The Cavalry Is Not Coming

Quilting brings calm

There is no cavalry.  Describes us all to a T.  It is somewhat different for those of us whose PWD is a parent and who are in assisted living.  At least I can sometimes sleep at night.  Like others, I am dealing with anger, and fear and an extreme amount of stress.  I don’t have to elaborate because you all know what daily life is like.  

I think it would  be somewhat better if I knew the timeframe this would go on for.  Is it 2 years or 10 or more? Am I going to be able to enjoy any of my own ‘tarnished golden’ years afterwards or will I go first?  What about my spouse’s health -  will he go before my PWD?  Could he end up with dementia too?  I’ve seen many people taking care of their parents and  then their spouse. 

Gig Harbor

I agree that knowing a timeline would make things so much better.

Northeaster

Thanks so much for your post. I've thought about it several times over the past week. It's motivated me to get moving and take care of things myself rather than being frustrated that my DH's family doesn't help and that his friends have stopped calling. 

You are right, the cavalry is not coming so I need to stop waiting for them. I've changed my mindset and have started to focus on what needs to be done for both my DH and for me.

Thanks.

nancyj194

Thank you Bill. You wrote it so very well. I keep re-reading everything you said.  

Indeed, we are it.  No one else is going to step in until the move is made to a MC facility or the journey ends.  

The stress and anxiety is all ours each day, for we are it. 

There is no calvary out there that will ride in on white horses to save us.

We are it.

Hang in there dear one, for you are among friends.

DJnAZ

Very well said, Bill.

If you have no objections, I would like to copy and share your thoughts with an Alzheimer's Care Givers support group I attend. 

JudyMorrowMaloney

When my DH was first diagnosed with FTD and his behavior was out of control, I spoke with a social worker hoping she could help me find a place to put him.  During the conversation, she stated "Nobody is coming to rescue you."  I was flabbergasted and thought "What an idiot she is."  Well, looking back, I hate to admit it, but she was right.

Faith,Hope,Love

Well, Bill, you are right.  I posted earlier that I understood what you were saying but I wasn't quite there yet in accepting that the cavalry wasn't coming.  Within the week, the car broke down and we had to push it out of the intersection, get it towed and it's still in the repair shop.  DH fractured his shoulder cap and a couple of back ribs and ended up with a 3 day stay in the hospital.  At the same time, hurricane Ian swept thru our state, and I sat in a big old house alone and scared.  At that point I realized you were right.  The calvary isn't coming!

ghphotog

Well said. After four years I also know nobody is coming to help save a few friends that help with food from time to time.

Gig Harbor

Bill and ghphotog can I ask you what foods you like people to bring? Now that my husband is in care I don’t cook much but I have friends who could use help. I never know what to bring.

Bill_2001

Greetings Friends,

I am happy that my post here has helped so many people. Sometimes, we just need to hear the truth. For most of us, that hard truth is simply that we are on our own, and no one is going to help us. The Cavalry is not coming.

Since I posted this a month and a half ago, I have been asked if it is ok to copy/share my original post. YES, by all means. If you believe it will help others, you have my blessing to share my post – in any form that helps. I have passed the seven year mark now, and the Cavalry is still nowhere to be found.

I have taken my own advice and assumed the position of King of the Castle, or as eaglemom says, “Captain of the ship.” I have gotten rid of a lot of items that clutter up my new care giving life, and I have more to go. My loved one will not know the difference and at least I can have the clean, uncluttered house I have always wanted. Every little bit of control I can take back helps.

We eat what I decide, I cook when I feel like it. Otherwise it’s take-out or Marie Callender again. No more cheap diapers trying to save a buck – Tena is worth every penny. Bathroom accidents are far easier to manage when it is all contained reliably. Seriously – don’t cheap out here!

