The Lost Years

Bill_2001

It has been over six months since I wrote The Cavalry Is Not Coming, and I am happy that my message was able to bring a measure of clarity and peace to so many of you.

That message summarized my experience with the fact that we are alone in this ordeal: No one is really coming to help us, the medical community is powerless, and friends and family can do nothing but wish us well. At some point in our long journey as caregivers, most of us will see the day when we realize that all of the kicking, screaming, and crying is just wasted energy, and that all of the noise we make comes back void. Odd as it sounds, that day brought relief and perhaps even a bit of joy to me.

I took full control that day.

But, what has happened since then? Coming to terms with my situation helped a great deal, but the reality of the end of my marriage to a wonderful woman looms large. I am lonely, and I long for the warmth and care of a real wife. That has not changed.

What has changed is that I have lost over seven years of my life along the way. I read the posts on this forum, and each one reminds me of the day that my wife went through that stage. Most of the large losses are behind us now as she reaches the latter part of Stage 6. Her mind, intellect, personality, skills, and memories are all gone now, and she is a living shell. She still walks, eats, and drinks, albeit slowly and not always without some resistance. She speaks although her words make no sense. A box of her childhood memories fail to stir up even a hint of remembrance. There is no one left in her family who wanted it, so I threw it away. She tried to eat her wedding band, so I put it into safe keeping. She can no longer sign her name, and no longer knows her own last name. She has those empty dementia eyes that I can now spot a mile away on other people.  She is double incontinent. The losses are too numerous to list now.

I have entered The Lost Years. Friends and family have their own lives to live and have slowly moved on. I noticed today that one of my friends has not visited us for more than a year. After all, how much fun are we now? We are no longer an actual couple; while my buddy and I talk, who would his wife talk to? Rather than visit us, it is easier for them to just visit other friends. They will visit us “another time.”

It has been four years since we traveled. I would estimate that my wife was at Stage 3, and that trip was a challenge. Traveling is no longer worth the effort, as it would just become a race to find the nearest restroom. It would not be fun for me anymore. Another loss.

I have been busy with home improvement projects to keep myself engaged and active. These projects have been a nice distraction. Some of these projects I do myself (like major de-junking), and others have required contractors.  Our traveling budget now goes into home improvement. I have been attacking our basement with a vengeance, throwing things away I intended to keep forever. Knowing my wife doesn’t care anymore, everything just looks like clutter to me. Even my own family photo albums met the trash bin. (I do have digital copies.) There is nothing like a major plumbing/sewer line/sump system installation and renovation to motivate you to de-junk your basement. In doing so, I have run into so many memories – my own and my wife’s. Much of it no longer brings joy, but sorrow. So guess what? OUT IT GOES.

Our happy memories stopped around 2015, which was the time my wife began showing certain signs of dementia. I found heart-felt cards and letters my wife wrote to me – all before 2015 – and nothing but The Lost Years since. Cue the sound of a ton of bricks landing on me. I have not been loved since 2015. I am in my late 50s, still in need of love and affection, and still fully functional if you understand my meaning. All dressed up and no place to go. Another loss.

I showed some of those cards and letters to my wife, and they were meaningless to her. I did not have the heart to throw them away, since they are the only proof that someone ever cared about me. I have been scanning them to digital, just in case I ever do part with them. Gotta love technology. You can get rid of stuff, and still keep it.

So, what are The Lost Years? In my view, they are the years that we spend caregiving, while getting nothing in return. We no longer receive help, companionship, or even much sympathy anymore. It may sound harsh, but after so much time, no one really gives a shet. We have worn out our friends and family with our constant anecdotal stories about what our loved one did/did not do/whatever. They have slowly pulled away and moved on. They are attending weddings, having grandchildren, traveling, going out to shows and restaurants, playing games, and having real conversations. We may be worth an occasional phone call, or a short visit while they are “on the way” to somewhere else.

I have spent most of my 50s as a caregiver. I still work full time because I am too young to retire, and work does provide a measure of socializing and distraction. Your 50s should be one of your best decades. For me, it has been a decade of The Lost Years. What will it feel like when this is over? Will it feel like I have emerged from a coma, wondering where all the time went? Seasons are changing, kids are growing up, trends are changing, friends and family are doing things and going places, and I am missing all of it.

So this is my post for now, The Lost Years. I wanted you all to know that I am still here, still slugging on, still caregiving, with no end in sight. This is the long morrow, the era of unending sameness. I am still here carrying on, losing another day of my life to the monster of dementia.

Twin Mom

Once again you nailed it.  Thank you

Sligo177

Bill,

I was glad to hear from you even though I am so sorry your days are impossibly difficult now.  You state things so clearly. I hope that you will find peace at times, and reasons to smile.  You have many years ahead of you, and I hope the joy of life returns for you.  I will be thinking of you.

