Caregiving is hard. It is emotional. It is physically a lot of work. It is mentally exhausting. And caregivers need support. Desperately.

I will NEVER tell any caregiver not to take all of the help. I will never discourage anyone from asking for more help. And, I will never tell anyone not to offer help to a caregiver. But if you are the one helping a caregiver (or just judging from the sidelines), here is my advice – PLEASE PLEASE PLEASE keep these things in mind when you want to help:

(1) First, believe that the caregiver has the absolute best intentions, understand that the caregiver likely questions every single decision he or she makes, and know that he or she is exhausted – so avoid saying things that might come across as criticism.

(2) Second, the caregiver has likely already identified whatever issues others see, so consider approaching issues as “wow, what are you doing to deal with this” or “wow, I had no idea there were so many problems with that” rather than “oh my gosh! This is a problem, you should do something about it.” But – see point number 3.

(3) Third, if you identify a new problem or issue, offer to take care of it rather than just adding it to the caregiver’s never-ending to do list.

Often well-meaning helpers are not able to see the full picture. It is very hard to understand the changes that loved ones go through as they age. Sometimes it is impossible to believe the changes if you are not around to see them on a frequent basis. But, your genuine desire to help can make the caregiver feel like they are being interrogated, their decisions are being judged, and their competence is being questioned. I know full well that I am not perfect. But, I am doing my best. Here is a wonderful example of someone who is truly helpful: as I face the challenges of caregiving, my cousin has given me the most amazing gift. When he comes to visit, he doesn’t wait for me to make plans or participate, he spends quality time with my Grandmother and she loves every single minute of it! I am able to use it as a bit of a break. And, even better, every time that he and I text or talk about my grandmother’s challenges, he always (whether he does it intentionally or not) tells me thank you and ends our conversation by telling me that he trusts my judgment and will support my decisions. It is a little thing, but his kindness means the world.

Family dynamics make caregiving so much harder. I am a 47 year-old woman, with a family of my own that I manage to keep alive, but to my grandmother I will always be her oldest grandchild and to my parents I will always be their daughter. Perhaps the most difficult part of my caregiving journey has been adjusting the way I deal with my extended family. I have had to take on a new assertive role and be very clear when their help was not helping. My dad texts to remind me to call my grandmother (I know she tells him she hasn’t talked to me in ages, but I had dinner with her the night before), to tell me I need to make sure to tell my grandmother about upcoming medical appointments (I wrote them on her her calendar already), and to explain ATM transactions or credit card charges (Grandmother made those, ask her). He comes into town a couple of times a year, makes lists of potential issues and then, like a tornado, passes through and leaves a mess.

My mom, on the other hand, wants to do everything she can (she is truly a saint on Earth), but lives far away. She often panics when she is unable to reach Grandmother on the phone. She convinces herself something is very wrong if she attempts to call for several days in a row and gets no answer. I understand how much she worries. Mom cannot believe that something as simple as the telephone has become difficult for my grandmother. (Hint: try Number 2: “Wow, I had no idea Grandmother was having so much trouble with something as simple as using the phone.”)

Things would be easier if I were not always needing to be the intermediary. But for a month or more, it was likely that my grandmother was in her room, the phone either wasn’t ringing or she was not answering. Sometimes she didn’t get to the phone in time (even her small apartment became too big for her to get across quickly), sometimes she forgot which button to push to answer the call, sometimes she heard the ringing but she did not realize it was the phone, and many times the hand-held cordless phone had a dead battery. I am also convinced that, when she is having a good day, my grandmother screens her calls; she will talk to you when it is convenient for her.

A solution was clearly needed to all these phone related issues. First, I tackled the cordless with rechargeable batteries. These were the same phones my grandmother had since she moved into her apartment many years ago; they had never been a problem before. Somehow, she had “lost” the understanding that the two phones had to be put in the cradles to recharge. Every time I came to visit, both the “broken” phones were on the coffee table and the batteries were completely dead. I would charge the batteries, explain to her that she needed to put them on the charger when they were not in use, and we would start all over again.

Complete blanks seem to be invading her mind – things that she would have done without a second thought, like replacing the phone in the cradle, using utensils, or writing a check, just forgotten. Some days, the problems are not evident at all. Other days, I can see a change in her face when it is clear she has no memory of how to do some common task. I try to always jump in, without making it a big deal. It is hard to believe, and easy to explain away as an isolated incident, if you aren’t seeing it happen regularly.

Dad, no, this isn’t something that needs to be reported to the apartment building. The phone jack works. . . she just won’t leave the phone plugged in there.

