questions about hospice(1)

Elshack

I am having a difficult time taking care of my 92 yr old DH who has moderate dementia. He also has had Crohn's disease for 45 years and is on medication. Tonight he had a bathroom blowout all over the bathroom floor, himself, overflowing Depends etc. I put him in the shower and before he got into the shower he had another explosive diarrhea  and sprayed poop on the walls and on the floor. Massive cleanup on my part. I am 82 and have fibromyalgia and wet macular degeneration which requires injections every 3 mo.

I am wondering if I should get an evaluation from Hospice? I need help with showering him too. Has anyone had Hospice help for someone who has bathroom problems? He has lost 15 lbs over the past few months and the nurse practitioner suggested Ensure. These EXTREME diarrhea attacks have happened since I have been giving him 2 Ensure per day and I wonder if anyone here has also found Ensure causes diarrhea. Thanks for any help you can give me. He has problems with diarrhea but this was extreme. 

jmlarue

My son suffers with Crohn's. He went through 5 surgeries because of it. Diarrhea is his new normal. The docs have had him on a biologic (Humira) for 6 months, but recently stopped it because it wasn't helping. He takes anti-diarrheal pills before every meal, which do help a little to tamp down the uncontrollable explosive episodes. This would be a real mess if he also suffered dementia. I'm quite sure his spouse would need to place him in a nursing facility. It's just too impossible to control and she's half the size of my son. No way could she wrestle a 250 lb. man.

Absolutely ask for a hospice consult. The weight loss alone should be enough to make him qualify. They will be able to assign an aid to provide showers, but it certainly won't be every day. Meantime, I think you need to place an urgent call to his gastro doc to see if there is something he can prescribe to help. He/She would also be able to tell you if the Ensure is making things worse. Be sure to impress upon the appointment setter that this is an urgent issue and that your husband has dementia. If they give you the run-around about wanting a colonoscopy first, I would be hesitant to agree to that. It's a miserable test that requires laxatives to clear his bowels before the test and often that just causes more inflammation in the gut.

Joydean

I have Crohn’s disease and yes the ensure can trigger it.  You could try boost its not as bad as the ensure, for me anyway. . Hope that helps a little.

Jeff86

I don’t have any light to shed on the Crohn’s issues but my recent experience with hospice is that significant weight loss in and of itself was not enough to qualify my DW for hospice.  She has lost 19 pounds over the past 8 months; the hospice nurse said my DW will qualify if/when she stops eating or becomes non-ambulatory.  

YMMV.

dayn2nite2

I don’t even have IBS and Ensure, Glucerna and Boost are triggers for diarrhea.

Lose the Ensure.  Contact hospice for an evaluation.  You’re already aware he’s far along and unfortunately weight loss is a part of it.

Jo C.

You have already heard the input regarding the Ensure, I can well imagine you will not be taking any more of that out of the cupboard any time soon.  I am so sorry for what happened and can only imagine the outcome.

Hospices are wonderful support; and each Hospice is different from another in how beneficent they are, some are much more leniant than others in accepting patients onto their service.

You do not need to have a doctor refer you to a Hospice. You can look up several Hospices in your area to get their contact information.  In my personal and professional experience, the larger Hospices were much better with services than were the smaller Mom and Pop ones. If you are accepted by a Hospice for their service, they will need a doctor's order but they will get that order; you need not be involved in that.

What I usually did when choosing a Hospice was to call two or three of them.  When reaching them, I did NOT talk to the nice person answering the phone to gain information.  Instead, I asked to speak to the nursing supervisor.  If the nice person answering the phone wanted to know why and if it pertained to a patient on their service,, I simply responded that it was a confidential matter and that was always honored.

When getting the Supervising RN on the phone, I was able to ask about their services, their philosphy of care . . . and then present my LOs information - all of it - with diagnoses for the dementia as well as the other healthcare issues from weight loss, to hypertension, heart disease, and to all other conditions such as your LOs Crohn's Disease.

By speaking to more than one Hospice if you have more in your area, you will be able to feel which one may be the best fit.

It is also good to include your own health issues but do not focus on them; just provide the information.   If they feel the patient will fit their criteria for service, they will send out an RN to do an intake assessment which is a very lengthy form demanded by Medicare to initiate service.

If accepted, you will find equipment delivered on the same day.  If not accepted by one Hospice, then move forward and have another come out to assess; as mentioned above, some are more leniant than others.

Sadly, they will not have a daily aide to be with you, but they can help you find someone if you wish to pay privately for some assistance.  Hospice will however, provide you with an RN who will see your  LO at intervals, usually once a week or more depending on condition; they will provide you a Social Worker as well as a care aide to bathe and groom the patient as well as doing light housework in the patient area only; the aide comes out two to three times a week depending on need. A Chaplain will also be available if you wish. All necessary equipment is provided by Hospice at no cost to the patient.

I so hope you will be able to gain the support of Hospice; part of their job is to also support the family caregiver and that is always a very good thing and a big help.

Let us know how it goes, we send best wishes for all to go well,

J.

Elshack

This is my update to my original post. The local hospice did require a Dr approval which the neurologist gave. The internist wanted to see DH before he would approve so I was glad the neurologist gave the OK since it is very difficult to take DH in the car to an appt. Neurologist has not seen DH in a year and a half but had had phone conversation with me a few weeks ago.

The hospice nurse came out today and she talked via phone to the hospice Dr. DH is supposedly at 6.5 level and Hospice begins at 7 level. She recommended Imodium for the diarrhea. The good part is the ground work has been laid and a Nurse practitioner will check DH every 2 weeks and check vitals, muscle mass etc. 

I feel better that they will keep on top of the situation and when he progresses to level 7 there will be more help. The nurse agreed with me that I will no longer take him to the eye Dr or the dentist etc. Also I am cutting off all the vitamins that he takes as he is having trouble swallowing pills and at this stage what good would vitamins do anyway? I don't want to do anything that will prolong his life. He is not in any pain.

Joydean

That’s good news, as you said they are in the loop! It’s got to be a relief just knowing someone will be coming in to at least check on him. Best of luck to you!