In September, 2010 I decided to begin looking at Placement Options for DH. At the end of Apr./beginning of May,2011 I placed him on 2 NH waiting lists. His condition continues to deteriorate. His smoking is a key factor in that. I checked in September, asking our Area Agency Case Manager what would happen if I lifted my restriction on a long distance placement. It would go faster. Then I found out there is an ALF, local, with a locked Memory unit, that will accept Medicaid Waiver. The wait time is very short. In the meantime I’ve been struggling with an upside down mortgage, taxes, and insurance. November and December were filled with researchi ng my mortgage options. At the end of December I began the Short Sale process for the house, and began the first steps for his Placement in the Alf, to be followed with searching for an accessible apartment for me. The Nurse’s assessment was Dec.30. He passed, but right after New Years they called to say that they have significant reservations about accepting him because his lock on smoking is a trigger for flight, plus he is still with it enough to not want to be there. They agreed to hold off and will reassess in a month, during which time I am to consult his Drs. to make adjustments to dampen the elopement issue. So far, after a week of waiting for response, the Neuro-Psych’s Office has said to ask his PCP for the Chantix med to help break the smoking habit. For potential med reaction reasons, they don’t want to up the med which dampens his drive to seek cigarettes if he runs out, or thinks he will. I further asked about a Med Evaluation, to maybe make other changes to help. That appointment is next week Thurs. In the meantime, his name is now #2 on one of the NH lists, and the admissions coordinator reminded me that if he were admitted to the hospital for a med eval/adjustment, they could refer him into their system for Rehab PT, and once in their system, he could be moved Into the first opening ( overriding the wait list) because of his advanced VaD. Roadblocks everywhere. Tight regulations prevent his being admitted to the hospital for the eval/adjustment—define crisis. Yet, the Dr. has said, and events and documentation prove he is a hazard to himself. I cannot keep him safe at home. As his Legal guardian I am responsible for his care, yet my hands are tied. Both Dr.s and our Area Agency Case Manager have repeatedly said, “We can help.” “Call and we’ll help.” But when the rubber hits the road, they can’t because . .. If I could, I’d delegate his care to each of them in turn for a week or two. Give them a taste of what I’m dealing with. Might not change anything, but I’d have 6 weeks to hunt an apartment for me; or one for the 2 of us if his Placement doesn’t happen before the house sells. I promised DH I would keep him home as long as I could, but that if his condition worsened to where I couldn’t keep him healthy and safe; or if my condition did; or if something else big happened I wouldn’t have a choice. I also promised I would not lie nor keep things secret from him. That I have been able to do. I’m not depressed over all this. I am FRUSTRATED…AND ANGRY ! I have done everything I can to consult the professionals and provide DH the best care I can. It’s past time for him to have full 24 hour care. Where is the professional help I’ve been promised?
Having no experience in this type of behavior or problem, I really can't offer much in help. Do you think if you called ALZ.ORG. they could help and maybe even find the right place for you or talk to the place you would like to see him placed in? You are really in the position "when it rains it pours". Hope help is right around the corner for you.
This is total madness. What Carosi will NEVER mention is that she herself, is severely handicapped. She has a form of Muscular Dystrophy, wears braces the length of her legs, and cannot maneuver about without crutches or a wheelchair. It takes her almost 30 minutes to put her braces on and get dressed in the morning..until they are in place, she cannot begin to stand up. Her hands have been affected by the disease as well and she has difficulty grasping objects. She is barely 5 feet tall.. (I think she's shorter than that!!) and her DH is much taller and heavier. Now, you know what I know..and consider the fact that the powers that be expect her to take care of a tempermental husband who has Vascular Dementia and is a flight risk. If she fell, he would not be able to comprehend the situation and would not be able to get her up. The same for him.. she cannot help him if he falls.
Carosi, if he says NO, simply agree with him.. but keep your course. NO is a very familar word in the world of dementia. I only wish I could "fix the system". I tried every avenue I could "back when", and I know it's screwy and very unfair. I only wish there was a powerful advocate somewhere who would take your situation to national broadcasters..and bring forth those all-knowing people who get to decide if you can continue on or if - by chance - see the situation as it is and do something! Here is an educated, hard working, but distressed American family that desperately needs some agency to step in in order to safeguard them both. She doesn't drive and has limited resources which prohibits her from hiring an attorney who would speak on her behalf.
