I never thought about putting Andrea at the door at Halloween...it would work. I know her appearance scares the hell out of me!!
She got down to 73 pounds, and has stayed there. She eats three meals a day, and I feed her fruit. And the NH gives her snacks. She ate THREE waffles this morning. Why is she not gaining? I don't know.
The thing that I'm seeing now is a really weird "drawing up of the limbs". What is this? She tries to keep her limbs all drawn up. I guess it's the fetal position thing. Does anyone else know what this signifies?
Trisinger, Lynn eats very well too yet still loses weight. His doctor finally told me something I could accept. He said as we all know Alzheimer's destroys brain cells... the part of his brain that controls metabolism is now destroyed as well, so his body just doesn't know how to properly use food any more. Its heart breaking.
As for the “drawing up” of the limbs, My grams did this as well, so I know just what you mean. She didn’t have AD, I am not sure what causes this.
Trisinger, the drawing up of the limbs is what they call "contractions". My husband was severely contracted for a long time and it made it difficult to change his hospital gown and to keep his hands clean because they were drawn up into fists and he also had his elbows bent...his hands were tucked under his chin. You can work with her to prevent some of this...ask the staff at the NH about range of motion exercises. Once the muscles are contracted they are frozen in place and trying to move them causes pain. Good luck...
Yep, but it sounds worse than it was....he seemed pretty comfortable and he didn't exhibit any signs that he was in pain. He didn't enjoy being moved around....and protested as well as he could when his "girls" came to give him a bath....LOL! He did have a morphine patch that I changed every 72 hours for years....this took care of any pain from the contractions or anything else that would hurt from being in the condition he was in.
Nothing about this disease is pretty or easy, is it?
Sunshyne, I haven't tried a walker but what can it hurt. I'll go for that and let you know. His PCP said his body is shutting down like nikki explaned.
trisinger, in descriptions of stages, stage 7 mentions muscle stiffening. Bob hasn't done that, yet.
I sometimes think I'm in a never ending nightmare and then I come to this site and life is not all bad. Thank you all...
I think not knowing what is going to happen next is the never ending nightmare, because you also have no idea if what to do about it, or not to do about it.
That is why this site is God sent. Sometimes what you do about it is call the doctor and there is medication. Sometimes what you do is nothing, because what is going on, no matter how odd it looks, is actually to be expected. Knowing the difference is the most important thing you can do.
Sandi (or anyone who kept a LO when they were bedridden and nonresponsive), I feel like a real heel for asking, but I can't help it. I can't get a real life answer without asking.
I know you kept your LO at home during the bedridden years. I am considering it, bringing her home.
So, if you don't mind me asking....
If you had to do it all over again (finances not an issue), would you have still kept him home, or let a NH take care of him during this time? Is it really awful and depressing to have your spouse passing away in the next room, or more comforting to know where and how he is? How often did you change diapers and bathe him? How did you feed him?
thanks...feel free to tell me to jump off a cliff if this is too painful...
Trisinger, I have no answers I just wanted to reply to let you know someone was here if you needed to talk. I am sure Sandi wont tell you to jump off a cliff! She has been wonderful sharing her experience with us. I have a question if you dont mind.... if you bring Andrea home, will you be able to have in home nurses to help you? This board is like a small community, we care... Thinking of you and your family
Nikki, thanks for the compliments....I hope I can help someone on this journey.
Trisinger, I would do it all over again. I was a real hands on caregiver and since I didn't work I spent lots of time at his AD facility caring for him and spending lots of time with the other more "with it" residents. It finally dawned on me I could do this at home and have a lot more free time and money..
To me it was less depressing to have him at home...to me it just felt right. I changed his diaper (a pad actually since he didn't get up and walk) whenever he needed it. There was no set schedule. Whenever I walked past his room or went in for some reason I would check to see if it was time for a change. I learned to roll him on his side and clean and change him with no problem. I would clean him up every morning....wash his face and hands, brush his teeth every morning....some days I would shave him and some days not....I had help to get him out of bed and into the shower once or twice a week...the rest of the time I gave him bed baths as needed. I got competent enough to change the bed linens with him in the bed...not easy that's for sure but I did it.
