Hospice at home

lunamossgirl

Hello.
My mom has started hospice. Currently staying at my brother's home. Dad can't handle the care.
Mom had a UTI about 2 weeks ago. Got antibiotics in the ER and sent home with meds, since then she had declined.
I mean rapidly. And now we have a hospice nurse that "stops in".
In the last 2 days mom has become bed ridden and is heavily medicated for pain and restlessness. The family is fighting due to I'm sure lack of sleep and stress.
I don't understand why the nurse only makes brief visits with no help with self cares.
I thought the hospice "team" would be more help than leaving us pain killers to administer and a binder about hospice..
I had to change my mom's pull ups yesterday and it was a struggle. She's in bed and can't help, also rigid when I tried to move her.
She is dying, I'm sure. And the last 2 nights I was there "sleeping" next to her bed they brought in for us. I hold her hand all night and try to calm her if she gets restless.
I feel crazy and I'm definitely over tired.
I hadbeen helping my dad every weekend at their appartment with cleaning and wash and having dinner with them. Usually spending 8-10 hours there. We just moved them there in September.
I work 12 hour shifts outside the home 4 days a week, and am doing for mom n dad as much ad I can.
Last night my brother became verbally abusive to me because I was crying in front of mom. She got restless and tried to get up, so helped sit her up and was rubbing her back and hips, I felt so bad for her and I was crying but hugging her and she was hugging back.
He yelled at me to "pull it together" and told me I had to be strong.
She wasn't getting upset, if anything we were comforting one another and she was doing better with me rubbing her back and hips. Even responded yes when I asked her if it felt better.
Anyways, my brother was talking to the hospice nurse who had just arrived in the kitchen and bitching to her that I was upsetting mom.
Then the f-ing nurse comes over and said I should calm down.
Literally, I was just quietly crying a little and mom and I were good. They blew everything out of proportion.
He started yelling at me again when I stood up and I told him to stop telling me how to feel. He then told me I haven't been helping them (untrue) for a year and a half, and he told me to get the f off his property.
I know this is a long post, I am super frustrated with the hospice and don't get why they are not around more than 20-30 minutes a visit.
We are burnt out and this is hospice help?

fmb

I am sure there are others here who have a lot more experience with hospice care (only 1 mo. into it here) who can provide more information. There should be a care plan in place and provided to the family. It will spell out the services your LO should receive. We currently have an aide who comes 3x/week to shower, shave and dress my DH. She also observes the condition of his skin and his catheter output and weighs him periodically. Any potential health issues are reported to the nurse, who comes once a week. He also has periodic visits (every couple of weeks) by a social worker and chaplain. Durable medical equipment (wheelchair, hospital bed, bed table, shower chair) have also been provided. As DH's condition worsens, the frequency of services will be increased. Has your family requested a re-evaluation of your LO?

If the UTI is not clearing up, you may have to request another urinalysis to determine if it is caused by drug-resistant bacteria. My DH required IV antibiotics to clear up a deeply entrenched UTI caused by two different drug-resistant strains of bacteria.

I so feel for you. I was DH's sole caregiver in the home and understand the incredible stress you must be under. It sounds like you and your family are near the breaking point. Please try to take care of yourself, even if just in little ways. This forum is a good, safe place with a lot of caring people who understand what your family is going through.

lunamossgirl

https://alzconnected.org/discussion/comment/192396#Comment_192396

We just got hospice this past week. Our local aging resource services were of very little help.

My dad actually got more info from his VA doctor who was concerned about his mood due to all this.

So we went through the agency the VA recommended because of the lack of help from our ADRC.

Also, my dad and mom owned the house my brother and his SO and kids live in, they never made a irrevocable trust so that the home could not be considered an asset with my parents. So consequently we don't have funds otherwise to place her in memory care since Medicare won't pay for that.

Everything that is going on is all being done last minute. So unfair for my mom. I'm pretty angry.

And on top of it, my brother and his SO are functioning alcoholics... so daily they are drinking , I'm pretty much the only one sober here.

The hospice RN said yesterday " you are all doing a good job. Most people at this point are not able to do this care and have to place their LO in a care home".

I pretty much agree. We are not equipped to help her as much as she needs at this point. But dad and brother say we don't have another alternative and they expect everyone to be there. I physically can't be there during the week and just spent 2 days this weekend taking afternoon till next morning being the night person. Apparently it's not enough. As I was told I'm "not around". Which is not true.

I'm just disgusted with everything. The lack if real assistance, the squabbles with family. And the shitty way the men in my family are acting.

I had taken mom in 2 years ago to ask about memory loss because she was repeating herself quite a bit, I was concerned. By then , she was already denying having any issue and her doc was not too helpful.

I finally pushed for more memory testing and we got the ALZ/VD diagnosis. By then she already had Anosognosia, so it was impossible to talk to her about her condition.

The decline since 2 weeks ago is startling. She was still walking and eating and now 2 days ago bed ridden. Literally happened so quickly.

JDancer

So sorry you're going through this. You sound like a loving, caring daughter and your mother is blessed to have you.

Stressful situation like this can cause terrible family rifts, especially when alcohol is factored in. I urge you to try and preserve your relationships. The last years of my alcoholic (no dementia) father's life were very difficult. When he began to rage , I would just walk away. Some people find Alanon helpful for dealing with alcoholics, but I don't imagine you have the time for meetings.

Hopefully you can arrange a care plan meeting with hospice. Perhaps the holidays caused a delay in scheduling one. As you plan what the outside caregivers will provide, perhaps family could decide what they can/will provide. I'll sit with mom on Tuesday, I'll cook dinner on Monday, etc.

Good luck to you. I know the struggle is real, but when the journey comes to an end, I think you'll be grateful for the support you gave.

CatsWithHandsAreTrouble

Your situation feels very similar to mine. How are you doing now?

I'm also confused about the care hospice has been providing for my own mom. She's been on hospice since November I think. They're great for medical equipment and they don't might med changes like her pcp was. But that's about it. They provide free to us incontinence underwear and medicine but mom's government assistance was already doing that previously. They also seem to only show up once a week to get her vitals, check for sores, and then leave. I'm not around when they're here so perhaps I'm missing something.

A social worker and a chaplain visited today and I was given my own personal booklet for the company so I could see what they're supposed to be doing and what I could do on my own.

Maybe you have been getting hospice nurses with poor work ethics. Perhaps read up on what benefits/services they offer and start demanding them. Your mother can't advocate for herself and it seems like your other family members are too stressed out to be her voice. I know you're not doing so well yourself so just try what you can.

mommyandme (m&m)

My understanding about hospice is they should be providing a CNA to offer baths etc (hair, nails etc) a couple of times a week, who can also help instruct you on how to do the personal hygiene tasks. The RN had to do toenails. For us when mom was transitioning, the RN and CNA would come in once a day. You should have access to a social worker too and probably music therapy, a chaplain and a respite volunteer, weekly or biweekly. Hospice doesn’t provide round the clock care…the rest of the toileting, changing adult briefs, feeding, cleaning and medicating is up to the round the clock caregivers. You should be able to call any time, day or night, with questions and concerns. You may not get your team nurse but someone will help you. I also called for help and a nurse came over as soon as she/he could. Sometimes a hospice company change is necessary. I hope you’ve gotten some more help from hospice now.