Estimating time left?

Quilting brings calm

I previously posted that my step-dad was accepted into hospice a week and a half ago. Neither the hospice nurse nor the AL nurse would give me a time frame. Does anyone know a website or PDF that I could try to estimate a timeframe with?

He might drink one regular sized Ensure or water - total- a day - maybe. He’s probably eating a bite or two of food a day. I’m not there for all the meals, but the staff is pretty much shaking their heads when I ask if he ate. We brought him home fried potatoes today at his request- he took one bite. He took two sips of a McDonalds vanilla shake I brought. The assistant had talked him into sitting at the kitchen table in a wheelchair. He put his forehead on the table after five minutes and complained of pain. The AL nurse came in from home ( she lives close) and gave him morphine via a squirt into his mouth. He went back to bed, said he wanted people to quit doing things for him ( they are just trying to keep him comfortable) and that he was ready to go. He’s trying to give away ‘his’ stuff - to people other than my mom, his wife. The car is jointly owned, for one thing. The money he moved to ‘his’ account from the joint account would still be within a five year look back if we needed to put Mom on Medicaid. The will says everything goes to mom. We just let him talk. He's not in a position to make any of it happen. He’s using a urinal because he can’t make it across the hall from the bedroom to the bathroom with his walker. That happened three days ago, And now wetting the sheets too. The evening staff found him some depends last night( not sure if they were supplied by hospice or not)

I told the AL nurse that hospice had not called me ( the medical POA) other than the evening of the day they accepted him. The AL nurse is keeping in touch with them.

Your thoughts on a timeframe? Don’t hold back- I’m not in denial. I’m thinking a week.

fmb

I am surprised that hospice is not communicating with you. Have you clarified to them that you want communication on a regular basis in addition to immediate notification of any crisis?

Tam Cummings has an updated Actively Dying Assessment Tool (ADAT) appended to the updated Dementia Behavioral Assessment Tool (DBAT) on her website at: tamcummings.com/tools. Click on the DBAT download. (The ADAT that is linked on the right side of the webpage is not as current or comprehensive.)

When my DH recently began exhibiting some of the behaviors in the "Final Weeks" section of the ADAT, I asked his hospice nurse directly for an estimate of time left. She did say 2-3 mos., but emphasized that the progression toward death can be rather variable. People can live for weeks on very little food and water, for example.

M1

Might be longer than a week QBC but I doubt if it will be a month, based on what you’re describing. With you in spirit.

Quilting brings calm

Thank you @fmb and @M1 This is hard to watch. Especially for our remaining son(43), who was always very close to his Grandpa.

fmb- I tried to make it clear to the AL nurse that I wanted more communication with the hospice nurse The AL nurse is not very happy with the hospice agency right now as she feels they could be doing a better job bringing supplies, etc. I will get out the paperwork and call the hospice agency myself tomorrow(Monday).

I'm trying to be out there at least every other day. Mom has two doctor appointments this week, and I have two non medical appointments. Plus a cracked windshield that I noticed today. Darn semis and the rocks. Not sure when that’s getting handled - it’s not in my line of sight yet. But, yes, I know it needs done for legal and safety reasons.

BassetHoundAnn

What a difficult time for your family, Quilting. I'm so sorry.

In my observations when someone with dementia acquires a pale, mask-like face, gaunt, taut, with no expression, their time is probably limited.

I haven't found any of the online calculators worth the time.

I think this page from the Alzheimer's Association in the UK is pretty good: https://www.alzheimers.org.uk/get-support/help-dementia-care/recognising-when-someone-reaching-end-their-life

ButterflyWings

(((QBC))) - You have so much on your plate and your heart. We are with you. It sounds like maybe you need a new hospice agency if there are others in your area? This is not the level of responsiveness that can be expected of hospice generally and especially with the urgent needs your LO has at the moment.

e.g. Our hospice nurse came 2x weekly when DH was struggling with aspiration or was otherwise showing significant progression. They have also phoned and visited on the weekend and middle of the night when I called due to emergency issues. And the CNA came 3x weekly, not only to deliver supplies but to use them, e.g. washing his face, dental hygiene, lotion on his hands, arms and feet, and would have given him a bed bath and changed his incontinence briefs if needed (but I was home 24/7 with him and there was no need.

