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When is it time for hospice care vs nursing home care
joymrt5
Posted: Friday, December 6, 2019 12:06 PM
Joined: 8/30/2016
Posts: 5


My mom has been steadily declining over the past several months.  She has her good days and bad days but lately it seems the bad days are more frequent.  I was able to take her to TX to see my sister's family at Thanksgiving and was able to really observe her behavior.  What I observed was that she is barely eating or drinking anything and she is a lot more impaired than I was able observe during my visits with her in the nursing home.  I received a call today from the NP at the nursing home informing me that at her monthly weigh in this week her weight had dropped by 12 pounds where it had been stable prior to this month.  They are wanting to put her on a dietary supplement drink to try and boost her appetite but I really feel she has just given up and is tired.  I really like the NP that cares for my mom but sometimes wonder if she really has mom's best interest in mind when making decisions about her care.  If mom has decided or the disease has progressed to the point she doesn't know she's hungry or thirsty then I don't feel we should force her.  She's 84 years old after all!  She already gets upset when they make her take her meds and drink Pedialyte because she's constantly getting dehydrated from not drinking enough fluids so I don't see her voluntarily taking the dietary supplement drink.  So my question is when is it time to consult hospice and just leave her alone and let her be comfortable?  Please don't think I'm a terrible person because I'm sure it sounds like I'm just waiting on her to pass but I really just want her to be at peace and happy for whatever time she may have left.  I'd appreciate any input you all may have.

Thanks!!


Rescue mom
Posted: Friday, December 6, 2019 12:13 PM
Joined: 10/12/2018
Posts: 1277


Hospice is all about having them be comfortable. They do not try to get you to do more “medical” things, they are about keeping the patient comfortable through the end of life, and helping their families. It sounds like you and Hospice, at least those IME, would be a good fit.

But I always advise people to call their Hospice and ask/talk to them. A call or “interview” costs nothing but maybe time, and they can do so much to help ease the patients path, along with counseling for family if wanted.

Everybody IME said hospice was invaluable. They found ways to help increase their LOs Comfort.


dw743
Posted: Friday, December 6, 2019 12:48 PM
Joined: 11/13/2018
Posts: 125


My DW is in MC and on Hospice. Best move I made was getting Hospice onboard.

Give them a call, and they will have their nurse or someone come out and see if she is covered. I fully agree with Rescue Mom's post.

They respond very fast to needs that come up. They can move in hospital bed, wheel chair, supply diapers, etc.  They also have aid to give baths twice a week. Helps take some of the load off your shoulders.

 I'd call today. Please keep us advised on how it works out for you.

 


terei
Posted: Friday, December 6, 2019 1:05 PM
Joined: 5/16/2017
Posts: 488


This is not an either/or situation.  Your mom will remain being cared for by the nursing home but Hospice will come in with additional services + help.

When my mom stopped feeding herself + refused meds, we stopped them.  At the end of life, with dementia, what is the point of ‘boosting her appetite’?  To drag out her decline as long as possible for payment to the NH?

when my mom could not feed herself (and could not be kept awake in a wheelchair when taken to meals) resisted taking meds,  we refused to have her hand fed.  The MC was not happy, but hospice backed me up.  Within a couple days of not eating, she was bed bound + died about 10 days later.  She had wanted to be with Dad for a long time + I knew what her wishes were + demanded that they be followed.

I was with her 24/7 during that time with help from the MC staff as well as Hospice.  She had been with Hospice for several months already with those services.

Dont wait to call hospice in.  The weight loss alone, with dementia will no doubt qualify her. They will be very helpful.  


jfkoc
Posted: Friday, December 6, 2019 2:03 PM
Joined: 12/4/2011
Posts: 17689


I have always been one to get all the help, hands on, eyes on possible. Go ahead and interview several Hospices. Yes, they all must provide the minimum services but they do differ.
SunnyBeBe
Posted: Friday, December 6, 2019 4:14 PM
Joined: 10/9/2014
Posts: 828


I agree about contacting Hospice. My LO who is End stage, in MC is on Hospice. She has lost a lot of weight despite eating well.  So, I'm not sure if the supplement would really help. Sometimes the body does not utilize the nutrients very well.  You can discuss your concerns with them.
Goodtogo
Posted: Friday, December 6, 2019 8:24 PM
Joined: 11/27/2017
Posts: 43


