I am posting earlier than usual tonight. Charlie remains in the psychiatric ICU at WVU. He has slept exactly 3 and 1/2 hours in three days. They mostly keep him in a "merry walker" to keep him from falling and have diapered him (for their convenience I am sure as this was not necessary at home). I am scheduled for a "family session" tomorrow at 1:00 to try to decide the future. I have been asked several times if my goal is to bring him home. I was called twice today by doctors who wanted to know if his increasing falls and trouble walking were the result of the recent bad fall he had or from progression of his Supranuclear Palsy. Good grief, that is why I let them put him in the hell hole so they could tell me what was going on. My goal is to bring him home but I have to wonder if that is a realistic goal. He is 6' tall and weighs 200 pounds. He falls 2 to 3 times a week (sometimes he falls that often in a day) and he is having more trouble helping himself help me to get him up. My head tells me that it is probably time to put him in a facility but heart tells me that I would like to try to bring him home, just one more time. But can I keep him safe and myself sane. Any and all input appreciated.
I understand where you are. Doctors were calling me when Bill was in an excellent psych hospital asking what to do. They complained that he wasn't responding to treatment. Was I sure of the diagnosis. I would have a fit trying to explain that he doesn't have AD, but FTD. When I refused Haldol they threatened to discharge him because I was blocking treatment. Now-as far as bringing Charlie home-I would suggest having a good back up plan and bringing him home on a trial basis. Really sounds like he is more than you can safely handle. Many good thoughts are coming your way.
My husband only weight 165# and I cannot get him off the floor except by using a transport belt and his help. If he is unable to help himself by getting on his knees and climbing up with a chair I cannot not move him.
Being realistic sometimes doesnt go hand in hand when the heart is concerned, as we well know here. if you bring him home can you have some inhome help come during the week to help with his care? and maybe the merry walked isnt a bad idea for home either if its needed and keeps him from falling. i pray it works out for you to bring him home but if it doesnt know he will be well looked after if you decide to place him. divvi
Jumpin' George Almighty!!! I must be soooo naive because I thought the guys who went to school and make the big bucks were the ones to go to in a situation where you want to know what is wrong and what to do to make it right. They call you and ask about the diagnosis? I'm dumbfounded. My heart goes out to you. And all of us also because we all have the same thing only different.
jules=I was trying to work at my job as a home health nurse with my cell phone in my lap because of the barrage of calls. The only good thing about it is that I could make sure than my husband got the proper care.
ehamaliton, do what your heart says is really the best for both of you and make the appropriate plans. My DH has been in a psych hospital for almost 3 months now and he was due to be released yesterday until his blood work showed very elevated liver enzymes (most likely from the Depakote). When he first was admitted to a psych hospital after assaulting me, no one would agree that he could come home, even the Geriatric Care Manager I hired. Long story short, that was the worst decision I ever made. If you think it is best for HIM and YOU, get 24/7 care, rent or puchase a merry walker and bring him home. Only you truly know what's best for both of you. And if home is the right place, fight to make it happen-if you don't know one will. on a personal note, get him out of the "hell hole" as soon as possible. My DH went in as a physically very healthy 58 yo with FTD. He is now a 58 yo with FTD, a constant rash which will not go away, eye problems, heart attack symptoms and serious liver problems, all w/i 3 months. My consultating psychiatrist, an expert in dementia said after he was originally admitted "you know, they are going to kill your husband". Don't be alarmed, just do the rght thing as quickly as you can and demand your rights. Thoughts and prayers are with you....keep us posted.
I have a question which may show my ignorance ... but ... if one of your husband's main problems is that he has trouble walking and falls, will he receive the care he needs in a facility? It just seems that they don't have the staff-to-patient ratio needed to keep a close eye on everyone, and I hear so many stories about falls in nursing homes. So the alternative seems to be restraints of some sort (belted into a wheelchair, for example). Maybe, if you can afford in-home caregivers, and the merry walker and any other equipment that can be used to help move your husband as needed, you can help him better at home than in a facility. ???
The good thing about Bill's facility is that most residents are in the day room where all can be monitored. No long halls and you can hear most everything going on. After many false starts I am very happy with The Broadmoor.
Hello all and thank you for all the feedback. God willing Charlie will be coming home on Monday. They did start a small dose of Depakote in addition to the Seroquel and he is sleeping (better?). Slept 3 1/2 hours last night. I asked if he could be moved from the "hell hole" to a geriatric unit and they told me that they did not have one and the only place that they had for dementia patients was where he was. I told them that in that case, I wanted him home ASAP. We finally agreed that he would stay through the week-end to give me time to "Charlie proof the house". I am going to secure the outside doors, install a bed alarm and remove some of the bigger heavier pieces of furniture to clear some pathways. I will accrue 5 weeks vacation, 12 sick days and 4 personal days on the 1st day of January. I work for a wonderful social services agency who is all about family. They are flexible. If I have too many sleepless nights, I will simply take a day off and sleep while the daytime caregiver is here. If that runs out, I then have 12 weeks of FMLA which will hold my job and keep my medical benefits. In the meantime, I will be touring long term facilities, talking to an elder lawyer and make sure that things are in place so that when the time comes that he must go, all will be ready (everything but me that is). I'm sure that I will need all of your help to help me make this fall into place (of maybe I will fall flat on my face). Wish me luck.
