Will you still need me, will you still feed me?

Jeff86

Paul McCartney was a mere 16 years old when he wrote those lyrics, as he imagined what it would be like to be older.

Last week, I reached the milestone in the song, age 64.  I was 59 when DW was diagnosed, though there’d been clear signs of cognitive issues for at least a couple of years.  

We all know that each PWD’s journey is unique.  I think each caregiver’s journey is unique, too, even as this community is wonderful at helping us find commonalities.

The Beatles song keeps playing in my head, as I contemplate where I am in the caregiver journey...and my life in general, and what the future looks like.  Right now, I see a lot of endings.  

I have had many blessings in life, among them a loving family (the one I created...) and especially a wonderful wife, a rewarding career which has been intellectually stimulating and has given me the opportunity to help people, and robust health.  I am grateful beyond words.

There's still this loving family but with DW in late stage 6....well, you all know.  Or will.  Some time ago, I turned the corner from husband to caregiver.  Marriage as I knew it is over.  I am still working and still enjoying it but the arc of my career is clearly not rising at this stage, and more likely than not I'll retire in a couple of years, if not sooner.  And while my health is still pretty good, I've had two surgeries post-age 60, and despite three months of physical therapy I have not recovered from the last one nearly to the extent I'd hoped.

So what lies in the future?  A lot of question marks.  There’ll be time to look for answers, but it feels like I’m arriving at a crossroads with no signposts.  Go right, go left, go straight?

Sometimes AD feels like being in limbo, not going anywhere.  Meanwhile, there’s that song playing, but the possibilities mentioned—renting a cottage, receiving a valentine—aren’t happening.  Doubtless, McCartney never contemplated AD.  But how differently I, with a caregiver’s ears, hear these lines: 

I could be handy mending a fuse

When your lights have gone.

CStrope

Wonderful reflections.  I think we all end up wondering when.........on so many things.  You're right, every one of us will have a different journey, but yet so many parts of it will be the same.  Hang in there, it's the best we can do

M1

Thoughtful and timely Jeff. I was thinking today that it speaks to the kind of year it's been when the happy highlight is getting Medicare benefits ( I've got a year on you). And I agree entirely with the limbo feeling, wondering what's ahead, but unable to move in any direction. Just marking time.

Hang in there....

Joe C.

OHHH, Do I wish I could mend that fuse!

Battlebuddy

   Thank you Jeff for your thoughts . 

  It is exactly what I’ve been feeling. Limbo. Do we try and get out of the limbo or just except that it is where we are at for now? Do we make future plans?  Do I create a post caregiving bucket list? How much of the present do we keep ( our marriages and things we do together) going , or do we start living the life that is coming? 

  I for one have accepted the stage we are in but also feel restless and want to start working on that bucket list at least.... 

Crushed

Just get ready for the small minded judgmental people who cannot understand what this disease does to the spouse. In some ways they are worse than the disease because they have a choice.  And too many chose to tell you how to live or life or what is gods will etc. 

Ignore them.  They know nothing.  Do whatever keeps you alive and functioning

Ed1937

Jeff, thanks for putting that in writing. I think most of us are living in Limbo now. And it's not fun.

Stuck in the middle

Happy Birthday, Jeff.

All this talk about Limbo reminds me of the Limbo contest I won at a garden party one hot night in '71.  Won't be doing that again, or a lot of other things.  Career over, marriage over, yada yada.  But I'm not dead yet, and I still enjoy a good meal, a good book, conversation with the few friends I haven't offended or outlived, and the sun in my face.  

Sir Paul was a great poet.  So was Willie Nelson.  In his words, "Here I sit with a drink and a memory, but I'm not cold, and I'm not wet, and I'm not hungry.  Classify these as good times."

Have some good times, Jeff.  

CStrope

Thank you Jeff for starting such a wonderful thread. Every response has been filled with support and understanding, just what we all need. That is what most of us come to these message boards for and it was wonderful to read and connect with others feeling the same things as myself as we navigate this journey.

Thank you thank you.....

amicrazytoo

Thanks Jeff, now I have an ear worm... But it's one I truly appreciate. I too turned 64 this year, DH is 12 years my senior. We have shared so many wonderful times together, alas, I am the only one who remembers. Almost daily he asks me "Are you ready to go boating?" I always answer "Yes sir!" Our Boat has been sitting in our driveway for 10 plus years now. It will never see the Bay again with us on board. I count myself lucky we still share the fondness of boating. I am grateful, he is still continent, I can still work full time, he is able to make his own lunch, as many times as he wants... I am grateful that I have supportive friends and family, I have this forum for advice and and an outlet for frustrations.  Although we all have our struggles, I know in my heart that it could and may become worse. But, I am grateful for where I am at this very moment.

Pooh Bear

Jeff,

Thank you for your post.  I can totally relate to "Will ya still need me, will ya still feed me?"..

My sister and I were Died-In-The-Wool Beatlemaniacs in the early '60s.  Who knew that Paul's words would become so ironic in my "golden" years?

Thanks to your post, I have dusted off all my old Beatles' CDs and I've had a Beatlemaniac morning ... how refreshing !!

Thank you, and God Bless us all.

Crushed

I have a small collection of Pick me up songs on my phone I play coming home from visits

Enjoy

I will survive

https://www.youtube.com/watch?v=gYkACVDFmeg

You and me against the world

https://www.youtube.com/watch?v=gJAKmWAIKcY

  Did She mention my name ? 

https://www.youtube.com/watch?v=r2ni9hRaU5A

Five o'clock somewhere

https://www.youtube.com/watch?v=BPCjC543llU

Cotton Jenny

  https://www.youtube.com/watch?v=-q-7pLOEcBs

Save the last dance for me

  https://www.youtube.com/watch?v=n-XQ26KePUQ

 

Lorita

I also loved the Beatles and their music.  If I was down listening to their music made me feel better - still does.  I don't know any of the groups who sing now - can't even understand the words of songs. 

Bhopper

  Jeff and all that added to the thread could not been a more perfect time for myself anyhow my 58th birthday was two days ago my wife is today 62nd Fortunately today is a pretty good day I took the day off and stayed in bed with her until nine I feel blessed that we have this time now and know that the outcome is it best unsure thank you for all of the thoughts by everyone that has posted they all apply in someway to us in our life that was changed forever from what we expected six years ago but we are still hanging in there mostly because of the support I see through these boards and the honesty of all that participate thank you all very much!!

BH

Lynne D

Hi Jeff! Our ages and stages are exactly the same! I went without income for a while and started drawing retirement just this month. We moved to a neglected little house in a rural area that we own outright. We’re not rich but have no money worries. I find that simplifying my life by removing career ambitions and removing worry about management of my Husband’s care was a burden I was happy to have lifted, in retrospect. It is significant to abandon a big chunk of yourself. I went from being a healthcare compliance specialist in Las Vegas to a caregiver in a town of less than 500 in Idaho.

For me, I have new personal challenges (being a caregiver and otherwise). I have become proficient at using many power tools (even a chainsaw!) am putting in a drip system, planting trees, learning to put up preserves, etc. I find I don’t miss work, but if I feel the need for an intellectual challenge, I transcribe documents for the Smithsonian while my husband naps.

Everyone had a different journey and priorities. It may surprise you what you can do.