I had the privilege of meeting this amazing woman, and if ever there was a poster child for "I CAN", she is it. She truly deserves a break, but most people in her family and network are so accustomed to seeing her handle everything by herself, they don't think about stepping in - taking over and resolving this situation. It's time someone did.
That may help, JudithKB...the safety issue alone should be of concern. Carosi, I don't know how you have managed to come this far in this journey....you truly are remarkable! Bless you! Have you approaced it from YOUR side of the equation...perhaps having your doctor advocate for you...or a social worker approachimg it from a safety concern for you and you DH?
Carol--I remember Starling saying something about her husband's doctor giving her "magic words" to have her husband admitted to a hospital. I don't remember what it was, but suppose you said the words "This is a crisis. Because of my own condition, I cannot do this anymore for one more day." I would push for the route of hospital admission/admission to NH for rehab/permanent placement in NH.
I'm not surprised the ALF is stalling. Your husband would probably be a challenging patient, and ALF's in general have reservations about people who are risky in terms of behaviors. I got the runaround from one facility for that exact reason. Also, the amount they are reimbursed for a Medicaid Waiver patient is significantly lower than the private pay rate. Put that together, and there's your problem with the ALF (I'm not saying it's right, but it's a financial reality.) Nursing homes, however, are primarily funded by Medicaid patients and so it seems a more likely solution.
carosi, I admire your strength and perseverance! I know how hard it is to care for a spouse when you have a physical disability, but my condition is not as extreme as yours. You always have a positive attitude and always give us good advice and a good perspective. Now having said that, could you qualify for legal aid based on income and or disability? Perhaps an attorney could help with some of your issues. Sounds like you're in touch with the Area Office on Aging- can they do anything to help?
If the doctor has documentation that he is a danger to himself, why isn't that documentation enough to get him admitted to a hospital for med adjudtment and evaluation?
I know your frustrations-I have not found ANY agencies that would help us-we're either too young for services, have too much income, our alz asso only provides lists of resources but isn't proactive in helping. That's been one of the biggest disappointments I've had on this journey-we pay lots of taxes but get no services now that we need them.
Bella and Marilyn are right. I was in the same situation, and I made it a crisis issue: "If somebody doesn't do something, you are going to have two patients on your hands." I remember using the word "desperate." It's outrageous when you do your best to cope, try to be reasonable, and no one listens. Then you have to pull out the hysterical button, which is degrading and takes it emotional toll. Dear God, the lessons we learn on this journey!
This insane limbo came about as a result of the overhaul done on the Mental Health System. Before, people could be institutionalized indefinitely with no appeal. Now we recognize that everyone has rights of self determination, so we have rules to protect us from restraints and involuntary institutionalization. It's why beds can't have full rails, and wheelchairs no seatbelts. Patients can refuise meds. They have "rights". Ideally true, but in real life, patients must take meds; beds must have rails sometimes; and wheelchairs seatbelts. DH is a danger to himself because of his VaD and fixation on smoking--BUT--until he is actually endangered by his actions there can be no intervention. The only ones I know of where this is not true, is in the care of small children. We can put them in a crib; strap them into their stroller, and administer their meds.
And no, I can't get him in because of my condition. His being placed can't be for my benefit. He has been determined to be an incompetent individual because of his condition and I am his Guardian, to make the decisions for him, but even that doesn't get this done.
I'm just tired of al the "We can help." "Count on us." "Let us know how we can help." and none of them Help.
Have you considered contacting the lawyer, judge or whomever that approved your Guardianship, even if you have to send a letter to them. Maybe they could pull some strings. It might bring some needed attention to the system as well.
