As most of you know from my previous posts that the need to place my husband is drawing near and I am in the process of getting my ducks in a row but I do have questions that only you guys can answer for me. 1. Are loved ones on Medicaid treated as well as private pay patients? 2. I know that it is not unusual for a loved one to go down hill after being placed but has anyone ever felt that their loved one's life was a stake simply from being placed, not progression of the disease? 3. If the loved one truly hates the place and is miserable but bringing them home is not an option, how do you deal with it? These are the things that are weighing most on my mind and keeping me from doing what I need to do. Any and all input appreciated.
As for the patient on Medicaid being treated differently than those who are not, I have asked that same question myself. I do know that I have a friend who is a Charge Nurse in one of the better rated NH in our area, she tells me that most of the staff do not know if a patient is Medicaid or not. I would say No, they are all treated the same. I would say that some patients are favored by the staff more than others just because of the care they require. Our spouses with this disease would probably not be treated as well as those who can speak and help somewhat with what they are asked to do. This is just my opinion. This is the hardest decision a person ever has to make regarding the care of someone they love and it should not be that way. People who need to be placed in a NH should have the most wonderful care of anyone but yet we are living in a world that does not care.
It is my understanding that Medicaid patients are treated exactly tne same as other patients Jane's friend is right the majority of the staff have no idea who is paying the bill. There is an adjustment period for a new NH patient, the Social Worker can help you through the first few difficult weeks. Many say not to visit them for the first two weeks while they are making the initial adjustment. After they get adjusted the NH will become their "apartment" or their "home".
This is a tough decision, it isn't an easy step to take, I know it won't be very long unil I will have to make this decision too. My DW has become a serious fall risk, she fell again today, thank goodness for her sitter.
my dh is on medicaid and treated very well, we just had a bad scare and they took such good care of him, someone was by his side most of the time or checking him every hr. i have no complaints and whenever he has a bad day they console him, they also take care of me if i need it. as for adjusting my dh still doesn`t like it there but i have to be strong cause it is what he needs and i also need him there so i can be a better wife to him.
I don't think that basic care is any different from pay to medicaid. However, how much you sucessfully interact with the staff and how much they like your husband may make a difference in some of the "extras". Extra's meaning extra attention, extra time, paying a bit more attention to them. Learn the names of those that care for him and the other residents. If you can learn a bit about them so you devlop a relationship that will lead to them telling you things. Talk about some of the things that you and your husband did over the years or some of the quirky things he did. This helps to make him a "person" and not just a patient. One of the things that I did that really helped was a write-up on his life. The staff still refer to it and occassionally will mention something from it so I know that at least some of them paid attention to it. I didn't do the write-up initially for when he was placed, but it worked out to be one of the best ways of introducing him to the staff.
I am nowhere near (I hope) having to make this heart wrenching decision yet. I worry about it though because my DH has a long term care plan that has a time limit and then rolls over to, what is known in our state as extended Medicaid. I am glad to hear that there seems to be no difference in levels of care based on this factor!
Therrja, wow! what a great idea the life history write up is!!! I will definitely remember that one. :-)
Susan, looking now is a good thing as you may have to make a quick decision on this sometime in the future. It is much easier to know what is available and where so you are not playing "catch-up" and feeling lost. That may be me though, I am a planner and like to think far ahead and think things through very carefully. Doing this is part of what has helped me stay calm through some of the crisises (sp?) portion of our journey with AD.
Therrha, I'm with you!!! It gives me one less thing to worry about knowing that the care is equal!!!!! That is really BIG. I'm often told that I think to far ahead...that's just how I am.
I brought our wedding album in for the staff to see hoping it would help them realize that my husband is part of a family. I also brought in some of the plaques and awards and had them put up on the walls. The staff often comments on them. DH never noticed them :0(
I had the nh put my DH on their waiting list last spring. I am told the waiting lists can be quite long. I am also hoping that I am no where near ready...but just in case. The nh said if his name comes up and I'm not ready they'll just call the next one on the list and keep his name at the top when another "vacancy" comes up. It is quite a comfort for me.
