The early days

When we were kids we would fight loudly and physically. Usually, it was over the TV. We wanted to watch what we wanted to watch, and we were willing to fight to the death. These were the days of one household TV, and before there were TV remotes. (A knob was used to change the channel, kiddos.)

I have two sisters and two brothers. During these fights, one of us would eventually take the channel knob off the TV and the other would pull the plug. If we couldn’t watch what we wanted, no one would.

To an outsider seeing those fights it would appear we hated each other.

If they stayed around five minutes, they’d see us cuddled up on the couch sharing a blanket and reading a book, or giggling over shared confidences. Maybe even watching one of the TV shows.

All grown up

As adults, we are all incredibly different from each other. Though we all live in the same area, many don’t know we are siblings. Religion, politics, the way we spend our time — we’re all different. We can still drive each other crazy at times. But still, there is a strong bond there and a tendency to operate as one during hard times.

Looking out for dad

My dad went into the hospital in 2016 to have the left lobe of his lung removed. It was election day, November 8 (he’d already voted, which somewhat converted me to early voting).

He came out of surgery beautifully and asked for food in recovery. The nurse was not in favor, but this was the norm for my dad after surgery. She finally let my mom feed him some vanilla ice cream, one of his favorite foods. In his younger days, a half gallon could be a serving. He only got a few bites that night.

In the middle of the night, they took him to surgery because of internal bleeding. He never recovered. He died on December 18. That ice cream was his last solid food.

From November 8 to December 18, my dad was never alone. Either my siblings or I were there the whole time. Someone brought my mom every morning and got her home that evening.

A mom with Alzheimer’s

My mom never fully recovered from Dad’s death. Oh, few would totally recover from losing a man that you married on your 19th birthday and were married to until he died one month before your 60th anniversary, but Mom’s depression was excessive, and she simply did not seem like herself.

At some point (it took a while) we realized something else was going on and a neurologist diagnosed her with Alzheimer’s.

We weren’t surprised. It fit. It explained so much.

We were able to take care of Mom in her home for a while. One of us would stay every night, and we’d all make frequent visits during the day.

You never knew what to expect. The time came when we had to take her car away. It was during COVID, and we couldn’t keep her home.

At first, she didn’t wear masks, then she did and became that little old lady who chastised those who didn’t.

More care was needed.

We looked for caregivers to do day shifts but found that a fruitless process. Two signed on but quit before their start date (in one case a former patient again needed care and in the other, the current patient did not go into assisted living as planned. At least they were loyal).

We wondered if one attendant was enough. Mom was crafty and if she wanted to escape, she found a way. Plus, she barely slept and if we did, she’d get into all sorts of mischief.

The Memory Care Unit

A memory care unit was our best option. We wanted her to get the best care possible and with her Alzheimer’s escalating quickly we had no other choice. The vote was unanimous.

Emotionally this was a tough one for all of us because she had always said she never wanted to be in a facility. But she also said if she ever was, this was the only one she would consider. That helped.

Surprisingly she went rather willingly. She didn’t quite understand. She’d worked as a nurse and now felt like she had a new job. We went with it.

The Sibling Dynamic

These days we have a text thread between the five of us that is the primary means of communication.

It works well for me. I write “reports” after each visit and relay funny stories or concerns I have for her health. When I take her to doctor appointments, I always give a detailed debrief.

My siblings? One reports in on occasion.

The rest? While they will comment on the info others put out there or ask questions, they seldom give an update of their own.

In particular, the sister holding her medical power of attorney (along with a brother who is a traveling nurse so always out of town) prefers to take my mother to all medical appointments. She never reports back. She doesn’t seem to think it is important for the rest of us to know.

Another problem with texting: One brother gets sensitive about comments, yet never confronts them. He just ghosts us. On his birthday this year, I called him to say I hadn’t seen him in a year. He said it had only been a few months.

“And when was that?”, I asked.

He didn’t answer. Uh-huh.

Text is good for information, but misread or misinterpreted comments can cause issues. We all bring our own context to the reading.

