I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I welcome all comments. I would like to know if if any of you have had an experience similar to mine.
I think your acceptance should come with a halo. We are nowhere near that phase, but I can not imagine the patience it would take....
I don't know if Sid is still able to read or write. I have read about several tools that sometimes help with the repetitive questions. One is having a very large calendar placed in a prominent spot, to list what's happening each day - and you X through each day that is completed. You do have to train DH to go to the calendar when he has questions about what's happening.
Another is a spiral notebook for DH. He can write answers to his questions in the book, and again has to be trained to use / rely on the notebook.
These won't work if he can't read. But if he can read, but not write - maybe you can do the writing...
Joan, I think I am almost there (99%). My DH is now to the point where he is quite docile (he still occasionally gets angry, but nothing like he used to). He thanks me for being his wife & he says he is sorry numerous time a day when he thinks he has (as he puts it) “screws things up”. He worries almost to the point of paranoia that he is doing things wrong or that he is doing things I don’t like. I still get frustrated when he asks the same question & sometimes I might have an edge to my voice, but I am definitely getting better at not taking “it out on him. I guess your heart finally caught up to your brain. Mary22033, the calendar & posting things on a wipe off board worked for a while, but not anymore. My DH can still read, but he doesn’t comprehend very well & I know that he would not comprehend daily activities printed out for him. Thanks for the ideas though, because that did work for us early on.
I think I'm almost there too - like Elaine H, maybe 99%! He never get angry - sometimes after he asks a question, he will say - Oh, I just asked you that, didn't I? I usually just smile. Or, I will answer it again. Calendar and posting things doesn't work either anymore. He still reads, but not sure how much he comprehends - although some days are better than others. He just gets so frustrated at himself, but tells me many times a day how much he loves me, how much he appreciates what I do for him - and that nobody knows what I have to go through taking care of him! How true -
"They" claim patience is a virtue. How virtuous we caregivers all are. My dh hasn't been too bad about asking the same questions repeatedly. It happens often that he begins to ask but changes his mind because he has a tough time putting sentences together. It is no wonder someone would lose patience and say something. It isn't a normal way of speaking. I don't remember our children, when small, asking the same thing over and over again.
I don't write down an "activities list". I don't think dh would bother reading it and, if so, comprehending it. I do keep a large calendar with important stuff on it. DH handles that pretty well. I think dh is finally accepting that I have to handle decisions and most other matters. Acceptance is really something he has had a tough time with.
House was getting pretty cool with the cold nights we have been having. Ordinarily dh would be always standing in front of thermostat reading and turning furnace on. Now he is at a loss as to how we would turn furnace on. Didn't even complain he was cold and I know he was. Doesn't even know how to operate the thermostat. I turned it on this morning to get the chill out and he was so happy I was able to do that. It has to be terrible to realize you have lost abilities and are dependent on someone else for even simple things. So often I put myself in his shoes and that helps me to be more patient and uncomplaining (but not always).
Yes Joan, I can relate. How often I have to "bite my tongue" and keep my thoughts to myself. It makes for a much more peaceful environment. I save my screaming and crying for when I am not in the same room. I called this the path of least resistance. I just pray everyday that he will be content and have less confusion. Yesterday was the first time I noticed his walk has changed. We were in Home Depot and on the smooth concrete floor I could hear his shoes doing the AD shuffle. I had to swallow the lump in my throat and blink real hard. I hate this disease!!
I know what you mean by finally accepting the situation. I am sitting at the breakfast table answering my DH's repetitive questions about the food in front of him. In the last couple of weeks he has gone downhill esp. in regards to eating. I have to tell him to but each bite in his mouth or he will just "play" with it. He will ask if it is for someone else or what do you do with this and I am getting pretty calm about saying that it is his and to put it in his mouth. Some meals take almost 2 hours to get through. We have gone out for dinner for years on Friday nights with a group of friends. Told them this week that I think that is coming to an end. It is just too stressful for me to try and visit with friends will making sure he gets enough to eat. It's going to be a long winter!
I'm getting better and better, but still not 100% there yet. I'm sort of where Elaine and Vickie are, I guess. What is most painful for me are those times when I'll find my wife sobbing, ask why, and she tells me it's because she has just realized how much she has forgotten or can no longer do. So sad.
Frankly, I'm amazed at myself and how patient I am about answering questions over and over. I suppose it's partially because I feel so sad for him it's hard to get angry at him for asking the same thing over and over. I have to admit when we're hurrying to go somewhere and I have to answer the questions over and over my stomach feels so tight I'm afraid I'll explode, but I don't. I keep it to myself. A year or so ago I was here on the site telling how I go into the shower close all the doors, while he is outside, and screamed as loud as I could. I don't have to do that anymore. I'm not crying like I used to, I only feel sad and get teary-eyed when I'm alone at night. Why I'm like this, I can't explain. But, I'm so relieved that I am. Two years ago I was terribly afraid how I was going to handle the different experiences we would be going through. I hope I can keep it up. I hope I'm not kidding myself. There ARE times when I'm afraid, having to handle all of the decisions myself. Then, I sometimes feel like I'm going to lose it. There are also days when I feel down. I tell myself I'll feel better tomorrow and if I am unable to do anything that day, I don't worry about it. I'll handle it tomorrow. This works for me, so far. Again, I hope I'm not kidding myself.