If and when it happens, I have already thought about having a post on Carol's Blog about her NH life and the nurses and staff at the time. When Carol's father was in NH. I felt that staff treated all pretty equal. I do think the men seemed to receive more personal attention than the woman. But Nolan did have a sweet personality and did seem to be treated well. The final nursing home was nice but not much personal feelings for anyone. It was just an old person's place. Do the best we can but nothing more. Just seemed to be existing until death!!!! But my LW liked it and felt good about the staff. Let's face it, NH are the last resort. I sure hope I never make it to that point, even though we have LTC insurance. bill
The floor staff has NO WAY of knowing if the patients' bills are paid by extended care insurance, private pay, or medicaid. That is handled often by an off site Accounting Center, just as is the case in hospitals. There is no reason for you or anyone to discuss this with the staff. I do know that the staff will have their favorites, and treats from the family help to endear them to you...A plate of cookies, - a bouquet of flowers from your garden..or a big basket of fresh garden tomatoes. A lovely man in one of my caregivers' groups is a former banker. He proudly tells us all that he "kisses ass" with the staff when he visits his wife every day. He claims that it works!
I have visited at least 9 nursing homes in the past 5 weeks. I too do not believe medicaid residents are treated any different. The difference lies in whether a facility accepts medicaid or not. Those that are private pay have such wonderful memory care programs. One even has a mock apartment where the residents practice everyday chores like tablesetting and bedmaking. Their units are much smaller with only 15 to 20 residents so the care is almost one on one. If you cannot afford 40 to 70 thousand a year don't even look. I was mistakenly sent to 3 places only to have my heart broken at the end of the tour. Don't schedule an appointment...show up unannounced. If the place appeals to you go back twice more at diffferent times. If I understand the medicaid system, you are not stuck with a place if it turns out to be less than you hoped. I'm still feeling my way through the dark but knowing these things has helped me and I hope they help you. cs
In some NH the staff would know if it is private pay or medicaid. Private patients have a room of their own, medicaid share a room. There is one about 10 minutes drive from where I live and that is how they have their rooms.
((ehamilton)) I can share my experience with placing Lynn.
In answer to your questions:
1. Are loved ones on Medicaid treated as well as private pay patients?
YES! No one other then billing knows if Lynn has medicaid or not. Lynn is on medicaid but still has a private room. Others want their loved one in with a "room mate" even if they have private pay. So you can't always go by the room set up. The staff is wonderful to everyone. He is in a nursing home that has a lock down Alzheimer's floor. I have seen them sit with new patients who are aggressive and exit seeking for weeks! Never once losing their cool. Amazing.
2. I know that it is not unusual for a loved one to go down hill after being placed but has anyone ever felt that their loved one's life was a stake simply from being placed, not progression of the disease?
That is a hard one for me. Lynn's life is not at stake because he was placed... but I do believe his refusal to eat was initially brought on from the trauma of placement. He now loves it there, even calls it home. But, he still is not eating well. So was it the placement? or is it the progression of the disease just brought on sooner? If it was just placement, he should have started eating once he was well adjusted. He hasn't, so I think it is the progression of the disease.
3. If the loved one truly hates the place and is miserable but bringing them home is not an option, how do you deal with it?
I didn't deal well at all! On my knees sobbing. But, I will say, it was much harder on me than it was on Lynn! He DID adjust right in the time frame they gave me. It is taking me a lot longer. Placing Lynn is the single hardest thing I have ever done. But as someone here once said, you have to love them enough to give them the best care possible. It was just hard for me to admit that was no longer me.
Now I do still care for Lynn, but I have a whole staff to back me up! You can be as involved with his care as you want. I go see Lynn every single day, often times twice a day. I also call at least twice a day. They know Lynn is loved for sure! I am also very complimentary and sweet as punch LOL. Lynn doesn't eat well, there is one nurse who stops at McDonalds to buy Lynn fries every night. Another girl brings him in Duncan Donuts when he is refusing food. I offer to pay them back, but the refuse! They truly do care. Not just for Lynn, but for all the patients. Angels on Earth!!
I now know I waited way WAY too long to place him. He is so much better off there. Trained staff 24/7! I am now his wife and best friend again. We cuddle! Watch TV, take walks etc.... and I am hugged over and over and told every single day how much I am loved. Much different than being screamed at and hit daily. And I am no longer the frazzled caregiver just hanging on by a thread! Not one TIA since I placed him. I miss him!!! Home just isn't home anymore. But, it is such a gift to have this part of Lynn back!
