How long has/was your LO on hospice for PSP?

[Ammie0809]

I'm wondering how long your loved ones have been on or were on hospice?

Thank you for your help!

[kenh1]

My wife was put on palliative care when she was diagnosed with CBD in March 2013. We were allocated a palliative care nurse who I can telephone any time I have a problem. The palliative care team and hospice work closely together. My wife initially went to the hospice one day a week for day care and to give me some respite from caring. On two occasions my wife was admitted to hospital firstly when she had aspiration pneumonia and on the second time she had gastroenteritis. On both of these occasions on discharge from hospital she was admitted to the hospice for assessment for a week where they planned her future treatment and prescribed medication. We are also offered day sits by hospice nurses one or two days a week. Though on some occasions sits are not available due to staff shortages. Our local health authority have linked palliative care with the hospice the doctor who founded the hospice being in charge of palliative care. Which is why in my opinion palliative care in our area is second to none.

[Reidallison in reply to kenh1]

My mom was on hospice for about her last 6 months . They didn’t see her alone, someone else had to always be there, but it was nice they had aids that would come and wash dishes,change sheets, paint nails,give baths, vacuum, (just giving examples) a couple times a week. The nurse would also come 2 times a week and take temp,vitals check for uti if needed bring meds if needed and also was just a call away if we needed them for anything at anytime! The chaplain was the most amazing woman ever... wow!,, is how I can explain her AMAZING. My suggestion is you can’t get them involved too early.

[Babowen898 in reply to kenh1]

Where are you located?

[kenh1 in reply to Babowen898]

We are in the U.K. Our local Hospice is a charity which receives some funding from the NHS.

Most hospices in this country function on similar lines.

[Dadshelper]

Dad was in a nursing home last 10 months or so till he passed and hospice was involved the last several weeks. My Aunt had home hospice for the last 11 months her life (3rd recurrence of lung cancer and she choose to do no treatment).

Ron

[stephanotis]

6 days. They don't do much, not even cleaning him, only provided bed, oxygen tank and other supplies.

Maybe because they saw we have a caregiver. They only took blood pressure and body temperature.

[Cuttercat]

We had Hospice for a year and a half. Wonderful people.

I live in North Carolina

Cuttercat

[racinlady]

My husband has been on hospice for 2 1/2 yrs now. We are in the U S. They have been a godsend, especially the first year when we were living in a remote area with no other services. They were able to get us any equipment we've needed, checked his vitals regularly and helped with solutions for care issues as they arose. Now that he is in assisted living, they help and advise the staff as problems arise. Just the support they offer and the fact that there is someone to call when problems arise is invaluable. I believe having hospice involved has allowed him to be in assisted living instead of a much more expensive nursing home. I highly recommend getting hospice involved sooner rather than later.

With that being said, I've also found that not all hospices operate the same. Having dealt with 3 different hospices, I recommend looking at all of your options in your area, check reviews and medicare's ratings (if in the U S). You and the hospice should operate as a team in the care of your loved one. I recently changed my husband's hospice because that wasn't happening. So far, the new hospice is operating more like the first hospice we had and I am grateful for that.

Pat

[tlovins]

My dad (PSP) has been on hospice for almost 5 months. My only regret is not seeking them out sooner. They have been a great comfort and advocate. Although I will say I think the symptoms of PSP have tricked them a little bit. His bouts of unresponsiveness and not swallowing had them thinking he was nearing death and here we are 8 weeks later. Other benefit, the particular hospice we have pays for anything related to PSP, medications, briefs, catheter etc. We are in the U.S.

[birbly in reply to tlovins]

Where in the US are you

[JubileeRanch]

I too would like to know where in the US you are? We are in Texas

[bevricas in reply to JubileeRanch]

I am in Texas also, Austin area. Husband has PSP. Is there a PSP group in Texas?

[Ammie0809]

I really appreciate all of your responses. We are in Utah. My boyfriends father was put on hospice 2 weeks ago. He hallucinates sometimes. He had a UTI and nearly pulled out his catheter and was hospitalized for a week. He was doing so bad and refused food for 3 days so we thought we were getting close. Now he has recovered and he can feed himself, get up and go to the bathroom (still has a catheter), and even ate a grilled cheese sandwich and fries for dinner Sunday. He is sick, but his kids think his time is short so they won't move him closer to his son. He currently lives 25 miles from Jason, and Jason goes down to see his father every single day. His mom also has mid stage Alzheimers. When Lee was released from the hospital they were going to move Lee to a place 5 minutes from Jason but the assisted living promised they could take his mom to see his dad every day. Later the nursing director said no, and Lee won't call Jason on the phone if he needs something (unless it's to go to the ER because he thinks his catheter is broken, which is 1-2 times a week and it works fine), and he expect Jason to go down every day. I live 50 miles from Jason in the opposite direction and still have young kids. I love that he takes care of his parents so diligently, but the assisted living facility is brand new and don't know what the h... they are doing and call him all the time for help. There has been more than once he's had to go down twice in a single day. And because I live 75 miles from his parents, I can't help except for the weekends my boys are at their dads. If they were at least by Jason's house i could take care of them so he could go skiing with his friend, or have a night off every other week. It's breaking my heart and I don't know how I can last if it's going to be 2 more years. I had to go to the doctor with an ulcer in my esophagus Friday from all of the stress. It's been almost 9 months and I'm struggling.

[Jdjdjd]

My husband has as been referred by Gp to attend the day centre at the hospice, and he has had 2 x 3 month sessions of 1 day every 2 weeks, they collect and return him and provide lunch and activities also they discussed end of life wishes and DNR etc, which can be difficult at home, he is starting back next week and will be going one day a month ongoing, which means we don’t have to keep asking our gp for referrals

Hope this is useful, as any little bit of respite is welcome, my husband didn’t like the community day centre and only went once, as he said it was all old people, he’s 75!!!

but he enjoys the hospice as there’s a mixed bunch of people

Good luck

Janet’s