He is falling down constantly now, and I just hurt myself as I was catching him yet again. I am sure it has something to do with the drugs, but he was falling before. And I cannot take him off the seroquel.
I have left messages with doctors and nurses and hope for a return call. I just don't know what to do. He will not lay in bed all the time so it will happen again. This is nuts so freaking nuts and I am at a loss.
Just to let you know because I know I will get good advice and comfort. This cannot be real. What can be done? Does he need to be in a hospital??
Coco, I have no answers for you, but please, please, do not try to catch him! I have learned to just let DH go when he starts to fall. I do try to get behind his head so it won't hit the floor, but there's no way I could catch him without killing myself. He's 6'2, 204 lb; I'm 5'3, 100 lbs. No contest. Just don't hurt yourself.
Coco, this is all so dreadful for you both. I do hope that you will have some answers soon. Hospital may even be one of them as it sounds like there is a physical problem as well as the dementia. Often there is Parkinsons disease or ALS in the mix and the crying and giggling is reminding me of my DH (ALS with FTD). Keep ringing for help Coco, stay strong.
Coco, the only suggestion I have is to get some ativan as soon as you can. You may need the dr. to order a wheel chair for him and insist that he will have to use it. Sometimes they don't want to use a walker or a wheel chair, but you may have to be very stern about it and let him know that if you hurt yourself you will not be able to care for him. The problem you might have even with a walker and/or wheel chair they forget to use it and just begin walking so it takes constant watching them. How my heart goes out to you.
Wish I had some thing better to tell you about this, but as you already know you can't afford to get hurt. He wouldn't be able to help you at all. Looking for my magic wand so I could use it on your problem, but I have missed placed it. Please try and keep us posted we all will be worried about you and your dh.
Next time he falls, do not try to catch him or pick him up, call 911 & let the EMT's do it and, hopefully, take him to a facility. You are in danger, he is in danger. You're right, it is 'nuts' and you have neither the training nor strength to take care of him at this point. I can't know if meds will or will not help, it sounds beyond that. He needs to be with professionals. I'm sorry, really, but that's the only advice I have.
Coco---If he should fall again, let it ha[ppen. Catching him or trying to coulld geteitherr or both of you hurt. If he's down, assess him for injuries, call forhelp (911 or Plice), andrencourage him to staydown. Ghere are too many variables as to why. He needs medical assessment.
Sorry to say, been there, done it. This is a time to pull up those big girl panties and stand tough. Get help there now. forget waiting for Dr.callbacks. Yoyu know your DH and you know he needs help, now. Make it happen.
Coco...I'm thinking he may need to go to hospital to be properly assessed, and find out why he's falling so much. Don't try to catch him as he falls, you'll only end up needing help yourself then.. Take care ...we worry about you.
i would also suggest his dr may want to admit him for a hospital evaluation. if the seroquel is causing it there may be another choice of meds that can work equally as well without this falling issue. if it is due to the meds. he may have his prostate infection back? once they get these like my DH has the infection here really never clears up but sustains bacteria count til the next time its enough to cause infection. also maybe talk to your care manager and maybe its time for a railed hospital bed so he can stay safe while in bed. coco sounds like you need to seriously discuss his care issues now if you are not able to care for him much longer at home. sorry to be so blunt but unfortunately i hardly ever sugarcoat. because i want folks to to the same for me. if hes progressed to a point where balance and equilibrium has been compromised you may need to think about placement even though it brings so much stress. sorry dear friend. i know you are desperate not wanting to think about all this but your plea for help is what we do here. offer suggestions and hope you find recourse. if all else fails take him to the ER and let the admitting dr get with his regular dr to address his meds and your concerns. divvi
Hi Coco, Just in case you didn't already know Seroquel can cause a drop in blood pressure when going from a sitting or lying-down position to standing (known medically as orthostatic hypotension). This can cause a person to have lightheadedness or dizziness, or to faint. Many people on Seroquel that don't have Alzs complain about this hard side effect. If I were you I would google orthostatic hypotension and learn how it is managed with persons with Alzs. My son was on Seroquel for a brain disorder and fell even when he was a strong 18 year old. DS has been on antipsychotic medications for 12 years now and we are so happy to have medications that help him be well and so scared about the hard side effects that could seriously harm him. I heard a simple tip the other day that I used and it helped me....think often about the word "Both". Seroquel is "both" good and bad and thats OK..everything with brain disorders are "Both" and as caretakers we have to breathe deeply through the multiple ambivalent issues. I hope it helps you too tonight. Peace TD
It is very good to be reminded of the BIG GIRL PANTIES> sometimes I forget about them. I tell you the truth, I almost always have them on. The times I feel like I don't, is when I hurt for him, it is almost unbearable when we do , isn't it? Last night in bed, whenever I felt like I was going to break into emotional pain, I felt the need to HARDEN myself, and I did. I guess this is a form of the panties.