It will be hard, but we will be here to help you through YOUR transition.. ((hugs))
i am totaly with Nikki , placing my dh about six weeks ago was by far the hardest thing i had to do, it is still hard for him, he was adjusting fairly well, he became dehidrated and his body was shaking so off to the er he went was not responding for four days, now he is doing well, saw him yesterday was quite the jokerster even laughed a couple of times, only asked to go home once, i do not see him everyday, only once during the week and on weekends, they told me i was there to much and to give him time to adjust, i on the other hand have not adjusted at all, home is not our home anymore, just a place to sleep my head. i am a better caregiver when i go to visit, there is no more yelling at me and even calls me honey again, the staff take good care of him and he seems to like them especially the guys, must be a guy thing that they can make him smile he always used to talk to his buddies alot when he was just Bob not with ad. as with Lynn my Bob does not eat well, seems to have forgotten how to open his mouth and i don`t think it is because i placed him just the pregression of the desease. funny evertime i go to visit he wants to grab the boobs have to cover it up cause always seem to have one of the kids and grandkids with me, i kind of chuckle to myself cause he always was a boob man. i do miss the sex part alot and cry alot late at night knowing i miss that part of us. so it will be hard on you but you will know you did the right thing placing ,to make sure your loved one is taken care of the way he deserves so ehamilton take a deep breath and do what you feel you need to do siber ((((((((((((((((hugs))))))))))))))))))))
Thanks so much for all the input. I think I knew the answer to the Medicaid care before I even asked it. I have since found out that the facility I am most considering (a small facility only 20 minutes from my house) only has 60 beds and of the beds that are occupied at this time, only two are private pay, so I imagine everyone gets the same care. A special thanks to Nikki and marygail for the advice on the other two questions which were what was bothering me the most. And still are. I know that I will never do anything harder but I love him too much not to do it. He deserves better care than I can give him now. I realized that the other night when I woke up at 4:00 am and discovered he was not in bed. I got up and found that he had had a bowel movement in his depend, took off the depend and put it in the clothes hamper. We have a six room house and I found poop in or on something in every room in the house including the kitchen sink. By the time I left for work I have given him a bath, washed the bedding, wiped down the bathroom walls, scrubbed the hall carpet and sanitized both the bathroom and kitchen sink. I had to leave the kitchen floor for the aide, I had run out of time and energy. If I had had any doubts before I knew then that I have to let someone else do the work and let me do the loving. As you say, hopefully I can be a better wife and caregiver when I am not exhausted.
I know how hard it is to leave them. I knew I could not physically help him and had to act quickly to get him placed. The direct caregivers are saints. I do not know how they can be calm and compassionate every day, share a smile and yet, get everything done. He was difficult for me- agitated at times, uncooperative and a real handful to bathe. Now, I can enjoy his company. He is in a hosp temporarily but today, he knew who I was, kissed me and even ate well. He even yelled at me when he didn't want anything else to eat!! I love the interaction. Last Wed, he was totally overmedicated and I had no response. He was unable to drink and eating was a chore. After getting the problems squared away, they are medicating him differently and he is better. Can't wait till he is discharged and placed nearby (va said maybe this week) so I can visit him often and take him for a walk. I don't know the answers to the other 2 questions because my dh really doesn't know the difference from place to place. He doesn't interact any more to that degree. Have faith and we will continue to pray for everyone in this situation.
Thanks to all of you who shared your experiences with us. My situation has changed since my earlier post in this thread. DW is back in the hospital again, she fell twice Friday, both times she was trying to get into the kitchen to cook. She fell the first time in the early AM, she was trying to cook herself some breakfast, I got out of the bathtub and came into the living room to check on her, she wasn't in her chair, I found her lying on the kitchen floor with a skillet of bacon goin 90 mph on the stove. Fortunately no injuries. About noon she decided to go into the kitchen to bake a cake, the sitter couldn't talk her out of it, again she fell on the kitchen floor, This time we called 911 and had her taken to the ER. She was admitted to the hospital. Her Neurologist took her off of Coumadin yetesrday because she was falling a least once a day. He told us the time to place her was here.
