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Joined: 1/14/2015
Posts: 40463
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Originally posted by: arm
Just really need to vent. I have had to make an appointment for the cardiologist. I am having pains and am really not dealing with my DH well. I have dropped 15 pounds in the last year. That may not seem like a lot but I did not weigh much to begin with. I can't sleep, for fear of my DH getting up at night. So much has happened in the last year. We had an argument yesterday, because it is hard when you are trying to tell someone how you feel and they tell you to get over it. Then the guilt came on, when he got up in the middle of the night and was urinating in the corner of the bathroom. They bring up everything that has happened to them, over and over. They accuse you of taking their freedom. They tell you to leave and that everything is theirs. They worked for it and you have done nothing. We have been married 27 years on 9/8.
He is not suppose to drive anymore and has actually done that. He is not suppose to ride his bike by himslef anymore. I found out the other day he rode it on a 2 way rode that has lots of traffic to the store while I was teaching at preschool for 1/2 a day. His mom knew and did not tell me. He said he will ride into town when he wants on his bike because that is the only way he has to get around. We live outside of town about 9 miles one way, and heavy traffic. I take him where ever he wants to go. I never go out with out him except to preschool.
He tells me that I can do what ever I want. Well, no I can't. Everything has to do with what he is doing and how his day is going. I cannot bring anyone in undercover either. This EOAD is the worse. They know enough in certain stages that you can't get help. He knows enough to laugh at me when I get frustrated. Nothing that is happening to me is as bad as his life.
We are suppose to go with his sister and mom to the beach next week, for a whole week. Well, I have had so many problems in the past from them this is not something I look forward to. The only reason I want to go is my step-daughter and her husband and grandbabies will be coming and I have not seen them since Easter. It would be great to have that week to myself. But I cannot trust his sister or mom from starting things with him and me paying for it when he gets home.
I was born and raised in Ohio and moved to Georgia when my parents were transfered. We were talking about Ohio the other day and he aruged he knew more about things there than I did. This is common. If someone went to Oregon he has been, he has not. If someone travels a lot he use to travel a lot. He did not. I am so tired.
Thanks could go on and on!
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Originally posted by: SherylS
You've already learned that you can't argue with him. Get some anti depressants for yourself and learn to say "is that so?", "how about that", "hmmmm", "Wow" and "I never knew that!". Don't let him get a rise out of you by correcting him or appearing to argue, you are losing.
Maybe when you are on vacation next week, just take a book and let them take care of him. That's what I did when my kids were here last week.
I just sent him with them on all the jaunts they wanted to go on (bowling, to the lake, even to the grocery store). I just told them I'd see them when they got back and I wanted to rest.
Nothing like a little one on one for others to get the picture. Stay and play with the baby and tell him to go on with them. THAT would be a vacation and good respite for you. Get you some anti depressants before you go. That will make it easier to just let them do it. Take some of the guilt off of yourself. You can't do it all!
If they "don't think he's very bad" they should have no problem taking him with them or entertaining him. The more the better. They'll get the picture by the end of the week.
heh, heh, heh
PS: I'd be letting the air out of those bicycle tires!
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Originally posted by: Cheryle Gardiner
arm, I'm so sorry all of this is happening. So much sounds like my husband and I know how frustrating it is.
As far as the car, you MUST keep the keys where he can't find them. I carry mine in my pocket and have given the keys to his truck to his son. I'd also get a good padlock for the bike and hide the key - maybe keep it on your keychain.
As far as the "tall tales," that's one of Jim's good ones, too. He told a friend that we'd been to China! I was told that confabulation is common - it's not that they're lying, they do believe these things they're saying; a couple we're close to had actually been to China and Jim heard them talking about it and thought we had been, too.
The hard part is not arguing. As SherylS said, just make noncommittal responses, or ask him what he liked best about Oregon. There's no point in arguing because he can't reason. And there's no point in talking about how you feel because his world is limited to him. I broke my hip the same week Jim had his strokes, but he thinks that I can still do all the things I used to do. It's a lot like a baby and their self-centered world.
