HI everyone, I wanted to wait until we all heard Nikki is ok...to post my update. Heal up Nikki, can't wait to hear from you.
Diagnosis Dec. 2010, stage 4.
Dado is really "moving on" He is now fully incontinent, pee issues every day he cannot hold it. And we have had two of the other issues too, as long as he is at home I can monitor when it is time for him to poop and catch it in time. However taking him anywhere is really getting tough, as many of you know.
Hard to believe just a couple of months ago that this was not an issue. I just wish I knew if it was really moving faster in him, than others, if the early onset does that. Now, he cannot find certain lightswitches, this is new, ALWAYS forgets that he has had his meal, and trips and comes close to falling quite often.
He has a strange new "giggle", almost like a way to make up for embarrassment. I always tell him, when he has incidents, IT IS NOT YOUR FAULT!!
No violence at least not yet, and he has forgotten my name only twice. Cannot EVER change stations on the tv without tripping it off. Of course he cannot shower properly that has been for awhile, and does not shave. He does brush his teeth but often forgets to rinse, and looks like a rabid dog when he emerges.
Horrid sisters from Maui have come and gone, God, what a relief that chapter is over. Big weight off my shoulders. It took about 10 seconds when they arrived, (saw him a year ago), to see that I was not LYING about his condition. They pried in my business asking about our money, and were rude as ever. However, they see how sick he is, and of course no offers of help now. I would not send him there anyway. Goodbye, good riddance, God bless. I did mention on another thread how he pooped his pants right in front of them , as awful as it was it was perfect timing thank you my darling.
I believe on the Fisher scale he is now on the upper 5th stage. And this week, is a better one, than those awful past few. Thanks thanks thanks for all your love.
hmmmm...I was just reading up a bit on the familial genes for early onset. It said that at least one direct family member had to have had AD, though it did not say they had to be young.
His Mom had it in her 70's, but the family denied it and blamed it on a fall she had taken and knocked out one eye. the WEIRD thing is....he is EXACTLY like she was in so many ways. EXACT symptoms. When he first was diagnosed I was SO MAD with him, as when I took care of her she was an absolute horror, mean, violent , nasty. I had great fear in the beginning, and disappointment and despair.
He is not those things, but the way he moves, fidgets, picks at things, and ugh the way he eats he looks just like she did. The not being able to sit in a chair without getting up briefly, then sitting down, then getting up to reach for an unseen object, then sitting down. Yesterday I was too late to catch him as he took a staggering walk/fall but lucky grabbed a chair before he went down. His walking is very compromised. NO NO NO his stupid sisters said it was arthritis. I just read an article on the alzheimers walk today.
Oh God I pray he does not turn mean like she did. However she was always mean.
As for his father, he died in 1955 at the age of 34 in a car accident., so we will never know if he would have developed AD.
Coco...I will have to go check the Fisher site again (love that that site for stages). It sounds to me like Dado is more in stage 6. My dh went into stage six and out so fast I couldn't believe it. The only thing my dh is NOT...is incontinent in stage six. He has now moved on to stage 7 (early stage 7). I do believe the ad is affecting his heart now or the other way around. His weight (nude) has gone from 140 to 129lbs. today in two months. He never weighed very much, but that is quiet a drop. He no longer knows how to get in bed. He just goes to the bed and stands there and I have to tell him and help him take off his clothes, sit him down and put his legs up on the bed. Then he becomes as stiff as a board and doesn't understand how to scoot up or down to get in the right position. He seems to be very unsteady on his feet also.
Also...he doesn't seem to know who I am when he wakes up....or where he is. DH doesn't know about where to look for light switches or most anything. He can only speak about 5 words that makes sense. When you hand him a tooth brush...he says "what is this?". My dh continues to sleep an avg. of 18 hours in a 24 hour period. Sunday he slept 20 hours. I do believe he just flew through stage 6....it was almost unreal. Sounds to me like your dh is moving fast also. It is like unreal...don't you think??
