Thank you sunshyne... Lynn was on nemenda for 4 years, he consistently lost weight on it. The doctors stopped treating with nemenda as he continued to decline and his stomach was killing him. As soon as he came off it, his stomach stopped hurting and he was much clearer for awhile too. Each person is different, I am glad it is working so well for your DH.
What concerns me is the weight over the years has been gradual, but this last 20 pounds was much quicker and he looks like a cancer patient about to lose his fight. It is painful to see, I can't imagine what you must be going through trisinger.......
Trisinger, haven't heard from you in a few days... How is your DW doing? I hope she has fully recovered from her fall. How did the weigh in go this week? Keeping you all in my thoughts, Nikki
My DH has lost about 45 lbs since last year, down 9 since December. The doctor started him on megestrol 40mg twice a day for 3 weeks, his appetite definitely increased and I incorporated ensure plus between meals. The thing is he is eating but not gaining anything . He is 6foot 6inches and his waist is now 34inches I am really concerned because not be able to gain not 1 pound since December. He insists that nothing is wrong with his appetite and will not let me get a refill of the megestrol, since he is eating but just not gaining. He is in stage 5.
Generally, from what I've read, the eating but not being able to stay at the same weight is a later stage than stage 5. This would really worry me as I know it is really worrying you.
Is anyone experiencing low BP? My DH BP has always been my envy, but at the AD clinic it was 86/60! No wonder he has cold hands and feet. No one said anything and I didn't either. I guess most don't die of low BP - but that seems like a peaceful way to go. So, how low can that go???
Actually pretty low. I've scared the daylights out of paramedics on the way to the hospital and nurses in recovery after surgery. If it had gotten too low you would have been on your way to emergency in an ambulance.
I don't know. I just remember just how upset the person taking the blood pressure was, and how happy they were a few minutes later when they actually could get a reading. It is possible that they hadn't been able to get a reading at all.
Hi I'm new here. wish I had read this a few months ago. My DH was losing so much and the neurologist suggested feeding tube which I did. Now I know it was the wrong thing to do. He is in Hospice now and at home. I just give him 2-3 cans of formula a day. His GP doc calls it comfort food. I think its for my comfort. His doc explained how the body shuts down etc. and he isn't in any pain. The only pain is seeing him like this after 50 years of marriage.
LeeLyle - I grieve with you. Hopefully your DS will have a timely death. How lucky you are to still have him in your home and with the wonderful Hospice help. Let us know how things are going.
Hi Leelyle, welcome to our family. Yes I wish that you have found us sooner, before the feeding tube. But I am glad that you found us now. I hope that your DH has peace leaving his AD riddled body. I am married to my DH for 48 years.
Leelyle, welcome, sorry you are seeing the end stages of AD with your Dear husand. this group is a fantastic source of info and working knowledge. stick around and help out some of the others who have just joined and in the early journey. divvi
Frand, DH BP was also very low in ER. 88/45. shockingly low. we found the blood pressur meds and namenda were taking it too far down. he got off the namenda and we reduced BP meds to only 5mg day/ and hes back to 130/78. hallelujah. could be meds hes taking in combos, or then like i said in other post dehyrdation. you can give water and it will bring up the BP!! lots of water...divvi
Hi, Leelyle, welcome! I am so sorry for all you're going through. It is so hard to helplessly watch a beloved husband dying. I hope there is something we can do to help.
divvi - We are now off Namenda, so maybe that will make a difference - who knows? They cut out the Namenda because it may cause hallucinations - something we are now adding to the mix! Why was your DH taking BP meds if it is so low?
frand, my husband's blood pressure started getting too high, so he's been on meds for that for years. The meds control it, except sometimes something will upset the system, and his blood pressure can get way too low ... or way too high. So far, every episode of one or the other has been transient, so we haven't had to adjust his meds. But it can be scary.
Welcome LeeLyle and thank you for telling us about the feeding tube. We've read about that in one of the online books Hard Choices, but you've got personal experience. That is the biggest thing about this site. Everyone's personal experiences. Thank you for sharing yours.
