MOVING A LOVED ONE INTO ASSISTED LIVING/REHAB/LONG TERM CARE?
HERE'S WHAT YOU NEED!
Are you moving into–or helping a loved one move into–a new stage of life like Long Term Care or Assisted Living or Palliative Care or Hospice or Rehab? Been there, done that. Here's a list of things you might find useful to bring along/purchase and some handy tips.
Now, these facilities vary widely and so do people's personal expenses, mobility, needs and so on. If you're taking care of yourself and just moving into a community of older people with staff nearby, most of this won't apply. But any situation more like a hospital where you depend on staff in part or in whole for personal care and meals raises all sorts of issues and needs.
Our mom entered rehab at 94 and then transitioned to long term care and finally palliative care/hospice. She went from fully mobile at 94 (great genes!) to bed-bound for the last few months of her life. At every stage, our family learned as we went along. Here's a list of the stuff we found useful and you might as well, whatever your situation. If you're dealing with staff taking care of daily needs and laundry and meals and such while staying in a room (as opposed to a full apartment with kitchen and such), consider the following. I'll list the stuff you should consider getting followed by tips/advice I wish I'd had when starting out.
ENTERING REHAB/LONG TERM CARE/PALLIATIVE CARE? BRING THIS STUFF!
*three or four sets of sheets (NOT white)
*rubber/plastic "bag" for mattress
*three or four towels (NOT white)
*favorite or new comforter and blankets
*electric blanket
*favorite or new throw pillows etc
*dorm/mini fridge (assuming none in the room)
*microwave
*electric kettle
*plates/cups/utensils for four
*bendy straws/travel mugs/sippy cups and the like
*hospital gowns/pajamas/anything that can be easily removed without elaborate undressing
*Skechers / sneaker shoes they can step into
*Hospital tray cart /tv dinner tray caddy
*tablet/iPad
*e-reader/Kindle
*portable radio/boombox
*power strip
*favorite or new artwork/posters for the walls
*favorite wardrobe/clothes holder to replace any they provide which is probably rickety and tired
*laundry bin/bags for clothes, especially if you'll be doing their laundry and not staff
*balloons/flowers/plants
*bowl by door to room with candy/treats for all visitors (esp staff!), such as Hershey's Kisses etc
*weekly/regular treats for staff
*bedding or blankets for visitors/family; request a cot if available or bring chair one can sleep in
*notebook by door with pen
*something you haven't thought of -- daily or weekly you'll discover something new you need (a way to wash your hair in bed!)
*someone who loves you and will spend time with you and advocate for you (this needs planning!)
NOTE: All of this seems painfully obvious; you might say, well of course. But the sooner you have them all, the better. Now here's why.
WHY THIS STUFF?
*THREE OR FOUR SETS OF SHEETS (NOT WHITE) -- Most places offer sheets. They're almost always white and distributed randomly among "guests" after washing. Even really inexpensive sheets from Target or Walmart will be far nicer and preferable than using communal sheets. Trust me. You don't want white because the ones at the facility are almost certainly white. Bright colors are more fun and patterns even better. Something distinctive so it's CLEAR these are not the facility's sheets. Write your name in magic marker on a tag. Keep the spares hidden in a low drawer and out of sight. Stuff will disappear.
*RUBBER/PLASTIC "BAG" FOR MATTRESS -- Accidents will happen, including the spilling of drinks and personal ones. This is why you want multiple sets of sheets (not just two if you can afford them). Any decent medical supply facility or online will have plastic zip-ups to encase a mattress. The ones for bed bugs will also work.
*THREE OR FOUR TOWELS (NOT WHITE) -- Same as sheets. You DON'T want to use their towels. Even your inexpensive ones will be much nicer and softer. The more the merrier. Plus, if you have access to the floor's dryer (and you will if you're friendly to staff and helpful) tossing a towel in the dryer makes a nice treat to place over your loved one right after their bath/shower/sponge bath in bed. You want brightly colored towels so it's clear these are yours. Put your name in magic marker on the tag. Hide the extras or they might slowly disappear.