I did not take him to the hospital today, but have made a decision if this keeps up, I want him for a re evaluation and will just take him. Carosi2*, you are right about the doctors, and they only know so much. I spend quite some time on the phone with the lady Geriatrician from Honolulu, and the more I talk to her, the more I see that in some ways, they just don't get it. SHE is not taking care of an alzheimer patient at home. She keeps trying to convince that he is in the best place here, and that even if I had him in a facility he could fall there. She said I just have to let him fall, it is the course, and to try a bit of a med adjustment with seroquel later in the day instead of the morning.
I have felt that he has had very parkinson like symptoms as he legs shake and get stuck all the time. The neurologist poo poos me whenever I mention his physical symptoms maybe be that, or Lewy Body, or SOMETHING!!! cassie* I do appreciate how you pointed out about the giggling and the other symptoms, he did that again today when he could not open the screen door he was "stuck" there. It is otherworldly. I would certainly like to know if there is something else going on.
I am coming to the point of trying to know for ME, when to do things, and not to put it all on the doctor.
And oh Judith, I am going to see about a walker, we have a chair. He does not go very far but I guess it could help anyway.
It has been a very rough week here, thank you for caring and all you others know I give my heart and prayers to you too. Our shared pain, not precious, but at least we understand each other.
You can do this Coco. Listen to your heart not your worries. That market will be waiting for you and is the window to other meanings when those times come. Stay strong.
Coco--I'm going to state the obvious. There's a huge difference in trying to do medication adjustments at home, with advice from doctors, vs. a stay in a hospital geripsych setting. I finally threw in the towel on the home adjustments last year and my husband was admitted to an inpatient unit. The results were great.
We aren't doctors, or most of us, even nurses. If Dado had another disease--let's say cancer--the expectation would not be to keep him at home and try a little of this or that on the advice of doctors. A barrage of tests would be done, the appropriate treatment would be determined, it would all be scientific. Sadly, there is little science available to help treat dementia; but I believe that 24/7 observation by medical personnel is the best we can do to address our LO's multiple problems.
I recognize that because of where you live, the logistics of such a stay are complicated. However, complicated doesn't mean impossible. Please consider what the others and I are saying about a hospital stay.
Legs getting stuck does sound like Parkinson's. The VA can be reluctant to diagnose Parkinson's, because it is on the automatic agent orange related list so makes it a service connected disability (if he doesn't have one already). Push them. Sinemet is the safest medication for Parkinson's, but it can increase hallucinations.
Coco, you are an awesome and caring caregiver. Give yourself and pat on the back and then put one foot back in front of the other foot. We all love you and support in your decisions. Only you canmake the decisions on what to do. Here is a big ol hug from South Georgia.
He is falling constantly. I gave him a smaller dose of his daytime seroquel which I was hoping would help. I just heard a huge thump and went in to find him on the bedroom floor, again, crying in frustration. I just cannot keep him in bed at all times.
Yes I need to get the DR.s to admit him for re evaluation. He has such bad legs and his limbs are tight, hard to move. Sometimes I wonder if he is further along than I think, however, despite the horrible physical symptoms he still knows me, knows the cats, and is fairly aware. The old if you have see one, you have seen one.
I am having to harden my heart to his tears, or I just can't do it.
As this is also my last week for work, I am starting to feel a sense of relief that I don't have to stress over getting ready for the market, all week long. Oh bless my sister bless her so for helping us, for knowing in her last days, and seeing ahead, how hard it would be for us.
