Yesterday when we got to my husband's day care he told me he was never going there again. When I returned to pick him up five hours later I told him we would be coming back tomorrow and he said, "NO".
There just wasn't anything to work with. In addition I realized that I had been on the road driving for over 2.5 hours on every day that I took him there. And that is too much driving for me to deal with on a regular basis. I never actually felt much respite on the three days he tried day care out. I did get one lunch with friends and did some shopping, but in the long run it wasn't working for either of us.
So sorry it didn't work out but I agree that is too much driving. Sounds like trying someone coming in might be something to try. Is that an option to try?
Starling: I am sorry it didn't work. I was thinking about you since we kinda started daycare on the same day and wished each other good luck. I am doing two days per week and having mixed results. When I pick her up, she seems to be in a good mood and tells everybody goodbye. About half way home, she starts crying and doesn't want to go back. But, the next morning, she goes back without putting up a lot of resistance. She says she doesn't know why she feels the way she does, and that is probably true, so I will have to try and sort it all out.
dean, if he had been that way I'd have kept going. But he not only refused to go again in the morning, he was still refusing in the afternoon, so I gave in. Your wife seems to have mixed emotions about the whole thing. He didn't.
And it really was too much driving. I was making two round trips each of those days and tried not going anywhere near home, but to get someplace interesting to spend the day involved just as much driving.
I'm sorry it didn't work out as well. My husband did the same thing, he wasn't going back again. I just never tell him until we are on the way to the ALF. He still thinks I'm trying to have him killed but I know he is doing well there. I just try to ignore it. It is like having a 66 year old '2 year old'.
Starling, it may not be the right time for your husband's daycare just yet...give it about 6 months or so & try again. Is there another place to try? We actually went one place where my DH said "no way" and then 18 months later, to another place & it went well & has been for nearly a year! We go 3 days a week and he never says "no" about going. Perhaps it's just too soon for your DH...Maybe "in-home" would be a good thing to try too. Actually, during that 18 month difference in places, we had in-home care/help for about a year, 3-4 times a week for about 5-6 hours a day. The advantage to going "out" is that your DH will hopefully get into a "socially active" climate vs. being at home. just some thoughts...do hope it works out for YOU!!
Will I try again? I might. But I realized that I HATED driving more than 2 hours in one day. Day care might not be for me.
The woman I have hired to clean the house is here for the first time. He got a bit agitated, but is pretty much OK with it. I've given her the run of the house. We are in the computer room. When she is done with the rest of the house we will move out of here.
I NEED the help with the housework. I haven't been able to keep up for several months now. But the main reason she is here is to get my husband used to having people come into the house. First a bunch of handymen. Not the cleaning person. Next in-house companions so I can get some respite. I'll ask that the companions do some light housekeeping as well.
Starling, it's disappointing that day care didn't work out, but it doesn't sound like it was a benefit to you anyway, with all the driving. Hopefully this next step with the cleaning person will work better for you both.
The house is clean. The house is clean! Did I tell you guys the house is clean and it feels AMAZING!
And he was OK with it. He kept trying to help her and kept trying to put away our vacuum cleaner. But she dealt with it. She will be back in 3 weeks and then every other week.
I realize now that I've been working on this stuff for months because we didn't get anything fixed for a couple of years. It is very possible he will accept a companion in-house person until he actually needs someone to supervise his showers.
Starling: Sounds like you are getting some helpful advice. I think it is wonderful that we all understand each other and can offer helpful suggestions.
However, as usual, I spoke to soon. We had a terrible morning this AM. She didn't want to go to day care and just refused to get dressed and comb her hair. It got ugly at our house (Sorry Joan), but, I decided that it was going to happen and I forced (verbally) the issue. The alternative would have been for me to stay with her all day and I have to do that for the next three days. Anyhow, I prevailed and she was ok after we got there. I really think that she is better off around other people and in an atmosphere where they are provided with activities and directed entertainment. Seems to me that she fits in better, because, when just me and her are here all day, she gets bored.
