I am putting up some discussion topics carried over from the old boards, so if anyone wants to continue the discussion started there, they can do so here. I'm trying to make things as organized and easy as possible. joang
I know that I have been posting a lot but so much to talk about LOL I find that to carry on any in depth conversations DH he will all of a sudden say to much information just to much...I tried to get a couple of friends to understand that at times I feel I will go batty if I don't talk too a real person who can relate...I do have a couple of folks now that I can call and they will just talk...It is nice...Glad to have my family of Alzheimer Journey Walkers here ..Renee
I can echo your words , Renee. We have to learn a whole new language, called "Alzheimer speak" and I find I also have to be a detective, figuring out what my husband is trying to say. I am tending to shy away from outings with friends because I see he is so anxious all the time, afraid he won't be able to follow the conversation. It is a lonely life and extended family members don't get it. Inge
Yay, Inge, good to see you. I'm happy my instructions worked. To Inge, Renee, and everyone, check out the left side of the website, where it says Memory Techniques. There's a section in there on how to speak to your AD spouse so they will understand you. Sorry, I'm in a hurry - on my way to my Support Group, so don't have time to put in the link. I'll try to do it when I come back.
I just got a book - How to Speak Alzheimer's. If it's good, I'll let you know.
But I agree with both of you - even if WE learn to speak so our AD spouses will understand us, that still leaves US bereft of in depth, adult conversation. I'll write more when I return. See you later.
Gord has never been interested in the same things as I am but he would listen for a limited amount of time. Now, I find that telling him anything requires qualifying who almost everybody is and a lot of other things as well. He also seems to have difficulty hearing so he hears some of the strangest things. I must admit that at times we have a really good laugh about what he has thought I have said. However, it is frustrating for both of us.
My wife’s agnosia and aphasia (see below) have become very pronounced in the past year making it increasingly more difficult to have her assist in even the most mundane tasks. Last year with me she would oscillate between saying nothing at all to rambling on for 15-20 minutes or so without seeming to take a breath. Her sentence structure was similar to that of professor Irwin Corey but not as meaningful. Most often her sentences had a beginning but no discernible end. One of my hopes for the day care regimen was that it would slow or reverse the trend. Uh, no. Lately she has been doing some remarkable feats of doubletalk. She would speak her fragmented sentences but each word would be repeated. I don’t think I could do this if I tried. This doublespeak would appear randomly with no readily apparent impetus. It is very exhausting to try to follow her. I try to utter or otherwise indicate that I am following what she is saying. Although it’s not true, I am usually successful at convincing her that it is. When I am not she can become very agitated. Needless to say, any semblance of meaningful discussion has long ago left the building. Alzheimer speak has many dialects.
If we don't change direction soon, we'll end up where we're going. Professor Irwin Corey
Marriage is like a bank account. You put it in, you take it out, you lose interest. Professor Irwin Corey
Merrium-Webster Online (http://www.m-w.com/)
aphasia Main Entry: apha·sia Pronunciation: &-'fA-zh(E-)& Function: noun Etymology: New Latin, from Greek, from a- + -phasia : loss or impairment of the power to use or comprehend words usually resulting from brain damage - apha·sic /-zik/ noun or adjective
agnosia
Main Entry: ag·no·sia Pronunciation: ag-'nO-zh&, -sh& Function: noun Etymology: New Latin, from Greek agnOsia ignorance, from a- + gnOsis knowledge, from gignOskein : loss or diminution of the ability to recognize familiar objects or stimuli usually as a result of brain damage
Yesterday we were suppose to go out to dinner with close friends. We have done this for years every few months and in light of things at home, I really looked foward to it. EOAD wife also enjoyed the change of athmosphere. Then I get a call that friends wife can't bear to see my wife in her state of decline, no more dinners / visits but call and keep us posted on her condition. I say BS mabe I am selfish but I looked fowarded to a few hours to relax and unwind! They can't handle a few hours, I deal with it 24/7. I wanted to tell them to Foff but why put myself on there level. I had my oldest son watch his brothers and took her to dinner anyway. EOAD /AD are such long roads to haul and I looked to those few hours as a way to help avoid burnout. I guess this is just another aspect of how AD effects us all. I just needed to vent big time .
