The Long Journey to Here

The Long Journey to Here

I first joined this sight back in November because my father was slipping into the severe stage and I really didn't know what to expect. I also noticed in my support group that no one there could really tell me what was to come. Well, we've been in this stage for 5 months now and I thought I'd share our experiences:

We used to have good days with a bad day here and there. A bad day back then was one with incontinence, significant challenges with mobility where I had to support Dad even when he was using his walker just to get to the bathroom a few feet from his bed, and perhaps limited communications. Then we would have a couple of bad days per week; then the bad days began to string themselves together where we'd have 2 bad days in a row, then 3, until the bad days became the norm and we'd have a good day here and there. Now, we feel fortunate when we have a good hour or two.

His speech has declined to the point where he is unintelligible most of the time. I can see that it can be frustrating for him, because he wants to communicate something, but we just can't figure out what it is. Sometimes he's trying to communicate something based on a hallucination or delusion, sometimes it's grounded in reality. Sometimes his speech was clear and strong for a short period of time, but then it almost always devolved into a garbled whisper. For the most part, now his speech is reduced to one or two word phrases, but generally what he is trying to say is unintelligble. There have been a couple of occasions where he was strong, got out of bed, sat up and chatted in a strong coherent voice. We listened to jazz that brought back our favorite memories, talked and laughed with his sense of humor fully apparent. After about an hour, two at the most, I could actually see the cognitive decline occur. So, I'd put him back in bed and then he'd sleep for two days. On other days, I play his favorite jazz tunes and recently I'd swear I was able to detect the slightest of head-bobs to the music. It warmed my heart...thinking...he's still in there somewhere.

Our doctor explained that we could expect a decline, then he could rebound (although he would not rebound back to the level he had before the decline; a typical 2 steps down and one step back up. So, it was not going to be the "fall off the cliff" decline that I feared. Instead, because it was a gradual decline with a bit of rebound, I found myself on a rollercoaster of false hope, thinking for some reason he was actually getting better. Eventually, I was able to get off the roller coaster and accept the truth of what this disease was doing to my beloved Daddy. When people would ask how he was doing, I stopped describing it as "he's having a really good morning" with some degree of optimism and instead simply replied "he's doing as expected."

Now, his waking periods find him primarily staring at the ceiling when he's not hallucinating and he may or may not yell out my name, my mother's name, or my brother's name (this is usually in a strong distinct voice.) He seldom gets out of bed, cannot toilet without significant assistance. He needs help putting his dentures in, but then I usually find them in his bed. Now, I have a hard time getting them in because he cannot move his tongue out of the way. He eats puree (thank you Blossomfoods.com for palatable puree meals much better than I can make) which he can eat without his dentures. Recently, he is now periodically refusing to eat. Some days he'll eat eggs and applesauce for breakfast and a pureed meal for dinner. Some days he'll only eat a bite or two. At some meals when he won't eat, he will take an Ensure. There is the occasional day where he will refuse to eat anything at any meal time, no snacks during the day...nothing...maybe a few sips of water. Today for example, he's only had an Ensure and a few spoons of applesauce before he started shaking his head "no."

My youngest child is now pregnant with her first baby. I've told Daddy about the coming baby over and over and I think he actually remembers. I had planned to travel to Virginia to visit her for a few days, so a week before, I started telling him that I was going to visit her...I reminded him everyday in an effort to reduce his anxiety and agitation at my absence. Of course on the day I was to leave when I told him I was off, he immediately became upset wondering why I had to go "so suddenly". After gentle reminders, he settled down...but by that evening my husband reported that Daddy was agitated, refused to eat or take his medication, and stayed awake all night long! Never fails... But by day 2 he was fine and everything was uneventful until my return.

So, my point today, is just to share this point in our journey. Others may have a different story...this one is ours. It has been a tough road journeying through Alzheimer's Disease and I would not wish this on my worst enemy....watching my dad go from the vibrant, articulate, creative jack-of-all-trades to this person who is but a shell of the man I've loved all my life.

Daddy has been in each of the first 6 stages for about 6 months, and now I think I see him slipping into end-stage. Despite all that he's been through and as much as it will bring him blessed relief...I'm not ready... A week or so ago, through the fog of hallucination, delusion, and incomprehensibility, but in the strongest, clearest, and most articulate voice and vocabulary I've heard in months...I listened while my father thought he was in church. He addressed the entire congregation and clearly made his peace with them and with God. I have no idea how he was able to put these thoughts together through the fog of AD and articulate them so clearly...maybe that's the mystery of God. So while I may not be ready, maybe Daddy is.

God bless all of you who are walking through this horrible journey.

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  • Thank you for taking the time to update us all. Keeping you, your Dad and all concerned in prayer

  • Stephanie,

    My heart goes out to you and your family. You are going through one of the most difficult challenges you will ever face and it is a long lonely walk. I was with each of my parents through their journeys with DLB until the end. I never want to face something like that again.

    And I totally agree. Dementia is a horrible, unrelenting, unforgiving animal that I would never wish upon anyone, patient or caregiver.

    I hope you and your family find some comfort during this remaining time and only remember the good after. Don't let the "what if's" overwhelm you.

    Take care,

    Randy

  • I just joined this forum recently. My Dad was diagnosed with DLB a few weeks ago. He was terrible when we brought him to the hospital. After weeks there and then another 2 weeks in rehab he started coming back to his normal funny self. He was hallucinating, staring at the ceiling and just wandering around looking for my Mom and not knowing where he was. We have since seen a very highly recommended neurologist who finally diagnosed his with DLB. He is doing so well right now that I think we are all feeling like he might be like this for the rest of his life. I know the reality is that he won't be but how in the world do you prepare for this? My Mom is in denial and won't read anything on it. She is having a really hard time with this and she is his main caretaker. I don't want to force her to read about it and get upset but I also want her to be prepared for what may occur. Any advise? Thanks for letting me have an outlet to vent too!

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