Quick Journey for us - 18 months with FTD

Northeaster

Hi everyone,

I just wanted to check back in with this group and let you know that my husband passed three weeks ago. It's been a quick journey (comparatively) for us, with only 18 months from onset to passing. Over the past 6 months, he quickly became mute, and the difficulty swallowing became increasingly problematic. Although the neurologist offered to order an EMG to confirm possible accompanying ALS, the muscle twitching/wasting and difficulty swallowing made me feel the test wasn't necessary, especially since he was declining so quickly and he'd been through enough.

Keeping him home became increasingly difficult because he was still incredibly mobile (walking 6 times each day, equating to over 2 1/2 hours a day) with poor judgment. He'd leave the house and despite putting locks on the doors, he'd get out. I was so worried for his safety at home that I ultimately admitted him to a memory care unit 5 weeks before he passed. (He even escaped the memory unit several times!) Once in the memory care unit, I could see how much I had been doing to underpin him at home and how much ability he had lost. He declined quickly and it was ultimately the difficulty swallowing that caused his death.

Thankfully, due to the dementia, he never seem to have dread nor was frighted/frustrated. Oddly, 5 days before he passed, his dementia seemed to clear for several hours. He was very aware that day (even though he couldn't talk), we had a pleasant day walking around the grounds of the unit, and he enjoyed time with his son who had flown in to see him due to the rapid decline. While this day was special, it also was difficult because he seemed very aware of everything that day, especially that he was dying. At one moment, he cried, kept hugging me, held my hand tightly, and peered (longingly) into my eyes....... None of which he had done before, nor did he do again. I'll never forget that unusual, uncharacteristic, and "very present" day. While I feel that I had him back for a moment and I was thankful to "connect" with him, it was painful to witness the grieving he seemed to be doing that day.

The next day he continued to eat/drink minimally and no longer could get out of bed. I'm so thankful for hospice and that he went quickly. The past three weeks have been a blur with all of the necessary duties and answering the painful question of "how are you doing?". I always seem to be fine until I hear that question.

Special thanks to everyone in the group. While I have been a member in the shadows most of the time, it's been a life-line, confirming I'm not alone in this journey.

My best to each of you and your loved ones.

Pat6177

Northeaster, my deepest condolences to you. Be gentle with yourself as you transition to Stage 8. Thank you for letting us know.

Joe C.

My sincere condolences on the loss of your husband. May you find some peace in the days ahead.

Denise1847

I am so sorry for your loss. May you be blessed with peace and fond memories and all of the bad memories fade away.

Davegrant

I want to add my condolence to you as well. I too can only say give yourself some time to heal from this shock to your life. My journey has been more like drops of rain in a bucket over the last seven years. Warm thoughts to you.

harshedbuzz

I am sorry for the loss of your dear husband.

M1

Condolences too. There is perhaps some mercy that he didn't linger. How striking that you had that day of terminal clarity.

Joydean

I want to add my condolences to you and your family. What a blessing to have had him for even a short period of time. Take your time and be kind to yourself. You did everything you could for your husband and now his suffering is over. God bless you and your family.

toolbeltexpert

Northeastern I am sorry for your loss . The moments of clarity you got in the last days are so precious.

Stewart

MN Chickadee

I can only imagine how bittersweet that day of him being present must have been. A blessing but also haunting. My sympathy for your loss and everything you have been through the last couple years. Wishing you peace in the coming days.

Ed1937

So sorry for your loss. Wishing you comfort and peace in the coming days.

CindyBum

Sincere condolences. I hope you are able to take the time to grieve and find a way to rebalance.

Jgirl57

Thank you for sharing your story .Hugs and peace to you and your family .

Dio

So sorry for your loss (but I'm a bit full of envy...am I allowed to say this outloud?). May you take care of yourself, and that days ahead will be bright.

ImMaggieMae

My deepest sympathy for your loss. I hope you find peace in the coming days.

CStrope

3 Years ago this month my DH was diagnosed with Alzheimer's. A year later, that diagnosis was changed to FTD. As we've progressed over these past years his symptoms and actions definitely fit more the FTD model than ALZ, but it could be a combination. There are still so many things he can do himself, but the aphasia and memory issues are overwhelming.

Bottom line is, whether its 18 months or multiple years, helping our loved ones and watching them go through this is the most horrible thing. Sending you good thoughts as you pick up the pieces.

Jeff86

Heartfelt condolences to you, Northeaster, on your DH’s passing. I am sure that day of clarity will stay with you forever—alon with mixed emotions about it. Wishing you peace and healing in the weeks and months ahead.

Howaboutnow

My sympathies are with you. Thank you for sharing your journey with us. I feel like every time someone shares their story it makes those of us still in the trenches stronger. ❤️

Beachfan

Northeaster,

I am sorry for your loss. Long journey, or short, Dementia is a horrible traveling companion. May you find peace and comfort in Stage 8. Blessings.