*FAVORITE OR NEW COMFORTER AND BLANKETS -- This goes for everything you're doing: the more personal and warm and friendly the room, the better. And the sooner you do it, the better. You might think, it's just rehab and they'll be home in a few weeks, so why bother? (For insurance purposes, rehab often lasts only three months, max.) But a personal blanket/comforter immediately makes your room special and so much nicer and everything will be useful if you return home and/or when you transition to long term care etc. Don't wait. And yes, write your name on it. When our loved one went into rehab, the very first day one of my sister's showed up with a new comforter and pillows and a throw pillow with positive slogans on it and other stuff. My gosh, I thought, what's the point? They're only here for a few weeks. Well, they were there for three months. Even if it had only been three weeks, the room was much nicer immediately and everyone who came in–including the staff and visitors–immediately commented on it and brightened up. My sister was right!
*ELECTRIC HEATING PAD/BLANKET -- most older people get cold easily. Our mom was a heat fanatic but this is a fairly common vibe. Even better than the blanket is the heating "pad." It's a full size blanket (not one of the tiny portable pads) and is easily available, but they go UNDER the person and not on top of them. It keeps them very warm but is much easier to deal with. They'll be in and out of bed–depending on their mobility–and it's much easier not to have stuff piled on top of them. Plus, the heating source under them can stay in place even when they're being cared for, looked at and the like. DON'T ASK if they can have an electric blanket. Just do it. (See the note on a fridge below.)
*FAVORITE OR NEW THROW PILLOWS -- As with the new or favorite comforter/blankets, the sooner you personalize the room or find some way to brighten it up, the better. A few dollars at Target makes all the difference and turns a sterile room into something personal and happy. Or at least happier. It also helps a lot with visitors and staff.
*DORM/MINI FRIDGE -- Assuming you're not moving into a fully stocked apartment with a kitchen and fridge, you'll want a mini/dorm fridge right away. DON'T ASK if you can put one in the room. Likely, they have annoying rules and could if they chose tell you no. Just bring one into the room late at night when some friendly staff person is on duty and most people are not around. Tuck it behind a chair and just make it as out of the way as possible. Most people won't care or will assume someone else said it was ok. This is one of many reasons one of your big jobs is to be as friendly and helpful to the staff as possible, so they're on your side. Likely there is a communal fridge. You don't want to have to trudge down the hall or mark everything or fight about who used what or who needs to clean it regularly. (The staff really won't care since they likely have their own fridge somewhere else.) Plus, it's much nicer to have whatever you want in arm's reach. A personal stock of Ensure or other shake-like necessities, treats, chilled drinks for family, stuff to offer visitors (which makes your loved one feel more like a host than a patient/charity case) etc. You'll still need the communal fridge to put stuff in the freezer. Mark them well and use sparingly to avoid fights over whose is what and who ate your ice cream or simply forgetting what you put in there.
*MICROWAVE -- Ditto! You don't want to use the communal microwave, which gets messy very easily and is rarely cleaned. It's so much easier to have one in your room to pop in coffee or tea or heat up a meal from the facility which is OFTEN cold for a hundred different reasons. (It arrived cold, your loved one was sleeping or with the doctor or in rehab or visiting with someone etc. etc.)
*ELECTRIC KETTLE --Assuming your loved one enjoys hot coffee or tea or cocoa, this is essential.
*PLATES/CUPS/UTENSILS/MUGS FOR FOUR -- The more you use your own things, the nicer it is. Plus, if your loved one is eating something you prepared, it's much better to NOT go to staff and ask for an extra mug or plate or utensils or maybe another fork because they dropped the one they had and on and on. Also you'll want this for family and friends who are visiting or brought their lunch or dinner or some cake or who knows what.