He was always ready to eat so I would just put the head of his hospital bed up and feed him whatever I was cooking for the day. I gave him breakfast, lunch and dinner every day, drinks a couple of other times and a snack before bed. Truly, it was so very much like caring for a baby.
For me, it was not a big deal....for others it wouldn't be doable at all.....but, I always knew that if I couldn't do it there was always another option. I am glad I did it....I learned a lot about myself and gained a whole lot of knowledge....
By the way, I would never have you jumping off a cliff.....
Sandi - I'm really glad that the ? was asked, and so grateful for your information. I have thought about this for a long long time & I feel like I too will prob care for my husband at the house. It amazes me at what you were able to accomplish...thank you again for sharing...wow...
I have a husband coming to this stage before long and I would keep him home if I could possible manage. I have spent days and nights in hospital staying with my Mom and it just literaly wears me out and also the daughters. My Mom was 93 when she passed this May and she was home all the way. Money aside, why give the NH some much money if I can hire help at home and it is much, much easier on everyone else.
That said, is Hospice an option for you? If you haven't checked already, I would. Different Hospice have different criteria. The Hospice I had were absolutely wonderful. They came for 6 months and started while she was still on her walker. I had the Hospice come 5 days a week to shower and later bathe her. They will come 7 if you just ask. They change the bed, dress them shave them, brush their teeth, do the hair and etc. I never had her feed Mom but maybe they would. She even put the bed clothes in the washing machine. She was never here more than an hour unless she visited with me over juice, coffee, etc, which was frequently. During the final days (which was about 6 weeks) they installed a cathater so I didn't have to do diaper changing unless the cathater leaked. My Mom had a colostomy so poop in the diaper was not an issue. Now, I don't know if I would be strong enough to roll her over and clean up a poop mess and that would be a BIG issue with husband because of weight. The Nurse came twice a week to check on her. I posted somewhere else to briegull that my Hospice aide also had private patients she did baths for at $10.00 an hour, if Hospice doesn't accept her. Mom never knew she was in the Hospice program. I just refered to them as helpers and nurses. After she was bed-bound Hospice sent out a special mattress to help prevent bed sores. That gets to be an issue when they are bed-bound. Hospice re-certifies them every 3 months or so and as long as they are in a decline they will usually keep them on.
lmohr, I will have the same problem if Mac becomes bedridden. He is 5.10 and weighs 160lbs right now, I am 4.10 and weigh 92lbs. There is no way I could turn him over to clean him or change the sheets etc. So it would either have to be an ALF or NH or get private help.
lmohr, I did have hospice the last two weeks he was alive but I already had all the equipment so all they provided was his morphine patches and an aide that came twice a week. I could have had more services but I didn't need anything else. He was under hospice care for 18 months at one point when he was still in the AD facility....he graduated....! They are a great group of people.
As far as rolling them...you can have a nurse show you how to do it and you won't hurt yourself. It involves putting the hospital bed at the right height and using your legs as a lever instead of your back. I never had a problem....
I hope you are all able to care for your spouses in the way that you feel is best. It is never easy no matter which choice we make.....
I was going to say the same thing sandi, about rolling them. My step sister is a nurse, in a nursing home.. she is all of 4' 6" and maybe a hundred pounds soaking wet. I have seen her roll a 250 pound person all by her self!! It can be done, and as sandi said I am sure hospice, or medicaid nurses etc would teach us how to do it as efficiently as they do.
When I was in the hospital, basically dying from pneumonia, and they brought me up from Emergency to my own room, they needed to move me onto my bed. I couldn't help. It took 3 of them but they did it without hurting themselves. There are ways to do this stuff. You just need to learn how.
