Category Archives: Caregiving

Thoughts on being a caregiver

Caregiving Thoughts #A

Transitions are special times. Dawn and dusk, when the world changes between night and day. The change of seasons, when the world changes between green and brown. The day your advanced-in-years cared-for moves out of the house, and everything changes.

Conventional wisdom is that people should stay in their homes for as long as possible, but there may come a point when, all things considered, that’s no longer the best option. When that happens, a transition is necessary.

I wrote in Caregiver Thoughts #9 about selecting a new home. Once that’s done, it comes down to execution.

Like any move, it starts with what to take and what to leave behind. Moving from a house to an assisted-living home (somehow the term “facility” just doesn’t work for me) will likely involve leaving a lot behind. If there’s not a lot of distance involved, this is a lot easier, as you can always swap things back and forth as necessary.

While the move might be accomplished in a day, the transition will take much longer. It’s a project. While you will have sorted out the major items (room, medications, schedules, etc…) pretty quickly, there will be a million little things that will only show up after the move. It’s just impossible to identify every little thing that needs to be taken along or left behind or changed. The important thing is to expect this.

Probably the biggest thing will be adapting to new routines. The cared-for will need to learn how things work at their new home: when are the meals, meds, what activities go on, how to get assistance, what’s this thing I’m supposed to eat? etc… The caregiver will need to take over things that the cared-for might have been taking care of around the house, adjust to making visits to the new home, work out how to stay in touch, provide those things that the new home doesn’t.

The caregiver’s role will change, but not really diminish. While I’m not as concerned now about being there every day to dispense meds, or having to jump out of bed in the night or rush off from work to handle some urgent issue (there are professionals there now 24×7 who can handle those immediate things), I am taking a larger role on the financial and paperwork side. Of course, I’m still my cared-for’s patient advocate, attend all medical appointments, keep up with what meds are for what, etc…

As patient advocate, it’s also important to coordinate with the home’s medical staff. Any notes I take from a doctor’s appointment need to be forwarded on along with any specific doctor’s orders. Everybody needs to have the appointment schedule, especially if the home will be providing any transportation.

I think it’s important to set expectations at the outset. It’s probably not going to be practical to visit in person for hours every day, so take a shot at what’s doable and work towards that. Having electronic communications can help to fill in any gaps there. While staying fully in “the loop”, I think it’s in everyone’s best interests to push as many routine things onto the home’s staff as practical. The staff is there 24×7, and if they can provide a favorite food, that’s one less thing that’s subject to disruption if I get diverted.

A lot of “givens” will need to be tossed overboard. Just because something was done a certain way, or in a certain sequence, when cared-for and caregiver were living together doesn’t mean that’s now the best way to handle those things. This can leave both feeing a bit lost as that structure evaporates, and before a new pattern begins to settle in. You just have to keep going, get done what needs to be done, and see how things play out. Keeping a to-do list (at least for the caregiver) can be handy, as it gathers in one place all those things that needs to be sequenced.

Right now we’re in the middle of the northern hemisphere winter, but I know we’ll be transitioning to spring soon. The only thing that doesn’t change is change.

Caregiver Thoughts #9

At some point, particularly if your cared-for is of advanced age, changes will be required. Your cared-for may need increasing assistance that you just can’t provide and still hold on to a full-time job, or maybe you just can’t be there enough. Watch for these changes and get ahead of them. Too often people need to move to a higher degree of care/assistance when some crisis occurs, and that can lead to hasty decision making.

So, give some thought to these things now, and investigate options in your spare time (yeah, right, spare what?).

I’ve recently been evaluating assisted living facilities. Ultimately, so long as your cared-for is competent, it’s their decision and it will come down to what’s affordable and where they feel most comfortable. The latter is necessarily subjective, but is also the most important.

As caregiver, I think the most important thing you can do is to watch for red flags that might veto a particular facility. Here’s a list of things to consider or ask about:

