I'm sitting here in Baltimore Washington Med Ctr with Jeff, now on day 4 since his combative and uncalmable behavior on Friday morning which resulted in a paramedic escort to the ER. I am expecting the neurologist to make rounds today, so I dare not even step out for lunch. NOTHING happens over the weekend.
This morning I did call the nurse contact at his ALF and express to her that I have no idea what should be happening, but that he's now on an increased dose of Seroquel (100mg given at bedtime) and I suspect a morning dose might need to be added, as I saw an increase in his edginess by 4 pm.
She sounded concerned, as I would expect, because he's fairly young and robust for a person in his mental condition. I am sure they'll want some assurance that his behavior is under control...I don't know where such assurance comes from. I know that a longer term geri-psych stay is often employed in that way. I guess I need to ask the neuro about that.
What happens if the ALF says "no way?" As I "joked" to my sister last night, my alternative is to bring him home and let him run away. Are there places that are more geared toward managing unpredictable behavior than an ALF is?
Maybe the meds will be fine, I don't need to worry about this, and we'll carry on. I just wish there were someone with a very comprehensive understanding of the various options whom I could talk to.
Emily, I hope they can get your husband settled so he can go back to the ALF. I don't know much about alternatives other than a nursing home that has an Alzheimers unit with a lock down. Maybe some one with more knowledge will come along and help you. Good luck and God Bless.
emily, we had a very similar experience 4 years ago right after DH was dx'd. He was admitted to a psych hospital (baker Act) because he had been violent towards me. After 4 weeks of "med adjustment" he was admitted to an ALF. After 2 weeks in the ALF he "eloped". They called the police who took him to the psychiatric ER because the ALF refused to take him back. After 3 months in a psych hospital for more med adjustment the attending psychiatrist at the hospital released DH to my care at home with the provision that I have a live-in aide. his arrangement has worked out for us so far.
My advice-call the ALF director and ask him/her point blank if they will take him back and if so what are the requirements. You should know if the ALF is an option or not. Don't be surprised if they say he cannot return because he is a danger to the other residents and they cannot keep him or them safe. If the ALF will take him back they will require a letter from the treating physician indicating that his behaviors are under control. That letter would usually come after an extended stay at a geri-psych hospital. Beware, if the ALF he was in won't take him back, probably no ALF will take him.
I live in NJ and there are 3 state run psychiatric nursing homes which take patients with behavioral issues. That was our only other option if the living at home arrangement didn't work out. I dreaded the possibility of admitting him to such a facility because they have a range of patients with uncontrollable behaviors and quite frankly I was concerned about DH in such an environment. Also, I was advised by our elderlaw atty that the cost would be $150,000/year.One of the facilities is called Ramapo Ridge and you might want to check it out on their website to see if there's a similar facility in your area. I know that they have several patients who have come from other states because there isn't a similar facility in their state.
You might want to contact the ALZ Asso and see if they can recommend options for you. You may also want to hire a geriatric care manager in your area who would be familiar with this situation and the available options. I hired one and she was worth the money she charged (@$100/hr). In fact I believe she was instrumental in advocaing for DH to be released to home.
I know these are very stressful times for both of you...having been thru this myself my heart goes out to you.
this is always a concern, that their demeanor changes are radical enough that a facility will kick them out unless they are compliant. i agree probably a long term geri psyche stay to iron the meds out is feasible. otherwise like jean says a lock down AD unit and they will medicate him enough to keep him workable in that environment probably. either way hes going to be medicated so try to iron it out so he can get back to a more pleasant living in the ALF. this sure came on fast emily. soo sorry. but it happens we see it here alot. marilyn and LFL seem to be the expert here in med adjustment stays. :)
Ok...so, Sunrise (the ALF) advises me that I must refuse discharge and request that he be transferred to the longer-term site. She says Lakeside at Bayview is a perfect choice for this, so that's what I'm trying to request.
Oh, I guess I forgot to mention that the N.P. on duty here was just trying to discharge him an hour ago, so I called for advice from the ALF.
So now I am waiting as usual, this time for the case manager to contact Lakeside and see if they can take him.
Emily, you know we had a good experience with Lakeside. You are experiencing the nightmare I was afraid of : "young" male dementia patient/difficult behaviors/physically strong. That is exactly why I held off placing Steve for so long. Here's my feeling--it's better to have Jeff go to a geripsych unit and get his meds adjusted, let them ensure he's stable, then return to the ALF. As LFL has pointed out, once a patient has been turned out by a facility they have established a negative track record and it's in their medical files. This can make other facilities wary of taking them.
Steve was never rejected by an ALF, but just based on his stay at Lakeside and something in their notes, I had the psychiatrist at one ALF do an 11th hour backing away from accepting him. Fortunately, another (better) facility had an opening, they took him, and it's been great since.
