Late stage dementia & DH Update

JoseyWales

My DH has been in memory care for almost a year and a half. Today it dawned on me that we're entering territory that I don't often hear personal stories about. So I thought I'd share, and update those of you who have followed our story.

DH is now stage 7e. That's the second to last stage = "Can no longer smile." I haven't seen a smile from him in a long time. Stage 7f - the last one - is "Can no longer hold up head." Honestly, he's pretty much there, too. He has a comfy broda wheelchair, but we use one of those u shaped travel pillows to help hold his head up.

He sleeps a lot. He needs to be transferred between wheelchair and bed by a hoyer lift. He does still eat, but it's now softer food so that he doesn't have to chew a lot. He has no trouble swallowing. He is not losing weight, which surprises me.

He has contractures. This was new to me, although I should have expected it because my mother-in-law had the same problems as her Parkinson's and dementia progressed. His body is slowly curling up. His hands are pulling in on themselves. He gets therapy to help, but.... It's progression of the disease. It's painful for him. He will sometimes wince when I gently take his hand. That's the only reaction I see to his environment now.

He makes no movements, except sometimes he tries to raise his left hand. Never his right. He picks it up about 6 inches, then puts it down. He rarely seems to focus on anything with his eyes. He does still make sounds, and on my last few visits I'm made out a few words, but they mean nothing.

He still cries and acts like he's scared or in pain. We're still messing with medication, mostly right now taking him off meds. No more antidepressant - no change when we took that away. No more antipsychotic medication - actually a little improvement when we took that away. No one can figure out if it's anxiety, fear, or pain. Sometimes pain medication helps, sometimes it doesn't. It may just be a habit. It drives me nuts. The only meds he gets now are for pain, anxiety and seizures. There's a plan in place to replace his stronger seizure meds for a different one.

Here's the stupid thing - there's a part of me that thinks and hopes that I will see some sign that he's still in there, knows who I am, and says or does something that makes me see "him". And I live in horror thinking that I might see that sign, and then know that he's stuck in there with no way to express himself. I hope he's not there. I hope that his brain has enough holes that his essence is gone. I don't want him stuck inside a body and brain that don't work, and KNOW it doesn't work. Or sit and wonder where I am. Shortly before he was placed, when life was a crazy kind of hell, I knew his brain didn't work and he wasn't himself. I knew he didn't know what was going on. But as strange as it seems, as he's gone non-verbal and can't move, it's easier to imagine he knows more than he probably does.

He can be like this for years yet. People tell me "It won't last that long," but people also told me early onset goes fast. It's been 8 years since he was diagnosed. 15+ since the first MRI for memory problems. He's only 59 right now. No health issues OTHER THAN the dementia. This can go on for years. YEARS. Hospice has made sure I understand that he can be like this for a long, long time.

He is still in the memory care unit, although he's past the memory care stage. But there's room in the unit and I have a good relationship with the staff there and they've advocated for keeping him. I'm glad.

We don't talk about this stage very often, so I thought I'd share what it looks like. All the stages are horrible. Each has their own terrible details.

Quilting brings calm

Josie - I’m so sorry. That would be my worst fear too. Imagining what goes on in their heads is very scary.

I try to picture living with a spouse in a late stage, and I can’t capture the image. ( My spouse doesn’t have dementia, just a whole lot of physical ailments). My parents are in their 80s, still in the mild stage, and my desire is that they go before they get much further in this disease. Although both of them had one parent that lived into their 90s with dementia.

ButterflyWings

(((Josey))), I am so sorry that you and your DH ended up with this dread disease journey. Thank you for caring and trusting us enough to share this late, late stage experience that most do not have. Your DH having you as a guardian angel is surely the best possible thing, in this horrible situation that could actually affect any PWD. We just never know, though many have a different and earlier ending to the dementia nightmare, we know.

On rough days, we are just barely peeking into 7 here. Seems we've been suspended for a while at a solid 6E most of the time, and my DH's nurse told him last week that he is "just about perfect" (vitals, appetite, overall health, etc.), and "is probably going to live forever". She was saying it to me too, of course. How cruel that we who love them have to pray that that's not the case.

I can imagine your thoughts and feelings. But we do know the dementias are one way. And that with all the progression from where he already was upon placement, he is not lucid and aware, feeling trapped without being able to let you know. I wish you both peace.

Marta

Josey - how is your son doing? Is he almost done with school?

Ed1937

Josie, thank you for sharing. I'm so sorry you both have to go through this. Your post reminds me just how fortunate we were when my wife had a gastrointestinal bleed, and passed very peacefully in stage 6.

While we all know that stage 8 is the conclusion of this disease, not all of us have to experience what you are now. Again, I'm so sorry. I wish it were different.

JoseyWales

I think part of what has been on my mind is what someone in a facebook group I lurk in said. She said when her husband was close to passing, that he recognized her and said her name and seemed very lucid. She was comforted by this. I find it horrible. Because that would mean that people with dementia actually know what's going on, that their brains retain this information. I hope DH has no knowledge of what's going on.