  • Security: are doors kept locked? Are visitors identified and escorted? How do friends and family gain access? Can anyone walk in off the street?
  • Is there a disaster plan? Are arrangements in place to house residents elsewhere if there’s a power outage, HVAC failure, or fire? Does the facility have a generator and how often is it tested?
  • If you keep in touch with your cared-for via electronic means, is Internet access available? Phone lines? How’s the cell phone coverage?
  • What sort of medication management is available? Is there flexibility if your cared-for handles some or all of their own medications?
  • Is transportation to doctor’s appointments available? If so, what are the limitations (distance, days, etc…)? Is there a charge for this?
  • Are pets allowed? This could work both ways, depending on whether your cared-for has a pet they want to bring, or would rather not have small furry/scaly/feathery critters around.
  • How many residents are there, and how many is the facility licensed for?
  • How many staff are on site when? Pop quiz question: how many staffers are on site right now?
  • Can the facility provide all the care your cared-for requires? Meals are probably a given, but what about assistance with bathing and dressing?
  • What sort of activities are there to fill the resident’s days? Are there exercise facilities?
  • Look around: are there exit signs? Smoke detectors? Is the facility clean, neat, and organized? Do the residents appear to be comfortable and well cared for?
  • What’s the reputation of the facility? Is it well-regarded in the community?
  • Who owns the facility? Many may appear to be local, independent facilities, but most are owned by larger companies that own and operate a number of facilities. This, also, can work both ways: a local, independent facility will likely be more flexible, maybe even cheaper, but may not have the resources of a larger organization. OTOH, a facility part of a larger chain will likely have more “disaster” options (nearby “sister” facilities) and more financial backing, but may be more subject to the machinations of Corporate America, like management changes and rules that might not be as flexible as one might hope.
  • If you can, get a look at recent health department reports. My own state does not make this information available (I tried), but if you can get access, do so. Just keep in mind that one report doesn’t mean much. Look at reports over at least a year, looking for recurrent problems. I know from experience that the day the auditor shows up and wants to see a file restored from a backup, that’s the one time the tape will throw an error. If there’s something in a report, look to see that it was resolved.
  • What mechanisms are there for a resident to call for assistance? Are pull stations located conveniently, and is a pendant that can be worn available?
  • Is there a waiting list? If so, would space be available when you think you’ll need it?
  • If your cared-for has to leave the facility temporarily (for a hospital stay, or vacation), will their space be held for them, and what adjustments to fees are made?
  • How are emergency situations handled? What happens when someone falls?
  • Is there a process to address concerns?
  • What range of care is available? If your cared-for needs increasing levels of assistance, or nursing care, is that available at the facility in question, or would they need to move?

Again, your cared-for is the best one to decide where they’re going to be happy. You’re just looking to vet out the choices.

All the facilities I looked at provided respite care, where your cared-for could stay there for a week or so. This can be a good way to try out a facility, and may be an option if you, as care-giver, need to go on a business trip or something, or just need a break.

Finally, and maybe most importantly, don’t let your cared-for think that you’re just going to drop them off and disappear. Y’all have been working together for perhaps a very long time, and that needs to continue. If nothing else, you need to keep a sharp eye on things to make sure they’re getting the level of care they need (and you’re paying for). You’ll need to change your routines to accommodate regular visits and general staying-in-touch. Your cared-for will continue to need a “patient advocate”. There will likely be incidental things, like reading material, music, or a favorite food that’s not readily available, that you’ll need to provide. Take them out to dinner occasionally. Celebrate their special days. And, just be there for them.

Caregiving Thoughts #7

Particularly when caregiving for a loved one, you want to be engaged, sympathetic, and, well, like you care, because you do care. But, like I’ve often said about work, it’s sometimes possible to care TOO much.

I’ve found it necessary at times to remind myself that I’m not the one going off to the ER, so that I can keep a clear head and focus on what the doctor is saying or on driving safely to the hospital (if my cared-for is already there, he’s getting the care he needs and I just need to get there with a minimum of drama; a few more minutes won’t make any difference). I think I understand why doctors and other PHI providers have a degree of detachment.

You may have to make decisions based on medical information, doctor’s advice, and what your cared-for would want. You may need to keep family and friends informed of what’s going on, and they may have input into the situation you need to consider. You may have to address the press (ok, maybe not). This is not the time to get caught up in “oh no’s”. Emotions, especially duress and panic, make for poor decision making (once again, my aviation background comes in handy, because this has been studied in depth there).

Take notes, consider all available information, and make the best decision you can based on the information that you have. If you do that, you’ll have no reason for regrets.

Like rule #1 says, you have to keep yourself in good working order in order to provide the best care for your charge. And, just like adhering to that rule #1, it can be difficult to mentally separate yourself from a loved one so you can focus on the task at hand and Do What Needs To Be Done.

Caregiver thoughts #6

There are a lot of reasons one might need someone to care for them, and varying degrees of all of them. Someone might have a disability (permanent or temporary). They may be ill (temporarily, chronically, or terminally). They may be at one extreme or the other of age (very, or somewhat, young, or old). So. I should mention that the reason my cared-for needs a caregiver is because of “advanced age”

What do you call someone in that condition? Many of the terms that get thrown around carry connotations that fail to appreciate the variety and complexity of things that condition entails. “Elderly”. “Senior Citizen”. “Aged”. “Geezer”. Just plain “old”. They all carry stereotypes that over-simplify the needs and problems of these folks. So, maybe I’ll use “advanced age”, or “one of many seasons”, just to have a term with minimal baggage.

