The Cavalry Is Not Coming: 9 Year Edition

Bill_2001

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

Russinator

Thank you for that wonderful post. I enjoyed reading it and learned a few things from it.

Medric

I needed to read this . Sums up what I thought and confirms what I thought . The Cavalry is indeed not coming and realistically what would they do ? They’d probably want me to water their horses .

SPin-need

Thank you for this. It gives me comfort.

Jgirl57

Great update!! Thank you.

Biggles

Third time I have read this it states the obvious so well. I checked my diary notes it’s 1 month since I let loose with words 1 month since I desolved into a bucket of self pity tears 1 month since I realised I can do it!! 1 month since I realised The Cavalry Is NOT Coming. Thank you. I am in charge totally; and hang every body else ie family, friends, doctors etc. My DH 8 years in, almost non-verbal, difficulty walking, eating, and all the other bits; we go disability sailing each week, care facility on the bus each week giving me a short space, milkshakes from our favourite shop and walk our new puppy in the park, where I meet other puppy owners and have my fill of chatting. Life’s so full of challenges 24/7 but it is full. I have a pot of lemons brewing on the stove soon to be marmalade for our breakfasts which we have outside every day with the birds at about 6am. My DH is asleep on the couch next to me while I vent, we are waiting for the groceries to be delivered. It’s so hard and demanding but The Cavalry is NOT Coming and I can do it! Thankyou.

Aarron

love this! It’s all so true and refreshing to read I’m not the only one going through this horrible disease. I will be saving this. Thank you.

Eleccon

I told this to myself after the first time I read it. I would repeat it as I was doing my chores to take care of my DW. She passed three weeks ago. I only posted a couple of times, but I read a lot. I want to thank all the people who post with their experiences and insight. I wouldn’t have made it without you. You are the Cavalry!

White Crane

Bill, thank you for reposting and updating this. I know how much it helped me the first time I read it. My dear husband is now in memory care, but I still need to remember that the cavalry is not coming. The last few months I’ve been in charge of making sure he’s getting the care he needs, doing all the necessary paperwork to apply for Medicaid for him, becoming his representative payee for Social Security, selling our home of 52 years and buying a new one. Taking care of all the problems that arose trying to get the new house ready to move into, changing all the addresses that needed to be changed and all the accounts that needed to be opened or closed, and finally living alone and taking care of myself even as I make sure that he is getting the best care possible. It’s hard work, but it’s important work and I am grateful to God for being able to do it. Thank you again, Bill.

Maru

https://alzconnected.org/discussion/71052/the-cavalry-is-not-coming-9-year-edition

Thank you for this insightful post. You put into words why I sometimes feel so overwhelmed. I am the everything…housewife, banker, yard service, gardener, maintainence supervise, social director, caretaker…the everything. I have already figured out that the two kids we have living in the same town will do what they can, but both are already overwhelmed by family responsibilites.

I live with my Bible opened toPsalm 18 for those moments when it feels like this is too much. This battle is easier now that we know what it is. I don't need to waste my breath and energy "reminding" DH of something he needs to do or something he said he will do. I just do it. Acceptence for me has meant letting go of anger or hurt feelings and all of that. His brain is broken and the only thing that is going to change is that is will get more broken as time marches on. And, as much as our children love their father, and they do, no one is going to come to rescue us/me.

I still have lessons to learn from this … how to let go of pride, how to ask for help when I really need it, how to accept help when I maybe don't think I need it.

Prayers for you and all of the caretakers on this journey.

Nowhere

Calvary, no? Family, probably not. God, Nature, The Universe, or whatever you might call the Supreme Being, yes! One can be held in peace and love through faith which delivers promise of everlasting renewing spirit, life, and love. Grace comforts and restores that which is broken over and over and over again. Surrendering my will to God (Nature) is how I’ve found peace in this horrific disease. We are made of elements and these elements are all the same elements that have ever been on this earth and are of the universe. Look to nature and see the transformation of life. It’s awesome and the sick, frail, and healthy are all a part of it. Thank goodness we love and care.

PattiRN2

I just posted, “When it rains it pours - for real.” Finding your article gives me hope. I keep saying and resenting I am responsible for nearly everything and it’s so hard. I have had glimmers of feeling like I am now in control, saying it to myself in a positive way, but the feeling disappears and I fell overwhelmed. I love your honesty in the Cavarly is Not Coming. I’m realizing that - people always ask if I have support and I do, but the truth is - it all comes down to me. I’m the Calvary, the cook, repairman, the banker…and I’m going to print out your story and reread often for strength. Thank you!

JM27

Thank you so much for sharing this! I needed to hear this. I have really been struggling with the responsibilities I have had to take on with my LO and this was very helpful.

I also loved someone else posted even if the Calvary did come they would probably want me to water their horses. I had to laugh because that is exactly what would happen for me.

This is a great reminder for me to stay strong and keep pushing on. Thank you so very much!

jsps139_

Thanks Bill. I read your post often, so thank you for updating it! It always makes me calm and accepting that friends and family have their own issues to deal with so why should I expect their help?? If they offer, great! If they don’t, great! Self-pity goes out the window after I read “The Calvary Is Not Coming.” I hope you know just how helpful and life-changing your post is to so many of us! Thanks again!

sbcspin

https://alzconnected.org/discussion/comment/227444#Comment_227444

Very true!

miaR

Hi Bill,

I read this and save of course as I too chug along in this horrible nightmare illness.

Sending hugs back to you and all who read…Xx

Carmen M

Thank you for the post. It hit home and sometimes I need someone to tell it like it is or is not!

bwanasil

https://alzconnected.org/discussion/71052/the-cavalry-is-not-coming-9-year-edition

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.

So very true !

fmb

TTT

Lilydaisy

I had not seen this before and find it a solid reminder of our need to take control as the caregiver. Decisions are less and less made by both of us. Fewer tasks are done by both of us. I am now both my memory and hers and need to know where everything is placed. I will get welcome help from local children but will not expect it to become significant. I have to own it. Thanks for all your candid thoughts and facing reality.

brs

https://alzconnected.org/discussion/71052/the-cavalry-is-not-coming-9-year-edition

Bill, I so appreciate this update. When I joined this group earlier this year I read your post when suggested by another member. Your experience resonated with me and brought insight. I've quoted you often, "The Calvary is not Coming". I can now say this with self confidence and not feeling sorry for myself. As I said to the Dr last week, I know I can this yet acknowledge my human frustration. Sending you many thanks.