I have been unavoidably out of touch for a while. It is a long story, but, I am just enjoying reading your experiences inre daycare and in home help. My DW cannot stay alone anymore (Dr's orders, etc.) so I take her to a church daycare on Tuesday. It cost $15.00 and is from 9:30 to 2:00 with lunch. It is wonderful. Just wish they had it more days per week. However, it is a struggle every week to get her to go there. However, when I pick her up, she always says she had a good time and promises them that she will see them next week.
Now, I am bringing a lady into our home on Wed, Thurs, and Sat under the pretense to DW that she is a cleaning lady. Which she is in her spare time. I had to stay here with both of them for a while so DW could make a transition. Deceitful, but, it worked. Cost is $10.00 per hour which is a lot, but, it just has to be.
Inre support groups - I have been intending to comment on ours. We meet twice per month with the patients in one area and the caregivers in another, but, I don't care that much for it and I don't get much out of it. Much prefer this website.
Jeannette--That is a long day for your husband! I'm not surprised he was really tired. If it is a problem, perhaps they can rearrange the transportation schedule and do a later pickup or earlier dropoff? At least until he gets used to going?
I finally got hold of the day care center this afternoon. The person I talked to had not been there yesterday but she read me some stuff from the log so I can better understand how the day went. It was amazing how much there was in the log that he had not been able to tell me (you were right, Marilyn). They did all kinds of things. Not surprisingly, Siem had said he wanted to go home after lunch, but it was explained to him that he would go home at 4. At the end of the day they played a game with a big ball (which he usually likes a lot). I asked the lady I talked to for advice about getting him to go on Thursday and her advice was pretty much in line with my instinct: Don't talk to him about it ahead of time. Just be ready when the bus comes on Thursday morning and usually they will get in without any problem. The only thing I have been saying to him is that I am planning to do a lot of Christmas shopping on Thursday. He hates shopping, so I'm hoping that any alternative will be preferable.
That's funny, Jeanette--whenever I leave my husband at home with the aide, I tell him I'm going to work out. Sometimes it's true, but other times I say it because I know it's the one place he doesn't want to go.
JeanetteB: I found it interesting that you were able to work a way to get your husband to go to the day care. I mentioned above that it is a 'struggle' to get my wife to go. That was just a nice way to describe it. What really happens is not pretty and often not pleasant. At first, she cries that she doesn't feel good and then she just cries and screams that she is not going. I have finally had to just almost scream at her and tell her in no uncertain terms that she is going. Sort of demanding. Much like we used to order our children to go to church or do something that they didn't want to do. I try to be nice, but, I have to admit that I often fail. However, she does go and doesn't hold the episode (screaming fight) against me. I think she forgets about it and that's good.
Dean--Where does she LIKE to go? Shopping, out for a meal? You need to tell her that's where you're going, but take her to the daycare. By the time you get there, with all the distractions, she may forget what you said.
I've been intensely reading here because I think we are very close..probably past that point..where the day care opportunity might be an answer here as well. Thank you all for such good helpful information. There is a day care component at the Alzheimer facility that is 40 miles away.. no other day care programs exist in our area. The Home Instead care person does a good job here but unfortunately, has so many personal issues that every day that she is due to come...there seems to be some problem that causes her to come late or reschedule for another day. DH needs supervision and no active caregiving..he likes her, which is the main thing. But this service is far too expensive to continue if I can't keep appointments or do errands on the days she is 'supposed' to come.
I hate to report her to the agency because when she IS here, she is amazingly efficient. I keep thinking that surely her calamities will end 'soon' and the weekly arrangement will actually WORK.
Anyway, seems that the answer might be daycare on those two days a week..or even one day..that would allow me to grocery shop and do whatever was needed.
