Picked up my DH from Adult Daycare yesterday after work and told he could no longer stay. He has been grabbing, pushing and hurting staff members off and on for over 6 months now. We have been adjusting meds for a year but nothing works for very long. I work full time as a teacher and cannot afford to quit my job to care for him. He is at the stage where he no longer can do anything for himself nor can he be left alone. He requires 24hr supervision and care. I know the next step is a skilled NH but how do I manage that financially when he doesn't have long term care insurance? He does have social security disabilty benefits ( used that to pay for his day care) and a small disability insurance policy that pays only 5 years (only one more year to go on that). Talking with social worker today and hope she'll have some answers. Any advice from others in this situation would be greatly appreciated!
Have you talked to and elder care attorney? I am in the process of this now to lay groundwork should the day come I can't leave DH or he needs round the clock care that I am not able to do. My DH does not have long term care ins either because he was DX as diabetic when we got this ins for me. It was too expensive. If you don't have POA and DPOA you will need that too. Others with more experience will be along..wish I could be more help.
I have brought to the top for you, the discussion on Marilyn's husband when he was kicked out of Day Care. I don't know if it will help you, but it's worth taking a look at it.
I can't imagine how hard this is for you, Patt. I can't afford a NH either, but in this area, I am truly blessed. My DH shouldn't be left alone anymore either, but I have been sent a guardian angel in the form of a friend that lives out of state. She is moving in with us September 17, and she will take over Dave's care during the day when I work. It was prayers answered for both of us. She's retired, and is very much looking forward to it. She's been out to stay several times recently to see how it will work between them, and they get along great. Our condo is set up with 2 master bedrooms, and one of them has it's own entrance, so she will live there. Best of luck to you Patt....I hope it works out.
I was just wondering - does your husband attend a Dementia Specific Day Care or is it a generic Day Care? Generic Day Care staffs are not trained to deal with dementia behaviors. If that is your situation, can you switch him to a dementia specific day care while you do the legal and medical paperwork to get him approved for Medicaid?
Patt, I was wondering the same thing a Joan, was the Daycare for dementia patients only? Before I had to place my husband, he attended the Daycare at the ALF he is living in now. My husband also was abusive at times to the staff..still is at times, however, he was never told to leave, the aides all know when they are hired that there is a possibility they will be hit.
I had an elder care attorney re-do our wills, dpoa's and living wills. He wanted $6,000 to do the Medicaid. I thought that was way too much. The nursing home did it for nothing. I don't know about the state you live in but in Florida, they only went by my husband's earnings. He only has social security and a small v.a disability pension. I do not have to pay the nursing home a single cent and I can keep his ss and v.a pension to live on.
Patt K.--We've "been there, done that". As Joan said, there are several threads where I wrote about our experiences with daycare. My advice is to look around your area for another daycare, if one exists. My husband was "dismissed" from the prior program in 03/09; in 08/09 I started him at a new center. He has been there one full year, successfully, with NO CHANGES IN MEDICATION. What does that tell you? The current center is head and shoulders above the prior one--staff is educated, all procedures are set up to ensure clients succeed, and they are one top of everything.
You say he is on SSDI, I presume he is under 65. My husband's neuro told me (after the dismissal) that younger people with AD can become overstimulated very easily in a daycare setting, since their hearing and sight is intact. One reason I selected the current center is because it has quiet areas he can go to if the noise/activity gets to him. There are also hallways he can walk in if he doesn't want to stay with the group.
Does your husband display any of the problem behaviors at home (grabbing, pushing, etc.)? If not, then there's something going on at the daycare that he can't tolerate. Remember, with dementia, behaviors are a form of communication.