Another situation is that almost everytime we leave the house, she thinks that we are either going to the Dr or to Church. When that happens, I just don't tell her otherwise until we get to where we are going. The other day when we drove in to the day care, she ask me if she had been there before and I told her yes. Maybe her sometimes not remembering is helpful to me also.
I am glad to hear that you have help coming in. I do too and my DW has accepted her and the house is clean. Maybe you and I are the only ones here that appreciates a clean house as much as we do.
Sorry to be so long winded, but, I have had to work on a trial and error method and somethings work and others don't. But, never give up. They are all against us.
CLEAN house is good!!! I enjoyed the luxury of that so much when we had our Home Instead person. She really did a remarkable job and I appreciated it so much. DH liked her, she was funny, loud and could joke and laugh right along with him. It was a very very expensive two days a week but worth it UNTIL, unfortunately she had so many personal issues I couldn't actually depend on her ability to come or stay at any of the agreed upon times. I think I could probably hire a general cleaning person to come once a week maybe and do some of the same things.
However, Starling, I'm so sorry that the daycare didn't work out. I'm seriously going to try to take DH after the holidays for one day a week or for a good part of the day.. We live about 50 minutes away, depending on traffic etc. So I'll spend nearly an hour on the road to take him and etc. My plan will be to set that day for grocery shopping and any appointments or errands. I might have mentioned the day we visited there was an Elvis 'show'..DH loved it. I have to hope he'll be willing to participate for a little while at least. I don't know if iits best to start with a full day or ease into it with a few hours at first, then longer if he's having a 'good' time. But if he decides he won't go...well I've seen parents DRAG their children into our school..well this kid is way too big for draggin!
I think my ultimate goal is to move closer to whichever facility we are going to use for daycare or for placement. Thats lofty right now but it isn't helpful to be driving driving driving most of every day either. We'll see.
My spouse with AD refused to go the day program. He went once and had a good day according to staff and he was quite talkative and upbeat on the ride home. The next visit never happened because he would not cooperate and became belligerent. We have been working with an an agency to have in-home help. After a few starts and stops, we finally had what we thought was a good match and when the person came with the agency director, my husband "threw them out." He just says "No," to everything adding that he doesn't need anyone and just wants to be left alone. I don't allow myself to get into arguing with someone who is unable to reason. I know he's scared and upset about his declining skills. He really cannot perform any ADLs without assistance or total help. He is unable to recognize the toll that 24/7 caregiving has on me. I am exhausted, depressed and have my own health issues. I go to Alzheimer's support group and the advice to go to day program and have help at home for my husband is so frustrating. My husband is 64 and I am 61. Our children are in their thirties, have jobs and families and live 30min and 50 min. away by car. They help when they can on weekends/vacations and have responded during crises. How do I get my husband into this next level of care when he won't go or accept a caregiver? I am thinking of letting go of the housecleaning services every other Saturday (while we go for breakfast and or the barbershop) and having a housekeeper/cook a few times each week so that there is someone in the home. I need help now.
jersymama does your husband have a specific diagnosis. Hopefully he has been seen by a neurologist. Pharmacology is our friend. Is your husband in antidepressants or mood stabilizers. Keep popping in to our site and you will be getting more ideas. You are in a pickle.
jerseymama--have you tried telling him that he is a volunteer worker at the daycare or that he is actually getting paid for working there? Use the search engine to find the other threads on daycare. I remember one poster who said she actually paid the daycare program extra money to give back to her husband in a "paycheck". Without a cover story, very few would willingly cooperate in the early stages of the disease. That, plus bluedaze's suggestion on medications, may put him in a better frame of mind.
Welcome to my website. I am also 61, and my husband is 67. What you have described in your husband and the Day Care situation is extremely common. I know so many people who have been through this. Screaming, yelling, trying to get out of the car on the way, fine once they are there, and then screaming and yelling when they leave that they hated it. Difficult as it may be, it takes a "tough love" approach. As long as you know for sure that the staff is experienced in handling dementia patients, and that he definitely is fine and well cared for while he is there, you'll have to learn to ignore the protests and leave him there.