And I related to the weight loss; I've lost 30 pounds in the past three months. I needed to lose it, but it's not a recommended "diet," as you know.
Do take care of yourself! The appointment with the cardio is a good idea, but it's probably "just" stress. An antidepressant is good (I'm on one) but it takes several weeks for them to kick in. Take SherylS's advice about your beach week, too - let others handle him for a while.
You've been at this longer than I have, but I did find "Creating Moments of Joy" to be very helpful. Mostly it sounds as if you needed to vent and someone to talk to. Do you have a religious leader or can you get an appointment with a mental health counselor? It helps to talk to someone who's there for only you.
I'm sure others will have other ideas, but the issues with him driving and biking alone need to be taken care of first!
Blessings to you.
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Originally posted by: arm
Thanks all for the suggestions. I will let them take care of him. The grandbabies will be easier to sit with.
GrumpysGal
I am sorry you are going through this too. My DH was diagnosed with MCI at first then it went to Alzheimers. We have been dealing with it for almost 6 years now. My husband still feels worthless and that he cannot do anything anymore. We purchased a swing to sit in on the back porch, I read the instructions and put the screws in and let him tighten them. He still has alot of strength in his hands. He really enjoyed that. Don't get me wrong it took a lot of patience because I had to remind him he missed a few. My husband wanted to look for a job at first and finally he quit talking about it. I told him he was retired and had to many things to do around here and that we needed to visit the kids out of town.
You will never get used to it. Well maybe some do but I have not. It is hard not to look at them and see the same person as before. I think it is the feeling of being alone that is the hardest for me. He is here but we cannot carry on a conversation anymore. He still can talk, but not keep up with the subject.
The bike issue came up after he had 2 accidents. I agreed that he could ride it on a quite road right down from our house. This helped with the situation of not being able to drive. But now he is taking off to other places. I haven't figured that one out yet. I could let the air out of the tires, but then he still could put it back. I cannot get rid of them, I am still paying for getting the guns out of the house. Hard choices one at a time. I know that God will show me how to deal with the bike, as he has other things. Even if you explain to them why they should not do something, they will try again in a day or a month from now. It baffles me how things come in cycles. We are fine for weeks and then it blows up. Haven't figured the cycles out.
I have tried not to argue with him, but sometimes when those buttons get pushed and they follow you around taunting you it is hard. I had a lot of people in the house this weekend so he was a lot out of sorts.
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Originally posted by: GrumpysGal
Thanks arm, I appreciate your information. I do go to a support group and it does help. My biggest issue right now is getting rid of the guns. My son is helping me with that one. Gonna get a safe and not give DH the combination. I know I will catch he!! for it but I am prepared. Only have one more car key to get from him. One step at a time. Going up to our Lake house on Wed. for 2 weeks. This will be our first time with me driving. His license was revolked. He is not a good passenger and nit pics EVERYTHING with my driving. Is slowly getting better with it. It is a 4 hour drive, I dread it. He started on Prozac Aug. 27 and does seem a little less angry. We'll see how it goes. I, too, miss being able to "talk" with him.. Hard, too ,that he can't help me make decisions, he was always they decision maker and handled paying bills, etc. I see from all the posts I am not the only one in this new life. Some days better than others.
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Originally posted by: Cheryle Gardiner
GrumpysGal, I avoided the gun confrontation by having Jim's son get all of the ammunition out. The guns were pretty obviously there and he would have none they were gone; the ammunition was locked away, so he never missed it. Maybe that would work for you, too.
Good luck with your trip. If he's going to be a backseat driver, tell him you're going to make him sit in the back seat - and then remind him each time he does it! But only if he has a sense of humor. 
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Originally posted by: Moppy
[/QUOTE]I am so tired.
Thanks could go on and on![/QUOTE]
Ah, Arm I wish there was a magic wand to make the issues you describe go away. There have been so many similar episodes before and after my husband's diagnosis. We no longer argue because I have learned it never solves anything, makes no difference and the topic comes back again and again. I hope his Mom, sister and daughter are active in your lives and give you quality time no matter how much to recover.