I've already decided to keep Bob at home. He is early stage 7. Sandi, I'm so glad to know you would do it again knowing what you know now. So many have asked why I' didn't put him in a NH. I feel so much better with him here even tho he, or should I say AD, is a pain in a--. He isn't bedridden yet, after reading bigtreemurphy's description of how to change beds, draw sheets, etc., I decided I can do that. Bob is 6'1" and 115#'s. All bons, no brawn anymore. He's already in hospice and they have offered so many services, but I haven't felt I needed to use them yet. I won't hesitate when the time comes. I was so nervous just this morning. I had a volunteer come and stay with him while I went and took care of some business & grocery shopping. She had told me, she had stayed with a patient who wasn't bedridden, but (God bless her) she was willing to give it a try. Everything went well. I was afraid he might go in our bedroom and come out half naked, He did that the other day, when a male friend of his was here visiting. I told the friend, the show was for him, cuz I had seen it before. Anyway trisinger, its a tough decision and I hope our (joang's weirdo friends) input helps you to somehow come to the right one for you..
I didn't know they could walk in stage 7. I can't figure mine out. He still walks, but not well. Is continent and I am figuring 5 with some 6. One minute he talkes nonsense, thinks someone is here when they aren't, asks about something he has evidently dreamed about, apethetic, and an hour later I think I am losing MY mind because he acts almost normal. But, nobody mistakes that he had dementia/alzheimers. What did Hospice require to enroll him? I am not ready yet but getting prepared.
I feel bad because I don't feel bad. I coped with years of rages and very bad behavior. Several admits to psych units because husband couldn't be controlled in any way. Lashed out at other patients and staff. He is finally in an excellent dementia facility. At this stage he is like a 2 year old. Seems content when he is awake. Gets a decent amout of mental stim with the aides and activity directer. He hasn't known me even as a person who might mean something to him for a long time. Now that he is mellow and drugs have been reduced at my request I could probably care for him at home. I don't want to. I finally have a life. I can go out with friends and to my temple without being afraid of what he will do next. People around my community are starting to forget his yelling and screaming. This isn't the retirement we had planned for-but what we have. I want at least part of my life. I can't believe how difficult this has been to put in words.
bluedaze, I fully understand. I don't know what I will do when the time comes, but I know that violence would have been the deal breaker for me. We all need to do what we can do, and what is right, not just for our LO, but also for ourselves.
I wouldn't call it walking. He shuffles about hanging onto whatever is near. I usually tag around with him. I don't think this will go on much longer. I'm surprized he can walk at all with all the weight loss. He is in early 7, so he has a lot of stage 6 symptoms hanging on. He cannot say more than 2 words I can understand. One is "no" and the other is "huh?". He mumbles groups of something. I hazard guesses and finally he shakes his head yes or says NO. His PCP of 25 or so years is head of the Hospice he is in and so he wasn't evaluated or whatever is usually done. I notified his Dr. when I finally faced facts and Dr. took care of rest. He is incontent some of the time. Other times I lead him to bathroom and tell him to go there>>then help him do so. I know he has to go cause he holds himself like a toddler. lmhor it sounds like you are right on with your LO. It is so hard to tell cuz nothing is defined except he definitely has AD. It is so frustrating and I too feel sometimes like he has passed it on to me. Is AD communicable???
This was so interesting. Sandi, thank you so much for sharing. I've pretty much made up my mind to keep DH at home as long as I can possibly do it. If I could get some aide to help out w/the heavier things, it's doable. Ever if he became bedridden, I could have a hospital bed downstairs where all the action is that way he wouldn't be isolated. At this time I think he's in stage 5+. Most of the time he's in good condition. Occasionally he's not. Today is a very good day for him. I am very grateful and we're taking one day at a time. Thanks, again, all of you.
Bleudaze, I know exactly where you are coming from. I went thru the terrible times with my husband...his antics in public places are the stuff that legends are made of. I could go to Vegas and do a comedy routine that would have people in stitches. He was so medicated at some points that he was barely moving, but otherwise he would have struck out and hurt people. He was placed in a wonderful facility and I truly thought he would die there. But, when he became much like an infant, I surprised myself and everyone else who knows me when I announced I was bringing him home. I am not caregiver material....I was a spoiled princess...this was totally out of character for me. But, I just felt it was the right thing for me...just as you feel you are doing what is right for you.
If you have a LO in stage 5, he or she will have ALL of the stage 4 symptoms in addition to SOME of the stage 5 symptoms.
Same thing for stages 6 and 7. They should have ALL of the symptoms of the previous stage and some of the ones from their current stage.