I had enlisted palliative care first and then hospice.  Palliative care did not provide all the equipment and supplies, but did provide another set of eyes to keeping my LO comfortable.   We later transitioned to hospice care when needed.  I would ask if palliative care is available or ask for an evaluation.  The hospice service should also provide support for the family.  
 

demiscared
Posted: Friday, December 6, 2019 10:53 PM
Joined: 8/26/2015
Posts: 60


Hospice has been invaluable for my DH and our family.   They are right there at every turn, more hands can only be better.   They will be you and your families advocate in a facility.  They know the ropes and are so helpful.
MN Chickadee
Posted: Saturday, December 7, 2019 10:26 AM
Joined: 9/7/2014
Posts: 931


Not a terrible person at all, just someone who is trying to do their best for their mom and help her land this thing gracefully and be released from a horrible disease. 

It sounds like hospice may be appropriate. They may be very supportive for her and for you and your family. It doesn't hurt to have a consult; they will tell you if she qualifies. And even if she doesn't now, she may in a few weeks or months and you can do another consult. Also, most areas have multiple hospice agencies and they may differ in when they accept someone. You can consult with more than one and find the right fit. You don't need a doctor's orders, and any normal nursing home worth a darn should be used to having hospice come in. At my mom's memory care facility, on any given day one or multiple people are on hospice. The hospice nurses and staff come in all the time and work in tandem with the family and MC staff. 


harshedbuzz
Posted: Saturday, December 7, 2019 10:43 AM
Joined: 3/6/2017
Posts: 1929


I would bring in hospice for a consult; the weight loss is worrisome. 

That said, travel in the late stages of dementia can be very disruptive so it's possible her increase in "bad days" is related to a break in routine and change of venue. 

I will say both my MIL (not a PWD) and my aunt (mixed dementia) would stop eating/drinking for up to a week at a time and then resume again. It was hard emotionally because you never knew if it was the last time.
Rich_B
Posted: Sunday, December 8, 2019 12:39 AM
Joined: 2/15/2019
Posts: 4


Hey joymrt5,
Everything that dw743, Rescue Mom, demiscared said is right on. Hospice care was an immeasurable blessing to my mom before the disease finally took her last February. As her caregiver, I had hospice coming to our home and don't want to imagine how hard it would have been without those angels. I only wish we would have brought hospice in earlier for both our sakes. You ARE NOT a terrible person, your concern for her to be at peace and comfortable demonstrates just the opposite. Hospice is the best way to achieve those things, in my opinion. Make the call!

King Boo
Posted: Sunday, December 8, 2019 9:15 AM
Joined: 1/9/2012
Posts: 3138


My LO adored his supplement, chocolate Ensure.  As a matter of fact, they had to lock it away and not let him have on demand access to it, he guzzled it.   Even at a point when his oral intake was way down.

Offering a nutritional supplement is a long, long, way from extreme or intrusive measures.  Give it a shot!

And - find out how hospice works in your state/facility.  You may be able to interview agencies, even ahead of need, so you are prepared.  You are correct that hospice is designed for the longer term window of 6 months.  There are qualifying factors that are determined BY THE HOSPICE NURSE - not her current attendings (unless they are very, very savy, insist on a hospice professional evaluation)

The eating/drinking thing starts by coming and going, often.  She may be easily stimulable to eat or drink some days, and others, not at all.  


i2i
Posted: Sunday, December 8, 2019 12:36 PM
Joined: 8/12/2017
Posts: 227


I'm with King Boo and others.  I would start now interviewing the hospice agencies in your mother's area.  While most are excellent, they are not all created equal.  End of life dementia care requires an additional skill set and dedication than regular end of life care.  

For example, I told each hospice agency I interviewed that I did not want my father directly told that he was being put on hospice.  That would have only caused him confusion and distress.  One nonprofit that I liked and which has a good reputation said, Well eventually someone is likely to let it slip that he is on hospice (possible), so better that he is told up front so he will not be upset later if/when it happens (well-intended, but they did not take into account how poor his recall was).  The one I chose said, Even if we tell him up front, it will be like the first time if he should hear it again, so why tell him if we can work around that?

Ask people at each hospice agency what their experience level, training and treatment orientation are for caring for PWD during this phase of life.  Yes you can change agencies if you don't like the first one you choose, but much better to get it right the first time.  IME, the nonprofits were superior to the for-profit agency.  Ask the nurses at your mother's facility, also I think important the person at the front desk signing people in, how often the hospice nurse from each agency stops in to check on things even between their scheduled visits.


 
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