The Family Meeting

The other night we had an in-person family meeting. Our first since Mom’s been in the facility, to my recollection.

The cost for my mom’s care has gone up about 30% in the two and a half years she has been there. My younger sister and I are her financial powers of attorney, and we have the very real problem of making sure her money lasts as long as possible.

The cost is now over $10,000 a month. In North Carolina, the median cost for a memory care facility is half that. We live in a small city, with less competition. I thought perhaps that was the reason, and it might be, but some small-town facilities around the state are less. The quality of facilities varies and there often waiting lists (though it seems fewer since COVID).

With all five of us kids living within a 30-minute drive to that facility (four of us 5–10 minutes), we don’t want to move her farther away.

Mom’s also comfortable in that facility, even though she believes she lives with my dad at a place they sold 20+ years ago. As I said before, she often thinks she works there.

We have a very limited budget to pay for her care. Mom had no pension (after 25 years of nursing in a time when pensions were a thing) and just gets Social Security. We sold her condo, and the proceeds are the remains of her savings.

There is a family business that my dad started, but historically my dad never drew a salary from that business. Everything went back into the business. It’s an apartment complex and the sister, who has managed it for 30 years, is trying to get some big projects done she had been putting off.

This sister had numerous talks with our dad when he was alive about why he didn’t take a salary. He said it was because he and my mom wanted the apartment complex to be an inheritance for us kids.

None of us are driven by money or the expectations of an inheritance. In fact, we all believe we were lucky to be their children, and the love they gave us is inheritance enough. The desire for money will never be an issue between us.

We all want whatever our parents would want. We simply vary as to what that is.

If my mom would share her room with another resident, it would save about $3,000 per month. This would never have been a consideration when Mom was cognizant of her surroundings, but now she isn’t.

She spends most of her time in a chair in the front lounge, sleeping or staring into space. She’ll engage with us a bit when we visit, but her ability to finish a coherent sentence is leaving her.

Three of us are in favor of her being in a semi-private room. Two aren’t.

I am one of the ones in favor.

I think about how my parents handled money and what they would have done with their parents in the same situation. They were practical and I don’t believe they would have wanted to pay this facility that much extra money when my mom does not even like being in her room alone (something she has told me). This is a definite change from when she first went in there, where she enjoyed holing up on her own.

Another brother thinks a semi-private room takes something important away from our mother. He believes regardless of the cost Dad would want Mom to have a private room.

Naturally, we have different ideas of what we believe our parents would want given these circumstances. Talking it out in person was critical. Instead of the frustration and miscommunication texting brings, we saw each other’s hearts. Even if we disagree about what our parents would have thought, we all want the best for Mom.

My brother (the one who agrees a semi-private room makes sense) suggested we wait another six months before making a decision. The three of us who believe this is the right choice want our other two siblings to feel good about the decision.

So, this is what we will do — have another in-person meeting in six months. I have no idea what will be decided, but overall, family harmony is more important than “winning”. We need these periodic in-person check-ins to stay in harmony and operate as one.

What I have Learned

This experience has taught me a lot about what I want for myself at the end of my life and the importance of communicating it to my family. No frills for me, and roommates are fine. I especially don’t care who the roommates are if I get dementia — but I’ll definitely choose my own if I am cognizant.

I have no children so it’s not a matter of inheritance to me. It’s wasting money on something that isn’t important.

We must talk frankly to our families.

My own never discussed the possibility of dementia with my parents because we never thought it a possibility. Still, we discussed money and other people we knew with dementia enough that I believe I know what my parents would want.

But five kids had five different relationships and experiences with our parents. We view the world through different lenses. Our opinions all matter — and when there is disagreement, sometimes you have to give the others time to catch up. We’re in this together.

There is no right decision. That would only be true if my parents could discuss these issues with us, knowing all there is to know.

In the meantime, we work together to stay together while doing our best to make sure Mom is well taken care of. And she is.

Her kids love her and make sure of that.

This article was originally published at Medium. Republished with permission from the author.