Actively_Dying_Assessment_Tool.pdf

Here is the Tam Cummings ADAT ("actively dying assessment tool") that @fmb mentioned. It breaks down some indicators for general timing in final months, weeks, days and hours. Even though everyone is different, what your LO seems to be experiencing (and saying he wants) right now, seems to be imminent.

And...

DBAT.pdf

THIS version of the ADAT tool (scroll to p 5 of the DBAT packet, is more detailed per fmb. I hope it helps.)

Wishing you strength as you care for both parents at this difficult time.

BassetHoundAnn

Here's a good video from "Hospice Nurse Julia" on How Does Someone Die from Dementia: https://www.youtube.com/watch?v=6VtRH7NzqF0

Includes many good care tips.

harshedbuzz

Hugs to you dear @Quilting brings calm and your family at this time.

It's really hard to predict. My auntie with dementia went through a couple of periods where she barely ate/drank for upward of a week before rallying. The fourth time she did this, she didn't bounce back, and it was about 2 1/2 weeks before she passed.

HB

SusanB-dil

'this' is all so heartbreaking. Dang!

@Quilting brings calm ((hugs)) and thinking of you.

Agreeing with @harshedbuzz , as someone I know is dealing with just that right now. She seems to rally for a few days to maybe drink a protein, and then is just barely 'there'. This has been going on for almost 2 weeks. The family does not expect her to hang on much longer, but it has already been longer than anticipated. (her dil is signed up in the forum, but has chosen to remain quiet. I will respect that)

Quilting brings calm

Step-dad’s dementia hadn’t advanced from stage 4. He’s most likely dying from cancer - either the thyroid cancer nodules in the lungs have grown or metastasized in his side. Or it could be the COPD. I posed my question here because I assumed the dying process would be similar enough to dementia. Plus I needed everyone’s support

it sounds like we’ve got a somewhat longer period than I expected. That’s going to be really hard on my mom and our son. They both love him very much. He’s not my favorite person - but I hate that he having to through this rough process on his way out of this world. It’s my first time seeing someone go this long miserable ordeal up close. And it is an ordeal for him at this point.

@ButterflyWings . The hospice team is coming. The nurse was there twice last week. An aide, chaplain and social worker were there. All that was during the weekdays. However the hospice nurse isn’t calling me after his visits like I was told she would. The social worker called me for information before he visited him/ but not afterwards. I’m not hearing from them in between visits either. The AL nurse has been contacting them if she needs something from them. Dad prefers the AL staff to give him a shower, change his sheets, etc. it’s possible I’m not understanding how to make the best use of hospice since he lives in an AL.

JeriLynn66

Praying for you and your family QBC❤️

Quilting brings calm

$&@“. Curse, mutter, curse

11:30 at night and Mom’s calling me because the AL night staff is trying to change dad’s sheets because they are wet. They are attempting to get him out of the bed to change it and Mom’s yelling at them as I answer the phone. She’s mad because they weren’t instantly in the room when she pushed the call button. There are only two staff members on duty for 37 rooms at this time of night. They are doing the best they can. Then she is mad because they changed his pants and she didn’t like what they chose to put him in. I can’t trust her version of events due to her dementia

I told her to go to her own bedroom and allow the staff do get him cleaned up. Not much else I can do from 35 minutes away,

Is there a way to change a bed while someone is still in it? Because that’s the only scenario I see where they wouldn’t have to get him up to change the bed?

