When to Start Hospice with ALZ

Malka

I am the DD of 93 y/o male with Alz diagnosed in 2018. The last 4 months he has deteriorated greatly. He doesn't want to eat, even sweets. He becomes constipated a lot because he doesn't drink enough and he doesn't want to walk. He has been sleeping more and more. Last Monday, his aide couldn't wake him up and and when he opened his eyes he couldn't move his arms and legs. She was able to change him and the sheets by rolling him, but she couldn't get him up. He slept the whole day. The next day he got up for an hour and then went back to bed, he didn't sleep the whole time but didn't watch tv or do anything else. He drank some water spiked with electrolytes. Third day was better, and so on.

These episodes are happening more and more. I had called the dr.  to ask about constipation and she suggested I have a hospice evaluation. Is this too early? I believe in DNR's and PAS, but I am very nervous about it. I told my dad and asked him if he would want to be kept alive by feeding tube or ventilator (I had to explain simply) and he said no, that he wants to go to my mother. His aide told me it's too early, but I read they supply some help.

Am I doing this too early is basically the question.

toolbeltexpert

Malka welcome to the forum nobody wants to join,but the best place for compassionate conversation. My dw isn't that far along, but I have been reading lots of posts regarding this subject,, and from what you've described I would say it is definitely time. I hope I don't come across as unsympathetic, these decisions are hard to make, but your a good caregiver for seeking out good counsel, I am sure others will come in with first hand experiences.

May flowers

Based on your description, it is definitely not too early. My FIL is on hospice and is still eating, drinking, trying to walk and not sleeping all day (but he has had days like you describe) Some people have been on hospice for over a year. They provide support, equipment, comfort care and supplies.

It is important to know that you can always come off hospice if you change your mind. Some people go off when they want hospital service for a specific situation and go back on after. But most situations, as I understand it, hospice can handle. My FIL was just treated for a UTI, because that is a quality of life/comfort measure, but he is DNR, no tube feeding when it comes to that.

Jo C.

Dear Malka, a very warm welcome to you.  The answer to your question is; no, it is not too early.  In fact your father is very well qualified for Hospice and probably has been for awhile.  The aide is incorrect in her understanding; she may also be worried about losing her job. Hospice does NOT provide ongoing care such as you have, it is only for small bits of time and will augment the care you and the aide provide.

Hospice will come to assess him within a day after receiving a call and sometimes the same day.  If accepted onto service, and it appears he would be, any required equipment for his care will be out the same day and Hospice pays for it. That includes a hospital bed, special mattress to avoid skin breakdown if necessary, a guerney chair or wheelchair as appropriate, a patient lift if necessary, etc.  All of it paid for by Hospice.

You will have a dedicated RN who will see him at intervals usually starting a couple times a week, and a licensed nurse available by phone 24 hours a day for urgent matters; you will also have a Social Worker, and a bath aide that will come two to three times a week to assist. The bath aide will bathe and do hygiene, but they are not there for more than an hour or so each time.  If you wish, you can also have a Chaplain make visits.  You will also be provided with a medication care kit which can be very helpful.

A doctor's order is needed to start Hospice, but you do not need an order to contact a Hospice and have them come out and assess your father.  Hospice can call and get a doctor's order to start service themselves.

As an RN and a caregiver of a LO with dementia, I prefer larger Hospice entities rather than the small Mom and Pop ones. They are usually better staffed, more available and usually smoother to work with.

Personally, I like to look up what Hospice entities are near, and I call three of them if there are three in my service area.  I do not put in an order to have my LO assessed right away; I want to screen the Hospice first. 

If you make such calls, do not direct your questions to the nice person answering the phone, instead say you wish to speak to the RN supervisor.  If the nice person asks why, just say it is, "personal."  That will be respected.

When speaking to the supervisors, you can ask about their philosophy of care, how they manage certain things and discuss your father with them.  After doing this, you will know which one seems to be the best fit for you and then ask for an assessment for service.

I find Hospices by using Google for my area.  Sometimes a doctor will have a preference, but one must make sure it is one that is Medicare Certified and it is not a small Mom and Pop.  Sometimes Hospital Case Management Departments can tell you which Hospices are in the area that they refer to.

Hospice can care for a LO in the home and they can also follow a patient if they are in a nursing home, that is a blessing.  Please do not hesitate to call Hospice; by your writing, it seems it needs to be done soon.
 

