The Good , the Bad , and the Ugly of late stage 7

Battlebuddy

I’m posting this mostly for Josey Wales, and for others who are now in 7 . I want to be fair and give an accurate picture of what it looks like for others.

So just as a little review, my husband 59 has had Alzheimer’s for 7 years. He has never hit a plateau , but just crawls along at a glacial pace. He is at home on Hospice ( never anywhere but home) for two years. He has just enough decline to be renewed every 60 days. He is bedbound, contracted, and sleeps most of the time.

I would say the good is that he sleeps so much that he is easy to care for. For example, I could easily work from home in this stage. I fill my days with reading , gardening, home projects , and the daily trip out to stores close by. It’s peaceful here and quiet. These are a lot of things you all would kill for- a few moments of peace to do what you want. He is medicated when needed and gets great care if I do say so myself.

The bad is there is only minimal interaction. His quality of life has sunk to just about nothing. He went from being awake an hour in the morning and an hour at night, to 30 minutes each, then 15 each . Last week he was awake about 5 minutes each . He used to at least enjoy a little time with his wife and his favorite tunes and food. Now it’s more likely he will fall asleep halfway through the meal. I have begun to feel like a human feeding tube, for a person who is barely awake , eating with eyes closed. It’s a gray area. Is he actually awake? Half asleep? Asleep? Not really sure .

The ugly. He has lost weight since October and has Cachexia . I’m watching him waste away, and it’s graphic and visual. I’m probably going to have some PTSD / nightmares of being chased by skeletons , or something I will have to pray away. I’m feeding a body that doesn’t have any idea what to do with the food at this point.

So there we are: the good , the bad , and the ugly. His BP and respirations have begun to lower so I think that maybe just maybe I can see the light at the end of the tunnel? Maybe? Please God. I , more than anything else , would like just be able to plan something. The not being able to plan has been a killer for me . Hate living day to day.

Thanks for listening

Ed1937

Thank you for sharing your story. You were right when you said stage 7 is something we don't hear a lot about. But it's part of the disease, and should not be hidden. I'm sorry you are both going through this, and while this might sound really bad, I hope it doesn't last much longer. When he gets to rest, it will be your turn, but it will be a different kind of hard. I wish there were an easier way.

joant

Battlebuddy, you are a saint. It's horrible to watch someone continue to decline and painting this picture of the last days was very helpful to me, awareness is essential to a caregiver. I am really astonished that hospice doesn't step in and do what they do, expedite his passing. Maybe your requests are not being heard by the right people. I would fight to have his living will enforced, he can't get any more terminal than he is. God Bless You.

Beachfan

Battlebuddy (and Josie and all those facing stage 7 in silence),

I am so very, very sorry; I can’t say it enough. BB, your 2 year Hospice, sleeping, wasting away, no interaction, no reaction was compacted into 3 days for me and for that, I am blessed and eternally grateful . Whenever I would pray for DH. I would ask that he be kept “safe and dignified “; my prayers were answered, I believe. My memories of him (and those of the kids and grandkids) are of him just resting peacefully and slipping away. In my mind’s eye, I envision his final days and moments with calm and a sense of personal contentment. I could not have asked for a more satisfying transition. Would that all of us be so fortunate under such devastating circumstances.

You and Josie (and others who may post later) are so brave to share your stories and experiences for the benefit of those just starting out or midway through this journey. I admire you, I commend you, I pray for you, I cry for you. May brighter days follow. Stay strong.

Battlebuddy

Hospice has been wonderful. I’ve talked all this over with them. They don’t expedite anyone’s passing. They give comfort care. We are all just waiting for him to finish his journey. As soon as he sleeps round the clock and is not awake enough to eat I’m letting him go

Vitruvius

BB you have outlined my big fear. My DW is now early stage 7. She is on hospice, wheelchair bound, she must be hand fed, she sleeps longer, about 16-18 hours a day. She is mostly incoherent, but remarkably she can still clearly recite a few rote phases. Even more remarkably after years of not knowing who I was, she now routinely refers to me by my first name even if the rest of what she says makes no sense. She is largely unfocused on what goes on around her. She will frequently zone out and ignore me as I sit and hold her hand. 

DW is 72, but was always healthy, fit and active, she has no other health issues and has longevity in her family. And therein lies my fear that she will linger on and on with a ever declining quality of life. It is painful to watch, more painful than dealing with her distress while she endured stage 6.

How is it possible to feel anything but anguish when I think that it would be a blessing for this to end sooner than her otherwise normal lifespan. 