So Monday I will begin my search for a nursing facility, I know it isn't going to be an easy job, but she is now at risk for a major stroke as well as a fall risk. We have tried and can no longer take care of her at home. We know placement time has come. It will change our lives but I am hoping and praying she will make a quick and easy transition.
My thoughts and prayers are with all of you who are dealing wih placement issues.
My hubby is currently in a unit for medication adjustments but is still having some issues with aggression and combativeness. Last week the soical worker told me they plan to do a court order to put him in a state mental institution because he cannot go into a normal nursing home with the behavioral problems. I finally talked her into postponing it for another week and we are searching diligently to find somewhere that will be a step between where he is now and the nursing home till they can get his meds right. I just am SO upset and feel it is so unfair to him that they would even think of such!! I just know if he goes in one of those he will never come out as no nursing home will want to accept someone from a mental ward!! It has about given ME a nervous breakdown to have all these decisions thrown at me at such a fast pace. He has been in the hospital twice since the end of April and then all these med changes- enough to make anyone sick!!
I just started a discussion about a 'must read' book. It provides hints for moving your LO into some other place and much more. My heart goes out to you who are dealing with these nasty issues (previous posts).
DW has made it known that she isn't going to go into any nursing home and still feels she can go home from the hospital and function by herself. We will have to work with the Docs and the hospital Social Worker to get this issue taken care of. I'm hoping she will recognize the Doctor as a "voice of authority" and will follow his instructions. I am sure she will require some period of rehab again.
This is such a difficult, heartbreaking process. Does anyone out there have any experience and practical advice on how to handle this situation?
Jimmy, can you expect yourself (or a caregiver) to be with her every moment she's not in bed? Or within 10-15' of her? If you can do that, then you may be able to take care of her at home. She may even be cognizant of what's happening enough to accept that you are not going to let her cook! NOT. Turn off the gas or unplug the stove if you have to. Insist she use a walker. If she's dead set against a n.h., use it as a threat - if you don't use the walker... if you try to cook... You have nothing to lose!
We have tried this already, it takes at least two of us to handle her. She is unable to see the consequences of her actions, she is a danger to herself, she is not cognizant of the risks involved. The time has come to place her in a nursing facility. What I am interested in is how to get her into the NH with a minimum of fustration and agitation on her part.
Jimmy, Sandi and Briegull are on your side, and what we ALL need to be reiminded of is - to put it bluntly - that they are not capable of decision making..they can talk as if they are...but none of us can let their words over-ride what you and the doctor know is the ONLY viable option. Darn it, I hate this. I sat down today and explained to my husband what the "tire store man" told me about new tires for my car. If I bought Michelins, it would be this cost, if I bought Continentals it would be that cost... and on and on...and all the while, he looked at me with "those eyes" you all recognize. It was important to me to go over this with him. Just as YOU, Jimmy, are discussing it with your DW. But, in the end, you know, and I know, that it really doesn't matter what they say. I'll buy the Continental tires I already decided to buy, and you'll find a perfect nursing home for her..and we'll go on, one step at a time, one day at a time. I suppose that's what survivors do. Be strong, dear brother, we understand, and we feel your pain.
Oh Nancy B, No truer words were ever spoken. I was so used to talking over things with my dh that even when he no longer understood me, I wanted him so badly to understand. No matter what they say, we are the decision makers and it is not worth arguing about. Get the professional help you need to support you and do it. She will adjust and come around. I know it is so hard but when you realize you will have a life again and actually be better at caregiving whrn it is not all your burden 24/7 you will both relax a little. Your visits will take on a new attitude once she adjusts and both of you may actually "enjoy" them.
Kathryn, I will always "discuss" our business with my dear husband, until he takes his last breath. We don't know what is way down inside of their brain, and maybe, like a comotose patient, he may understand. We will never know. That's why I always tell him I love him, and begin our disucssion with "I believe you will agree that the best thing to do is ......", and go on with my discussion. He looks at me when I talk to him, sometimes he talks, other days he doesn't. Often, his eyes will slowly shut and maybe he is asleep again, or maybe not, I don't know. I'm not saying everyone should do what we do, I'm just saying it works for me., like talking with an imaginary friend. No one else knows he is there, but I can see him! :-)
well it may not work for you but i told my dh he was going to get the help he needed and they were going to try and make him better but he needed to be in the facility so they could see exactely what is wrong with him, as long as he thought he was going to get better he was all for it, i also told the staff this is what i told him to get him here, i know it is a lie but he excepted it and once there he had no choice no discousion didn`t understand it anyway
Jimmy, Lynn also refused to go to a nursing home. I knew he would. That is why I was advised to get guardianship BEFORE trying to place him. You might want to talk to someone about this. Most nursing homes require it if you have a difficult spouse. Believe it or not, if he had refused to stay, even with AD, they could not legally make him stay without the guardianship. Talk about crazy!