As for the clothes, she’s keeping the apartment blazing hot, I’m going to suggest that they put him in baggy shorts rather than jeans ( she said they were tight jeans). None of his clothes should be tight as he’s lost over 35 pounds as of 11 days ago. I see a conversation with the nurse again tomorrow

This is the second time in three days that I’ve got a phone call from mom where’s she’s yelling at the staff while they are trying to change Dads sheets. Mom’s got a psych appointment in the morning for her anxiety and depression . I think it’s time for something stronger than sertraline and mirtrazipine. Not sure I will be able to get the newest psych resident ( teaching hospital) on board to instantly change her meds on his first visit with her.

Edutted to add: I know this is hard for her. I’m venting to you all because it’s hard on me too.

M1

It is indeed hard and i'm sorry, I sort of wish your mom didn't have a phone but realize that's not realistic for now. Yes, there are many ways to change a bed without getting the patient up; ask the hospice nurses to show the aides if you have to. It's not a big deal, you roll them to one side, put the new bedclothes on halfway, roll them the other way and then finish the job. It's pretty basic....

forbarbara

https://alzconnected.org/discussion/comment/199749#Comment_199749

I’ve had the same experience with hospice - great communication from everyone except the nurse. I figured she was overworked. Hospice social worker was a better communication conduit.

wishing you and your family a peaceful ending - and soon.

mommyandme (m&m)

Yes, it’s not difficult to change sheets while the patient is in bed. Seems like the staff should know how to do that and when? I’m so sorry this is all so challenging and heartbreaking for you and yours.

Quilting brings calm

He’s having a good day today. Eating some peach dessert, drinking a McDonalds shake. Had his first morphine of the morning at 1pm.

AL nurse said she would tell the night staff how to change the sheets without getting him up. She’s already instructed the day time staff on it. They didn’t know before because they aren’t CNAs- just resident assistants.

I could not get the psych resident or the attending to give her some Seroquel. Black box warning, risk of falls, etc etc. All they would do was up her sertraline from 75 mg to 100mg per day.

M1

That's nuts about the seroquel. Is this a geriatric psychiatrist?

Quilting brings calm

https://alzconnected.org/discussion/comment/200001#Comment_200001

Adult psychiatrist clinic affiliated with Southern Illinois University Medical School. Geriatric psychiatrists do practice in that same office, but I don’t think the attending assigned to this resident today specializes in geriatric. Mom’s been going there over two years- I have yet to actually see the attending in person. Only the residents. This is her third one. Almost every doctor in Springfield Illinois is affiliated with one of the 2 local hospitals, Southern Illinois University Clinics or the Springfield clinic. Almost no one is in private practice here. Resident agreed Seroquel was the standard treatment for elderly dementia patients with agitation and high anxiety, he just refused to prescribe it to her. Her recent falls didn’t work in our favor either. All of her doctors in Springfield are affiliated with SIU.

So I guess it’s going to take a worse crisis than this to get it.

Hope5757

@Quilting brings calm

I don’t have anything helpful to add. I’m so sorry for everything you and your family are going through.

But, I did want to thank you for taking the time and effort to faithfully respond to others’ (including mine) posts. I had not realized until now, how challenging your own life is.

M1

I wonder if her PCP or neurologist would prescribe it. Poor practice drives me crazy. If she's a Medicare patient, she is entitled in fact required to see the attending at least once a year and I would not be above reminding them of that......

Quilting brings calm

@M1 - is the once a year attending requirement for every specialty in relationship to the fact that she’s being seen by a resident? She goes back to the psych resident in four weeks, so I will ask about that.

She is seen by her neuropathy attending at every visit after the resident. Just saw them last week. She’s also seen by her PCP annually, her pulmonologist twice annually, a recently added rheumatologist and her memory NP. Rheumatologist was added to try to determine why she has neuropathy when she doesn’t have diabetes. Waste of time because the rheumatologist didn’t see a need to do anything except order blood work and say she doesn’t intend to make any changes in her treatment.