Lest we lose perspective, it’s not all needs and problems. These people have unique capabilities too. Wisdom is something that tends to come with advancing age. Providing an anchor for the family. Giving witness to history that the rest of us never experienced (your orders: go talk to the advanced-age people around you and learn and record history first-hand). Or just being around to sign for that package at the house or meet the cable guy.

It’s often made into a joke that people of many seasons seem obsessed with things like digestion and bowel movements and even just getting up. There’s a good reason for this. When you’re younger, these things are pretty much automatic. You don’t give them any thought. Later on, these things become difficult and require attention and conscious effort. Something like walking is done with great care and planning to ensure a safe transit. Medications become necessary and require careful management. And, if you live long enough, you will have had enough problems with these things that you no longer take them for granted.

Caregiver thoughts #5

I came across this article, which talks about what sort of parameters or values we might impose on robotic caregivers as that technology develops:

The 6 values developed by Professor Tom Sorell are:
· Autonomy – being able to set goals in life and choose means;
· Independence – being able to implement one’s goals without the permission, assistance or material resources of others;
· Enablement – having, or having access to, the means of realizing goals and choices;
· Safety – being able readily to avoid pain or harm;
· Privacy – being able to pursue and realize one’s goals and implement one’s choices unobserved
· Social Connectedness – having regular contact with friends and loved ones and safe access to strangers one can choose to meet.

I think it might be useful for us more biological caregivers to keep these things in mind as well.

For my part, I’ve prioritized things as keeping my cared-for a) safe, b) comfortable, and c) happy, which kind of play into the proposed 6 values.

My “Safe” and Professor Sorell’s “Safety” are pretty much the same, with maybe an element of “Privacy” thrown in. How safe do you feel when everyone is watching your every move (the NSA not withstanding)? Safety includes things like removing hazards from the environment (loose rugs that can cause a fall), providing assistive devices, overseeing medications, and not just providing transport to the doctor’s office, but being there to discuss issues with the doctor and make sure instructions are understood. It can also include instruction and advice, like what to do with those funny looking Emails or the various scams that come around regularly (“answering the door does not mean opening the door”).

I think everything else elaborates on my “comfortable” and “happy”. I want my cared-for to be as independent as he’s capable of (and I have my own selfish reasons for that), so he can do the things he wants to do. For those things that he wants to do but can’t, I try to provide the “enablement” so they can happen anyway, whether that’s providing transportation, arranging tickets, or just putting up grab bars on the wall so he can get around – safely.

Independence, autonomy, and privacy can be a tricky thing when dealing with someone who’s aging. At some point, if we live long enough, we’ll all become less independent, autonomous, and have to give up some privacy. The trick is to have this happen gracefully, and only as required. If your cared-for is legally competent, you have to respect that and let them make their own decisions, be they financial, social, or medical. You’re there to advise and make sure all the information is communicated and understood. For example, make sure the doctor has heard all the complaints, and your cared-for understands their options. Then enable that chosen option. The question of competence has to be evaluated on a regular basis. If your cared-for decided to buy a swimming pool that just won’t fit in the yard, or, heaven forbid, starts getting into auto wrecks, you may have to make changes. But this needs to be done with great care, and not just because you don’t like that new friend they made.

I have to give a pat on the back to my cared-for. He made his own decision to not drive any more, and for this I am Eternally Grateful. This is a Huge step away from independence in our society, and that he did it on his own and before anything bad happened is worth the highest praise.

Humans are social creatures. Try to make sure your cared-for is not trapped in the four walls any more than necessary by providing every possible opportunity to “get out”. Take them along on errands. Look for shows they might enjoy. While in the four walls, I try to find ways to get people in touch with him, provide things to do (which can be a challenge for someone who has trouble hearing and seeing), make sure they have music, and I stay in touch myself while I’m away. And don’t squander the time you’re home with your cared-for: find things to do together, whether that’s playing a game. cooking, or watching a TV show together; don’t hide away somewhere behind a computer writing blog postings or some such nonsense. Hmmmm….

[I've collected all these caregiver thoughts under the category Caregiving for easy reference. You can follow the link here or on the lower right side.]

Caregiver thoughts #4

Time is a precious comodity (paid-time-off doubly so), so practice good time management.

Organize your to-do’s so you can get them done in the most efficient manner, such as stopping at the pharmacy, supermarket, and post office all in one trip (saves gas too). If you need to take a day off from work for some activity on the house, see what other things you can line up for that same day.

Write things down so they’ll be handy when you need to look them up, and refer to your notes often. This will help with time management by making sure things get done in a timely fashion and when it’s most convenient to do them. Doesn’t matter if you use a notepad, notebook, or something in “the cloud”, so long as you keep track of things.