However, the "volunteer" or "going to work" approach that Marilyn mentioned may work before you get to the point where you just have to drop him off while he's protesting.
I don't know how much you know about this site, but I want to welcome you and tell you that you have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a new "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
My husband went to day care three times. On the morning of the third time he told me he was not going "there" again, and then went in and was perfectly behaved. However there was no question that he was not going "there" ever again.
Some people have good luck with just taking it for granted that they are going to go. Some people, like me, accept that if I force the issue there is going to be violence, and accept that it is not going to happen.
I haven't tried the in-house help yet. But I've had someone come to do the heavy cleaning, today, for the second time and that has worked. I've also had men come in to do handyman stuff for several months now, but not, obviously, on a regular basis. The cleaning is going to be regular. Maybe in-house will also work.
My husband does not yet need ALS help. It is possible that you will need to think about placement to get the help you need. If you are at the end of your rope, and he needs ALS help, that might be what you need to do. But before you do that look into hospice, because if he needs ALS help for more than two life issues, you might just qualify.
When my husband (65 at the time) started his day program, he was exactly like Joan said....yelling, refusing to get out of the car, trying to open the door on the highway - wasn't pretty. He sat in a corner and refused to eat or participate for about three weeks. The program wanted him there at least two days a week. They went along with "hiring" him to work there. And the staff are amazing, working to include them and feel good about their accomplishments. They do so many different activities and are monitored by a nurse. Now he thinks he runs the place and the others there are his employees (we owned our own business) and he now goes 4 days a week and I hope to add a fifth soon. If he has a bad morning at home, he will walk into his program and he is all happy - like someone flipping a switch. He still complains about being there and all of the jobs he has to do, but he looks forward to going every day. The doctor said it is easier to get them adjusted "sooner, rather than later". I work full time and knowing he is safe and cared for by wonderful people has been a life line for me.
My husband saw his neurologist on Wednesday and he asked me if I had thought about a day program. He also told me "sooner, rather than later". He said from experience with his patients' caregivers that adult day care should be started while the person with dementia is still a bit social and not overly agitated by others. So, I thought it was too early to even be thinking about it, but he suggested I look into the VA day program they have at the VA hospital about 20 minutes from our home.
Thanks everyone for your responses. My husband was diagnosed almost 5 years ago with EOAD. He has been to neurologists, psychiatrists and now has a geriatrician. He has Alzheimer's meds and takes Celexa for depression. There have been many adjustments along the way and side effects to deal with. He has had some violent episodes and periods of agitation in the past but that all seems to better now, controlled by meds or deterioration. He won't go to the day program or have an in-home aide because of toileting issues. He thinks "volunteering" at the program would be fine if he didn't have bathroom issues. He knows he can't get paid employment because of his disability status. Clothing issues were worked out a long time ago---no buttons, snaps, zippers or belts--just elastic waists or hidden expansion waists. He sits to urinate and has been doing so for years, yet still he has accidents, misdirection, forgetting and other problems while in the bathroom 1-2 times a month. He is experiencing left hand and arm weakness, and visual/spatial problems and can't clean up after himself or redress, but he still tries and seeks my help when frustrated. He believes having helpers with toileting "is different for a man." Tough love, ignoring protests have been tried and the anger backlash has been endured, but I may try again, when my resolve returns. People tell me they admire my strength and my patience---all the while I'm screaming inside, well, you know, you all KNOW and I'm glad to have this forum and new friends. Thank you.
I have been visiting this website as well as others for years now. I have learned some tips and much about the dementia experience. Read the books and journal articles, watched the TV specials and have been further educated by the "practical experience." Reading the message boards has shown me how caring, encouraging and uplifting total strangers can be in sharing our journeys, our hopes, our despair and even humor. There have been some hilarious reports on here, but sometimes I'm crying through my laughter.