Yoga helps me. Researching the disease and applying what I learn to our situation helps me get thru each day. Turning the phones off helps me. Watching dust grow instead of cleaning it helps me. Remembering to get as much sleep as I can helps me get as much sleep as I can.
I have learned my husband is unaware that words hurt whether in the grocery check-out lane, parking lot or after the lights go out at night.
I keep all of our vehicles' keys in my purse and hide my purse....whichever car or truck I drive him around in for the day stays in my pocket. Talk to him primary care physician or his neurologist about the bicycle. They should make suggestions to remedy the dangerous situation he places himself in.....or ask his son to take it home with him.
Come back and vent when you need to. Take care of yourself.
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Originally posted by: GrumpysGal
This is my first time on. I have been browsing awhile but I have a question. My husband was diagnosed with MCI July of 2010. By January this year it went to Alzheimers. He turned 61 this past April. Anyway, he wants to ride his bike and can't understand why he can't. He has a one track mind so changing the subject doesn't work, neither does explaining the reason. He also wants to get a part time job, he feels so useless. But, I don't know what kind of job he could get. Any ideas. Arm, I can relate to many of your problems. This is really hard for me to get used to.
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Originally posted by: lurk
Hi Arm,
Last year we had the driving discussion on the board, and I was told by some of the good members that I needed to take away the keys NOW. In my opinion, it wasn't time, and I believe I did the right thing, although I may have been lucky that he didn't do harm. However,NOW IS THE TIME!
I have in my drawer a form from the Department of Public Safety Driver License Division in our state. It doesn't have a name. I got it where we get our driver's licenses. On it we describe actions or known impairments that we have observed. They will do the rest.
I had foot surgery. My plan was to do the deed in between being able to drive again and his birthday, which is in December. I have been planting the seed with him and I have begun driving us both to the mall to walk and to drive almost everywhere.
Yesterday, I was driving and we were waiting for a red light to change to get onto a busy street. After awhile no cars were coming, and he said, "If it were me, I would just go now." I said impatiently, "That is the reason that you won't be driving very long. You will have a permanent chauffer."
I've told him several times that he would not be driving past his birthday as he wouldn't be able to pass the test. I don't think my words have registered much, but maybe they will come back to him when he receives the letter that he must be tested.
Here is the kicker. In our state, driving with a suspended license results in a $1,000 fine and a mandatory 90 day jail term. So once his license is gone, he will NOT BE DRIVING. His days are numbered.
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Originally posted by: Cathy J. M.
quote: Originally posted by GrumpysGal:
He also wants to get a part time job, he feels so useless. But, I don't know what kind of job he could get.
Some forum members have had good luck arranging for their spouses to "work" at a day center. The staff go along with the idea and it gives the person a place to go, a reason to get dressed and out of the house, etc.
Think too about what hobbies and interests your husband has had from childhood on. There may be some things you can adapt to his current abilities, or things he could do as long as someone does them with him.
Example that lots of guys might like: Building bird houses to donate to an organization that he believes in? (Lots of groups want things to sell, to raise money.)
If he gets involved with a creative process he really enjoys and finds satisfying, the idea of being paid to do it may lose some of its importance. My partner had to give up woodworking, but for a couple of years now has been making collage note cards nearly every day. I still haven't developed a market for them, but she is patient about this and just loves doing it.
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Originally posted by: arm
GrumpysGal
You don't need to appologize. You did not get the conversation off track. Everything that we discuss is benificial to all of us. I wish I had thought of the safe for the guns. I did have the ammunition taken at first and he did not know. It was when he kept moving them that I took them from the house. He also got very depressed. They are at his mom's house now. I could have told him I bought the safe for them and important papers and to keep out of the grandchildrens way. But hindsight is best. I am on a learning curve right now. But I think all of us are. I hope you enjoy your trip.
I do have some friends and family that come and take my DH golfing at least once a week. That gives him time with men and me a break. I tell him he is playing for fun and enjoy when he says he cannot play well.
To bad we don't have a manuel on how to handle different situations. There may be one, but I don't think he could cover everything.
