I have made it no secret that my husband has EOAD; but a lot of times I am at a loss when people ask how he is doing. How he is doing is progressively worse; but how do you succinctly get that across when people ask? I don't want to say "fine" because he is not fine. "As well as to be expected" doesn't really cut it either. But to really explain would take forever and I'm sure the "askee" doesn't really want to know that much detail. Does anyone have an easy answer to this question? Shannon
When people ask me how he is (unless they are really strangers just asking for the sake of politeness) I usually shake my head and tell them he is on a slow but steady decline. If they ask how I am, I say "fine": because I am OK.
I say "the disease is progressing, but he is happy most of the time and still has a good quality of life". When they ask how I am, I say I'm doing the best I can. Some people do want the details, some don't--you can usually judge if you know them pretty well. I did misjudge one person, though, and was told by her that I talk about the details too much. Needless to say, I got the message and now say very little to her about what's going on.
I've been thinking about this lately. I think I talk too much about AD (DUH!), and no one really wants details. From now on, I'll take Marilyn's advice and say something like - "Slow decline." And if they ask about me, I'll say - "I'm doing okay", because now I am, and even if I wasn't, no one wants the details.
You usually know if someone is asking just to be polite or if they are truley concerned. If it's a polite question I reply that he is not unhappy. If it is a concerned question I saw that his decline is rapid but he's not unhappy. The question I'm almost always asked is does he know you? I answer yes and that is a very good thing but sadly he dosen't know anything else. Most people stop at that because anything more makes them uncomfortable.cs
People often ask how I am handling all of my caregiving (4 people). I say, "I don't know, I just keep putting one foot in front of the other and try to Breathe."
When anyone asked me if Foster 'knew" people around him, I'd always respond the same way. "Foster knows he is loved!" I recall the many times reporters asked Nancy Reagan about how President Reagan was doing.... Always..without exception...she's press her lips together in a small smile, lower her eyes and shake her head 'no'. She'd never go into detail... it was just too difficult/personal to answer. I think her wordless answer said it all.
Great topic. I'm always at a loss. Marilyn, your response works perfectly for our situation. I'm going to try that next time. I frequently feel when people ask me how DH is that they are hoping I'll say he's doing better.
My answer was usually "As well as can be expected." or "We've getting by". The advice that bothered me more than that question was, "Take care of yourself." My reply to that one was "I have no choice now, I have to take care of myself because no one else has stepped forth to take care of me."
Terry--What's interesting is the reaction I see when I answer that way. It is palpable relief! People must dread asking the question, because they anticipate doom and gloom. There is a saying Steve used to use frequently, I can't remember it exactly, but something like like "Why complain, it won't change anything." I think it's especially true in our situation, there is only one friend who offers to help on his own and on a regular basis; others will if I ask them, but only the one who takes the initiative--and there hasn't even been anyone with dementia in his family, that I know of. He's a special guy.
I usually say he's having a good day or he's having a bad day. Most don't want any more details than that. DH's son stopped by last week on a particularly bad day. He said to DH, "Are you OK, Dad?" DH said, "Yes, I'm fine." I was standing behind DH and his son looked beyond him to me and I just shook my head that no, he wasn't fine. It must have made an impression on his son (for the first time), because that evening, his wife called (she is an LPN) and said his son had told her "Dad is not doing well at all."
My stock answer is "we're getting by a day at a time" - unless they want more information. Some friends even ask DH how he is doing. HIS stock answer is, "mean as a snake - just ask my wife". LOL
I say as well as can be expected. I answer about myself depending on how I actually am feeling.
It is not true that everyone who asks doesn't want a real answer. I've got neighbors who ask regularly, BECAUSE they have been through it themselves with parents, aunts, uncles, etc. They want the real answer. And they especially need to know if I need something. The last time the neighbors across the street actually asked instead of figuring it out for themselves was because they wanted to tell me that in an emergency they would take him in.