I forgot to say, I am now getting angry, which is a good thing. Angry because I think having him re evaluated should be something the doctor should have mentioned, instead of oh you just have to let him fall.
And, carosi got me going too, on the big girl panties, and to not always depend on the doctors. Sometimes I think you have to really hitch up those panties, or big boy briefs, so that you can FEEL the strength that you need to have., like a nudge or a slap. Not just a bit of a hitch so that if feels good, (sorry had to), but a strong one that hurts a bit.
I am now, so bloody grateful to be knowing I am taking time off work...just one more week...
Coco...Hang in there dear friend. You are really having a bad time of it. When some one tells me they didn't like the advice they got from thier doctors or other health care people...I always say...remember, they are working for you...you know Dado the best and you probably know what he needs now better then anyone.
Coco, I know the relief you are feeling about work. I felt that way when I knew that I had to quit a year & a half ago. I knew that I would miss it, but I also knew that it had to be that way. God bless your sister for being able to help you. It's like she is giving you a hug from heaven!
I feel so for you, Coco!. I have the opposite here. He sleeps ALL day. I hate to have him up all night while I sleep though.. It's harder for you if he is up and active. Does the V.A. pitch in and help you with anything? I wish you could put him in a facility.
Falling! Okay, first of all I want to let you know that I had no experience with seroquel. The geriatric hospitalist was going to try respiridol (sp) but H was discharged before that, and well, I'll just leave that there.
Coco, please don't try to catch him! My experience with H's falls had many versions. Similar to what Vickie posted, H was 6'2". Now, I am fairly tall and not nearly as petite as Vickie, but what I experienced is that catching just cannot be done.
H had symptoms and Parkinson's came into the picture but very late, so I can't really speak to that either. But he developed a set of behaviors; it was like weaving, sheesh, I don't know. The part of the house where the carpet transferred to tile and he would kind of tilt there, kind of like not wanting to cross that barrier.
My words are not going to be eloquent. The increasing falls were scary. He would just kind of glide to the floor. As long as I could get him to a sitting position I thought it was a victory.
As these falls increased, it took longer and longer to accomplish this. I think your Dado has a better, more compliant temperment than H did. H would hit and kick at me but I did not give up until the day came that although he said he would get up and could get up but it didn't happen.
Coco, this is something I have posted here before and it is still not easy to post again. When EMT came the night of hospitalization (it was almost May, very warm and I was wearing shorts and a yoga top) they saw the hematomas on my legs and arms. They saw his "dishelved"(sp) look and my memory is fuzzy on this, but I know they asked if I had been abused and may or may not have asked me to sign something. It was intense, and there were at least six in the house and I don't remember every detail.
I will maybe delete this after thinking about what I have written here, but I just want for you not to get into such a situation. Of course, I don't know (you could fill a book with that) and I think it is good that you are already on hospice which was not the case with us because N said it was not yet time.
I just want to say, protect yourself too.
Sending you love for as long as I can stand to leave this message up.
abby* thank you so much for telling me all that, though I do remember it, it is good to be reminded, now it seems more clear.
A thought that comes to the front for me, is , I am NOT QUALIFIED to deal with someone that is falling alot. Mental issues, are really tough, but as long as they are not violent, can be dealt with. Sanitary things too, no we don't like it , but WE CAN DO IT. Trying to just let someone fall, and wait for them to come around, well this is just too much. And you never know when it is going to happen.
I am working on it. I am really trying to avoid some feelings, and to stand outside and look in. And I am trying to stand firm.
My thoughts are with you, Coco. You are trying to give your DH the best care possible and you have no easy options. I'm so sorry you and he are suffering so. ((((((((HUGS)))))))) from a newcomer.
Coco, I am so sorry your dh is falling. My dh falls a few times a month... The first time it happened I tried to help him up but he grasped my hands so tightly it about made me pass out. Next time I told him to grab my forearms and still he is 6' and over 200 lbs, and I am 5'2" and small so could not get the leverage he needed. Now when he falls he always asks me to help him up but I tell him I can't. He gets up after a bit. I dread the day when he actually hurts himself and can't get up. The dr. did mention that if he hit his head he could get a hematoma and bleed to death.... I always check on him till he gets up but it is scary...So sorry Abby about him fighting you, so far my dh is incredibly docile and always just smiles and yes giggles.
is he on seroquel grendelsma? I don't know how you can deal with this falling.