PookieBlue

Bill, 

Your words resonate so ditto. I think we all need to create an alternate happy life, somewhere, somehow. The need for love and appreciation is always there, but it is just a big unfulfilled void. Don’t lose hope. It sounds like you are a terrific man with so much going for you, yet so many challenges ahead. You are still young enough to have a life ahead.

Ed1937

Bill, you have a way with words. Like Twin Mom said, you nailed it (again). Your profound pain is evident, and I'm sorry for that. Yes, you lost some important years, but you can still find a reason to look towards the future. You have time on your side.

Whyzit

Bill it is so nice to hear from you and I want to thank you for your entries . You are a lot younger than I but at 81 I relate to so much of what you feel and experience. I read your Cavalry is not coming over and over and it did strengthen me. Now I get to ponder your current entry and at year 13 on this “journey “ I can see many things, events etc. that I have missed along the way. But, on the other hand, we learn to evaluate what and who is important in our life. When this is all over I think we will be able to determine what is worthwhile and what to pass on. The same is true for relationships. Some we may wish to spend time with for purely entertainment purposes but the few we can have a deep meaningful conversation with, we will treasure. So as you clean out the stuff in the basement realize everything and everyone has a season. When your season no longer matches theirs, let them go and reach out to those new people who will enter your life. There is always hope in new beginnings if we don’t get stuck in the past. God bless you!

Dio

Bill, thanks for another wonderful post! Your latest post is once again so poignant and touches our heartstrings deeply. I often recite "the cavalry is not coming" in a twisted way of comforting myself through difficult times. A reminder, of sorts, to pull up my boot straps and keep marching on, because there's only me to shoulder everything while DH is in a completely different reality. I've been on this journey just under 2 years and I already feel as though I'm not just losing my life, but I'm losing me. I long so much to pick up my paintbrush and slather my favorite colors onto the canvas, but this one is a bit too much to handle at the moment. I long for the lunches or dinners with family and friends, the theater/concerts, travel...things I used to do that are now just a fleeting thought. What helps is if I squeeze in a favorite meal or tv show. These little enjoyments here and there help me get through the day/week/month. So, try to squeeze in whatever enjoyments you can and perhaps it can help you regain some lost time, if not all.

RobertsBrown

Hi Bill,

Appreciated, downloaded, and saved.  Yes, I stole your shet.

I have a few good friends left, mostly continents away.  I share my life stories with them, but once in awhile I find a nugget that gives the big picture, but from another author.

This time it's you.

Thank you.

Rob-

Josie in Podunk

6 months.  I did not realize so much time had passed since that post.  It touched me so very deeply that I have re-read it numerous times without realizing the date of the original post. And now…here’s another that resonates like church bells.  And, it does so because this is where my mind has been of late.

My Handyman is nowhere near where so many here are.  There is yet much he remembers and can still do.   Still…we have already seen friends fall away we once shared interest with regularly.  We are no longer in that circle and so have fallen by the way.  

Family…other than those living in our very tiny neighborhood in the boonies who see us regularly…has also drifted off.  He no longer has the ability to engage with them as they would like and they seem unable to meet him where he is.  I can’t hate them for that.  It is inevitable.  It does make me sad, but I have learned a whole lot of “it is what it is” over the last 9 years…the 2 before Dx and the 7 now following.

There is much he has forgotten about our early years together (19 this July) as wells as the 31 years from his first marriage.  (we are both widowed)  Important dates are all mine to recall and act upon.  I know there will be much more of those losses down the road.

At any rate, thank you for your words and for giving a name to my own thoughts on the subject…The Lost Years.  There’s a book in there somewhere.

I also thank you for the idea to save digitally those things that are dear and begin my own task of downsizing.

May we all find a measure of peace.

LJCHR

I am new to the discussion board and read your post today.  I was so intrigued I went back and read your post on "The Calvary is not coming".  That is how I'm feeling - DH dementia is not as far along as your DW, but I am feeling the strain of being alone with this.  I have wonderful stepchildren, but they have their lives.  My stepdaughter is fantastic, but always wants to be upbeat for me - but sometimes I just want to be sad and share that with her.  I find myself involving them less and less and taking on the task alone.  DH was diagnosed August 2021, but I had seen subtle signs before then.  I'm not sure how to determine what stage he's in but I can see digression in the last few months. 

I lost my 1st spouse suddenly at age 56 - have been married now for 13 years.  The grief was unbearable with 1st loss but this grief is "ambiguous grief" that has no end.

Your challenge is very real and I cannot express how truly sorry I am for you.  It is a horrible disease.....