Tony, I am really angry about what happened to you. Do you have any "guy" friends you could hang out with on a regular basis - like once a month - while someone watches you wife? It is so important, as you say, to just relax and unwind, even if it's just for a couple of hours. joang
Tony you are going to find as I have some people are so STUPID I once tried to express one day to a friend what a hard time I was having you know depressed cried at everything, anyhow she said you know I think you need an outsider some one who isn't attached to this it is to hard on me he is my friend too. GIVE me a BREAK oh well I chalk it up to again they are STUPID lolol Renee
Tony, our friends didn't want to have my husband go anywhere with us. It hurt for awhile but I believe, "what goes round comes round" . I only hope I never am guilty of hurting someone because I don't want to be seen with them. Now he is unable to do any thing except vegetate in the NH ward. Our children see him seldom as it "hurts" too much and "anyway he doesn't know me" They didn't know their father either as an infant but he still loved and cared for them.
I am new onthis forum and m thankful for a place for spouses.
It has been getting more difficult lately to have my wife take a shower, either with me in the shower with her or with me on the outside guiding her. The deodorant only covers up so much until the time comes where a shower is quite necessary. If I leave her to take her own shower, she will be lucky if her hair gets washed, so it is necessary for me to be there. Anyway, after yesterday's shower, (which took 1/2 hour for her to join me--and partially dressed at that), I helped her dry off and gave her a bra to wear. Getting angry, she threw it on the floor and said, I don't care what you do. Angrier than I have ever seen her, she screamed, 'I don't like you anymore'. The pain tore into my heart and I felt so alone---my wife of 38 years left me standing there, not knowing what to do. I knew that it was the Dementia and I tried to prepare myself for these types of episodes, but I found out that one can't prepare..you have to suck it up and hope that she comes around to accept you once again.
Welcome to my website and our message boards. I am sure you will find the support, and hopefully, useful information to help you in your AD journey with your spouse. Everyone here understands what you are going through. joang
I cannot imagine what that was like for you, but one of our readers, Norm, does know. If you have not already read it, please read his letter - click on "previous blogs", and August 30 - A Poignant Letter from a Reader. I hope it will give you some peace of mind. joang
Unfortunately your friends are seeing the effects this disease is having on you and your LO. Their reaction is sad but common. In my case, it has happened with most all friends and members of my extended family. I have been forced to seek out new “friends” and “family”. This is my reality and may not necessarily be yours. You are way ahead of the curve by having found this site. Here you will find many others who understand what you are going through and not turn away from you. It's not the world you’re used to, but it may be the world you will have to get used to. Your new “friends” have looked into the eye of the beast and did not have the option of looking away. They truly do feel and understand your pain. Even if you can't find comfort here at least you will find understanding and that in itself can sometimes be comforting. Hang in there, friend, we're all in this together. Have to go, wife is home from day care.
Thanks for yours and all the other members on this site who have shown me support. I realize that as this AD progresses I am going to have to continue to adjust, and as in my last entry some thing aren't easy. I will just try to go at it one day at a time. I do get irritated when people tell me "Idon't know how you do it" but never offer to help., especially family! As many here already know, EOAD with kids, taking over both rolls in the family , running a business and school activites to name a few is more than a full time job. "I don't know how I do it"
Sorry I had to run. I have learned that there are far fewer consequences to pay if I try to give her my undivided attention. Although it is actually necessary to do some housework while she is here I have to be ready to stop at any given moment.