I had also thought of suggesting to you that you hire a geriatric care manager who is familiar with the facilities in your area. They will know the "inside scoop" and which ones are more tolerant of the more challenging patients.
Divvi--what a dubious honor LFL and I share on the geripsych stays!!!! But thank goodness there are such units.
Good idea. I will contact a geriatric care manager (I think I know the name of one,) once things get sorted out here. Someone from prereg. at Lakeside just called for insurance info (no, you can't ask Jeff, you'll have to talk to me...) so perhaps progress is being made.
I concur with what you're saying Marilyn. I dread the possibility of his having a similar episode again, and I'd vastly rather lower the risk now.
Okay...so we're waiting for a "psych evaluation" to be done at the hospital before Jeff can transfer to Lakeside. This will determine if he's an appropriate patient for their setting. I wonder how one passes such a test? I may not even be there if it's done tonight.
Emily, I am so sorry to hear about this. You have both been in my thoughts so often..... for this very reason is why I had to place Lynn in an Alzheimer's care nursing facility...our ALF'S would not take him.
My heart goes out to you and I will pray for a smooth transfer and better results for Jeff and piece of mind for you ((hugs))
Emily, can't help you onthe psych eval--Steve's neuro was in charge of the unit and was also the doctor that dx'd and treated him for 6 yrs, so he was very familiar with his case. I would think that they just want to confirm that Jeff's dementia symptoms/behaviors are occurring because of an organic brain disease (i.e. AD, FTD, VaD, etc.) vs something like bipolar, etc. Just a guess on my part, though.
Divvi--if you are saying you want to share your crown with us, nothing doing. Steve was a handful in the behavior areas, but I'm thrilled to say that I have had absolutely no experience in your "area of expertise". Seriously, someone here once posted that EOAD patients remain continent longer that later-onset patients; don't know if that's the reason, but I'm glad because I paid my dues handling other issues!
LOL! no i was suggesting that all honors associated with this work are 'dubious'.. including mine! no i wont share that with you, nor do i want part of yours! i luckily escaped the geri psyche stays but i have paid my dues elsewhere!!!!!!!!! in our case it should have been me to go get some med adjustments:)
I. too, have hired a care manager, but there is not much she can do when H refuses any placement. She has shown me different places and given me her insight but if he won't go that is pretty much the end of it. I really like her and found her a source of comfort.
To be honest, I have envied those of you who have the resources and the legal option to place. I thought, well, that is freedom.
I have also envied those who have homes that can accommodate care givers.
i'm going off topic, so emily, I just want to wish you the best!
ps- do many of you know each other? I've seen the same hospital/facility mentioned often?
abby--Marilyn, Diatron, and I all live at different "points on the clock" outside the Baltimore area. This is why the same hospital, in Baltimore, has been mentioned. I haven't met them but hope to get together with Marilyn once some sanity prevails in my day to day existence.
abby--apparently this unit at Hopkins serves patients outside of our state too--when Steve was there, I met people from other states; I guess it was the closest good facility for this type of thing. Re placing your husband: all I can say is I wish you strength--it is inevitable, he will eventually reach the stage when he won't know where he is and you will have more options. The difficult thing, I know, is staying sane yourself until you get to that day. There were times when I questioned how I could achieve that, but somehow, I did. And yes, I am thankful that we had resources to allow placement and before that, room in our home for help.
Divvi--I have thought many times that there is much irony in the fact that poor Steve is loaded up with psych meds (but because of AD has limited understanding of reality) and I'm the one who has gone without them (by my choice) and am dealing with the real world!
We are, in theory, waiting for someone from the psych department to come over and do the evaluation Lakeside requires before he can transfer there. Every day I get angrier and angrier at this stupid hospital, BWMC. It is probably typical, but the inefficiency and glacial pace at which anything happens here is turning me into someone I don't like very much. So...maybe we will transfer later today? I will not be even remotely surprised if the psych eval. happens too late today if at all.
Maybe. I called Lakeside (the transfer TO site,) and was told they'd call me back...no decision yet. What are they trying to decide? I'm really running out of ability to sit here. It is no wonder people run away and abandon disabled LOs. Not that I will, but I am beginning to understand the feelings of helplessness that lead to it. I might just need to go home for a while.
Lakeside said ok, and BWMC discharged him with 40 min to spare to get here by 5pm. Crazy. I don't know what will happen now. Thank goodness traffic wasn't horrendous.
emily, good news on the transfer; based on Marilyn's experience with Steve's stay I think this is a good step for Jeff and you. I am sure you know at this stage it takes at least 3-4 weeks to determine if the med combos are effective, possibly longer if the first combo isn't effective. That's why my husband's stay in the second hospital was so long-he had medical complications with one of the drugs (high liver enzymes) which had to be discontinued and another substiuted. It was a long road, but was valuable and necessary so he could either come home or go to an ALF (he was in a memory care section of the onw he eloped from) with a dementia unit. Marilyn is right-once they develop a negative track record even ALF's with dementia units may refuse to take them due to perceived/potential liabilities. I am very independent and used to makng decisions on my own, but I felt helpless when I was going through this situation with Rich. I felt I truly had very limited options none of which I wanted to choose. And none that I thought were right for Rich.