How did you get the license revolked? My DH's doctors will only recommend not driving and not come out and tell him not to. I know there is a form that they can fill out. I guess I need to do that.
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Originally posted by: GrumpysGal
Cheryl, thanks for the idea about the guns. May consider that one. Gonna try the back seat humor too, DH does still have a good sense of humor. Will post how the trip went when I get back, no computer where I will be.
I love this forum!
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Originally posted by: GrumpysGal
Thanks Cathy, I will see what I can do for him
Arm, I am sorry that I got things off track from your post. I hope you are able to find something that helps you. Don't forget to take care of you. I am not good at doing that, never have been. But, I know I need to so I can take better care of him.
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Originally posted by: Snorky
Another point I was told when my DH had to quit driving is that if you knowingly let him drive and there is an accident, you can lose everything you own. Because you "let" him drive knowing he shouldn't. At least I was told that.
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Originally posted by: GrumpysGal
Can't get DH to do anything yet, won't even mow the lawn (now that he fired the gardener). Dr. thinks once the prozac kicks in it may help. As far as his license- In California, all patients diagnosed with Alzheimers are reported to the Dept. of Motor Vehicles (DMV) They have the patient take a written test (which DH passed) then have the Dr. fill out a form. Depending what the Dr. say, they may be given a behind the wheel test. Because of Dr.'s report, my DH didn't get any further. No, he really didn't need to be driving anyway. Had some scary moments. At least he blames the Dr. and not me. Oh, he blames me for everything else, including making him go to the Dr. No winning. Still nervous about the trip, I don't drive freeway much and have never driven in the mountains. First time for everything I guess, new adventures.
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Originally posted by: Cathy J. M.
quote: Originally posted by arm:
To bad we don't have a manuel on how to handle different situations.
"The 36 Hour Day" covers just about every situation, and the index is very good so it's easy to look up a topic such as driving.
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Originally posted by: Cheryle Gardiner
To me, the driving thing is huge. As my stepson said, if he kills himself, that's one thing; if he kills a child or someone else, that's entirely different.
It was hard to not let Jim drive. He has a new truck (only had it a year when he had the strokes) and will go to the garage and just sit in it sometimes. His son and mine have taken him places in it a couple of times, but it didn't seem to help. The last time his son offered, Jim chose to ride in his son's car. Now that he's going to be placed that argument is over.
Please do think of who else might be hurt of killed when someone impaired is driving. That kind of guilt would be intolerable, I think.
Blessings.
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Originally posted by: GrumpysGal
Thank you everyone. Will be back in 2 weeks (earlier if I can get computer access).
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Originally posted by: Nora W.
Hello Everyone! I certainly know how you feel. At times it feels as if I just can;t take anymore - especially when my husband says mean things for no apparent reason - but then I just say a silent prayer, take a deep breath, and then thank God for the time that we have had together. We have been together for 38 years - married for 31 years - and we have had a good life. I keep reminding myself that neither of us asked for this and we will just have to continue to lean and depend on the Lord. Continue to take one day at a time and VENT here all you need to. We have been on this journey officially for 2 years (not sure how long he had it before he was diagnosed)and each day is harder than the one before. Hang in there!
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Originally posted by: arm
Well, found out today that my DH's GPS in his truck quit working. No problem there because he is not allowed to drive anymore. His mom, who is 83, took him and bought him a new one. What does she think she is doing. I think she is having problems like he is. What do you need a GPS for when you are not suppose to drive. Then she tells me he wants one for his bike so he can go further on it. He is not suppose to ride his bike anymore either. He should not be driving on main rodes in a car, motorcycle, or bike. I am suppose to spend a week in Hilton Head with these people. I don't know if I can.
Last time his GPS broke, when he could drive, it was a matter of hitting a reset button. He could not do that. I fixed it. He told me he bought it. She told me she did. Then he told me he ordered it. Well, it didn't come in our mail. It was not on our credit card. I think she should take care of him. If she wants to encourage him driving then she can be sued when he has an accident or she can be to blame when he gets hurt. Because you know if he gets hurt it will be my fault. He just says I want to control him and everything. She is always the best. No wonder she lets him do what ever he wants.
