I hear this question almost daily. We live in a rural area and everyone knows H has dementia and they always ask me how he is. I have done the same to other people with terminal or short term illnesses. It is sort of like when you go to the funeral home and not knowing what to say.
So, How do you handle the question - "How is (Paul) today?
I hear you. I hated this question. I would answer automatically, "She's fine" but then I wanted to scream "if you consider FINE peeing on the floor and not knowing who I am and that she's probably going to die before she's 65 and not knowing her grandchildren or having any purpose in life whatsoever and being reduced to the status of a low functioning 2 year old FINE."
I think all of that showed on my face anyway. People backed away pretty quick.
So I started saying, "She's fine, thank you, as fine as she can be in her condition. She has her ups and downs, and we take it one day at a time."
That seemed to express the difficulties without getting gory or glossing over it.
trisinger - my Father had a heart condition from when I was a few years old and some of my earliest memories are of people asking me "How is your Dad? I used to get so tired of that question.
I agree with trisinger. Last night a neighbor asked how M was doing. My reply was "as good as can be expected under the circumstances". This led her to further discussion of the problems and how I am dealing with them. It was really helpful for me.
I hear that a lot. Counts who is asking like today i took our 2 yr old to our family dr and he asked her how is your daddy, i didn't say anthing, he asked her, but his nurse asked me and I told her about the problems we are having. For the most part I just say he is fine and leave it.
I also answer, "As well as can be expected." What I'm telling them is that there has been no major change.
The answers I've gotten have included offers for help including an offer to stay with my husband when he no longer can be left alone so I can get things done.
I really think that is the best answer. He isn't "fine" he is very ill, but he also is not currently falling apart and neither am I.
Michelle33..I'm in tears just thinking about your dealing with this ugly disease and such small children. I don't think anything I have gone thru can begin to compare. I hope this group can at least give solace and really good advice. i wish there were more help to offer.
I tell them what Lynn would have had he been able. His favorite expression as he got older when people ask how he was "I'm on the right side of the sod"
Have any of you heard the definition of FINE? For those who don't like cuss words, I will use the more "ladylike" term, but you will all know what I mean.
F = fudged up I = insecure N = neurotic E = emotional
Ever since i heard this definition, I can't help but think that it's applicable to most situations where people say they are fine. So many people say they are fine when they are anything but fine. I think everyone subconsciously understands that fine is "i'm not dying right now" and "I don't want to discuss it."
I also typically say "he's doing as well as can be expected" and then see where the person wants to go from there. Sometimes it was just an automatic greeting and the conversation moves to another topic, sometimes the person is genuinely interested and will pursue talking about my husband (or someone else they know who has or had AD.)
To say "fine" seems to make it difficult for people who genuinely care from asking me any more about him. They take it as a signal that I want the conversation changed.
...Every time someone asks me how I am and I say "fine", it reminds me of when I got a horrific case of the flu. My temperature shot from 99 to 105.5˚ in three hours, and I was rushed to the hospital. They had a wheelchair waiting at the curb. (My father was a doctor -- he called the hospital to get a room ready and then drove me there.) They bundled me in and my father started pushing me through the corridors. A nurse walking by asked me "how are you?" and I automatically said "fine." I mean, I wasn't feeling particularly conversational, you know? She started waving her finger at me and said "If you're fine, then what are you doing here?"
I gotta tellya, with a fever like that and a sore throat that made strep throat seem like a picnic, I was NOT amused...
I don't mind being asked how Bill is doing. I thank people for asking and remembering he is still a person. By now most folks know he is in a dementia facility.
People who know me really well don't ask how my husband is doing. They have heard "as well as can be expected" for two years now. Instead, they ask me "How are you doing?" - my reply is "Okay" - NEVER fine. <grin> "Some ask me how are you holding up?" to which I reply "by leaning on walls" - or my favorite: "You look like you've been put through the wringer today. Your husband must have had a bad night." to which I reply "There have definitely been better nights!" Those I work with more closely know that if I want to rant, they will gladly listen and let me get it off my chest - and about once a week, I take advantage of that opportunity. <grin> It really helps. Of course, you guys help me the most! I appreciate their questions because it shows me that they do care about my husband and me.
It depends on who is asking how I answer the question. If it is someone who really wants to know how my husband is doing, I will answer in terms that they can understand "he is at about the level of a 9 month old now". If someone asks how I am doing, I usually will answer "fine just taking one day at a time."
The answer of "fine" really pissed my mother off. My sister's husband died of cancer earlier this year and with mine having AD, my sister and I were always telling my mom that they were doing fine and we were fine. My aunt also had AD and was dying so my cousin was always saying "fine" too. Unfortunately, my mom wanted more details and was very unsatisfied with that answer. Saying "I am fine" has become sort of a family joke at this point as it realy doesn't answer the question.
It's so rare to connect with someone who knows the challenges of raising little ones in the midst of all this.
