Update on husband and hospice

Jeanne C.

My husband has been on hospice care for about a month and a half. I definitely didn't think he was ready and was truly surprised when he was approved. I've been blown away by the level of care. His nurse comes weekly and is so good with him. The CNA showers him twice weekly. The social worker, chaplain, and music therapist come every other week. I get calls from the volunteers leading into each weekend just to make sure we have what we need. The social worker even found me a therapist with hospice experience.

Yesterday, my husband had a seizure (more progression, I guess). The on call nurse walked me through getting him settled after and dissolving lorazepam for him. The doc ordered an anticonvulsant within minutes, and it was couriered to us within an hour. The on call nurse has already called to check on us today and his regular nurse will be out here first thing tomorrow (on call offered to come last night but I didn't see a need). Before hospice we would have ended up spending time in the ER for no real purpose.

This is all hard and scary, but the hospice team has been so helpful and kind. I really want to encourage anyone else who is hesitant about hospice to keep an open mind.

wose

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💜

harshedbuzz

I'm sorry for the progression but glad for the help you are getting from your hospice team.

Thank you for sharing this.

HB

ImMaggieMae

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

Caro_Lynne

Jeanne, thanks for the update and the useful information. My LO's PT once asked me if I've inquired about hospice care for my LO. He told me about another of his clients that is no where near as impaired as my LO and he's on hospice. I had not considered hospice until he mentioned this to me. I guess I'm not ready to go there yet, however, your experience gives me insight into the support available through hospice. Question: did you have to turn over all his care to hospice team? I mean no longer seeing his regular PCP, geri psychiatrist, etc. Does he still get same meds?

Glad your DH is receiving such great care and that you are also receiving much needed assistance xo

midge333

Thanks for sharing your experience. It is helpful to those of us who will deal with this in the future.

Jeanne C.

https://alzconnected.org/discussion/comment/209737#Comment_209737

Hi Caro Lynne - yes, all care is managed through hospice. He still gets the same meds he was on. I have to admit I was hesitant to stop going to his geriatric/memory care provider but the doctor reviewed her notes and is continuing on the same path (his PCP was next to useless so no loss there).

fmb

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.

RickM

Thanks for posting your experiences. This is definitely the way to go. That being said, the last stage of Alzheimer's is a rough journey.

Walter0617

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.

Rocky2

Walter0617, In my experience, the hospice nurses were the most experienced and provided the best explanations about symptoms my DW exhibited. Have you asked this question of your hospice RN? If not, I would suggest that you do. Any questions I had were responded to both kindly and honestly.

Tom

M1

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.

mommyandme (m&m)

https://alzconnected.org/discussion/comment/209737#Comment_209737

When my LO was admitted into hospice, I kept her PCP and neurologist on board. I didn’t want to lose them in case she was discharged. (Unfortunately she was after 1.75 years only to have to call them back 2 mos later on an emergency basis, long story). A couple of prescriptions I kept through those two drs and just kept up with them via virtual visits. All our medical staff knew of the others so all was above board and covered. Our hospice nurse was ok with whatever I felt worked.

Hospice is so wonderful IME. If you can get them on your care team sooner than later, do it. 😁

CStrope

https://alzconnected.org/discussion/comment/209797#Comment_209797

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.

GothicGremlin

@Jeanne C. I'm so sorry that the two of you are going through this. Late stage 6 and stage 7 (and everything that goes with it) are both very, very difficult. But my hospice experience with my sister was much the same as yours is now: hospice was very present, and they were amazing. The whole team - the social worker, the chaplain, the music therapist, the nurses, all of them … and then to know that they were on it with regard to the supplies that Peggy needed, depends, pads, etc. I felt like this was the one time where the cavalry came, and with necessary supplies! And it wasn't me who was the cavalry! I think the only things I needed to make sure Peggy had were personal care items and wipes. I had no idea hospice was like that. Had I known, I would have had Peggy evaluated sooner.

@Caro_Lynne My experience with how hospice interacted with Peggy's other doctors is a bit different than what others experienced (or are experiencing). Peggy's medical care came through Kaiser, and so did her hospice team, so they all knew each other. I loved Peggy's geripsych, she always came through for us, and I got to keep her. She worked well with hospice, again, I think, because they all knew each other. Some meds were discontinued, and we stopped seeing Peggy's PCP in person, but we kept her in the loop, and used her as necessary.

@CStrope - that's concerning. I never saw (or heard about - and I was like Lord Varys - I had little birds everywhere) anyone reprimanding Peggy for some FTD-behavior she happened to be exhibiting at the time. And she was challenging the last year of her life.

ImMaggieMae

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?

GothicGremlin

@ImMaggieMae - if you're asking me that question, I think it was because it was all within Kaiser and they all knew each other. I don't think Peggy's experience is the norm. And hospice was definitely in charge, the geripsych and PCP were just back up/continuity. I had the ability to email any one of them because of the computer system (and Peggy's electronic medical record) that Kaiser uses. Peggy's care never followed the normal trajectory because she was so young. She was 64 when she passed away, so she never qualified for medicare.

Jeanne C.

@CStrope I would have a conversation with the nurse at the MC. That is very alarming

https://alzconnected.org/discussion/comment/209829#Comment_209829

I would have a long talk with the nurse or director. That is very alarming. Sorry you're dealing with this.

Jeanne C.

https://alzconnected.org/discussion/comment/209867#Comment_209867

My experience with meds, Medicare, and hospice is that hospice takes over the meds for the condition the patient was admitted for (FTD in our case) as well as comfort items (pain, sleep, constipation, etc.). We would still go the original prescribing provider for other meds. After discussing it with the hospice doc, we discontinued his BP meds because it was lowering his pressure too much, making him a fall risk. I would have been able to use his cardiologist for that if we had continued.

Caro_Lynne

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.