They don't all become mean. My husband never had one nasty moment in all the years we struggled with this ugly disease. Hope for the best. It's hard enough to cope with this, don't get too far ahead of yourself. Keep up your usual good humor, Coco. One day at a time, right?
man...I just read the stages again. He could be as far as 6D what with the incontinence, not being able to bathe properly, and never knowing the date etc. The last time he saw the neurologist the doc said he was in the "middle" stages....and also , the doctor seemed to kind of dismiss my comments on the decline I was noticing. however it has been a month since we saw him, and a lot has changed since then, including the incontinence.
Sad about your mate JudithKB. And yes, so fast. I still, think there are so many similarities between our guys.
Thanks Ocallie36 and Julia...yeah this week despite the changes I have been doing much better that the 3 weeks of deep depression. Not sure why...I know that getting that dumb family visit out of the way helped. I also have discovered that I need to keep my work life going, because, if I just stayed at home with him I would sink in to loneliness. It is a hard row my work, but when I get to town to the market each Saturday I have some nice people there that make me laugh, and seem to care more than many of my older friends, and family.
So today I take THIS DAY< cause I feel pretty good, despite changing, bathing, and diapering an adult. Working on a lot of art projects as I sold out last week, it is amazing how one can carry on and even create nicer things in the hardest times.
Hope you are not too sad Julia, you know you had to place your husband. I sure hope it all works out.
Coco, I wish I had some words of wisdom. My DH seems to be moving along faster now too. DX in Feb of 2010 at age 58. And I am working my last month at my job. Just a small paper route. Sorry to leave, but my DH and DD need me home. DD has been doing more that she should the last month and with me being home she can get back to a more normal life. She only has two more years of high school and the then she will be off on her own.
DD is the only reason I have not lost my mind. She keeps me going some days. DH is losing ground it seems day by day. I hate this.
I am glad you are out of your depression. And if you need to see the doctor, go and see him. I have my PCP on notice with my depression. He asks me every 6 mons if I am doing ok. And so far I say still holding my own. But one of these days I just may need a little something to take the edge off. Good to know that it is there if needed.
Glad you re-checked the stages. It sure sounded to me like stage 6. It is amazing how fast they can slide downhill. I think it might be the drugs they were taking early on that slowed the progress through the various stages and they are no longer working and they are now in "catch up mood" and there is no stopping the down hill slide progression. Yes, our dh's are so much a like in how they seem to be progressing. I try and have my dh go to the bathroom every two hours (if he is up at that time) and so far so good...but, I am prepared.
Just had another experience with the VA...The VA had ordered grab bars for my dh for the shower and where the toilet is and gal called and said bring your dh in tomorrow at 1:00 for him to get training and for me to pick up the bars....It made me so mad....I said...my dh is very ill and no way can I take him on a 45 min. trip and be at the VA for an hour or more and then drive him back for another 45 mins. And, I told her that he wouldn't remember any thing they said by the time he got to the door to leave....it is so stupid. This is why I have the love/hate relationship with them.
Sounds 6-ish to me too Coco. He is speedy. Jeff was slow as molasses, although once he tumbled headlong into stage 6 this year, he's picked up speed a bit. So sorry about the evil sisters. Jeff has great sibs, but there is one brother who I'm fairly certain has written us off now that Jeff is incompetent to listen to his story about how he was cold-heartedly swindled out of the family fortune (which no one else knows ever existed.) People are weird.
Coco, in less than a year my DH has gone from justmoving into 5 to the end of 6.The plunge has been so hard to deal with. He is continent but can not manage going too well and wets himself just enought to have to change clothes. Refuses to wear depends,had an allergic reacton to them a few mo. ago when we tried them.Also doesn't know how to get in bed or even find the bed or bathroom. I have to follow him allthe time,turn the water off, close the frig,close the doors ,turn off lights,list is endless. Dr. says he is in advanced AZ. ,start checking out facilities. She also says she worries more about me than him,but so far I haven't felt I need anything, but once in ahile the dog's Prozac is tempting.Please,Coco, if you need something to help you don't be afraid to take something.