I have never lied so much in my life as I do now. At first it just ripped me up. I had never lied in our whole relationship! The nursing home calls it fiblets too, lol. Still feels like a lie to me. But, I know I am saying whatever I need to so I can help Lynn. It is the kindest thing to do.
Talk with your doctors, the nursing home and your family. Decide what you feel would be the best "fiblet" to tell her. But take some advice from me, don't tell her until you get her in her room. Accccck.. I made that mistake. Was horrible! Lynn STILL thinks we are staying there because I need medical care. He thinks I am upstairs having "tests" or "treatments" whenever I am not there with him. He says he stays because I need him. awwwww.
I know it is hard. Often times the right things to do are the hardest. We are here to help support you. Keeping you in my thoughts. For everyone going through this... ((big hugs of understanding))
It was very rough when my husband fought to be home, but I no longer could care for him, and one, or both of us, would have been dead by now if I had given in. He got over it in time, and he is thriving with 24-hour care he gets by staff who have enough sleep at night and time off so that they function to his benefit. There comes a time when you can't handle it anymore yourself. Marriage vows do not include a suicide pact.
jimmy, i agree with the rest above. lying to make the transition possible and the most comfortable is the only thing feasible on top of good medications to keep her calm and subdued. ultimately like said before we have to be the ones to call the shots, as painful as they may seem at the time. running things by them -well i do believe i do it mor efor my comfort even if i know DH has no real input or advice -'sharing' with the body but not the mind comes to thought. hope it goes well for you and DW.
Thanks for all of the good advice, I have realized for a long time that we have to call the shots. In our case we know we have run out of options and permanent placement in a nursing facility is the only answer.
One good thing has happened, we will be sending her back to the same rehab facility where she stayed most of this year. She has friends there, both patients and staff, so it won't be like starting all over again in a strange facility. We are hoping that a return to familiar surroundings will be an easier adjustment for her.
PS: I'm not really a very good fibber (not that I haven't told a few fiblets), but our daughter does a better job with it than I do.
I have told my husband that he needs to "live somewhere else" where there are people to take care of him around the clock and that I am not doing it because I do not love him but because I do and that he will get better care than I can give him (and he will). All of this is the truth. Then I told my fiblet. I told him that he knew he had robbed the cradle and that I was younger than him and that I couldn't retire yet (still the truth), but next year when I turned 62 and could draw social security I would bring him back home(fiblet). I don't see that happening but it is within the realm of possibility so it wasn't too much a fiblet.
That is the best explanation I've heard, I'm going to memorize that line, it exactly describes the situation. DW's PCP told her last night she was going to have to go back to rehab as soon as a bed becomes available, she seems OK with it. I know when she arrives back at the rehab facility she will get lots of hugs and attention, she will feel welcome and wanted. She has stayed there several weeks this year and has a lot of friends there.
Our daughter and I both are totally physically and emotionally drained, we have been dealing with the highs and lows of AD for about six years now. This Memorial Day she and I are going to kick back, drink some cold Mexican beer with lime slices in it, bake some taters, grill some steaks and talk about everything in the world but AD.
If anyone wants to join us, you are all welcome to stop by, but the rule for the day is "no AD talk".
I have a question for those of you who have your spouses (spice) in nursing homes - do you have to pay extra to have someone sit with your spouse during the night if they are constantly up and about? Or do they medicate them to enforce sleep? Most medications for sleep, even the ones the neurologist prescribed, have the opposite effect on my husband - they make him more awake and agitated. I'm thinking that unless I'm willing to have him medicated to the point of coma (which I'm not) that I won't be able to put him in a nursing home when I do need to do so. I'm not there yet. However, I am giving Divvi a run for her crown, which I DON'T WANT!
