Other medical issue

Colt99

 I don’t want to get too far ahead of the situation but I anticipate the medical community will be recommending tests and procedures. 

DW is well into stage 6 – needs regular assistance now with toileting. I have noticed her stool color is pale grey for the last couple of months.

In 2019 a cat scan found incidental mass and dilated bile duct in pancreas. Followed up and confirmed by MRI. Sent to Huntsman cancer institute and doctor confirmed findings but determined lesion size and location only required monitoring. No symptoms at that time.

One year follow up MRI in 2020 - commented on some mild intrahepatic duct dilation/stricturing. Still no symptoms. No medical follow-up since 2020 but dementia symptoms progress.

 Currently, the stool color change is only symptom of bile duct problem but jaundice, itching and pain are likely to follow. I don’t even want to bring it up with her primary because of the test/procedure path they will want to put her on and I don’t think she will tolerate even an MRI anymore. I am concerned if they can manage her symptoms if/when they arise.  Any help or advise appreciated.

Thanks

M1

Colt, you are completely correct about pasty/pale stools being a sign of biliary obstruction.  But you do NOT have to do anything about it.  If she hasn't had a hospice evaluation yet, I would strongly consider it, especially if/when she gets symptomatic.  You are not obligated to do ANY tests.  If she gets really, really jaundiced and/or really, really uncomfortable, sometimes they will put an external drain in the bile duct for comfort's sake to relieve the jaundice and the associated itching that can go with it.  But you don't even have to consider that. 

You can call for a Hospice evaluation yourself, you do not have to have a doctor's referral for it.  Just so you know.

I'm sorry, none of this is easy.  My partner has a lymphoma that has long been quiescent but at some point I almost--and make that a big almost---wish it would take her so that she doesn't have to suffer the long indignities of dementia progression.

Jo C.

Hello Colt, I am sorry for what is happening and can understand your concern.   There is another option which can be very effective and very supportive.

M1 has mentioned Hospice, and I agree that would be an option that can bring much to both your wife and yourself.

One does not need a doctor to contact a Hospice to request an evaluation for admission to their service; you can do that yourself; a little more about that later.  An order is needed to actually start Hospice service, but the Hospice nurse can contact the physician and do that for you.

The symptoms you mention are amongst the significant discomforts of biliary obstruction; Hospice can manage those. Their goal is to bring comfort and best quality of life for the patient.  They also actively support the family.   Hospice will also provide ALL necessary equipment at no cost to the patient or family.  This includes hospital bed, lifts, wheelchairs, overbed tables, etc.

Hospice will provide an RN, a bath aide two to three times a week, a Social Worker, Chaplain if you wish, and often has volunteers to assist in various ways.  Hospice is not only for the patient, they are also there for support of the family and there is 24 hour contact to an RN should a problem or concern arise.

You can use Google to find the Hospice entities near you.   You can call a Hospice or even two or three if you wish to compare and ask the nice person answering the phone to be transferred to the Nursing Supervisor.  You can discuss  their services as well as your wife's condition.  You can then engage the one you feel is your best fit.  Larger Hospice entities are usually best in the delivery of services versus the tiny Mom and Pop entities.

One can also call the Discharge Planning (sometimes called Case Management) or Social Work Department at your local med center and ask which Hospice they use for their patients.

When you contact Hospice and request they assess your wife for admission, they will send out an RN to do a very lengthy intake; this is required by Medicare law.  That person will not be the one to do anything physical nor will that person be your nurse. If your wife is accepted into Hospice, and I see no reason why she should not be, the RN will contact the physician to obtain an order to begin service and it starts the same day.

Hospice will, within the same day or by the next day, have everything in place. If any equipment is needed, it will be provided in that same time line.  You will be given a kit with medications that may be helpful in different situations; your RN will be there, and the bath aide will begin service soon  thereafter, and you will see your Social Worker and if you wish, a Chaplain.

There is much positive with Hospice; however, if you choose to do so, you can stop service at any time. None of this will be at cost to you.

This is a difficult time and it is fraught not only with much concern regarding physical issues but it is also a time that is very caught up in emotions; the support of Hospice can bring release and comfort  and much needed support to both patient and family.

Let us know how you are and how things are going; we will be thinking of you; we truly do care.

J.

Colt99

 M1 and Joe C. I want to thank both of you for your responses on both a personal and professional level.  You have given me much (more) to consider. Recently I have been actively evaluating MC facilities and now will focus on hospice care. Yes, I do realize hospice services can be provide in a MC facility.

This disease includes so many constant changes. We are currently at one of those plateaus where I feel we could get along and live like this – but I know dementia won’t give us that option. Now just the mention of hospice brings the notion of an end phase to mind that I am not ready to consider. But should I be sad or thankful. What crazy mixed up thoughts.

Jo C.

Colt; while Hospice is supposed to be for end of life in six months; that is not the actuality.  We have Members here whose Loved Ones (LOs) have been on Hospice far longer; some up to a year and astonishingly, some who have even been on service for two years.

NOTE:  As you are aware, your wife's physical condition will continue to deteriorate; she is also far along in her dementia.  It may well be due to her physical issues that she may not be a candidate for Memory Care in many if not most such settings.  It may be that a NH admission will be what care facilities may feel is considered the most appropriate setting for her as most MCs are not staffed nor ready to accommodate such a medical issue due to the care and attention she would need.   Many MCs are licensed as an "assisted living" models, and she is not going to be able to fit such a category on admission; most MCs are fairly strict in their model accepting new admissions and as said, staff accordingly for the more independent and active admission and are not geared nor set up for Hospice end of life right from the start.  If you find differently, then that is a plus for you.  However; do know that when things get tough, it is not unusual for MCs to state the patient is too high an acuity and needs to transfer to a NH level of care which is adequately staffed and trained/educated for such patients. 

If you do not  wish for any further tests or grueling treatment to be done, then it appears you wish for her to have as much comfort as possible. This then, leads us to the Hospice path once again.  They do not rush a person's death; it is about keeping a person as comfortable and well as can be in life when there is a condition likely to lead to death.  You would not be consigning her to death by doing this. If she is now a "do not resuscitate," you have taken  the step that ensures she will not suffer needlessly when her body has reached the end of its ability to continue on.

No one will judge you for making a decision for Hospice if and when you are ready to make such a decision.   It is an ensurance of comfort and support whether at home; at home with a private aide; or in a NH or other setting.

My own LO was in a NH setting; Hospice was inititiated.  I was SO glad  they were. They were extra eyes, extra hands, extra ears and advocated and oversaw the care in the facility.  They helped so much and also, if there was an issue or something I felt needed to be addressed; they took care of it right away.  They also continued to write orders for pain management and management of shortness of breath, nausea and vomiting and even treated pneumonia when it arose.   Yes; they do treat pneumonia unless death is in active mode, and also treat other conditions. 

This is all communicated to you not only as someone who has used Hospice, but I am also an RN who has been Administrator of Patient Care Managment; M1 is a physcian.  In any case I am not insisting that this is the only option; this must all be up to you for what you feel is needed.  In time, you will be able to process this and decide what is best for your wife by being sustainable and of most service.   You are an excellent advocate for your dear wife and she is blessed  to have you, her beloved husband by her side with your love, deep caring and concern for her very well-being.

Let us know how you are doing; you are important in all of this too. 

Jo