My dh has had EOAD for 9 years; I had to quit my job to take care of him. He didn't qualify for SS, so we are living off SSI and are poorer than poor. He had a good life; did everything he wanted to do; was a pilot; a builder; many other active sports; and now can't do anything, not even watch a tv program. He has recently begun raging at me, to the point I had to have the law remove him from home; he is currently in the hospital for evaluations or whatever; but I don't want him coming home. I am only 55 and he is only 61. I have to get on with my life; I have to find a job;sell the house; a million things on top of his disease. I found your website months ago; but haven't even had time until now to surf it. How many of you have young spouses with this disease? Is a nursing home my only option? I cannot deal with the rages..until this week, we still had his guns in the home; if he comes back into the home and he sees the guns are gone; he will go beserk again! he is accusing me of things that aren't true. he is a gentle man under the disease. I just need answers and soon. thanks for starting this website.
2young, I'm happy you found this website. I really can't help you, but I would certainly talk to the hospital social worker to see what options you may have. And, if they get his meds adjusted, perhaps his rages will cease. I'm sure others on this site will be along to give you more help. Welcome to this rocky road.
2young--- If you are thinking Placement, it is probably past time. Right now, while he's in the Hospital, tell the Dr.s and Social Worker"He can't come home." Be clear, and don't back down. Tell them the house has to be sold (make contact with a Realtor). Ask what NH's take Medicaid and check them out. Lock into your mind that he needs more care than you can continue to do alone. You are and will continue to be the Caregiver in charge. Placement means there will be 3 shifts of several workers doing the hand-on care, you've been doing alone. These are words from a Caregiver who's been in your shoes--a near match. Both of us on SS (mine SSDI), him on Medicaid waiver. House entering Short Sale because Mortgage underwater. There's an altercation and Police take him to hospiial for medicatxion eval. I'd already,been setting up placement, but ALF put it on hold. He was on 2 waiting lists for NHs--for a year--no movement. When Hospital was ready to discharge, no local NH's had openings--he was going out of town--about 45 mins. away too far for me to visit, let alone comfortably advocate with. Was to happen on Mon.at 1 pm. At 10:25 Mon. there was a call. The NH I had hoped for had an opening. He went there. My hands were stil full, advocating for him, finding an apartment, moving, etc. But I had the peace of mind that he was safe and cared for. That made a huge difference. Keep comig here. I'm sure otherswill be along to welcome you a nd provide advice and Hug s.
2young, please listen to what Carosi2* is telling you. My husband is still in hospital over one month now.! He was taken away and admitted as he had a psychotic episode, even though he can barely walk he was throwing things and yelling. (This was because BOTH of us had NO sleep for almost a week, due to his disease, he is 64 three years in..)
I had applied for Medicaid before he was admitted, and it has now passed. The hospital told me in the BEGINNING< you may be responsible for the bill if it does not all work out. HOWEVER, as it was a State Hospital, they cannot discharge him if I refuse, and, even if I had to pay the bill I could be put on a plan for what I could afford, even if only $20 a month.
My guy is not violent, but I COULD NOT take care of him anymore, and as hard as it was, am so glad he stayed there. He is now going to be placed in an Adult Foster Home. As your guy is violent, it will be harder, but they will find something. Hang in and stick to your guns. You are in my heart and prayers.
2young--I can identify with your situation. My husband was dx at 60; I took care of him for 6 years at home. He was put on psych meds (anti depressants and anti psychotics) early on to help control behaviors. It got to the point where it was no longer practical to make medication adjustments at home and his neuro had him admitted inpatient to a geripsych unit. The first stay was 2 weeks, he came home afterwards, but the improvements only lasted 2 mos. The second stay was 5 weeks, after which I moved him to an ALF. That was 18 mos. ago and he's been on a plateau since and is cooperative and content.
So, based on our experience, I would say an effective medication adjustment is critical. If you feel that you've had it as far as caregiving in the home (and believe me, I can understand that), then talk to the social worker at the hospital, as Vickie said. Because of your financial situation, you should also speak to an elderlaw attorney about qualifying your husband for Medicaid. It is crucial that you do that BEFORE you sell your house, because under the Medicaid law, a jointly owned home isn't considered an asset. However, if you sell it and have cash, it may have to be spent down. Once he qualifies, Medicaid would pay for a nursing home. Assisted Living Facilities usually only accept private pay residents; I don't know about group homes.