Coco sorry to hear about Dado's changes- I sure know what the incontinence is like.Although since they have been able to keep the ammonia level down on Paul he is doing much better in most all respects.I do not know if they have ever checked Dado's ammonia level or not but it might be worth a blood test. Please try to keep your spirits up-we are with you!!!
blue I had forgotten somehow, that you are so young , and your dh 3 years younger that mine. I am so sorry you have to give up your little paper route, and I am so glad you have such a wonderful daughter. How hard for her in this time too.
emily the way you say things is so right on. Yes, people can be weird. Dealing with this disease process is a real mind bender, we can become bitter or better as they say, and wow how it makes one see the good and bad in people.
A little cute story on the word "weird"
When my sister Dianna was in the hospital last year, in her final stages of cancer, we were called down late one night as she was making a ruckus with the nurses. Her husband Frank and I rushed down there at 2 am, we could hear her yelling all the way from the elevator.
When we got to her room, she was having a fit about one of the nurses giving her a shot, that she really needed. Dianna had been getting delusional with the morphine in her. Anyway, she told me, that nurse is an alien, she is trying to kill me. I held her hand and told her I would not let anyone hurt her, and she could get the shot. She sheepishly agreed.
As the nurse was getting ready to inject her, she looked over at us, (just a cute little wee lady), and she must have been myopic", or really bad vision, because she had on these glasses that magnified her eyes like a hundred times, and she did indeed look like an alien.
Dianna quietly looked at me, still sheepish, as the shot was given and said a long drawn out...."weeeiirrdddd"
That word will never be the same to me again, and will always make me smile when I remember her.
Coco, thank you...I have trouble putting into words how I feel. I do feel sad at times, feeling guilty, think maybe I placed him too soon. I worry a lot, only to get a call today from the home saying he had a great day, they went to a concert, he laughed and had a fun time...I think at times I'm taking this placement harder than he is.
Love reading your posts...I will think of you now whenever I hear the word "weird"
coco--I may be wrong, but I think the middle stage includes 6. Steve's progression has always been slow; I've thought that it was easier on me that way. However, way back when he was angry and unhappy most of the time, I used to think that a more rapid progression might be a sort of blessing. But in the end, we just have to take it as it comes--one of the hardest parts of all of this, virtually no control.
Coco. so sorry to hear of Dear Dados rapid declining. but yes we see it often the early onset seems to move rather quickly compared to say what my DH's diagnosis is. his is vascular/combo AD and has moved VERY slowly. we are in our 12th year. your dado has slipped rather quickly sorry to hear this. the good news is you may qualify soon for hospice and that will be a great extra help. i think the others are spot on in that hes seems to be more into a stage 6ish stage now with all the evident signs of late. take one day at a time friend. its the only way to cope. divvi
Coco I am truly sorry for you that he is progressing so rapidly. Glad the doubting sisters saw what they did. Everyone always accusses us of exaggerating their condition. It is a good wake up call for them, Maybe Dado did poop his pants to show them a thing or two. I would like to think that he timed it that way. as Divvi said, one day at a time. one day at a time.
He has been trying so hard. He just walked in and was trying to tell me something, about the grasshopper, no not that, the basket, no no that, ...and then he looked at me and his eyes filled with tears and overflowed. I told him , oh honey it must be so hard to forget every time, and for the first time he said yes yes it is. I hugged and hugged him . oh how hard. Just when you think you are calm and handling things well, your heart gets crushed again.
Oh, Coco, I know this so well! Happens all the time here. Just can't find the right words and he gets so frustrated. At least he doesn't get angry or abusive! For that I am grateful. Yes, our hearts are crushed daily - hourly - minute by minute.
So sad....I know your heart is breaking. We all that have spouses in this stage have broken hearts daily. Hugs are good......it just blows my mind how both our spouses can go down so fast. I just can't get a handle on it. Keep us posted...and hugs, hugs, hugs.
Today I was able to look right in to his soul, and see the fear and sadness. I talked to him and said, "Hey do not worry! If you die before me, you will be with the angels and God and beloved ones, and you can eat all the ice cream and cookies you want, and no one will ever be mad" He like that.
