Practical Advice About Home Hospice/Home Care
Started this thread because I found that the transition to hospice at home was more complex than I expected and there are many others here who had helpful tips. Many tips were not from those in hospice but from friends who figured out how to do things despite limited mobility. Looking at the past posts, the following was very brief but I would like this to be a repository of information, emotional and physical.
Thanks to all for participating!
Hugs, Susan
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Hi Susan,
Just sent you a PM but see you have started the thread. I hear you on the complexities. My first hurdle was getting registered for palliative/hospice care. My MO implied my GP would set it up and then my GP said no, the Cancer Agency does that. 🤔 Thankfully I have a great MO who prepared the referral.
Second hurdle, still to overcome, I had a call from home care while I was in the hospital indicating they had the referral and could I go to their clinic on Thursday. There was a bit of confusion as I thought she was referring to a referral for dressing changes now that I have nephrostomy tubes. Realized after it was probably related to Hospice. A retired home care nurse friend let me know they will try to get me to drive to the clinic. Um… no. That’s not what “home” care means to me. So Monday I get to call them to clarify and push back. Good thing I’m dealing with this now before I get really sick!
Thanks for starting this Susan.
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SS, Thanks for participating! As you know, the only way to keep these threads going is to have regular participation.
Sorry you are going through these red-tape hassles. It was similar for us. Once we told Home Care they were off the hook, they happily sailed off into the sunset.
Hope you're able to get comfortable despite the nephrostomy tubes.
Hugs, Susan
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Typed this up and then it disappeared in the thread so I'm rewriting what I remember. Will add to it as my experience in this strange stage of life continues.
- Will - I did this when my first child was born
- Advanced Directive - I did the 5 wishes document.
- Living Will - Covers how much intervention you want while you are still alive. For example, I don't want intubation but I want to receive antibiotics for a UTI.
- Durable Power of Attorney to transfers your legal decision-akingsomeone you trust. You will want to have a couple of back up care givers on there as well. This would includes things like access to your accounts to pay bills.
- Choose what you would like done with your body after death. I wanted to choose donation to UCSF but then found out that they will have the right to use my body anyway they would like and I would receive no ashes. Glad I read the small print.
- Hospice Agreement - Will probably want to switch from Home Care to Hospice. This changes how you will be cared for
- Funeral/Cremation Contract - Open-casket, cremation, human composting. Someone must decide who and what will be done with your corpse after you die. I chose cremation and then to have my ashes spread in the valley where I grew up or at my favorite beach.
- Taking a shower - Like many, I live in a multi-story house with the only shower up a steep flight of stairs. I'm light enough that my husband can just pick me up and carry upstairs with my daughter monitoring the path. I sit on a commode in the shower and my husband uses a handheld shower head to clean me. Wonderful to finally feel clean again after two weeks!
- Getting supplies - Your hospice company should be able to supply you with what you need. I've got half a dozen oxygen tanks including a huge one in case there's a power outtage, a plug-in air condenser, a bathroom commode (for when I can no longer make it to the bath, a bedside table on wheels, a cane or walker.
- Eating/Drinking I have some trouble with swallowing so I don't eat any dry foods and I try to sit up as straight as possible while eating and drinking. Always have water nearby in case you are having trouble swallowing
- Using a Hospital Bed - Try to get one with an electric position adjuster. Even a small change in angle can make a big difference. Avoid putting weight on your tail bone. The hospice nurse said this is the number one place where people develop discomfort. Try to keep one hip slightly higher. I have trouble lying completely flat.
- Using a cane. Just after standing, wait a few seconds to be sure you're not dizzy or weak. Use the opposite foot forward as you move forward. If you like to step on your left foot first, lean on the can on your right side
- Rest/nap whenever you want regardless of visitors. They will understand. I tell people not to stay more than a couple of minutes or just long enough to deliver food. Too many illnesses out there to put you or them in danger.
- Receiving help - In the beginning, I made the mistake of telling people I didn't need them to bring over food but then I ended up eating takeout which isn't healthy. Also, people want to help any way they can and cooking for you can be therapeutic for them.
Grateful for the tips and kind words you have shared!