I was very concerned that my husband's "young" age with AD would be a problem in terms of success at a facility. He is completely ambulatory and has lots of energy, paces a good amount of his waking hours. However, it has been absolutely no problem at all. The key is finding a facility where the care is good, across the board.
I commend you for your sacrifices in quitting your job and enduring EOAD for 9 years. You made a good move in finding this website, it was a sanity saver for me!
Welcome to my website. What an appropriate name you have chosen - 2young. For sure,there are many members here who are dealing with EOAD in varying stages, and many members who are or have dealt with your issues of rages and poverty. Myself included.
First of all, Carosi2 gave you excellent advice. As long as he is currently in the hospital for evaluations, be ABSOLUTELY FIRM in insisting that he CANNOT come home because he is a danger to you. It is the hospital social worker's job to help you find placement. While he is being evaluated, they will most likely change or add medications to calm the rages, but it's always an iffy proposition trying to get the correct meds. at the correct doses.
I know first hand how emotionally devastating those rages can be, especially from a man who used to be so loving and kind towards us.
You said he has had this for 9 years, which means you were only 46 when it started. I believe our member, Emily, was even younger than that when her husband started showing symptoms. What type of support have you had during those years? Did you attend an Alzheimer's support group? This disease cannot be managed alone. Let me start you off with some resources:
Discussions: Go to the top of this page and click "search". Write in EOAD, making sure the "topic" circle is filled in, then click enter or search. All of the discussions on EOAD will come up.
Information: Go to the home page - www.thealzheimerspouse.com - and look on the left side. Scroll down to the EOAD section - it has a yellow star. There are 3 blocks. One is general information, articles, and videos on EOAD. The one below that is a comprehensive guide explaining EOAD. It is excellent. The third is for young teens who have parents with EOAD. You did not mention if you have children at home.
More than anything, I want you to know that you are not alone, and you have come to the right place for information and loving support.
The ER nurse made the call. It wasn't safe for my husband to come home. If no one at the hospital has made the call for you, you need to advocate it for yourself. Find the social worker and the person who coordinates what happens when the patient leaves the hospital. They need to organize placement for you. You will still need to go and visit nursing homes and chose several. But they should have a list and they should already have given it to you. The list they give you should only include nursing homes that do Medicaid.
When you go to visit you will obviously be looking at how the place looks. Accept that it won't look like a hotel. But it does need to be clean. Then ask if they help with the paperwork. You will still be doing most of the work yourself, but I found that having someone who had seen the paperwork before start the process with and for me made all the difference. The County caseworkers were all kind and caring as long as I wasn't hysterical, and the one time I was a little off, I explained myself and we were back to kind and caring again. I still can't believe how easy they made it all go for me.
Do not take him home. It is already obvious that it is not safe for you to do that. Almost every placement I've ever seen happens during a crisis, including my husband's. It is what it is.
We are EOAD. We're nearing the end of this road and she is still just 61. Placement and working with the organizations doesn't go smoothly generally and you have to listen to how things work and try and get an understanding of what options may be available to you.
Good luck. I think you'll find that as you go through this you're going to need to talk and ask questions. I urge you to bookmark this site and get some of the help here.
2Young, you've come to a great place where you will get a lot of advice and help. May I ask why your DH didn't qualify for Social Security Disability (SSD)? He should have if he has a dx of EOAD. As mentioned above you should speak with the hospital discharge planner (typically a social worker) as well as the treating physician and make sure they both fully understand that your DH cannot come home because he is a danger to you, himself and possibly others. As Starling* mentioned they should provide you with a list of facilities which take Medicaid but you will have to do the legwork and look at each facility you think might be a match for your husband.
Your Area Office on Aging would also have information for you regarding facilities and programs you might qualify for which will help with costs and support. You can always hire a Geriatric Care Manager (google and you will find the website that has certified GCMs in your area) but they typically cost $100-$200/hour and most will want to do a geriatric assessment to determine the level of care you DH requires. That can cost upward of $250.00. I would exhaust all the free resources first before hiring a GCM.
LFL, I was wondering the same thing about the SSD. I presumed that 2Young's husband didn't have enough work under the SS System to qualify, because as you said, the EOAD dx allows one to qualify on the medical side.