Things here are progressing down hill. I finally got Jim into the shower for the first time since Thursday. He asked why and I told him "cause you stink, lol" He took one, without an argument, probably because we both have therapy appts today. He refused to shovel the driveway. He says our snow blower is not working, but I think he may have forgotten how to use it, as he has with the dishwasher and coffee maker. I have someone coming to look at it. I explained the situation to the guy (a little small engine repair guy in our village) who sold it to us. He said he'd be over and take a look. Meanwhile, although really angry, Jim went out to "shovel", did a lousy job, Mom's visiting nurse couldn't even pull in. He is totally p.o'd at me and MY Attitued!!!! I went out to clean off the car, and "cool off" and my neighbor asked what was going on, I explained and he is snow blowing our driveway as I write this. Oh this is getting tougher by the day and I know this is nothing compared to what you all have been though, but wow, I'm so sad. I feel so drained.
I understand them not wanting to do things they used to do. My husband has FTD also and the other day we had a few inches of snow. He snowblowed the driveway but not the end of the drive. There he left about a foot of snow that he had blown there. I asked him to get rid of that snow too and he said "no, it looks fine". When I told him I would do it then he got a little angry, but I told him if you won't I have to--he went in the house and I finished it. Before this FTD, he was very particular about how the snow was cleared, now does the minimum and says it looks good to him. I know it's all part of the disease -their judgement is just not there-but it is quite draining on us too.
I have never SEEN a snowblower, much less used one, what a hassle that must be. Of course, we had our Hurricane IKE and lived without electrical power for 18 days, no phone service of any kind, (cell or home) for over a week. Don't know which would be worse. DH flipped light switches day in and day out, and insisted I change the bulbs. Several other home based dementia patients went off the deep end during this time and had to be moved into MCF's. Talk about disorientation and confusion!! It was un-freakin'-imaginable. I remember the last time he got out of the passenger side to put gas in the car. He said the pump was broken, (it asked for his zip code!) and went in and gave the Indian gentleman a $100.00 bill to let him put gas in the car. I learned about this after we left the station!....Drove right back and got the "change' due us. Now, I pump all the gasoline that goes into my car.
Jim's wife, As things progress you will find the need to either take over the chore or hire it done. I agree that he has probably forgot how to use the blower or he may have messed with it so much he broke it. I have found that a lot with my Dh. He thinks he knows what he's doing only to put back together wrong or totally missing a part etc. Our old neighbors were awesome, Dh and I still snow shoveled and had no problem shoveling their walks but when big storms came they would use the power stuff.
NancyB, awwwww snow blowers mean we had some beautiful white stuff fall. Love it to snow. Bring it on!
I LOVE snow....like a little child when we have a few flakes falling. Can't stay away from the windows. I love the hushed quiet after a fresh snowfall, early in the mornings. (Only seen during vacations to Colorado!) I envy you... It's absolutely beatiful!
There wasn't anything my DH couldn't fix. Now he can't do anything and I really hate it. This week I have a man coming to put a new faucet in the bathroom and another one to replace the fluerescent light in the kitchen.
Mawzy makes a list of what needs fixing and has a person to call and they come and make her repairs for her. She is more organized at that than I am.
I don't WANT my husband to try to fix anything any more because something else might get damaged while he is repairing what ever it was HE thinks is broken! Like when he was putting a screwdriver in a ceiling fan light fixture with the power and fan and lights ON!!! I nearly had heart failure until I took the screwdriver away from him!
It's hard, not being able to count on them for things any more. Very hard.
I know what you mean. . Recently, I saw grass clippings on the shoulder of his sweater and asked him if he fell. No, he replied, I was taking the trash out and the garage door was barely opened, so I had to crawl under it. I suggested that maybe he shouldn't take the trash out again unless we do it together. I cannot imagine how he crawled beneath the door that was less than 3 feet off the ground is beyond me. I need eyes everywhere!!
Have any of you noticed that new symptoms seem to show up in groups? Or is this a "normal" progression? Today he also had trouble handling me needing to work out an insurance mix up at the pharmacy, and before that he was talking to the owner of our favorite little cafe and had her in tears telling her about his FTD, when he was done, I tried to change the subject and get him to leave with me, it took quite a bit of effort, but then I suggested that we come back again next week and he left happilly. Dear God I got my first taste of what I am looking to in the future. This happenning so very fast. The good news is that I heard from several sources today that the Veterans Home about 30 minutes from us is WONDERFUL!!! I have an outreach worker from the VA coming out next week to help us. I'm sure there is a waiting list.
