Still here with Aunt. Finally, got hospice. Had to be downright hateful to get her to quit sabotaging every effort I made to get help. Since my last post/question, she has had more issues. She becomes weaker every day; cognitive function is rapidly declining (now hallucinates regularly & has some serious delusions). She had a stroke a couple weeks ago (blood clot in brain) WITH a second heart attack. It’s now suspected she’s been having mini strokes based on bouts of slurred speech etc. The hospital sent her home after 2 days. They took advantage of her not being in her right mind to get her to consent to blood thinners - she’s had a bad reaction to everyone. So, she was bradycardic the whole time, gave her 1st dose of thinner, & sent her home worse than when she left. I called palliative care & demanded a hospice referral. They came out that night & did an immediate admission. Within 9 hours she was very pale & had a scary amount of blood in her stools. Nurse came out & Dr said no more thinners, ever.
The hospital screwed up or I got a sympathetic nurse. They included all the Dr. summary pages with her discharge papers. Test results, diagnoses etc. 99% of what it contained was never spoken of. I got the standard “she’s stable” lie. Attending cardiologist noted a confer with PCP to agree she’s been changed to end-stage CHF & stage 4 CKD. She now also has hyperglycemia, nodular thyroid disease, and something else that really has no importance. I scheduled a call appointment with PCP to discuss latest issues. She has no visible brain damage from the stroke but there is physical damage. I need to write a book when all this is over 🤦♀️
Hospice professionals are wonderful but very vague with answers to my questions. Same with PCP & I don’t get any answers at all with hospital. I understand that it’s next to impossible to pinpoint when someone will pass. All I need is a general idea so I can properly prepare, not just with final arrangements but mentally & physically. Hospice only told me the next few weeks would be rough, & it will likely get worse. She’s “transitioning”. Nurse mentioned pre-active dying. Didn’t detail what that was or even how things could possibly be worse than now. PCP said if she makes it to Thanksgiving that’s being a little overly optimistic.
I am beyond the point of caregiver burnout. Hospice has been extremely helpful, but even they’re limited. I love her nurses, especially how they don’t fall for her manipulative behaviors & tantrums. The chaplain literally is a godsend especially when you’re a caregiver who has questioned your faith because of this mess. The bereavement counselor has been a wonderful sounding board. No one has poo-poo’d my questions or concerns, but the vagueness drives me nuts.
She is still convinced that all these medical people are lying & there’s nothing wrong with her. She’s still convinced she’s just going to get up & walk - after being completely bedbound for 13 months. She tried to stand again on Monday when we sat her on the side of the bed. She nearly flopped into a puddle on the floor - again. I finally had to be mean & tell her if she continues to do that against all medical advice & when it’s dangerous for us & her, she does it alone. I won’t be a part of it. I told her it’s stupid to think she’s going to magically get better & just be able to stand. And it’s stupid to keep lying & saying all these people have said you have to get out of bed & just walk when someone has always been present for these “discussions” & that’s the opposite of what was said. I told her there is a very fine legal line; I can’t physically restrain her to keep her from getting up, but I also don’t have to help her engage in dangerous activities that could result in me getting charged with something.
Everyone has tiptoed around the time she has & the fact that she’s dying. Am I wrong for not? I outright told her yesterday she is dying & her time is limited.
I can only give you my limited experience with CHF and my mom. When hospice told me they thought she was starting to transition, she passed away a week later. She had been declining steadily, but when she began to "actively" transition, it happened lightning-quick...literally she was status quo when I left her for half an hour to take a shower, and by the time I was done and went back to her, she was gasping for breath, terrified, telling me "something is wrong, I don't feel good". I started her on the comfort meds right then and there, and she lasted 4 days, the last 2 of which she never regained consciousness.
My mom's hospice nurse told me that CHF was one of the hardest illnesses to try and give a time frame, because it often happens as fast as it did to my mom. Like you, while I understood what they were saying, I found it frustrating that they couldn't narrow it down for me, because much like you I wanted some time to prepare. After she passed, I realized that there really would have been any way to successfully "prepare" for her death, it was something I had to get through once it was her time.
Prayers with you (and your Aunt) as you navigate this time.
Is there a reason that you and your family didn't use that opportunity to relocate and tell discharge planning that she lived alone and that there was no one at home to care for her?
Blood thinners are automatic when heart and strokes are involved. Its usually used over a long period of time that causes internal bleeding. I am surprised this came about if she just started using it. Hospice may not allow blood thinners anyway. No life supporting meds once on Hospice, I think thats how its said.
Anyways you are now going through the unknown dying process. Keep in mind she is suffering which is why she is on hospice. I suggest you take some respite time for yourself.to get your mind in a better place. It should be available through hospice. Take care of yourself
You don't have to be mean to deal with her, YOU have to educate yourself about dementia and learn strategies that will help you to have more peaceful and productive interactions with her. She is losing (lost) her ability to work from reason, logic and empathy so you'll exhaust yourself arguing with her.
I'm been out of state for 2 months providing care coverage to my 2 Aunts (ages 100 and 103). The 100-yr old has advanced dementia and many times refuses to cooperate with basics things. I learned to tell her that her doctor (that she had for 35+ years and is in her long-term memory) called and wants her to do this or that so she can feel better. It always works. You will find angles to help you get your Aunt to cooperate -- it just may take some experimenting. You being blunt and truthful is probably not the wisest strategy. Therapeutic fibs may be what gets the job done.
Teepa Snow has many very good videos about dementia and caregiving on YouTube that I found so helpful.
I would ask PCP if she even needs to be seen, before taking her in. Your mom probably is on Medicare Hospice , coverage changes.
just having gone thru this , my mom passed in May. I never told her she was on hospice. It was the special program I had her in. No need to tell her. Your mom is dying. My mom also had hallucinations.
my mom was on hospice 3 months. Once she started falling, and then being unable to stand or pivot , things progressed rather quickly.
talk to hospice about a hospital bed, wheelchair, hoyer lift if these things are not already provided. Hospice should be guiding you on how to physically handle your mom.
Tell yourself mentally…patience… envision the word.. that’s how I dealt with my mom… you got this..