My Dad had metasticized untreatable very slow growing cancer. At the doctor appointment, someone commented about Dad, “should eat XXX to help with the cancer” and the Doc replied instantly, that, “any calorie is a good calorie for Dad.”
That really made it real.
I am trying to absorb lessons from this experience. My mom died unexpectedly and young-ish (71), while my dad is hanging on. One lesson I’ve learned is to retain as much functional fitness as I can and not let my muscles atrophy too much. Another lesson is to follow an example of a dear friend who pledged to her children that she would move to a continuing care facility when she was 80 no matter how hale and healthy she was. My dad resisted leaving his house, then resisted leaving his independent living apartment. When crisis struck, he had to take whatever assisted living arrangement was available, and it wasn’t optimal. Being proactive allows you to set things up the way you want them. That’s what I’ve learned. But you’ve got to have the humility and realism to do this. Pride/denial is a killer.
I’ve also learned that longevity in itself is not always a good thing. I’ve decided I’d rather die suddenly, reasonably healthy and functional at 85, from some massive stroke or heart attack, than limp into my 90s like my dad has done. This belief will affect the kind of medical care I will allow. Longevity can be a curse if you’re not healthy.
Lastly, I’ve learned that aging with dignity is immensely and depressingly expensive, and I’m making financial planning decisions with that in mind although I don’t know if it will be enough.
I have given a lot of thought to what I would and would not want to do in terms of medical care. There will be an age after which I do not want chemotherapy, for example.
I go back to my mom’s tomorrow. She is clearly in decline. My nightly call is now short and unproductive and probably more stress-inducing for my sibs than helpful, as they were in the beginning.
My sister told me tonight that mom doesn’t want to take her pills anymore, often spitting them out after my sister puts them in her mouth. The hospice nurse said that when she is unable or unwilling to take pills then we just stop. My SIL is freaking out about that, because she wants her to take the anti-anxiety meds in liquid form, probably because she’s afraid that my mom will become more difficult, but my reading is that she is sleeping more and more and I don’t see her being “difficult” at all.
Does anyone have experience with hospice and medications? I understand hospice’s thinking, but did anyone switch to liquid meds?
i think mom doesn’t have a lot longer. Mom turned 92 last week, and I called to sing Happy Birthday as always. When I got to “and many more” I jokingly asked her whether she wanted many more, and she said no. 
How about crushing pills and put in applesauce?
I’m sorry she is in decline and unhappy.
I’m sure your efforts are appreciated.
It is hard to switch from trying to fix things to being a companion on a journey.
Giving liquid meds for anxiety in Hospice is common. I would request for her comfort.
In my experience hospice encourages medications for anxiety and pain, and considers other meds (blood thinners for example) as optional. Ativan, Haldol and morphine were all in the kit and we tried them in different doses and combos.
@NJSue everyone is different but for my mother, it was a blessing to remove agency. It enabled her to forget entirely about managing things. If a birthday came up and she remembered how she used to give checks to grandkids, she would get very anxious and want to resume the entire financial management. I finally told her that I was her “executive assistant” and would take care of things and this made her feel that she was still important. I tried to avoid any reminder for her of things like check-signing.
I can see your view, on the other side, that some with dementia would still enjoy some agency byt I found those murky gray areas to be harder for both of us so I operated at a full P of A with that clear line.
My father spent his last 6 weeks in hospice. We wish we had done that sooner – stopping with meds, etc. was a great comfort to my mother, and while he was incredibly angry he was also not at all himself anymore. When he was awake, he was difficult; when he was asleep, we were sad. Hospice is for comfort, not recovery, and it’s hard to see that sometimes. The last few days of his life he was asleep 95% of the time. I read to him anyway.
They gave all his meds as liquids rubbed or dropped in his mouth, even the anxiety meds and painkillers. It worked fine. At some point, your mother will likely be unable to swallow anything, not even water. Dad did in fact choke one afternoon, and need to be Heimlich’d. He choked on a tiny piece of pancake! We had agreed to a DNI/DNR, so after that he only had morphine dripped into his mouth and water from a dropper to keep his mouth from drying out.
Your sister is lucky to have you, and every family has someone whose role is thinking about the path ahead. Be good to yourself, and know you are doing the best you can with the time you have left.