Take clothes for example. They will go from not knowing what kind of clothes to put on, to being unable to put clothes on by themselves, but they won't suddenly understand that in the Winter they need long sleeves, but in the Summer short sleeves are best just because they have hit a symptom of a similar kind that belongs to a later stage.
I wholeheartedly agree violence would be the clencher for NH if there was fear for safety issues. in my case, though, i am also going to try to get inhome help private individual 5xwk when necessary and a hospital bed for living room etc and have DH stay with me til the end. i think he would appreciate that last gesture on my part, knowing how hard of a sacrifice its been to keep his care up all these yrs. if they become bedridden and cant to anything but lay there, i think the really hard part would be done. having an aide to help at that point plus hospice if possible is the way i want to go. but then we with AD we can never say never as we well know. Starling that may well be a very good way to stage them. makes sense. divvi
divvi that is my plan as well, right down to the hospital bed in the living room. I already bought a sectional couch with a pull out bed , it will sleep 5 comfortably- for me and any family that wants to sleep in there with him
As for the stages, I guess that would only work if everyone with AD was the same and had all the symptoms of each stage.. but they don't as we know. You know, now that his weight loss is getting so severe, stages no longer matter to me. Odd, as before.. and even just a few months ago I was all about what stage he was in and what could happen next. I guess once you reach the later stages, and can see the decline.. like drastic weight loss - well, you know what will eventually come. I am in no hurry for it!
I've never been excited about staging-assigning a number to symptoms might help anticipate what's coming. You still have to work with what you have instead of worrying about what might never happen. As a nurse who cared for too many cancer patients I saw no value to going through the stages of acceptance of impending death. We are individuals not statistics. When I received my cancer diagnosis I at first was very angry=then through away the books and went on to enjoy life on my terms.
I agree that some of our LOs will not progress through the stages evenly, especially if they don't have Alzheimer's as their primary dementia cause.
My husband, who has an event driven form of Vascular Dementia, is a great example of that. He needs his clothes put out, but can go out walking every day for an hour or two and come home. He can't remember the words for the mail, the newspapers and the garbage which makes for interesting conversations as I try to figure out which one he is trying to ask me about. And he does the walk 20 feet behind me in a store (and that is getting worse), but yesterday he figured out how to fix the toilet seat.
He fixed the to toilet seat, and found the hidden screws, but didn't know what it was called, and couldn't remember where he kept HIS screwdrivers. Very uneven. Literally all over the place.
I also think books help, but only so much, and only if you find the right book at the right time in your particular journey.
trisinger, you have been on my mind these past few days. I find myself thinking of you and Andrea more and more as Lynn keeps losing weight. So heartbreaking, and a stage I am not sure I will be able to handle. Not doing so well at the present.
Have you come to any sort of decision about bringing Andrea home? My heart goes out to you and your children, so difficult. I just wanted to let you know I was thinking of you and hoping all is well... as well as it can be.......... ~Nikki
No, no decisions. It was just something that was rolling around. I guess it was when one of the posts (a long time ago and then again now) said that they are like taking care of a baby. I thought, well, I could do that. Just watching over someone in a bed, I can do that. But I can't do any lifting or anything, although I already have Hospice for her. I don't want her to die in a NH, but then again, she's not really in a NH. It's the personal care home, whatever you call it, so she's in a house and home atmosphere. When her time comes, I want to be able to be with her, and would I be able to stay with her 24/7 at her home? Of course, I feel bad that I don't want to go past a room in my house and always think, "that's where Andrea died." It's so selfish...
I think I need to think about if I am taking her out for her or for me. Taking her out won't bring her back to where she was when she went in. And the 24-7 just about killed me once.