Welcome jerseymama. If you've been visiting here you already know you have come to the right place. We are happy to have you and look forward to holding hands as we all make the awful journey that is AD. Hugs to you.
We have been doing the 4 hour once a week daycare..really just a volunteer group. This week G said he is doing it just to get out of my hair (which is true) and feels he should be doing the helping volunteer work rather than being the recipient. Everyone in this group is far more advanced than he is, and I totaly understand his problem with it....that said...he is willing to go back, at least for a while. Day by day.
I think the sooner rather than later stance is a good one. My problem was that the only place I found that I could get to in the Winter could not keep him inside. At that point he was doing daily 2 hour walks and they had "lost" a dementia patient a few weeks earlier.
The place I found recently is experienced with dementia patients, and they are capable of handling a late stage patient who paces the entire time he is there, and they aren't going to lose him. But my husband would not go there willingly, and I'm not willing to deal with aggression hell.
This is one of those do what I say and not what I did things. Try to find a day care situation EARLY, way earlier than you think is appropriate. But also be open to more than one kind of help. Frankly they keep suggesting day care for two reasons. It is good for the caregiver to have time off, away from caregiving. It is also very good for the patient to have socialization. If you can do this, it is almost certainly worth doing. But when they say do it early, they are right.
My husband has been going to Daycare for a month now, he goes twice a week. Some days when I pull up to the building he says "Oh S*#*%" or "Oh No" I usually tell him, they need him to help with opening doors or making them laugh. Having FTD he acts silly most of the time. Once he is in the building he is fine....so far. He is always glad to see me at the end of the day though.
jerseymama--my husband also was dx with EOAD about 5 years ago. I cannot imagine how you have survived without daycare or in-home help for that long. I put my husband in daycare about 3 years ago, now combine it with an aide in our home. Could you bring an aide in and say it's a cleaning person to help you? Perhaps after he gets to know the person (especially if it was a male aide), he would let them help with toileting? I understand his reluctance in having strangers help him--my husband is the same at this point--but if we had a male aide, I think I could swing it to get the aide involved with the ADL's--would remove the modesty issue.
Sooner rather than later is good advice I think. Especially after this weeks failed 'trial run' at having DH visit a friend for lunch at the Alz facility.. (suggested by the Adm.) while I picked up some groceries.
It helps to see that others have had better outcomes. I've been mulling over what I should have done or could have done to make things work better. I guess I should have NOT gone to get groceries and stayed onsite so that when he got antsy and ready to leave, that could have happened. As it turned out.. after lunch, the residents including his friend, take a NAP.. there was nothing for DH to DO..and he ended up visiting in the office with staff members and was totally frustrated and mad at me for DUMPING him there when I went to pick him up.. The admn. said.."this is not unusual". I'm sure its not unusual for those who are enrolled.. (I was a Kindergarten teacher and KNOW its not unusual). BUT the administrator KNEW he was coming specifically for a good pre-enrollment experience..and I don't know if he will EVER agree to go back to visit a friend or for any other reason. I had talked with members of the staff (other than administrator) on several occasions. There were various ideas about how to involve him and have him meet some of the other male residents who were as social as he. All of this evaporated in one brief hour and a half even though I called ahead before we came.
I suspected a disconnect in communication immediately when we walked into the place.. We were on our own. Had to find DH's friend by asking various ones where he could be found. They sat at a dining table with no interaction from staff and before I left, I spoke to a staff member to let them know DH was there not only to visit his friend but I was hoping he would be joining their day program.. .. Anyway ..Nuff said about that. The only clincher for me was that he was sitting by himself holding a BROCHURE for the facility. some kind soul had given him something to READ.. and he CAN read and was mad as a hornet. Not sure we'll be able to inspire him to 'volunteer'.. I don't know what we'll do next. This is the only Alz.facility that is convenient and supposedly good and the only day program available. After that kind of experience it will be a long time before we could try it again.. I really messed up.