*BENDY STRAWS/TRAVEL MUGS/SIPPY CUPS AND THE LIKE -- Why are you buying and bringing stuff the facility should provide? So you don't have to go out and bother someone ten times a day for minor things. They'll like you MUCH more if you don't, especially when they realize you are making an effort NOT to bother them for little things. Then when you DO ask them for something, they'll know it's something you can't do on your own and likely do it quickly and happily. Plus, spills while in bed are a nightmare. Their clothes have to be changed. The sheets have to be changed. The blanket/comforter needs to be washed and on and on. Hot drinks can be very dangerous. Anyone can spill something but of course the frailer they become the more likely this will happen and the more dangerous and annoying (!) it can prove. The more sealed tight their drinks are, the better. Travel mugs for coffee/tea are much better than a teacup or open mug. The same for cold drinks. So anything from bendable straws to sealed travel mugs to sippy cups will be your friend. Nothing is worse than getting angry at a loved one because you TOLD them to be careful and they spilled their drink anyway and now you have so much work to do and you JUST changed their clothes....
*HOSPITAL GOWNS/ONE-PIECE PAJAMAS/ANYTHING EASILY PUT ON AND REMOVED -- Of course people who are not bed-bound and can be taken out for lunch will dress as they always did. But there's a reason older people often are seen in track suits or similar stuff. You'll soon discover there's an entire wardrobe of stuff that looks nice (enough) but is very easy to put on and take off. Zippers down the back? A pain. Buttons? A nightmare. Buttons down the back? Please, are you kidding? When buying pajamas, esp for women a simple one-piece that can be pulled up or over their head (not zipped or buttoned into) is what you want since they're often being examined, looked at, cleaned up, moved, helped to the bathroom, poked, prodded, etc. Men are less likely to wear them these days but just keep in mind the easier they are to remove, the better. Eventually, you'll want/need essentially hospital gowns that can be put on and removed while they're lying in bed. You can find decent ones online that are MUCH nicer than the ones the facility might provide. You know the drill. You'll want quite a few of them, put your name on them, etc.
*SKECHERS/STEP IN SNEAKERS -- The step-in Skechers are hugely popular because folks don't have to bend over to put them on. You can also find sneakers from Nike that sort of "bend" in half. You leave them half-cocked and when your loved one steps into them and puts their weight on them the sneaker locks into place. It's even easier than Skechers.
*HOSPITAL TRAY CART/DINNER TRAY CADDY -- easily found at Walmart, they don't need to be on wheels. They're just a table/tray/caddy you can push into place when someone is in bed but wants to eat or have a book or drink handy.
*TABLET/IPAD -- Yes, there's a TV in the room. But often it's pretty far away and hard for them to hear (or read subtitles). If you can keep a tablet/iPad handy, it's much better than the TV that's far away. Unlike the tv in the far corner, they might be able to hear the iPad without turning up the volume so loud it wakes their neighbors. It's also more engaging, more likely they'll actually watch it rather than idly glance at it once in a while etc.
*E-READER/KINDLE -- If they're readers, an e-reader is a godsend. You can have endless books available, you can increase the font size so they can read even as their eyesight diminishes and you can get tons of free books from the library.
*PORTABLE RADIO/BOOMBOX -- Their phone or their tablet can play the radio/streaming music etc. But if music or the radio is really important to them, a dedicated portable radio/boombox (if they have CDs and the like) will provide much better sound more easily with no fear of a tablet/phone running out of power, especially if they use it at night to fall asleep to the radio or music.
*POWER STRIP -- You've got a mini fridge and maybe a tablet, an e-reader, an electric kettle, a microwave, a boombox etc. You're gonna want a power strip.
*FAVORITE OR NEW ARTWORK/POSTERS FOR THE WALLS/FRAMED PHOTOS -- If you have framed photos/artwork from home, by all means grab it and put it up right away. (Even at rehab when they'll "only" be there say a month!) But you can always grab inexpensive posters and artwork from Target or a thrift store of the kind they like and use that as well. All of these touches make a powerful impression on the staff. It shows someone cares, it shows personality, it's more pleasant than 99% of the rooms they go into and that really impacts how they see the person staying in it. Plus, they know people are paying attention.