Well tomorrow is day care day again and I am all tense with wondering how it will go. Thursday he absolutely refused to get in the van with the driver. The driver was a shy young fellow who didn't say anything and that didn't help. Siem was headed back towards the house. I thought if I let him go back in the house today that's going to be the end of day care, so I did the only thing possible and got in the van with him. I didn't realize until we were underway that I had come out of the house with only my keys in my hand and had no money or transport card with me, so no way to get home. (I ended up borrowing money from the driver till the end of the day when he brought Siem home.) When we got there he kept protesting but when we reached the day care area he said, Oh, I've been here before, and when the carer came and escorted him into the sitting room where the others were, he went along with her. I didn't go in, but took the opportunity to talk to couple of the other carers about the previous time he had been there. Later while I was running around (doing some Christmas shopping) they called me to say that he had been missing, but had been found in a different sitting room, calmly eating a tangerine. He had left looking for his jacket, which he said he needed because he wanted to go home. He had also initiated a discussion about how he didn't want to be there. For the first time, she sounded less optimistic about whether he would get used to it and enjoy the day care eventually. When he got home, he was not angry at me at all and did not hold any of this against me. Just like your DW, Dean, very surprising. He just asked me several times what time I had left. My strategy for tomorrow: I'm saying that they have asked him to please bring along some photographs that he has taken. I have compiled a loose leaf binder containing some of his photographs of flowers and trees, grandchildren, Art Nouveau, etc. He was interested in this yesterday and enjoyed looking at the book and identifying the pictures but I haven't dared to be very clear about where he is supposed to take it tomorrow. Once he says "No, I'm not going there" he will dig in and then I'll have a real fight on my hands. This time I'll be better prepared to go along in the van if necessary. I've also asked the driver to take more initiative (but I don't know if he can).
Jeanette, i can almost feel your relief once hes on the van:) how about bringing his favorite food along? and maybe the driver can give it to him as he gets into his seat? i know from your posts he is fascinated by food and loves to eat:) that would be my tactic! use food to coax him in? and once hes on the bus he can have it - you may wind up riding the bus with him for a while til it becomes habit and more familiar to him . good luck we are rooting for you ! divvi
Jeanette, maybe you could drive him to daycare yourself and then you would be free to pick him up whenever you felt like it....he wouldn't have to stay as long. If you could walk him in and deliver him it might make him more comfortable....you could see that he is settled and then leave. At least that is what I used to do with my husband.
Jeantte, I was thinking the same things that Sandi suggested. I've done it both ways, and believe me, the van was nothing but trouble for Steve. It put him in a bad mood from square one, and sometimes the day would go downhill from there. Now I take him in, see that he is greeted and joins the activity before I leave. Much better.
Yes, sandi and Marilyn, I am keeping the option of driving him myself in mind, but I really think in his case it's not the van ride that he dislikes but the whole idea of being there (I may be wrong so I''ll keep on top of it). He started a discussion there about it on Thursday. He told the carers that it might be fine for some people but not for him. If sometime he absolutely refuses to go in the van I will try to drive him, but to tell you the truth driving him somewhere he doesn't want to go is horrible, maybe even dangerous.
Divvi, that's amazing. I had the same idea this morning in bed before I got up. At the van door I handed him half a Snickers bar (which he NEVER gets, being diabetic and I just happened to have tucked away at the bottom of a drawer) and that distracted him. What do they say about great minds? <grin>
Anyway, I've had a good day in spite of the rain, got some Christmas shopping done, went to a meeting for caregivers (for loved ones with all kinds of handicaps and ailments; I was the only AD spouse there) that was very informative on financial matters. Also had a dish of Hagen Daz ice cream downtown, bought myself the book for my next book club meeting (Wolf Hall) and bought myself a bottle of Irish Cream. It was "spoil Jeanette" day and since no one else was doing it . . .
Good for you! we've said it many times that AD loves sweets and its our silent weapon when needed:) distractions work wonders-hope it works again on thurs! try to vary the bribes so he stays interested:) Divvi
Well, I've been following this. Tomorrow we go to day care for intake. It is a different one from last year. I can do half days (one or two a week is OK), or I can do full days. I'm going to try to start with one half day a week if they will let me.
In addition a volunteer group has called me for intake. They will do a bunch of small stuff. When I get the next phone call for an assessment interview, I'm going to add the possibility of small walks for my husband in addition to some light (very light in this case) housekeeping and just visiting. Frankly I'll take what ever I can get from this group because it will be free. And just seeing a new face would be good for both of us.
Whenever I take my husband to the Hospice Hospital for respite, we all get in the car, and I drive two blocks to TCBY and get him a chocolate malt (his favorite treat) and he drinks it all the way there, and it lasts until he's in his chair by his bed in his room. He concentrates on his malt and seems oblivious to what is going on around him!