Carol, I should preface this with a reminder that I live in B.C., Canada, but it is such a basic issue that I think you must have some of the same system in your country. I ran into the same problem, "It can't be for your benefit," investigated and found that because I was no longer capable of caring for him safely, that they HAD to place him where he could get adequate care. It doesn't make sense otherwise. I didn't care what they said; I could no longer physically cope. I remember that was when he was in the hospital for a spontaneous compression fracture of his lower spine and about to be discharged, and the doctor said to me, "We're sending him home to you." I asked my lawyer, and she was in the same boat with her mother. She told them her mother's hospital that legally they had no right to discharge a patient onto the street, and she, the lawyer, would wait until she got a bed for her mother in a Care Facility. They paid attention to her. I had to go so far as to threaten the hospital with legal action if they discharged my husband home to me to where he couldn't be taken care of. When I think back at all the problems we have to face on top of the care taking, it's horrifying. I've now concluded that it was a bluff on their part, "Don't bother us. Go away. It will be less trouble for us. We really don't care." Stand up to them, the b's. I feel so strongly about this that I can't help but think, "Just wait until something like this happens to you."
mary75* in the case youcited, the mother was alreadyin the hospital. If my DH wasthereIcould push as the Daughterdid. I can't get him in the door. He is nearing the topof one NH's waiting list, a nd the Admissions Coordinator has told me, if he was admitted to the hospital for a med eval./ adjustment, an assessment would pick uphis muslce weakness, unmsteadiness, and tendency to fall. They'd send him forRehab PT, and he'd bein their system. Rehab would determine they can't improve him, and they'd transfer him into the unit, ahead of the wait list. Thery would keep him until the transfer could happen. I have asked: "What if I end up ill or injured--in te hospital." They answered, he'd be brought with you when you first go in, then they'd send him home and contact family to step in---not necessarily at the sametime.
Yes, Carosi, you're right. It's absolutely nuts. All I can do is pray that a solution comes up quickly. And prayers are powerful. I'm starting right now.
You and I have written to each other nearly every day for over a year now. You are the most courageous person I know. What you face helps give me strength to face what I do. Frank told me the story of meeting you in New Orleans where your power chair suddenly malfunctioned throwing you hard face first into the pavement and while just the act of getting up can be a serious challenge - he remembered you announcing you were alright in case anyone was concerned and just getting on with things like nothing had happened.
What I remember was how excited you were getting to go to New Orleans and the way that experience breathed some of the life in you that others take for granted. And that you told me the power chair story like it was a minor inconvenience.
Yet through a life of constant hardship that would defeat most, you have wit and style and the ability to engage me and my strange philisophical ideas as an equal where I have the benefit of a good education, a lifetime of reading and study, and a life of privilege and access - while you sit there confined and struggle physically even with the keyboard and challenge me time and again.
I know you need no pity and have no use for it. I offer none. I just want to say publicly that I have no greater respect for any soldier in the field or human being I have met in my life than I have for you.
"I have asked: "What if I end up ill or injured--in the hospital." They answered, he'd be brought with you when you first go in, then they'd send him home and contact family to step in---not necessarily at the same time."
And if you were admitted and THEY sent him home without adequate supervision & care, could an elder abuse/neglect report be filed against the hospital? Against the discharge process?
It would interesting to see what the system would do with a report that cited his neglect of you . . . .
UPDATE---DH initiated an altercation with me this morning. I AM OKAY. I called the Police and had them have him taken by ambulance to the hospital. I have completed the paperwork to have them keep him. There will be several steps in the process, but the end result will be Placement.
I am still in shock--didn't see this coming, but maybe it's a blessing in disguise.
carol i join the rest in expressing my profound respect for your situation. you have done more than most and have done it better than alot without disabilities of your own. i reread your post friend. i know how desperate and anxious this whole scenario must be. but i know being on the outside looking in we can offer what we can to help find a solution. you said you have an appt next thurs for med evaluation. i hope this works but again its probably an adjustment and you keep him at home while he adjusts. i am not sure how it works in your area if he becomes aggressive to you if you could call the 911 and have him placed for a specific period (baker acted) to work out his meds? cigarrettes seem to be a trigger maybe it could work to your benefit. we have heard that once they are in psyche units for med evaluation they can be transferred more rapidly to full time care. its going to be tricky to get him into any facility if hes aggressive over the non smoking but i think you dont have much choice. medication is going to be paramount to finding a place that can take him. if you havent already you may want to consider contacting an atty (pro bono who will offer to help without charge) ==maybe check legal aide in your area-who is practiced in guardianships/family/elder law and then try to place DH even if hes against it due to the fact hes a danger to himself and you. there isnt any easy way to get help as spouses unless we have to force the chains of command that are available. i am worried for you friend that you have enough on your plate to handle and its time you use any means to get that help. the system just doesnt offer much in relief. we are pulling for you and hope this gets resolved sooner than later.