Hint - if there is a long waiting list and he becomes danger to himself, try going in the backdoor via the psych ward. Since there was no one to care for my FIL, that is how we got him in. Course, since he was a runner and could be 2 miles away before you noticed and escape from anything you could put on your doors, he was a danger to himself.
Well the Poop hit the fan today! DH was turned down for Medicaid and Medicaid Disability! We are over income, you have to make under 1200 a month to qualify!!! So as of now he has NO INSURANCE! I made aait paniced call to the Veteran's outreach worker and he is cancelling apts for Friday am and will be here at 8am. That's the good news. The bad news is that Jim does not take ANY change well. (understatement) Moving over to the Veteran's system means ALL NEW DOCTORS, visting nurses,etc, including our much loved neurologist! Talk about change! He may be able to keep his therapist because being a county facility they may take VA insurance. There is a wonderful Veteran's Home not far from us and there is a waiting list, so Monday we will go over and get on the lost, plus Jim wants to see it and our daughter, (his stepdaughter, though, you'd never know it :o) wants to do an inspection! He quietly said to her Sunday, "When I end up in one of those places, will you get a job there and take care of me?" (She is a Medical Assistant). She said, "Papa, it doesn't matter if I work there or not, I will always be there to take care of you". OK, I'm crying. Good nite.
Wow, this stuff sounds familiar - asking them to do a chore and they do it partially, but don't finish it and think it is "fine." I get accused of just wanting everything "white gloved". My DH has problems pumping gas too... Having to enter the zip, put in the credit card, etc. sometimes is too much for him. Sigh. So sad not to be able to count on someone to help with the most basic of tasks anymore...
Oh Shannon, I so understand. He cannot do anything I need in the way of help. He cannot even put ice into glasses from the ice dispenser on the refrigerator door. No matter what I ask him to get, ...he'll get something entirely different. The last time he tried to put gas in the car...he had a problem. I didn't realize that when he went inside to the cashier, he gave him a $100.00 bill and said to open the pump. We put in about $30. worth of gas and I didn't hear the $100. bill story until we left. Then I quickly turned around and went back to the station. The cashier was holding his change. DH has no concept of money value, so now we have only$1.00 and $5.00 bills in his wallet... which he never uses, but still knows he has money. I truly do feel like "A Curious Kind of Widow"...a great book written by Ann Davidson. (Barnes & Noble has it.)
My husband, who cannot subtract 7 from 12 (how long is it till midnite?), dress himself, wipe himself, medicate himself, or walk without a walker, today wielded a large knife and carefully cut a cabbage into shreds. And was very proud of himself!! Just you wait, guys! (he's not aggressive, and is fine with a knife.)
uh, Briegull, darlin', ... what are we waiting for?.... A cabbage chopping episode. That's scary.
I wrote a personal note to Joan, asking her about the differences in her husband's demeanor and my husband's. Is the outbursts, temperment, meanness something that we all look to, or is there a chance that my husband, who sits quietly all day, can barely talk, ... will skip that phase. F. has Alzheimers and dementia from prior strokes... and later suffered a broken hip..so he can't get around very well. He does get mad and shout out a few loud sentences, but apparently nothing at all like Joan's husband.
Or: could be, that my husband has always had a temper - all of his life - and always was a little cruel and demeaning, most of his life...and he went through this phase and I thought it was just the OLD him. who knows.
I look back at the verbal abuse he has directed to his children and to me...for a lifetime....and now I am saying...oh, he doesn't mean it...it's the disease talking. I'm so tired of hearing that and saying that! He can remember how to be nice to strangers, with his southern charm and his pleasant "How do you do's" to the plumber and mail man....but when they leave, he's his same old stoic self.
Oh, he was SUPPOSED to be chopping the cabbage. He was in a good mood. I just needed the cabbage chopped and often he's not able to do anything in the line of sous-chef, which used to be the way he helped me at dinnertime.. Usually if I set him to do something he'll start it and then stop in the middle. But he's in a pretty good spell right now and doing things I didn't think he could DO anymore.