Judy it was not you who messed up-it was the facility. We all carry enough guilt without tacking more that is not of our doing. The social worker and I also could not convince my husband to "Volunteer" at a day care.
Judy--sorry the daycare experience wasn't better. We are now on our third daycare facility, and three's a charm in this case. You may want to search for my old posts on this issue. My husband attended two other centers, one of which he was kicked out of! The current center is not as convenient, I have to provide transportation, but it is worth it. I cut him back from 5 days a week to only 2 because of the distance. I believe that finding the right "fit" is critical. Programs vary quite a bit, they are not closely regulated enough in my opinion, and it is worth the effort to travel farther if it means that things will run smoothly.
marilyninMD---thanks for your kind words. We have had 3 male caregivers. First one was a no show! Second one quit after 2 visits to take a full time job and the third one was "fired" by my husband. The agency screens and qualifies applicants and has worked very hard on our case, but it is very difficult to find male caregivers for full-time and especially part-time it's almost impossible. I've tried to enroll my husband in a day center 2 years ago, but he would have none of it---all women and 10-20 years older than him. They tried the volunteer angle. No luck. The current place we tried last spring and again this winter. Husband is still reeling from my attempt to "get rid of him." When he is calmer and with support of his family, we will go again. We have checked out a few programs and I think this program is the right fit if we can just get him out the door and drive over there. I'm glad to hear that your third attempt was successful. Maybe it will be for us too.
I am persevering with day care (two full days a week) even though dh protests every morning -- but not vehemently. When he gets home I've given up asking about what he's done (he always says "nothing" which I know is not true), what he had to eat (He always says the food was no good) and I have NEVER asked him whether he liked it and wanted to go back. I'm sure he would say no and I won't give him the chance. I just welcome him in (he is always full of smiles) and make popcorn or something else that he likes and it is a good time together.
Manwhile the staff says that he participates well, is cooperative and seems to be settling in (it has been six weeks now; they say it can take that long). He did wander away once; they found him somewhere else in the building, eating an apple, but went back with them willingly. I will not give up on this unless I hear from the staff that it is not working out (or he absolutely refuses to get in the van, which has not happened.)
They do have a quiet time after lunch when a lot of them doze off. DH does not sleep in the daytime and I think he is bored during this time, but he would be bored at home too. After that, they play some active games which he likes (but can never tell me about).
As usual, I enjoy the comments that you have made on this subject. Since, I posted above, some new wrinkles have occured (aren't they inevitable?). I have also been getting advice from JeanetteB on this subject, but, that still doesn't make me an expert. My DW is also going two days per week and it is a lifesaver. Not hard to get her there anymore. She always thinks we are going to Church, and that is Ok so I don't tell her different. The other day, when we drove into the day care facility, she asked me if we had been there before and went right in. Thats good.
This morning, however, she would have gone to a NH is one had been available. She tried to put my lower dentures in her mouth and when they wouldn't fit, she put them 'someplace'. Barely remembered even trying to use them and no hope of knowing what she did with them. Two frustrating hours later, I found them in her panty drawer. Wouldn't have thought to look there if she didn't put everything from wash rags to toothpaste and other things in there regularly.
Dean, I hope your dentures had fun in her panty drawer! So glad you found them. I'm losing things all the time and don't even always need dh to help me do it.
I feel better about trying again. It helps to hear that we just need to find the right fit or maybe I need to talk to someone else at this particular place rather than the administrator. I wonder if I talked to DH and explained to him that I needed him to be able to WAIT for me at this place..while I went to my own dr. apts. etc. and while he was there, he could sit with his wordfind or watch TV or do the activities of that day. Have any of you been that straightforward?
Dean..what can I say.. Have to laugh.. Phranque..where are you now?? hee hee
Slometimes I just want to say that you all don't know how frustrated I get and what I put up with. But, on second thought, I know that you do and that this is the only place in the world where people understand. I think (not quite sure yet) that you are helping me get more patience. Some days, I sure could use them.
