What a surprise I had today! I was called by my husband's daycare director to come get him. Another client was sitting in "his" chair--DH asked the other guy to move--didn't happen--so he physically tried to lift the chair and throw him out of it. The staff saw and yelled "no" and he stopped. When I got there, he was calmly eating lunch, and I was informed that he can't return unless he is medicated to be calm. This wasn't the first incident of aggression, but I was given no advance warning that he was on thin ice! On Tues. the same person called me and told me of other situations where he had hit or poked someone recently, and I immediately emailed his doctor and was told to up the Seroquel. I have asked for copies of the daycare's records so I can see if the incidents follow a pattern, what time of day, etc. But the director warned me that the records aren't complete (that's not a good sign, and also, not following the law, I believe). Not sure where I want to go from here--I surely think I should have been kept in the loop more and told that things have been escalating. A little voice inside my head tells me that they only really want to deal with the docile ones, not an otherwise healthy 64 year old who is more difficult to manage. I realize that neither the staff nor other clients should be put in danger, but some things like anger expressed verbally need to be kept in perspective when dealing with someone with dementia.
marilyninMD see if you can get a copy of A Curious Kind of Widow by Ann Davidson. She is telling your story. Yes-you should have been in the loop-but why waste your energy spinning wheels. If your husband's doc can't get him on the right meds to calm him down you won't be able to find any place to take him. Most AD patients are docile. FTD is a different animal. Seroquel gave my husband and extra year at home. When he did go over the edge I took a long time to place him because of violence and extreme exit seeking behavior. It is sad-reasoning is gone but intellect remains for a long time. Reading the book made me feel better about myself.
Thanks, Bluedaze, I just read that book a few weeks ago and loaned it to a friend. Right now, I have a headache and am so jarred by this, I can't remember that being in the book. Are you sure it wasn't in the first one--I never read that one. I agree that it may be tricky to get the meds in balance and that perhaps he has progressed beyond fitting in at daycare. His diagnosis is AD, not FTD, by the way. What I may look into is bringing help into our home--if the personality is the right fit--it might work. At least then there wouldn't be the clash with other people with dementia. It will be hard, though, to keep his mind stimulated all day without daycare.
MarilynMD/Bluedaze...when I read Marilyn's letter, I IMMEDIATELY remembered Anne Davidson's story of when the Daycare Center called her and also said "It is time"...because of his outbursts. One concern is that it only takes "one little whack" to injure another patient. I understand how you feel (that they should be able to "deal with more than the docile ones". But sweetheart, how would you feel if someone dumped your husband out of his chair and broke his hip? They have to consider the welfare of the weak and strong, together in one room.
That being said, we upped my husband's Seroquel. His outburts have stopped for the most part, but now he sleeps all the time. I haven't put him in a daycare center - I don't know why. I want to, Lord knows. I just cannot imagine him being awake there, since he stays asleep all day long here. .....but, that's my problem... The subject situation is right "NOW" and we have to work this out together.
Many memory care centers have day programs. Locally, they cost $60-$100 a day. I forget where you told me you lived, but maybe the cost of daily respite there would be less. They ARE required to keep records, by law, because they do it for all patients, they'd keep a chart on him. They are certainly more equipped to handle the behavior than - say - the local Presbyterian Church program that's available here, with volunteers working with the guys.
Nancy--This daycare is an Adult Medical Daycare program run by a nonprofit charitable organization. It is staffed by professionals--several nurses, a social worker, etc. That's one reason I chose it--because of the caliber of the staff. I do understand the liability/safety issues they face, and of course I don't want him to hurt anyone. I guess my concern is that they didn't give me any warning that they would throw him out the minute something like this happened. No one was injured, and in reality, I wonder why they didn't recognize that someone was sitting where he normally sits and try to move him before a problem happened. Fortunately, my husband doesn't act out just out of the blue. There are certain triggers--for instance--someone sitting in "his" chair--that provoke the behaviors. He also gets antsy when he sees lunch has been delivered--and they have devised a system to deal with that. Today, I think they just dropped the ball and didn't correct the problem with the chair in time.