On the way home, we stop and get him one too....this time he was ignoring me when we picked him up, and I said it was time to go home and held out my hand and he took it and held on tightly. After we were in the car, I told Drew that I bet if I got him a malt on the way home, he'd give me a kiss when we got there....and HE NODDED!!! <grin> I was thrilled that he actually understood what I had said! <grin>
Remember, that they are regressing. They are no longer adults. Look at how they behave and judge their age. My husband is less than 1 and a half now.
As a teenager, he bought chocolate covered doughnuts and hid them! As a ten year old, a few months later, he threw things down when he didn't get his way. (almost broke the remote control!) As a two year old, it has been fun....he loves things he can hold in his hand...like his vibrating toothbrush. (I let him carry it in the car when we're going somewhere, and leave it in the car when we get there.)
You just have to find the right bribe for you for the occasion. <grin>
Try it, you'll like it!!!! Try to have some fun with them and realize that they are doing the best that they can to be what you want them to be.
Enough rambling advice for today! Love to all of you!
Thanks everybody. Starling, I hope your intake goes well for you tomorrow and that you get some respite and companionship out of it. Keep us posted! I was advised by the day care center that one day a week was too infrequent to start with, because it does not allow enough continuity for them to get used to it. (This seemed like genuinely caring advice but of course it's possible that they perhaps just needed more time filled.)
I called the day care at 4:15 when Siem was on his way home, and the news sounded quite encouraging. He cooperated today, participated in the activities, showed his pictures and talked about them (we had gone through the album a couple times at home so he was prepared), ate a good spaghetti lunch (he denied this categorically when he got home; I didn't argue), AND (what I liked best) had an animated conversation this afternoon with one of the other guests. It would be great if he could make a friend there. Again he was not angry at me but just asked (three times) why I hadn't managed to get into the van with him. I told him (three times, very patiently) that I had a meeting at 10 o'clock (which was true). He was in bed by 7:15 tonight. That's good because we have a very early appointment for his diabetes check-up tomorrow morning. Getting him there will be the next challenge. He absolutely refused to go into that same building to get a flu shot a couple weeks ago, but stood outside till I was done.
Jeanette--I've read and been told that you need to establish a rhythm with going to daycare--every other day may be good. Even if you could add a second day, I think it would help get him acclimated. Good news about the cooperation--my husband has made friends at each center he attended. Even with dementia, I guess there is a "chemistry" that attracts people to each other.
Marilyn, my dh goes twice a week, Mondays and Thursdays. My comment about once a week was in response to Starling's mentioning the possiblity of starting with half a day a week.
Thanks for the explanation, Jeanette. I'm a little dopey today--I must have forgotten my allergy pill yesterday and haven't really woken up yet (and it's 5 p.m. here)!
My DH goes three times a week. He loves to dance and they have someone there playing music once or twice a week. I don't bother asking him what they do anymore as he never remembers. He doesn't remember eating either. We get a calendar every month, well, two calendars actually. One tells what the meals are each day and the other tells the daily activities. Sometimes when I drop him off, he'll say that he'd rather spend the day with me but he'll still go inside.
Good news at the doctor's office this morning. Dh's blood sugar and blood pressure were both OK. DH did not want to go into the building but finally did. Then we still had time to go to IKEA for breakfast but got rained on on the way home. Then we both had an appointment at the hairdresser's. For the first time he wouldn't go home after he was done but just sat there waiting for me. That was actually good because I'm no longer sure he knows the way home, even here in the village. Then this afternoon downtown to the library and out for a spot of supper. so it was quite a busy day.
Today I brought the completed forms to start my husband in Daycare on Tuesday's & Fridays starting next week. We visited this place last Wednesday, it is really a nice place...no funny smells, & everyone is so nice. He went into the activity room for a snack while I spoke to the Director. He also went with me today, again went with the activity director with no problem, had a snack, done some exercises, they ask if I had any errands to do, which I did...they insisted I let him have lunch while I ran my errands. I left, feeling like I did the first time I took my boys to Kindergarten & College the first day. He was fine when I returned, watching Lucy with some other residents. He didn't really even react when he saw me. Eases my mind. Hopefully, every day will be like this. The only downside I can see is that at 58 years old he is much younger than any of the other residents.
Kadee, I had the same feeling about sending him off to "school" and the same concern about his being the youngest. But he has not said a word about that fact. For about a year now we have been going to senior meals where we are the youngest people, and Siem seems to have no problem with that either. So perhaps it is not a problem.