This disease destroys people and relationships on so many levels. The anger, frustration, anger, impatience, anger, intolerance, and sometimes hatred lie just below the surface of our very thin and thinning skins. As angered as I get with so many people I keep trying to remind myself that they probably know less about this disease than I do. My lack of knowledge of the disease makes me fear what she will do next and how I will react to it. I am often at a loss as to how to react to some new nuance that my LO presents me. The tears, the screaming invectives, they tear me apart. I just try not to react too negatively. I try not to react at all. I know that in the next hour or at least by tomorrow morning it will all be gone. I see something new every day. I learn something new every day. And I still feel I know nothing. I take Celexa, 40 mg. She takes Seroquel, 50 mg. Both our dosages were just doubled last week. Obviously, it's getting worse for both of us.
I remember a talk show in which a mother of a severely disabled child talked about the same thing. She said when people say to her," I don't know how you do it." she replies that had she been given a choice she would have turned the opportunity down. Having been given no choice, all she can do is get through one day, one hour, one minute at a time. So it is with us. Had God asked me if I wanted this, I would have replied, " HELL NO!!!".
It so painful to watch our LO decline. However, as the wife, caregiver, and "partner" I worry about my future. Who will care for me? I'm sure this is natural. John always took care of me. Now I'm learning how to mow the yards, fix the faucets, and check the oil. I'm telling every man I know that he shouldn't fix the leaky sink. Talk your wife or daughter through the process. Make sure that they know how to take care of themselved. Fortunately, I have always handled the finances and bills. I know some women that would struggle with that chore. That said, the lonliness is hard to take. Being alone and yet not alone. I miss my husband. I sometimes look at this man and wonder "Who are you and what have you done with my husband?"
Most days I feel like the existentialist man, ie "one person alone in the universe." I occupy my mind with detailed hobbies like computers, guitar music and history. I recently changed over to Ubuntu Linux instead of Microsoft Vista. About once a month, when wife M is tucked in bed for a several hour nap, I drive to the pistol range, visit with friends briefly and shoot a 100 or so shots at targets. I suppose that reminds me of happier days as a child on father's farm. It gives me a Zen like feeling of inner peace that lasts for days. I don't watch movies anymore. I organize family history stories and pictures that I have collected over the years into a seemingly endless online scrapbook. Thats online locally on my PC, not on the Internet. Its hard to be alone. The police use "solitary confinement" as punishment. AD has put me in virtual solitary confinement.
C yes that is it virtual solitary confinement....Just yesterday I was going to the grocery store for a quick run!!! The neighbor saw me . She wanted to talk a bit. She said I never see you leave the house and Larry never talks to anyone on the block when he goes to his shed ..II said well it is too hard for him to carry on a conversation with someone other than me and then that is a joke sometimes. I said where is there to go ?? He doesn't like to leave the house. he feels safe inside. She said you know my dad died of Alz. Well I almost wanted to hit here. I said well then you should surely understand!!!!But, then maybe not ..
Right now, I feel myself fortunate, in that my friends are still willing to spend time with us. But my DH sleeps all the time... and it's very lonely. today, my grandson had his Halloween parade at school, DH was too tired to go, but I went. I had to skip my daughter's halloween party because I couldn't leave him that long, but when I got home, he was still sleeping, and then he got up and had a donut, and fell right back to sleep again. I'll wake him for dinner, and he'll probably stay awake then, til about 10. it is very lonely. Thank goodness for the internet and these sites where I can relate to other people.
Yup; my AD hubby wants all of my attention all of the time; TOTALLY; with no others to interfer/distract from him. Gets belligerent and pretty much scares away any of my potential friends. Okay, totally scares away all my friends. Swearing, name calling, loud farting mid-sentence, ect. Interupting phone calls. I've learned that friendships must be outside my home (phones, hiking, coffee shops, internet). I make it a priority to keep them up. Solitary confinement at home with my AD spouse as guard. It is lonely. Internet is a wonderful companion. I tuck him into bed, make some green tea and visit with fellow late night caretakers. Thanks for being here.
