Two topics - How do I weigh her? and What to expect when evaluated for Hospice?

HeyDforDaughter

HI All,

Question No. 1: Mom has been progressively losing weight. I believe maybe 10+ pounds just since April (4 months or so). Now that she is not as mobile or can't stand on her own without assistance or holding onto her walker or holding onto anything, I don't seem to be able to get an accurate count of her weight. At the doctor's (rheumatologist)  recently, she gripped the bar so tightly the weight that registered was way different from the reading from the doctor's (cardiologist) the week before. So my question, how (or where) do I weigh her and toget an accurate reading?

Question No. 2: Ma is currently under palliative care where I am the primary caregiver at home, but because of her current progressive weight loss despite her eating (which is now about 70% with assistance now but she can drink on her own), decrease mobility (cannot walk even with assistance with a cane, she needs a walker or wheelchair), more cognitive decline (asks me on a more regular basis who my mother is?),  a couple of UTIs (which is prone to and can still make it to the bathroom with assistance for a bowel movement) and I also reported that she tends to nap more during the day, her palliative care doctor suggests that although it may be a little early that in any case, Ma should be evaluated for hospice.

What should I expect for a hospice evaluation? She has no other chronic conditions except for hypertension, RA (but no recent flares), and hypothyroidism and her recent labs were good for her age. Would love anyone's thoughts. I understand respite care can be provided under hospice as well as other services (I looked at the medicare website on it) which is fine. But I guess I need help processing the whole notion of hospice. I have had an experience with it with an Aunt who "graduated" from hospice a couple of times before she passed at age 99. 

Thank you in advance.

M1

HeyD, maybe hard to get your head around, but if it's really time for hospice, then weighing her doesn't matter. Neither do cardiology or rheumatology visits. It just matters that shes comfortable and as content as possible. The switch in focus is hard sometimes.

May flowers

I believe for the evaluation if you just tell them about her decline, sleeping, and weight loss they will accept her, especially since the palliative care doctor said it was time. My FIL was about where your mom was when he was accepted 7 months ago but has declined since. 

Our hospice gauges weight loss by measuring his biceps every few weeks. At our recertification, he had not gained or lost weight, but had declined in other ways - needing more meds to control agitation, loss of ability to put weight on his legs, new heart arrhythmia, persistent low BP, and needing more help eating, and more support sitting.

Every hospice is different, but ours provides 5 days of respite per so many months  (at a local nursing home - subject to availability). We have a weekly nurse visit, weekly CNA visit for a bed bath, and a chaplain and social worker which we haven’t really utilized. We were supposed to get a volunteer sitter, but that never materialized. 

The biggest help has the equipment (hospital bed, Geri chair, shower chair, wheelchair, hoyer  lift), supplies, and medications as needed. The hospice pull-ups are awful, but the diapers are okay. The disposable bed pads, barrier cream, no rinse foam, washes, powders, thickening agents, etc., are all good. 

I learned that you can push for some things that Medicare covers (our agency covered some things for facility care and not home care, so we insisted it was something he needed) and if you don’t like a CNA or nurse or case manager, you can request a new one, or request certain people not be assigned to you. At least that has worked for us.

It is a myth that hospice doesn’t treat, they do treat if it is a comfort measure. We’ve had wounds, UTIs, infections, rashes, agitation, depression, etc., all treated. Our hospice doc and nurse are very flexible - for example, they were fine with my wanting to treat his urine retention with a natural supplement rather than medication. They have provided an emergency medicine kit for end of life issues and pain and oxygen for when that time comes. They would continue the meds your mom is on, but I’m not sure they would be doing further labs or tests for those conditions.

Big events won’t be treated - cancer, stroke, heart attack, etc.  You will want to be ready with end of life discussions and paperwork like a DNR. 

I hope this has answered some questions 

MN Chickadee

From what you have described it is probably a good idea to bring hospice in. My mother was in a facility when she entered hospice and they had a special scale to accommodate a wheelchair. But I'm sure the hospice will have a way or metric, you don't need to worry about that.  If she is accepted they will provide you with all the durable equipment she needs (a broda wheel chair, electric hospital bed, and more.) Each hospice varies in other services they offer. Ours had a music therapist. Most have chaplains and social workers. The nurse visits periodically, depending on how far along the patient is. Maybe weekly at first and daily at the end. They will send a bath aide to give her either an actual bath/shower or a sponge bath in bed. With dementia a big criteria they look for is weight loss, so it sounds like the progressive weight loss might qualify her alone. They also look at not being ambulatory, few words, difficulty swallowing, and more. There's no harm in having them come out for a visit. They tend to be kind people who are easy to talk with and understand how difficult this time is for you. You can decide after how you feel about it. And one can always pull their LO off hospice if something comes up you decide you want to treat at the hospital. Most things that comes up in late stage they can help you manage at home to make her comfortable.

HollyBerry

My mom was in AL when she went on hospice. Overall, it was outstanding and we were very grateful for all the services they provided.  The one last thing that was not so great and still sticks with me -- she ended up in the ER two days before she passed away. I don't even remember now why they insisted she go there; it was at the beginning of covid and everyone was a little crazy. Medicare only wants to cover certain services in the ER for a hospice patient so for every thing they wanted to do, hospice had to talk to the ER doc and give permission. I think it was something like a CT that they argued about and I was sure I was going to get stuck with the bill. In the end someone paid for it (not me). All this to say, read the fine print and keep all those papers and ask lots of questions.

mommyandme (m&m)

The doctor may say it’s early for the hospice idea if she/he feels your LO might live longer than six months.  Six months or less is the typical life expectancy hospice uses to admit a patient.  With dementia it’s a bit different, IME.  My mother’s been on hospice services for 1.5 years.  Her decline is steady but very slow.  They may even discharge her if they deem her stable again.  

In any event, definitely bring them in for an evaluation.  If they admit her it doesn’t necessarily mean she’s going to die soon. Whether she continues to decline or not you’ll have them available to help you and your mom going forward.