Its Our Turn. Preparing to say farewell...

M5M

butterfly, I pray you can savor these last moments as your husband finally has peace. You have been his champion for so long, I wish release and rest for you both.

northernlady

Holding you in the light.

You've been a hero for your husband.

Respectfully,

M

ghphotog

I'm very sorry.

CindyBum

Sending you peace and light on this Easter morning.

Jeanne C.

Wishing you peace, comfort, and strength.

ladyzetta

Dear Butterfly,

You're in my thoughts and prayers. Hugs Zetta

Army_Vet60

Butterfly Wings,

Staying with a LO through 7 stages of this disease takes more strength than most Caregivers knew they had.

It comes with a price. Our own health…

The end of Stage 7 is the beginning of Stage 8. The grieving doesn't end, but you will be free to get the help you need for yourself to recover from the disease.

Never forget the love that brought you two together, and never feel guity that you couldn't save him.

Alzheimer's never loses a chess match…

Lills

Thinking of you and wishing you peace. Lills

ButterflyWings

Dear Forum Friends,

Thank you so much for the kind words and thoughts. They mean so much. We are still here. Seeming to rally again, but we still know where this is headed. I posted in the Caregivers forum as well, so this may be a repeat.

Main update for now, is this seems like it will truly be "the long goodbye" for us. Slow motion. And except for several frightening hours the day before yesterday, you would never even imagine that one week ago he was expected not to last another 48 hours. This is the craziest disease ever.

*Adding: DH's wide-ranging status of the last several days has made it hard to gather my thoughts to even update you all.

• One minute he is unresponsive and the next he actually is talking a blue streak (more words than I've heard from him in the last year including some sentences that make complete sense).
• And he goes from a limp, 2-person assist to actually standing up and walking 5-6 feet to his rollator (which terrified me since he is such a fall risk). Our aide has been companion care. She is useless now.
• Five days ago, he could barely breathe and could not hold his head up — we had 2 firefighter assists in 12 hours, ultimately getting him settled into the new hospital bed.
• Oxygen ranged from 85-98 (the latter after 24 hrs on the oxygen machine we have thanks to hospice)
• He ate almost nothing for 2-3 days and would take little hydration. But I kept offering sips water & juice
• Then today, DH sat at the table for an hour and fed himself the pureed breakfast and again at lunch. I don't know what to think. This may be months. Or weeks. Or days. Or hours.

I'm happy for any extra time with my beloved as long as he is comfortable and not in pain. But this is so unpredictable as to keep me on the edge of my seat. I will keep you posted. Wishing everyone well, despite this disease.

ImMaggieMae

Thank you for keeping us updated. I have been thinking about you and your husband every day. You say that your aid is companion care and not really helpful at this point. Is she from hospice? Is there any chance of hiring someone to help you get him in and out of bed? Even with a hospital bed it has to be difficult for you to move him. We use one of those slippery slide sheets to help, but moving a man who is 6 ft and around 170 lbs isn’t easy, even when he is able to walk unsteadily.

It brought tears to my eyes to hear you say that for a time your dear husband was talking in complete sentences that make sense and sitting at the table and eating. Such a gift along with all you’ve been through. You are such a compassionate caregiver and certainly a role model for me. Your husband is so lucky to have you.

Jeff86

BW you are such a courageous and dedicated caregiver. I’m glad you have been given the gift of a little more time and wish you and your DH peace in the time left to him. We are with you on your journey.

JeriLynn66

Continuing to hold you up in prayer.

harshedbuzz

Thank you for taking the time to update. You and your DH have been on my mind.

HB

LJCHR

Thank you for the update. Have been thinking about you and husband and how things are going. Grateful for you that you are getting the extra time but praying for your strength. This disease is such a roller coaster ride. Prayers continuing to come your way.

Babz0226

Thinking of you and your DH and hoping you remain strong like you have always been a great caregiver. I hope to be like you when the time comes.

Take Care

jfkoc

thinking of you

sally1

I am at a similar place with my DH. God be with you. Hugs and prayers.

housefinch

Sending you hugs and comfort.

ValsMom

My prayers for your DH and peace for you.

toolbeltexpert

Thank you BW for the update. I don't get on often anymore. My dw had that same sudden downturn then a rally, then 2 weeks later gone. Nothing predictable, prayers continue.