Every once in a while there seems to be a couple days in a row where I am again and again shocked by new signs of decline. Today I was outside and DH called me to the kitchen door saying "Rob" had come to borrow something. Rob is our son in PA. It turned out to be his brother (with an entirely different name). Yesterday he said (making up after a rant) that he would really rather marry me. I just gave him a hug and said Me too.
Scary when this happens after it seems for a while that he's been holding his own.
Yes, sometimes it goes on for a while on an even level, then the bottom seems to move beneath my feet, too. I've noticed that although John is calm now and his nurses call him " a nice guy" to work with, he has become very child-like in his behavior. I don't see him on an everyday basis anymore, though. Wonder if I'd have noticed that if he were able to be home with me.
I just see John as one who definitely needed eight or ten nurses to care for all of his needs. They must be very sweet, and, unlike me and you, are able to detatch from his occasional outbursts. I bet John IS better with that much activity and attention all around him. Don't take that as an indication you were not sufficient...just be happy he is ok now and you can see him whenever you chose. No more rants, no more scary nights. Happy you were able to get out last weekend. Good for you! I'm sure the word will get around that you can come to parties and little gatherings now that you have time. (NancyB)
NancyB...thanks. Yes, I understand how much care John really needed that I am simply not able to provide. It IS a relief of sorts to know he's where there are three shifts to take care of his needs. I'm trying so hard to re-order my life and make friends again, get out around folks again. Become 'healthy' again, myself. I had become quite reclusive. Everyone at the nursing home IS very sweet and caring...he never has to wait and wait like before, in the NH in Florida, for someone to tend to him.
This is scary. I was gone on an errand for a few minutes and when I got home, met DH coming out the front door, ranting and raving. He was on his way to "mail" a whole pile of stuff he had in his hand, including junk mail that had just arrived, but also some documents he had taken out of the glove compartment of his car, including the car registration papers! I was on time to stop him, got him to come back in the house with me, where he continued ranting. But insisted on cycling into the village to "mail" one piece of junk mail that he had opened. ANd insisted that I go with him so I would know how to do it next time. Finally, I did, hoping the ride would calm him down. And it did.
Yes, I hid a lot of stuff this afternoon. Don't want him losing tickets, passports or important papers. I'm going to have to get more organized with keys, too. Make sure I have a spare of all the doors hidden away.
Yes, I'm working on the meds. Neuro did not call me at agreed upon time and now has not returned my calls. I'm giving him one week from today.
Jeanette, there are earlier threads dealing with the mail. Outgoing and incoming. I had to speak to our postperson about not taking mail left in our mailbox. My husband MADE an envelope out of a piece of paper that he had scribbled on, folded it, but not the normal ways we fold things, and put HALF of OUR address on it and put it out to be mailed. Another time, he got an ad out of a magazine and tried to fill it out and put it in the mail box! Another time he wrote a two page letter (maybe five words were actual words) and put it in the mailbox. I had been ready to buy a key lock mailbox when this phase passed! He would also get the mail and sometimes open it, sometimes put it in the trash, etc. - I had to play hide-and-seek daily for about three months before this phase passed. It was one of the more stressful ones for me. I didn't want a bill misplaced!
Then, the wanting to leave the house in bad weather several times convinced me of the keylock deadbolts. Everyone's situation is different and every person with AD has to be handled differently. We all just pass along how we handled it to try to help the next person.
And yes, I have a fireproof lockbox I got at Walmart that has passports, birth certificates, POAs, etc. in it. I took the rest to the bank lock box. We have to protect the papers we will need.
Jeanette, I'm so very sorry this happened! I get all my bills except a couple by e-mail and they are also mailed to me. That way, if DH gets the mail before me and trashes it or hides it - it doesn't matter, I've already gotten it on-line. The ones that I get by mail, I have set up for a date of the month to go on-line to their web-site to look at the bill. So far, this has worked for me. But I don't have the problem of rants, so it's no big deal. I do hope you can get his meds taken care of. Can't believe the doctor hasn't called you!! Good luck.
