Last Sunday I put my body between my husband and the door, but after about an hour of fighting with him he got past me. I called the police and Safe Return. A neighbor who used to be a geriatric nurse spotted him and stopped him and after a bit of a battle we got him home again. Over the last month he has gotten more agitated, more anxious and more physical about having to leave and go home.
The next morning I called the doctor and we had him taken to the hospital where he spent three days. During that time they checked him out medically, and changed and adjusted his medications.
They never gave him so much medication that it zonked him out. I think that is very important to say out loud, because we are all taught that if we send them to the hospital because of behavior that is what will always happen. I'm not saying it hasn't happened to others, because it probably has. But not to my husband and not in this hospital.
When he got to the nursing home he was actually smiling. I don't think I've seen a smile on him in a month. And his walking had improved so much compared to his last few days at home that the nurses at the nursing home did not realize just how bad his walking had been. He looked steady to them and to me too.
He is going to get some occupational therapy to get back some of his lost life skills as well. They were doing assessments today.
It is very unlikely that he is ever coming back home. I reached the "I can't do this anymore stage" on Sunday night while he was sleeping. He has reached the point where I can't take care of him safely any more. Instead I'll be his advocate.
So sorry that you had to place your husband. I know from reading here that things have been rough for you the past few weeks. I admire your attitude. Any of us who have done this know how hard it is but we also spent a lot of time beating ourselves up over having to do it. I am glad you are not. It has taken me a year to come to terms with the fact that like you I couldn't keep him safe, but I will always be his advocate. Hope all continues to go well. Keep us posted.
Starling, I am so sorry that you had to make this decision but I am at the same place here. I have decided if he has to go to the hospital I will have him admitted to a NH. After his 13 days at a Gerophysc Clinic in Feb. I was advised to place him but I didn't. I now know that physically I am not able to care for him much longer. It is with a heavy heart that I say that.
Starling, I am so very sorry this has happened to you and your husband. How fast things change, none of us ever know when that time may come for us, and when and if it does it marks the end of a chapter in our lives and hurts deeply. Again, I am sorry.
Starling, I'm sorry....I know how you must feel. Don't feel as though you are in this boat alone, I'm there with you. My DH was admitted last Thursday, they are keeping him the necessary 3 days (probably until Tuesday due to the holidays) and he will also be placed, or at least that is the plan. I've been second guessing myself since then, but I think I am doing the right thing. He is still being restrained, as he is being somewhat combative, abusive and is very aggitated. I'm taking this in small steps right now. Rae
Starling, my heart goes out to you. I'm not there yet - but any of us could be at any time. You did what you had to do - and I love your attitude too. I do hope it all goes well and you can have peace and some rest.
Bama, I don't know how you've done it! And I know that great big heart of yours is breaking with the thought of having to place him. You can only do so much though. You have fought the good fight - and now it's time for you to rest.
starling i hope your DH adjusts soon and you can see that it was the right decision. violence and or aggressive behaviour is always one of the toprunners for placement. divvi
Starling, what can I say.....a lot of us have been where you are. Isn't it amazing how the last "straw" gets piled on and all of a sudden we just know we can't do it by ourselves any longer?
Please know that we are all here for you.....God bless and now take some much needed time for yourself.
Starling and Bama, I feel your pain. I dread that day when I will have to do the same. I'm fighting to do pretty much everything myself, even though I've been told I shouldn't. I can't really say why, except that I'm always worried how HE will react. I suppose it's been a part of our lives for so long, worrying about how he feels, that I'm still doing it. You're doing the right thing. I'm not there yet, mine takes care of all his ADL's and right now is putting away tools from pulling weeds today. That is really a surprise, as he hasn't been doing anything like that for quite a while. He saw me doing it and I asked him to help, and he did. But, I don't know what tomorrow will bring; hopefully, it will bring some of the same. Take care of yourselves. I admire both of you so much...
Starling - it sounds like you are the rare one in that the hospital did not see the need to zonk him out, just give him enough so he could enjoy what life he has. The fact he is smiling, seems happy, walking better and getting some help with life skills must give you some peace. Your experience is in contrast to so many others negative experiences with meds to calm them and placement. I know you miss him, but now you can 'enjoy' him more instead of fearing him.
''get back some of his lost life skills"" I wonder if everyone found such a good mix of help, if placement would have a more positive step? Starling's experience gives hope that there is a good combo of doctors/hospital/NH out there.
Starling, get some rest now so you can smile when you see him.
