Joan, I feel so bad for you. You are the one who has helped all of us and there doesn't seem to be anything we can do to help you. Just know we are thinking about you and hoping you'll be able to get thru Sid's bad times.
I know you can't get through to him - is there anyone else who can? Brother, friend, doctor? Someone who does understand but in front of whom you can basically provoke him to react the way he does to you usually - and have them be prepared to suggest that he take more meds? I'm worried about you, Joan.
Oh my dear Joan. It all seems so tough for you right now. You have heard all the advice - not your fault, ignore the rage, etc. Maybe you need to have some time for you. A time out with a friend to talk. I don't know the answer for you, but having been there, my heart goes out to you. I have heard all the things your LO is saying to you now. Some how I survived, but not sure how, just endured I guess. Hang on to all of us that you have helped. You need to come here and vent, like so many of us have done.
Joan, You have been a rock for me since I joined your site those many months ago. It breaks my heart for you to suffer so much. I pray that you can find peace. DickS
Joan-sadly you are learning that it is easier to give advice than it is to live through the nightmare. Nothing you can do will make it easier for Sid to accept his illness-that is part of it. Some of us have already been where you are and have come out the other side. Sadly it becomes easier as our loved ones sink deeper into the disease and become more passive. You are in the most difficult phase of the monster and you know we are all here for you. It's OK to use the hate word. Knowing it's the disease and not the person doesn't help very much. Nora
Joan, if you have DPOA for healthcare, and a dr has said he should be taking meds to get yall thru this, i dont see why you just arent crushing the meds and adding them to his foods! i would. if its an rx'd medication to help him with his illness i see no harm. i have to do this for my DH with his bladder meds as they are hard to swallow and he cant get them down, so i have to improvise to get them into his system. whats the difference? if a dr says he needs them so be it. if he refuses to take them, hes not in his right mind, so what is impeding your giving them to him anyway you can? i dont think there is anyone here who could disagree that your Sid needs medications to calm him down and get you thru this period. we have said it over and over on other blogs. its time you use your DPOA for healthcare and just speak with his drs and find what you should be giving him. its really not his decision whether or not he will be medicated is it?? he has dementia for cristsakes! and he isnt rational. giving our LO meds to get them (us) thru certain stages of this disease is imperative. i gave zyprexa and it zonked him out alot but was necessary for that time frame. its not a constant that you will have to continue a certain med forever, just for now, you are exhausted and at your wits end. none of us have to accept the verbal and physical abuse that comes with dementia related illness. your Sid is no longer the man you knew or in his right mental capacity, and its your option as his appointed healthcare official to decide what medications he should be on for now. i dont kn ow why you arent using this to your benefit and his. once hes under control you both will be able to tolerate the disease on a higher level. my best to you, and worried as well- Divvi
In Florida you cannot force a person with a mental illness to accept treatment or medication. Unfortunately AD is considered by too many who should know betterto be a psych problem. You also cannot medically restrain them. Where does that leave the caretaker???
yes i can see where there are legal rights for the dementia patient, but having DPOA for healthcare isnt this WHY we have it?? can someone clarify why we have this then and what are the options using this power when needed? my DPOA healtcare appooints me to authorize 'care' i deem necessary for DH's well being and safety, if he is incapacitated.- and if you call 911 and they take them to a psyche ward they medicate them asap even against their will dont they? i wish someone has some info here. i guess the other option is to have them officially declared incompetent in court and having guardianship -? what are joans options, can anyone offer any input. we need to help her out.. sunshyne maybe you can investigate for joan! divvi
Thank you all so much for your input. See, I need you as much as you need me.
After an hour and a half of "discussion" this morning, he has agreed to take the medication. I honestly believe, that if it wasn't for my training and background, which includes 25 years with special education violent, brain damaged children and adults, I never would be able to get through to him at all. But I did. For now. We only have the day, don't we? So much is forgotten by them the next day.
By the way, I went back to sleep at 5:30 AM, and woke up at 11 AM, which is when our "discussion" started.
Thank you. Thank you for your care and concern.
P.S. - I just read my e-mails after I posted this message. WOW! Another great big thanks to all of you. I will answer each one - they meant soooo much to me.
It's too long to copy and paste but if you Google Baker Act you can easily get all the Fl.info. My husband was baker acted three times. While he or she is in the facility the caregiver is granted legal guardianship. This is discontinued on discharge unless you pursue it-very expensive and difficult to do. I had to sign for every medication given including being called at all hours during the night if additional medication was needed. Two persons had to be listening to our taped conversation to authorize even prn meds (given as needed). When I refused a drug I felt inappropriate the hospital threatened to discharge because I was blocking treatment. This was after I was called and asked what his diagnosis was (FTD). It sometimes seems everyone has rights but the caregiver.
