divvi, venting is good and this is a good, and safe, place to do it.
I also get a lot of the "talking down to". I'm the one who is crazy for wanting windows open when it is colder outside than inside. I'm nuts because [fill in the blank]. I still get a lot of it, but got a lot more before my husband's main EVENT which caused the high level dementia we are dealing with. But long before that, I was getting the sneers and the other talking down to stuff. I realize now that he already had some lower level dementia from an earlier cardiac operation and event.
All of this drives us nuts. It is all part of the mean spirited stuff, and violence stuff, that are the way they try to compensate for what is going on in their heads. I've become convinced that it is a continuum, with the mean spirited and nasty talk at one end and the screaming and physical violence at the other end.
And they ALL do it either at one end or the other.
My husband used to walk in front of me or beside me, but now he walks behind me all the time no matter how slow I walk. His vision is fine - I think in his case it's more about knowing where I am. He could "lose" me if he were in front and didn't know I paused to look at something. Now put him behind the wheel of a car and he'll zoom off with no concern for whether I'm following in the car behind him.
Starling - I'm hoping that the mean-spirited stuff WON'T progress to violence on the other end! I'm sure it's all individual but does anyone have estimates of how long the highly irritable unreasonable can't deal with anything grumpiness lasts on average?
JustThinking, what often happens with AD is that the patient develops a type of "tunnel vision" ... the eyes are working fine, but the patient has trouble seeing something to the side. So they walk behind you because they're more comfortable they can see you that way.
AD can affect vision in many ways. The overall symptom is called "visual agnosia".
AD can also cause problems with interpreting sounds even though the ears are functioning properly, which is called "auditory agnosia."
For good description of both types of agnosia see:
JustThinking, basically it will last until they can't talk anymore. It has to be you who is at fault, because there is nothing wrong with them.
So I don't know how to wash the coffee pot correctly because I let it air dry on a silicone pot holder instead of putting it on top of the stack of paper plates. I don't know how to clean the counters because I would prefer that we not use the dish towel for that. Etc., etc. I'm just reporting what has been going on around here for the last half hour, but you get my drift. Basically we don't know what we are doing because we do it differently from the way they do things, even if we have been doing it for 50 years and they only attempted to try it 10 minutes ago.
It is silly and unimportant, but it is also frustrating because it never stops and it will drive you nuts. But you can't complain about it to anyone but the folks here because it is silly and unimportant. But, since we are living with it too, we understand.
Trisinger said something that clicked with me when I mentioned awhile back how lynn would stay about 20 paces behind me. As others have mentioned, its because they have trouble seeing you. Tunnel vision. Trisinger suggested I hold his hand, I tried and it made all the difference! He walks just great if I am holding his hand. But alone, his steps are unsure. Poor bugger
And above all, don't bother trying to make sense of his behavior. You can't. And it will change from day to day. Just mention them here and we'll all pitch in and let you know what worked best until that phase passes. Some people look at me oddly when I rarely look behind to see if he is following me. He's been doing it for over a year now. Sometimes we hold hands, sometimes there is not room enough to walk side by side.
By the way, my husband, who basically says only the five words, sang "Happy Birthday" with me to our daughter this morning! He couldn't do it two weeks ago when our younger daughter had her birthday, but he did this morning, and it thrilled us! Plus, he doesn't know who we are, nor our names, nor his! Isn't that wild...and wonderful? It doesn't take much to make me happy any more!
My DH also walks about 20 paces behind me in the store and I often stop to see if he's still there. Lots of times when we're out on the street, we hold hands and he doesn't have a problem keeping up with me. Also, he will wander off in the store and do his own "shopping" and if he can't find me right away, he gets stressed. I try to stay pretty close. Then when he finds me, he accuses me of leaving him and getting lost. I wasn't lost. I know exactly where I was. I try to make a joke out of it and sometimes it works. Oh, well....
Today he remembered his birthday. Couldn't tell you what year this was or the month. Did know it was the 25th. He couldn't remember his SS number, his mother's maiden name. Pretty sad, really. He asked me what he had done for a living for over 38 1/2 years. Breaks my heart.