Dear Starling, there never seems to be a right time until it's done, and then you know it was inevitable. I think, too, that it is often harder on the caretaker than on the one being placed. Looking back, I see that the toll on me has been harder than the one on him. They see only their situation; we feel both. It sounds as if you have him in a very good setting, and I'm glad for both of you.
Bama, I am wondering why you feel the need to wait for a Hospital admission in order to place your husband? I know the 3 day wait and then Medicare pays for 20 days, and MAYBE up to 100 if skilled care is needed. but with this disease unless they are admitted and then discharged to a Nursing home and need some type of skilled care Medicare will not pay. I guess maybe the NH and Doctors could find physical therapy as a reason hopefully
Jane, somehow is just seems easier to transfer them to a NH from a hospital rather than taking them directly from home. Maybe just a bit less heartbreaking....????
It won't be long before we place DH too. I only wish we could go from hosp. to the facility. It would make us all feel better I guess. Starling, I'm thankful you finally decided to do this BEFORE you were hurt. Thats an awful way to have to try to survive. Now, thanks to risperidone now, we aren't dealing with that kind of anger or agitation. There is a huge amount of guilt and worry that things may be worse after he is placed..but we have to try something and additional helping hands are necessary now. I want to believe that DH will actually be more content in an environment where he receives more attention and has more interaction with people. Starling, I'm thrilled to hear that you've had what seems to be a blessing..He smiled!!
Seems like it all goes smoother if they're in the hospital for three days and then moved into the nursing home. Medicare paid for over 90 days in the nursing home. Jean had physical therapy every day. Now he still has some physical therapy but not as extensive. I know they having him walk each day with a walker, which he does pretty good. Starling gave me so much moral support and I'm trying to do the same for her. I guess I didn't realize the stress I was under when he was home. I have had several people tell me how much better I look. (not younger, just better. LOL) I actually enjoy going to visit him and holding hands. I guess I was lucky in finding this nursing home. I'm very happy with it. They have so many activities and music . Jean really isn't good at the activities but he loves music so much.
Sandi, Thanks for the response, I do know that it goes smoother when placed from Hospital, but at the same time I wondered if this disease would allow placement that required skilled care. When I asked about physical therapy for my husband the Doctor said it would do no good. Medication etc for what we deal with is not considered skilled care with Medicare. I do know that Nursing homes want a Medicare patient and will take them even more quickly when Medicare is involved than private pay as the NH reaps more monetary rewards with the Medicare system.
I would think that the Hospital stay would require more than just medication adjustment. As Starling as said they are using physical therapy with her husband and that would qualify him. She has a good Doctor, a good hospital etc. I am thankful for that for her but we must all be aware that not all Hospital stays and placement will qualify for Medicare skilled care with a nursing home transfer.
Jane ...keep in mind that the doctors know what to write on the hospitalization orders to get the patient admitted and satisfy Medicare and Insurance Companies. We all tend to 'overthink" and come up with reasons why such and such might not work.... especially if we have had to work out everything else for who knows how long. When the doctor says "I'm going to admit him to the hospital,..." trust me, they know how to make it work for all concerned.
Nancy B Yes, I do also know this but I guess as you say I "overthink" not all Hospital admissions end with still needing skilled care, most admissions end with going home and if it is a situation where we have had enough that is not really enough for Medicare to pay for a skilled care situation in a NH. If the stay is such that with the Hospitalization the patient is stable and only needs home care or safety care then boom no Medicare payment. I just wanted people to realize this. Sorry for the post.
Jane, the truth is I am waiting until until I am pushed and that is the truth. In Feb. when I was told by the Geropsych Clinic, our doctor, home health care , and others that I needed to place him I just could not make myself do it. It may be the next time something happens I'll be able to make that decision but I am not taking bets on it. I'm a stubborn ole girl.
Starling - I hit the same wall when I decided I couldn't take care of my husband anymore either. I hit a brick wall. Know that you are still taking care of him but you are doing it differently than you have in the past. As time goes on and you start to get your energy back and start working through the next layer of grieving, you will have more energy and be much more positive when you visit him. (((((Starling)))))
Bama, that is exactly where I am right now. Hang in there, maybe we won't have to do that. Two Doctors told me that I needed to place my husband over 3 years ago, I and only I will know when and if it is time. I am getting close.
Starling you have done the right thing. You will now be able to take care of your dear husband and also yourself at the same time. We count too.
Thank you everyone for the kind words. I got so exhausted during the hospital stay because of having to search for nursing homes that I'm still trying to come back. It didn't help that I was already tired from two weeks with not enough sleep. I'm still coming back.