I had to finally accept that my husband was not and never would be again, the man I married and "loved". When I did that, the emotional wall began building around me so that I could let go of that "deep, love connection" between us. That deep, everlasting love connection makes us feel we have to keep doing 200% to take care of his disease. When you let go emotionally, and start accepting that he is no longer your "husband", you can stop feeling that "until death do us part" is the rule you have to live by. He truly is in God's hands now, and when you can't do anymore for him, or live with him anymore it might be time to start looking into nursing home care. There does come a time when our "center" has to come back to us. If it doesn't, then we become sick ourselves. That is not being selfish, this is doing what your husband, the one without the disease, would expect you to do. Take care of yourself and your health also.
Joan, I feel so badly for you and for Sid. This dreadful disease makes us all crazy. You have been a rock for me over the time I've been on your site. Your blogs are an enormous help. My DH is not to where Sid appears to be - but I know my day is coming. Just take care of yourself and do what you have to do. My prayers and thoughts are with you.
Joan, The last episode like this one that my DH went thru lasted for 6 weeks. It was HELL I hated to go home and I felt that people thought that his attitude was my fault. I started crushing his meds into his food and drink and felt guilty every time I did it. However, It worked and he finally leveled off and started acting somewhat like himself. He had no memory of this. HUGS phyllis
Dearest Joan, I was where you are about 18 months ago. My advice is....do whatever you have to do, I agree with divvi. I really would not worry about whether he agreed to take a med or not, I would just get it in him however I could. This is not lying, it is acceptable deception. My episodes with my DH lasted for months and I was readly for divorce or collapse. Then along came SEROQUEL...it worked like a miracle for DH. He is now down to 25 mg at bedtime, but believe me it was a wonder drug for me when all the agitation was going on. He is now like a little lamb. He never questions my actions about finances, decisions, anything. He takes whatever medication I give him and I believe truly "trusts" me.
Joan, I feel so bad for you having to go through this problem. All I can suggest is that you go to the doctors and find out what you have to do to survive this part of the disease. If he won't take his medications, perhaps he needs to go to the hospital until they get him stabilized. Please, please take care of yourself.
Joan, I am so sorry for your difficult days. I agree, I would get the medication in him somehow. You have gave so much to all of us, I just hate you are dealing with this driving issue again. (((((HuGS))))
Joan, so sorry you are having to endure all of this. This type of situation is similar to another situation I am familar with in that a child of 14, a daughter of a Bi Polar mother in a divorce situation. She seems to have something called split-personality disorder where she focuses on one person with unreasonable anger and lies, while presenting to the rest of the world a calm, quiet demeanor. In this case it is her father. In your case it is you who is the target. I agree with the others it would be best to try somehow to get the necessary meds in him for his sake and for yours. If you get down who will take care of him? Please be careful and safe.
Joan, I really feel for your situation. It occurred to me that Sid may not remember the agreement and I agree with the above to grind it up into food. Heck, I remember giving my husband MY anti-anxiety med mixed with wine when he was on one of his rants. I just wanted him to go to sleep. (And stop screaming.)
Since then, things have been so "normal" around here, that I have to remind myself I did keep a journal of his outrageous behaviour. I will look at that again tomorrow. I stopped writing in it when I knew that something was way off. (And with the help of those on this site, it was figured out.) I should have kept up with my journal. The latest was a couple of days ago. I was proud of myself for clipping my cat's claws myself with scissors. I told him about it, no trip to the vet, ugh...and then I started doing it in front of him. He screamed bloody murder. I was going to poke the cat's eyes out, etc. So.... he went to the pet shop and bought clippers. I looked at the package & read, "it says dog clippers." OMG, you would have thought I had created WWIII. "You think I'm an idiot, you don't trust me", and on & on for 10 minutes. I guess I've become numb. I said all I did was read the package. I guess it was so disproportional to what I had said that it really didn't affect me. I just went on my merry way. Last year I would have said, you need to apologize to me. I figured, why bother? Get those meds into him any way you can.
My heart goes out to you Joan. I am so early into this disease as compared to you or others and I find myself having trouble coping. I don't know how you've done it. You aren't alone! There are some good ideas on this site. Is it time for Sid to live in assisted living or nursing home? Can you get someone in to help you? You've got to find a way to help take care of yourself. Each and every incident is like a weight on your shoulder. It starts building and building and before you know it, you are on the ground and don't know how you got there. Can you get some respite care so that you can take a break and start thinking more clearly?