As self-appointed Lord of the Manor, and with no one competing for the title (remember we are on our own), I have cleared my calendar of stressful recurring events that no longer serve any purpose. Some were my dear wife’s commitments – who cares now? If you still feel compelled to keep up with social events that meant something before your loved one had dementia, seriously consider dropping them if they are just causing stress. Free yourself – you are the boss now! Caregivers are already pressed for time, so free up as much time as you can.

There was another thread about the regret of tossing a loved-one's possessions out too soon. Everyone has different feelings on this subject, so just do what makes your care giving journey more tolerable. My wife had 200 cookbooks. I had always wanted to pare down that collection even before the dementia, but now I can do it. It would break my heart to toss them all, so I kept 20 of them. Compromise if you must. Does your loved one have a large eyesore item that you have always wanted out of the house? If it would break your heart to just toss it, take a picture of it, then out it goes. You are in charge now. This is your house, and it must work for you now, not against you!

Keep the doctor’s appointments and meet-ups with people who understand your situation. The holidays are coming; think long and hard before committing to all of those stressful get-togethers. I have found that many people wanted us to be with them, only to pair up and leave me “alone” with my dear wife (which means I really have no one to talk to). Skip those events. My attendance made it fun for them, not me. I am not suggesting isolating yourself, but limit your visits to those people who actually talk to you.

Spend money on technology and services that will help you live the best life you can. Prepared meals, cameras, alarms, good diapers, lawn-mowing services, and massages, whatever it takes. First class service and technology still costs far less than placing your loved 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.

Remember:

You are in charge now. Unload the clutter: Objects, commitments, even people. Dementia care giving is pure hell, so make every other part of your life as pleasant as you can. No one is coming to help you, so no one can tell you what to do, either. Most likely, we will be in this ordeal for years, so take control of as much of the journey as you possibly can.

With Love,

Bill_2001

Cherjer

Great post, Bill!  How long having you been caring for your DW? Do you have caregivers come in to help?

Cherjer

Sorry Bill...just reread your earlier post and stated that DW has had AD for at least seven years.

OrganizerBecky

Thank you, Bill. Such a helpful post. I think my DH and I are on about the same timeline as you and your DW. I, too, am still working fulltime. I did get permission to work from home soon a couple of days a week. I am looking at day programs or PACE for DH. I'll have to get him approved for Medicaid if he goes to PACE ($5K a month private pay - nope). 

There is a certain peace in finally just accepting the facts and moving on from there and you put it perfectly. 

nancyj194

Another great post, Bill. Thank you for the timely words of wisdom. I'm printing this out so I don't forget. 

N

michiganpat

Thank you Bill. I have read this many times and sent it to my sil as my brother also has dementia. She was as affected as me. Thank you again.

ImMaggieMae

Bill, thank you for posting. You mention Tena underwear/diapers. Tena has several different types of products. Which one for overnight for DH? Preferable underwear style.

Bill_2001

For those that have asked, here are the Tena Incontinence Underwear that have worked wonders for managing my wife's condition.

(Underwear generally means the garments without the tabs. The term briefs is used for the ones with tabs.)

For daytime use, she wears these.

Amazon.com:TENA Incontinence Underwear for Women, Super Plus Absorbency, Small/Medium, 18 Count : Health & Household

For overnight (or for longer outings), she wears these.

Amazon.com: TENA Intimates Incontinence Underwear for Women, Overnight, Small/Medium, 64 Count (4 Packs of 16)

I swear by both of these. They both contain "number 1" flows with no leakage and make managing an occasional "number 2" accident much easier to deal with.

JJAz

"I have lowered my expectations to nearly zero, and it has been very liberating."