Jane, forget about the whole "going smoother" thing. That wasn't the reason for the hospitalization. Although it is also true that it went smoother. But that wasn't the reason for going to the hospital. Nevertheless it is true that Medicare will not pay for a nursing home unless there has been a hospital stay first to make sure that a nursing home is medically necessary. And by the way, safety care is in itself a reason for a nursing home because no one person an keep a wanderer from wandering off. The caregiver has to sleep some of the time.
First of all he was getting physical, and he left the house in 100 degree weather with no shoes. I was at risk and the Alzheimer's Association social worker wanted me to leave the house for my own safety. It made more sense for HIM to leave the house, because the next time he did that he might not have been stopped by a kindly neighbor.
Second some of the time what you are dealing with is not just the dementia, but medical issues. They did a CAT scan to make sure he didn't have a blood bleed. They did a bunch of blood and urine tests to make sure there weren't other things going on.
Third, he was already on anxiety drugs. Turned out one of the drugs wasn't working on him enough to keep him calm. The other one was OK. There is no way for you to figure that out at home. They let the drugs wear off and waited to see what would happen. When he got angry and physical there were multiple aides to deal with him and then they tried just one of his anxiety drugs in about the same amounts I was giving them to him and it worked. One drug question out of the way. They admitted him because they were not letting him go home with me. It would have been an unsafe discharge. The Emergency room nurse basically made the decision he was going to be placed and everyone else just seconded her. I don't have her skills or her knowledge. She was right. Once he was admitted they used a different drug on him to be the regular one he will be on all the time. It took 3 days to figure out the right amount of drug.
Starling, how far do you live from the NH? I think we are going to place DH on July 26. At least that is the most recent target date.Have delayed it twice now..Just can't get everything ready... We live at least 45 miles away from the facility. My plan was to get DH settled and then find a small apt nearby. Now I'm thinking that I may need to find that apt. and get it set up before we enroll DH. I don't know how to think about having him that far away without being able to stay close enough to get there if necessary. Can't see worth a hoot to drive at night. Since he's going in for medical 'monitoring', I'm going to be spending some of each day with him..and will leave to 'go home' early. This may force him to adjust to being with others and adapt to the routine of the place.Sounds good in Theory..I guess. I was just wondering how far you had to travel to visit and how often are you trying to see your DH.
My heart and prayers are with you. When I first started reading these posts, your spouse and mine seemed in a very similar stage. So I always read with keen interest how you two were doing. It seems this relentless disease, while so individual, has universal aspects, too. I am in process of having picked a place for my spouse, and am investigating how to finance it.
Is there some sense of relief you feel, amid all the other emotions? The two feelings I am trying to balance now is relief and the overwhelming guilt.
You have heard from everyone, I say it too. You know it is the best for your dear husband. How to get that knowledge into the heart? Don't know.
I wish you peace..that elusive place that us caregivers seem unable to achieve as we make life and death decisions for those we love.
Starling, Thank you for the update and information. My question is this: If he is sent to the NH just because it is an unsafe discharge to home, then am I to understand that Medicare will pay the 20 days for skilled care in the NH?? or are there other things going on that will qualify him for the payment??? Just trying to learn about this.. I am trying to figure out if they call an unsafe discharge the need for skilled care?? Need to know these things as we approach possible placement.
Please keep us update on how Medicare pays for the NH Starling, it will help us all to learn what they really consider skilled care. I am sure if they give him physical therapy while there it will qualify him. Be ready to apply for Medicaid if you need to and if you need help I am here for you.
I think the doctors all know how to get around the nursing home and Medicare bit. I started the Medicaid application as soon as he was placed That was mid-January. It was finally approved the middle of June. I was doing the "happy dance". I don't have to pay the nursing home a cent. And, I can keep his Social Security and small V..A. disability pension . I just need to put aside $35.00 a month for his personal needs. My goodness, I would take care of what ever he needed. I'll just put that in his account at the nursing home. They do have to pay for their haircuts there. After seeing the last hair cut, I don't think he's going to need one for a while. He probably doesn't look in the mirror anymore. He never wore his hair that short.
Carolyn, I don't know what State you live in but I am sure that the only reason you were able to keep the Social Security and VA pension is because it did not fall above the guidelines of what you are allowed to have to live on as a Community Spouse. They only allow a certain amount and if the income is above that they keep the rest of it.
My on going question is not whether or not the Doctors know how to get around the Medicare issue, the Doctors can say unsafe discharge and true that will qualify them for Nursing Home care but it does not qualify them for Medicare to pay. Aside from all that I am just trying to get this in my mind for what might be in my future also. Everyone keeps posting that the Doctors know what qualifies them for a NH and I already know that, I am not asking that. Forgive me but just trying to learn here.