The only other time I saw him cry was when I was snapping at him because he kept messing up the "clickers" and throwing the satellite off. Boy not now, I put in on a station and hide the clickers.
Vickie so far Dado does not get abusive, occasionally he will start to get angry but I have managed to head that off at the pass. I do believe that many do never get angry, though that can change when they really are forgetting who we are. I am not worried about it, not expecting it, but won't be surprised. I say now, that if anger and abuse comes, then I draw the line.
Divvi would be so proud of me, handling the poop situation, not gagging, and oh it was all over.. Just chuck em in the shower, get the hose and wash em down. Clean the toilet and floor before you even have time to think about it.
Tomorrow nurse comes for the day, from 5:30 am till 3:30 pm. Doing my market and looking forward to the sunrise drive to town, the fresh dragon fruit and mangos, and making a nice wad of cash.
yes yes! very proud of you coco! you did exactly right, just jumping in and tackling the issues as gaggy and nasty as it is. no time to think about it much. just remember they would be mortified if they know they are incontinent and we have to clean up for them. we want to try to make it the least stressful for them and us so the easier way is to get gloves on, lots of disinfectants, and just get after it without thinking!. once you get over the full blown walls/floors times you will actually feel you have made great strides. haha. i know i know not much of a grand accolade but hey! we all said poop was the line in the sand. isnt it good to know we can bend ourselves a bit further and get past that one now. ? to all of you out there having to work the cleanup duties my hats off to you - you will be the next group of folks that will be the encouragement to those who follow us. yes yes i am very proud of you all, and especially coco today!! ((COCO)) i guess i am the forever poop queen, i dont mind at all if it helps others who follow~~!
I almost wrote last night at 2 am, after drinking a few beers to deal with the situation at hand. Wanted to start a new thread to scream and then remembered this one. I also saw all the grief and pain and after reading about placement and Gerispyche and all, that cliff is looking better and better, ( just saying)
Came home from market , the Home caregiver said oh yes he did have a poop incident but I put the filth out in the bucket that I cleaned up with. She also said, I could not find his clothes. I think, she has a revulsion to the poop part. However this is not about her, she could have done better, but it is not about her.
I found his clothes all right, in our bedroom closet, poop everywhere, all over the walls, over clean clothes, it was runny and it just ran out as he put it in there. It smelled so so bad I could not believe she smelled it when she was here.
I am a very clean housekeeper and to smell my house like that was so horrible. Took all the filth out, hung it on the line and hosed it. The closet is going to be torn apart I did get all the mess out but the smell is lingering.
Not sure why he got this diareeah and I have been able to monitor him and get him to the toilet in time when I am home..It is also not about how to deal with poop. I don't think I need to know at this point. I had done my best, and don't know if I can go on.
While I was trying to wash my hands, having forgotten to put on gloves, the phone rang and it was people that I use their kitchen for my coconut, they signed a food permit for me that still had a year on it. They said that they want another $1000.00 for the second year, though, we had agreed to $1000.00 for the two years. Really what everyone does here, especially for such a small thing like I do, is get the permit signed, cook at home, and pay them out. It is common, sadly I should not have used them. I heard they have become druggies and so this is why I heard from them after a whole year.
I will not renew it. I am not going to find another source, it is simply too hard. Looks like I am going to lose my work, the bulk of it, and forgo my Farmers market that I have been a part of for 7 years. It is all to F#@@(( !! much anyway, I can barely hunt, husk, dig, cut , cook and package it all, that I used to have him help me with.
He is out there on the deck now, stumbling and shuffling around, and doing things over and over and over. Just really a zombie though he is not over drugged.
Ohhhh...Coco...I am so sorry. I was wondering why you didn't post anything last night. I was fearful your dh had gotten worse or something because you usually post after you get home.
Sorry I have no advise for you and you are just doing a great job with the poop situation and you don't deserve the helper not doing her part. You are much much braver then I ever could be.
Wish I had some great solution for you but I don't know... divvi might be on and help you out with some suggestions. And, your work situation is just another great pain in the butt. Just like last week and I found we were being audited by the State of Ca. I need gathering all that stuff together like I need a hole in the head At least might tax problem doesn't cause a loss in income and I know that is a real problem for you.
