The Cavalry Is Not Coming: 9 Year Edition

This is an updated version of The Cavalry Is Not Coming. I repost this occasionally as I have been informed that this article has helped many caregivers. This edition is mostly the same, although I have brought it up to date and revised it to make it more helpful.

October 1, 2024 marked nine years since my wife’s dementia became obvious, and that I knew for certain that this journey would begin. I had sensed something was “a bit off” before then, but that date stands out as the moment that I knew with certainty. I use the date October 1, 2015 as the beginning of this journey.

I wrote this with a light heart and a feeling of optimism that I had not felt for years. Nothing has changed – my wife is still in the throes of dementia, and I am certainly still an exhausted, burned-out caregiver and fulltime employee. I had the opportunity to take a modest buyout and retire this past summer, but I declined to do so. I decided that retirement is not quite appropriate yet; with my wife’s condition, I still need the distraction that work provides. I have not placed my wife in a facility – she is still at home with me or at the adult day care while I work.

Rather than post a hopeless, angry rant filled with strife, I want to share with you how one of my greatest fears has come to pass, and how it is actually a relief. My fear has always been the following:

The Cavalry Is Not Coming.

I have spent many days frozen in fear of being alone: Afraid of being left emotionally, physically, and spiritually alone. Alone in feeling my way around in the dark, trying to navigate dementia caregiving as best as I can. Many of us on this board post virtual cries for help, and I have done that many times. I have gone into this ordeal kicking and screaming, which is a perfectly natural reaction to a trauma of this magnitude.

Some measure of peace and calm is found in simply discovering that the Cavalry Is Not Coming.

Family and friends mean well, the medical community cannot do much for a terminal illness, and non-profit organizations do what they can to educate us and mitigate the damage. There is not much anyone can do to help us. We are on our own. Doctors and nurses sometimes still ask my wife questions directly, even though she has not been able to understand or respond meaningfully for years. Instead of getting upset at their cluelessness about dementia, I just gently respond and remind them of her condition.

In over nine years, I can only cite one time that I had true, respite level help without a pricey invoice arriving afterword. Once, in nine years.

In times past, I would have been bitter and angry about this, but I have finally arrived at an important conclusion. I am on my own, and no one is really going to help me. I am no longer bitter about this, as I have finally realized that other people have their own crosses to bear. Odd as it sounds, there is a peace to be had in such a revelation.

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 fulltime job. 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.

This has been the most helpful realization in this long journey, even nine years in. I have reinvented our lives entirely; I am in charge of it all, and I have become The Protector, The Problem-Solver, and The Boss. I realize that caregivers have differing talents and tolerances, but look deep inside you for strength and resilience. You may find you can handle much more than you ever thought possible. My wife always took care of me, and I was terrified when I realized what was happening. We made such a great team together, but left to my own devices, I predicted disaster. Slowly but surely, I took on one task at a time, sought support and answers from others, and powered through it. I have no idea how much longer this will go on, but I have resolved to just take one day at a time.

There is a feeling of relief when you just let go and realize that no one is going to help you. Your children and others are busy building lives of their own, and have their own problems to manage. I have lowered my expectations to nearly zero, and it has been very liberating. If you are still frozen, kicking and screaming for help, hang in there. Look around you and remember, The Cavalry Is Not Coming.

Here are a few additional suggestions since I posted this last. YouTube travel videos are amazing. My dear wife and I used to travel, and there are many YouTube channels that will fit your style of travel. We also have “music nights,” where I will play one or two of her favorite artists. My dear wife is still reasonably mobile, so I take her for short walks around the neighborhood. I also purchased a transport chair, so I can take her with me on longer walks in local parks. Getting my dear wife to eat (enough) is becoming a challenge, so once I find something she seems to like, I rotate that into our meal plans. I find that finger food helps, as she is becoming less able to use utensils correctly. Drinking enough water has also become a challenge, so I mix in some Crystal Light and use a cup-lid-straw combination. Less mess, and she drinks from a straw just fine.

You may not be able to defer placement indefinitely, but you may be able to manage your dear spouse for one more year (or however long) by making simple adjustments to your home, your lifestyle, or your daily choices. Do not be afraid to get creative with solutions. You are in charge now!

Utilize services that are available. Keep up those doctor appointments, call the Alzheimer’s hotline (800-272-3900) when you are overwhelmed, grab takeout, call friends and family to talk, or even ask a small favor. Make everything as safe and foolproof as possible. Be sure your loved one cannot lock themselves in the bathroom, or that you cannot get locked out of the house. Secure anything hazardous. You are the Safety Inspector now. Spend money on technology and services that will help you. Buy prepared meals, cameras, alarms, good diapers, lawn-mowing services, and massages, whatever it takes. First class services and technology still costs far less than placing your loved one in a care facility. You are performing a monumental task – taking care of an adult full time without the help of your dear spouse. Utilize all those goods and services! If something does not work out, you can try something else.

Do not expect anyone to be there to help you change your loved one’s diaper, make dinner, or wash dishes. Get the mindset that you are on your own and take control of it all. Your loved one can no longer help and can no longer make decisions. Take a deep breath, and say “I am on my own, and I am doing the best that I can.” I really hope this makes you feel better. This is a horrible situation to be in, and sometimes realizing that you are on your own is just what you need to hear.

This also means that the decision to place your dear loved one in a care home is yours alone. No one can tell you where you are on this journey, and no one can tell you how exhausted you are. You are on your own, no one is going to help you, The Cavalry Is Not Coming.

With Love,

Bill_2001