Thank you again for all your support. It lifts me up and keeps me going.
Sid is in no way even close to functioning where he needs to live in a facility. And he has agreed to take the increased medication. We'll give it a few weeks to see if it works. If it doesn't - back to the doctor for something that will work.
He is going to the movies tomorrow afternoon with a group of our friends. That means I don't have to drive, I get a few hours to myself, and tomorrow night, we're all going to Town Square for an Antique Gangster car show, food, music, and then back here for dessert and coffee. And on Sunday, I don't plan on getting out of bed.
divvi, the powers that a DPOA will give you, and the time that they begin, are spelled out in the document itself. Sometimes you have authority the minute the DPOA is signed, sometimes you only have authority when the person is incapacitated, and it may require, for example, two doctors to certify that the person IS incapacitated. Generally speaking, though, I don't think any DPOA gives you the power to force medical care that they don't want on the person. And any DPOA can be revoked by the person. If Joan has one, she needs to go over it carefully to see what it says.
The "Baker Act" appears to apply to emergency situations. I don't think Joan's situation falls into that category (unless Sid threatens her physically, so that she is in danger.) So if she wants to have the legal authority to make Sid take medicines to treat his AD, she would need to take the more deliberate and controlled process of petitioning the courts for guardianship. Florida does have adult guardianships -- I think all states have some version, although many call them conservatorships (which is what we have in California), and the basic process is usually similar but the details differ from state to state. One can be guardian of the person, of the estate, or both.
" Adult guardianship is the process by which the court finds an individual's ability to make decisions so impaired that the court gives the right to make decisions to another person. Guardianship is only warranted when no less restrictive alternative—such as durable power of attorney, trust, health care surrogate or proxy, or other form of pre-need directive—is found by the court to be appropriate and available.
"Florida law allows both voluntary and involuntary guardianships. A voluntary guardianship may be established for an adult who, though mentally competent, is incapable of managing his or her own estate and who voluntarily petitions for the appointment."
I imagine the process isn't all that different from ours. It can go through relatively quickly if the ward is agreeable, but it can take a lot of time and money if the proposed ward protests. I have trouble picturing Sid cooperating...
The other thing Joan could do is simply sneak the meds into his food, as you and others suggested, and I vote with the rest of you: Do what needs to be done, Joan. I rather suspect that having the "right" to medicate Sid isn't going to make him one whit more cooperative about taking meds than he is now ... probably less so. As long as doctors are willing to prescribe a med that is needed, who is going to poke their noses into whether or how that med is administered?
I think the most important thing the DPOA may do for Joan is give her the right to talk with his doctors about his health. But if the doctors are used to talking with her without one, well, they can ignore HIPAA if they choose.
The only thing is, be sure to check with the pharmacist about whether a pill can safely be crushed, or dissolved, or if it's available as a liquid. Some meds should absolutely NOT be crushed or dissolved -- some of them have a controlled-release component that is disrupted by crushing, and you end up delivering much too much of the med all at once.
Sometimes, you can get a med as a cream, to rub into the skin -- that might be a good way to go if Sid likes back rubs etc.
Like Sunshyne says: I'd check with the pharmacy to make sure it's ok to crush the meds and without a second thought or a backward glance, I'd put it into his food. Who's going to tell? How is anyone going to know. You are taking care of someone who needs the meds. Personally, I think it would be irresponsible NOT to get the meds down him. Perhaps I'm being ignorant. Good luck!
Also,Joan--if the presrcibed med doesn't seem to be helping, get with the Dr, asap. Thetre are multiple coicxes for meds for depression (just like for Alz) and what works for one (or the dosage for one) may not work, may even aggravate in another case. When my hubby's Thorazine had to be replaced, we went through Seroquel,Zyprexia,and Risperdal before finding Geodon to be the best(not perfect) choice, and it was all done at home. Tough 5.5 months. Your situation doesn't need to be that hard. The correct dose of the correct med, administered to get it down him on schedule and this will straighten out. What I have found is that it is vital to get back witrh the Dr. ASAP if the prescribed med isn't doing the job. Don't lock in on waiting until "the next appointment" or "giving it x number of weeks." If you start or are using a med and things are not working as projected in what "you" believe is a reasonable time, ghet on it. You know Sid's system better than anyone else. The sadness, anger, etc. that comes from depression can be dangerous to him and to you so it is vital to be on this quickly and hard--before it escalates to a need for hospitalization for safety. You really don't want that if it's avoidable. The fact you can still talk him down is a huge plus. We are here for you. You are a strong, intelligent person with a huge challenge. As I've learned, 'this too shall pass'. We just don't know when and what into yet. Give yourself a treat today.
