Update on DH's decline

Marie58

Hi everyone. I haven't posted in a while, but often check in to see how everyone is doing. I'm so sorry there are so many new people that have a reason to be here. But you found a great place with caring people, where you can learn, share, grieve, rant, and sometimes even laugh.

My DH has been in MC for 15 months now. He was diagnosed at age 60 with EO dementia 5 1/2 years ago. His decline was quite fast in the beginning, then slower but still declining, seemingly daily. Not a lot of plateaus. In the past few months he's been slowing down physically. Not leaving his room much, needing help standing from his chair, needing some assistance occasionally for balance, etc. He started having a few falls, missed his chair a few times when trying to sit down, even decided to just sit once in the dining room and once in the shower with no chair in sight.

About two weeks ago he was assisted into the bathroom to be changed. I was there and didn't see anything unusual. When he headed back to his chair, he fell and wouldn't put any weight on his left leg. No visible injuries. The next morning he wouldn't stand at all. 

Fortunately we got Hospice on board about a month prior to this incident. So long story short, he's had fever on and off, sweating on and off, breathing hard/shallow on and off, and his tremors have increased. He can't stand/walk and can't feed himself either. We don't think he's in physical pain as there's no visible injuries and morphine and Ativan haven't changed anything much. He has a hospital bed now and a hoyer lift, but that really scared him, so he's pretty much bedbound for now. Hospice mentioned 'terminal agitation' so now Seroquel has been prescribed to see if that calms him down. It's very upsetting to see him fearful, shaking, restless, etc. If we weren't at the beginning of the end a couple weeks ago, we certainly took a giant leap in that direction.

I'm so in love with DH and this just breaks my heart, which you all understand. Has anyone else seen a similar decline with their LO? He could literally walk one minute and not the next.

Blessings everyone!

Stuck in the middle

It happened to a friend.  I used to visit with him on Saturday mornings while his wife went out for a couple of hours, but suddenly one morning he couldn't use his right leg or right arm.  I think the disease invaded the motor function part of the left side of his brain; it was as if he had a stroke.  That was when he had to go to a NH instead of living at home.

I am so sorry.

M1

Thanks for the update Marie. Hang in there. So sorry.

LadyTexan

Good morning Marie. I am so sorry that this is happening to you.

I think I have read about a swift decline, similar to what you have mentioned, on this forum. It has been a while since I saw the post.

My prayers are with you dear. I ask that God watch over you and your DH. May He comfort you both and bring you peace.

Blessings to you and your loved one.

June45

Been thinking about you Marie.  It is indeed upsetting and stressful seeing your husband fearful and agitated. Let us know how it is going.

Marie58

DH started Seroquel on Wed. He's getting 25 mg once per day, in the morning. He slept hard, barely waking for lunch and dinner. But then it wore off after about 10 hours and he went back to all those symptoms. They gave him Ativan but it took about an hour for him to calm down. Thurs and Fri it seemed to last longer. I hate to have him drugged and sleeping all day, but I hated watching him in that state of agitation and fear even more. 

I know drugs affect everyone differently, but does Seroquel build up in the body and then last longer? How long do they usually wait to change the number of doses per day? Thanks! 

Doityourselfer

Marie,  My EOAD husband is currently on 400mg of Seroquel  (100 mg 4x daily).  In 2016 he was on 25 mg and the dosage gradually increased over the years.  I wouldn't be able to keep him home if it wasn't for this medication.  He doesn't take naps but goes to bed much earlier and gets out of bed later.  

Something new for us is that I literally fed him breakfast in bed twice this week because he didn't want to get out of bed.  I take it as a sign that his AD is becoming progressively worse and someday he will be bed bound.  We have a nurse coming to check him weekly and his vitals, so far, have been good.

anneleigh

Marie,  my husband experienced this.  Fevers on/off are part of the decline.  Crises care was part of hospice plan as DH was deteriorating.  Please prepare yourself this next few weeks or months.  My husband was in bed for over a month, and as I posted in another post just died last night.  I will pray for you as you as well.  Blessings~

Marie58

Anneleigh, thanks for your words of advice and I'm so sorry for your loss. What do you mean by Crises Care?

White Crane

Dear Marie,  I have read on this forum about sudden declines but have not experienced it.  My heart goes out to you and to your DH.  Sending love and prayers.

June45

Marie, just wanted to let you know that I have been thinking about you and your husband.

Marie58

Thanks June45. Not much change. Seroquel is 2x/day now. He's sleeping a lot and getting less interested in food, although he still eats when I feed him and he drinks quite a bit of water. Seems a little weaker, not smiling, and tends to lean to the left.  But he's calm so that's a blessing.

June45

Thanks Marie, I would imagine this is really a hard stage for you but glad he isn't agitated or fearful anymore. Prayers going up for you both.