Update on husband and hospice

I’m so sorry you’re going through this. Thank you for sharing all of this. It gives me a glimmer of hope to know there is indeed some help to be found down the road. Peaceful thoughts and hugs for you💜

Thank you for the update. I’m glad you finally have some help. Support can mean everything. Hugs to you.

Jeanne, thank you for sharing your hospice experience. I'm so glad it is working well for you and your DH.

Caro Lynne, I have found hospice to be an invaluable help in dealing with DH's care even though he lives in a facility. The AL facility had the on-call hospice nurse see him today because of a drastic change in his condition. The regular hospice nurse will follow up with me tomorrow. She sees him twice a week. His bath aide will shave and wash him Tues., Wed., and Friday. The social worker checked in with us last week, and the chaplain comes every two weeks. I am attending their monthly caregiver support group on Tuesday. They have also provided visits by a therapy dog, and some people receive regular visits from volunteers.

In addition to the services I mentioned above, hospice also has provided a hospital bed, wheelchairs with upgrades as needed (He is now in a Broda.), a Hoyer lift for transfers, a bed table, shower chair, incontinence briefs and chux, wipes, hygiene supplies for showers or bed baths, and catheter supplies.

in my experience, the hospice team works with the AL facility and me in coordinating DH's care. All changes are run by me before being implemented. His hospice nurse (a very experienced RN) is a very good source of information and support. DH has not needed to be seen by a physician since he entered hospice. Catheter changes are handled by the hospice nurse. All medications are ordered by the hospice physician based on consultation with his nurse. We chose to discontinue all other regular physician visits. You would need to ask your chosen hospice provider how seeing other doctors (geri-psych, etc.) would work.

Upon admission to hospice, the nurse and I went over all of his medications and supplements and kept only those with usefulness toward his comfort. No more BP meds or blood thinner beyond aspirin. She explained that his body was no longer able to absorb the supplements he was taking, and they were discontinued. He does not need pain meds beyond Tylenol. He was recently prescribed Lasix (a strong diuretic) to help relieve the discomfort from lower body swelling (edema from CHF), but he is having fairly severe side effects and the drug will probably be discontinued tomorrow. He has received antibiotics for UTIs. If he needed psychiatric medications, they would be available. When his CHF progresses to the point of needing supplemental oxygen, it will be available as a comfort measure.

In short, we are no longer treating any of his conditions with intent to heal, only to provide comfort. This is the hospice philosophy.

I really appreciate this post. My DW entered hospice care a few days ago. She has experienced a fairly steep decline since she was assaulted by an employee at her previous MCF back in March and spent 15 days in the hospital. The big issue now is that she is not eating or eating very little. I try to help feed her but can only get her to take a few bites. I'm just getting started with hospice, but so far I feel good about what I am seeing. The hospice nurse said they may be able to get DW eating more but that remains to be seen. She is still able to walk but is getting noticeably weaker. DW rarely speaks and when she does her voice is so soft no one can hear her. She has very little, if any, quality of life. My goal at this point is to keep her as well cared as possible for as long as possible. Has anyone else experienced their loved one stopping eating? How did that play out? This is new territory for me and I'm wondering what to expect.

Jeanne, i am so glad you are getting the support you need and deserve. Walter, i think refusing food and water is pretty common at the end of life. Hunger and thirst are not prominent symptoms as they would be for someone who can recover. She may or may not pick back up on it, and I am sure the hospice nurses will help you figure this out. Whether it be a few days or longer, they can help you negotiate whatever is ahead with as much ease as possible for both of you.

I worry all the time about how DH is treated by the staff at his MC. He has FTD, and most of the staff does not know how to properly work with someone with his dementia, they treat him like he has Alzheimer's and it is so different. They grab his arm to make him move and try and correct/reprimand him for what he says and does. All things that trigger aggression in an FTD patient.

I thought that once a person was admitted to hospice, they could no longer keep their PCP and neurologist and that all meds were prescribed by the hospice doctor and they were for comfort only? Since Medicare pays for hospice, do they also continue to pay for other doctors and the meds they prescribe?

So much great information on hospice. Thank you all for sharing your experiences. GG you were fortunate that you DS Peggy had such consistent care. I don't think I'm ready to give up his regulars docs yet. Incontinence started this past week. Thankfully he never opposed the special underwear, I don't think he knows the difference. He tries to hide the wet ones and I tell him it's OK, we all have accidents - so sad watching him revert to childlike behaviors.