Starling: You and I are traveling the exact same road except that I am about a mile (three months) ahead of you. The hospital stay for my DW prior to entering the NH was one of the best things that could have happened at that time. The neuro/dr called is an 'evaluation', ie meds adjustments, etc. It was well needed and worked well. My heart goes out to you and I wish you God Speed and the best of luck. You will still have to figure out how to handle things with this new arrangement.
Bama: I know how you feel also. Been there. Sending you the same good wishes that I sent to Starling.
Jean fell twice in the six weeks prior to entering the nursing home. He was starting to take 'baby steps" on the stairs and walking.There's still no way he could walk alone now. They still walk him once a day with a walker but he spends all the time in a wheelchair.I doubt very much if he'll ever be out of it. He has a wrist band on that says "Fall Risk". I'm sure there was no problem with Medicare paying for him. He's 86 and also has spinal stenosis. I have no idea what happens if the person is able to walk very well on their own.
Carolyn, Ok, that is my husband, exactly, did your husband enter the nursing home after a 3 day hospital stay?? If so it sounds as if the walking him may be what they will call physical therapy and that would qualify him for Medicare to pay the 20 up to 100 days. I would say that is the only way they get around this with the disease we are faced with. It is so sad that they would not call what we deal with skilled care. You sure to have to have skills and I mean good skills that are learned along the way to deal with this disease.
I was also surprised when you posted that it was a 5 month wait for you on the Medicaid application, usually takes no more than 45 days??
My husband was a direct admit to the nursing home because there was no "medical" reason for him to go to the hospital. He can't talk, walk or feed himself but that didn't make any difference. Had to admit him to the nursing home and apply for Medicaid the same day. I was told that Medicaid was usually approved within 5 days. He was approved on day 2 (retro active to day 1).
Starling, add me to your long list of admirers here. Thank you for sharing the details with all of us so we can be there in spirit with you. And also for those of us not there yet you're providing such valuable information and inspiration.
Jean went into the Nursing Home in mid-January. The Medicare skilled care ran out the middle of March. I was told at the start that the Medicaid might take up to 90 days. It was approved the middle of June, retroactive to January. I'm presuming it was retroactive until then in order to pay for his precriptions. He always got his med from the V.A. The nursing home wouldn't accept them. Had to come thru their pharmacy. When he went into the NH the business office was to get him on the plan D drug plan, which she forgot to do. I had a $2,000 pharmacy bill hitting me in the face. Thank goodness, the Social Service Director got that straightened out and I didn't have to pay it. Yes, Jane, our doctor had him admitted to the hospital for three days. Then he went right into the nursing home. They took him by wheelchair transport.
Apparently, nursing homes want medications that are in the individual blister packs, and when I was considering a private pay memory care center, I had to factor in a very expensive increase in his drug costs. Instead of being on our great pharmacy plan..I would have to go with their pharmacy, and pay full price. That didn't seem fair to me, ..but apparently, it is common practice everywhere.
Nancy - I had been buying meds for my DW online in 90 day supplies. When the Doc starts trying other meds to solve problems, you get stuck with a lot of meds you can't use. With that, I started doing biz at local Walgreens where I got 30 day refills. The N.H. where wife is asked me to move to 1 of the 2 local pharmacies that deliver. They also fill the prescriptions for 30 days but fill a dispenser with a 7 day supply, keep the rest at the pharmacy and deliver full dispensers weekly. Trying to cut costs, I was asking the N.H. manager about this last week and she explained that having meds onsite and dispensing them to the patients is one of their biggest risks. By having only a 7 day supply onsite for all patients, they limit their risk. Given the legal environment we live in today, it makes sense. To my surprise, the delivered meds cost me the same as Walgreens cost.
When my sister put her hb in respite she would take his meds down to a local pharmacy that would put them in sealed packets for morning, noon, afternoon, evening, bedtime - whatever combo you needed. This was required of the foster home, VA and hospice when he went into respite with them. Since the VA meds were much cheaper, I think it was $15 a month she paid for it, was worth it to her over what they would charge to get them. That might be another option.
She liked it so well, that she continued after he would come back home. She said it beat setting up all them and I agree. With all the supplements we take it is a pain.
Carolyn, Thanks for your updated on the hospital admission for your husband. Do you know what the Doctor used as the admitting diagnosis??? Since he fell but did not break bones or a hip was it for obversation etc?????? Just want to be prepared if our time comes.