Things have calmed down a lot with the Risperidone and we've had no more problems with the mail. He is even taking his pills very nicely, no problem at all. Even helped in the yard a little and did his best with visitors. But a very disturbing sign of decline today. Last night his bike had a flat tire when we wanted to go out for supper so we took my car. This morning he wanted to go to IKEA for breakfast and had forgotten that his bike wasn't working. I reminded him that we had to take it to the repair shop first, so we walked over there, turned it in and they gave him a spare bike to ride, so we rode to IKEA. He does not like the spare bike and wants his own bike back, not having the bike is very disturbing to him, but it won't be ready till probably Wednesday. But he went on and on about taking this worthless bike back to the shop. "But your own bike isn't fixed yet, so you won't have anything to ride." No luck getting through to him. Finally he just said he was going and off he went. I thought: let them deal with it at the shop, they know us and maybe they'll get his bike fixed sooner if they see how agitated he is. After a while he was home. He couldn't find the bike shop. He said they must have moved it. Not unusual I know for them not to be able to find someplace, but for him this is a milestone; this is one of the few spots where he could always go on his own, and I cannot imagine how he could not find it. He wanted me to come help look for it but I said we had to go and visit his aunt in the nh, so we did that and had a very nice ride. Tomorrow we have an outing so hopefully he will be diverted all day and not worry about the bike or the mysteriously disappearing shop.
Jeanette, sorry you too are having issues with the dread declining. you have stated on other posts that your DH rides his bike really fast and others cant keep up - i was just thinking of concerns withthis new decline of getting lost if his ability to ride like that at those speeds are cause for concerns now. i dont know if you have autos on the roads where you do ride. divvi
May be time not to let him go off on his own. When my husband was still driving he was lost for 1 1/2 hours 5 miles from our home. He had been to the Golf Course he was a member at, they were having an outing, so he was going to go to another course he had been too many, many times. He even stopped to ask for directions to our town, however, they made no sense. By the grace of God, he saw something that looked familiar, & found his way home. Last time he drove alone.
Divvi and Kadee, thanks for your concern. No, there are not many cars where we usually ride, mostly bike paths and small country roads. Drivers here are very aware of bikes, it's a lot different from riding most places in the States. When he rides ahead (which he does every day) it is a clear sign that he does know the way. If he is in doubt, he slows down or stops and waits for me. Even today, he couldn't find the shop but had no trouble finding the way home again. He hardly goes anywhere on the bike without me, maybe to the corner to mail a letter, or (till now) to the bike shop. I know he could get lost or get hurt. But this is his life right now, it's what he does and what he is. And he grew up on a bike, it was his family's primary means of transport: no car and the street cars cost money.
A week ago my husband was in such pain from his legs that he just would not come downstairs for breakfast - would not walk down the hall to where the stair glide brings him down. I let him eat up in his room, laboriously lugging the tray up, but the 3-4 trips up and down made my leg hurt like mad. I came down and called Visiting Nurses to send someone out to evaluate him as they did a year and a half ago; they're coming Thursday. He later came down and was fine the rest of the day and has been okay all week except this evening when he was in moaning mode again. Meanwhile, I also went to a nursing home and got him on the waiting list. But he's not had a noticeable decline in cognitive powers.
What really has me worried is WHAT DO I DO IF HE CAN"T WALK!! I don't think I can manage him at home, even with daily help (I have Andrew twice weekly at this point).
Is anyone else dealing with their spouse being unable to walk? I know you did, Sandi, for years, but this one isn't in the near-vegetable state yet...
Briegull, I too, am dealing with sudden sharp decline and difficulties walking. Tomorrow I have a Home Med service coming for evaluation and maybe PT along with bathing. This will be a welcome help but I too am wondering how long I can keep him home if he can't walk. I like to never got him to bed last evening but couldn't get him to his feet this morning. Had to call SIL to help get him up and to the bathroom. Settled in his chair and after eating a sausage sandwich, which I fed him, he slept for over 7 hours. When he woke at 4 this evening I was able to manover him with his lift chair and assist him with the walker into the bathroom. But when he can no longer help at all I am going to be up a creek. He seems to do better once he has been up in the mornings.
My DH also has a very slow gait and I wonder how long it will be before he loses use of his legs. We went to a different than usual grocery store today and when he couldn't keep up with me he felt lost and started to cry. He asked me to marry him so he would not lose me again. (Our 48th anniversary is coming on 9/30.) If he loses mobility it will be ever so difficult to take him with me everywhere I go as I have been doing, but how can I accept home care when he is still cognizant a lot of the time and would never accept someone coming into the home to stay while I go out to shop or a dr. appt. or whatever because he is so in denial that there is anything wrong with him. Anything that goes wrong is my fault according to him. He was diagnosed in Jan. 2009 and the decline since then has been steep. Seroquel has been quite helpful since he has been on it since August 25, '09. At least he goes to sleep early and has been somewhat less anxious during the day.