Hugs, Susan
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Great list Susan,
I too have had to address many of the items on your list. I’m a bit behind you in progression so not everything applies (yet) and I have a few variations based on where I am at.
1. Will - I updated my will in 2018 but it’s now out of date. It was on my “to do” list before I landed in hospital so it’s clearly more pressing that I get this sorted ASAP.
2. POA - this one is trickier in my case. My mother was POA in my original will but with her advanced age and lack of technological capability the lawyer indicated it probably wasn’t the best choice. I had her share POA with a friend but am now rethinking given that my mom is unlikely to survive me by many years and our estate is complicated. I may just go with the lawyer but that’s expensive for the estate. Still TBC.
3. Funeral/body - I don’t want a funeral and have decided on cremation. Ashes/urn will be buried at a plot my parents purchased many years ago. Yes… good thing you looked at the fine print on donating your body! I was also considering a green burial but your remains can only go to a few specific places.
4. Hospice - here they work in tandem with home care and the good nurses will ensure palliative patients only see a couple of nurses. This is unlike my mother’s care which is more of a revolving door of over a dozen different home care nurses.
Going to post this and start another as I don’t have faith I won’t lose it
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So, here’s part 2. There are a lot of things to consider as you note Susan, some more immediate and some for when we are gone. One resource that might be of interest if folks aren’t aware already is a guide called Departing Details. It can be found with a Google search and free registration gives you the option of downloading an editable pdf or Word version. There are some bits that aren’t applicable to me but overall I have found it helpful for organizing things.
1. Passwords - It’s amazing how many passwords we accumulate in our lifetimes in this digital age, all of which those left behind will need to have access to. We don’t want to have them written down for security reasons but they need to be accessible. A friend of mine has a system that seems to work well, creating a password protected file with a very difficult password. He records all his passwords, what they are for and codes them in terms of security importance (i.e. credit cards would be a “1” but a social media account would be a “2”). His lawyer (or accountant - can’t remember which) has the password and file name in a sealed envelope and is the only one with that information.
2. Accounts - We need to make lists of all of our accounts while we are feeling well enough to remember them all, with instructions about what should happen to them when we are gone. For instance, I have instructions that someone needs to log into my BCO account to let everyone know when I have passed. My LinkedIn account needs to be removed. I’ve listed all the bills that come to me electronically and the things that get charged automatically to my credit card. Trust me, this will be a long list if you are on your own or the primary bill payer.
3. Taking a shower - this is another one of those things I wish I had taken care of earlier. A handheld shower wand is a must but it also needs to be accessible. In my old house the toggle for shower/wand is up by the shower head which is totally impractical. I’m still mobile but now, with nephrostomy tubes, I can’t get the dressings wet so a better set up is a must. And I can’t agree with you more about the simple pleasure of feeling clean! Five days in the hospital and I came home feeling totally grotty despite trying to have sponge baths. Of course, hot water helps which apparently doesn’t exist in the patient washrooms.
4. Supplies - in Canada you can get a lot of the supplies through the Red Cross, including hospital beds. You can also rent beds which are probably a bit better quality (aka comfortable). I haven’t needed this yet. When I was first diagnosed I invested in adjustable beds for both my mom and I so am hoping to be able to avoid having a bed set up in my living space for as long as possible.
5. Eating - I’m finding with my enlarged liver that I have periodic bouts of nausea and stomach discomfort. It seems to be worse with my bowels now not working quite right following days of little food and hospital food. Add to this the need to drink lots of fluid to keep my kidneys happy and space is at a minimum for my poor stomach. To address this, I’m trying to move to more frequent small meals. Wish me luck as my mom leans towards our typical heaping plate of veggies.
That’s all that comes to mind at the moment. Hope others will join in.
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SS,
The age of your mother definitely presents other issues. My Dad is 90 and my Mom is 85. At that age, anything can happen. They seem healthy but have experienced some new health problems as they age. For dad, it's small strokes, for my mom it's inflammatory intestines and large amounts of blood in her intestines.
I am hoping to have a small get-together at a friend's house. Of all of the memorials I've been to over the years, I felt true connection and meaning at this small get-together. Since the woman who died was in our support group, Mets in the City, I had never met her family but they made me feel at home. One of my support group friends joked that you can't help but judge the choices made and what might work for you. Always the bridesmaid but never the bride!
