Nurse aide? Companion? Need help for grandmother with colon cancer
May 3, 2018 8:06 AM   Subscribe

Grandmother has been diagnosed with Stage 4 colon cancer, and we anticipate more hospital etc stays in the next year. Added complication - dementia/memory loss. We need someone that could potentially stay at the hospital with her. What are we looking for? Any recommendations or experiences for elderly with colon cancer also welcome.

Grandma is 91. She is in assisted living, and has been having low kidney function and issues keeping her iron up for years. She went to the ER with bloody stool and feeling awful, and a CT scan shows a mass at the intersection of her large and small intestine, with lesions on her liver, possibly indicating cancer and that it is spreading.

She is on the Decatur Emory campus, which means that getting to appointments is pretty easy - there is a bus she can take with a companion, that has a wheelchair lift. (She can walk with a walker, but tires easily, and appointments make her anxious. We normally take her in the car, but with a travel wheelchair, to make things simpler/faster.)

She has some memory issues, often exacerbated by UTIs from her Foley cathether - which we have to treat sparingly due to her low kidney function (and the drugs she is allergic to). When she goes into the hospital, her memory issues are made drastically worse due to lack of sleep, different meds, different environment (etc etc).

Due to this, and the unreliability of her ability to communicate with doctors and to relay the information from the doctors, when she goes into the hospital, we have been staying with her 24 hours/day. This is difficult, because it is now down to two of us that can do that.

I think what we need is someone (maybe two someones) that can do the following -

1. Someone that can be trusted to stay in the hospital room with her and to either call us every time that someone comes into the room to do something, or to be trusted to convey information to the doctors (such as - she can't swallow pills, needs to chew them, here is what happened to bring her here, etc. Things that may be in her chart, but that they don't always see.), and who can also do things like help her adjust her bed, change tv channel, remind her why she is there and how long she has been there, etc.
2. Someone that can go with her to doctor appointments, and can get her where she needs to go and convey the information that we need to the docs and that they say to us. They could also call us during the appointments.

Dad and I both work full time jobs, and we are currently doing 12 hours shifts at the hospital - I am there during the day for now, and he is taking nights. I'm "working" from the hospital to some degree, but it's really winding up being available for things by phone and not getting much done. This is not a long term solution. It's really tiring for both of us, and although we would still visit her and be involved, it would be great to have someone else there with her part of the day or at night.

With the cancer diagnosis, her appointments may increase. She is not treating the cancer itself, but still wants to have blood transfusions and treat the anemia. She is not at the point for hospice care yet, as she will still be going out to appointments.

We are supposed to talk to a social worker today, and will definitely ask them for some options as well.

What am I looking for / should I search for? Realistically, she has 6+ months left, unless things get worse. She does have some money left, and we could pay someone for some of this - especially now that we realized she likely won't live for another 10 years of care.
posted by needlegrrl to Health & Fitness (9 answers total) 5 users marked this as a favorite
It can vary from state to state, but many people assume that "hospice" always equals "being in a bed and staying there until death," which is not the case for most hospice situations. If your grandmother has a terminal illness, it may be worthwhile to contact hospice and see what kind of care they can offer, even at this early stage in treatment. I have several relatives and friends' relatives who had hospice care that worked with patients who were very mobile and went to appointments outside of the home for palliative care.

It does vary widely depending on your area, but it may be an avenue worth pursuing, and also to ask about resources if they agree that it's too early in the process to bring them on-board just now.
posted by xingcat at 8:26 AM on May 3, 2018 [2 favorites]

This is definitely a thing people hire nursing aides for. A social worker from the hospital should be able to give you a few companies to call about hiring someone.
posted by MadMadam at 8:41 AM on May 3, 2018 [1 favorite]

I can't comment specifically on the right person to stay with her while she is hospitalized, but I want to let you know that there is a difference between hospice and a sort of "hospice lite" called palliative care. It is focused on comfort but is also set up for people who may not qualify for hospice because of the limited care for other health issues that may arise, and which the patient and family want to treat. The level of home care is far less, but the conditions covered is wider. The medical team will be focused on palliative care. They are actually distinct options.