I do exactly the same thing...tuck him into bed, make some green tea and visit with fellow late night caretakers. Thank God for this web site. I wouldn't think of going to sleep without checking the message board. It seems to be my life-line these days. Thanks to all, especially joan!
I am feeling rather desperate tonight. I said a while ago that our son came back from Japan with his wife and daughter so that they could spend time with Gord. Tim and I went for a walk yesterday and during the walk he told me about our daughter-in-laws hatred of our country, the apartment I got for them. She said she has no privacy and yet we never go there unannounced.....actually in the 3 months they have been here, we have never been invited. She also says that she doesn't see why they had to come as she has seen us outside laughing and joking with people and doesn't see anything wrong with Gord. I cried for the entire walk which was messy as I had been prepared for a lovely walk, not a crying jag. I just don't know how to deal with all this. Gord has fallen asleep after crying and saying he is afraid and doesn't know if he can stay here. I used the distraction idea and it seems to have worked better than my other method of trying to convince him that we have lived in this same apartment for 42 years+. I have been fighting tears since yesterday. I just don't know how I can deal with all of this. Gord just came in and perhaps the storm has passed. I have my fingers crossed. I hated just being so cavalier when he was crying but if I had stayed like I usually do, he would keep on talking about having to leave and getting more worked up. Thanks for listening to my venting.
My heart hurts for you. Sometimes we can do nothing about what other people see; we can only lean on the people who understand and are willing to listen. Maybe we cannot solve your problems, but we certainly can empathize with them and offer you a shoulder to cry on.
Thank you so much Joan. Gord has gone to bed now, hopefully for the night. Your advice about distraction was good and was the same as a friend whose husband's path closely follows Gord's. He is a couple of years ahead so she has had a lot of experience. You know the world is going on around you and yet you feel so lost and afraid and lonely.
And going back to the loneliness question; My friends are all fading away. When all this AD stuff is done; and I have walked the good walk (I hope) I will be ALOT older and ALOT more beat up inside. Who will want to be my friend then. How will I ever be able to start when this is done...
MsAbby, I think a lot of people will want to be your friend. You will have passed through one of the hardest paths a person can go through. You will be ready to reach back and help others navigate the way that you have gone. We will all be better people for handling this with grace and love . Hang in there. You are not alone.
Dear Jang: I am so so sorry for the words you had to hear from your son. I don't know all the circumstances, but I do know there are people like your DIL who cannot keep their mouth shut. Something comes into their head and flys right out their mouth. Your son has been placed in an untenable spot, the good wife does not come between her husband and his family--or his country. She must have known he was an American, that he had American parents! She appears shallow beyond words. But this is who he chose and he'll have to live with her, it's where his allegiance now belongs, but it won't be an easy road for him. It is so easy to say our children have to live their own lives, but I understand how their choices too often hurt us profoundly. My daughter married a European and lived there for decades. Eventually I adjusted to it, but not w/out buckets of tears and anguish. Chances are things will work out, he'll stay as close to you as he can. Always keep your arms open for him. But for now, Gord is your primary concern--and that's surely not easy either. I extend my hand in understanding.
Thanks Bettyhere, I feel sorry for our son. He is in an untenable position. He is just waiting for an ultimatum for her that either she returns to Japan with him and his daughter or without him. I feel quite sure that would be the end of our relationship with our granddaughter. Our son would call every week as he has done for the 8 years that he lived in Japan but that is not the support that we need. Also, a visit to us in Canada every 2 years would not help. I feel totally helpless. For all of us, our lives are in such turmoil and when you add things like this, it stresses you completely. I seem to have no luck as a grandparent. Our older son has to constantly fight the mother of our 8 year old grandson . She is always defying their custody agreement and we haven't seen him for 3 months now. Who said that life wasn't fun.
Good news for us!!!!! Our son called and asked if we wanted to pick up our granddaughter from school. RESOUNDING YES!!!!!!! Perhaps things are thawing a bit. I will hope so.