I would venture a guess that the reason the Medicare payments ran out in March was due to the fact that the physical therapy had reached its limit for him. It is very rare for a person to get the actual 100 days of skilled care in a NH that Medicare allows.
Jane, I honestly don't know what the Doctor used as the admitting diagnosis. I didn't even think to ask. Everything was moving at such a fast speed then and of course, I was upset.
I'm sure you're right about the physical therapy reaching its limit for him. I just figured he had 100 days but I guess it doesn't work that way. I've certainly been getting an education. I do remember telling DH a little fiblet when I took him to the hospital to be admitted. He couldn't understand why he was there . I told him that the doctor had seen something on his blood work that he wanted to check. He thought it was baloney but he didn't throw a fit.
Carolyn, thanks for responding. I have one more question. Since you are not sure what the Doctor's admitting diagnosis was would you care to tell me what you took him to the Doctor for that prompted the admission? maybe that will give me a clue. Thanks for your help
Jane, basically, if the patient was in the hospital and they did a medical evaluation and a drug adjustment and decided he needed skilled nursing, Medicare will pay for the 100 days. Please note, not 20 days, but 100. They pay different amounts of those 100 days and they divide it up into three sections with different co-pays depending on the insurance you have that supplements Medicare.
Getting him into the hospital and them on the right track requires "magic words." Ask his current doctor exactly what you need to say when you dial 911 and when you go into Emergency. I'm not giving you my "magic words" because you need his doctor on board. So ask him what they are. They aren't what I would have said, but they worked just like magic words are supposed to work.
Remember it was not safe for my husband to be at home with me. Not safe for him (and there is a police report from the previous day to prove it, not that it needed proving) and not safe for me either.
Getting the right diagnosis is not your job. That is the job of the discharge planner at the hospital and the doctors. They are also the people who will arrange transport. And they know exactly how to do it. You are stressing on something you don't need to stress over.
One of my first choices of a nursing home was 45 minutes away. I would NOT have moved closer. There is no need to move closer. He is currently 15 minutes away, but I would have dealt with 45 minutes with no problem.
I've got a bag full of medications they will not use. I've accepted that. It is what it is. And, truly, they are being careful and that is a good thing.
I will be applying for Medicaid, back to day 1 soon. I've got a meeting with the Medicaid coordinator this week, and we will get the paperwork started. They had me sign an intent of some kind before they brought him in, so I guess I'm OK with getting things dated. They will help me work everything out.
In this state you need back up paperwork for whatever you tell them, and that won't be here until next week. I'm taking the most recent paperwork with me when I go to the meeting and I got all of the balances of the things that change daily as of the day he was placed.
There is a second round of paperwork which is the actual application. I'll start working on that after the first meeting so I get what I really need and don't go after what I don't really need and so everything works out smoothly.
Jane, this is the doctor that both of us had been going to for about 20 years so he know us pretty darn well. He could see the decline in Jean and the stress I was under. After one terrible weekend, I called our doctor from work . All I said was that I thought the time had come. He knew Jean was at Day Care but he told me when I picked hm up I should take him right to the hospital. At first, he said to the emergency room. When I said that we'd be sitting there for hours, he changed his mind and said just to tell the receptionist "Fast Track". Evidently that is the magic word for fast admittance which it was. We sat down a few minutes and all of a sudden they were there with a wheelchair for him.
Starling and Carolyn, Thank you both so much for the information. I was under the impression that it would not matter with this disease unless a PHYSICAL problem surfaced that IF I had to place my husband it would have to be from home with us paying up front to start, no Medicare could be involved. This tells me that when and IF that time comes I need to approach our Doctor with at least a request for him to try to admit. I did not know this before. of course if Hospice is still on board then there would be no hospital admission but if they leave I would now know what I would do next.
Starling, I am still not sure it will pay the 100 days Medicare for you, if they stablize him in the NH Medicare will no longer pay. Keep us posted on this, it will be interesting and help us all to learn. Most loose the Medicare payment before the 100 day cut off.
When you apply for Medicaid, I would advise you to go straight to the Medicaid office and not go through the Nursing home for application, it goes better and quicker that way. Anyway, keep us informed step by step if you would.
Starling, you have been so much help to me over the last couple of years. I have found that you have a great strength and peace about the decisions you make. I pray that all of this goes smooth for you and your DH. take some time get your rest before you move on to the application process. Phyllis
Starling, Get the application process started as soon as possible. The payment will be retro from the time you first apply. It is important to start it as soon as possible, just like filing for SS disability.