LeeLyle, I too would like to welcome you and I am so sorry to hear you are facing this final stage. Keep posting, share only if you want to, and what you wish to. Keeping you in my thoughts, Nikki
frand, Dh has had high BP for 40yrs. his obstinance of not getting his meds on a timely basis and or taking them on a routine basis for those 40yrs, finally led to ministrokes and the dx of vascular dementia and/or AD. it was a super shock to see BP drop so radically, it did that only after changing his reg bp to another which didnt sit well with the namenda combo. hes on norvasc 5mg and diovan now its working nicely without the namenda added. hoping your dropping the namenda helps some for you as well. divvi
Greetings Everyone, Thank you so much for your kind thoughts. Frand, Sterling, unshynSe, Nikki and anyone else I might have missed. Ftd, I know its hard to see your LO lose. Mine was usually about 150-160 #'s and dropped to 135 in 3 months. He is 6'1" so skinny all his life. He is now at 132. I asked Dr about megestrol and he said it wouldn't really help, as you described. Now I know what Doc meant when he said he would eat but not gain. Your hubby may be progressing slowly to the next stage. It seems like mine would go back and forth. One day, he wouldn't remember someone and 2 days later I would ask him about the same person and he would know exactly who I was talking about. Nothing seems cut and dried. Frand, I was reading the incontence discussion and saw your entries. Keep that sense of humor. I need it to keep me sane. I commented on that disc. too. til later again thank you all. Even eho I may not always make comment, I will be reading yours....
Make that Sunshine. sorry about that. Also Dr. took Bob (My sweetie) off of namenda and exelon cause they caused so much stomach problems. The exelon patch, i understand works better for stomace problems as it is slo release...
The patch is easier on the stomach because the drug bypasses the stomach entirely -- it enters the system through the skin instead. Is your doctor trying that, now?
With this disease, the only thing you can do is try something, and see if it works. Put the patient on something new, take the patient off something to see if it's started causing a problem... I hope you find a way to make your husband more comfortable.
Sorry about that...I took the grands to Corpus Christi for the weekend. It's an annual thing.
We were at the same hotel that we went to last year, when Andrea could still travel. It was hard to be in the hotel room and think she wasn't there. Of course, the last time, it wasn't so funny. The grands had gone out with TIna to the beach, and Andrea and I were up in the room. She was lurking, as usual, hiding out in the bathroom peeking at me once in awhile. It was best to just let her lurk, and while I was lying on the bed, I drifted off.
The phone rings. It's the front desk, asking me if I wanted to come down and get my wife. HEART ATTACK CITY!!! I raced down, and she was down there. Turns out one of the grands had probably not closed the door all the way, and all the time I thought she was lurking, she had wandered out and down the hall. She was noticed by a cleaning lady, who couldn't get any info out of her. The cleaning lady took her to the front desk, where they tried to find out who she was. I shudder to think what would have happened if they had figured her for a mental case and turned her out onto the street! By some act of God, she remembered my name, and they looked me up, and that's the story of why (although you may find it ridiculous), you inform hotels of your situation, and have them put a notation on your room info so that if this happened to your LO, your story has a better chance of a happy ending. We were just lucky.
Anyway, we're back. My DS looked in on Andrea yesterday, and I'll see her tomorrow. She is holding at 76 pounds, and is feisty as ever. She loves fruit, and I take her some everyday. She continues to 'fall'; it's really more of a slither. Kind of a slow collapse to the floor, no bruises or anything like that.
trisinger - Get the Safe Return tags from the AD site. Then you don't have to worry. For her it has her name and the 800 number, but just knowing her name might help in a hotel situation.
trisinger, would you please give us your travel itinerary in advance? Thank you.
Three years ago, my husband had to appear for a deposition on the other side of the country. I knew he was having significant problems, but he was still able to compensate fairly well in front of others. I had told and told the attorney there was something dreadfully wrong with him, and he couldn't possibly travel all that way by himself. As I'm sure you can all appreciate, the attorney figured I was a nutcase -- phone conversations had gone well (well, sure they had, I'd done all the talking) and documents were well-written (guess who did the writing.) Attorney insisted the judge would go after husband if he did not appear, so I decided there was no choice, I'd have to travel with him.
Husband was diagnosed with moderate dementia late in the afternoon the day before we were scheduled to leave. Since it was three hours later on the other coast, and our plane was scheduled to leave at the crack of dawn the next day, there was no way to reach attorney to see if we could now get out of the trip. I asked the doctor for a letter confirming the diagnosis, that I could take along.
We met with the attorney after we got to our destination. He thought the letter was mildly interesting, but insisted my husband was functioning well enough to testify. He also insisted I could not be there. I -- veeeeery reluctantly -- agreed to let the attorney drive husband back to the Hilton after the depo, but told him in no uncertain terms not to leave my husband alone -- to bring him NOT just to the hotel, but to the hotel room, and to turn him over to me face-to-face, to make sure I was holding husband's hand before he left. I told him the name and address of the hotel, and the room number, over and over again, and also gave them to him in writing. Sure, sure, lady. (Sheesh, REAL nutcase.)