He was never mean or cruel, ever, just cold and withdrawn when mad. Now he'll grumble a bit more vocally if he doesn't like something (usually on the TV) but he's only had a few episodes of real anger, and only one or two have been directed at me; mostly it's at his body not doing what he needs it to do. I'm lucky.
My husband also needs help with pumping gas. He doesn't put on glasses so he can read the screen and, although we have been living here almost 4 years, never did learn the zip code. Last time I asked him to water the flowers in the yard, a job he used to love doing, he told me that he is not the handyman! We never know what's next.
I've been out here on the west coast in Never-Never Land for some time now. I've been reading these posts and thinking I didn't have it so bad. Well, I'm really beginning to think I do have it bad--not like the rest of you folks--but it's geting there.
I told you how in November 2006 we were scheduled for a group tour to Rome, Venice, etc. ALL arrangements were made, tickets paid for, reservations, etc. I bought some new things for us to wear. Two weeks before the trip he announced he wasn't going anywhere--flat out refused to go. End of Story!
I got PCP and Neuro to write me letters, took care of all the refund, explained to everythong we wouldn't be going all the while trying to protect him. You know the story.
Now we're suppose to take a trip to Missouri to visit our son and family. I've been so excited to see my grandkids I'm acting like a nut. He was all ok with everything. He 'allowed' me to take care of cheap tickets, reservation for the shuttle to pick us up and take us to the airport. New clothes. Etc.
This morning before we got up he announced loudly and aggresively he wasn't going anywhere. I could go if I wanted but he wasn't going. Hollering around here like a mad-man. I just kept quiet (I'm really a saint, I know! smile) I've already told him the tickets are not refundable. I have ordered oxygen to be at our son's house when we get there. Also, I've scheduled a young man to come and live here while we're gone to take care of the house and Noche1.
I'm at my wit's end. I'm angry. I'm fed up. I feel stupid that I got conned AGAIN. Well, enough ranting. Just thought I'd share this. Dang!
Mawsy i had to cancel one trip to cancun and one 7day carribean cruise due to DH not going either. luckily had insurance too but like you say it took letters and time. i havent gone anywhere or made plans since. it stinks! divvi
I am so sorry Mawzy. I wish I had a answer for you but I have no idea what you can do. Is there any way you can get him to change his attitude by telling him the Doctor ordered him to see another Doctor and it is necessary to go? With my dh, Doctors orders carries more weight than anyone else's at this point.
I have had to cancel several trips - only to see relatives, but it's always at the last minute. He just gets physically (and mentally) sick when it's time to go. He does wonderfully well when we are home. The last planned trip was to be with my son who was being tested for kidney and pancreas transplant = and I so wanted to be there; and then on to see my 91 yr. old Mom who is in a NH -not near me. Day before we were to leave - he started- wasn't going, couldn't go, if he did he'd end up in a hospital away from home, etc, etc. You are so right divvi, it stinks!
Mawzy - is there anyway you can put him in a foster home while gone? I don't know your financial situation, but if he refuses this might be an option. You have a life too and those grandkids need to see you and you them.
That is a good idea Charlotte, if it would work. Wouldn't work here now but I know for some it does. I think you said once you moved away from family. If so, is it possible you could have somebody move you back? I know it is so great to be close to my family. Moving is a hassle I know.
Vickie--Exactly--Where does that come from? He said he wasn't going because the last time he went he got sick and spent 3 months in the hostpital back there. That's not true. He had a TIA and spent 2 days being tested. That's all! We were only back there for about a week--not 3 months.
I asked him what was wrong with him. Where are you sick. He responded I'm not sick because I take all my medicine like a good boy. You give them to me. Remember?
I just shut up. Not a word has escaped my mouth. I'm going to go on as planned and if he flatly refuses, I will explain that since he is so ill I'll have to put him in a respite home until I get back but I AM GOING TO VISIT MY GRANDCHILDREN.''
I'm very angry right now and don't want to say anything I might regret later on. But, he leaves everything up to me. He doesn't lift his finger but if someone is here, he will take credit for everything that is done.
A funny thing happened Tuesday evening. I had invited one of the young men who worked on the roof and house to bring his fiance for dinner. He is going to stay here and take care of our house and cat. DH went on and on about all the work he had done on the house. And the guy that actually did the work is standing right there. He's a pretty sweet guy and just agreed with him that it was a good job.