I think we’re at a turning point here. Dad has always liked to be in control of everything. He takes pride in his financial acumen. As his vision faded, he wanted bi-weekly oral reports from me about his banking, brokerage accounts etc. and insisted on paper statements he can’t even read. He has had a real problem adjusting to the digital information world and doesn’t trust it. I took his checkbook because I convinced him that having it in assisted living was a security risk. He insisted that I leave him with some cash so he “has something if I need it.” I compromised and said okay because the amount of cash is limited whereas someone cashing a stolen check could do real damage and would require closing/changing of accounts, etc. He always wanted to “sign everything” himself (part of the paper record paradigm–if it’s not a physical signature, it doesn’t count as far as he’s concerned). But recently he has had delirium and he called me at work last week fretting about some estate issue involving his brother, who died in 1991. He is worrying about situations that don’t exist. It may be best if I stop bringing up financials with him at all as it may in fact be more disturbing at this point than empowering.
@NJSue I struggled with this for years and my mother’s awareness of and desire to control financial things would fluctuate. I dreaded those birthdays! They always triggered trouble. (She had a chart of birthdays which I stealthily removed once I could.) She had a check book for a long time and I told the assisted living not to mail anything she mailed out. She added too many zeros!
I really sympathize.
You will appreciate this: one time when she was especially angry and vehement about financial things, and my “executive assistant” ploy was not working, I brought in all the manila envelopes in a big bag that contained financial stuff, taxes and so on. I told her I was happy to hand it over to her. This was a huge risk. But it seemed to mollify her and she said I could take it home.
One time I made a contract on a legal paper saying that she would be okay with me doing something financail. At the bottom she signed it but wrote “maybe”!!!
She had the most peace when the topic never came up. It was just the birthdays. This reminds me of what one staffer told me “It gets better as the dementia gets worse.” You can see I tried everything . (Gender played a role too. In her mind, sons handle money stuff and daughter clean up, well you know, bodily products!)
It sounds like you are still in that murky area that is the most difficult!
Boy, you have my sympathy on the real estate issue. My dad for months was sure that someone was going to steal his land in another county. His brother farmed it, but he was convinced that squatters were going to get it. I had to keep apologizing to the woman in the county tax office who he kept calling about it. When he died, she was so kind. 
My dad called his lawyer at home about this phantom estate issue with his brother. Fortunately his lawyer is an old family friend and also knows what Dad’s condition is now. Dad set up a trust years ago where he is the sole trustee and executor. He was so proud of it, but it actually is a trap because now that he needs help and oversight, he’s made it very hard for anyone to provide it. If Dad starts asking his lawyer for wacky things, I have to trust that the lawyer will notify us and we can start proceedings to get him declared incompetent according to the terms of the trust he set up. I don’t think he ever thought he would be incompetent, could not fathom it. Yet here we are. I hope we aren’t forced to get him declared incompetent if his delirium prompts him to ask for inappropriate measures. Once before, a couple years ago when he was raging against the dying of the light, he rescinded my and my sister’s power of attorney. He reinstated it when he moved to assisted living because they would not take him otherwise. If he asks to rescind it again I will have to challenge it legally. I dread this.
I’m so sorry, this must be wrenching. We relied on the network of a small town to insulate my father from the worst of his delusions and it gives a bit of peace to know everyone has your back and understands – but it is hard, anyway. We talked about having Dad declared but his lawyers and friends assured us everyone knew better than to do exactly what he wanted without checking. Hugs to you, and everyone on the path.
My father’s elder lawyer is great about these things. My father has not been declared incompetent and the lawyer is the only one with power of attorney. Everybody knows to run everything through the lawyer (the nursing home, insurance companies, health care providers, banks, etc.) The lawyer consults me about anything important before he does it. When my father asks for wacky stuff, the lawyer does not follow his wishes. My situation is different in that there is no trust getting in the way (for that matter - my father is broke so no money getting in the way at all).
How does the lawyer get paid if your dad is broke?
@Youdon_tsay My dad’s anxiety and restlessness really skyrocketed toward the end and hospice was very encouraging in finding ways to get those anti anxiety meds in him. It may not be physical pain, but anxiety and restlessness is still a form of suffering and hospice is there to help ease that. Crushing, liquids, etc., they found a way. At the very end, I would crush the pill and make a paste with the morphine and just get it in his mouth. Hugs!
@NJSue if you have P of A and proxy, can you just invoke them with the doctor and then your father cannot act, and you act for him? If he is sole trustee and executor, the option of another trustee declaring him incompetent isn’t available, but can you use the invoked P of A to control things? I did that in a similar situation but I don’t know the details in yours.
Power of attorney does not prevent the person from taking actions. Power of attorney only gives another person the authority to act on that person’s behalf but it does not in any way stop the person from taking actions on their own. The only way to do that is to have the state appoint a guardian if the person is determined to be not competent to act on their own.
@interested3 that was not my experience. A doctor invoked the proxy and by extension the P of A and my mother could no longer act.
I was told that if the P of A was created while the person was still competent, and it was then invoked, there was no need to have a guardian appointed.