Next day, I drove husband to the depo and turned him over to the attorney, went back to the hotel to wait. Time passed, it got later and later, I start pacing, I had no way to call to see if the depo was really still going on, it was too late to call attorney's office, I was in a total panic hysterical snit-fit. I'd never been to this city before (and hope to heaven I never go there again), had no one to help.
Phone finally rings, at 8:30 at night. It's husband. "I don't know where I am, can you please come find me? They said it's Lapinto." He can't explain more than that, and hangs up. Well, at least I know he's still alive... Phone book does not reveal anything vaguely resembling Lapinto. After a few minutes of thrashing wildly about, trying to figure out what to do, it dawns on me that Lapinto is possibly La Quinta. I check with the front desk -- there is a La Quinta about three miles away. They give me directions (I hate being without a map!!!) and I race madly over there. Husband is sitting dejectedly on the curb.
Attorney, despite the fact it was clear that my husband was having severe problems answering questions at the depo, decided it was late and he didn't want to bother taking husband up to the hotel room. He asked husband if he could find his room by himself, and of course, husband said sure. Husband has never in his entire life stayed in a La Quinta -- he ALWAYS stays at a Hilton -- and lord only knows why the attorney thought that's where we were staying. Husband was so stressed out he never noticed that the hotel did not look a thing like a Hilton. He went inside after attorney left, and tried to find his room. This didn't go well, since he didn't have a clue what the room number was, and didn't recognize the lobby or the hallways. After wandering around for a long time, he asked for help at the desk. Nobody registered by that name. Finally, someone asked to see his room key. This immediately clarified that he was the guest of a Hilton, but which one? They called around, found one that had someone registered by that name, and left him on the phone with the Hilton folks, who simply put him through to his room. Hilton never thought to ask what this was all about, so they had no idea my husband was lost, or where he might be.
Attorney got a major piece of my mind when I called him after we got home. "Well, geeze, he SEEMED okay to me." Very fortunate for attorney that we were separated by 3,000 miles...
Trisinger, I am glad things turned out safely on last years trip, I can imagine how scary that was for you! It must have been hard on you, taking the annual trip and not having Andrea with you. I am glad you went and hope you were able to still enjoy yourself. I am glad she is holding her weight and will keep my fingers crossed for today’s weigh in.
Sunshyne, I would have had that lawyer in a head lock *wink That was just so wrong on so many levels. Your poor husband!! I would have been frantic as well.
My DH has been 'lost' on more occasions than i like to remember in the past. once, i left him thinking, hes perfectly ok to sit here in the bar area while i quickly go up to the room, (we were at a mex resort) NOT! came back within minutes -he was gone, couldnt find him after hr looking, hrs later the staff using a passport foto copy found him in another wing riding up/down elevators looking for room. scary isnt the word.. another time i lost him in a dept store, same thing. they wont stay where you say, remember that-once you are out of sight, they act on impulse. divvi
divvi, don't SAY that!!! My husband is still at the point where he'll wait for me outside a restroom -- and he's certainly not far enough along to agree to going into the restroom with me, or letting me go with him. But my heart is in my throat every time I do that, scared to death this will be the time I won't find him when I come out.
It changes all of a sudden. One day I could leave my husband outside a store in the mall and he would still be there when I came back. Then one day I was approached by a sales person who asked me if I was the person my husband was looking for. Luckily, he had walked into the store I was in saying that he had lost me. Now I can't even leave him at the end of an aisle in the grocery store. After a few moments he starts to slowly push the grocery cart away. I sat him down at a table in Wendy's one day while I placed our order, checking on him periodically while I waited. Then someone came up to me and said, "He's walking out"---my DH had gotten to the door of the restaurant and was heading out. He didn't know where he was going. I don't ever leave him in a public place anymore. So far he doesn't wander out of the house, but I don't ever leave him there by himself either.
Wow! I'm not looking forward to this stage. The only similar experience that we've had was at a park designed to show what it's like to be Amish. My husband, who is only diagnosed with MCI, needed to take some pills. There was an ice cream shop near where we were. He saw it and suggested getting cones and water (so he could take the pills) there. I agreed and we walked toward the shop, with him a couple of steps behind me (I know!). I got to the door and turned around to see if he was going to open it for me. He was nowhere to be seen. I looked around and couldn't find him, but I didn't get too worried, because nothing like this had happened before. I waited outside about fifteen minutes, assuming he would turn up. About the time I was beginning to panic, he came out of a nearby building. It had a sign that said "Haunted Cavern". He apologized, said he didn't know why he went in there, and it was really dumb for him to have done that. A few days later, he told me he made a mistake because the signs were very confusing and he thought it was the ice cream shop. Hah!