One suggestion, I just thought of, tell that helper to just throw his clothes out on the grass and hose them down....they just didn't walk into the clothes by them self.
So sorry Coco. Maybe he had hid the stuff when she was not paying attention and she made no attempt to find it all. Is this the helper from the VA? I would definitely report her.
thank you for adding to this thread. When people start an update it is nice to have the original all on the same thread - at least for me.
yeah, I did tell her about just throwing them out. I really think she could not even touch his clothes. I don't care, I really don't . I will continue to have her here until whatever the next phase is.
Here is the update on my dh today. This morning his pluse was 119....his blood pressur was OK. I called hospice and they said to call them back if it went over 120. Well...it didn't. He said he wanted to go to bed. I went in about every 45 mins. and did the finger thing I have that show oxygen and pluse. His pluse had dropped and that was good. I waited anothr 45 mins. and went back and his oxygen level was at 92. For the first time I had to put him on the oxygen.
Don't know if this is the result of the T!A he had Thursday evening or is it another blood clot or is he getting ready for a heart attack. My daughter and hubby are coming over to be with me and try to get me focused in the right direction. This is so difficult to not call 911...when everything is telling me that something is not good here. Hospice was very nice when I called and they said they were making notes of my call and to call me back if I thought I needed to that is why they are there.
OH Judith!!!! thanks for letting us know!! I saw your questions on dying and it just broke my heart. As you know I watched my sister die. Dear friend, if I can offer any comfort at all, is that when she passed, there was such a moment of beauty and peace I cannot describe. Please if you can, keep us informed, you are on my heart and in my prayers.
(your friend Patty, who is also 5"2 and 125 lbs..)
coco, yes its a real pita *pain in the a^^) when they hide their dirty clothes like this. i dont think its uncommon for them though. i would find dirty stuff in odd places as well - it would seem she wasnt paying a lot of attention if he had time to shed his clothes and make such a mess. she should keep him vigil at all times while under her care i would think. they can disappear just as fast as we well know. maybe get those large black trash bags and have her put all the dirty things in one and tie up and leave on the porch so the house doesnt smell. and i agree she just didnt want to deal with the dirty clothing. i am sorry to hear you have alot of cleanup to get done but yes it does happen. i know your business keeps you happy and occupied, i hope you can figure out the logistics on how to carry on with that. i would sit down with this caregiver and go over exactly what you think should be the course of care while you away. you know your DH antics best and she should take her cues from you on how to help you out the best possible way. make notes and the next time she comes hand her a list and have her follow it. like toilet breaks for DH, when he eats, what to do with soiled clothes, cleaning supplies, etc. she should clean up after him as well! hope you can work this out.
judith sorry to hear DH is failing as well so quickly. yes once hospice is on board they are your first line of defense in an emergency.
divvi I do all those things, I am so anal. His meals are laid out, specific instructions written up on everything, plus I talk to her. She knows, and I have left buckets with soapy water for her outside to just throw the things in. there is no way she did not smell what was in the closet, me thinks, she just could not deal with it. I will TELL her, that if she cannot simply put on gloves and throw it out there, then I will not have her come anymore. Funny yeah, just one little thing. I mean, this job is ideal for her, she needs the hours and she lives less than 2 miles away. Many of her other jobs take her on very long drives around the island.
I am going to call the Social Worker tomorrow just to discuss placement, down the road. It is getting so scary, he is stumbling, getting up in the night, has a very very vacant look, cannot talk more than a few works, is totally incontinent., cannot bathe without help, or dress right. This all in a couple month span.
My hair stands on end sometimes when I hear his voice.
As for my work, I am my Fathers daughter, I will survive.
Coco, I am so sorry you are having to put up with an incomptent person. I know exactly how you feel about your husband and how he has regressed, too bad some of us don't live close together...we could have the biggest pity party of all time. Hang in there with us and Dado and I hope the Social worker can help you. God Bless.
