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    I would like to get the response from some of you dealing with these last stage days with me!! My husband really not able to communicate any more. Just occasionally something that makes sense. Walks if someone helps him get up and walks with him. Feeds himself a little with prompting and help. Sits in recliner most of the time. Just dozing. Most of Day. Sleeps ok at night. Little recognition of me anymore! Sad sad days!
    This is typical and somewhat gentle.

    My husband had seizures, myoclonus, hallucinations, and terminal restlessness in addition to choking on solids and liquids, refusing to eat, and falling, even though he wasn't supposed to be walking or standing. He also napped a lot. It is all part of this terrible disease.

    It is said that hearing is the last to go so soft music and telling him stories while gently stroking his arms or rubbing his head might be comforting. Once hospice was able to control the pain and seizures, I think that my husband knew I was with him and I tried to speak softly and gently touch him.

    Yes, this is a very sad time for you, Ky caregiver. I hope you have support and love from family and friends. If your husband is not in pain or agitated, there is much to be thankful for even during this sad time.
    Yes I am so happy he isn't agitated or in pain! It is avery bleak situation for all of us in this terrible circumstance! Did u have your husband at home?
    • CommentAuthormyrtle*
    • CommentTimeJul 15th 2017
    That's what my husband was like, too. Mostly, I just sat beside him. When he was awake I held his hand and when he was asleep I read and sometimes I brought some hand work like sewing on buttons that always seem to fall off my winter coats. When he started to slide out of a wheelchair, Hospice provided a Broda chair that had wheels but supported his body. A couple of times I used it to take him to hear singing groups and he would clap and smile but then fall asleep in the middle of it. Now that I look back at this time, I realize how awful it was and how much it took out of me but even so, I would go back there in a minute if I could.
    • CommentAuthorcassie*
    • CommentTimeJul 15th 2017
    Yes, KY this is a sad and difficult stage. I know that I did a lot of aimless driving which my husband really enjoyed
    and he seemed contented.
    But there was always a voice in my head screaming "where are you, please come back."
    You will get through this, just look behind you and see what you have already survived and then you will be able to keep going.
    I am glad that he is not in any pain but I can understand your very real pain which I think is so much worse.
    • CommentAuthorLindylou*
    • CommentTimeJul 15th 2017
    Ky caregiver, I echo Cassie to say that yes this is a sad and difficult stage. I am going through it now with my partner who I hope to keep at home if it is possible. I began feeding her in February, she ceased walking in April, and now, like your husband sleeps away much of the day. Although our conversations make little or no sense most of the time, they do communicate a caring relationship. My heart goes out to you.

    I'm assuming your husband is at home? Do you have help? I know I could not do this at home without the assistance of daily aides. We've been blessed with good hearted woman from all over the world who treat my partner with gentleness and respect. The aides, my church friends, and the caring support of the members of this website have all helped me hold things together here.
    I had my husband home to the end. By a year before he passed he was as you described, mostly sitting in his recliner in front of the TV. Sometimes awake and sometimes asleep. Then I arranged for respite at a NH so I could go visit my brother who was also in a terminal state. When I returned he could no longer walk and Hospice arranged for a hospital bed. Although he had days when he was agitated he was fairly easy to get along with.

    At first I moved a TV into the bedroom and played old Westerns on DVD's. Then when I could see that he was ignoring those, I had music playing most of then day.

    I don't think he was in pain tho it was hard to tell. He was in the hospital bed for 10 more months. At the end the Hospice nurse was having me give him the morphine that they have in their kit.
    Dee, I see you have an email address posted, so I'll send you a few pages from a journal I kept during my DW'S last few months after transitioning from Stage 6 to Stage 7. Every case is different of course, but maybe my experience will help you anticipate and deal with things in this terrible journey we're all on.
    • CommentAuthorbhv*
    • CommentTimeJul 15th 2017
    I just posted something about swallowing on Lindylou's post about losing it. Interesting stuff on the link I posted there.
    Here is another
    It says swallowing difficulties are part of the late stages. Here is the most helpful sentence

    "The lack of food or liquids in the last days of life will not cause suffering during the dying process, reports"

