Well, I've been a member of WomenHeart for awhile now and just discovered you this morning. My mom has been in hospice care for almost one full year. She was diagnosed with ovarian cancer more than three years ago, had chemo and was in remission for two years, then had a reoccurrence last fall. She is 85 and very debilitated; her cancer had also metastasized and no new chemo was recommended. Thus, she entered a nursing home with added hospice care and was given by her oncologist "8 to 12 weeks."
Yeah.
When her "expiration date" passed (as she put it), and the following days and months as well, she just got angrier and angrier. She hates the nursing home.
We helped maintain her in her own home as long as we could. We had care come to her, but she fired everyone for a variety of reasons. She's a total control freak.
Here's my question for y'all: When a patient "falls through the cracks," for whatever reasons, what do you do? The staff at the nursing home and the hospice staff are wonderful to my Mom. They do their best. They control her pain as best as she allows (she won't take all of the recommended meds because she doesn't want to be "goofy", no matter how we try to encourage her to do so). They have offered psychological services (which she refuses), so they simply spend time with her, talking and listening. Still, everyone seems somewhat nonplussed as to how to proceed.
Her cognitive functions are rapidly deteriorating, according to the hospice nurse a result of the cancer most likely entering her brain. Mom is not only angry, she is paranoid. She is very confused.
My sister and I are her powers-of-attorney and primary caregivers. I live out-of-town, but see her as often as I can.
Recently, I spent a week trying to get mom's condo ready for sale. After all these months, she's running out of money. The costs of added care (she had a hospice aide whom she loved and when the aide left the service, we hired her privately to come in for several hours a week), a private room, and extra food (because she doesn't like the hospice food) have mounted up. We held off on the sale because frankly we figured doing it while she was alive would be very hard for a woman who had been fiercely independent for her whole life. But her unexpected longevity has made it impossible to keep.
We took her back to her condo for one last visit, to go through some things and sit on her porch and smoke a few cigarettes. We did not want her involved in the clean-out for obvious reasons.
Now, she isn't speaking to me because I either "stole" her stuff, or "gave away" her stuff. She is completely focused on her "stuff". Besides being a control freak, she is OCD, exacerbated by her worsening condition.
She has become extremely abusive, there is no "filter" left.
Mom's hospice nurse has also been great to my sister and I, reminding us that this is "no longer our mother." I keep telling myself that. It helps.
Still, as I look back over these past couple of years, especially this past year, it has been simply exhausting. Last February, I had a stent implanted after a cardiac cath and suffered a small stroke after that which has left me with some equilibrium and visual problems. I am trying to reduce the stress in my life. After a particularly trying time with my mom, my sister came to my aid, reminding mom that I had health issues of my own. Mom's response: "I have to think about myself now."
My sister and I wish we could make mom's end more peaceful. We wish we could just talk to her and spend "good" time with her, without anger and recriminations. It is terrible to think this. It is terrible to write this: I wish this was over.
Thank you for allowing me to vent this. If anyone has any advice, or knows of any support groups in the San Antonio area, I would greatly appreciate your assistance.