How do all of you get your LO out of the house, dressed and ready to go to day care, or anywhere else? I could never get mine to go anywhere he doesn't want to go. This was a very, very social man who now is content to stay home every day and never leave the house! If he says no, that's it. There isn't anything I can do to change his mind.
Bev, that does sound tough. I've often felt so sorry for myself because dh is up early and raring to do -- and NEEDING to go -- someplace all the time. But he is quieter nowadays, especially in the mornings. Maybe the effect of Risperidone. But it still is not easy to get him to go to daycare, although I hear he does OK once he gets there, and has been having animated conversations with the other men in the group. This morning after I climbed back out of the van after getting him settled, he was so mad at the driver that he threw a notebook at him. Scary. He got there, though. I wish they would always send the Thursday driver, that works much better. I have just got an email address from one of the caregivers so I will be able to have more contact. I was reluctant to call them since I know they're busy. With the email they can answer when they have time.
Also, as of today, I have a case manager who was here this afternoon to talk about any problems there might be and may be able to arrange more help, such as a third day at day care (not ready for that just yet), a volunteer to come to the house to provide activity and allow me to get out, and will help me arrange things like emergency/temporary care and if necessary a live-in facility for later. She was in contact with the day care staff before she came here and they told her dh was such a friendly guy. Wow, that was a surprise. She also arranged the email address for me.
Wow, Jeanette, that sounds wonderful. We certainly don't have anything like that here in the States. I hope you are able to take advantage of any and all help that they offer.
I think she would be called a social worker in the States. She was assigned to me because dh is now "in the system", being at day care two days a week. I will probably have to pay some 'individual contribution" for her work on my behalf but it probably won't be too much and it really feels good to have an advocate out there. She will be attending the periodic consultations that the day care staff have about their clients so I will be getting feedback on that. (I can attend the meetings if I want but for now I think it will be fine just to have her do it for me.)
Judy--to answer your question--I have never been that straightforward, myself. However, I actually read what you described in some of the AD books--to tell them that you have to get some things done and you'll be back. You could probably say that over and over, and hopefully, he won't remember.
Bev: I had a terrible time and it almost came to blows (not really, I tend to exagerate) but, it did get ugly. That is, I hollered at her and demanded that she go. It worked, but, if it hadn't, I didn't have a back up plan. Now, she always thinks that we are going to Church and that, she is willing to do. So, I just let her think it til we get to where we are going. (Shame on me.)
Dean, that is the strategy that often works for me. You do what has to be done, the fibs are to keep our LO's feeling peaceful and secure, while we go ahead and get things done. It's the way it has to be (for me at least.) The other morning I arranged with freinds to meet them at a movie theater at 4 pm. DH was sitting beside me when I got the phone call so he knew about it and started wanting to leave right then. After explaining (silly me) at least three times that it would be many hours before it was time to go, I finally told him that our friends had called back saying they couldn't make it after all. In spite of the fact that the phone had not rung, that was all that it took to calm him down and allow us to do other things. When it was time to go to the movie I said they had called to say they could make it after all and he was delighted.
Thanks MarilyninMD, I've never been able to be straighforward at all because DH has never acknowledged there is a problem. Its OUR problem and he's 'fine'. But unless he FORGETS the visit last week and how agitated he was. I don't think I can 'con' him into going back for any other reason. I could never get him to agree to 'volunteer' at our local nursing home when he was fully capable of doing that a year or so ago. He even went there several times a week anyway to visit a favorite teacher but didn't want to stay longer than that visit. If there are better ideas out there, I'm eager to hear em. Thanks so much.
Actually Sandi* we do have that system in the US. The local Area Agency on Aging (one in every county in the US) sent out both a caseworker and a care manager. I could not get my husband into the system, but they will come out to see me any time I call them, and they have provided a great deal of information about a lot of stuff. And once you are in the system, they automatically come out at least once every 6 months.