My wife was placed at Brookdale Senior Living Clare Bridge Manor after they assured me how secure it was an they could handle any violent or agressive behavior,she was there three days an "eloped" twice prompting a call from Clare Bridge to 911,since it happened over Memorial weekend noone with any authority was there until the following tuesday June 1st so they kept her doped up with Hadol til the director made her appearence on the first,the director called me an told me she was too violent an they would be taking her to local ER from which she would be transferred to psych unit at hospital fifty miles away for evaluation,interesting enough the director called about nine that morning an I just got a bill that she had her hair fixed on the same day,too violent but Clare Bridge but she could sit an have her hair done,oh by the way of the $5,288 dollars it cost to have her admitted they informed me she would be more than happy to refund $2144 leaving them with $3,144 for six days care,quite a profit I'd say,if they would have told me they couldn't handle anyone that was agressive or "violent" I would never have put her there in the first place,but the director an sales manager both lied thru their teeth an assured me how competent they were,just beware of the place you place LO an don't believe anything they tell you,ask current residents families what they think of the place,sorry this is so long but I'm still steamed about the "treament" at Brookdale Senior Living
As well you should be! Hb and I went to an open house at local nh last week. I was expecting a tour, etc., along w/the free lunch, musical performance. Nada. When I asked about a tour: Oh, just walk around and see the facility. ??? I wouldn't even know where I was and what was what doing that and expressed my dismay. Soon the marketing manager appeared and gave us a tour. Was lunch time; so folks who were able were in the dining room. Dementia area all beds were made and folks were eating in their separate dining room (some being fed). Looks okay, but I'd certainly talk with more folks before deciding to place there---if that becomes necessary. A friend's hb has been there 7 years, and she's pleased w/the care he receives.
Experience and friendship with a former Marketing Director at a Sunrise Sr. Living facility taught me that the Marketing People will say almost anything to get you signed up. Be aware they work on commission. Very low base salary - and once you're signed up, you will never see them again. They can promise you the moon. Tours are carefully scheduled, and all staff knows a prospect will be coming through. They deliberately have people outside their rooms, engaged in a ball toss, singing and or listening to music, or entertainer. Be very careful, pop in unannounced and insist on going through the unit. The time I did that, the Memory Care unit smelled like strong urine... At first it was denied _ "I don't smell anything!" she said. Then I noticed plastic trash bags at the end of several hallways filled with wet and dirty diapers. "OH, thaaaat!", she said, "Housekeeping hasn't been in this area yet!" The bags were filled to the top. It shouldn't be this way, but it's up to us to check them out several times before making a decision. Our friend, Mary, who lives in Canada, has taught us the lesson about how PRO-ACTIVE people CAN make a difference. She wrote to the city government, health officials, had meetings, and eventually, had to move her husband.
I agree "pop in" visits should be made before placing anyone as the visit we made was to a carefully planned event, but I wanted to get an overview. I asked for a brochure and was given two very generic ones not pertaining to this particular nh--not helpful. Several years ago my step-mother had a brother and sister in this nh, and she went almost daily to visit w/everyone, give manicures, read to folks, etc. Later, my dad was in this facility and was "kicked out" because he became mean. (He'd always been a disagreeable ole coot.) I lived out of state then, and brother placed him in another nh. When I made a pop in visit there, dad was dressed & lying on his bed w/no sheets or blanket. I couldn't rouse him; so left him a note on his nightstand that I'd be back the next day. Next day Dad's bed was made, he was up, dressed, alert and in his wheel chair, and he had my note in his hand. Hope I don't have to place him, but that's everyone's hope, I think.
Popping in unannounced is the best way to get the real story. And, even after someone is placed going at really odd times is always advisable.
When my Mom had to go into a skilled facility for some rehab (no AD) I found a good NH and then for the first couple of weeks I would go and see her at really strange times. A couple of times I went at 3 or 4 in the morning to make sure she was dry and comfortable and that the staff was awake!!! I would call on my cell from outside the door to get in (since it was locked) and I knew that the overnight staff must have wondered what the hell I was up to.
Patt, you may have to place him for a limited time until the behavior passes. Others seemed to go through this and it passes. The other option is in home care. After the behavior passes you could bring him home and then have the in home care.
Nancy B, thought you might be interested to know that the Director of Resident Care of the first (poor) facility has handed in his notice of termination because of the mismanagement and unsafe conditions there. He is an R.N. who has worked there for many, many years. (I met him in the new facility where he was working as an R.N. as casual replacement for one shift.) If there is anything I've learned over the past 3 years it is to look for a care facility run by the religious: Catholic, Lutheran, Baptist, or other. There is that added dimension of caring. My husband is at a Jewish facility now, and I see the respect and love that that culture has for its elders. I find it a privilege to have him there.
I do not post much but read often. All of your postings have helped me a great deal. My husband (62) has Alzheimer’s since 2007 and for about two years, has been going fulltime to a Day Center for early stage. He got kicked out last Friday as he eloped 22 times since Tuesday as it is not a locked facility. He has had some personality changes since early August but they seemed to be under control, thanks to the addition of Depakote (750mg am & pm). Just four days prior, the Center told me he was ok for their program.