Okay divvi, I guess Marilyn and I might share that dubious honor, but I am happy to know you still hold your crown!
Emily, if you want to find a good geriatric care manager (you don't need to have an on-going commitment, you can hire for advice and Consultation) perhaps your Alz asso may know some or your local area office on aging can direct you. Also you can go to www.caremanager.org to find a certified care manager in your area. Like any other profesional service, I would recommend interviewing 2-3 people to determine fit and that he/she would be working in the direction you desire. I hired 2 before I got the one we currently have. I will be thinking about you and Jeff.
My lo's things are still at Lakeside (including her glasses) while we are in a room at the hospital where I can see the Burton Pavilion from the window. I've been here from 8:00 a.m to 8:00 p.m every day and she hasn't totally recovered from the severe reaction to the meds. She's barely conscious but so many physical things have improved. They were supposed to take her off all meds so her body could recover but they've just added more drugs. One arm is swollen, bruised and bright red from an IV infusion that didn't go into the vein. The other arm has so many holes from IV's that it is bruised. She moans and cries out every time they touch her. Everything is so invasive. I will say the Residents, the nurses, the techs have been wonderful, every one of them. The attending yesterday was insisting on the NG tube for feeding and when I said no, he was sarcastic and said so she'll die from malnutrion. I asked seriously how long she can go without food and he again sarcastically asked how long I could go w/o food. I spoke to her GP and he said to have them do a swallow test every day and not to worry about it for another few days. She will be fine with the saline. This a.m. I pulled the Attending aside and told him I didn't like how he spoke to me yesterday, that it was rude and condescending. I told him that my question about "how long" was serious and he was inappropriate, that I'm not stupid and I expect him to show respect for me and answer my questions. I got quite an apology and some explanations. Later today, the nurse explained that if she had the NG tube, they wouldn't have to keep poking her with IV's and she isn't up enough to see if she can swallow. She was very professional, gave me good reasons and I think she was totally honest in her opinion. However.....it was one thing too many. My lo is in pain, she's moaning, looks horrible, still has some dystonia and they're moving these semi rigid arms and I can't handle it anymore. I can't watch. I tried to compose myself but I walked out. Can anybody understand how I feel? I promised her no tubes, no Lumbar punctures, no invasive procedures and I've failed her. In my heart, I also don't agree that these were necessary. I can't watch it anymore. I'm going to call them tomorrow and tell them to insert the NG tube and I'm not going to go for a few days. I just can't do this and watch!!!
If I had stayed this evening I could have waved to Emily from the window.
diatron i think we all can imagine where you are in this. very difficult decisions. i would hope maybe you can find her living will or health care proxy and take a look at it. maybe it will give you the lifeline you need to stay focused on what her wishes are at the time she signed it. i know its a tremendous task to stay strong in dire times, but its exactly these reasons that we have our living wills made out prior to these situations. i have a DNR for DH and i have his wishes of no tubes, no artificial means to sustain life as well if there is no hope for recovery. with AD is there really any hope of recovery? even if we bring them back to a half way decent existence, its all in vain in the end. something else will come about to worry over again. i know this sounds harsh. i pray that i will have the force and love to stay focused on what my DH wishes are and not let my own pain and emotions lead me astray. all of us will have to address it at some point. it sounds as though you are mentally and emotionally exhausted. with reason of course. i hope you find peace with your decisions. its so very traumatic to have someones life's decisionmaking in our hands. divvi
Diatron-as I said before-the NG tube can always be removed if you wish. It will give you time to think things over without feeling so much pressure. I can well appreciate your agony.
The problem with the living will is that it says If my doctors certify that my death from a terminal condition is imminent, even if life sustaining procedures are used: I do not want any medical interventions used to try to extend my life. I do not want to receive nutrition and fluids by tube or other medical means. The wording is such that even though we know AD is terminal, her doctors obviously don't think it's imminent. So, I guess in reality I'm following her wishes based on that one word. I think I'll go with the NG tube and like bluedaze suggested, I can always have it taken out.
Nora--no. I don't do that! (text while driving.) Jeff is there. I left after helping him with dinner. His awareness of his surroundings, wherever he is, is pretty limited, but he does chow down. I am beginning to really hate plastic flatware and cheap lightweight plates and bowls as they are just not easy for a visually and dexterity impaired person to use.
I did feel like the psychiatrist who will be overseeing his stay has a real plan. This feels like tough but necessary love.