*FAVORITE WARDROBE/CLOTHES HOLDER TO REPLACE ANY DRESSER THEY PROVIDE -- Any time you can bring their furniture into the setting, the better. It's nicer, it's warmer, it probably fits more things (like the sheets and towels and pajamas and such you'll tuck away out of sight) and now you've got another surface you can put their personal mementos on like photographs and the like.
*LAUNDRY BIN/BAGS FOR CLOTHES ETC -- If you're very lucky, a family member or friend will do laundry regularly. It's one less thing the staff has to deal with (and believe me, they appreciate it), it's one less chance for your personal sheets and towels and clothes to "disappear" or just stupidly be given to some other room by a clueless employee and so on.
*BALLOONS/FLOWERS/PLANTS -- like posters and framed photos, anything to brighten the room is great. Flowers and plants, of course. But balloons are very easy. Get four or five and they will last a MONTH or two, much longer than flowers, and can be easily replaced. (Pro tip: they're very cheap at any Dollar Store.)
*BOWL BY DOOR TO ROOM WITH CANDY/TREATS FOR ALL (ESP STAFF) -- This is big. If there's no little table by the door, get one. Put a big bowl on it and fill with candy, like you'd do for Halloween. Visitors brighten up, likely your loved one will expect one every time they enter or leave the room and most of all it's for the staff. It can be just Hershey's Kisses and the like. Also, keep a bag to refill WELL hidden out of sight. Staff will slip inside and grab one as they walk by. Others will ask if they can have some even when they've been in the room taking care of your loved one. You get to say yes ("Always! Any time!") and they get a treat. Guess what? If someone has to come to your room because you've buzzed them or just to do some daily task, they'll come happily when it's an excuse for some candy. At some point, some staff (likely overnight) will raid the whole bowl and empty it. So what. Unless they do it every night, don't make a fuss. And if they do it again and again, still don't make a fuss. Just hide the bowl away overnight or only put it out once in a while. But never argue about something you put out and encouraged people to take.
*WEEKLY/REGULAR TREATS FOR STAFF -- Once a week or every so often, bring donuts or cookies or pizza or a cake or shakes for everyone on staff. And do it for every shift and the weekend folk who take care of your loved one, not just the one shift in the afternoon when you visit. You can do one shift one week and a different shift two weeks later and overnight two weeks after that and the weekend folk two weeks after that. Keeping every shift in mind is especially thoughtful.
*BEDDING OR BLANKETS FOR VISITORS AND OVERNIGHT COT OR CHAIR -- The facility might offer a cot, usually a back-breaking rickety affair. Maybe they have SOME nicely reclining plastic furniture that you'll use after putting down a sheet on it. Or you can bring your own fold-away cot or get a chair that reclines and can fit easily and be used by guests or someone spending the night. You'll also want blankets and bedding. The blankets are good for ANY guest, especially older ones during the day. Just have the blanket folded and out, clearly there for them to use.
*NOTEBOOK BY DOOR WITH PEN -- A great way for people to let you know they visited and when. Also a way for family/friends to make notes about issues that need addressing, when meals are happening, extra treats they brought and if your loved one ate them and how much etc. (If they really loved a shake from McDonald's, you want to know.) Just mentioning a problem the loved one had let's you start to see patterns or something that needs to be handled. It's a diary, a record, a guest book and more. Sure, people can text each other, but this is a good source for everyone and will start to be used in ways you hadn't discussed.
*SOMETHING YOU HAVEN'T THOUGHT OF YET -- Daily or weekly you'll discover something new you need. "Why didn't I think of that?" Suddenly your loved one can't get out of bed and they are only doing sponge baths. Washing their hair can be really challenging. You'll decide you MUST have this rubber tray thing with a drain that goes around a person's neck and shoulders that sort of allows attendants to wash their hair without them having to get in the shower or awkwardly lean into a sink. (It doesn't really work that well, but you tried!) The next day you'll REALLY need some other device to solve some other problem. A million little things will come up. You can't think of everything.