I work full time, am 3-1/2 years away from full retirement, and the sole caregiver for DH. I was forced to take off this week to get something else in place. Tuesday, I took DH to a new center for people much more impaired. Thinking my husband could understand (yeah right), I explained at the new place he’d have more freedom to walk around. He seemed agreeable. As soon as we walked in the door, he said he would not go there. Kept talking about all the old people. The rest of the day he kept fussing about it. It really got me down in the dumps and all I could think about is “I’ve got to get back to work and he cannot stay home alone.”
He started on Seroquil today (25 mg am & pm). At the encouragement of friends and the New Day Center, we’re going to try it again on Friday and say they want DH to work there. Deep down I do not think that will work either. DH is still too aware of some things.
Any suggestions or words of encouragement would be appreciated.
Texasgirl, I really hope the Seroquel helps. Is the only reason the kicked him out because they couldn't keep track of him? Locked down or not you would think someone would be watching the residents! Is there any facility that can keep a better eye on him that isn't just for "old people"? I hope you have good luck trying to convince him that he will be "working there" The only other thing I can think of is if you could hire someone to sit with him at your home where he may be more content.
if he is a runner then a locked unit may be the only safe place for him. most facilities do not have the force to watch everyone every minute. it was one of the reasons mine never went too. i hope you find a way thats comfortable for you both.
The Day Care Center my wife goes to is not a "Locked" unit, but a few of the clients have a tendency to wander, including my wife. Those clients have a small button attached to their clothes. When they get near the door it automatically locks so they can't get out. Most of the time the door is unlocked. One day I tried to take my wife home without first taking the button off (it was under her sweater) so couldn't get out the door. I had to call for help. Now I check her each time.
Texasgirl--I did many old posts on our daycare problems. DH eloped several times from the first program; was then "dismissed" from another center (not because of elopment--which also happened), but because of behavior issues. He was already on Seroquel when that occurred. He was able to get out several times because he looked too young to be there (was your husband's age then) and entertainers, etc., held the door open for him! I then found a better daycare program that had more security--two keypads that required codes be entered) before reaching the outside world. He never was able to elope again, nor am I aware of any other clients who did so. They also worked with him when the difficult behaviors surfaced, and he was able to attend there for several years, right up to when I moved him to an ALF this summer. I think going to daycare may have helped him adjust to the ALF. because the activities are very similar.
P. S. I used the volunteer story to get him there and for the whole time (4 years) that he attended. The funniest remark I remember is when he came home from the first program and said "Those people don't know how to run a business." He was right--in a few years they went under. If you think your husband won't believe the volunteer story, you can also tell him he is getting paid. I even remember someone here who paid the daycare program extra money and then they cut a check to her husband as his "salary".
Thank you all for your concerns and comments. The button idea sounds great. I'm surprise the last day center did not use them because the facility was a little than one year old. My head is spinning and at this point I don't believe I can get DH any where near the locked facility no mater what excuse I use. We visited a Car Manger this morning and I told DH it was a friend I used to work with. DH was suspicious and a bit unfriendly in general conversation. Anyone know how I can zap myself out of this nightmare until it's over! I'm guessing not, because most of you would do it too.
DH has been on Seroquil for a week now (25 mg am & pm) and we are both much happier. I plan to try the day care again by tellomg DH he will be working there so I can get back to work. It was suggested to me that I have him admitted to have his meds adjusted, but since we all know what that means, I cannot to that becayse DH enjoys life, friends, family, and our dog too much. I am praying God leads us down the right path for both our happiness.
((Texasgirl)) I am glad to hear the Seroquel has helped. I also hope daycare works out for you.. sometimes all we can do is pray and hope me make the right choices. ((hugs))
texasgirl--a hospitalization for medication adjustment doesn't necessarily mean that your DH can't come home afterwards. The first time he was treated as an inpatient, my husband did. I met others there who were going home as well. Just know that 25mg is a very low dose, he may need more later on, stay in close contact with the doctor. Seroquel worked for 4 yrs for my husband before its effects wore off and he had to be put on Zyprexa. Keep us posted on the daycare situation and good luck with it...it was a godsend for me.