I think we need to be aware that some people want to know, and some just want to know that the last stages haven't arrived yet, and answer accordingly. To pretend that everything is hunky dory when hospice has gone on 24 hour watch isn't polite to those who are asking.
When I am asked how my dw is doing, I ALWAYS have a great answer for them..... Sometimes I tell them that she is doing so well that they want to use her picture on the Alzheimer's poster. Other times, I will say that ever since I started giving her the "Smarties" candy pills, she has made tremendous strides in reversing the disease. Occasionally, I tell them that the doctors made the wrong diagnosis..she actually has medula diffusion virus. I keep searching for the right answer....Gosh I hate stupid people...what part of progressive disease is so difficult to understand?? I actually told someone that she was getting starfish cells implanted in her brain to regenerate the brain cells and make her better, sort of cutting off one arm in order to grow another, and actually regenerating a new brain....My only mistake was mentioning that she can now hold her breath under water for 4 hours.... Oh the fine line between genius and stupidity...........genius has its limits!!!!!!
phranque, you are just tooo cute...... I love your answers because they usually bring a smile to my face. That is why I come to this site. Other peoples responses help alot.
My dh told me the other day I need to go to a therapist. I told him I go every day. He said when, I don't miss you. I tell him it is when I go to this site. I get better advise and feel better with this than any therapist could give me. On bad days I can't imagine going to a therapist and having to pay him/her to tell me to just deal with it or be more accepting or whatever. I doubt they would use the money I paid them to give me such worthless advise to get me out of jail after I slugged them......Nah, I doubt it. Guess I will keep coming here for REAL HELP.....
Phranque, you are wonderful! I love your responses! <grin>
Mine are: "I'm hanging in there" or "Taking one day at a time" or "fine" and if they ask how my husband is doing: "not well" or "about the same" - never "Okay"
Phranque: I wish I could come up with answers like you can. I enjoy reading your posts. I think a lot of people ask me just to be nice. It is the proper thing to do. They kinda care, but, they also kinda already know.
Right now, my standard answer is 'Not Good' . That is the truth and they can take it any way that they want to.
Phranque makes us smile and that is a good thing. Most of the time his comments are made with a tongue in cheek but he can get very serious with his post. Trust me, you are going to love him.
I see that you are a guy. We love having the guy's point of view. And yes, Phranque has a wonderful sense of humor we have all come to enjoy and depend on.
Welcome to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - .www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". I also see that you are dealing with EOAD. There are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide.
Also, just for the guys, there is a caregiving section for male caregivers on the left side of the homepage.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a new "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Whoops - forgot to mention that if you go to the top of this page and type in EOAD in the search section (make sure the topic circle is filled in), and hit enter, there will be at least a dozen EOAD topics that come up.
Phranque is my hero. His twisted, contorted, wierd sense of humor was the only thing that made sense to me for a year. We often refer to "alzheimer humor" ...it's the kind that NO ONE in the world would understand, but all of us do. So many things are such that we could never share them with anyone but friends on this site..because we understand..and have often experienced the same thing. From my experiences of finding a small hearing aid in my husband's nostril, to him peeing on his new shoes and tossing them in the trash...plus countless other rediculous moments... they were events that were not funny at the time, but more so later on..and they made our lives into the complex situations they were/are. Phranque has more on his plate (cares for THREE PEOPLE) than most of us do, -- and he still stands ready to lift all of us up in our moments of dispair. I love that crazy guy! Three cheers for him! Hip Hip Horray! and a hug around his neck.
I don't have a good answer to the question for my husband. But when things are tough and someone (particularly at work) asks me how I am, my answer is: "I'm here."
I just developed a new answer to an inquiry about my dw.... How is Audrey doing? Absolutely outstanding,....she is progressing even faster than the neurologists imagine...She is setting records in the speed progressison of the disease..
...........or Phranque could ask, "WHO?........who is Audrey?"........... I've always thought that AD had to be contagious..and I had caught it years back.