    I've been wondering about that since we signed our health directives years ago.
    God Bless each of you that is on or who has traveled this horrific road! This is my eleventh year. My husband is in a nursing home two blocks from my house. I am a frequent visitor. It became necessary to place him when I could no longer get him up from chair . He doesn't know where he is. He knows me occasionally Or recognizes that I amsomeone who cares. He sleeps a lot ! if he's awake we attend church services. They have several. And he enjoys it!
    • CommentAuthormyrtle*
    • CommentTimeJul 15th 2017
    God bless you, too, Ky caregiver.
    • CommentAuthormyrtle*
    • CommentTimeJul 15th 2017
    God bless you, too, Ky caregiver.
    • CommentAuthorRona
    • CommentTimeJul 18th 2017
    Even though I know what is coming it still tears me apart when reality hits and I realize where we are at. It has been over 5 years since diagnosis but In reality we are about 10 years in. Lisa has been in care now for over a year how can it be a year all ready. Now I visit about every 2nd day for a few hours She is about 25 minutes away I usually go over lunch time and help her eat her lunch. She is always happy to see me tells me she loves me but then can ask me about her husband. If nobody helps her eat she will maybe take a bit then just get up and start walking around that is what she does walks. It has been awhile since Fingers have taken the place of utensils and everything in front of her she says she doesn't like so hard time to get anything in her, even tomatoes her favourite food she says she doesn't like. Find also that sometimes when I feed her she will open her mouth then not close like she has forgotten what to do or just take a small bite and spit it out. Having said that she has put on weight I think mainly from being less active she was always on the move before. Totally incontinent now last week we went out for a walk, usually take the dog and we go to a dog park along the river about a 15 minute walk, while there she wet herself pull-ups didn't hold soaked her whole leg she was oblivious it seemed a long walk back. She is toileted regularly but now does not seem to necessarily help she just lets fly. She always bends down to try and pick things up I am now very careful to hold her as she is unsteady at times. At times I just come in she may be tired I will just lay with her on the bed. Lately after a little while she will just get up leave me and start to walk around. The other day she got up went to the door and just stood there like she forgot what she was doing.

    I am waiting for the next shoe to drop, another old saying, is she close to not being able to walk? Is she close to not eating at all? I don't know I don't know where we are at but I know it is a long way from where we were a year ago. A very difficult time indeed for all of us. I have feelings at times that I do not want to go anymore, selfish, maybe, it is just so hard to watch, but hey like all of us it is what we will do, it is out of love it is what we owe our partners. At times wanting this to end but knowing what that means and realizing that is not what I want. Nobody deserves this especially such a wonderful person as my wife.
    • CommentAuthormyrtle*
    • CommentTimeJul 18th 2017
    Ron, I remember when you made the decision to admit Lisa to LTC and I can see how far things have gone from a year ago. You are doing everything you need to. There is no telling how she will progress but I hope that it goes as easily as possible for you both.

    Now that my husband is gone, I realize that, even in hindsight, I could not say what I wanted to happen - ending it quickly vs. wanting him to live longer. Remember, though, that thinking about what we want is a waste of time, for how fast the disease will progress is not up to us. We are just along for the ride.
    • CommentAuthorRona
    • CommentTimeJul 18th 2017
    And what a ride it is. After reading these posts and writing that last post I went in to see lisa today. So we went for a walk with the dog but all of a sudden it was like she could not stand up. She was shuffling, I was holding her but almost like dead weight, could not stand straight leaning forward appeared like she had no equilibrium. I wasn't sure if we would even make it back but we did got to the door and put her in a wheelchair, they checked her vitals all ok. She couldn't sit up straight falling to side appeared almost asleep. Sounded just like what a lot of you have described.

    So asked questions about what has been happening. She walks from time she gets up untill she goes to bed then sometimes gets up in night and starts walking again, one theory plain fatigue. Also she was agitated this morning so she had been given a rpn a low dose of Ativan. Was fairly hot out but we were not gone that long. Or could be just progression? Well fed her lunch then tried to get her to lay down didn't last long and she was up and about again but more stable and appeared more with it. So I don't know but I think maybe a combination of the Ativan, being tired and being outside? Just hope it is not the new reality.
    There is no question that they are all going to deteriorate. I found that the same stage would seem to go on forever...until it didn't. And we would be moving right on down the descending spiral. My DH did not go peacefully, sleeping his life away the way some do. I had the dickens of a time dealing with restlessness, sleeplessness, agitation, and some combativeness during the last four months. He finally went comatose the last five days of his life, but that was after some really distressing agitation and restlessness...mercifully eased by small doses of oral morphine administered into the back corner of his mouth with a small syringe. (As Myrtle described upthread.) I remember only too well the conflicted feelings of wanting it to be over but knowing that that would mean his death. And then you get into the bereavement issues...a whole other subject.