In the HBO documentary, Sancho's relatives paid extra to have someone stay in the room all night with him every night. That is what brought my question up...since my husband does get up and explore the bedroom and bath constantly during the night.
Mary, the extra care may depend on the kind of place your husband is at. The first facility my husband was in, if he needed that much extra care, then yes, I was responsible for paying for it. That place was more of an assisted living facility rather than the full care place he is inow. Where he is now, it is all part of the service. They don't care if someone is up all night or not, there are people there 24/7 that are supposed to be taking care of the residents.
When it rains it pours, about 15 seconds after I posted my last post the hospital case mangler (non capitalization & misspelling intentional) called me and told me the place that agreed to take her yesterday couldn't take her now! Then she asked me in the next breath where I wanted to send her like I have a whole list of places already checked out and ready to go. She has to go to one of our insurance carrier's preferred providers. I told her she wasn't going anywhere until I visited and approved the facility. It has to pass the smell test first.
I dropped everything, left work, and went to check one of the facilities out. It is a very nice place, much nicer that the last one she stayed in. It passed the smell test with flying colors. The corridor/nurses station layout leaves a little to be desired and the dining room arrangements are different, but overall it will work and is a little easier to get to from home. It is also right on the way to and from work. So maybe we lucked out. She will have to get used to a new place and will require a period of adjustment, but I think it will work out.
Now I'm waiting for them to call and tell me they have everything cleared and it is a go. I've got to get rid of this stressful situation. I'm still rolling with the punches, but the punches are getting harder and are coming at me more often.
The Memorial Day "kick-back & chill out party" is sounding better than ever. The rules are still unchanged.
This morning both NF and the hospital called me to let me know they had everything approved, set up and they will be transporting DW to the NF later this AM. Now I am waiting for the call so I can go meet her at the NF, get her room set up and do the paperwork. Everything isn't done yet, but I am getting closer to completing this ordeal.
DW called me from the hospital and unloaded lots of verbal abuse on me for deciding to send to her to a NF. She and I talked about this last night, but she has forgotten the conversation. She doesn't remember it at all. Here is hoping all goes well.
Jimmy - good luck with this. Having them in a convenient place to us does make a big difference in how often and how easy it is to get to them. When my husband was 5 minutes from work and 5 minutes from home, it was easy to go see him at all kinds of different hours. Now he is a 1/2 hour away from home and 20 minutes from work. That makes it more difficult for me to push myself to go when I am tired or not 100%. The only saving grace there is that I can make a round trip and get some errands done going to or from visiting him. There is one other thing - he is in a terrific place where he gets great care and that makes all the difference.
Jimmy, I am so glad that you have found a good place for her. Don't let her abuse get past your outer wall. It is the AD and not your wife talking, and you know that. You also know that her reason button is broken and her memory of what you told her is shot as well. You are doing the best you can for her, and she would appreciate it and YOU if she were herself. You are in our thoughts and prayers. (((HUGS)))
Mission accomplished, we now have her in the NF. She put up quite a fight at the hospital and managed to keep several staff members occupied explaining to them why she should be sent home instead, she called our daughter a couple of times and promised her she would stay in bed all of the time, told her she could go to motel instead and needed to stay in a hospital. They told us it took two people to hold her up just to get her pants on her. They finally sedated her and sent her to the NF about 3:30 PM. I didn't meet her at the NF, just took her clothes and hung them up in her closet, did the paperwork routine and left.
The folks at the NF advised us to stay away for awhile, we don't plan to try to visit until sometime in the middle of next week. At this point we will only agitate her and prolong her adjustment period. They put her in the Dementia Unit and she will be receiving some physical therapy.
The "kick back & chill out party" is still scheduled. After this experience we really need the break. We rescheduled the party for Saturday so both of our grown granddaughters can attend, so the crowd is growing. Daughter and I are planning another "escape" for Sunday or Monday.
Jimmy, I'm sorry your DW had a difficult time accepting the change. I hope she will settle in the NF soon and you can relax and enjoy some respite. Enjoy your party and your family. God Bless.
jimmy, I wish you good luck during this period of transition. I am glad your daughter is sharing a respite with you this weekend. This disease does effect the whole family, in various ways.