Dying in place
August 14, 2019 9:49 AM   Subscribe

My uncle in-law was recently diagnosed with stage 4 pancreatic cancer and his quality of life is swiftly declining. He and his girlfriend are going to move into my house so that we can take care of him. Can you please help me get my logistical ducks in a row ? If you’ve been in this position what items have made things easier and what advice do you have ?

He is a frugal bastard and will be able to afford hospice home care which he wants, but he lives in a camper so it will be more comfortable for him here at my house.

So we will have a hospice bed and all medical equipment. And probably a hospice CNA several times a week and a nurse occasionally.

I’ve taken care of lots of dying people at work but only as a nurse and only at work. Do you have any advice for what will help him and his girlfriend and me ?
posted by pintapicasso to Health & Fitness (15 answers total) 10 users marked this as a favorite
I dealt with this a few months back and here are some things that come to mind.
-- It's good that you'll have all the equipment you need. The stuff that was most helpful for us was adjustable bed, walker, potty chair.
-- There will come a transitional moment when he can't get up on his own, can't get out of bed to get to the potty chair, can't assist with you lifting him. This was the hardest period for us, and unfortunately lasted a fair bit of time before the death. Find out how often you can get that hospice help into the home. For us, it wasn't nearly enough, and here's where we had to spend money on home health aides. There's a difference in cost and also availability if there's heavy lifting involved. Washing him will become more difficult at this time too, and our hospice would only come do that once or twice a week.
-- Pain management is going to become paramount toward the end. This may be easy or hard, depending on the hospice team you're working with. For us, the setup was the hardest part. Once that was handled, they were basically willing to shower us in pain meds.
-- Connect with a mortuary or whoever will be dealing with the body when the time comes. Learn what the process is for an expected death and how they will handle pickup.

Good luck.
posted by BlahLaLa at 10:03 AM on August 14, 2019 [7 favorites]

Sorry, as this breaks the rules of AskMe, but I want to say how lucky your Uncle and his GF are to have you, and to wish you the best in this difficult time.
posted by terrapin at 10:03 AM on August 14, 2019 [30 favorites]

When my dad was in hospice at home, having freshly laundered sheets every day was a constant source of comfort to him. Ask the CNA or nurse to show you how to change out bedding while your uncle is in bed on days he may not be able to get up -- there's a gentle tucking/rolling sort of procedure that allows for the patient's comfort.
posted by mochapickle at 10:07 AM on August 14, 2019

Best answer: From being on a family in-home hospice team for an uncle, I'd say make sure you have more people than you think you need who can help sit with your uncle-in-law as this progresses. Even when moving quickly, the dying process can be very slow and there are a lot of times when you are sitting next to a bed, making sure that the person who's in hospice has everything they need (like wiping things, clearing tubes, administering extra doses of pain medication, etc.). You're well-prepared for it, being a nurse, but at work, you have lots of systems in place to monitor and come when your patients need you, and at home, it's mostly an actual person in an actual chair next to the patient round the clock, and that gets hugely tiring.

Also, don't be afraid to take everyone and anyone up on an offer to help, and have specifics in mind. Some of the things we did were lawn care, laundry, shopping, internet searches....whatever will make the family's day easier. Don't think you're being a burden, because it's very rewarding to know you've been able to help in some way that's tangible when you're on the periphery.
posted by xingcat at 10:07 AM on August 14, 2019 [18 favorites]

Ask him what he likes. My brother died of pancreatic cancer, at home. He had hospitalizations for a stroke and other stuff, and he always asked for a warmed blanket; I think it helped with the all-over aching of the toxins from the failing organs and the cancer. No medical benefit, so the hospital was slow; I found out where the blankets and warmer were. He got to where the only way he could sleep was in a cushy recliner. He wanted family and friends around, and music. People really vary, ask.
posted by theora55 at 10:27 AM on August 14, 2019 [1 favorite]

First look at your space. Is there anything you can do to make it more accessible for his current and declining mobility? This might be moving furniture, adding grab bars, thinking about this stuff when they aren't there names it easier to modify.

Think about where you will store things (like bedside commode) is there a closet that's good for that purpose?

You'll have strangers in your home frequently, if there's anything you want to modify (sleeping arrangements, expensive decorations, access to the bedroom, that's stuff to do now)

Look up area hospice care agencies that serve your location. It will be good to have a list and any additional aides you may be able to get in place.

Depending on his age, income bracket and location he may qualify for home based community services in addition to hospice care for the activity of daily living stuff. Your local department area on ageing will have more information. Sometimes they have senior companion programs and things which are just somebody to come by and be with the person, and sometimes there are respite services for caregivers.

Think about lighting for caregiving and for him especially if he likes to read, or other low energy activities to keep him active.

You may want to think about living with his girlfriend and any rule, expectations, or just boundaries you have for her. A caregiving schedule upfront will be helpful. There also may be activities he is more comfortable with her doing than you. Ask.