Once we got past the dead batteries, the next problem became apparent. Grandmother frequently moved the phone cradles all over the apartment, plugging them into nonworking wall phone jacks, even though her phone service (like all phone service in the apartment complex) is provided through her cable provider, via the phone jack on the modem. So no matter where she moved it, the phone was again “broken.” (Also fun and exciting is that in moving around the phone, she had unplugged her Wi-Fi pacemaker monitor at some point months earlier and never plugged it back in. Another issue to add to the list).

To appease Grandmother (and each of my own helpful parents), I bought new phones and plugged them in properly. On good days, the phone was charged and she answered it if she wanted to talk to the person on the other end. On bad days, the phone battery was dead. And on the worst days, the new phone telling her to “please charge phone” confused her, which is why I found it wrapped in a towel and in a shoe box under the bed. And to add to the fun, she found other random phones to try. I would arrive at the apartment to discover a completely different phone plugged into a non-working wall phone jack (where did all these extra phones come from?)

After months of messing with the handheld cordless phones, and taking endless calls from both parents complaining and offering advice, I decided we were going to switch to a good old corded phone with an attached handset. No more battery charging! I also noticed she was forgetting phone numbers, so I did my research and bought a phone made just for people with memory issues. I installed a corded phone with large numbers and programable buttons that you put names and pictures on to indicate whose number was which button. A perfect solution for her apartment.

That still left the problem of her cell phone. My grandmother once used an iPhone and iPad regularly and loved playing words with friends with my cousin and getting pictures of great grandkids through text messages. Unfortunately, things had changed and she hadn’t used her iPhone for at least a couple of months. So, I tackled the cell phone problem. I can assure you that a woman who cannot work her cordless phone cannot possibly work an iPhone, so I decided to cancel the service and remove one more problem. It took months and dozens of phone calls to Verizon to cancel and pay out the early termination penalty before the end of the term of her contract, but I finally crossed that off the list as well.

Again, a “broken” cell phone led to she and Ollie to taking things into their own hands. The two of them, in Ollie’s car (which is another story entirely) headed off to the AT&T store where a young salesperson was more than happy to sign them up with brand new phones, a service contract, and a new phone number. They came home with matching navy-blue burner phones that looked like flip phones from the 1990s.

I spent hours over the course of about a month trying to remind Ollie and Grandmother how to work their new cell phones. Given that the phones were identical, there was constant confusion about which phone was whose. This confusion resulted in mailing address labels being placed on them and then the phone number for each phone being written in sharpie on its back. Of course, nothing can be easy, one Tuesday at dinner I was told, “These phones aren’t working now. They won’t let me make a call. . . Look, I try to call Jackie and it doesn’t even ring.” I have to admit, this one took me a minute to figure out, but as we ate, I suddenly realized that they had written THEIR OWN NUMBER on the back of each of their phones and then tried over and over to call each other by looking at the back of the phone and dialing their own number. I explained this to them – – while trying to keep a straight face — crisis averted.

Over time, the cell phones also were never charged and, at this point, Grandmother’s is in a drawer. Unfortunately, on her best days, Grandmother and Ollie decide (once again) that they need cell phones. I am once again explaining why that isn’t their best idea and trying to avoid another contract, with another carrier, and ongoing charges for a new phone.

More concerning than dead batteries, missed calls from family, and new contracts were the people whose calls did get through. It was apparently always convenient for my grandmother to talk to the representatives from whatever cancer organization, police board, or politician was calling to ask for money. As I spent more time with her, I realized that her phone rang all day, and it was almost always a very aggressive or clever phone solicitor. She in turn often gave money, leading to more calls. These small donations began to add up, and we were not always sure who the organization was or if it was legitimate. From time to time I would take the phone when she went for her wallet and hang up on the call. She wasn’t happy that I handled it that way, but it became clear to me that these aggressive phone solicitors were targeting an older woman who was eager to be wanted and important.

A helpful by-product of the phone debacle was that I started a new phone line with a new phone number instead of keeping the same phone number Grandmother had for decades. It was sad letting go of the first phone number I ever memorized, but it ended the constant solicitation calls. I learned that predators use this method to take advantage of older people who want to talk and may be convinced to give them money. They call day after day, asking for funds for causes (real or not) that tug at heart strings, making the person feel vital and important. It can get out of control fast and changing her phone number had the wonderful benefit of protecting her from that (at least for a short time).

In my head, I know that many of these rounds of difficulty are Grandmother’s attempts to continue to have control and resist the changes coming with this stage of her life. Her ability to go out and buy a new phone, her ability to spontaneously choose to donate and spend money, and her ability to make decisions that impact her living arrangements is important to her. The constant messes that result from her need to convince everyone (including herself) that she can take care of things are a headache for sure, but I have to continually remind myself (and those who want to help) that she is in a time of uncertainty and trying to find her way through this. I have to give her grace. And, helpers out there have to give caregivers grace, trust, and reassurance. None of us have done this before, and we are all doing our best day by day together.