Boy, Mary, that is so true. My curling iron died, and I made a dumb comment about how i wish he could still fix it. "I used to fix things like that?" Yep..found it in the garbage can a bit later. But no fuss, no muss about it...THAT is a blessing.
We had a lovely call from old friends the other night..I emailed a thank you and told them our circumstances now (they had heard some of it). This morning a beautiful email arrived to both of us so full of love that I took a chance and showed it to him. He wasn't upset at all, but seemed extremely grateful to hear of their caring. A couple of weeks ago, he would have denied everything in it.
I have noticed the walking behind for quite a few years now. It just seems to get progresevely worse. If I stop and wait for him, he will get to within about 4 feet of me and stop. then he asked what I am waiting for, what I am looking at or something else. I think it is so funny that he won't walk beside me in a store but he can roof a two-story house.
Booger tossing and poop picking!!! What an elegant site you have here Joang. Bob dogged me so much I wanted to enter him in a Bloodhound competition. When his personal hygiene deteriorated, I started showering with him. I would clean him 1st, he would get out and dry himself while I showered. Then I would get him dressed and then myself. One day, he had hung on my every move to my breaking point. When I got into the bedroom to finish dressing, their he stood. I freaked out, screamed at him to get out. After 2-3 screams and he didn't move, I took him by the hand and moved him to the hall. Then I went back into bedroom and SLAMMED the door. I leisurely dressed and lay on the bed 5 minutes or so, completely exhausted. Guess what?? When i opened the door, there he stood. I laughed & laughed and we went hand in hand to other part of the house. and so on to the next episode>>>>>>>>>>>
I decided that I like the idea that my DH walks behind me. We were walking at the park while my son had football practice and I could almost feel as I was walking by myself (what a treat). Thank goodness I am a woman and am capable of enjoying "being by myself" as well as keeeping up with him while he is 4 feet behind me so I don't lose him!
Yes, walking behind and then getting distracted by whatever so that I have to keep looking back to see if he's still there. Exactly the same as so many have already said. The NEW phase now that DH isn't driving, is the subtle little vibes I'm picking up when I am going to drive somewhere without him. The only way I can describe is the way a pet reacts to the routine of putting on shoes to 'go' outside or etc. This whole scenerio is completely foreign to our way of life here... We live on a farm four miles from town.. we each worked and tended to our various errands,meetings, etc. Retirement after a life of teaching,ranching for others,and holding public office..is more like prison confinement to my husband..especially now that he doesn't have the freedom to drive where he pleases and continue his routine. I've tried to get him to set up a kind of schedule so that I can take him where he wants to go. He refuses.. and prefers to sit quietly and if he thinks I'm getting ready to leave in the car, he suggests that we go do something he's got in mind at the moment. Sometimes that works out just fine, not always though because it conflicts with what I'm needing to get done. If I explain that another time is better, or if I tell him I can't do that right then, he's angry. Although I understand his frustration, now I'm beginning to feel like I have to SNEAK away to do my errands rather than deal with his efforts to come along.. If I leave when he's out of the house, its not long before he's calling, angry for not being told that I was going somewhere. I leave him a note, but confess that it is deliberate.. because I just don't have the patience or forebearance to take him with me. Anyway, I think the childlike behavior is that the same tension exists that was there when our children were little and they somehow 'knew' that parents were up to something..travel or going somewhere without them. It didn't feel good to leave my children behind crying at the door.. Doesn't feel better now. But a mere trip to the post office and local supermarket and to work a bit at my studio is becoming an effort in personal survival.. If that makes any sense at all.
Yesterday, we went to the car dealership to purchase a new car. My husband was real impressed when they gave us each a pen (he doesn't write any more) but he thought it was really nice pen. He put it in his pocket, then later when we were with the Business Manager, pulled it out like he had a gun. He thought that was really funny. Thankfully, I had called ahead to explain his condition. Everyone was really nice. Just makes me shake my head sometimes.
Judy it makes total sense. You have things to do, some of which you want to do without him for a whole bunch of reasons. You also need to have some life of your own (your studio) and you are entitled to have that.
