Mom's PCP (Hospice MD) told me that she is not receiving palliative care... she's on Hospice?

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She also has Early Severe Dementia & Ovarian Cancer


Sorry I can not pick one topic- there is Alz/Dementia, Cancer and Caregiver Burnout. Also, I am confused. I have been Mom's primary (only) caregiver for over a year. At first the reason was that she could not be left alone at night and as time as passed she can not be left alone at all. Everything we have been dealing with appears to be Dementia related. She is either very Late moderate stage or Early Severe Stage . She was diagnosed with Ovarian Cancer last February. Had/has an 8 cm mass on left ovary. She refuses surgery/treatment for the Cancer. (That is fine with me - her body and her choice - she is 80 years old). She said NO to the surgery to 3 different MD's so she voiced her feelings and they were HEARD. 4 months later they ran the CT Scan again... 8 cm mass had not grown or changed or spread. CA 125 was up to 194. Mom has never had any pain with this cancer (except when the Dr's examine her). There were signs of abdominal bloating and early satiety but she had no pain. In May I called the local area council on aging to see what services might be available for her. Very little, as this is a very poor county in a rural area of our State (MI). I mentioned the Ovarian Cancer and was referred to a Palliative Care Coordinator. I called and a person drove here the next day (2 hours one way). He stated that because Mom was not treating her Ovarian Cancer that Medicare considers her "Terminal". She had not been determined to have 6 months or less to live so she did not qualify for Hospice yet but she did qualify for Palliative Care which is paid for through her Medicare Hospice Benefit. Has all the people one has with Hospice, MD, RN, Aide, Social Worker and Chaplin. So since May we have had "Palliative Care". She has continued to progress through her Dementia .... it just gets worse - which is the nature of the disease. Have had zero issues with the Ovarian Cancer. When her Hospice Dr came here December 30 my husband and I talked with him.. we were focused on the Dementia as her condition has gotten much much worse. He told us that he did not feel the Dementia would be the disease that would take her life. He said the Ovarian Cancer will most likely cause her death. He also told us that Mom is on HOSPICE... he explained that she must be determined to at least 50% chance of passing in the next six months for her to qualify for Hospice. He is her Hospice Dr so he is the one making the determination about her qualifying for Hospice.

She has lost the ability to express to me when she is dizzy (has Vertigo for years and has meds for this) and a couple months later she no longer was able to express pain.
We have been dealing with the Dementia changes over this past year. This past November (2015) she started a rapid decline that has yet to level off to a slower pace.

I have Major Depressive Disorder w/Anxiety that I have had for years and had found the correct medication combination. So my situation is "medically managed". Yes taking care of Mom is getting more stressful with each passing day. I have taken respite twice - once for outpatient surgery and once to see my Psychiatrist and Dr's that are in SE MI (Mom lives in our second home in her home town in NE MI). My husband's job is in SE MI and I spent time between both homes. He would come up on the weekends. Now I live here full time. We have not lived together since November of 2014 as I am here with Mom... she had two children, my brother died in 2006 and so I am the only person. She does have relatives here- her brothers have their own health problems- they have come to see her and she doesn't know them. So once they came and she did not know them no one has come back. So her care falls to me... The Hospice RN and Aide come once a week, which I am Thankful for.
I am very confused and I think it is my fault.... yes she does have Ovarian Cancer but her Dementia is the serious problem (at least it's the problem that is obvious). I have been considering different living arrangements for her but I am still in the thinking stage. Hospice MD said there would not be much problem if we wanted to place her in skilled nursing facility- w/Hopsice. I don't know yet except I do know that eventually I WON'T be able to give her the care she is going to need. So far my Mental health is holding up but I have started to have times where I have problems - mostly anxiety- sometimes despair and depression but so far I can stay on top of the depression. I have had to increase meds for anxiety (I am taking the prescribed dose- for a long time I was taking less than prescribed). I've have some minor physical issues but I take them for what they are - signs of being stressed.

Has anyone thought their loved one was on Palliative Care for months and then found out the that they have been on Hospice? Why am I so confused about it. It does make sense but I wish someone from Hospice would have told me when we actually went on Hospice.

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Northwoodsgirl9, Yes, get on the waiting list for the Hospice facility. Those places are not easy to get in to, so take the opening when in comes. We were also informed that dementia itself is not a terminal condition, so our mom did not qualify for Hospice. You need to gather your strength for the storm that is coming-- end stage ovarian cancer-- and I can see it coming soon. Your chances of survival are better if she is at the Hospice home, since they support you as well as her.
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It seems as though the problem is you not Mom. There is little difference between hospice and palliative care, really just someones opinion. So it really would not have changed anything had you been told although that would have been nice.
You are beginning to realize that you simply can not take care of mom 24/7 at home and although Mom does not have pain it is progressing as she is developing bloating which can become a major issue as the cancer progresses. At some point she will become bed bound and require full care which you do not sound as though you could provide aside from your own mental health issues.
Mom has made her decision and it is probably the right one not to seek treatment for the cancer. She would just make the dementia advance and put herself through unpleasant treatments where as now she can have some time where she does not feel too bad. Mom needs you to be her advocate which you can do but the full time care must be done by others. If there is money for full time caregivers she can remain at home and you can stay or not whatever you feel able to do. If you know Mom's wishes go ahead and set them in motion. It would be far better to settle her into skilled nursing care while she still has some awareness of events around her. That way she will not feel she has been thrust into somewhere strange and become totally disorientated. Read all you can about dementia and be prepared to deal with some of the uglier aspects. Above all take care of yourself and don't make promises to Mom that you can not keep. That will lead to a lot of anxiety and guilt, otherwise you have no reason to feel guilty so don't let those thoughts enter your mind. Blessings.
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Thanks Eyerishlass what you say makes perfect sense..
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Many times the terms ''palliative care'' and ''hospice" are used interchangeably and the lines dividing them can be fuzzy. If someone is in a hospital and is receiving hospice-like services it can be called palliative care because the hospital staff doesn't provide hospice whereas if the services are being received at home it can be called hospice. Also, palliative care doesn't really have a time limit whereas someone can go on hospice if a Dr. determines that the person has about 6 months or less to live. So while your mom might have started out on palliative care she could have been deemed eligible for hospice at some point and since these terms are often used interchangeably no one brought it up to you.

But you're right in expecting to know all of the information when it comes to your mom's care.
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