If you’re a caregiver to a person with dementia (PwD), hopefully you’ve been able to build a team of people who can pitch in to help you and your loved one through this unbelievably difficult time. But it’s also important to be realistic. You need to brace yourself for the likelihood that some friends and family may reach a point when they are no longer willing or able to participate as they once had. Some folks may start to disappear, especially when your PwD reaches Stage 5.
You think it won’t happen to you but it probably will, at least in some way. And I think it’s extremely helpful to emotionally prepare yourself for this reality. I remember the first time I saw members of the AlzConnected forum discussing how they’re “in it” completely alone with their PwDs. I thought for sure this wouldn’t ever happen to Peggy and me—but in many ways, it did.
Life, Interrupted
In so many cases, you have to remember that there’s really no blame to be laid. Everyone has their own stuff going on, their own life issues that could make visiting a PwD impractical or more of a challenge for them, that sort of thing. The reasons are many. I completely understood this in my own situation. Some loved ones may be living in another state or just a little too far to be of much practical help, or they may have young children and can’t get away. They may have their own health concerns, or they may be caring for their own loved ones in a similar fashion.
Take our cousin Nikki. She pitched in a lot early on after Peggy’s diagnosis; she gave emotional support to both Peggy and me, drove Peggy to doctor’s appointments and singing rehearsals, and ran interference with our brother Les. But Nikki was also taking care of her own parents, our Aunt Betty and Uncle Nick, and they were a handful, so her plate became increasingly full.
What a common scenario, yeah? One sibling in each batch of three cousins taking point as the family caregiver. That was Nikki and me, middle and eldest daughters in our immediate families.
Nikki was also dealing with her own shoulder surgery at one point during this same time period. So of course she had to pull back a bit in what she could do for Peggy. I harbor no ill will towards her for that. In fact, I was always in awe of her that she could do so much.
Those That Drop Away
A handful of other loved ones also retreated from Peggy duties over time, which I had to get used to. Peggy was a very social, friendly person, so she had a lot of people in her corner at the beginning of her illness—those who phoned her, who sent cards and letters, and who visited her in person. But later, as her symptoms worsened, a few folks essentially dropped out of rotation.
For example, my sister’s veterinarian (who took care of all of her various cats for more than 20 years) visited Peggy often in 2021 and 2022. But once the symptoms of Alzheimer’s later stages started appearing, she felt she didn’t know how to communicate with Peggy any longer. And she feared making the situation worse, so she eventually quit coming by to see her.
And I understood her decision, really I did. At that point, Peggy rarely made sense when she spoke, and that can be very uncomfortable to be around. To be honest, often I had no idea what Peggy was saying either! I just had to take my cues from her tone of voice. If she sounded happy I would say, “Yay! That’s great!” and if she sounded sad I’d have to say, “Aw, that sucks.”
But if I got it wrong, I’d be risking a meltdown—and that’s a near-impossible situation that few people can handle. Once a PwD begins moving into Stage 6, language becomes a real problem, particularly if they have primary progressive aphasia (PPA) like Peggy did. There were many times when all I could do was validate whatever Peggy said—even if I had no earthly idea what she was talking about. It was a delicate balance, but I think I did well with it because I was her sister.
Those That Stay
So, yes, some people may disappear, and that sounds grim…but you may be in for a lovely surprise. Others may step up to take their place. As time went on, Peggy’s oldest friend Dodie began calling her every day. And once Peggy moved into memory care, her best friend Michael made sure to visit her in person for several hours every other day.
Another of my sister’s close friends, Janelle, came back into the picture during the last six months of Peggy’s life and played a vital role in her well-being. She was strong, capable, and resourceful. I marveled at her abilities, especially her ability to get Peggy to eat—to me, she was the Peggy Whisperer. I’m not sure why Peggy always followed her lead, but I think it might be because her physical appearance didn’t change that much from when we were kids. Peggy instinctively knew her and trusted her, and remembered her until the end. She was a godsend.
I was so grateful for this good fortune, especially because I hadn’t expected it. Peggy had two really close friends, neither of who I knew very well in the beginning, who actually showed up for her and stayed with her (and me) until the end. And that’s a big part of how Peggy’s needs were being met. I kept waiting for them to disappear, and I wouldn’t have blamed them if they did. But they were stalwart, and I will always be grateful for them.
That’s the funny thing about life as a caregiver. Many helpers may show up, but will they disappear, or will they stay? You’ll never know who will fall into which category until it happens.
Lessons Learned
So all of that was a big learning experience, which I hope to now share. My big takeaways are:
1. You, the caregiver, are ultimately on your own in this. The buck stops with you, and it’s best for you to be prepared to handle everything on your own—just in case.
2. Be prepared for when friends and/or relatives disappear from your life and from that of your PwD. Try not to judge them, because they often have very good reasons for disappearing. Maybe they’re caregivers themselves and don’t have any extra bandwidth. Maybe they don’t know what to say or do around the PwD, and don’t want to make things worse. Or maybe they’re just afraid.
3. Be prepared to accept the help of those who step up when you least expect it. If someone is offering, that offer is highly likely to be genuine. Even if you don’t know the person very well, if they’re trustworthy, consider accepting what they have to give. It will benefit you, but will greatly benefit your PwD. In my case, seeing the smile on Peggy’s face when one of her good friends showed up in her memory care room was worth any of my doubt (not that I had much of that).
I also think it’s a wonderful idea to seek out advice from other caregivers who have been through this experience, even online. Over the last almost six years now, I’ve spent a lot of time on ALZConnected and I’ve learned a lot from all of the other caregivers there.
You Are the Cavalry
In fact, one member posted one of the most useful things I’ve ever seen: “The Cavalry Is Not Coming.” If you’re becoming overwhelmed with Alzheimer’s caregiving, this post is for you.
Here’s an excerpt:
Since I posted last, I have taken on the point of view that “The Cavalry Is Not Coming” to epic levels. My wife’s well-being today, as well as my future life, is completely in my hands now. I am now the King of the Castle, Lord of the Manor, Large and In Charge. Yes, I still have meals to cook, dishes to wash, showers to give, medications to manage, diapers to change, and a full-time job to boot. Life is busy, difficult, and exhausting. But I have some measure of control, and I can call all the shots. That ugly picture on the wall? Gone. Pizza night again? You bet. Two hundred cookbooks on the shelf? We only need twenty.
This house needs to accommodate my needs so that I can best take care of my dear wife in these final times. That means removing tripping hazards, redecorating in a light and happy way, and decluttering to the max. There is a feeling of relief when you just let go and realize that no one is going to help you. The kids (if you have them) are busy building a life of their own, and friends and family have their own problems to manage. I have lowered my expectations to nearly zero, and it has been very liberating. If you have reached this stage (or passed it), you understand. If you are still frozen, kicking and screaming for help, hang in there.
Look around you and remember, The Cavalry Is Not Coming.
I think this is really great advice. After reading his post, I realized that, for my sister Peggy, I was the cavalry. And for your own PwD, you can be the cavalry, too.