*SOMEONE WHO LOVES YOU -- This needs planning! You'll want family or a friend who really cares for you and will put in the time to watch over you and at least visit. So be nice to your kids. Some day you may need them to take care of you. Be nice to your friends! Then maybe they'll visit you, weekly if you're lucky. Ideally, you'll have someone in your life who cares for you and will make it their job to be with you and advocate for you and see to the countless little things you need. It's a full time occupation, so start being nice to those around you.
GENERAL TIPS
*DON'T FEEL GUILTY -- You're not taking the easy way out by having a loved one in long-term care. Indeed, in some ways you might be even busier than when they were still at their home (or your home). Now you have all the same emotional demands on you plus you need to keep track of all the different people who are being paid to care for your loved one, the drugs being administered by others, the quality of care and advocate for what's needed with staff and administrative people with wildly varying levels of competence and commitment (no matter how fancy the place they're going into; believe me).
*SHOP AROUND FOR THE BEST FACILITY -- While cost is a pretty good rough guideline (the very cheapest facility is almost certainly not the best), don't assume the most expensive one is the best either. Presumably your loved ones has friends of a similar age. Ask everyone (friends, their doctors, etc) for advice and you'll soon get a sense of which facilities have a great reputation and which don't. Further, when looking at a facility, ask everyone how long they've been with the facility and keep notes. The place that has a lot of long term staff who've been in place is a really good sign. The place with a lot of turnover and a lot of new staff who haven't been there long? That's a sign that maybe there's a pain in the neck boss people don't get along with or the facility is not paying enough to keep good people long-term. So knowing how long people have been working at a place is a useful indicator.
*LEARN THE NAMES OF STAFF -- Write down the name of everyone you deal with. I put them i my phone under the name of the facility in contacts. Identify them with details so you can remember who is who. Even if they're wearing name tags (and usually they aren't), they'll notice if you DON'T have to glance at their name tag first. Say hello and use their name every time you see them so your loved one is reminded who they are and maybe talks to them by name (always a plus) and you learn their name. Remember any little detail about their lives (if they have two kids, write it down next to their name) and if they were going to a kid's soccer game on their day off, ask how their kid did the next time you see them. Do everything you can to make them seen as people. It's nicer AND they'll know you are paying attention. This helps protect your loved one. Ideally, your loved one will be like our mom -- fun, friendly, bright and a pleasure to deal with. Being friendly really helps improve the care your loved one gets. If your loved one is boring or–worse–a pain in the ass, that's where a loved one really makes a difference.
*VISIT/CHECK UP AT DIFFERENT TIMES OF THE DAY AND DIFFERENT DAYS OF THE WEEK. Your schedule is undoubtedly busy and a certain time -- late afternoon or before work or Saturdays -- is the best time to come. Of course. But arrange with anyone else who might visit or take the time early on to check up on them at different times. Early in the morning, mid-afternoon, after dinner and even late at night. You'll get to know the staff on all the different shifts, they'll get to know you, you'll be keeping an eye on your loved one and the staff will know it. Maybe your loved one is asleep. That's ok, you'll just pop in and see how they're dressed, how they're sleeping, if anyone has been checking on them etc. I sometimes popped in late at night and found my loved one in wildly awkward positions or awake and miserable or with the sheets all off them or I saw their dinner was there and untouched (just good to know) etc.
*DO EVERYTHING YOU CAN FOR THEM, EVEN IF IT'S THE JOB OF STAFF. The more you do for your loved one, the less the staff has to do. They will usually notice and appreciate it. And if they DON'T seem to notice or care, it doesn't matter. You're not doing it for them; you're doing it for your loved one. Yes, you're paying staff and can expect all sorts of care and attention. That's reasonable but not realistic. You can complain but you're not going to be on-site 24 hours a day to oversee care. So be nice to the people taking care of your loved one, even if they're a pain or not doing the best job or not doing everything you would do. Besides, no one is ever going to care for your loved one as much as you. So you do everything yourself. It will be done right and with love.