One of the big problems with caregiving with this disease is that we all go into emergency mode, like we would with other sicknesses, but we aren't there for 3 to 6 months and then it is over either because the patient got well again or because they died. Instead it goes on for years and years and years, and the stress and anxiety just keeps building and building. And you can't survive unless you try to build up some kind of life for yourself that doesn't involve taking care of the LO.
Like you, it is still early days in my house, but my husband, like yours can no longer drive. He "reads" his newspapers. He watches TV. He goes out for very long walks every day, and yes, can still come back on his own. But who knows how long that will last so that also builds up the stress and anxiety until he does come home again.
But if we don't build up some kind of independent life of our own, we won't survive this. On another support group (not the one at the Alzheimer's Association) I've heard caregivers just plain fall apart when the caregiving ends. It was their entire life. It was all they did, and when it was over there literally was no life left. I'm not doing that.
I am finding myself feeling guilty and my DH is still very early. He drives, and does not usually get lost unless we are in a different city. I do feel like I am spending my life taking care of him and already find it difficult to do the things I love to do. The other thing I resent is his apparent need to be with me constantly. He tries to follow me into the bathroom for crying out loud! My children think it would be great for me to retire and spend more time with Dad but to be honest, my work is my salvation. When I am at work, I don't have time to spend worrying about him..My office manager is good about keeping him from following me into exam rooms. Yes he does spend time at work with me but not as much as he used to. I love him more than life but sometimes I want to scream "just leave me alone"! My children still refuse to think he has AD so they do not understand my need to get away at times. If I don't have an outside life, I know I will fall apart at the end. I think we all must prepare for a life without our DH. It is the only way some of us will survive.
Sandy-if you as a medical professional cannot get your children to accept their father's illness how do the rest of us manage it. It's a shame that you can't show them an x-ray showing a broken mind. As Joan so often says-outsiders think we are drama queens. Another stress we can do with out.
My children won't understand until they are ready, it has taken me so long to realize this, I still am frustrated but at least I am no longer the only drama queen and exaggerator who is making up stories for some unknown reason. I am honored to be in this group of individuals..UNITED WE STAND! By the way, I just e-mail my DH's neurologist and told him he needed to print a sheet of website to give new patients with AD diagnosis. This website needs to be on it. It would have saved me sooo many tears and that utter sense of helplessness and loneliness. Thanks to PatB I learned about it and she truly saved my life when she sent me the site..
boy isnt that the truth, SandyD you being a physician yourself and your own kids dont trust your diagnosis of AD. exactly how are us regular joes going to accomplish that? there should be seminars on a mandatory basis for all neurologists to attend on a yrly basis! and joan should be guestspeaker at all of them:)(more to add to your plate miss joan!)they just dont seem to have a clue other than its a devastating mindrobbing disease and its fatal. the inbetween yrs are left to the caregiver to work out. i might add seminars for family members mite be a good thing as well! divvi
Andrea has been noncommunicative for about 4 months now...speech limited to nonsensical words and occasional phrases. She has been losing weight, so the NH is always attentive to the amount she eats at meals.
She had been having a bad few days this week...not talking or getting out of bed. Just staring. This morning, she was at breakfast, and had eaten some. She had been sitting there for a while, with just a little food left on her plate. The aide came by, and asked, "Andrea, do you want to finish your breakfast, or do you want me to take your plate?"
Apparently Andrea looked up and said, "Can't you see there is still food on the plate, you stupid idiot?"
I was in the bathroom combing my hair. In walks DH, big smile, puts one arm around me and puts his head on my shoulder. I could see him smiling sort of a contented smile with his eyes closed in the mirror. Then he aske me if I still like him. Of course I do, I responded. How could anyone not like an affectionate guy like you. Then I get a hug and he leaves. This is really sweet but oh, so childlike. I'm happy that he's the way he is (for now) but I sure hate to see him this way. Does that make any sense to any body else?
My DH is also very sweet and usually has a smile on his face. Music keeps him in a good mood and he often sings to himself in uncomfortable situations. I'm happy he's not angry or mean but I hate to see him this way too.