And take gentle care of you. Remember your needs in all of this too. Caregiving is demanding work.
posted by AlexiaSky at 10:29 AM on August 14, 2019 [2 favorites]

We found a baby monitor was helpful to know when help was needed when ringing a bell was too hard.
posted by metahawk at 10:43 AM on August 14, 2019 [2 favorites]

It might help to have some sort of bell or summoning system. When my grandfather was dying, they installed a doorbell next to his bed and in the bathroom in case he needed help there. It rang throughout the house. You can go low-tech (an actual bell) or high-tech (something like Amazon Echo, which I understand can be used as an intercom).

They also wound up buying one of those metal shelf on wheels (like this) to store all the equipment (ointments, medicines, diapers, extra blankets etc.) right next to his bed, so thinking in advance about how you will allot space might help.

Sort of related to the shelf, this situation made me see that sometimes it's worth it to pay for convenience. Yes, you could store things in the closet down the hall, but it's more of a hassle. This might just be my family, but since you mentioned he is frugal, I think it takes a little "internal permission" to buy the wipes that open with one hand or the name brand whatever that has the scent that is a little nicer, or the shelf for convenience when you've got a perfectly functional closet down the hall.
posted by kochenta at 10:44 AM on August 14, 2019 [1 favorite]

pintapicasso, forgive me! I didn't see that you're a nurse. You would know all about the bedding!

I'll change my answer to try light massage and aromatherapy, if that's something your uncle takes to. One of our hospice volunteers was a massage therapist and she taught us some simple massages for our patient's hands and feet, and she left us some oils scented with lavender and peppermint to aid with the massage.
posted by mochapickle at 10:57 AM on August 14, 2019

My dad was very practical (and also frugal) and for whatever reason, he decided at the 11th hour to die at a hospice facility, rather than at home. This was after weeks of in-home care, and hours before he went into his final coma. We moved him, as per his wishes, but it was stressful.

Have a backup plan if your Uncle changes his mind to die at your home or if other logistics demand a move. Have a go bag ready and a plan worked out.
posted by Wossname at 11:23 AM on August 14, 2019 [4 favorites]

Is he still okay cognitively and talking with you all about this? If so: does he have a will and health care instructions? Do you know where those things are? Does his girlfriend have a plan for after your uncle’s death?
posted by bluedaisy at 12:11 PM on August 14, 2019 [3 favorites]

Talk through end-of-life plans now. Decide what interventions he will accept and which ones he won't. A DNR won't save him any suffering if you call 911 when he arrests, so think that through.

I'm so sorry about this. PC is a beast.
posted by praemunire at 12:42 PM on August 14, 2019 [2 favorites]

I’m sorry to hear about your uncle and he is so lucky to have you. My dad liked a warm rice pack for his tummy. The last couple weeks we needed someone everyday to help with all the bathroom related stuff and bathing. Also caregiver respite was needed a few days. When he was no longer verbal the pain management was the most difficult even though hospice made it rain meds. A combo of fentanyl patches and morphine seemed the best.
posted by gryphonlover at 12:46 PM on August 14, 2019 [2 favorites]

Legalities worked out ahead of time, while your uncle has the ability to communicate his wishes: will, advanced directives, any DNR instruction (which, if applicable, should be posted above the headboard, with additional copies on hand). (And possibly a medic-alert bracelet, also stating that DNR; see what's necessary to have his wishes honored where you are.)

And a clear understanding with the girlfriend -- is money being set aside to maintain the camper, if that's where they were living together before, for her return, or is it being sold? What are her finances like, if she's now caregiving full-time? Any monies left to her in his will may take some processing time. What are her plans for after his passing?

More people working on your team, definitely. Favorite music made easily accessible. Favorite foods stocked in the pantry. Lay in extra sheet sets, blankets, soft lounge-type shirts and pants, underwear and socks, medical supplies, and cleaning supplies, so you aren't hunting around at a crucial moment. More pillows, for re-positioning options. Extra wastebaskets, with lids and liners. Gentle hand, scalp, and foot massage can be really soothing.

A hydraulic lift so your uncle can spend time in the living room recliner, or sitting out on the porch, for a change of scenery and while the bedroom is cleaned and aired out. A comfortable sitting chair in the room for the patient and visitors. Speaking of visitors, would he welcome regular visits from any sort of clergy? For example, Catholics in hospice can have their confessions heard, and receive communion. Many non-religious organizations will send readers.
If you work at a hospital, is there a social worker you could consult, too?

Best wishes to you and your family.
posted by Iris Gambol at 1:35 PM on August 14, 2019 [1 favorite]

This is really a banal thing but before he arrives at your house, do a good house clean with all your noisiest things, like vacuum cleaners or power window cleaners etc. We found it too noisy to run those things around my mother’s space as she was being cared for. Also the people caring for her were sleeping at odd hours and it got really hard to do more than basic dusting and putting up with not great carpet until after her passing.
posted by honey-barbara at 2:20 PM on August 14, 2019 [3 favorites]

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