Carosi is right! Our son had a major depression when he was 17. He tried 3x to take his own life. The dr put him on a med that was suppose to calm him down. He acted as an accelerant. He was literally running up and down the strees half naked crying and banging on cars parked on the street. His brother ran after him and tackled him to stop him. I was told to give it a chance. A chance? Not on your life. I called and said I was calling the AMA if I didn't get some help here right away. I got help within an hour.
Don't wait until the next appointment. You are a very sweet woman but you may have to get really 'uppity' to get what you want. Oh, they'll write on the charge "hyper woman' but that's ok. You need some relief and you need it now, not when someone gets off of a golf course.
Forgive the lecture, please. It's just that it's so doggone important and you are the only one there who knows it. Please keep us informed.
I've been called a lot worse than "hyper woman", believe me. The situation is under control at the moment, and he IS taking the medication. The insert that comes with it says it could take up to 3 weeks to work, but I should be able to tell in less than that. We have an apt. with the neurologist for a lot of testing a week from Monday.
Comment Author Amber Comment Time 16 minutes ago edit delete
Hi Joan,
This is why I got an apartment in town. I can still look after him but I have my sanctuary. Alot of people have judged me but I have now gotten to the point where I just tell them where to go. They are not living what I am going through.
No one could ever possibly imagine or comprehend what we, as spouses, go through. There just is not enough understanding of what Alzheimer's Disease is in the general public. No one here would ever judge you.
Amber, I also got an apartment about 6 blocks away from my city house. I used it as a calm place to regroup and just keep my sanity. Now I feel like I wasted a lot of money, but it seemed necessary at the time. I didn't care about being judged either, in fact, my friends thought it was pretty cool. I don't think they realized the magnitude of my just needing to get away from time to time. Unfortunately, since I can't find a job, I am pretty much stuck with just leaving the house to get out. I understand completely.
Can't 'get out' with any ease. Salvation has been reading. I enter the world of the story and everything here fades away. Read everything--romance, paranormal,historical,newspapers, cereal boxes, this site, e-mail,. . . When he's laying down and I'm on a ranch in Montana or solving a crisis in New York, or having tea with the Queen Vampire of Washington DC, the VaD doesn't seem to be such a problem. My body may have always been impaired but that drove me to exercise my imagination. In my mind I can do so much MORE than in real life. I live what is real, but enjoy the freedom to escape when I need to.
I had the unlucky moment one time to kiss my husband after he had been given his crushed meds. It tasted terrible - it is a good thing that the ability to taste goes along with the disease.
So Joan, crushing his meds and putting it in something with a good strong taste may need to be a consideration.
In our case, my husband went through a brief rebellious period where he did not want to take his meds. His doctor was very, very firm with him and told him that he was to take whatever meds I gave him. For some reason, that did the trick and I had very few problems with him on that afterwards. It amazed me that after all my struggling with the issue, that the doctor being firm was the one thing that worked.
Joan - best wishes on going through this difficult time, I will be keeping you in my thoughts and prayers.
Joan, one other thing - my husband now has trouble swallowing them all at once, so for the last two weeks, I've put them on his tongue one at a time with either tea or cranberry/pomegranite juice in his hand to drink between pills. He hasn't had any difficulty since I started the new routine.
I agree with therrja, when the doctor is firm with my husband, he will do it!
Some pills are just flat harder to swallow than others; I think it's the coating. Giving them to my husband one at a time, and saying, let it float in the water, now swallow, seems to be working pretty well. I know a lot of us read that "having trouble swallowing" is a sign of going into Stage 7 so we fear it, but maybe it's just something like being unable to tolerate gristle, or having a rough-coated pill..
Having an authority figure who is very firm seems to help with a lot of things. In my husband's case the nice policeman was both an authority figure and a very scary firm person. I never had a second violent event.
Dazed, I have always had trouble swallowing pills. I also have a bad gag reflex and always warn doctors and dentists about it. I think they go together.
my dh has a small gullet. has always had trouble with pills and a lot of food. he takes at least an hour at every meal, and nowadays I just make lots of very soft food. 'What with the small gullet and ad I'm constantly afraid he'll choke. Pills are areal trial, small ones are OK, but those big ones.... really difficult. I have tried crushing and mixing with pudding, but they have to be really crushed tiny. Ice cream works pretty well. when I give him his nighttime pills he swears he already took them, and I often find them thenext day on the floor or under a tissue. He delays taking them sometimes til I go to the bathroom, so I won't actually see him take them, and next day, there they are. Most times he cooperative, but there are those times........