JoseyWales

Battlebuddy - I finally found enough time to read some more posts and just now saw yours. We're in such similar, but different, places. For some reason I had forgotten that our husband's are the same age. My DH is in memory care, so I don't have to see him all the time. I don't take care of most of his needs, except help him eat a meal when I visit. I just can't imagine what you're going through day in and day out.

I get what you mean by making plans. It's a kind of limbo.

My DH also has low blood pressure and heart rates at times. Hospice attributes it to "deep sleep." It comes back up.

For a while DH was losing weight. For those not at stage 7 yet, hospice explained to me that his body is just not able to do everything it should, and the ability to digest goes along with everything else. But for my DH, it seems like he wasn't really to that stage yet, just wasn't eating as well as he should have been. Some changes to food and medicine and his weight stabilized.

JoseyWales

I'm sitting here thinking about feeding in late stage 7. It's so hard to feed DH now. He also closes his eyes when eating, and then seems to stop chewing. I can't always tell if he's fallen asleep, just closed his eyes, already swallowed the food or has it in his mouth. I don't try to put food in unless he actively opens his mouth. It can take an hour to eat a small meal. He drinks liquids through a straw, but more and more I need to put a little of the drink in his mouth before giving him the straw so he understands he needs to suck on the straw. Otherwise he tries to chew on it.

Stage 7. It's crazier than I imagined.

ButterflyWings

(((BattleBuddy))) - I think our LOs were tracking at about the same pace for a while last year and then my DH seemed to plateau. We are stuck at 6E with occasional 7 moments. It is tough but I believe what you are weathering is so much harder than where I am at the moment.

I know it is all hard, for all of us and our LOs. I do hope DH does not continue to linger, though it sounds like he could given the overall health and so forth. You are providing such superior care, what a blessing you are. My heart goes out to you, to Josey, Vitruvius and all our other forum mates who may be stage 7 long haulers. Holding you all in the light.

fayth

Battlebuddy, my husband died in February at age 68. He was diagnosed in 2017 and was probably symptomatic for 3 years prior. Stage 7 was much the same for my husband. He was in stage 7 for about 2.5 years. He was easy to care for by then, and I do not believe he was suffering. But it was agonizing to witness him wasting away and becoming skeletal. It was not possible to connect with him for at least a year. We had the help of hospice for the last 2.5 years and they helped me keep him home for most of that time. He went to memory care for the last year. By then he had no awareness of where he was and who was caring for him and I had other family members who needed my time and attention. I find that it is very hard to learn how to make plans again, but I'm working on it. I am so grateful that the struggle is over. As everyone knows, AD is horrific. But I miss him very much and am grateful that we had many many good years together.

Howaboutnow

i appreciate the later-stage talk very much. I desperately hope to keep DH (end of Stage 6) home while also hoping i don’t lose my mind in the process. Side note, seems Drs use the 3 Stage scale over the 7 Stages of the FAST scale. I understand the time-line is unique for everyone…but it does seem the specific order of decline & lost abilities do follow a largely accurate order.

So it feels helpful to have an idea of where I’m going next with the FAST scale, even if we can’t know how long each step lasts. Whereas i feel like the 3 Stage Scale doesn’t offer any guidance or preparation. Opinions on that?

Again,,,thank you to everyone willing to talk about this. I’m a bit desperate lately and reading about others helps.

Dio

I suppose it's even harder to gauge for LBD patients, except when it's the "last stage." While DH is physically still very strong but walking as if he were 20 years older, his mental decline is very visible. When incontinence started, some websites say it's nearing the end. What does that mean, really? He's still eating, however, he is scarfing down food like there's no tomorrow. He's still plagued with fear, anxiety and resisting shower or regular hygiene like changing soiled pants. Medication adjustment is ongoing every month it seems. I also understand that this can change at the drop of a hat. Roller coaster is an understatement, and it's a roller coaster built on a slippery slope. Hence, in my case, I can't think about which stage until the last stage. Thank you for sharing your stories.

Lgw

Your comments so mirrored mine but I was blessed that his only lasted 5 months. Watching him become a skeleton was so difficult. He had a full beard so it hid the look in his face. When I had to trim his mustache I was shocked to feel how bony his face was. When he began to choke on even water Hospice told me it was time to stop all food and liquid, that to gag on food would be much harder on him. I stopped and he surprisingly never asked for anything. After 7 days with no food or water a new Hospice nurse came in and continued to coax him to eat or drink. I was livid. Thankfully he refused. I reported her to the Hospice office and asked she not be allowed to return. They apologized and she was replaced. These days are tough and I suggest you get hugs because they will end. May you know that your time will be your own.

GothicGremlin

I saw this thread a few days ago, but was too afraid to actually look at it since my sister is straddling the end of Stage 6 and the beginnings of Stage 7. I wanted to know, but I didn't want to know, if you know what I mean.