*ASK FOR STAFF YOU DON'T LIKE TO BE REASSIGNED. This only works if you're not complaining all the time and making yourself a pain in the neck. It only works if you've gone the extra mile to do things for staff (bringing treats, etc) and clearly engaged and involved and paying attention to your loved one's care. Your loved one may simply not like a staff member or consistently complain about them or you may observe them as wildly lax and inattentive and imagine the worst of how they might behave when you're NOT around. In that rare case, you can approach the staff/admin you like and ask the person not to be involved in your loved one's care. This works best if you don't make wild accusations of endangering your loved one or otherwise harming them. That creates all sorts of issues. Stick to the simplest, safest request ("My loved one doesn't get along with them, but it's not their fault" or "I would just prefer someone else" and don't make it personal about the staffer) so it can happen and the person eliminated from your loved one's team. Make sure first this can happen and find out the likelihood of it happening before you say or do anything formal. And never tell the staff person themselves you want them removed. Ideally they won't even know you made the request or why they've been moved. Don't file an official complaint unless you have to. And of course this is a major request and won't happen easily or repeatedly. You can't handpick your loved ones team at a facility so do this only when it's really going to give you peace of mind. [Obviously, this is just a really poor worker we're talking about, not someone endangering the health and safety of your loved one, in which case you'd act immediately and do whatever you need to so your loved one will be safe.]
REHAB
*Rehab is usually for a vague period of time. Naturally, you think, it's only for a few weeks, so why bother doing any of this? Yeah, but it could be for a few months. Most of the easy changes (bedding, sheets, towels, artwork, balloons etc) will make a huge difference during those weeks or months. And likely improve their attitude and increase the chance they'll rehab as fully as possible. The appliances and furniture won't happen, but everything else could.
*Do everything you can, right away. Anything you buy will be useful no matter where your loved one goes next or can be easily donated.
LONG TERM CARE
*You can find the nicest facility in town. But unless you're advocating for your loved one and paying meticulous attention to their drugs and care, believe me, mistakes will be made by staff. It's a FULL-TIME JOB being with your loved one when you can and keeping an eye on their care.
*Visit when you can -- If you can spend time with them, then they don't have to be wheeled out into the common area where they sit and vegetate all day long where staff can keep an eye on them. The TV is on but no one can really hear it or care, "activities" happen but only for an hour each day, the few residents who can actually talk and hear each other during long term care sit in a group and the rest are just sort of...alone in a group, bored. This happens in even the nicest facilities.
*Pick your room with care and stay there -- It's very hard on old people, especially those with dementia (and most everyone 80+ has some issues), to deal with change. A nicer room becomes available? So what. It is very, very challenging to change rooms. Just moving from rehab to a long care room (we had no option) was challenging for our mom and is for almost all older people. Every change is a huge hurdle. As silly as it seems, just having a different room or a slightly different layout to the room is confusing. The change in staff is also a huge, huge deal. If it's at all possible, find the best room you can that suits them and stay there. A good view is great, of course. As much natural sunlight as possible should be a priority. So maybe some woods are lovely to look at but a room with windows that aren't blocked by other buildings and get a lot of light is better. Fight a room change if you possibly can.
*Be as close to the nurse's station as possible -- Maybe you think it's nice to be as far away from the hustle and bustle of the facility as you can be. Maybe. We were unhappy to be steps away from the nursing station (the little office where the nurse on staff sits when not going around to people). But it proved ideal. The nurses on duty get to know you more quickly. They are within earshot of your loved one. They see into the room a hundred times a day. Other staff come to them and pass the room and are simply more aware of your presence there, how your loved one is doing and so on.
PALLIATIVE CARE/COMFORT CARE/HOSPICE
When you are told about the option for hospice care, hear the words "MORE care." Hospice Care means MORE care. That's it. Nowadays, people are afraid to even hear the words "hospice care" because they think it means they're giving up, throwing in the towel. Far from it. What it means is you'll have a team in place like never before to get your loved one the best possible care. Instead of giving up, you're getting more equipment, more people pitching in and more and better care than ever before. Who wouldn't want that?