Diatron--I think taking some time off from the hospital will be a good thing for you. Can your brother-in-law or other relatives visit and keep you in the loop?
I just spoke to her sister-in-law and explained that I just couldn't go for a day or two and it's really important for someone to be there so that she will know we're there and so the hospital will know that we are watching and involved and expect the best. I asked her if she could get the other brother and anyone else in the family that she can to help out by going for a visit in the next few days. Yes, she will be there but the other brother said he can't go see her like that. I told her to tell him that if I'm not willing or able to care for her then they will have that responsiblity according to the POAs and documents. And, if I don't get help I might not be "able" so it would be a good idea to help a little bit now instead of me having so much stress that they have to take over all the responsibilities!!!! It probably won't work but it felt good saying that.
Glad you had that conversation. It's not easy for any of us see our LO's suffer, but I believe that part of being an adult is pushing ourselves to do the right thing, even when it's hard to do emotionally. I hate when people use the excuse of not wanting to "see someone that way" to shirk their responsibilities.
emily--On the eating issue, just a heads up. Last summer Steve was able to eat on his own, albeit with some assistance in locating things. Once he went into Lakeside, instead of just assisting him, an aide would sit and feed him. I learned that in facilities, this is their SOP--patients either eat independently or are fed, nothing in between. I had been trying to preserve his skills, that wasn't the philosophy in the hospital setting or at the ALF. I learned to accept it and focus on more important issues, but it was an attitude adjustment for me.
Interesting Marilyn...his first meal there was dinner, which arrived shortly after we got there. I helped him some, with opening the packets and cutting some things up. I don't feel like a typical hospital meal tray is set up to maximize an impaired person's ability to feed himself. Heavy utensils and a dish or bowl with sides would make all the difference. However, he does not need to be fed. Sometimes I pop a bite in when he's struggling and can't see the food. But definitely...I would rather see a presentation that enhances his ability to do it himself as opposed to feeding.
emily--you can ask for a week's worth of menus in advance and pick out the things Jeff likes. If items I wanted weren't on the menu, I would write them in and Steve received them. I would also get him extra ice cream from the freezer in the activity room and there were packs or Oreos and other munchies in a small lounge room in the middle of the floor. Steve had lost lots of weight and still loved to eat; nobody yelled at me for doing it!
Emily, you should also request a council with the dietitian. Explain your what you are looking for, most hospitals and facilities have a variety of service wear and utensils, but I have found I do have to request them. Our hospital no longer has a pediatric ward so they didn't have the small coated spoons that Lynn eats better with (he hates the metal) So I went and purchase some. They were marked and delivered back to his room. I also do all of Lynn's menus. If you don't see something Jeff likes, just ask. Lynn loves mighty shakes and magic cups, both are nutritional supplements and I feel important to keeping him well balanced with nutrients and calories. And of course the ice cream. :) They gave him the ice cream, but I had to ask if they had the others, they did, but no one offered them. Just ask.... Emily, how are YOU doing? ((hugs))
Diatron, me heart just aches for you. I have been where you are, but for different reasons. It is an inner struggle like no other, and like so many things, it is one that people just can’t understand unless they have been in that position.
I did decide to go with the tube, but he started doing better before it was placed. I may be faced with this again soon as he is not eating in the hospital. I almost lost him, and he is tired, and sore, and not very hungry. But he fought to stay alive, I wont just give up on him.
I too battled myself, IS this what he would want. His living will told me yes. Yes Alzheimer’s is terminal, but that doesn’t mean I will just give up on him. He has rebounded time and time again, and I am grateful for every additional day God has granted us with. He can recover from this and he IS recovering very well. He just might need a boost to help him through. I will do the tube if it comes to that. Not permanently, but to give him a boost while he is healing.
You can only take so much, I think it is very wise of you to take a break. It will help your mental state and perhaps with some time on the tube she will start to get stronger too.
Lynn is on Coumadin, so yes he is bruised. But, he is alive! He can clearly articulate if he is in pain, he hasn’t complained or winced once. Hard for me to see, but necessary when one is fighting for their life. A hint about helping her arms, we elevated Lynn’s arms with pillows. By the next day I could hardly believe how much better they looked.
Again, I am so sorry for the pain you are in…. ((hugs))
emily--Nikki's post sparked a memory in me--I did see a patient at Lakeview using the heavy utencils with rubber handles (sort of like the OXO products, if you know them). I bet she's right, if you request them, they'll be provided. I don't remember whether I spoke to a dietician, but they had provided a limited menu for me to choose from, and I asked (and received) the regular menu because Steve has no dietary restrictions.
I did grab the menu selection thing yesterday and circle it all up. Otherwise his selections are sort of random. Yesterday he got something he never would have ordered for lunch--cheesesteak. Nevertheless, I cut it into manageable halves and he gobbled it up and proclaimed it good. So, I'm not excessively worried about this.