the In-Patient unit just to manage symptoms, respite and "emergency" type situations. I do not think there was ever anyone there as a long term patient.
It also surprises me that on Hospice your dad has OT, usually therapies like that are discontinued once a person is on Hospice.

Side note you might want to have the pacemaker disconnected if it has not already been. As your dad is dying it is possible that the pacemaker may continue to shock him leading to discomfort rather than doing what it was designed to do.

You can ask Hospice for a Hoyer lift, that would make getting your dad to the toilet much easier. A Sit-to-Stand might also work and Hospice could get that as well.

The change in the evening could be as "simple" as a type of "sundowning" or it could be that your dad and his brain are just exhausted and can no longer hold it together. Trying to process all that has happened during the day sort of like a child when they get over tired often that is when temper tantrums begin. Does your dad nap during the day? If not maybe a nap might help or going to bed earlier before he gets to meltdown stage.

Again....call Hospice and if you do not get a response that you want, call another Hospice. Just like any service, any doctor you can change when one does not meet your needs or expectations.
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Reply to Grandma1954
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Chemoangel1967 Sep 27, 2018
Thank You Grandma, yes he does nap during the day...and eats dinner at 4:00, past that he is a bear. Even with the anti-anxiety meds. We are working on him...one day at a time.
Much Love.
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Dear ChemoAngel,

Glad to hear there is some improvement in the services you are receiving.

Not being able to get a definitive prognosis makes it difficult to make decisions and choices about care.

I have seen hospice care give everyone - patient and the family - reduced anxiety, the opportunity to simply be together, and respite for already exhausted caregivers.

My Aunt was in a hospice facility for six months, and when her condition stabilized, she was discharged. By that time, her condition was so deteriorated that returning home was not an option. So, her family struggled to place her in a nursing home and apply for Medicaid.

I only use this example to say that the future is unknown and the journey can be unexpectedly long.

I encourage you to consider your mother’ health and other key caregivers with equal priority to your father’s needs.

Transitioning to a facility from home is not easy. But, also consider how well your family’s time could be spent with your father if professionals could step in and alleviate the hands on dementia care and nursing tasks.

Wishing you all the best. Remember to take care of yourself too.
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Reply to Gardens
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Thank you for your answers, yes the nurse finally explained to us about sundowning and now it all makes sense. She also gave us the pack of meds. Hopefully thinks will get better from here.
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Reply to Chemoangel1967
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You need to get another Hospice. This is not how Hospice works. A Nurse should check on him a couple of times a week. You should have an aide daily to help with bathing. The Nurse should have trained you in the beginning on how to administer the pain meds. Hospice is all about comfort and pain free. A nurse (RN) should be available 24/7 for any questions or concerns. I would call Medicare and report that Dad is not getting his care. They could be billing for services he is not receiving and this is fraud,
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Reply to JoAnn29
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It sounds like your dad is sundowning, which is pretty common in dementia. Metastases to the brain wouldn't be my first thought.

Your hospice organization sounds...wanting. I'd try to find another who will address your dad's mental health needs right away.
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Reply to BarbBrooklyn
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Hospice at home allows people to spend their remaining time in familiar surroundings but the unfortunate downside to that is it leaves almost all the caregiving to the family, and almost none of us are qualified to take it on or have done this before. It's not uncommon for dementia to worsen in the afternoon and into the night, that's called sundowning, and I don't know if he has the time left to experiment with medications that may help to alleviate some of that. IDK if moving him to a care facility, either a nursing home or stand alone hospice, a possibility - it will depend on his ability to pay and you and your mother's willingness to consider the option. Another option is to pay for extra help in the home, perhaps someone who could stay the night.
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Reply to cwillie
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