Marta - thanks for asking about my son. Today is actually his 23rd birthday! He didn't go back to school this last school year. He had changed majors once, and wasn't sure he really wanted to continue with his current major. He's still living at home, which I enjoy, and because it's just me here I've told him he can stay as long as he wants. He has plans to move out this fall. He is currently working a full-time job at one of the big employers (in the music industry... bet you can guess which one) in the same town he went to college in. The pay is ok, but it's a stepping stone job. He also works seasonal part time jobs. Last spring it was a pole vault coach for a high school, this summer it's for a church camp. I honestly don't know how he keeps up, but he's young. I'll honestly say I'm disappointed that he didn't finish college. I know Covid slowed him down - online learning wasn't his cup of tea and he had to do that for over a year - or if it's been having to deal with the worst of his dad during college. Or if it's none of those and he's just not sure what he wants to do. He's a hard worker and he'll find his way. He goes with me to visit his dad about twice a month. I'm sure he'd go more often if it wasn't for the long drive to get there.

SDianeL

You're right about not hearing much about state 7. When people ask me about dementia I say "it's terrifying & heartbreaking" My DH was diagnosed 2 years ago and is moderate now. So sad to watch your LO go through this terrible disease. Thanks for sharing. Glad he's being well taken care of.

Joe C.

Josey, Sorry to hear that your husband is in the late Stage 7 but thank you for sharing your journey. My wife is at the beginning of stage 7 and this is painful enough.

M1

Good to hear from you Josey. Though your update breaks my heart for both of you. I'm glad you and your son are good company for each other.

I hope he is gone and at peace, too.

Beachfan

Dear Josey,

I think about you often and your post today breaks my heart. I truly believe that had my DH not had that undetected internal bleed and subsequent vomiting and aspiration pneumonia, he would have lingered in a state much like suspended animation for a very long time. In retrospect, that is a scary thought; although his passing came suddenly, it was peaceful, painless and yes, a blessing. Long ago, I resigned myself to the fact that he did not know me, did not miss me; he reacted to my voice or touch exactly as he did to the voices and touch of various caregivers. It was all the same to him, or so it seemed. And yet 3 days before he passed, I was stroking his face and talking to him and recording on my phone for about 20 seconds. (Morbid, perhaps, but it comforts me now to see him at peace.) At one point, I asked him if he was okay and he attempted to mutter and there is definite eye movement. During those final 3 days, the kids and I held his hands or rubbed his arms or back and talked with each other almost nonstop, including DH in the conversation. I’d like to think he was comforted by our voices and touch, although, save for the one reaction that I recorded he was quiet and non-responsive. Who’s to say?

I am sorry that you and your son have to endure this long, long goodbye. It’s just not fair. I was promised that DH could stay in the MCF until the end as long as he received Hospice services. As it happened, Hospice was in place for a mere 3 days. He is gone only 3 months and I miss him every day, but I am glad for both of us that he did not linger. I have unexpected moments of crushing sadness and yet there is peace overall. I wish each of us on this journey could have a peaceful end, and peace at the end. Stay strong. I pray for you; for all of us.

White Crane

Josey, thank you for sharing your update. It breaks my heart that you and he are having to go through this. My prayers are with you and your dear husband.

Brenda

Battlebuddy

Josey,

Thanks so much for posting this. I am with you in late stage 7 . It is very similar to your experience , but with some differences. One is my husband has been loosing weight since October. He is so skinny I just think I can see pretty all of his skeleton. I feed him but the brain doesn’t know what to do with the food.

It’s just heartbreaking. I don’t post that much anymore because I just think no one wants to hear what the very end looks like.

I think I am a little ahead of you in that I expect my husband to pass this Summer. He is about 10 minutes away from sleeping round the clock. When that happens I won’t be able to get food in him. He is falling asleep now as I feed him so it won’t be too long.

We are also on the three meds you are , and yes it’s very hard to figure out when he is afraid or in pain or anxious. I do the best I can making that call, but I’m not a medical person.

Perhaps I will start being brave like you and post what’s going on here too

M1

Battlebuddy, thanks for the update. Post when you can, both of you. Will be thinking about you. This part of the journey is important, too, and hard on you.

Vitruvius

DW and I are following behind you in stage 7 I have the same concerns as you have expressed. I hope it all goes quickly and peacefully for your DH.

Marta

Josey - don’t be discouraged about your son’s lack of direction.

My oldest son, having watched his father wither with this awful disease, and in the middle of the pandemic, went to nursing school and is now graduating! He is 43 years old.

JoseyWales

Beachfan - I think of you often. I know we're just now heading to where your husband was, with sleeping and in bed more and more. I'm so glad you shared your journey. You gave me a little bit of a roadmap.

Battlebuddy - I think there are more of us at this end stage than we know, and we all get quiet. Which is partly why I posted. We're walking the same road, and I just hate it. But at least I know there are others here with me who get what I'm saying.

Marta - Congratulations to your son! And thanks for the reassurance for mine. He really is a great "kid" and I know he'll find his way.

toolbeltexpert

Josey all I can say is I agree with you, hoping my dw doesn't know. I can't help but wonder at times that she does though. I hate Alzheimers. I hate medicine side effects, I hate when my dw vaccillates between lucid and lost, never knowing if this is the last time she will recognize me. They are changing dw's meds from Lexapro to Prozac and now she has commented that she cant remember anything and its driving her crazy.

Josey I pray everyday for us all, that is all I can do anymore. Sorry this is late in this thread it didn't post. I found it in my drafts?