Kadee, how wonderful you got the daycare planned!!! it will do him a world of good to have activities and some friendships- i dont think age will factor in much if there is a good activity director they will do things for evryone to participate in. good to hear you will have some free time now. divvi
Kadee, his age may actually play in your favor, as he might come to believe he is helping the oldsters. It sounds like he'll do fine. I'm so glad to know you are going to get some "me" time.
When we're dealing with EOAD or FTD at a "young" age, sadly, we are always the youngest. It used to bother me a lot in the beginning, but I've gotten used to it. I don't think it ever registered with my husband in a negative way, as Folly said, he was in much better physical shape than most and could push wheelchairs, retrieve things for people, and actually perform the duties of a "volunteer". Sometimes the staff had to hold him back, as he wanted to do more than was appropriate.
I went to the day care today for an assessment. I asked my husband if he wanted to go there and he said yes. Who knows if it will be easy or hard to get him there. I've got medical paperwork and a TB test I need to get done before he can actually go.
I was impressed because this place KNOWS dementia. And they can handle late placement to help avoid nursing homes. They do assisted living and nursing homes as well in the building next door to the day care as well.
In April I tried out a different place, and decided it was too soon for him because of his daily 2 hour walks. Those are now over. But I think this place could have handled him back then too.
Dh got into the van to day care this morning with no protest at all. (I think he likes the Monday driver better than the Thursday driver.) But he didn't eat the Snickers I gave him for on the bus until after he came home this afternoon, which kind of defeats the purpose. On the way out to the van I was telling him that I had to go to the dentist (true) and he was confused, thinking that the van was going to take HIM to the dentist. (His appointment is tomorrow.) He took along his notebook. We pasted some photos in it, and have been keeping a diary of things we've done so they have something to talk about. He showed everybody the pictures and the carers wrote in it for the first time. Their account was pretty upbeat, but dh was complaining for a while after he got home, basically that he was bored and just waiting for the time for the van to bring him home. He doesn't like any of the other guests, as far as I can tell, only the carers. I can't judge HOW bored he was, but it would be pretty typical; he's bored wherever he is and is just waiting for time to go away, or when we get wherever we're going, for time to come home again. But for the first time, he did describe a game that they played, with numbers on a sheet, and they had to toss a ball onto a given number.
its a good sign hes adjusting little by little with each trip - he may have not eaten the snickers but i guarantee he felt it in his pocket to make sure it was still there and he didnt lose it! hah. happy for you both its working. divvi
Tomorrow is my husband's first full day at Daycare. Hopefully, everything will go well. He has been a pill today....word for the day has been NO! Wish me luck.
Kadee: I will be looking for your report all evening. Tomorrow (12/02) is my wife's first time at day-care. I took her with me when I went for approval and she said OK. No way of knowing if that will still be true tomorrow. She is supposed to be there at 8:30 for breakfast and she doesn't like to get up that early and has a terrible time geting ready to leave the house. She especially has a hard time fixing her hair. Over and over again and then still not happy.
dean, on Tuesday I'm doing exactly what you will do tomorrow. I'll going in to do about 45 minutes worth of paperwork and then I'm leaving him there. We will be avoiding breakfast for the first month, but he will stay for lunch.
Thanks everyone for your good wishes. He is not an early riser, so I brought him at 10:00 & picked him up a 4:00. He was happy & smiling when he saw me. The nurse said, he was no problem...the problem was with me, feeling like I had abandoned him, about the same way I felt when I brought my sons to Kindergarten for the first time. I am sure it will be easier as time goes by. I was able to complete lots of errands. He did fall asleep right after his shower. I think it probably was a long day for him..he normally sleeps about 2-3 hours in the afternoon. Dean, Just remember these people are trained to deal with anything....at least that is what I kept telling myself. Now we will see how Friday goes.
Yippee, Kadee, I'm green with envy and delighted it went well for your DH. Hope Friday goes well also and that you find at least one little thing "fun" to do for you while he's there.
Hope Starling had a good day. I have mixed feelings about tomorrow for me. Some trepidation, but, I'll make it. I have been telling my DW that this is for rehab. Shame on me.
All of you are great and you will never know how much your writing helps the rest of us.