So now I face the dilemma of where to go from here. I need to figure out how to get respite--I have no help from friends/family. Most of them work full time and the ones who are retired travel a lot. After dx we were together 24/7 for several years and it was too stressful for me without a break. I can't go back to that situation, so bringing in help is all I can think of. It's too early for residential placement. I think I mentioned on another thread--he's still fine around me and able to compensate well enough to still serve on the board of directors of a nonprofit agency! However, if I want to go out, i.e., to an exercise class, he doesn't want to go with but cannot stay home alone. Needless to say, this will curtail the few activities I have going on.
Oh Marilyn, I really understand. Stupid comment boxes here don't let me show how much I care and understand...because later, I re-read what I wrote and it seems cold anc too cut and dried. I soooooooooooooo understand your feelings about "one strike and you're out". That's not FAIR!!!! They should understand the importance of open communication...and you might could have prevented all of this by one email to his doctor much earlier.
And the issue about the chair is absoutely VALID~ Archie Bunker had his chair, my husband has HIS...that is not unusual. To begin with, "having a chair" is akin to "feeling at home". He had his "place" and others need to understand territorial issues. In a MC facility, one man has "his chair" from home in their living room. The nurse told me that everyone knows it is "his chair" (a recliner) and they never sit in it. I put that in my memory bank (ha ha) to remember when and if I had to place him somewhere. Which I hope is NEVER! Re: meal time...When I begin to cook dinner, my husband begins to look for snacks. He knows that food smells mean time to eat and he cannot wait. I've learned that and usually give him a cup of fruit yogurt or crackers and cheese - If I don't, he'll be in the pantry looking for cookies.
That being said, you have a husband with AD and his actions are not unique only to him. That's the point I was making. They need to understand that. I think they need to rethink their comments. Could you take a chair or recliner to their location for him to call his own?.. I think you should talk to the staff about this. They are not being very 'charitable!!"
This is what we have been told repeatedly by our social workers - Not all Day Care facilities specialize in Dementia/AD/FTD. You said that the one your husband was attending is "Adult Medical DayCare", staffed by nurses and a social worker, but are they nurses and social workers who specialize in AD? The Day Care most of the people in my group attend is dementia specific, and the staff EXPECTS difficult behaviors, and are trained to deal with them, including, of course, recommending increase in medications.
My suggestion would be to call the Alzheimer's Association hotline and ask for recommendations for Dementia Specific Day Care facilities in your area. 1-800-272-3900.
Nancy--No need to apologize--your comments were fine. Luckily, I cofacilitate a support group for the Alzheimer's Association with a geriatric nurse, and she was the first one I called. She explained to me the importance of "his" chair. He is going downhill--everything seems strange--the one thing he knows is where he always sits. This is common with dementia pts. Good idea with taking a special chair in.
Joan--Yes, this is a dementia specific daycare. My geriatric nurse friend wants me to go in and have a meeting, see if we can develop a new care plan to meet his needs since the disease is progressing, etc. She also gave me the phone number of the overall supervisor of the center, whom I have never spoken with nor met. What I need to ascertain is--if the meds are adjusted and he comes back--are they willing to work to keep him there? Or are they just more or less washing their hands of him?
As I was writing the above, the supervisor called me back. Her explanation of the lack of communication and my shock in what happened today was that it took them by surprise too. Usually they have been able to diffuse problem situations before they escalate. I ran Nancy's idea about bringing a chair in by her and she said fine. So the plan is--they will send me the records next week--I'll forward to the Dr.--see if there are patterns of behavior, times, etc. that can be addressed better by medication. He can then go back.
Anyone else with any ideas, please let me know! This is new territory.
marilyninMD. I feel so sorry that you are caring for both your husband and your Dad. My husband just started two days a week in dementia daycare three weeks ago. Last week there was already an incident that caused the director to phone our dr. He doubled Geodone and Depakote last Monday. So far, I have not seen an improvement. We just had an incident at home with pushing, wrist twisting, pushing and finger poking. I didn't want to phone the police because we just had a lost driving incident and they were here twice (a long story). Everything is calm now. My Alz Assoc contact tells me that since things are escalating so fast I should be prepared for the next step - placement. This is just devastating. I think that he is only in stage 2 or 3 and I thought that would be far in the future. Most of the time he is loving and kind and a good companion. I hope to keep in daycare for a long time.