holycow. carol i think i had a moment of esp. i was thinking this as you see in my post. i am SO GLAD you are ok!! but yes a blessing as i was suggesting friend!!!!!!!!!!!! dont take no! and do not bring him home! divvi
Prayers work! I must have thought of you a dozen times during the night (I don't sleep well). What a blessing for you! Stick to your guns. I remember the hospitalist saying to me, "We are going to send your husband home by ambulance, and you'll have to take care of him." And I said, "If he comes in the front door, I'm going out the back," and I meant it.
19 months ago something like this happened to me. And the nurse at the ER was the one who made the call. She said, "You can't take him home. It is not safe." Next thing I knew a doctor I'd never seen before was patting me on the back and telling me that he was going to take care of BOTH of us.
Not every hospital or every professional is unaware. I know how lucky I was. Here is hoping Carosi is just as lucky and that now that he is in the hospital, they recognize that her having him at home is no longer safe, for him or for her. To this day I'm not sure who the nurse thought needed the safety. Possibly both of us. But the longer I think about it, the more I think she was talking about my safety.
Carol, we know prayers are not always answered in the way we expect, but it sounds like he might actually get placed as a result of this crisis. Please keep us posted. Will keep you and Ron both in my own prayers and thoughts.
I put my vote on 'blessing in disguise'. You were getting a run around because there was no crisis. Working in government and around policies I have learned that it IS the squeaky wheel that gets the attention.
Congratulations, I think you found an out. BTW - DO NOT feel bad or guilty about playing up YOUR disabilities within the system to get him where he needs to be.
Carosi- ever since I met you, I was so impressed on your attitude, courage, and dedication. You gave me strength by watching you, and by remembering how much more difficult it was for you than it was for me. You are my hero and I wish I could offer something more than my admiration. I am praying for you and know that your decisions will be sound and will be the best one possible, My heart breaks for you and I can only hope that my moral support will give you a slight boost in dealing with your situation. It is in God's hands, and the outcome will be exactly what it should be.
It sounds like you experienced a lifetime within the last 48 hours.
What I was going to suggest was your local law school if you have one nearby. I have spent so much time in lawyer's offices and read so many Bar Bulletins; I learned that many have programs that maybe precede Legal Aid, giving students the opportunity to participate in programs realted to justice. At least locally, they list contributions to that end.
Does it make any difference? I can't answer that, and hope that as the week starts, this is no longer a concern for you! Sending you best wishes, hopes, and prayers.
carosi, my prayers and good thoughts are with you also. You are doing the right thing for yourself and your spouse...please remember that! and keep us all posted on how things are working out. <<hugs>>
UPDATE-- They've started a couple medchanges. "His is a very complicated case" with multiple Psych illnesses. The search for Placement is being actively pursued, and could end being as much as 50 miles away (they're trying to stay close). There was some talk that if finding a Placement diudn't pan ouuyt, the med adjuistments could still be followedwithrelease back home. I am checking ASAP with Legal Aid on what cabn be done about that and on how this may affect the Guardianship. I haven't seen him since Sunday morning because of scheduling issues with the GoBus and the weather. Am keeping in touch by phone. I will do all I can to help make the transition go well for him.
Good friends have advised me to step back and let the pofessionals take care of him, and I am working hard to do that--not easy to set aside nealy 24 years of doing it myself. This has thrown me for a loop, because even though I was actively seeking Placement for him, I had the say of where he'd be. I'd be able to visit. The house would be sold, and I'd get an accessible apartment. Big changes but I'd have choices and be working on my own time frame. The house sale and apartment will proceed as planned but HOW do I fill the hole made when DH is gone but not GONE. Too far to visit, and difficult to advocate when i know nothing of where he is and who the care people are. There is a kind of closure in elective Placement--ending a chapter, but the book's not done. There is real closure when our LO passes--THE END. I am in neither place, and yet in both. Right now, I have no clue how to be a Wid....