Consulted with my family about having a grave plot but none of them thought it was right for them. I have to agree that sometimes maintaining a plot can be a burden. My dad went to change the flowers at his parents' graves every week but our generation will probably forget where it is.
So wonderful to discuss these matters with you.
Hugs, Susan
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Great tips ladies. It’s a good reminder to get these things done sooner than later. I have an instruction book for my husband since I’ve run the house our whole marriage and I don’t want that burden on top of his grief.
Following for more advice and wishing you the best possible experience.
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These are great tips! I am following so that I can remember this. I decided this is my year to do more than a basic advanced directive and POLST.
Mae, I absolutely love the cover of that book! What a great way to laugh during a hard time.
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It’s wise to think things through early emac. While I have always been uber aware how fast things can change I just never managed to get myself organized. Always something more of a priority. Now, I regret my procrastination given my latest adventures and I’m not up to spending hours on anything. It’s giving me a bit of angst!
Mae, I had forgotten about that book. I recall Lita had her “death bag” which I think the idea for came from another member. I miss Lita. She was a force!
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Lita was brutally honest and downright hilarious! Both great qualities.
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After the legal, home care & hospice component is finalized, I think about my mental health. My support system may not be the folks who I want to lean on for EOL discussions, if lucid to have a discussion. I often find myself being cautious of my thoughts and feelings about EOL issues especially with the inner circle (they are in denial). I guess what I'm saying is maybe have in a mind that "person" who can handle it, albeit a minister, death doula, counselor or a friend, outside the immediate family.
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I certainly miss Lita too and having these instructions are better than someone else having to plan.
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SusanSF- just checking in to see how your are doing? I hope that you are comfortable and spending time with loved ones. thinking of you
Also you SS- hoping you are getting more comfottable
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mae: that cover is hilarious. I have a bright yellow accordion file folder. In my first month after diagnosis, convinced all I had was a few more months, I printed up info about a crematorium where they put your ashes in a mulberry paper casket so you can have a legal water burial. I printed up a boating company's info that will take your mulberry casket and a few guests out the appropriate distance. I don't want a funeral. Zero clergy. Maybe a wake so my friends can get drunk. I have a play list. I have a poem I'd like read.
My Advanced Planning Guide is mostly filled out. I am sure I will end up changing some things.
WIll - that needs updating so badly. I have no excuses for that one.
Passwords: Fortunately I don't have too many.
Lita. Bless her.
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I believe many of us share a dark humor about death that would make others feel uncomfortable. This is partially what sets us apart.
Many years ago, on the way back home from a cancer retreat, Commonweal, One of my friends who was an MD admitted that she liked to guess how each of us would die. She said she was stuck on one woman, also in the car, who had mets on her aorta. The most likely scenario for this woman was that she would suddenly collapse and die on the sidewalk We all shouted simultaneouslu "She's so lucky!" Unfortunately, her death was not fast nor painless but a girl's gotta dream, right.
Hugs, Susan
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Susan: I used to be appalled when people would say to other people like it was a good thing "You could get hit by a bus" I'm thinking now that would be okay. One moment you are outside, feeling fine, maybe going to pick up something nice for dinner or maybe some potting plants. All is right with the world then you step into an intersection and the last thing you see is the grill of a bus. Hard lines on the driver though, his passengers and any onlookers.
Maybe the planet will be hit by an asteroid and all this discussion will be moot.
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A couple of days after I went into hospice, I was sent this pink paper to post near my bed to clearly state my "Physician Orders fof Life Sustaining Treatments." Covers things like Full Treatment, Selective Treatment (Can use IV antibiotics. Avoid ICU) Comfort Focused Treatment (Request transfer to hospital only if comfort needs cannot be met in current location.) No feeding tubes.
The hospice team will also do what they can to keep me out of the ER
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Good point, Elderberry. One other thing I've learned since being on hospice is the wide diversity of approaches I've faced. Some people are over the top cheerful, some maudlin wanting to relieve every memory we've ever shared. Some have been anxious and can't look me in the eye. Most ask how I'm doing. Umm, I've been better.
I've visited friends on their death beds and I hope I treated them with the love and respect I have always given them.