Guess I must be the bad guy here! I just seem to get more angry with this disease!My dh does not repeat things,he does not talk too much at all.But it is all the everyday living things that I have to repeat every second of everyday. I think tis will kill me before I accept it.
no, Bak, you aren't the bad guy here. You are just having a tough time right now. What you are doing is something only a lo will do. My prayers are with you.
Yes, acceptance does NOT equal "liking it"...it doen't even equal "always being nice about it"! After all, we are humans, with our anger and frustrations at this awful illness, and a final acceptance is what we try to achieve, because it makes it easier to cope, maybe. And sometimes we fall off that "acceptance" wagon....then we get back on and continue to do our best to STAY on... But it definitely is tough, and no one should ever believe because they have a problem accepting AD and all that goes with it, that he/she is less of a caregiver. We will get through this journey together.
I am beginning to think that "acceptance" is not the word we are looking for. It is more like "resignation". Acceptance is too nice a feeling. When I resign myself to something it is because there is no other way to dealing with something. We deal with it the best way can; don't like it but it is there and ours to handle. Life has dealt us a blow and only love will carry us through. I can't imagine putting up with all the misery without love
We had a new lady at our support group on Wednesday. Her husband was newly diagnosed. She kept saying that she asks him if he doesn't remember. All 20 or so women around the table told her that word has to leave her vocabulary. She cried that her life was not supposed to be like this. They had plans for their retirement. Understanding and resignation was on every face. Another one starting the journey. How very sad.
Yes it is sad to see someone new have to start living the life of caregiver to this d--- disease.I wish NO ONE else ever had to face what we are going through.I personally think this is the worse kind of illness because it is a slow death that destroys two people NOT just one.And the hell each of us and our LO goes through is sometimes unbearable.But we have NO choice in this!!
I remember seeing a mother of a severely disabled child on some TV show. The host asked her how she could possibly deal with such a burden. She said that people asked her that all the time. But, she said , she had no choice. Given the choice, she would have declined. Having none, she did the very best she could to look after her child. I guess we are the same.
I wake up every day with a trembling feeling and think what in the world is the matter. Then I remember FD left a year ago in July and he isn't coming back ever and I can't take it. I need him he was the "decider" to quote a former president. I depended on him to help me when times were tough. Times are tougher now than I ever imagined they could be. So many financial problems I can't get a grip on. Family problems that are overwhelming and only me to try to figure out what to do. One son is my sounding board and he keeps saying "Mom we'll get through this". Bless him but then he wants to talk about anything else. I'm not patient I expect too much and I'm remorseful. FD tells me he is leaving or I have to leave that we aren't going to make it together much longer. Soon we'll be married 60 years. Can I imagine life without him. He never said anything like that before all this began. As someone else has said what choice do I have but to accept what is. I appreciate reading other's thoughts. Thanks for this forum.
I have been reading a lot on this website over the course of the last few months-what a God send it is. It is so painful but so reasurring to know that I am not alone on this horrible journey. I finally "resigned" myself to the fact that the same questions will be asked over and over again even within minutes. I no longer get angry.
I wish I could accept it but I don’t believe I ever will. There have been a few times when I maybe, kind of, wished I could. But it just isn’t in me to. To me accepting it would be giving up, and that is something I don’t think I can do. I just can’t do that. That may be my biggest weakness as a caregiver. I will fight this right up to the last second and I will hope right up to the last second that somehow we will make it through it. I know that is unrealistic. I have read everything I can and I understand that it is 100% fatal. I know how it will end. And I know that I need to accept it. But it just isn’t in me to.
Jim B, this is what keeps us trying to keep them as healthy and comfortable as we can, and that is a good thing. It's hard on the care giver, but it would be harder to not be true to your nature and not to do it. Acceptance does come with death. It's swift, it's slow. It's extremely painful; it's releasing. God bless us all.
Thank you Weejun for the welcome! My husband was diagnosed 3 years ago at age 59 and that day as you all know forever changed our lives. I have moved past the denial stage and have more or less adopted the philosophy of taking it one day at a time. He can no longer drive (just happened 4 months ago) and that has been the biggest challenge so far. I didn't think we would make it through the first week. Will continue to pray for all of us. Angie
Welcome areed, So sorry you have to be here. My DH also was dx at 59. He is now 61. Has not driven in over a year and a half. It is hard some days. But having this place to come makes it so much easier for me.
Welcome areed. You have come to a supportative place.
