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.

sally1

Stay strong in the Lord. Don't let anyone tell you what to do. Savor every moment with your loved one.

DWTired

Prayers for you! It is a hard time in this journey…Hugs to you!’

ButterflyWings

Hello friends - Funny to see this post. DH did rally, and we are still here. He really came all the way back to his baseline and then some. Surprised everyone by being stronger and more verbal and clear for months. I started working outside out home more and he even came with me several times. Being overloaded with work and late-stages caregiving I have not been able to post or connect here for a while.

It has been an exhausting few months but also a joy because we have had quality time where he is clearly stage 7 but definitely understanding me and despite sleeping a lot — when awake he is more alert and even engaging with me and others. The caregiving help was mainly just giving his pureed foods and companion care. I could use more help with the light housekeeping aspect of our care plan but have not found anyone that can do both (show up reliably and be good with DH when needed, but help with house stuff when I am here to do all his physical care). So they sit =)

I'm checking in here because of a new development. Just recently there were signs of a UTI starting and I agreed to Levaquin (sp?) for his comfort instead of the usual Cephalexin that I know he can tolerate. Oh man — tremors, fainting multiple times a day and appetite is way down — he can't even stand up long enough for me to change his briefs now.

That is the only good thing about his slow but steady weight loss in the last year: I can hold him up easily when he goes limp, long enough to ease him back onto the couch or chair. I realized after several days it must be the medication and stopped it but I'm sad I didn't figure that out beforehand, or just request the antibiotic he is used to. Had hospice deliver a wheelchair as I don't know if he will be walking again. Sad times. So sudden although expected eventually.

So, DH is suddenly essentially bedridden now and I am housebound full time again. Feeling like this downturn may be the beginning of the end (again) and this time for real. But I've also learned enough in the last 6 years to know that only time will tell. Progression from here may be fast or slow — who knows. He is so thin now. I love him. Glad to be able to provide an fairly soft landing as dementia is doing what it does. Thinking of you all, all the time. Take care.

Quilting brings calm

BW thank you for the update. It’s really a rollercoaster, isn’t it. I pray for peace for you.

Joe C.

BW, Thank you for the update. This is certainly a long and winding road. I will keep you and you husband in my prayers.

fmb

@ButterflyWings

Thank you for the update. You have been in my thoughts a lot lately, as our husbands were at about the same stage and seemingly progressing together. My DH also recently experienced a period of increased lucidity and energy. It was such a blessing and joy! While I pray that your DH rebounds again, I also pray that if this is the beginning of the final end that it be peaceful and merciful. Take care of yourself, and if you find yourself with a spare minute or two, please stop in and give us a brief update. We're still here for you. ((hug))

Babz0226

I think of you and your DH often. I'm still trying to follow all your suggestions about keeping him home. Time will tell.

Take care, we all miss you.

ThisLife

https://alzconnected.org/discussion/comment/229878#Comment_229878

It's good to hear from you. I'm happy for you that you have had this time with DH when he is more "present."

Dio

So good to hear from you, and very glad to hear your update. To survive this roller coaster, it's good that we are presented with some lucid and happy moments.

DWTired

Prayers for you…HUGS…….💕