Hugs, Susam
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susaninsf, you are a superstar, always rising above, digging for information, supporting others. We are here for you and your loved ones, in heart and soul. 🕊️ xoxoxoxo. What an inspiration and support you are!! So grateful for YOU!
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how do you know it’s time to talk to MO about hospice?
I think I am still getting benefits from my current treatment but feel like being able to do anything outside of watching tv is no longer possible
Am I getting close to needing hospice care?
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It’s really tough to ever know how much time we have. I’m in a similar situation in that I am able to do less and less but, at the same time, when resting I don’t normally feel too bad. I do think the drug I am on is slowing things down but not stopping progression. I do try to keep moving and am always working on trying to get things organized for when I am gone.
Technically I am now palliative but have not had any contact with Hospice. It depends a bit about what you hope to get out of Hospice care. I have no desire to leave me house so beyond some support to deal with symptoms, I’m still a bit unsure what they will do for me. Do you have specific needs in mind Dodgersgirl?0 -
sadiesservant- thanks for replying. I don’t plan on home hospice as my family is not keen on my passing in a room of our home. I am just fine with that, too.
I can barely dress myself now. I can’t climb stairs so can’t take showers or cook as stairs are involved. I am on 24/7 air so am tethered to a machine. Started having troubles getting out of my wheelchair with someone lifting me. Can’t use my legs to get in or out of bed alone. Having just spent a week in the hospital after 2 falls, I did like having help with bathing and getting on and off a commode chair. The chemo I am on is hard but tumors are shrinking not just holding me stable and ALP numbers are back in normal range (hasn’t been the case for years). Feel like chemo is working but my QOL is dropping rapidly due to harshness of the treatment. So just started wondering what kind of markers so we look for? I need a wheelchair or walker to move about. SpO2 drops rapidly when “walking “
Not ready to give up. Excited that tumors are dying off. But I am a planner and trying to be a realist, too.
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Dodgersgirl - I'm not sure if it varies state to state or not but my understanding is that anyone with an illness like ours can choose to be on palliative care at any point but typically must have a doctor agree that they have 6 months or less left to be transitioned to hospice. It seems like there are a lot of gray areas. When I am at that point I am going to discuss meeting with a palliative team at my cancer center to find out what my options are. I'm independent now but I can see where I might need help down the road as I live alone.
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Dodgersgirl, I hate hearing this and so wish things were easier. The only thing I can think of is that if I were in your situation, a big factor in my decision would be the chance of getting stronger and getting off oxygen eventually with this chemo. In my time on BCO, I’ve seen people bounce back from some really hard times.
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Dodgersgirl- I didn't know that things were so difficult for you. I hope that they turn around- not sure if they can dose reduce at this point now that it is working and help the side effects.
when my mom got hospice, my sister had moved in to help her- Hospice got her equipment and medications with no red tape which was lovely- like a wheelchair, special type of bed (if she had wanted it) sent an RN to check vitals and talk about her needs and health. sent a social worker or therapist to talk about how to discuss with family or her idea of a good death etc so that she felt that support. Also had a 24/7 advice support by phone for any issues.
You may need some sort of home health aid to help with bathing and transfers if you don't have a friend or family member who can help you.
If your health turns around sufficiently you go off hospice until you need it again.
My mom had home hospice and wanted to die at home which she did. I don't know anything about in patient hospice centers.
thinking of you
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emac and illimae— thanks for the input.
My MO’s office doesn’t have palliative care (guess we are too small) but I do plan on talking with MO at next appointment.
I don’t believe I will come off oxygen. Damage from Afinator back in 2020. I think if I look at my bigger picture, I see the oxygen needs plus CHF due to chemo in 2017, it feels like fighting everything on top of cancer. Maybe, for now, I just need to figure out what could be next while concentrating on tumors getting smaller even though SE from chemo are so awful.
Again, thanks for the replies.
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I don’t have anything to add on the hospice matter but wanted you to know I’m sorry for what you’re going through, dodgersgirl, and I’m thinking about you.
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divinemrsm- thank you.
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@dodgersgirl, we're truly sorry to hear about what you're going through. If there is anything at all
that we can do to help or support you, please don't hesitate to reach out. You're in our thoughts!Warmly,
The Mods
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