One day one of my dh's brothers that never calls or comes over unless he needs something asked how his brother was doing. To say the least that is not the question I needed to answer that day to someone that really does not care, I said "he is dying from this disease". Guess that was kinda harsh but at the moment I did not care. I knew he did not really want to know. He only ask because he thought it was expected. You can usually tell when someone really wants to know or if they are simply making small talk because they ran across you and thought they should ask.
Thunder: Glad to hear that you are a guy. Sometimes, I think that I am the only guy on this website and I know that I get on the ladies nerves. I have even been known to interrupt them.
But, when my DW does something that I don't know how to handle ( like throwing away all of her panties) guess who has the best advice in the world. These wonderful ladies. And, you can't get that kind of advice from your NeuroDr.
I am so old that I can say 'I love them all' and get away with it.
Wishing you Well and looking forward to reading your posts.
Thunder: Welcome to the site. And good for you for speaking your mind. I hope you continue to put your feelings out there so honestly and forthrightly. We can use all that we can get and especially from a man's perspective. Hope to learn about your story soon.
As for Phrangue. I read this very post of his to an old friend this morning. I told her it's humor that keeps us from going totally bonkers. And Phranque is the master at it. He's lifted me up so many times I can't count. As long as I can still laugh at his posts I know there's hope for me. THANK YOU Phranque!!!!
Dean, you aren't the only man on this group. I agree with you about the help we get from the ladies. I particularly remember the time I struggled to get my wife's panty hose on. Boy, did I get a response to that one, with graphic suggestions as to what should be done to the person (?man) who invented panty hose.
I, also, find myself quoting Phranque to various friends. Keep it up, Phranque.
Dean.. you are definitely not the only man on this site, and these ladies are absolute sweethearts. They can be extremely graphic on how to handle ANY feminine problems, and they have been my source of inspiration to continue my role as caregiver. Without them, I would be so so lost, and I would still be burning Cool-Aid when I tried to make it. This morning, my mom complained of some bumps on her private area, and she said that she has had them for 3-4 months. Now, I draw the line right there/ She will die before I even attempt to examine her. Fortunately, a nurse came and took this burden away from me. I delegated that aspect to her, and she is cured as far as I am concerned.. But thank God for the ladies!! They are indeed great blessings and wonderful companions in more ways than can be imagined!
If I have a terrible day, all I have to do is get on this website and hope there is something somewhere from Phranque, who makes me laugh out loud! Not too many people can do that, but he does. Thanks, Phranque!
joyce, there was NO NEED for panty hose for Marsh....we talked him into continuing to wear trousers....<grin>
Truly, that wonderful man was trying to help his wife dress the way she always had and he was having problems helping her get them on. We told him she shouldn't be wearing them any more (in very explicit terms) and he heeded our advice. <grin>
had me worried there for awhile mary, I was afraid that the stress had really gotten to Marsh. Anyone who would wear panty hose if they didn't have to , give me slacks any day. I can't remember the last time I did wear them.
I don't blame you for wanting to dress your wife lile she always had, Marsh. I tried to always dress my husband like he would have wanted. It was part of my therapy to make sure he was. Luckily I didn't have to worry about those panty hose. Now you men know what we women have to go through to please our man.
Marsh- when you had trouble getting the panty hose on, were you planning on robbing the 7-11 store?? I agree that they are a bit hard to get over your head, and I found that a good ski mask works much better.
Phranque..you smartie..you owe me a new moniter and keyboard! My sides hurt from laughing... You gave me a great idea for a response. When I am asked how the DH is doing, I have given the stock answer..as well as can be expected or one day at a time or I'll just let em have it right between the running lights with a curt answer..just depends.. But...I am going to add that since the doctors have suggested we try a new treatment of Milk Duds and Red Hots he is doing so much better..( he watches lots of movies so I'll have to add other goodies later). I'm going to tell the especially stupid people he is entering a skateboarding race on Memorial Day and is practicing now!
Since we live only ten minutes from the NH, when people around here ask how Jean is, I'm starting to tell them "Why don't you go and visit him?" It's really sad when I see so many people there that never have visitors.