  Bill, thank you for sharing this.  I have shared your message with my Lewy Body Dementia group and it has gotten amazing feedback.  Changing expectations and accepting the "new reality" is truly a gift.  I too learned this somewhere in my husband's journey.  He's now been gone for three years, but I still call on this new skill frequently.  Most recently, we found out that my grandson is likely permanently disabled.  I have been shocked at how quickly I moved past anxiety, fear and pain into a place of acceptance.  Again, thanks for sharing.

dayn2nite2

Bumping for the newer people, a great read about how freeing the acceptance of the situation we're in.

tigersmom

Bill, thank you so much for this post. Of the many wise things I have read on these boards, this struck me the first time I read it as one of the wisest. I have come back to it many times since. I am only 1.5 years into this journey, but your words give me the courage to think I can forge my own path through whatever comes next.

TyZay

Bill, thank you for your post.  I am in the “frozen, kicking and screaming” stage.  You have hit on so many points that ring true for me that I want to print your post and have readily available to read.

Arrowhead

I never read any posts that are that long, but this time I felt compelled to. My wife is in stage 6, and you did a great job describing my life. I take care of her, but beyond that, I do what I want to do. I’ve made quite a few changes to our home and decor. I’ve changed the ways some things are done. Family and friends are just as you described. They are supportive, but 99% of it all comes down on me and me alone. 

The Cavalry is not coming, it’s already here. I am the Cavalry.

Northeaster

Thanks, Bill, for writing this post.

I have reflected on it many times when I begin to feel frustrated that my DH's family is not helping when they said they would and when I'm feeling sorry for myself. This post reminds me to just get moving and get it done because the cavalry is not coming, it's me.

Love this post!

Otterly

Bill, thank you for this insightful post. I left this forum realizing that I wasn’t “there” yet. Being a caregiver is a lonely role. But it has given me a mission and I’m happy that I’m here to do it.

LauraCD

Bill,

Thank you for your post. You write and write about this so well. I am new to the disease (though I believe I was in denial for near three years minimizing my husband's own concerns about his brain not working the right way) and new to this forum. I appreciate so much of what so many share here. I'm terrified of the journey I am beginning and realize I am truly alone in this. But, I will take advantage of that which is shared by people like you to realize that there is still somehow a connection worth looking for.and holding onto in this tragic human experience.

Sherry LD

Bill,

thank you for your post! I never thought it would come to this but my DH is in early stages ,but as others have said he knows how to work the doctor during early appointments. He has been deemed “stable” from six months ago and I have bit my tongue in order to not “rock” the boat. No help from his DD so I have come to the same conclusion- The Calvary is NOT coming. I will keep reading and posting with requests for advice and do the best I can. A huge shout out to the awesome people in this community for their support!

Denise1847

Bill,

I think you should write a small book describing your perspective and journey. You are such a good writer and your perspective has already served so many of us. It manages our expectations and empowers us to "pull ourselves up by our boot straps" and get going. Thank you Bill.

ButterflyWings

(((Bill))) - So glad to hear from you as I have been away and did not see your original "attitude adjustment" post. I LOVE this. It is actually how we do life around here too. And it beats fear, fury, defeat, and hopelessness by a long shot.

One of the first things the diagnosing team told me was "you're in charge now". Then they let that sit. Silence, but with very worried facial expressions. I knew I was in deep blue glove territory (would not have understood that reference back then, but I sure do now, because the 2nd thing the neuro said, was check out AlzConnected and learn everything you can from the members who are the most experienced group there is.)

I agree 100% with your perspective! Of course, we don't enjoy dementia at all. I hate it with a passion, in fact. But like you, I do find many moments of pure joy, acceptance and peace -- sometimes at the smallest things -- as I've learned to see what "is" at any given time, and just roll with it. My call, and we are doing pretty darn well when left to our own devices. Unfortunately, I have been literally attacked by an opposition team, who is like the anti-cavalry so we will have to see how that plays out. I think I will apply your same approach to that challenge too.

viarail

Thank you for this post. I am still praying for a miracle.  THE CAVALRY IS NOT COMING is a really good way to remember to lower my expectations to zero. It is also good for not beating myself up. Unconsciously, many of us feel guilty for bad situations, even when we had nothing to do with them, and no way of forecasting them.

JC5

loved this then love this more now ! Thank you!