I don't know how people can find the strength to place their spouses. I am investigating Medicaid assistance in case he gets a bad injury and I cannot care for him. Dear God how I want to be able to do it at home, but I am wondering if I really can. I am so sore and tired and restless all night. I feel a constant ill feeling in my soul.
I think of all of you that placed, and I think of the writings where some of you curled up and yelled and sobbed in deep pain, and wonder how I can do it. Just sitting there on the chair and looking at him sitting in his chair on the deck, and it is just too much. It feels primal. Cannot even find my big girl panties today, but I am looking for them.
It is good to love him so, but it would be easier if I did not. I don't mean to offend anyone with that statement.
Coco...Sorry it is another bad day for you. Maybe you need to think about what is best for his care. There is NOTHING wrong with saying, feeling, knowing, you can't do this anymore and it may not be in his best interest to do it. First he must be safe...and I know you already know that. If Jim had not gotten so bad so fast I would have had to have placed him within weeks. The same questions you are trying to find answers to are the same questions most ask themselves before placement. If I knew anything I knew I couldn't care for Jim at home if he were bedbound....that is why I posed the questions to you I did the other day.
Are you able to physically do everything for him if he is bedbound, change his clothes, change his bedding, feed him in bed, change his diapers..on and on?? Without help almost no one is able to do that. I certainly knew I couldn't do it. But, I was fortunate and the VA came through with help for him along with hospice. And, he didn't have to have that type of care for more then 2 or 3 weeks. Also, if you place him there is always the possibility when he gets worse and closer to the end, you could bring him back home.
My heart is aching for you...it is so difficult....pick those panties up from around your ankles and look at the total picture. Don't make yourself sick or hurt yourself....Please..we all love you and would be there for you in a minute if we could.
two big falls today, really hard falls. And this after I lowered his daytime Seroquel a bit. I also noticed his hands and feet look swollen.
Have once again left messages with doctors, and my tone is not so sweet anymore. I am starting to feel abandoned and I see Judith KB* why you have a love hate affair with the VA
Yesterday when I talked to the Social worker, she told me if I called 911 just to come help pick him up, that it would not be covered on insurance and I would have to pay for it, as it is not an "emergency" Is calling fireman something different? He has a hell of a time trying to get up, and I am sore all over from past episodes. How nice just to watch him try and try and try, as they told me to do.
She also listened to my concerns on his falling, and basically said, I just don't know how I can help you. I told her to make sure to keep records of all the things I am telling her, that I am keeping them.
Coco, none of the so called professionals are helping you much. Do not listen to the social worker, just call 911 and say that Dado has collapsed (and also mention the swelling) and if that is not an emergency, I don't know what is! I am so sad that you are struggling with so much, without any support. Those big girl panties will be split at the seams shortly if help is not forthcoming! Just go with your gut feelings Coco,all the very best to you.
What do you expect the docs to tell you when they call back? If they want to see him, can you manage that? Can you get him to any kind of geriatric center? When he falls, can you get him to crawl to a sturdy piece of furniture, like a couch so he can pull himself up? Can you bring a sturdy piece of furniture to him, a strong kitchen/dining chair, maybe? Not on a slippery floor, have him grab both sides of the seat, if you can, get him on one knee and pull himself up, using the other leg for strength. The swelling could be fluid retention. Don't let that go unchecked, it can be serious & lead to many difficult things. I agree with Cassie*, call 911, say it's an emergency, it is, and have him taken to the hospital or whatever center you can get him to--not just to pick him up, he'll only fall again. You are avoiding what has to be done for the past two days, if not more. We all understand that, but you're in charge, like it or not, none of us did, you have no choice, you have to do what has to be done, for him and for you.