Something tells me that once he sees you packing and realizes that you are going he will fall into line. I am sure that somehow he realizes that at home he can function....being in strange surroundings is probably a challenge to him. Of course, you can't explain that to him. I know you are angry, I would be too. I would go no matter what I had to do.....big hugs.....
Mawzy, kind of funny- he tells me he'll end up in the hospital - which IS what happened a couple years ago. Had an emergency appendectomy 500 miles from home! In the hospital for two weeks; then couldn't travel for several more weeks! His short term memory is really bad - EXCEPT for that episode!
Vickie--wouldn't you just know that he would remember that one isolated incident? Sheez. DH can't remember the name of a program we're watching--will ask 20 times (true! not exaggerating) during the episode what program it is/ In the meantime, I've lost track of what's going on.
I'm leaving at noon on March 17. I'll be back on Monday, April 13. He wants to know how long I'm going to be gone. I told him a little better than 3 weeks. Actually, it's one day shy of four weeks.
Now he wants to know why I can't leave him here alone. I told him I'd probably get arrested for negligence if I left him here alone. He can't even fix himself anything to eat if I don't fix it. He will get into the cookie jar and eat that but he won't fix himself a proper meal.
He's already mellowing out. Asking me which of his shirts I'm packing. And which one of the suitcases is his.
I'm standing firm! Do I sound belligerent? Thanks for listening.
Isn't that so like a child, Mawzy. They are so self-absorbed. They can's think ahead it is only the moment. They think they can stay by themselves- but a few minute of being alone and they are looking for us. Unfortunately it is harder to re-direct a adult toddler than a young child.
I can't remember if you are going by air. If so, I would request special assistance with transport in the airport and loading.
Mawzy, you hang tight, girl! Good for you, you are breaking him down. When the kids were, young I used to pack a goody bag for them to take along on a plane or in the car. It contained hand held toys, snacks anything to keep them busy. Each trip was a different bag. This might work for our dh's also. Just a thought. You might want to pack an aromatherapy baggie filled with lavender or some such to keep him (or you) calm....M
Today he has asked me a dozen times what day we're leaving. He's wearing out our calendar looking at it. He also wants to know if I'm packing his suitcase. I told him I wasn't sure yet. (Am I getting mean?)
How do I get special assistance at the airport and on the plane? Sounds like a good idea.
He said he'd go if I played cribbage with him on the airplane. Again, I said "I'll think about it."
This is exactly like a 5 year old child and it's really breaking my heart.
Also, FYI, I heard today that my oxygen has been ordered and will be delivered to our son's home on March 17. That's just a little bit of alright, isn't it. Had no idea there was such a service. Boy am I getting educated!!
Mawsy, call your airlines and tell them your flight andyou need wheelchair for disabled. and then at checkin let them know you want someone to help get him on the plane. i would also get a letter from his dr to show at the checkpoints so you can stay with him! i like your answers mawsy, keep him guessing and on good behaviour until you are walking out the door -he will be up/down many times ove this before you leave so keep it quiet. divvi
Mawsy, they transported us to the gates with one of those nifty electric carts so be sure and ask for one of those and you can ride too. I think they will meet you near the check in places.
Once we get past Security, I feel as if we're home free! The TSA Agent took DH to a glass cubicle, away from me, (rudely insisting I stay BACK!!!) and when the Officer asked him where he was going, he replied "Damned if I know...I was just told to get into this wheelchair and be quiet!" Red flags. Officer thought he was being sassy and confrontational. I practically climbed over the wall to get in and tell them he cannot answer questions... Wish we had some way to note medical info on their tickets. I do not want to hang a big ticket around his neck with the ALZ. dx on it.
My DH would have answered that question the same way. I will get a letter from his PCP and call United. I dont' think he'll use a wheelchair--he's not disabled, you know. Has a great memory--better than most, according to him. (smile)
The wheelchair helps to "keep him on the right track" and move along. He doesn't move fast, won't walk beside me,..prefers to follow about 8-10 feet back..and I lose him in crowds. Thus...we request a wheelchair, and it works for ME!!