JUST VENTING MORE!!!!!
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Originally posted by: JAB
Hi, GrumpysGal, welcome to the forum.
You may find some useful tips on traveling with an Alzheimer's patient at:
http://www.alzcompend.info/?p=133
The suggestion that your husband "volunteer" at Adult Day Care is a good one. We've also talked about other kinds of (real) volunteer work that early-stage dementia patients may be able to handle, and enjoy and feel worthwhile doing:
http://alzheimers.infopop.cc/e...=853300524#853300524
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Originally posted by: jfkoc
ARM...perfect, send him home w/mama!!!!
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Originally posted by: CeC
I am so glad I found this site, I am having one of "those times" with my husband. Already been through lots of stuff I see here, from wanting to get a job to the driving stuff. I am not sure what a lot of the stages of AD even are, he was just diagnosed. Some mornings he seems to be OK but by the afternoon he is confused and just isn't himself. He did quit driving except where we live, very rural area, almost no traffic and will just drive over to the barn. My 2 biggest problems are how "clingy" he is. I can't even go to the bathroom without him coming to look for me. That and he wants to tell me how to drive, watch out for this, there is a bump in the road, there is a red light, I am sure lots of you know what I mean.
Do any of you live in the country? The nearest town from us is about 15 miles. Well, he just got up so I have to get off of here before he wants to check out what I am doing.
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Originally posted by: JAB
quote: Originally posted by CeC:
Do any of you live in the country? The nearest town from us is about 15 miles.
I don't suppose living smack dab in the middle of San Diego counts ... 
Hi, CeC, welcome to the forum.
I am amazed and appalled that Cathy left Jolene Brackey's book, "Creating Moments of Joy", off her list. It's my favorite -- full of very practical, simple advice on how to make our loved ones feel loved, happy, and safe:
http://www.enhancedmoments.com/
Click on "Products" and scroll down.
You may also find some free resources on the web, such as the Newly Diagnosed article, helpful:
http://www.alzcompend.info/?p=121
Also, Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience":
http://alzheimers.boomja.com/A...xperience-59731.html
And Coach Broyle's Playbook:
http://www.alzheimersplaybook.com/
The link for the free .pdf is in the upper right-hand corner of the page
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Originally posted by: Cathy J. M.
quote: Originally posted by CeC:
Do any of you live in the country? The nearest town from us is about 15 miles.
Welcome to the forum!
We live in the woods, about 10 miles from the nearest town -- but we do have helpful neighbors. Our church is building some housing units in town, for older people -- which will be ready in about 3 years -- so I'm thinking we might be able to move there later on. Meanwhile, my partner enjoys seeing deer in the yard. (We no longer have a dog, so the deer come very close to the house.)
BTW, here are three good books for learning more about how to help someone with AD:
"I'm Still Here," by John Zeisel -- very positive and encouraging
"The Alzheimer's Action Plan" -- covers medications and a lot of info as well as caregiving
"Learning to Speak Alzheimer's" -- about how to adapt the home and interactions to make the best possible quality of life throughout the disease.
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Originally posted by: Starling
If your husband is urinating in corners, that is the beginning of stage 6. He is a LOT sicker than you probably think he is.
Forget about driving, he can't be left home alone for a second anymore. He might be a fall risk as well. (Which was true for my husband about the same time he couldn't locate the bathroom.)
And I bet you are sleep deprived. It may be time to place your husband so you can survive. No one can survive without sleep, and your body is trying to tell you something. Time to listen.
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Originally posted by: Lorita
Welcome CeC,
I'm glad you found us, too. I browsed for several months before posting a message. I've learned a lot and have requested a couple of books from our small library that were suggested.