Finally, here I am.

Peggy's still physically very healthy, but unlike @Vitruvius longevity is not in the family genes, so I don't think this will linger for years. Her appetite is just now starting to slip, and over the last month I could tell that she's lost weight. She's still at the finger foods stage, but it takes her forever to eat a meal. We all tend to help her when she drinks liquids (holding the glass/cup for her). Peggy still walks, but barely. If we go up and down the halls, we use a wheelchair.

So now I kind of know where she is and what to expect.

Thank you @Battlebuddy for your post. It can't have been easy to write...

And thank you to everyone else in this thread for discussing Stage 7. I won't lie, I'm terrified of what's coming, but at least I now have knowledge, and that's a big help.

Jeff86

Thank you battlebuddy for the searingly honest look at stage 7. I appreciate it, as hard as it may have been for you to write and for us to read. You are my definition of courage. Staring into the abyss and carrying on as best you can, and as you must.

My DW has been in late stage 6 for some time now. (How about now, I’m with you about preferring the FAST scale.) There have been some changes recently that may mean we’re approaching or entering stage 7. Tbh, I hope DW doesn’t cycle all the way through the sub stages of stage 7…not that I control it. I’ve always wanted to be clear eyed about what’s next, but I’ll admit that as awful as each stage is, as much as the losses mount up, I dread stage 7 more than what we’ve already experienced. I think that’s because there is a lot of potential physical suffering that I’d do a lot, if I could, to spare my DW.

Paris20

Thank you. I know I’ll be seeing this in the next year or two in DH, diagnosed 8 years ago.

Crushed

DW has been stage 7 for over 5 years . She is 71 and very healthy for a person with no cognitive functioning. Not on hospice . Weight is steady Has to be hand fed and has no reaction to people. She looks lovely . Breaks my heart

Karen-luvsumer

Mine too, I’m so sad for both of you.

M1

Agree that this is very helpful for those of us at earlier stages, appreciate your honesty and candor. Thinking of all the fellow travelers tonight.

toolbeltexpert

Just want to second what M1 said.

jupteq

My DW (almost 74) diagnosed with AD a little over seven years ago. Went through the stages fairly quickly until she got to stage 7. For the past two years she has been bedridden with no communication. Rarely any eye contact. She does eat well (I feed her small bites with spoon) and does not sleep excessively. She was in home hospice for nearly a year in 2021-2022 but she was discharged in September 2022 because she was not getting any worse. Don't know if this will go on for another week or 5 years. Every AD case is different.

tboard

https://alzconnected.org/discussion/65787/the-good-the-bad-and-the-ugly-of-late-stage-7

Thanks for sharing this. I think my DH is in stage 6 for the last year or so. He used to sleep a lot, now he is awake most of the time which means I can not work. Gardening is possible but only because of cameras in the house so I can keep an eye on things when I am outside. I wish he would sleep through the night but that is rarely the case. I need a lot more sleep than I am getting.

RetiredTeacher

BB ty for posting this raw and real post. The heartache you are going through is helping the rest of us understand and attempt to prepare ourselves. Your insight will help so many going behind you. We are not there yet but we all wonder what it will be like and how we will be able to handle what comes next. I hope for an exit route like many on this site but I realize it often runs its course. Ty for sharing this painful, heartbreaking story of daily struggle with all of us. Sending a heartfelt hug and prayers.

Vitruvius

I commented on this thread when it started, back in 2023. At the time, 26 months ago, I expressed my fear that my DW would "linger on and on with a ever declining quality of life".

And so it has come to pass. Hospice told me a year ago, on Oct 14, 2024, that my DW was considered to have entered the very last Stage 7f. She is in a minimally conscious state, with a body that is emaciated with severely contracted muscles. She has no response to external stimuli except for a primitive feeding response that keeps her alive. The staging guides say that when she can now longer smile, death is near, but even this has been drawn way out. Her contracted muscles include those on her face and she has had a perpetual grimace/scowl for at least a year.

Battlebuddy's DH died only about a month after her original post, and many others who were in Stage 7 at the time have also since passed. Except for my poor wife. We keep hoping the the off ramp arrives soon.

GothicGremlin

@Vitruvius - when I saw this thread come up a couple of days ago, I thought about you and wondered about your DW. I'm so sorry this has gone on for so long for both of you.

It was sobering when I saw the date of my post in this thread - August, 2023. That was probably the last month where Peggy had any good quality of life. She passed away in March, 2024 at age 64.

midge333

@Vitruvius : I think of you often. I am in stage 8 and honestly, I hope you join me soon. Good thoughts for you and your DW.