Nope, just thinking out loud. And you guys are so great to think around. thanks
Hank died at home, but of course, it was so short a time. Trisinger - I never think about sleeping in the same bed where my DH died. I feel connected to him more because he did die here, though everyone is different. Your DW weighs so little it seems it would be easier for you than for the women who have heavier husbands. Whatever, you need to do what seems right for you. I'm pretty sure if death is expected they let you stay with your beloved where ever they are placed.
trisinger, I think you've answered your own questions. You'd be taking her out for you - but really, it's what you perceive you SHOULD want, to have her die at home, when you know it probably would distress you more if you did. I'm sure they'll let you stay with her, they've sounded supportive.
trisinger, it has to be your decision as to what is best for you. I have no idea how I will feel when the time comes. I'm still optimistic enough that I hope he just stops breathing in his sleep before needing the nursing home and going through those final stages. I have not yet arrived at where you are, but I'm grateful to you for sharing your thoughts with us.
Trisinger, I agree this decision has to be about you. In this one instance, you have every "right" to be selfish. It is YOU who will have to carry on, therefore, it should be what make you feel the most comfortable.
I "plan" to keep Lynn home, but I wont truly KNOW what I will do when faced with it. I might chicken out and send him to a hospice house, or the hospital. I have watched those I love die in all 3 places. Home was right for some, others couldn't deal with it... there is no right and wrong. It is what is best for each person going through this difficult time.
I too appreciate your sharing, I can only imagine how hard it must be for you. Keeping you and your family in my thoughts and prayers ~Nikki
Fran, I think of you often.... your words brought tears to my eyes. So beautiful!
LeeLyle, I have been thinking of you and wondering how Bob is doing. This part of Alzheimer's I am not dealing with well at all. I find I am crying and I can't seem to stop. Lynn is "only" in stage 6, he can still walk "ok" still talk , but the weight keeps coming off. I didn't think this was suppose to happen till late stage 7.
He weighed 119 fully dressed at last weigh in. I haven't weighed him at home as I just don't want to know. I see him when I help him dress and bathe and I can't help it, I just start bawling. Me heart goes out to all of you going through this. It is just ripping me apart.
Nikki, now you have company crying. I was watching him last night & just started sobbing. He still isn't eating but 3-400 calories a day and still manages to shuffle about. He has a rattle in his breathing & hospice nurse got him a round of anti-biotics, 7 pills, he took 1 a day for week. He sounded much better4-5 days and is now worse. He is sleeping ok, even at night in a lying position. He has slept all day today and I have checked to see if he is breathing, cause the rattle has stopped, calling Dr 1st thing in am. I didn't think he would be still walking now either. He still sleeps in our bed (king). I will get a hospital bed in living room when he cant walk. And thin! I finally weighed him when we had a shower. 112-115# (more crying) I'm not handling this well either. Actually I haven't "handled" any of this well. You express yourself so well, and the encouragement you give others is so well put. I apply it all to myself and I thank you so very much. I just don't know how, or am so tearful, when I read some of the comments, I can't respond. Thank you again for puting into words what I find myself unable to do. Hang in there. We can get through this together..luv
Well LeeLyle, I was certainly crying hard while reading your post. It is a comfort somehow to Know I am not alone…. My poor little niece came in to see what was the matter. It is hard having two children in the house, I try to keep as much as I can from them, but sometimes... I can't hold the grief in.
Unlike your poor Bob, Lynn eats very well... and yet still loses weight. I went through a stage where I couldn't or wouldn't accept what was happening and tried to fight this with all I have. Yet nothing would stop the weight loss. It was then I called my neuro and DEMANDED he make it stop NOW! He was so good to me, letting me cry rant and scream at him. Then he told me what I already knew.
It is just too soon, these things should not be happening yet. He still has quality of life and I could just scream for the injustice of it all. I have been reading about trisinger’s poor wife since I joined here, so I guess they can go on like this for a long time. If I can find the strength I may ask his VA doctor at his next appt.