Coco...why don't you have the VA dr. recommend an evaluation by hospice and you might be able to get even more help. If he doesn't qualify for hospice then you will have the experience of knowing what they have to offer and they have a social worker that can help you decide what you might want to do.
Our dh's are both on this horrible down hill slide...each taking a different path. Your dh seems to be doing things that really cause you more work and heart break. Mine is easy to take care of except the worry and wonder what the next day will bring.
Thank you for your concern. His pulse is still going up high and then down low....the VA caregiver is here this morning and she is watching him. He was on his oxygen all night. Sleep was not good last night for me. He ate a little breakfast and right back to bed and still sleeping. He doesn't seem to feel real good and very unstable on his feet when he got up to eat.
I hope that Hospice nurse comes today. How is your darling one....let me know what you hear about the aid and what the powers have to say. I have already called and requested the full 24 hours a week 4 hours every morning Momday through Saturday until he gets stable or whatever.
thanks so much Judith , I was on my way out the door and wanted an update. Many warm wishes and thoughts from Hawaii, and a nice fragrant gardenia too.
Check back in later. A little update, someone with a certified kitchen has offered to sign my market permit and I can still cook at home. I feel like in a small way, my clean business sense and honesty and even my pride, paid off a bit. I should be happier, but today I am a bit whiny...
Coco...so glad about your good news with the certified kitchen. That was quick and I am glad it was because you certainly don't need another thing to bring you worry and grief.
My dh's pulse is still high but not as bad as yesterday. The good news is that I do believe putting him on this oxygen has helped his speech. This afternoon he could actually make sense with using more then three to six words. Someone had told me that if you give people with AD oxygen it can clear their brain a little bit and might make their speech and walking better. Don't remember who told me that and actually I thought they were a little off the wall with the commnet...but now I kind of think they might have been right.
You wrote, "it all seems so otherworldly". Yes, for me it certainly is that way. As I reflect on the last few years, I look back on not only some of the incidents with delusions and hygiene but look back on the entire experience and wonder if I really lived that life. Then too, something will prompt me to think about a vacation, or a gift, or just a conversation and dinner at home; the events of everyday life and I wonder if I really lived THAT life.
The emotional challenges of caring for someone with dementia are beyond exhausting. Because I had gone through the death of my best friend nine years ago I thought that would somehow make this easier but it hasn't. Or maybe it has but how would I be able to tell the difference?
In addition to dear Dado and the work situation there has also been the anniversary of Dianne's death? I read your posts, and JudithKB's and Jean21's and don't know what to say except that I care.
I am not sure how much longer I can do this. I had said, ..my line in the sand, was violence, or, when he truly did not know who I was anymore.
Now I don't know. I had virtually no sleep last night, the Seroquel is not keeping him asleep all night and the VA nurse did not seems to think it was a good idea to give him more yet.It is just pacing, fidgeting, "ghost" peeing, all day, all night. The 10 hours a week I am away from here is the only time, and I cannot sleep then.
When the nurse was here yesterday, I told her WHAT DO I DO when he is pacing incessantly, getting in to things, up and down and constant? She said , oh find things for him to do (?) Yeah, that works for a short while until he stops and goes back to his pacing. I know she is used to tears and fears and that is what she got from me yesterday. I thanked her for getting all the medical supplies sent and how much they helped. But I told her, I don't know how long I can do it.
She tells me stories of the little old couple that the old man is bed bound with Alzheimers, the wife has Hospice come in every day, and how well it works. MAYBE it is because I am 58, and don't feel like I should be home 24 hours a day waiting for him to die.
I may call the Social Worker today, she said to call anytime, (the VA worker) If he continues to spiral down so fast like this, I simply cannot take it. HIs messes in his new shorts I bought him last week were so bad no amount of soaking bleaching washing twice cleaned them, I had to throw them out.
Sick of it already, just sick of it. Most of the time my love for him covers it all, but it is wearing thin.
edit..I just read in another post how one can take care of their mate because it is their life long love. Dado and I have been together for only 11 years, so maybe that is why I am ....?
I think the love is most important, but support and helping friends can make a difference. And not having to work so we can keep this house.