I will ask the memory NP about Seroquel Thursday when I take her for that appointment. It’s going to be an interesting appointment. Mom told the neuropathy resident last week that this year was either 42 or 43. She also thought it’s April. Couldn't correctly remember her wedding date or how long she’d been married. I know the stress is taking a toll on her.

M1

Yes. If they are billing Medicare under the attending's name, she is supposed to see the attending once a year. I would call now and insist on seeing the attending at the next visit.

ButterflyWings

(((QBC))) everything others said and I'm wondering if a hospice doc can't prescribe Seroquel? This makes no sense, as we know, for them to withhold it due to black box warning. 😠 She sounds miserable. *Editing as I guess she's not on hospice -- with recent falls and this progression and agitation I wonder...?

And yes, the weekend or overnight staff at all facilities should always get the "how to change the sheets with someone in the bed" training. (Well, those of us at home too). Easier on them, and your LO. No lifting for the aide, no transferring or weight-bearing (fall risk, confusion issues) required from your LO.

This was one of the many priceless hacks I learned from hospice CNAs when helping another LO through in-home hospice and their final journey a few years ago. Using draw sheets to help shift, re-position, turn a PWD (or stroke victim in her case) made it so easy and saved my arms, wrists and back, as well as my LO's very fragile nearly 100 year-old paper thin skin. Hoping they can find a way to keep the sheets and your LO less wet in the middle of the night too, somehow...

I hope some things get better for you all soon. M1's got great guidance for you. Good luck!

Quilting brings calm

@M1 Since this was the thread in which we talked about Seroquel for my mom….

I didn’t get to talk to the NP in neurology about it. She promptly ushered us out of her office once she found out that step-dad had passed She didn’t feel the appointment would be useful as she didn’t want to give mom an MMSE test. Told us to come back in two months.

M1

Oh that's really frustrating. And not appropriate, if you had other concerns you wanted to discuss! Cookie cutter medicine... Her agenda, not yours!!!!

harshedbuzz

@Quilting brings calm

That's terrible. IN the context of your situation, reliability of a MMSE is less important than taking the time to support her pharmacologically at this time to avoid completely upending her ability to function. It would be far better to medicate her in her usual environment than to turf her to a geri-psych unit.

Do you have other options?

HB

Quilting brings calm

@harshedbuzz

She is actually doing better emotionally now that he has passed. Watching him suffer was hard on her. Her anxiety seems to be reduced. She’s not repeatedly calling me when I’m not there, and she seems to be doing ok when I am. The staff told me yesterday that she’s returning to social activities there. I think they are also giving her more of a pass in terms of her emotions because they feel she has something to be emotional about. We return to the psych resident in three weeks, and I’m going to call the office and mention I heard of an annual requirement to see the attending.

I doubt that I could have gotten the NP to order the Seroquel if I had gotten a chance to ask. She’d have given me the same explanation as she did for not evaluating her with an MMSE—which was: “of course her memory is impaired today, she’s grieving”. In addition, mom’s MMSE score seems to improve every time we go. Similar to your dad’s doctor visits- the NP tells me every time that she’s almost normal. But I know mom wouldn’t be ok to live alone.

harshedbuzz

@Quilting brings calm

I remember you mentioning her presenting well in-office and around testing.

I wonder if the deficits you see would be picked up better by SLUMS. This particular test was better at revealing the issues that prevented him from being as independent as he'd have liked than MMSE or MoCA did.

Are the symptoms you are seeing that you feel warrant Seroquel something you could effectively record or is it more subtle than that? If it's an anxious perseveration, even an audio recording might given the clinician a clearer picture of mom's day-to-day.

I am glad she relieved of witnessing her DH's suffering and getting out a bit.

HB

vtech1951

Estimating time left? Well speaking from experience my MIL has been in hospice care for 18 months, with no end in sight (lucky us) had all the same symptoms your step dad did, now just screams and eats all day.