Dee-I love Venice Fl. It is a favorite diving area for my east coast Fl. family. I've said it many times before but you might have missed it.Seroquel really helped calm my husband down for a while. If placement is looming it might be better to do while your husband can still understand a new location and new people. My poor husband went from facility to psych hosp to another facility. He never had a chance to understand what was happening. As a result he kept all his belongings in a box ready to go home. He was miserable and kept trying to climb out of windows. He actually did get out twice by walking out with visitors. This disease is so cruel.
Dee--I hope the meds do get your husband straightened out. My husband has attended daycare for 2 1/2 years now, and it has been a godsend. That's why I was so worked up about what happened today! It sounds great that the director of your husband's daycare phoned the doctor--were you the intermediary? Both the daycares my husband has attended dump the problems in my lap, and I have to communicate back and forth with everyone. I am willing to do that, but today, as the title of the thread indicates, it took me by surprise. I know what you mean about placement--I had hoped to keep my husband home for many years, bringing help in when necessary. Who knows what road this disease will follow?
The daycare director knows our dr and contacted him without my knowledge. My husband is upset that our dr released information about him. When the very helpful Alz Association contact mentioned daycare she suggested that it would probably enable me to keep him at home one year long than without daycare.
Bluedaze, Would love to meet you when you come to visit your east coast family. I think we discussed this another time. Now that I have some free days there is a possibility.
No, you aren't excluding anyone - except, Can I come too???? DH and I were married in Naples, son lives in Ft. Lauderdale now - would love a trip down to Venice - love it there! But....just can't travel with DH now. Awwwwww
We can dream, can't we. Actually a site I was on a while ago was able to put together a meeting every year in a different locale so folks could try to go. My daughters and I got to the one in Stuart Fl. It was great putting a face to the name.
I am so sorry to hear that your husband is going downhill so quickly. Please don't hesitate to call the police if he gets physical with you. Not to say that it's okay to get physical with ANYONE, no matter what their size, but someone as little as you could be on the floor in a flash before you know it.
Sid scared the bejeebers (is that a word?) out of me the night he started punching me in his sleep. I rolled over, got out of bed, and woke him up. I can't imagine what would have happened to me if he had been awake and done it on purpose.
It is so scary that they seem perfectly normal and kind one minute, and the next minute - BOOM! There is no way to keep up with all of it.
MarilyninMD - I have no advice because almost the same thing happened to me the first of this week, only the agency was going to pull my in-home aides because of falls. Blindsided is a good word. Seems like you said, we could have been given a little hint that there was a problem so we could see if we could fix it before they did something drastic. My problem is resolved, for now, but I have been warned that if the falls continue, they will pull the aides and can do so without notice. Hope you can get things worked out.
We don't sleep in the same bed, long story, but has to do with AD. There are times where we will "visit" each other for a few hours - just for sleep. The last time he was very restless and was disturbing me. I woke up just as he was getting ready to Karate chop me in my neck. I had to stop his hand. He was asleep, but looked awake. He had a dream that something was going to get him. So, no more little sleeping visits. It is sad. Be careful. This crazy stuff goes on in their brain while they are sleeping too. The doctor said it is better not to sleep together and didn't feel a need to change his meds since he is doing better during the day. So far, I agree with this plan.
Thanks, Edis. Now that I've had 24 hrs to think about the situation, I'm looking at it from a different perspective. I've had him in daycare because it provides a safe environment for him with activities that stimulate his brain, and gives me some respite time. That's the upside. The downside is that things happen there that upset him, and he acts out. Do I really want to medicate him more, as the daycare staff suggested, just so I can continue to send him to a place that upsets him? He is fine with me and with our friends. Perhaps it is time to find another daycare (if one exists) that segregates the clients in different stages of the disease, since he seems to have very little tolerance for those in later stages. If that's not possible, maybe it is time to transition to a hired aide or companion. If the aggressive behaviors occurred all the time, I could see increasing/adding medications. But since they don't, it just doesn't seem right to me. This sort of goes along with what Dagma said above--if the behaviors come and go, it may be better to make lifestyle changes before throwing more meds at the problem. Any feedback?