    Where is that Cottage on the Lake? I think I need a brief visit there tonight.
    • CommentAuthorLindylou*
    • CommentTimeJul 18th 2017 edited
    Elizabeth, Cottage on the Lake is really on a lake in MA or next to where ever you need it to be. It is, or reminds us of, a cottage as it was fifty years ago, before open concept and master en suites weren't even a concept. The upstairs bedroom walls are 7 1/2 feet high, and you can have conversations over them. Nice beach with a wharf (dock) that has a little gazebo on it. Water temperature just right for a swim. Screened porch runs the length of the house, has a couple of chairs and couches on one side, picnic table with benches on the other. Lots of old books in the book case, Myrtle has found some of them.

    A wish will get you there, key is under the mat. I'll swing down after things are settled here and spend some quiet time there with you and anyone else who comes on the cottage page.

    Rona, it was just in January when my partner's physician said she was half way between being able to walk and not walk. She was needing assistance walking at that time. We'd be walking and it was just like she forgot how to do it, mid step. Its sort of what we're facing with swallowing now. Half way between being able to swallow and not swallow. She can eat or drink and suddenly right in the middle of things she doesn't know what to do with the food. Thoughts and prayers continue to go out to you.
    • CommentAuthormyrtle*
    • CommentTimeJul 18th 2017
    Rona, My husband entered this stage when he was being taken to the canteen and as he was walking down a hallway, he put his back to the wall and slid down it until he was in a sitting on the floor. The problem was not his legs. It was his brain.
    From that time on, he was in a wheelchair whenever he left the unit.

    Elizabeth, I'll meet you at the cottage.
    To Rona .....

    I've been following your sad journey since you first joined us here.
    Although your situation is much worse than what I went through,
    I relate to so much of it. Your love for your wonderful Lisa comes
    shinning through in all your posts.

    Each one of us looks back upon his own wife and considers her a
    Trophy Wife that was the ultimate grand prize of all time. I personally
    considered it the greatest achievement of my life that I was able to
    win my Dear Helen for myself. It's really hard for me to believe that
    such a pretty and exuberant little girl could fall in love with just an
    ordinary guy like me. And best of all, over the 66 years that I had her,
    she seemed to become more beautiful and vibrant as she aged.

    I'm sure ut's the same with you Rona ..........
    • CommentAuthorRona
    • CommentTimeJul 19th 2017
    Thank you all for your comments and understanding you understand what this is like and what it feels like. I am heading In Shortly hoping that yesterday was just a bad day and that things will be better today will let you know.
    • CommentAuthorRona
    • CommentTimeJul 19th 2017
    Well today was better the general consensus too much Ativan on board. I get confused at times. I got a call from the SenIors Outreach Team SORT last week saying they thing everything has stabalized and they now will be bowing out. Wasen't that comfortable with this as this team nurse neurologist etc were the monitoring body to ensure care plan was in place and was being carried out. They felt before the facility was not using the PRN's enough, drugs that can be administered on an add need basis, but now they are and agitation and fearfulness is more under control.

    Well she gets a daily dose of Trazadone, Olanzapin, and escitalopram. Then as needed Larazepam, Olazapine, Trazadone, and at times Ativan. This seems like a lot to me. Her agitation and fear have been better I agree she is much more settled but we have talked before about not wanted her snowed under like she was yesterday. Anyways good discussion with staff then with head of care, she was already aware of what happened, so they are monitoring and will only use Ativan as last resort. It was a temp on duty yesterday and read in file to use drugs liberally so think that contributed to the problem she was very concerned we had a good talk. Don't understand SORT recommending use of more drugs, i know it is a fine balance and believe everyone is trying but everyone needs to be on same page here. Just need to stay on top of these things all the time.

