DW is 5 years and 9 months in Memory care

Crushed

DW was MCI in 2010 , EOAD in 2012, Memory care in 2017 and no idea who I am since 2018

I torture myself with memories of the good times

But as Bob Marley said :

You never know how strong you are until being strong is your only choice.

for those of you early on this road. take deep breaths and tell yourself you will survive

ghphotog

Well needed

Ed1937

That is a very long time in MC. And that's good advice.

Quilting brings calm

Crushed- I started to type that I didn’t know how you have done it this long…but then I remembered that you are doing it just like the rest of us: getting up every day and dealing with the here and now. Because it is what it is. I’m sure you never dreamed that your dear wife would be in both MC and in her current condition this long.

I don’t know what your thoughts are at this point or if you even allow yourself to wonder how much longer your wife ( and you and your family) can endure.

ButterflyWings

(((Crushed)))

Drapper

It breaks my heart …

Beachfan

Crushed,

I’m sorry. I thought our spouses were following a parallel pattern for awhile. DH was MCI in 2010 as well and then began a long, slow goodbye. DH entered MC in 2021 and passed after only 17 months. I thought he would linger forever; he was incredibly physically healthy although he knew no one for several years. The end, when it came, was surprising, sudden, and shocking. I don’t know whether that’s good or bad. I’m sorry, I’m just sorry. Stay strong; your journey is incredibly sad.

John1965

Crushed,

You were the first to respond to my first post on this forum eight years ago; writing something like “I have no shoes but you have no feet!” Those were honest words of acknowledgment since my kids were 13 and 19 at the time.

DW was diagnosed MCI 1/2015; EOAD 4/2015 at barely 50 years old. She’s now been in memory care for 10 months. Memory care comes with its own set of challenges and adjustment of expectations!

Between June 2016 and September 2022 I was her sole caregiver, having given up my career and freedom to care for her. While I have more “freedom” than before, I’m still stuck in second gear. I visit DW almost every day and can’t allow myself to leave town for more than three nights. I’m still in my 50s, distanced from my career, and struggling to find my place as (in my 21yo daughter’s words) a “married bachelor.” I have great friends and great family, and I’m so fortunate compared to so many others. But it’s still hard. It often fees like my supporters don’t understand that I can’t be footloose and fancy free.

You and I (and all of us on this forum) have been robbed of so much. It’s been months since I’ve contributed to this forum. The past eight years have exhausted me, and now I’m working to find my path forward.

Saturday is our 34th wedding anniversary. I’ll take in cake and some photo albums and feign happiness for a couple of hours. …

You are not alone, compatriot. I thank you for the support and insight that you’ve shared over the years.

Donr

Crushed, you are an extraordinarily strong caregiver and have helped many people on this forum. Sometimes it is tough to sit back and think about the good times, at least for me.

Jeff86

You have my sympathy and my admiration, Crushed. You’ve been a relentlessly committed caregiver over an astonishingly long period of time. It’s been a mere 6 1/2 years since DW’s diagnosis, and at times the pain, the memories of who DW was versus what she is now, grows worse with time, not better. I’m sorry beyond words.

toolbeltexpert

Crushed you've been such a great caregiver as have all who have responded. The long haul nature of dementia is brutal on the pwd and the caregiver.

I am glad you've continued on with what life still affords and remain strong.

Stewart

White Crane

Crushed, Bob Marley’s quote resonates with me. My heart breaks for you and for all of us on this forum. Even though my husband wasn’t formally diagnosed until 2016 or 17 I’ve been watching him decline since 2012. It’s a long and weary road. I don’t torture myself by remembering the good times. At this point, I don’t really remember them. Someday I will. Stay strong.

Brenda

Sometimes overwhelmed

Crushed,

Thank you for your empathy and understanding. I'm currently sitting in the garage, waiting for my DH to calm down and for me to feel it's safe to return to the house. He was ok this am, until he wasn't.

He was diagnosed in 2019 with dementia, specifics to be determined. He eventually was diagnosed with Vas. Dementia/ ALZ. He is in later stage 6. Still at home. I'm his primary caregiver, with a hired caregiver coming in a few hours, twice a week, to give me a sanity break.

He's having increasing episodes of stubbornness, occasionally with acting out, despite increase in medication. The medication seems to keep him on track 90-95% of the time. It's the rest of the time that's a "challenge".

As I ride the emotional roller coaster and perform all the physically and emotionally draining caregiving tasks, it's some comfort to know that I'm not alone in this journey, and that others really understand what's involved.

May we all stay strong as long as we need to.

Sometimes overwhelmed.

A. Marie

Crushed, my DH (who in hindsight was developing Alzheimer's for over a decade, though he didn't get a provisional diagnosis till 2018) got a "get out of jail free" card when his condition suddenly worsened in the last week of May, and he died on June 4. It's a bitter truth to have to admit that death was the only possible liberation for him, but so it was. Love and understanding to you and to all the other commenters who are still on this hardest of all hard roads.

Vitruvius

My DW is now wheelchair bound, hand fed with trouble swallowing, and is on hospice. Yet it has been a much shorter journey for me at about five years where DW's dementia has been really noticeable. So I can't really appreciate how hard it must be to have been on this road as long as you have. You have my sympathy and admiration.

Elshack

It has been a long and difficult road for you. We all are members of this club for sure. My DH has been in memory care for a year and I am praying our funds will hold out.

Joe C.

Crushed, Sorry you have reached this milestone in our shared journey. DW has been in MC for 20 months now and is healthy & happy. I wonder if one day I will be posting a similar milestone.

JoseyWales

Crushed, I think of you and your DW whenever people say that early onset goes faster. Everyone takes their own journey through this horrible disease. For some of us, that journey seems never ending.

I have been on this site a long time, and I remember when your wife was still at home. I remember how well you took care of her, and of course still do. Thank you for this update, and for staying here to let us know how you are doing.

DJnAZ

"You never know how strong you are until being strong is your only choice."

Thanks! I needed to see that today.

jfkoc

I am with White Crane on the memories. Remembering does not always bring happiness. They often bring tears. I wish people would realize that saying "but you have wonderful memories" is not helpful.

Crushed

Thank you for all the thoughts. my latest article was published in Germany so I am keepoing professionally alive. All the renovations I did for DW now help me as I age in place. We can handle the cost of her care . I know many who can't. My daughters and grandchildren are wonderful and local.

I also have constant reminders of hilarious "marital moments".

White Crane

Congratulations on your latest publication, Crushed. I’m glad you’re keeping professionally active.

you are blessed that your daughters and grandchildren are so close. Even in the midst of sadness, there are still blessings. I wish you peace.

Brenda