Marilynin, I feel for you. ((Hug)) Not one day care, not even the AD specific one- would take Lynn. Not one! It is sad that skilled staff would rather drug their clients than try to divert and redirect them as they are trained to do. *Sigh. If your husband is open to in home help, it can be a God send!! Keeping you in my thoughts, Nikki
Marilynmd-i agree taking him to a daycare that has a more specialized needs may be a good idea. i would take "his' chair whereever he goes, he obviously attaches himself to something that gives him comfort in strange surroundings. that is a little issue that can help him overcome hostility to others taking his security away. i am very surprised the professionals handled it so badly. if they know he normally sits in that chair and its a comfort zone, another individual could be coaxed to move without disturbing the peace. i think they were not using the 're=direct' process well. if they are doing their jobs there should really be no outburts or issues and they are monitoring the patients to step in before things happen. i hope you find another place or at least speak to them about his comfort and what he needs to stay happy there. if not inhome would be the next best option i do believe. hope it works! divvi
Yes, Divvi, my reading of the situation was the same as yours. The staff fell down on the job. On top of it all, I found out the poor man in Steve's chair is almost deaf. So of course, he didn't hear Steve telling him to move. At least the staff did pay attention when the ruckus started--if not, who knows what could have happened!
marilynmd, just a thought, it would not be past my thoughts to check out the professionals there and pull one you think would work for you on the side? i swear if my DH had issues like that and i had no recourse but to stabilize on meds or redirection--well in my opinion i would PAY one of them a tiny 'extra' to be looking out of DH and give him that extra attention to avoid any confrontations. in this economy? you bet one would take that offer.. and they could be reporting back to you weekly his pros/cons before you get any surprises. guess i lived in a 3rd world country to long. bribes WORK! see what you can do if he stays there. and get him a chair to his liking! maybe his name on it! poor guy..Divvi
Leave it to you, Divvi, to come up with a creative solution! I would never have thought of that. Tomorrow I'm going to check out another daycare--it is farther away, but I've heard good things about it. Will post what I find out.
to be perfectly honest i intend to do just this if i EVER have to place DH. i will try to single out someone at the facility to keep an 'extra' eye out for mine and let me know if things dont look up to par. i would of course give them some extra 'incentive' to make it worth their effort. you'd be surprise how well this can work..i did it with my dad (RIP)..he hated the place and was 100% in tact mentally =i gave a nurse on day shift 100dol a month just to 'keep' an eye on dad. she would make sure he had his meal and helped him eat if needed..once the word got out, i swear my dad got alot of extra attention:) i took donuts, gormet coffee, fruit, to the nurses stations when i visited. it helped but cash speaks volumes. its my way of getting what i need for my loved one..esp if they have special needs more than others. divvi
I make it a point to learn the names of all the workers and bring unexpected food gifts to the unit. I don't bother with holiday gifts because that's when the families come out of the woodwork for their yearly goodies.
Great advice :) Bluedaze, I too made a point to know all of the staffs name. Even know a lot of the residents names now. I bring goodies, and am always full of praise. The sqeaky wheel may get the oil, but a bitchy one gets parked in the garage ;) LOL
I was just told yesterday that my DH got agitated yesterday and tried to leave and grabbed onto a worker's hand and would let go. He is 6'4" and weighs 205 lbs. I was warned that he may be suspended if this continues. This was told to me about 3 weeks ago and I called his neurologist who upped his zoloft which did nothing. I was told to get him on Seroquel but now that I read this, I don't know if I want to but I have to work. I don't know what to do. I guess I will call his neuro again today and maybe get a referral to a geriatric psychiatrist which is what the center suggested. I wish she had told me sooner as we went to the neuro last week. I assumed he was fine as I began picking him up at 4:30 instead of 5:30 so thought all was okay. thanks for all the ideas.
Pompanosusan--I haven't been on the boards much since my husbands "dismissal" from daycare. Must say, it made quite a change in my lifestyle.