There is ice cream at the Kutztown Folk Festival made by Amish ladies riding bikes. Obviously you don't use electricity to churn the ice cream if you are Amish. Actually I think the business might be run by Mennonites.
We were in Books A Million yesterday afternoon with my daughters. My husband loves coffee, and since he can't comprehend reading any more, he just strolls aimlessly up and down the aisles, I thought I would get him a cup of coffee and have him sit in the coffee shop area while we looked for books. I ordered him a Cafe Mocha with whipped cream and got him settled at a table with his coffee. I kept an eye on him while looking at the books. He stayed at the table. When I was finished shopping, I started towards him and realized that he had torn the seam of the cup open and was licking the remaining whipped cream off the inside of the cup! I turned my back so that he wouldn't see me laugh if he turned around. Then I went up to him and said "I see you are finished now. Are you ready to go?" and he said yes, and I threw the torn cup in the trash and we left! <grin>
ok just lettting you guys know there WILL be a first time you come back and they wont be there, and you will go bananas , like those of us before you!haha...its not funny and once you have experienced losing your AD spouse in public it will probably be the last time. divvi
Divvi, did you ever read my discussion about my losing my husband in the Dallas airport for five hours on our return from England - that was a day that I will never forget!
so sorry mary! ugh!! i know how you felt, all sorts of terror goes thru your minds..them out there alone, no food, unable to call, thank goodness for good samaritans and the safe return bracelets. divvi
Despite eating very well, Lynn's weight continues to drop. Fully dressed with work boots on, he weighed 119. It is so hard seeing him like this.... just breaking my heart :(
G is losing five pounds a month, and that is with adding 2-3 Ensure drinks a day plus ice cream, and other goodies. His Dr. said he wants to be able to tell him he has to LOSE weight the next time he sees him! Not likely. What is weird is G likes being so thin...at 6'6" he looks like a scarecrow. I think we'll have to get his "good" clothes altered for our cruise...if we can go at all..which could be in question now.
Lynn doesn't enjoy it all. It troubles him in fact. He asks me if he has been sick or something. :( The memory issues are a breeze to me now. They don't trouble me in the least. But this, this is eating me up inside....
G's ICD device looks awful thru his clothes now. He loves wearing the silky colorful t-shirts that look great with a sportcoat, but now....this square boxy thing just sits there looking ready to pop out. He actually gave me a hug the othernight, and I patted his non existant rear which upset him..not the patting, but the fact I felt there was nothing there. His new clothes we got last month just hang. I, on the other hand, have the opposite problem for the first time...annual physical tomorrow..can hardly wait for the "look" from my sweet Doc.
My LO "Bob" is preparing for Halloween. He is 6'1" & 126 lbs, down 25 lbs since Xmas. His Doc says no matter how much he eats, he won't gain. He is in early stage 7 and his brain is shutting his body down. He isn't in pain. Not even the hunger type. When we hug, I feel a skin full of bones. I used to tell him he never gained weight just to be hateful to me, because, of course, I'm just the opposite. Now I'm losing weight, what with all the crying I do. The amount of tears I shed must weight something. His clothes all hang on him. I did get him some pj type pants in a small, his waist is 30", down from 33-34 he maintained all his adult life. The not eating scared me a LOT last year, but I'm learning to live with that and I have with so much else. I read about "slinging boogers" on another thread. yuk.
How low can he go and still shuffle about? Just put Bob on scale after shower. He is 112-115 (won't or cant stand still on scale). I bought him some "lounge" pants size small and they fit really well and he was very happy with 'em cuz they are cammy colored. He has been shuffling around house lot lately and I have to watch closely as he don't seem to be too sure of footing and hangs onto whatever is close by. I'm amazed he isn't bedridden as his neuro (ex) said in June he is "severe" and other symptoms make me think early stage 7. I think I've been very "wicked" cause not getting much rest. lol
LeeLyle, my husband is 6'2" and dropped from 175 to 135 lbs within a few months, back in 2004 (before he was diagnosed). I was beside myself ... After the diagnosis in August 2005, he was put on namenda, then a cholinesterase inhibitor. I don't know if it was the meds, or that we managed to get rid (temporarily) of a couple of sources of serious stress, but he's back up to 172 lbs.
Anyway ... would your husband use a walker? I'd be worried about him falling and breaking something.