Hospice might be worth trying. It doesn't cost to see. I am sure they would do it here for Parkenson but not sure about AD but I would think so seeing the condition he is in.
Actually the walking has improved somewhat. Oh, it's not great and with the PSP it is going to get worse, but for now it seems that part of it must have been the effects from the bad fall he had that night outside and he was stiff and sore. He was angry at me today. Had to be at hospital for family session. Had the session first then went to see him. He was lying down for an after lunch nap but was not asleep. Walked up and said "hello there sweet cakes" He reared up, swung his arms and shouted "NO". Son walked up said "Hi Dad" He waved his arms and shouted "NO". Laid back down and covered up. Greg kissed his cheek and told him he loved him and left. I tried to kiss him "NO". After a couple of minutes I kissed my fingertips and pressed them to his cheek, no response. Did it again and again said "I am going to kiss you one way or the other". Got a slight grin. But I knew that when he is agitated like that, less is best so I walked around to the other side of the bed behind him, leaned over and said "I know you are mad at me for having you here but I love you anyway. I'll see you soon." Called back after I got home and they said he had been calm the rest of the afternoon and had gone to bed shortly after dinner. Maybe he will get some sleep tonight. I miss him. Looking forward to having him home.
Visited with Charlie most of the afternoon yesterday. He was sleeping when my daughter and son dropped me off. He woke only briefly and did acknowledge that he knew they were there. He did not seem angry with us has he had on Thursday when we went for the family session. The kids left and I could see that he was going to go back to sleep but I felt that he needed to know I was with him. The bed was small, but I got in behind him, cuddled up against his back and put my arm around his middle. I actually fell asleep and we napped together for nearly an hour. Finally got up and I sat with him while he had his dinner. Visiting was over at 5:00 and I went down to the lobby to wait for my brother who was picking me up. It was snowing quite hard AND there was a football game at the stadium next to the hospital. Brother finally called me at 5:30 and said that he was stuck in traffic and didn't know when he would make it to the hospital. A security guard who is also an Army Reservist overheard our conversation. He asked if he could take me somewhere. I put him on the phone with my brother and he told my brother to pull over out of the traffic and wait and that he would bring me to him. We arrived at the appointed spot in just a few minutes as getting OUT of the parking lot was not a problem, just getting in. I do not know the young man's name but his has my heartfelt thanks. Charlie is coming home tomorrow, Lord only knows where things will go from here.
I may have missed some information...what kind and how strong are the medicaitions you DH are taking? My husband was having some bad falls and it was finally asceretained they were from antipsychotic drugs, ativan, buspar, and lexapro.The Ativan was very bad for him but combined with all the drugs he was on, he was drugged constantly. This may not be true of your husband's condition but just info for you.
joyful, the only problem I have had with DH falling was when we were trying to change meds or forgot to take one sometime ago. I think that was all med related. However, my DH is getting pretty weak. Example is in order to get in bed he climes in on his knees and then turns to lay on his back. He cannot seem to move his body once he is laying down. This is worse on my bed with a 3" foam pad on the mattress. It would help if the bed was closer to the floor but he seldom comes to my bed because it is such a chore to rearrange himself. I have to cover him. I am dreading the day when he cannot support his weight.
Perhaps weakness is causing some of the other AD patients falling problems.
joyful, you're new! Sort of ... it looks like you may have been lurking for a long time. Yes? Welcome to our little family. I'm glad you decided to start posting!
joyful, is this joyfulnoise from the 'other website"??? you had a stroke? if not , i apologize, i knew someone else that had this name too. from another alz site.
either way, joyful glad you joined the group! divvi
Sorry , about the name...I put it in inadvertently but it has been carewife in the past. I would like to go by jo yful in the future as I am not a caregiver in the strictest sense now that my DH is in a nursing home.
The name joyful is a name I use to remind me of a dream I had relating to my sweet husband and his ordeal of Alzheimer's. In my dream, God spoke to me a verse from the Old Testament of the bible. It is from the book of Psalms 30:5....For His anger is but for a moment, His favor is for a lifetime, Weeping may last for the night, But a shout of joy comes in the morning. I hold this verse in my heart and rely on its promise meaning that s ome day my husband will be restored to himself and we will once again be together. Not in this life but in a future one. i am still mourning and am sad a great part of my waking hours but I try to be joyful for our ultimate destiny together.