We live on a ranch and raise cattle. The nearest larger town is 25 miles away but there is a small town closer where we get cattle feed and most everything we need. It's very quiet out here and we have a routine and my husband is quite content for the most part. Twice during our very hot summer he decided he needed to go somewhere - didn't know where or why. I have the keys to ALL the vehicles hidden so he walked off. You might want to keep your keys hidden and keep an eye on him. They seem to be just fine one minute and a short time later are not. I know you and your husband do enjoy watching the deer - we see them occasionally. My husband enjoys going out and sitting in the late afternoons watching the cows and their babies. It's very relaxing. When I get stressed I find calmness doing that and sometimes just going out and sitting on one of the pond dumps in the pasture. You can find ways to help relieve stress. Again, welcome.
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Originally posted by: JAB
quote: Originally posted by Nora W.:
Hello Everyone! I certainly know how you feel. At times it feels as if I just can;t take anymore - especially when my husband says mean things for no apparent reason - but then I just say a silent prayer, take a deep breath, and then thank God for the time that we have had together. We have been together for 38 years - married for 31 years - and we have had a good life. I keep reminding myself that neither of us asked for this and we will just have to continue to lean and depend on the Lord. Continue to take one day at a time and VENT here all you need to. We have been on this journey officially for 2 years (not sure how long he had it before he was diagnosed)and each day is harder than the one before. Hang in there!
Hi, Nora, welcome to the forum! It's nice to see you've finally ventured to post. What sort of dementia does your husband have? How far along is he? And -- aside from lending a sympathetic ear when you want to vent -- what can we do for you?
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Originally posted by: Ben's wife
Today has been one of 'those days' for me too. I have been through a few things some of you describe. We solved the driving situation with his son writing to Motor Vehicles. They then sent a letter stating that he had to have a form signed by a doctor. Of course, once that letter was received, they informed him that he had to surrender his license.
As to guns, my husband had a revolver that he kept in the closet. His son removed the bullets (he kept it loaded) and replaced them with blanks. He still has the security of thinking he has 'protection' but without my worrying. Right now he is driving me crazy with the things he does - ran a water pump dry & ruined it, now we have to replace the pump that was only 2 years old. I had to bring the cat's litter box upstairs & put it in our bathroom due to water in the basement where it's usually kept. About 5 times now I saw that he'd cleaned the litterbox, found he has been throwing it in the toilet. I must admit I screamed a bit when I repeated for at least the 5th time that it will clog up the pipes and I'll have to call the plumber. I can't be everywhere at once, but I have to try and watch his every move to prevent more damage. I took the litterbox out of the bathroom, hope the cat can find it. My son, grandson & I have been working in the basement trying to get the water out - our basement doesn't usually get water, but Hurricaine Irene did a powerful job in NJ. When I tell him we're going to have someting easy for dinner because I'm bone tired, he asks "What from?"
He goes to day care one day a week, all I can afford. When he complains about going I tell him that he has to go and help the other AD patients. So far, that's working.
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Originally posted by: Starling
On book that needs to be read early on, way before you think you need to know this stuff is Hard Choices for Loving People. The author is a hospice chaplain, so you know he has thought out all of the moral and ethical points in what he is telling you. You can read the book online, or buy a paper copy. To read online just hit the PDF link.
The reason I want you to read it early on is that you need to get all of the family on-board for when the hard choices come. And some of your children might need some time to understand. In my family's case it was my SIL who needed the time, but in the end did understand.
http://www.hardchoices.com/#hc
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Originally posted by: Mimi S.
Hi Nora and CeC,
a very warm welcome to you both. You've been provided with some very good material. And when you can't take it anymore and need to talk with some one, please call the help line 24/7: 1-800 272-3900
The chat room is also a good place. However, notice there are two different sections at the top. If no one is in the top one, go to the next, if there's people there and just say your new and need to have a serious talk about problems. Hopefully, someone will offer to meet you in the first one.
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Originally posted by: CeC
Thank you all so very much. It just helps so much to know that I am not the only one facing this. We don't have any family near by but have some wonderful neighbors that I don't know what I would do without. We had just moved up here from Texas 3 years ago to help care for his mom and she passed away the next year. So here we are, new to the community and have no real ties to the community. I should have realized that he was having a problem a long time before I did, guess I just didn't want to admit there was a problem. He didn't want to go to a church or join the Masonic Lodge up here, things he enjoyed before. Makes for a lonely existence.
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