The job of all those social worker/nursing home/ALF types is to help keep things going. One thing to do and I'm sorry but I haven't noticed if you've already talked about this - is know your paths and options before you need them if you can.
I found out I was not entitled to any assistance financially from the government, what the process was and who's approvals I needed, and most importantly for me how long it was likely to take from the day I screamed "NOW!" to the day she was in a home.
Once I went through this in detail and understood that I would be waiting about a year for an opening, I also learned I could scream caregiver burnout and they would take her within days (but not to the place of my choosing immediately).
I'm telling you this because I understood that I had to try and guess where I would cross that line where I couldn't do it anymore and then work backwards to how long the process took.
My worst nightmare was that I would actually be burned out and now had to go another year. When you know what process you will face and what is involved, only then in my mind can you understand your timeframes.
Along the way I heard so many different versions it was almost funny. Everybody had a somewhat different opinion. Until it became clear who the real decider was (CCAC case manager in my world) and if I had listened to anyone else I would not have known the facts.
When the time came, it happened just like she said. Dianne is eating, not in pain, and 105 years old now. Thanks Coco for asking about her.
Coco....I personally don't think it is about life long relationship so to speak for some. I think it is more about age. When you have a spouse that is in their late 70s to 90s....you kind of expect them to be ill and maybe even bed ridden But, when you dh is only 65 like our dhs are...it maybe is just a little harder to accept that a person that age could be so ill and especially with AD. This shouldn't be happening...no cure, strange experiences of behavior we never even thought of let alone would experience. And, even though they are gravely ill by most standards they just don't look "old".
About Dado behavior...do you have ativan? That really calmed my dh down when he was doing the wandering around. The minute I would see him starting to bite his finger nails I knew what would be next...and I gave him just a 1/2 of the little pill and it seemed to calm him down and basically he has not done much wandering and unappropriate behavior. Of course...he is the "sleeper" of the clan so to speak. And, some of the nurses that say things like..."find him something to do"...don't you just want to scream...that is like finding a 2 year old something to do. Maybe they can or will do it for 10 mins...but, it is more fun to be throwing something in the toilet bowl...or somthing to create more work or more tension to our lives.
Like yesterday when the hospice nurse came and I commented about my dh's pulse going up to 118 when he had been doing nothing but sleeping...and she said..."Not to worry"...well...I snapped back at her and told her...."It does worry me...I don't see this kind of thing everyday like you do and it is my dh...it scared me to death". She got very nice after that...and said..."Of course that frightened you"
When I take him off the oxygen now within an hour his oxygen level drops to 90....which is very low.. the nurse said to call her when it gets below 90.
Wolf, I wish I could reach out and give you a giant hug, for telling me what you said about Diane mainly. I am betting SHE says she is 105...Dado insists he is 74, not 63, and gets quite irate when I tell him otherwise. In his case , me thinks, deep down he needs to be older to explain his condition.
I am scared of placing him, I have checked all these things Wolf. There is even a person that walked me through the Medicaid process and told me how we 100% qualify. He is for hire.He says he can have him placed within a month, and that, their criteria is simply caregiver burnout, the one you were talking about.
The Social Worker on the other hand has mentioned to me about the nice VA facility in Hilo, and when the time comes.. she will help me with the process. This of course will take longer.
I mean, the only way I can see to survive this HERE, is to drug him more, so he sleeps and I can too. The daytime stuff I will try to deal with, without revving up the drugs. And I read and read and read what others go through here. And, I really think, they are of course each unique, AND MY GUY IS REALLY A MESS TOO, yes he still knows me, but that is about it. He has totally lost the knowledge of when he has to go to the bathroom, and if I am not vigilant every moment...like yesterday, peeing right at the door to the house as he could not make it.
SO it is 24 hours. Oh God I just don't know what to do.I did call the Social Worker to call me later to just talk.
Maybe, even if I did not have to work , I would still be just as frazzled. All I know, is I DO HAVE TO WORK< and I am losing customers because I cannot fill their orders, and they don't get it. How can they?