Simplify things when you can. For example, get a transponder tag for that toll road on the way to the hospital so you don’t need to keep track of change. Use your credit card (just remember to pay it off promptly when the bill shows up) so you don’t have to make trips to the ATM/bank.

It’s ok to multitask in some situations; I learned to pet the cat with one hand while eating with the other, while reading the newspaper.

Use checklists to ensure that critical tasks (like dispensing medications) are done correctly. While this isn’t a time management thing per se, it will help avoid a time-eating “oh shoot”. It’s actually surprising to me that the use of checklists is so recent a thing in health care; pilots have been using checklists practically since the beginning of time, and to good effect, but I digress…

Utilize professional services where appropriate. If your cared-for is at home, there are home health care services that can provide wide variety of helpful services, from in-depth nursing care to just someone who can look after things and give you a break. One such organization is BrightStar Care. A close family member made extensive use of their services in 2013, and I’m using them as well now. I’ll probably write more about them when I have more experience with their services and operation, but so far, I’m quite satisfied.

Being careful with your time will help you adhere to rule #1

Caregiver thoughts #3

Gloves make me brave” – remark made by a Greenville Memorial Hospital Nurse.

You’re taking care of a life form, and life and metabolism require inputs and generate outputs. This is as true of yourself as it is of the one you’re caring for. In fact, the processes are basically the same between you and your cared-for (unless maybe you’re caring for an alien from another planet). So, if you need to help your charge with these functions, inputs or, yes, outputs, just put on a pair of gloves (where warranted) and get it done. Caregivers (professional and amateur, and parents) do that sort of thing all the time. Don’t make it a bigger deal than it is.

I will never take going to the bathroom for granted ever again.

Caregiver thoughts #2

Control expectations, and be flexible.

If you’re caring for someone who’s recovering, you want to convey optimism, but things proceed on their own schedules, and progress is not always linear. Some days it’s two steps forward, some days it’s a step back, some days you just fight it to a standstill.

It’s ok to make plans, but be prepared if your cared-for can’t attend that event, or progress isn’t “on schedule”, or even if you have to change your own plans because your cared-for needs you. Do not get so enamored with a plan that you get all in knots if it has to change. That becomes just a bunch of stress you don’t need and wastes mental bandwidth.

Options are a good thing. If your job permits, keep your laptop handy so you can do work when you’re sitting around the hospital. Know where the grocery stores are so you can make a quick stop on the way between places. Have a friend who can mow the grass and look after the cat if you get tied up. Carry durable snacks (preferably something healthy, like trail mix) in case you have to miss a meal. Know places where you can get a healthy meal if you don’t have time to fix something (I like Subway). Carry your most important medications with you (tip: a small re-sealable bag takes up a lot less room in a backpack than a pharmacy bottle – just make sure it’s properly labeled). Having options like these in your back pocket will help reduce the stress when the situation changes.

Be flexible, and know your priorities. If you’re called away from work, know that you’re taking care of the Most Important thing (your cared-for), and don’t worry about work. That’s what FMLA is for (for my US reader, anyway). Remember to keep your own self a spot on the priority list (see Caregiver thoughts #1) and, if your cared-for is in a good situation, go run or do some gardening or whatever you like to do to unwind.

It is what it is, and what will be will be (I think that’s from a song).

Caregiver thoughts #1

My role as a caregiver for a cherished loved one had been gradually increasing over the years, but recently, due to medical issues, that role has taken a very large leap. That’s why I haven’t been posting much here lately.

Remembering that I have a blog, I thought I’d post some thoughts on being a caregiver. I’m a practical sort, so I’ll concentrate on the nuts&bolts (so to speak) of being a caregiver and leave the deep philosophical/spiritual/psychological aspects to others who are far more qualified than I am to comment on such matters.

Rule #1: take care of yourself.

Everyone I’ve talked to places this first, and I understand the reasoning. It’s like when they tell you to put on your own oxygen mask before assisting others should there be a sudden loss of pressurization on the airliner. If you’re passed out gasping for O2, you’re of no use to anyone. My Sister put it quite nicely: “If you [as the caregiver] go down, he’s [the one cared for] in Trouble.“.

I’m posting this one first, not just because it’s Very Important, but because I’m finding it very difficult to adhere to. It’s very difficult to leave your loved one in professional hands, no matter how good, and walk away to even do “necessary” things like get groceries, but even more so to just unwind and do something recreational. Or maybe you think it’s not necessary to buy groceries. After all, there’s a food court in the hospital, and plenty of drive-thrus. IMHO, relying on those food sources would be a Big Mistake.

But it’s important to maintain yourself with adequate rest, food, exercise, and yes, just plain downtime. You need to operate in a way that’s sustainable.

Now that I’ve said it publicly, I have to stick to it, otherwise someone will hit me over the head with this post.