Coco....Yes...you have to do what is necessary now. I'm telling you again. You are the boss of the dr. and the social worker...they are working for you not the other way around. When I got the go around from the VA about help...I said..."OK" I know he is entitled to help and if you don't get me help here very soon you will have him full time. Next time you speak to that social worker..ask for the telephone extension number for her supervisor. That will get her attention real quick. Also, call your local fire department and ask if they come out to help you if there is a charge. No charge here...but, I called the Fire Dept. first and all they want to know when you call if it is an emergency. Also...tell that social worker that you WILL be calling the fire department because it IS an emergency and they can just take him to the ER...that will get the ball rolling for you.
Coco...something has to be done to help you now. You just can't keep going like this. I too think call emergency, he will get taken care of in there, and they too will see how desperate your getting...Dado could do himself some real damage, like broken bones with the falls....don't let it get to be too late Coco.
Just had to edit and add...you are at an absolute crisis point Coco.
yikes have I really been avoiding doing anything, is that what I show Bettyhere*? I hope not, but I have been known to be a pushover. AM I in denial over it? Am I just coming here to whine? Am I an idiot that cannot think straight? I am kind of hurt at some words, at avoiding for two days, or more, but not so hurt as to take a look at that statement. Perhaps I am living in a fantasy world where I think it is going to iron out.
It must be that I just cannot fathom the seriousness of it all. I hope I have not been neglecting him and what really needs to be done.
There in nothing to stop me from doing anything or going anywhere, I made a comment the other day that it is not so hard living so far away. I have made adjustments, drive alot, know we have a small hospital close by with an ambulance.
The social worker just called me and we were on the phone for almost an hour. I told her I am MAD, that I did not like being told to just let him fall. etc etc. She told me, that if he falls and I want him to go to the hospital, that I need to call the hospital advice nurse for VA and get her to order an ambulance. That way they would take him all the way to town and have to do the evaluations. But so many of you already knew that. She was much more helpful and concerned, but like you are saying, it is UP TO ME.
I will not post again until something more has been resolved. I cannot stand whiners and I don't want to be one. Sorry for rambling so much
Dear Coco, please do not be hurt by anyones' words. We all mean well but perhaps we are not expressing it appropriately. You are a wonderful caregiver! I have read everything that you have written and Dado could not have better love and care but I think that you need some emotional and physical, backup and support. God, it is all so hard to do alone! I was alone in caring for my DH and I can still hardly beliveve the horror of it all, just like you are going through now. But I just kept bossing and barging until I made it right for him (but I will never be right again) so don't be hard on yourself Coco, we all love and admire you.
Coco, this boat we are all in does not constitute a vacation cruise!!! You and we all do the best we can and no one can blame us for feeling like it is just too much at times!!! Hang in there, girl! When things are so horrific, I always tell myself there is nowhere to go but up. {{{BIG HUGS}}}
coco, sometimes we can take things out of context when we are emotional. none of us here want to hurt feelings or make anyone feel uneasy. i think its because we care about each other we try to nudge gently each other to see things from an objective view sometimes. your dear Dado falling is definately not normal. it could very well be the meds causing it or something else but it would take a drs evaluation of him, exams, and workups to say for sure. if your medical team is not making you comfortable you can demand new people be assigned to your case? its imperative for your wellbeing you feel that they are taking your concerns seriously as you are the one advocating for your ill spouse who depends on your wisdom and knows him best. squeeze those biggirl panties friend. you are doing an excellent job of caring for your man, just the falls are something that need to be addressed before he seriously gets hurt. nobody knows him like y ou do. mad is good sometimes, it gives us the strength to make things happen. let us know how you are! of course whining is allowed. we all need it now and then. divvi
Coco....First if I hurt your feelings you know I didn't mean to....You are going to be fine. You are facing maybe some of the worse of the worse right now...you will do what is right for Dado and yourself and you will make sure he is safe from harm and yourself...I know that for sure. In fact, you have the opportunity right in front of you now with his falling. You certainly have a solid reason to call 911 and have him taken to the hospital. It is so difficult. On April 14th...I had to call 911 and take Jim to the hospital because I was fearful he would hurt me or himself. This happens to many of us during this journey.
Hang in there...am thinking of you night and day. I haven't been sleeping well so I am going to northern California today to spend a few days with my daughter and I won't be back until Monday even. I will try and check in here while I am up north. I have to pull myself together too...and it isn't easy. You have good remarks from everyone on here....take care girl...and you will do what is necessary and best for the both of you. Luv....hugs....