LeeLyle, my heart is just breaking for you.... this is just so damn hard! I can only imagine how difficult it must be for you to watch him daily decline. I am so relieved to hear you have hospice and hope you are letting them help YOU - so you can try to find some rest and comfort in this madness. Lord give us strength!! Thinking of you, much love ~Nikki
It must be the weekend for breakdowns round here. Me too, yesterday just sobbing at the drop of a hat. songs that play or passing a foto framed from a ski trip to europe, the one that really gets me, is the one we have in the gondola all smiles under the bridge of 'sighs in Venice'--now isnt THAT appropriate??'sighs?? it had a good meaning then. at the time i was just so happy and DH was smiling and looking so good. that was only 5yrs ago. My DH too is just bone think regardless of all the calories i forcefeed him. nothing helps. his headd is starting to look big for his body. he wont get on a scale anymore here or at the dr office. he is afraid so i have to eyeball it but i say hes around 130ish, maybe..seems like more of us are in a very similiar journey timewise. my DH still talks walks eats by himself, but he too i can sometimes hear a slight rattle while sleeping..maybe the food is a bit aspirated at times..We are in the boat together and no matter how much we bail , we are slowly sinking. (((HUGS)))) to everyone who is in weepy mode too. i feel a bit better today..divvi
Can I join this party? I feel a change nearly daily..then say, I'm just imagining it, but G will ask me AGAIN what day it is and how to do this or that. His scarfing down a ton of calories and actually gained three pounds last week...he was so proud of it. Must be all that Ensure and Chocolate chippers our daughter makes him, but even with that,he is bone thin..looks like a scarecrow. He has started (after a couple of years) to want hugs and "body presses" again...that's when the tears hit me.
We leave for Sun River tomorrow, and I am determined it will be a happy time...it is a destination resort on Central Oregon..old friends joining us for a meal or two..Positive thoughts must prevail.
I wish each of you a better day tomorrow. I read your posts and I am so sorry for what you are going through. I can't begin to imagine how you keep on keeping on. I just hope and pray that when and if Mac goes through the stages I have as much fortitude and strength that all you ladies have. You are in my prayers.
Andrea ate her breakfast waffle yesterday. And then she ate another. And after that they looked over and she was eating the waffle of the person next to her! Remember, she's the one who used to eat the grandson's food instead of hers!
But still, 76 pounds. It seems so wrong. She doesn't like to walk much, kind of waits to be carried. I think it hurts to stretch out her limbs now.
But today she kissed me good bye, and 'honk honk'ed my nose when I left!
divvi, keep track of that rattle. i'm scared Bob might get pneumonia. His resistence is so low. Tsinger, savor that kiss. Its been at least 6-8 months since Bob initiated a kiss. Sometime when I kiss him, he look at me like "what are you doing to me" I don't want to be young again, just wish he had a memory among other things.
Kathi, How great is that? Body presses, I mean. Have a good trip, Its good that you both can travel. Enjoy!
The suns out today and I haven't broke down. yet.......
kathy37 - I assume you are going to The Trout House in Sunriver. I love that place and spent quite a bit of time with SIL and DIL when they had a home there. We took a canoe down the Deschutes, so I'll be there in spirit with you! Now I understand the weight loss really comes at the end of AD for most folks. In the last month antibiotics were administered three seperate times. Then I realized those can be refused if you want the dying process to move forward. I wish I had been aware of that at the time - though any of you may have other feelings about this. For me, I considered Hank's quality of life was 1% and then at the end I figured it was zero. Even though, it is still a shock how fast he went from maybe early stage 5 to dying. As much as I still miss Hank and wish he were with me, I KNOW he couldn't be here as a whole person. From that standpoint I am happy for him that he no longer has to suffer. I can't say that every day gets better, but I am doing what I enjoy and grieving when that comes to the surface. Today I visited a neighbor of ours from when we lived in Astoria. She is 92 and I sat at her kitchen table in the chair Hank used those many times he went over to talk about a book, or community events, or religion or politics with Hope. We both turned teary-eyed over that one. Sunshyne - If you read this I want you to know I am taking the train to San Diego in November and would love to meet you. My email is here, so contact me if you'd like.
Wow, I am in shock. sept 7 i posted i thought the loss in weight was severe in my DH and guessed him in the 130 range because he would NOT get on any scale mine or the drs. well low and behold he just got on my scale and hes weighing in 168lbs fully dressed with houseslippers. holymoly, i either i am feeding him round the clock and hes finally absorbing it, or i have a super bad eye at guessing...gosh, the dr will be thrilled. divvi and i am asking today, 'why is he NOW getting on the scale --hummm..it couldnt be the new coconut oil, now????