Weejun, yes I can and do go up and down with the tray, but there's always something missing or needed and I end up coming back down and going back up.. and the stair glide is terribly slow.
Bookworm, do what we've all done, get home care by saying you need the help for YOU. You'd be amazed how many people say that their spouses "would never accept xxx" and then they turn out to do so. I've also, back when mine was not aware of his problems, let him get into (mild) trouble doing something - like getting lost in the store - and immediately saying look, you know, there's SOMEthing wrong or this wouldn't have happened. My husband says he has holes in his head.
Yes, re the gait belt, Charlotte, it helps. It won't help if their legs are jelly, though. We do have him in a hospital bed, but I hate to see him become completely bedridden.
Bookworm, I agree absolutely with briegull. It's definitely worth trying to bring some help into the house. If you can get someone that will do light housework as well as watch your DH, you can start out by staying home while the helper is there and just showing him/her what you want done. Next visit, get him/her started, then tell your DH you've got a quick errand to run and GO! If he is readily accepting you should be able to quickly increase your away time. If he's not, you'll have to proceed more slowly. Good luck.
i agree with briegull and folly too. getting inhome help can be met with resistence at first but its just like the getting them into depends as well. they NEVER want either but both are necessary:) divvi
Being wheelchair bound was one of the reasons Jim qualified for the nursing home. He has what "They" are now calling the Motor Neuron Version of FTD. With that comes muscle atrophy. He is 6'4' and 300lbs. There was no way that I could help him transfer all day.
A very good discussion, as usual: My situation is a little bit different in that the decline is definitely there, but, some days are better than others. The difficult days are becoming more numerous and the good ones don't last as long. However, the new problem is that the worse my DW gets, the more she is proclaiming that she is getting 'better'. I don't tell her that she isn't because I think it would hurt her and she is entitled to some self worth and dignity.
Since we came back from visiting my mother two weeks ago, Dh will say once every few days "Where's your mother now?" and I explain again that she's at her home in Ohio. This usually signals a time of increased confusion, it's new and very disturbing, especially the first couple times it happened. It's not so much a delusion as a sign of being lost in the world, not being able to make sense of place and time.
Jeanette, your last sentence describes AD so well. They really are lost in the world, not being able to make sense of place and time. One of DH's first symptoms was losing the ability to keep up with the day of the week. Now, he has to be reminded what month and season it is.
This morning we took a lovely bike ride to a favorite riverside restaurant where we had apple cake & coffee and watched the boats for a while before cycling home. It was misty when we set out, especially over the water, but the sun came out on the way home. Lovely, with the fall colors.
We had been home about an hour, when DH remarked "It sure is too bad we couldn't go to the pancake restaurant this morning." I reminded him that we had been there. He remembered perfectly, I think, but said "Well, that wasn't really the pancake restaurant. " I don't know what he means by this. Of some people who came to visit us recently he said those were not the real ___ and ____. As if they were imposters or something. No, he no longer knows the month or the season or the day of the week.
Jeannette, my DH is still in early stage but has this same kind of confusion. Upon waking from a nap he will ask where everyone went. There's just the two of us all the time. Lost in the world is an apt description.
Siem's brother just called to say that he and his wife are at their son's house -- just a mile down the dike from us -- and are walking over to see us. I explained it to Siem and he is amazed, because he thinks they are walking from their house, about 10 miles away. He refuses to believe that our nephew lives close by enough to walk. He is convinced that they won't arrive till after dark.
(We cycle past our nephew's house about every other day and DH always looks down to see how many cars are standing in front of the house, and reports to me in great detail, often tells other people about it. He has often explained to people where this nephew lives and how he came to buy the house so near us, etc.)
I've given up trying to explain. He'll see them coming any minute and then hopefully the confusion will all be forgotten.
Joan1012, my DH is always thinking there are other people here also. That's what i love about this board. Anytime they do something unusual, we can always find someone else that's had the same thing happen. I have learned more here than I could ever find in a book. We can never thank Joang enough for starting this.
Oh, how I wish "the people" here were friendly and not a danger to me. He really hates those men in the mirrors and there are too many in the house to cover up. Some nights he walks through every room looking for them.
Noahcam, I am noticing the same thing as to morning, afternoon or night, and confusion about meals. This is unsettling and seems to have come on so fast. He wanted to go to bed around 4 pm, I think he was bored and because it was a dark afternoon it seemed to him that it was evening. I told him we still had to have supper and he was delighted-- he loves to eat. He finally went to bed around 7:30 so I sure hope he sleeps through the night.