Just got back from the trip to Hilo Hospital emergency. They had nothing to tell us, did a cat scan, examined him, told me to consult with our doctor and sent us home. Left at 11 pm home by 5 am not too bad.
glad we did it. I read all the notes above again and realized how many people told me to get him there. Even if there was no resolution yet , at least we tried. He is sure a wreck and I am trying to get him down now.
I know I have been manic. I will try to see this more. I also know, I cannot go on like this much longer, kudos to you brave strong people that seem to be stronger and truly more capable.I am just about out of here.
Coco, my dh is not on seroquel but he has m.s. just as every cared-for is different every caregiver is also different ... I don't think you are a whiner you are a ray of sunshine in a dark place. You must move at your own pace. Look into your heart you will move when you can.
Coco - I thought a lot about what I'd write to you, and whether to sugar-coat it or be direct because I know it might hurt you and that's not what I'd ever want to do. But you did something positive! One way or another you got him to the hospital. And what a day it had to be -- 11 to 5, horrible. I would have hoped for more, but they do what they have to do. Now you have to use this resolve to get help from the doc. I don't see how they can just say, let him fall. Supposing he falls in the bathroom & hits his head on the tub--that would be in my mind, always going right to the worst case scenario. We all write from our own perspective of what we did or did not do, we know how you feel and are trying to support you and motivate you. We can only respond to what you tell us and how we see it. If I had a magic wand, I'd wave it to you and make it all go away. We don't have any easy answers--just understanding. Can you try hospice?
yes Bettyhere* you direct words gave me a push I needed. I am just scared and down and I know I was really getting confused and did not know where to turn. I do thank you, all of you. I took the phone off the hook and just got up it is almost lunch!!
Read an email from his home nurse, saying she tried to call etc., and will call later. I had sent her and the Doctor a rather frustrated note yesterday, it could have come across bitchy. Don't care. I am such a panty sometimes and I have to change that if I want results.
SO thank you for all your care here, the Big Girl Panties seem to be back up again. Dado is out pacing on the deck like nothing ever happened. And yes, one of the times when he fell he had his glasses on and they could have cut his eyes. These are hard falls.
A sweet thing happened on our overnight vigil. We were getting gas at 3 am to drive home, in rainy Hilo town. There was a homeless guy sitting under the eave , he looked like an old Vietnam vet, all in camoflauge and he did not look dirty. Maybe in his late 60's, just sitting there with sunken eyes and the look of dementia. Something sweet about him. He did not ask for money but he looked a bit chilly. I had my favorite little flannel lap blanket in the car, and I said, Would you like this? He just said yes please, took it from me, and arranged his little spot on the ground with it. I will have to get another one of those soft blankets, I thought twice about it and almost gave him a towel, lol. You know it sure is the little things in life from the heart that make it worth it. I hope he is ok.
Coco-I'm glad you gave the poor man your special blanket. You can get another-perhaps that is the best event of his day. When we have local food drives I always put something special in my bags. Just because some one is down on their luck doesn't mean they have to be miserable. I once asked a social worker if it is demeaning to put pet food in the parcel.I didn't want the poor to think that's what they deserved. She told me pet food is appreciated and saved for those folks who have pets. My sweet Gracie always puts a can of her special treats in.
Coco...what a lovely thing you did for that poor man...that would have meant so much to him.
So glad you took Dado to the hospital, if you need to go again, they now have you on their file / records that it had been going on for some time...and surely they would go all out to find what causes it.. I was really worried Dado would hurt himself real bad.. Hugs
Just found this thread now ... wow, Coco, what you have been through! Keeping you in my prayers.
As far as calling the EMS -- I know ours does not charge when they come to pick up DH, which averages once every six weeks. They rarely fill out paperwork other than a general form that states they assisted with a fall. And they always tell me to call back whenever I need them.
Coco, I am so sorry that you are going through this. I absolutely know how you feel when the hospital just checks him out & sends him home. I have a story to tell about our hospital run, but I will start a new thread about it tomorrow. You ARE a good CG. It just gets so much at times that we just .........well you know. God bless you for making that homeless man's night better. You are a special lady!