My dad chose hospice and died last weekend after about 8 months of hospice for bladder cancer with metastasis to the liver. He was 88, so in the ballpark with your grandmother. Although 6 months is the traditional length of time allotted, hospice can easily renew the term, and it happens quite commonly that someone lives longer. Actually, patients in hospice do live longer - there are studies that show this. He was not comfortable ignoring health issues not covered by hospice, which is limited to covering symptoms directly related to the "qualifying" issue that landed him in hospice in the first place. He had a mechanical heart valve, and his insurance continued to cover his periodic blood tests and medication - this was not covered by hospice, which provided all comfort-related items, including pain meds, diapers, urinary catheters. They sent a home nurse once or twice a week, and a nurse was always on call for weekend or night issues (like problems with the catheter leaking) and always available by phone for advice. They sent a nursing aid to bathe, shave, and groom him three times a week, who was absolutely wonderful. They will usually send a chaplain, if desired, and they were able to offer a volunteer to talk with him every week or so, a wonderful young man on the verge of nursing school. He really connected with my dad and was eager to hear about all the stuff he did as a younger man, stories the family was sort of sick of, and my dad loved it. However, they did not provide any "companion" person, nobody to sit with him so his wife could go to the supermarket, or the dentist, or get a haircut, and so on. She had to hire an aid separately through an homecare agency. This young woman was terrific, and did dishes, laundry, made him lunch and helped him into the bathroom and so on. She was wonderful and they all developed a trusting relationship, allowing his wife to leave the house feeling OK about it. However, she was not allowed to administer any medications. Some agencies have different policies, so if medications are an issue I'd ask.

My point is that there is probably no one person or agency who will do it all. My dad's wife and I, the only child, worked together to cobble together continuous coverage. I stayed with him while she attended evening or weekend events to spare her the hassle of getting and paying for an aide for longer stretches, and it helped me spend alone time with him. I couldn't have done it all, and she was getting burned out by the continuous responsibility in the last few weeks, even with all the other help. He never went to an in-patient hospice, although they offered limited respite care, for example if she had had to go out of town for a few days, or if he had had complicating issues that made care at home impossible. The hospice mentioned intractable pain requiring IV painkillers, and the combativeness that sometimes occurs in late-stage Alzheimer as typical reasons.

So a very short description might say that Palliative care is dramatically less help, more healthcare interventions and hospice is dramatically more and consistent hands-on help and much less healthcare intervention. Lean hard on the social workers to explain all this to you, and if you choose an agency to supply care (hospice care or independently paid-for care) please, please ask for recommendations of all the local families you know. There will be agencies that are consistently recommended, and others that are best avoided, but the hospital social worker may not have much knowledge about what happens after the patient leaves the hospital.
posted by citygirl at 8:49 AM on May 3, 2018 [2 favorites]

One term used for this is "non-skilled services". This is distinguished from skilled services in that nurses/physical therapists/social workers/etc are formally trained and licensed. It definitely requires skill to be a good aide or companion!
posted by shiny blue object at 9:30 AM on May 3, 2018

Also look into this. I didn't read it all but it's what I googled up as analogous to In Home Supportive Services where I live, which meets some of the needs you're discussing. Ask a hospital social worker about it. If it's not quite what you need, the social worker should be able to help you find something that is.
posted by Smearcase at 9:34 AM on May 3, 2018

I'd give this place a call. Nthing hospice investigation as hospice can often improve quality of life. You'll get more benefit from hospice if she is qualified and elected sooner (most people wait too long). Some hospitals have volunteers who will sit with patients. Generally nonprofit hospices offer better patient care than for profit ones. You can research here. This might be another resource, and there's this place as well.
posted by OneSmartMonkey at 10:38 AM on May 3, 2018

I've had friends who had success hiring writers. The writer would work on their own writing most of the time and just be there to keep an eye on things and advocate for the loved one when needed. The advantage was that most low-paid aides are not native English speakers and as such would have a hard time navigating the complexities of health care and the associated bureaucracy. These were in-home arrangements so the writers would have a quiet space to work but I imagine a hospital room with a comfy chair could work as well.
posted by rada at 10:50 AM on May 3, 2018 [3 favorites]

I used to work for a temp-nurse organization and I am not even a CNA. But wealthy people would hire me thru the temp agency to sit with their family member overnight so nothing shady happened with the night staff. Or to make sure the nurses came if the patient needed something in the middle of the night.
posted by cda at 4:40 PM on May 3, 2018

Personal care assistants also do this. Whatever the job title you definitely want someone with high cultural competency, communication skills, and problem solving skills for some of those tasks. One the one hand experience with the more medical tasks is great, but on the other hand the willingness and ability to learn and follow procedures is more valuable. In my experience, people who have not worked in this field are better at this generally and particularly in positions where it is most important to respect the rights, dignity, comfort, and choices of the client. Although, of course that's most important in every situation. Ymmv, but it could be a good idea to look for someone based on the job tasks and values rather than previously held job title.
posted by Verba Volant at 7:32 PM on May 3, 2018

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