Ladies: I am just catching up on this thought and, as usual, it is happening to me also. However, it just started about a week ago. Rather suddenly, but, it has gotten worse every day. Will it go away for a while and then come back again, or is this, like so many other things, permanent?
DW also asked me this afternoon if I should call my Dad. Thats a first also since he past away over 20 yrs ago.
If I keep reading this, I can almost find out whats next.
Put the 2 together and 'ain't we got fun???' DH insisted I change the clocks this afternoon, so I finally did most of them. Ever since he's been confused on "What time is it?" Trying to go to bed to go to sleep and up every few miutes like a yo-yo. Irritated with the dog for staring at him and wanting to go out every few minutes, and "I always have to do it (put him out/bring him in)." On top of that, after the tizzy he was in last weekend over getting his air compressor, I forgot to check the timing to start his extra meds to deal with the Full Moon effect. Got them boosted starting Thursday night instead of last Tuesday morning. Antsy, confusion, do-it-right-now, everything is magnified.
Carol, bring on the Ativan. or increase it. I got a lecture today on the difference effects of the different drugs. Anxiety/Ativan. Meanness/Rage - Seroquel No sleep - Tamazapam,
If all else fails, go into the bathroom and lock the door.
I finally have the clocks changed. Now he keeps asking if it's the real time or what. How do you respond to that? I just tell him that's what time it is.
Yesterday I was vacumming the carpet and got very tired. So, I asked him if he would finish it. He got right up, approached the cleaner and said "What do I do with it?"
He's declining pretty fast now. But, he looks so good and no one else can see it. I'm making an appointment with the neurologist for next week to see if there is anything else that can be done. I know there isn't, but still, I will feel better if I ask.
This disease is just awful. Taking my bright, energetic, funny DH and turning him into a 5 year old. That calls me "Mommy" about half the time. I asked him if he knew my name and of course, he did. So, I asked him why he calls me "Mommy." He said because he needs his mommy. My hearta is just breaking!
But, I'm certainly not the only one and I'm so glad you are all here to keep me boosted up.
Oh, Mawzy, I am so sorry and my heart is breaking for you too. You are so right, this disease is just plain awful. All we can do is put one foot in front of the other and keep going. I do hope the rest of the day will be better for you. HUGS....
Mawzy, last night my DH had to go to the bathroom. He just stood at the door. I asked what he needed, and he said, "I'm not sure what I'm supposed to do now. I reminded him to pull down his PJ Pants and pee into the toilet. He pulled down his pants and asked, "Now, what am I supposed to do?"...... He doesn't cry..he seems to have no emotion whatsoever. (other than anger when I try to help him.)
My DH will tell me he doesn't want to be this way and that he appreciates my being patient with him. He looks so pitiful and sometimes, like Bluedaze's DH, he will start to cry. This just breaks my heart.
Today is the day that I really see a decline in my dh. He woke up with confusion, being lost in everyroom and very antsie,,, if that is such a word.... He could not keep still all day. He is more lost than found, and very angry if I try to help. He wants to figure things out by himself... This has been a very long day to say the least. Nancy, as far as not knowing what to do at what room, that is a daily thing here. My dh has to be having an extremely great day for him to know what room is for what and where they are. We have had about 3 good days but today even tho it is All Saints Day, the devil has reared his ugly head and Uncle Al appeared here working overtime. I am so hopeful that tomorrow is a better day. Suppose to go pick up one year old granddaughter to keep for a week..... hope all have a great week.
Mammie...this is a day for Ativan. The lesson I received yesterday said that Ativan was for anxiety..and if my DH is wandering around - buzzing - opening and closing doors, it is a sign that the wheels in his head are spinning. This is not a Seroquel moment, although it could be helped with Seroquel. Did the box arrive?
One of the things I found that helped my husband when he was doing the wandering around inside and unable to settle was to dance a waltz with him around the house. After that he would usually settle. My uneducated guess on why this worked was it was a distraction, he got a bit of attention from me and he was now moving with purpose. Whatever, this often worked and I used it on him until he could no longer walk. Now, I do the footwork and move his hands and he still enjoys the movement.
Another decline for my husband. Last week he had a high temperature for 3 days, would not eat or drink. After a round of antibiotics he was better on Sunday & Monday, back to eating & drinking. However, he has not ate or drank other than slips since. When he is awake, his eyes really don't focus...just stares. He lost another 5 pounds. Just wishing him peace.