    Also has been complaining. For a long time about sore legs, back, feet, then nurse today said muscle pain listed as a side effect of I think it was Trazadone anybody had experience with this?
    • CommentAuthorRona
    • CommentTimeAug 11th 2017
    I think we are at the point where she is forgetting how to walk. Tried adjusting meds in case muscle pain was side effect from drugs. tried pain relief everthing just getting worse. Now when walking she will just try to sit down on her bum. This started about 10 days ago the odd time now getting worse Is this what forgetting how to walk can look like? Walking with her and our dog is what we have been doing and what she has enjoyed. She is also starting to shake and her agitation has become worse again. Got a call she hit somebody again yesterday. Oh boy everything just seeming to move so fast.
    • CommentAuthormyrtle*
    • CommentTimeAug 11th 2017 edited
    Ron, Yes, This is what forgetting how to walk can look like. If you look at my comment on July 18, you'll see how my husband did that. After that incident, I always used a wheelchair when talking him out of the unit. You're right, things move slow for years and then they move so fast.
    • CommentAuthorRona
    • CommentTimeAug 11th 2017
    Yes Myrtle thanks I had read your comment he slid down then couldn't walk again she continues to walk and seems fine then just slumps down. I guess I just didn't want to believe this was happening.
    • CommentAuthormyrtle*
    • CommentTimeAug 11th 2017
    No, He could walk again after that incident. It's just that the canteen was quite a distance from his unit and on a different floor, so they would not let him walk when he left the unit. After a while, he started to be hesitant when he walked. A couple of times he got out of bed during the night and they found him sitting on the floor. After that, they would only let him walk with someone helping him. (He was too confused to use a walker.) It was a gradual process. Probably different for everyone.
    • CommentAuthorLindylou*
    • CommentTimeAug 11th 2017
    Hi Rona, Last February was when my partner was in this in-between stage of being able to walk sometimes (with assistance) and not being able to walk at all at other times. This was a very difficult time, especially since she could not remember that she could not walk without help. Hyper-vigilence was required at all times, as I am sure is the case now with your wife. I was told (was it by Elizabeth?) that things would become easier when she could no longer walk at all. And it has become easier, in part because my partner is so small that helping her transfer is not too difficult.

    The shaking could be due to her meds. Maybe you should check that out with her doctor. It is difficult with some people to find the right balance with minimum side effects. Since my partner has a seizure disorder in addition to her dementia meds have truly been a balancing act for us at times.

    Prayers and thoughts go out to you both.
    The thing is, the Alzheimers is damaging the brain, and while we know in fairly broad terms what to expect, it's impossible to predict exactly what is going to happen because there is some differentiation from patient to patient. Some sleep their lives away, some get very agitated...and of course there is the forgetting how to walk, how to swallow, etc. that is so common. And give them a walker or wheelchair and they forget to use it...or forget how to use is so difficult for the caregiver--as we may have mentioned a time or two on this forum. But they do inevitably go downhill--sometimes rather dramatically. There can be long periods where not much seems to happen...and then it does. Sigh.
    • CommentAuthorRona
    • CommentTimeAug 12th 2017
    Thanks everyone yes we know all of this but knowing it and living it well that is a different story isn't it. At this point Lisa can still walk she still walks all day but the episodes of slumping down are becoming far more regular. Staff is afraid she is going to have a fall and suggesting should just spend time with her getting her to be quiet, just be with her and keep her calm rather than taking her out for a walk. I certainly will miss our walks with the dog she enjoys them so. Sometimes I just lay down with her in her bed but even then she will get up just head out the door and start walking.

    I know I told you all went through this with Lisa's parents her father passed away a couple of years ago I saved his wheelchair, thinking perfect size for Lisa, it is downstairs. Hope we don't have to use it for awhile yet.
    Oh boy
    • CommentAuthorCharlotte
    • CommentTimeAug 12th 2017
    Will the dog ride in the wheelchair? If so, maybe when you go visit she can push the dog in the wheelchair. That way at least for that time she will have something to hold on to and be 'helping' the dog. just a thought
    • CommentAuthorRona
    • CommentTimeAug 12th 2017
    Thanks Charlotte Jake is s live wire don't know how he would take to that. She is not at that stage yet (I hope) but today prior to me getting there she slumped down a few times then sat on the floor and couldn't get up. They have a No lift policy and since she couldn't follow directions on how to get up they had to use a lift apparently she didn't like that. Also has become very afraid again she just kept repeating I am scared. I think somewhere she knows things are not right and is afraid as nothing makes any sense to her she has been saying to me I am dying.

    Tough morning.
    • CommentAuthormyrtle*
    • CommentTimeAug 12th 2017
    This is so hard for both of you. Hang in there, Ron.
    • CommentTimeAug 13th 2017
    Rona, you wrote, "Also has become very afraid again she just kept repeating I am scared....She has been saying to me I am dying."
    This is a hard place.
    When Eric got to that point, I wasn't sure how to answer. He was always a very shy person and hated attention, especially at cocktail parties, which he felt obligated to attend as an author promoting his books. Just before we would go into the party, he would say to me, "When I give you the signal, let's leave."
    As the disease progressed and he became more frightened, he said, "Mary, let's leave."
    "Okay," I said.
    He died early the next day.