My husband has had a couple of changes with his FTD this week. This week I found out:
1. He can no longer brush his teeth on his own.
2. He needs step by step instructions on how to shave. He doesn't need to shave everyday--he has a full beard--but it was a shock when I asked him to shave and he went into the bathroom and just stood there. It looked like he knew he was in the right place, but not what to do while he was there.
deb-watch him with a razor. My husband always had a lovely beard. One day my daughter and I went to visit him and found the beard gone. Stupid me asked him why. His logical answer was-I finally found a good razor.
I 2 am noticing some new changes...I posted earlier on another thread that two weeks ago, he asked what a snack is...didn't put it together that it is a little something to eat between meals....then last week when we were talking about how hot is is in some parts of the nation and how cold it is here in our area( can't believe it is summer when it 45 in the morning and barely in the mid 60s during the daytime) I said those poor people must be " dying of the heat" and he didn't know what that meant. Then today for Father's Day I gave him a box of his favorite Sees Nuts and Chews...transferred them to a candy dish and at supper time he was not hungry..I looked in his candy dish and he had eaten 5 pieces..( if you are not familiar with Sees, they are kind of rich) and when I said he at 5 he countered he had only 3 today and 2 yesterday..I finally told him this candy dish was put out today...he was very confused about this. We have seen Pearl Harbor 3 times on tv today and Shawshank Redemption at least 2times today..and this does not count the dozens of times we have seen it before on TV.. He talked to all three kids today and has since been distant and grumpy a bit...and bossy...yet there is still so much complicated stuff he does know..geology, math, and so on... It was a very strange day here..cold for June, hard to imagine the longest day of the year is in just 2 days..it feels like winter..and I guess in a way it is.
And what I found out is that my wife used to shave her...wait, I just need a minute...I used to really like them and felt very close to them. My favourite thing was to stick them in my eyes and call out "Look in das periscope herr capitan!"...it starts with an 'n'. Anyways now they look like they have eybrows. All the way around. Like Grouch Marx. It's just weird.
I'm kidding. She's a redhead. It's like 360 degrees of little KEVIN BACONs!
Then there's the underarms. I'm braiding those. The cats bat at them as they swing by. And don't get me started on the legs. Like some Celtic pan running around when she's trying to avoid the shower.
I shouldn't talk. I'm growing a bear on my back.
Ah yes. The hairless ape. Not so much. Many years ago she noticed some blondish hairs on her upper lip and asked me if I thought she should shave. Thank god I said no. I'd be opening up a barber shop. I already do her hair. The Zohan of AD I tell myself looking at the thousand year old man in the mirror.
Wolf, Isn't that the truth...as they change in personality and the things they used to be able to do...then we have five minutes to scare ourselves to death when we see our own selves in the mirror and don't know who is looking back at us either. This "effing" disease changes not just the LO but wears us out and we end up looking 10 years at least older than what we really are..almost worse than an old car with rust...at least an old car can be made to look like a classic again...back to it's original luster and beauty, if not even better..wish that was the same for the human condition..
Looking at old pictures yesterday, so I could help DH remember our oldest son who was coming to take us to dinner. When I told him Bob called and is coming to take us to dinner for Father's Day, DH had no clue who I was talking about. We see him several times a month and he was just here Friday. Anyway, I noticed how much better I looked even 5 years ago. I seem to have aged over night. DH looks the same. He still shaves himself but not so good. Sometimes he needs a reminder.
Nancy B.... Are we married to the same man??? Hang in there, dear one... We can only hope it gets better or over with quickly..It's the constant change in their attitudes that get us.. Just when we are use to one, gosh, here comes another.. and Yes, he says I have changed but in the next breath says I have always been an evil person.. HUMMMMMM, kept me around for 50 years,,, wonder why???
I shave my DH because one day he just didn't have a clue as to what to do. Before that he was shaving his eyebrows off on a regular basis...but only one at a time! Everyday he loses a little more of his former self. Yesterday his favorite phrase as soon as he woke up was "I've never seen that before!" That meant for everything - shoes, toothbrush, shaver......... HE has me totally confused with the aide and will ask me where I am. Getting more frustrating every day.
I stayed in the bathroom with him while he shaved as I had to show him step by step. He doesn't speak much, just a few phrases, so it's difficult to know if he is comprehending what I say to him.
Oh my gosh, phil4:13 my hb shaved his eyebrows off about a year ago...said they were tickling his glasses!! He hasn't had any since then, oh well, just another loss and too weird!!