Dear Carosi...I don't know what to say other than what's been already said here...My prayers and thoughts are with you. I have great admiration for you and your strength for what you have been through. You need to feel safe.
carosi, i know its a desperate feeling to have them taken from our care so suddenly. but its for the best we know that, although hard to come to terms. with all the hoops they are putting you though with placement, it may rush and obligate them to look a bit harder for you and try to place him sooner. by no means i would agree to bringing him home now that you had the opportunity to get him evaluated. it is very likely he will need continued modifications in medications and proper medical supervision while accomplishing this. by all means, get with legal aide and an atty who can offer suggestions and support. your safety comes first now and he would eventually be placed- but luckily it needs to be sooner due to the altercation. stay strong and advocate for both your needs. divvi
This mornin g threy were still looking 50 miles away or more for a Psych Hospital that couldtake him. This afternoon, the Localone got an opening and he was moved just b efore supper time. I go do the paperwork tomorrow. Better yet, the NHG I'd had him on the waiing list for, and liked best, has said they areopen to taking him once meds are regulated, and the ALF has said the same provided he's off cigarettes 30 days.
Not done yet, but getting there. This is not the usual way to accomplish Placement. I call it Placement the hard way 101.
Just reading this post and I am so sorry you are having to go thru this Carosi,,,,,, You are indeed a strong woman from all that I have read of your post. God has given your dh a blessing in you. I am so glad things may be looking up for you. I can't offer words from experience but still know that I can pray and life both of you up to a Higher Power. Please take care of yourself so you can relax, and breathe...... hope you have a great weekend..... full of good news......
Carosi's husband has been transferred back to the hospital from the temporary care facility .. with shortness of breath and a heart involvement which is further impacted by very low blood presssure. It's been a tough week for them both,.. keep them in your thoughts and prayers.
UPDATE--- DH is now stable. Being treated for congestive Heart Failure. Thios afternoonm he'll be transferred toy thePsych-Med-Unit atthe Hospital for a couple more days while they workto get the fluid in his chest down and continue his Psych Med Adjusgtments. Once the Medical isues are sufficiently cleared, he'll return to the OldrAdult Unit at the Psych Hospital. Hadto chuclklelst night when I sawhim. He infolrmed us the "they gave him a "Cardiac Arrest" the night before. Then he started describing it., "?THey laid me down on a bed and then they pushed it in a big long dome..." Maybe an MRI?<smile>
Poor DH... maybe he thought he was about to be shot out of a cannon.. Sorta feels like the inside of a cannon barrel, once you think about it. That would give anyone a 'cardiac arrest'.
Carosi,my LO to was sent to a Psych unit about two years ago to "get her meds straightened out" four days later they called an said we're sending her back to ALF that she escaped over an 8ft high fence twice while staff watched,I told them no way that was gonna happen an within two days they found another ALF for her,wishing you the best,stand firm
Update------ DH has remained in the Psych Med Unit. Adjusting Meds has continued. He has progressed to the point where Medicarehas limits, and he can now continue adjustments under NH care. Since the NH I want has no openings at this time and he has to go somewhere, He'll be going to one about 45mins. to an hour away. This is a temporary move until the other has an opening. I am not really happy about this, but will make it through. DH will be allowed 1 cigarette 6 times a day. They approach thios kind of thing on the premiseof they're terminal so lets keep them comfy/happy. Knowing DH,they are going to have their hands full with that. There is no transportation I can use to get there unless a friend or relative is free to make the trip. Calls are long distance. Lots of paperwork to complete and clothes to get up to him before the move.
carosi, as with all hardships you have endured you will make it thru this as well. hoping the other facility has an opening soon so you can get your ducks in a row to visit. so many of us if we were closer would drive you up there to visit in a heartbeat. hang in there!