Nonetheless, people are so afraid of the phrase "hospice care" that instead they are being offered "Palliative Care" or "Comfort Care" or some other name that is not technically Hospice Care but is really just that under another name. You want Palliative Care or Comfort Care or Hospice Care or anything that you can qualify for as soon as possible. Ask for it before they offer. The moment your loved one is mostly or completely bed-bound, they might qualify. Here's what Palliative/Comfort Care/Hospice tend to involve:
*An entire new team of people dedicated to your loved one. Not only does this mean improved care, but it also means a lot more social interaction and positive moments for your loved one. Our loved one looked forward to the arrival of these people as a new highlight of the day.
*These new people are IN ADDITION to all the people already taking care of your loved one. And the current staff knows it means less work for them, so it makes their jobs easier and yet again, that means they're happier and more likely to be ready to help when you do need them.
*Free supplies. The Palliative/Comfort/Hospice stage includes a LOT of high quality supplies, from incontinence underwear to different and good little extras of all sorts. It's a huge cost savings because even at the best facilities you'll probably find yourself supplementing whatever they offer in terms of food and equipment. Suddenly, the Hospice people swoop in and have a checklist of the many, many things your loved one needs and your closet will be overflowing with all sorts of supplies. That includes items you hadn't thought of or didn't know about and items you've been paying for out of pocket.
*New equipment -- at this stage it's likely your loved one is mostly or entirely bed-bound. They'll get you a new bed that includes an air mattress (which is much better for preventing bed sores and better for their back for various reasons) and is desirable in every way. They also bring in medical devices and medicine so those are in place and ready if and when you need or want them. If you do need or want something specialized at a facility, that can mean requesting it and getting it from another building IF they have one in stock or getting one delivered. If it's a weekend, you might wait days. Breathing devices (if you want them), morphine drips and whatever else you might conceivably need are already there. Knowing everything is at hand is very comforting.
*New staff -- someone new from your Palliative/Comfort Care/Hospice team will come in regularly to give a sponge bath with warm water and be far gentler and thorough in their care. (They simply have more time and experience in doing so.) Maybe we just got lucky but everyone associated with Palliative/Hospice Care was a treat and really loving and attentive. I guess you don't go into this specialty unless you have those characteristics already in place. Also, it was the same team from the start of Palliative Care to Hospice and right up to the end, which goes to show how meaningless whatever this increased care is called. It's BETTER care, no matter how fancy or good your facility might be, so don't worry about what it's called.
*New drugs and attention to your wants -- the new team will discuss with you all your options in as much detail as you want. They're very sensitive to your personal needs as someone caring for a loved one and will be very careful not to get too far ahead of where you are emotionally. But if you make very clear what you understand and can handle, they will be as straightforward and direct as you are. If you are fulfilling your loved one's requests (say, for no feeding tube or whatever that might be), they'll make sure what you want is exactly what happens at every stage and explain what this means.
*You will likely have several options for Palliative/Comfort/Hospice care. Just like when you chose the facility, ask everyone who might know for advice, esp the nursing people on staff you know and trust. And you're in charge. If you aren't happy with the Hospice team, dismiss them and choose another one. Or if it's one person in particular, insist that someone else be assigned to your mother. They'd rather do that than lose a contract. Likely you'll only have two or maybe three different options, but recognize that unlike the staffing of a facility, you have more control on this.
Our Palliative Care/Hospice team was exceptional and ALWAYS available, even on weekends and off days. They came by sometimes when not on call just to come by or because we needed them to assess a change in conditon. Everyone should be so lucky as we were. But really, I have every reason to believe that's the nature of people who do this work. They're the best.
If you've read this far, I imagine you are dealing with a situation like this right now. (Or are about to!) I hope it's been of some use.