May God give us all the strength to endure.

Thanks for sharing, this has helped me.

Kibbee

Bill - So much of what you talked about hit home.  Regarding friendships, our "couple friendships" have taken the hardest hit.  It's been a while since our couple friends called up and asked to hang out.  The last few times they did come over, it ended up being a conversation between three people.  DH was kind of off on the sidelines since he has problems keeping up with the pace of group conversations.  Since then I have told his guy friends they should come alone, sit with him one on one and watch a movie.  Unfortunately, no takers.  Luckily DH seems unaware of his lack of social connections, and appears to be happy on his own, watching endless movies.

I have a circle of friends that I do get out with a few times a month.  They understand that I need to plan ahead because I have to get a caregiver to stay with DH.  They have also been good about hanging out at my house sometimes, so I don't need a caregiver.  Those social connections keep me sane!

Traveling...what's that?  The only trips I've been on lately are to the grocery store and Walmart!  But I find myself dreaming of traveling.  Nothing exotic, I just want the freedom to get on plane and travel to see friends in NC, TN and WA, and maybe a trip to the Oregon coast, and out west to see the mountains.

Many of my friends are now reaching retirement.  I'm watching as they cash in on their hard work, traveling, socializing, enjoying their lives together, with the excitement of their children's weddings and sweet grandbabies on the way.  They've earned this and I am happy for them.  But.  I feel stalled, stuck, trapped.  I know I have to suck it up and do the best I can right now, but it's hard sometimes.

michiganpat

Is there a way to send Bill's post to my email? I want to save it . And thank you Bill for your insightful posts. They mean a lot to so many of us.

White Crane

Dear Bill, as always, your post hit  my heart   I feel your pain, even as I feel my own.  Our situations are different yet pretty much the same. I will soon be 77 years old and long to be able to travel once again or to just go for a long walk by myself.  My DH is Still fairly high functioning, but gets confused easily.  He still tells me he loves me, and we still laugh together sometimes. Other times, the confusion of Alzheimer’s leaves me shaking and crying.  Lost years?  Yes.  And yet  I love this man and want to be able to take care of him.  Thank you for your post, Bill. Sending hugs.

Brenda 

toolbeltexpert

Michigan pat if you hit print at the top of the page when it brings up your app to print chose save as a pdf. Or just copy and paste.

Bills I was glad to read another of your posts as always clear and concise.

I am in the final stage of downsizing I close next week on our farm and a new house closer to where dw is in mc. Yes the burdens of pictures not only shear weight, I have several hundred pounds I have moved and plan on sharing with family, but the emotional burdens each one carries. I have been posting on Fb what I call "Drawer finds" my dw saved every card invite. Yesterday I found a card from our wedding that the best man and his wife wrote to us. More baggage that I just can't throw away, either physically or emotionally. I do have lots of good memories as well. Pictures I took as we entered the Lost Days. Glad I got to do those simpler  things with her. 

Now everyday is groundhog day. Where have you been? How come you came, I haven't seen you in a Long while, then I rush off to the house pack another load for storage, in doing that I create 2 more piles one for the dumpster one for goodwill. I get done loading the storage 25 miles away, go home do the dumpster run,back home then to good will then if there's anytime left mow the lawn fold the clothes cook supper. I cooked probably my last meal last night and put it in containers for this coming week. Pots and pans are next to the storage.

My only socializing is at Bk or Walmart, but mostly at mc or church. Still looking to find a companion to start over with. I need to print off the mme so I can test any potentials.

Starting over is not gonna be easy as dementia has kinda made me damaged goods. But that's another post. Thanks Bill.

Your doing a very admirable job.

JC5

Once again your truth and insight is astounding! Thank you for  putting into words what so many of us feel.  Your courage and honesty resonates with us all .

michiganpat

Thank you, Toolbelt. I couldn’t get anywhere with my computer, trying to send the thread to my email so I could send it to my sister in-law as my brother has dementia. I went to my I phone and it was a piece of cake. Options were at bottom of the screen to send it by email, text, etc. I hope this helps someone else.