My husband was diagnosed with FTD (frontotemporal dementia) at the age of 58 in 2008. I'll never forget the date when FTD was first mentioned, August 8, 2008. I was heartbroken and my husband didn't even react. He even asked the doctor why I was crying.
He hasn't driven in over 2 years and now speaks very little and when he does it doesn't really make much sense. But I feel lucky because he can still do all of his ADLs (activites of daily living) and is not incontinent. He attends day care also which helps me alot mentally.
I wish I could accept it but I just can't. I find that by evening time, I'm getting tired and my patience is wearing thin, then my voice starts to sound louder and impatient. My heart broke just a few days ago when hubby for the first time did not know who I was...he was speaking to me thinking I was our daughter saying,"your mother used to do that". He still does all of his ADLs (activites of daily living) and is not incontinent. drives but not alone as he gets lost. I know it's going to be a slow long journey...my fear is how long...years. Thank you for this forum.
Julia..you may not be able to accept it just yet. Just deal with it the best you can. Thank goodness he still does all of his ADLS. At some point he may have to stop driving and that will present problems. Right now don't even think of "years". Try to get enough rest as we know the more tired we are, the more difficult life becomes.
I believe I've accepted what our life has become, but I still just take it a day at a time. I can't look too far ahead, it scares me too much. But, we had a little "bump in the road" a few days ago. Something happened and he got paranoid about who did it. I tried to explain to him that HE could have done it, by accident. He couldn't accept that explanation and I had to tell him he has dementia and he might have forgotten that he did it. He became very angry at me, saying he doesn't have dementia and why would I say such a thing. I cried for the first time in many months, while explaining his problem to him. He went upstairs for awhile and then came back downstairs and was very calm. Since then, actually just yesterday, he has asked me if he has Alzheimer's. I explained as carefully I could what was going on with him. He told me he would not let fear of the disease get him down. I was flabbergasted (I don't know where that word came from!). He actually sat down and talked with me calmly about what's happening to him.
I have never told him he has dementia, unless the subject comes up, because I don't believe in upsetting him and if he doesn't want to know, that's fine with me. But, to think, that he asked me to tell him about his disease! It was a milestone, and I'm grateful we had the talk. Now, of course, will he remember it? Probably not.....
Bev, he might remember it, at times. Mine does most of the time, but then on a bad day, he will forget - and ask what's wrong with him. This is the mighty roller-coaster we are on! Glad you had the talk though.
Bev, my husband has asked me several times what I think is wrong with him. He is referring to his lose of concentration and other more obvious things. He asked me last week if I thought he has AZ. I told him NO that it wasn't AZ but some form of brain problem. I choose my words carefully because I didn't want him to feel like I was labeling him. This would have ended the conversation and made him mad. He still thinks that his problem is from his petulary tumor and using the cell phone. I really don't care what he think is causing the problems as long as he is aware that there are problems. It helps for him to be aware because sometimes He and I can use this as an excuse for him not being involved in some household item.
It's been 3 years since his diagnosis and we haven't really talked about it because he would get angry at the mere suggestion that there could be something wrong with his mind. But, when paranoia sets in and he begins to blame someone else for doing something he might have done, I felt it was the perfect time to let him know it wasn't someone else, it could have been him. Fortunately, he was only angry for a little while.
Vickie - I'm glad we had the talk too. And Mary, I always choose my words carefully, too, but there are times when I think he should be aware as well.
My dh knows he has AD and has known from the start, he didn't know then how it would affect him. He knows he can't remember anything and he knows he hallucinates and can be paranoid. The hard part is getting him to understand when it isn't real. If he is being paranoid about him working in the yard and I tell him he doesn't have to he'll say "We'll see" as if someone is going to come and make him work outside!
It's the same here Bev...my Dh never does anything..always blames someone else..there's just us two here, if I didn'e do it who did? So I just try to change the subject. It's like he's a little boy again...on the defensive all the time. It's the hiding things that is getting me down, he's scared someone is going to take his things. Sometimes he imagines that someone was here when it's just us two. Sad to see my Dh who could do anything come to this...if he couldn't fix it, it couldn't be fixed!
DH is now going through drawers and closets and throwing out what he says is junk. Junk is something he doesn't know the use for. He has thrown out the attachments for our shop vac. When he goes to sleep I will go out to garage and take them out and hide them somewhere until he has forgotten about them. I really have to be alert to what is in the recycle bin.
Like you, Julia, I get the blame for everything. People come into this house and take stuff, especially his. Yes, it is so very sad to see our spouses lose ground like this. When we look at them, we see the ones we married but that is only a shell. We live for a glimmer of the past. Instead we have to deal with another person who has no past.
Thank you for the welcome..as sad as it is, it's helps to read and learn aboout this terrible journey we must take. I put on the movie "Notebook" to watch together, hoping something might trigger off a conversation with Dh ...but, no, he didn't sit still longer enough to take any of it in. The movie was coming near the end, I was watching it alone...so I turned it off before I started to get too emotional. Another day to get through!