Let us know how you are, we will be thinking of you,

J.

May flowers

Just to follow up to Jo’s post, we only have a nurse 1 day a week, and CNA one day a week and no volunteer respite provider. I think that hospices now are short staffed. But they are available by phone 24/7 and will send a nurse out whoever needed. The doctor is very responsive in calling in meds as needed as well. Jo is right, they send out equipment fast! We got an automatic inflating bed topper that is great for bed sores as well.

It may depend on the needs your LO has as to how many visits you get. You likely will get more than my LO.  

Malka

Thank you so much for your reply.

Malka

Thank you so much for your kind answers. I have a meeting tomorrow with the Hospice Care service the doctor recommended.

 After reading Jo C.'s post, I wonder if I should call the other hospitals that have hospice care in my area and interview them.  Since you can go off the hospice care, is it safe to assume if you leave one service and go to another if the care is not good?

Thank you,

May flowers

Yes, you can switch hospice providers. We almost did that when we were having issues with our case manager. But they took care of it and it’s been fine since.

terei

NO it is never ‘too early’ to have an assessment.  If he qualifies for hospice, then he should be on it.   I cannot think of a single reason not to use hospice if they approve him, unless you want to use extreme measures to keep him alive.

Malka

I am adding this question not knowing if it should be a separate subject. 

I do not plan on telling anyone in my family that I am doing this. I am his sole caregiver, and have his POA and Advanced Directive. I have a sister who has advanced MS.   He does have a brother who sees him often and grandchildren  and great grandchildren who do not see him often since the pandemic.  But I don’t feel my father is dying soon and that there is time for me to tell them. 

I would and have always been honest with them about his condition, but I always pick when to give out information. I would only tell them when he would be admitted to the the hospital. They don’t know about all the ER runs. Not necessary to upset them. 

Thanks. 

Jo C.

Hello Malta, you do not have to have a hospital based Hospice.  There are also very good free standing Hospices, some of them large.  If you find one that is not for profit, that too is a positive.  Not too many are not for profit these days.

As for being able to change Hospice providers if you wish - yes that can be done within a certain framework:

Hospice has what they call "Certification Periods," that is, the amount of time your LO is certified for services before they must be recertified.   The first and second Cert Periods are each for 90 days, (total 180 days).  After that, recerts are done every 60 days unlimited as long as there is a need for Hospice.

If you wish to change Hospice providers, you can do so ONCE in any Certification Period. So; one change in the first 90 days; another in the second 90 days; and once in any of the 60 day recert periods.

As for how often the aide and RN come to visit, that will depend on differing Hospices, their capabilities and patients needs.  We have Members who are receiving the bath aide two and three times a week and the RN adjusts per patient need; some visit once or twice a week; other need several times a week and if needs are very heavy and if death is imminent, sometimes a visit will be made each day; but that is not the most common.

J.

BassetHoundAnn

Malka wrote:

I am adding this question not knowing if it should be a separate subject. 

I do not plan on telling anyone in my family that I am doing this. I am his sole caregiver, and have his POA and Advanced Directive. I have a sister who has advanced MS.   He does have a brother who sees him often and grandchildren  and great grandchildren who do not see him often since the pandemic.  But I don’t feel my father is dying soon and that there is time for me to tell them. 

I would and have always been honest with them about his condition, but I always pick when to give out information. I would only tell them when he would be admitted to the the hospital. They don’t know about all the ER runs. Not necessary to upset them. 

Thanks. 

Hi, Malka. A warm welcome to you. I am in a similar position as you. My mom just started hospice. She's in a similar condition to your father. I don't plan to tell any family that she's receiving hospice care. Not until death is imminent or unless she's moved to a hospice facility. Like you I'm careful about what information I share. Haven't told anyone about all the ER runs. Several relatives are in their 90s and get very upset when they learn a relative has been started on hospice. I don't want to put them through that pain earlier than necessary. The family has a strong grapevine and I'm careful about what might be shared with the sensitive souls. 

My mom is in a memory care. I've been surprised at all the additional help hospice will be providing her there. And I greatly appreciate the help and advice with medication and other care issues. The MC nurses tell me that they try to get hospice on board as early as possible because so many services are offered.  

mommyandme (m&m)

Please Please call hospice and have him evaluated.  Don’t wait another day.  It is NOT a death sentence and a LO doesn’t need to be knocking at death’s door to receive the added support.