DJnAZ

Much like your piece, The Calvary is Not Coming, you have again captured the pain, sorrow and loss of caregivers dealing with a loved one's dementia.Thanks for saying what so many of us feel every day.

ghphotog

You put into words something we all see, hear and feel but can't express it as well.
I would love to have my family and friends read your posts just to gain some insight into what I / we are experiencing everyday but if I say, "here read this!" I know they will never read it but I might try anyway.
Thanks Bill!

lminamyer

I can relate. My husband is 61, 3 years younger than I. I am swirling in so many emotions: fear, sadness, guilt, relief, hope, despair, self-pity, grief. I just came to the realization that this is not something that is ending soon. My husband is in memory care at this point. He is very aware and does not want to be there but I need to sleep all night and not be a 24/7 caregiver. I would like to think there will be some kind of normal life after this but how old will I be? At this point I go see him or pick him up every day. He is always waiting for me and sad and confused when I drop him off in the evening. This is my first time  in my life to be living alone. I am trying to maintain friendships. But don’t always have time or energy after house, dog, husband and the details of life. I want to be loved and love again someday. But I will be married until my husband dies. He is very physically healthy so who knows. He is still is company but more work and no help. I love him so it constantly hurts. He was diagnosed with E O A D in 2019 but looking back has had it at least 5 years now. Went to try out for a clinical trial last year and he was rejected, the doctor said he was moderate to severe at that point. Sometimes I feel like my husband in trapped inside of that sticky substance of Alzheimer’s. Well thank god for LTC insurance purchased when he was 40!

Soul Mate

Bill,

 

 

Thank you for your wisdom. What I learned from you:

 

               the cavalry is not coming; (everything is on us caregivers). 

               when life gives you a lemon, make some lemonade

 

Even as caregivers, we all walk our own walk.  I couldn’t find caregivers or daycares that could handle both my husband’s type 1 diabetes and the dementia. He also had a high need to be active and on the go. So I spent my money on a cleaning lady, eating out, gas and creating adventures by exploring the world around us.   In good weather we’d head for a park or a downtown; in bad weather, a shopping center or the like.  I don’t think there is any part of our surrounding area that we didn’t explore, including all the family restrooms.  

 

During inclement weather, we turned to television, mostly You Tube which we could stream onto our big screen tv.  My husband couldn’t follow a plot so we’d engage in various activities virtually – skiing, sailing, biking, white water rafting, nature walks, travelogues, and much, much more.

 

And then there’s the third part of the equation – the extra “spice” of the formula – music in all its forms- at home or on the road.  A real lifesaver and mood enhancer.

 

Over time my husband’s energy dropped bit-by-bit and he got slower and slower. And then he died suddenly of unknown causes, thankfully without ever being chair or bed-bound.

 

That’s when old friends showed up – to attend the funeral.   We had been “odd couple out” for years because of the dementia.  After the funeral, I again found myself “odd person out” with these same people because I was now “single”.  

 

So once again I’m applying the formula:

 

               the cavalry is not coming; 

               when life gives you lemons, make lemonade;

               let music lift you up.

 

Thankfully I discovered that widows, as a group, are very nurturing, accepting and reach out to include.  A real lifesaver. Very similar to love and friendship of this dementia group.  

 

PS. Bill, thank you for reposting your previous post.  I searched for it several times using different key words but was unable to find it.  Now I have it printed out for future reference. I hope you’ll repost when the system changes so that it will be there for those that join this path.

Jo C.

Bill, thank you so very much for your experiential wisdom. I am one who has copied and saved your Cavalry writing as well as this Post.

I would like to suggest that your Cavalry writing is an important piece and is worthy of publication. In fact, you are a marvelous writer and if this is not your current profession, I so hope you continue to develop your talent.

Not that it is any of my business, but you mention working fulltime on top of caregiving; may I ask what profession you are in or type of work you do?   It was not mentioned in your Profile.

Have to say if anyone keeps looking for your cavalry writing, it would be best to copy it befoe the transitioning to the new Platform starting on April 3; all the prior Threads/Posts will no longer be available.

Once again, thank you,

J.

Jgirl57

I agree with Jo; your writing style is good and I hope therapeutic 

for you. I am appreciative of your posts

Bill_2001

Thank you all for your kind words.

In response to several inquiries I have received, here are some answers.

My post entitled The Cavalry Is Not Coming is in my own data files, and I will re-post it on the new platform when it goes live. I compose my longer articles offline and save them to my file system for editing and weeding out parts that may not be helpful. It also keeps my posts from turning into rants (hopefully), as some of my earlier posts did.

I am not a writer; I work in the Information Technology field. I am somewhere between 2 and 10 years from retirement, depending upon my dear wife’s dementia progression. Her need for additional care and my own ability to continue burning the candle at both ends may very well dictate whether I leave the workforce sooner (or later). Upon reflection, my decades in the tech field have helped me think logically and methodically, which may have helped me cope with care giving as long as I have.

Again, thank you, my friends, for your kind words, and for all of your helpful other posts on this forum.

RickM

Wow Bill, thanks for your thoughts. They so accurately describe life in dementia land. I admire how well you seem to be keeping it together and wish you well continuing on a safe journey. I wish that you find peace and joy, if not now, then at the end of your journey.