First, please go to the Bigtree Murphy site and read her advice on Adult Daycare. She warns people in our situation to have a firm understanding of how much "difficult" behavior the daycare will put up with, so that you won't get into the situation I faced (described at the top of the thread). On that site--she DESCRIBES EXACTLY WHAT HAPPENED TO US! The ADLO is transitioning to a lower level of functioning, starts acting out, and then WHAM, the daycare dismisses them. The caregiver is left with no respite options and dealing with the functional changes at the same time. This must be a common occurrence. She also says that daycare staff should alert the caregiver when they see that the client is transitioning to a lower level or having more difficulties. It makes sense--in Steve's case, he attended M thru F, all day. They certainly had a lot of exposure to him and had they alerted me to increased problem behaviors, we could have tried to address them instead of letting things build up to a climax!
For now, I have an aide coming in 20 hrs a week so that I can get things done outside the home. My eventual goal is to find another daycare that operates more like the type described on the Bigtree Murphy site. I think I have determined that the prior daycare was too small--it was basically one large room. Steve likes to get away to a quiet place at times, and that center really has none. His doctor told me that when the verbal skills start to go, they become overstimulated by a lot of people talking, and if not able to escape, will act out. I think this was basically the problem.
So, in retrospect, I recommend you try to really analzye his behaviors, with input from the staff. Do they happen at a particular time of day? With a particular staff member or client? Does he need "down time" and is there a place he can spend some time away from the group? I just read last night that people w/dementia can't always tell us what they need, but oh how they show us with their behaviors. We just need to be smart enough to figure it out!
Well, to use a metaphor, my husband is "back on the horse". After taking the summer off from daycare, we've had an aide 20 hrs a week. She is now on vacation for a month, so I decided to try another daycare (3rd and last one)! This place is larger in square footage, the staff seems more professional, and they have clients with dementia. Once again, there are few in my husband's age group (64). Instead of Mon thru Fri, he will only attend Tues and Thurs, and I'm doing the transportation myself. Today was the first day, all went well. Wish us luck!
Oh sheez......Marilyn, definitely hoping it goes well this time. I just read this whole thread for the first time. Why oh why does everything have to be so damn difficult and exasperating just when we need help the most and treatment from the people we count on the most?????? I remember when we were living in Northern VA I was in a support group with several women who had their husband's in some kind of care and I was shocked that out of the blue they might get a call to come and get them and they would sometimes have to leave their jobs and scramble with what to do!!!! We have them taken care of because we can't and yet they can just send them back to us. It's frightening and frustrating.
terry--Don't know if you've ever considered daycare--if so, there's another thread about adult day and younger clients--58 to 62?--that's really good to look at. I gave a lot of information on what I'd do differently if I was searching for a daycare now, based on our experiences. "Shocking" is absolutely the right word to describe the phone calls. Actually, a friend of ours said it best about Steve's dismissal--he said "It's like throwing a sick person out of a hospital." I agree completely. But like anything else, daycare is a business, and they are in it to take in the most income with the least effort. I am finding it's the same thing with the assisted living facility where my Dad lives, but that's for another thread.
yes, Briegull, it is working beautifully. My first impressions of this center have only been reinforced over time--they are so professional, every detail is well thought out and there have been no negatives. I have never received an alarming phone call, Steve hasn't had a bad word to say about it. Now, I also realize that since he is now firmly in the middle stage of the disease, he has less anger and is seemingly happier most of the time, so that may also have played a part in the success.
I posted this on another thread, but I think it bears repeating. His doctor finally told me that EOAD patients can easily become overstimulated and act out because their intact vision and hearing, combined with what's going on in the brain, just makes it all too much to bear. It is actually easier for an older person, who has lost some vision and hearing, because then there is a built in "filter" of some of the outside commotion and their brain doesn't have to cope with as much. I think all daycare programs should be aware of this and develop special procedures and quiet areas for EOAD patients.
Thanks MarilyninMD.. I'm readinggggg.. I have an idea about getting started at the facility. DH has a former associate who is a resident at the facility.. I have talked to the day program person about the possibility of coming to 'visit' Bill for a little while. She encouraged us to visit. I'm working on gathering up the guts to do it. My own self consciousness about it is the problem. yikes.
DH doesn't know that Bill has alz. or that he's been a resident of the facility for a couple of years.. I think he might 'remember' that Bill was suddenly 'hospitalized' for some unknown malady..but not sure. However, in the local paper there was a thank you note from his family and an address for sending cards.. Anyone aware of the name of the place, immediately was aware but I suspect DH will think this is either a nursing home or a hospital.