So, It's been a really long time since I've posted here. I'll try to summarize. I am caring for my Mom with Alzheimer's, she lives 5 minutes away at a MC Home, plus I have another organization that helps me manage her care, decipher doctor visits, help with doctor visits etc. So within the last year Mom went from working out at the gym 3 times a week with a trainer and outings several days a week to barely walking with assistance from a rollator and having trouble un wrapping her fork and knife from the napkin at dinner. She has had a fairly steady decline both physically and cognitively. (They treated her for high ammonia levels, but that has not re-occurred and in fact recent blood work results were good across the board.)
I visited with her on Saturday during lunch and she seemed a little more confused, she kept folding and folding her napkin and I had to cut her food for her. Sunday evening they said she had thrown up several times and sent her off to the ER to check for GI bleeding. The ER was NOT fun, and very traumatic, they ran all sorts of tests and everything was fine, sent her back to the MC. Yesterday she barely ate and today she stayed in bed all day, only sitting up and drinking some soda when I showed up this evening.
She hasn't had her medicine since Sunday, she was very vacant and non verbal today, almost like a stroke maybe, I really don't know what's going on. However, they have decided the next step is to call in Hospice to help out, get her a hospital bed, and see what other measures we can do for her comfort. No one is suggesting this is end of life, but if she's not eating or drinking and can't take her medicine, where does that leave us?
I am now in unchartered waters and have no idea what to expect. It's quite depressing to see her so confused and scared. She hates when anyone touches her, wimpers like she is in pain, but is unable to really communicate what might be hurting.
Anyway, thanks for reading. Feel free to share your experiences or advice.
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If you're uncertain as to whether your mother is getting end of life care, don't agree to anything...until you do understand exactly.
God bless.
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After SEVERAL falls [because WI does not 'allow' rails on the side of the bed or some type of belt to keep them from trying to get up on their own] it was discovered she had a couple fractured vertebra and 'recommended' a minimally invasive procedure where cement was injected to fix the fractures. This was 'supposed' to reduce the pain she had been complaining about. Well, seems the anesthesia pushed her into the next level of Alzheimer's and here 'pain' was much worse. After several weeks of screaming in pain (and no amount of pain meds helped) a PA at the full care nursing facility suggested it wasn't normal pain, it was "nerve pain" (gabapentin was her silver bullet). Even with the gabapentin there are days when she will make sounds as if she is in pain.
It is a very cruel disease and difficult for the person who has to watch their family member continue to decline.
Spending time at a memory care facility on a regular basis is very depressing as well. I have seen people come in and within months they're gone or others (like my mom) linger for years; no apparent rhyme or reason.
What you're going through is anguish. There's no other word for it, really. Watching your mother decline so quickly and then having the added stress of the tests at the ER, and now the need for hospice....its all too much. My heart goes out to you.
I had a great experience with hospice for my dad when his brain tumor grew, overnight, and nothing could be done for him medically. They eased his pain with morphine and his anxiety with Ativan. He died quickly, thank God, 19 days after hospice was brought in. I was able to lie next to him in bed and tell him all the things I needed to say before he departed this life for the next.
I hope the same for your dear mom, if now is her time to transition. May God grant both of you peace and comfort during this difficult time, and no suffering for your mom.
I have spoken to one hospice company and also heard good things about them, there's only one more I wanted to talk to, but the feedback from people "in the know" on both companies is positive.
Mom continues to yo-yo, back in the wheel chair, but speaking a few complete sentences. I think this is a good move for her, and I hope to be setting it by by the end of this week.
Her treating dr said that might come a time when you have to request hospice for her and it was at the ER that night that I decided it was time. Her dr ordered the hospice and it's been a godsend for me. She will no longer have to go to dr appts, ER, or whatever as hospice will take care of all that.
So....what to expect. My mom is also in a care facility. Expect to sit down with the Hospice nurse as well as the Hospice care representative. There will be forms to sign and expectations to be discussed. They laid everything out for me and asked me several questions including communication timing and channels. They said that it was paid for by Medicare and that they would be evaluating my mom for care frequency and type.
Since I started Hospice for her 3 weeks ago, she is seen three times a week. They help her bathe and they evaluate her for pain and confusion. She is continuing her decline and the hospice nurses have been in communication with me via phone or text two times a week.
I know it's a relief for my mom to know that she doesn't have to get to a dr or ER in her weak state and it's a relief to me to know that I no longer have to take her appts.
Hope this helps.
I asked myself, why are they sending my Mom to the ER, the only thing wrong with her is Dementia, and nobody can fix that. All the tests and stuff are so traumatic. We have hit the point where ruling out "other" problems is no longer helpful...she just keeps declining and why do I want to preserve her body? So she can "enjoy" continuing to, literally, lose her mind?
That seems cruel, and I definitely don't want to be cruel.
Thank you for the encouraging words. It about broke my heart when they were doing the catheter in the ER and she was screaming and crying...I could hear her down the hall and around the corner, and she was behind closed doors. My iwatch kept yelling at me that my heart rate was too high (duh).
I'm pretty bitter about the whole ER thing, and they were talking about sending her today too.
For what? She's no longer throwing up, all her blood work, urine and stool checked out OK. The CT scan of her stomach showed nothing, she doesn't have a fever. I feel like the one caregiver was totally judging me today, she said, "Your Mom isn't right" and I get that, but she has a progressive disease, a stomach bug, and hasn't had her meds in 3 days. The only thing I can think is that they might hook her up to some fluids to help prevent dehydration.
Clearly I'm a little lost here, and I appreciate your kind words, and I am glad you mentioned the morphine. So far they have been quite conservative with pain meds because of the increased fall risk, but if she's stopped walking (which she has since Sunday) then maybe the fall risk is now a non-issue.
Again, thank you.
I'm sorry that your mom has had this sudden decline. It does sound like maybe a stroke?
I can only share my experience. The only thing I ever promised my mom was "no pain". I included psychic pain in that equation. When she was beyond being able to tell us what hurt, we called in hospice and they gave her morphine. Previously, the NH had her on fairly high doses of non opioid pain killers but she was still grimacing and behaviorally expressing pain. The morphine gave her peace.
I hope you can find your way in this part of mom's journey.