I hope you'll post often. Do you have the one child or others too? I have 3 boys, 10, 8 and almost 3. I cried tonight when our 8 year old said he wished he had his friend's dad for his dad. I can't stop feeling that I failed them, I failed to give them a happy, carefree life that all children need and deserve. I know I can't "fix" things for them, but it's so hard to see them struggle. I really don't feel equipped to do this alone.
What stage is your LO in? My DH is well into stage 6 I think; He needs help dressing and showering and is bowel incontinent. He attends a day program and has a care worker in the afternoon. (I work full time) I can't really have a conversation with him anymore. He doesn't usually understand me, I think, and when he talks, it's barely coherent. I don't know how much longer I can take care of him. He is declining so rapidly. He's 54, diagnosed 2 years ago, showed symptoms for at least a couple of years before that. I see so little of the man he was when I met him, and it's hard to see him slip away every day.
Sorry to ramble on. I just wanted to introduce myself and say that I can relate. This site is great; I get so much from reading all the posts. But even as the challenges of having a spouse with AD are unique, as Joan says, I think the challenges of raising young kids in the midst of this are perhaps something only someone who has experienced it can truly understand.
Your post broke my heart. You DID NOT FAIL your kids. It's not your fault that Alzhiemer's Disease entered your lives. I would suggest therapy for the kids, but it would have to be someone who really understood EOAD and how it affects kids. I don't know if there are any children's therapists who have that speciality. Does anyone out there know? With the prevalence of EOAD cases, this is a resource that is badly needed.
All I can say is that on my third birthday, during my party, my mother got a call saying that she had TB and had six months to live. She essentially said: oh, no, I won't! and lived until I was 19. Fought like a tiger to stay alive. During that time, although she was alert and loving and a good mother to the degree she could be anything active, she had terrible episodes - hemorrhaging blood (at home), having various operations (including one which removed ribs so they could remove part of her lung, then two weeks later having MORE ribs and MORE lung removed), almost suffocating when travelling up over Tioga Pass in Yosemite - she insisted we travel whenever she could but she had her lung "collapsed" with oxygen which expanded in the high altitude. I couldn't have friends over for most of my childhood. There were only limited periods when she was strong enough to drive or go places with me. I was an only child; my grandmother took care of my mother AND me and was a very controlling woman.
I'm sure many of us have had horrible childhoods. AND YET FOR THE MOST PART WE'RE OKAY! Kids are resilient. For every kid who's damaged by a problem parent I'm sure there are many who were NOT damaged, indeed became more compassionate and loving and empathetic people as adults.
Kids even more than adults can understand that not everyone's perfect. They aren't! I remember wanting to be around my friends' normal mothers so much, and I felt like I betrayed my mother when I went places with them! So the kids WILL have regrets about the way they feel about their father, and you should of course help them to understand that HE CAN'T HELP IT any more than they can help wetting the bed, or bopping one another from time to time. But, as they say, life isn't fair always.
Your kids would be just as upset if their dad had lost his legs in Iraq, or was a drunkard, or was never home because he was "at the office." If you can, try to find things they can do to take care of him, play with him. Things he didn't used to like to do with them you may find that he now will enjoy! Can he toss a ball with them? Play a simple game like Connect Four or Parcheesi? Can he walk around the block with them and the caregiver? Listen to the 8-year-old read?
No, he's not perfect and it is in no way your fault that he is not. But if you can give them some good memories of him to hang onto before you have to move him to a facility, do it! And then don't feel guilty about what else you can't do.
People ask me each day, how my husband is doing- it is just a generalized question to be nice, I think. Some do not call anymore, and when I call them, it is the usual, how's Michael? I want to answer each person with the truth sometimes- Alzheimers affects each and every aspect of your lives. Alzheimers is just not a memory problem- it is an everything problem. Tears, sadness, aloneness, grief, are always in my heart and my eyes always have tears right behind them. I had one person say, "If your husband won the lottery, I bet his memory would come back." How horrible. Arranging for my husband to go to Day Care today absolutely was like a death. Putting him on the Disabled Bus on Monday will feel like he has died. When people ask how he is, I want to say, "Dying everyday- and I am grieving everyday." I really do appreciate the people who really want to know how he is- but there are some who don't have a clue- those are the ones who think Alzheimers is just a memory problem- I want to tell them to imagine your once capable spouse- now diminished to a grown 2 year old, having to attend an Adult Day Care.
I still catch myself artificially stating, "he (mine is also a "Paul") is fine." or "Hanging in there."
I am trying though to retrain myself to state the truth, even if I have to make it the SOFT version. "Things are increasingly difficult as the AD progresses." "He's 6 ft, 200 pounds of pure Toddler." "He's losing more cognitive ability, but thank God has never wandered beyond our neighbors place."
And other times I feel a bit more serious, and when I really want some sympathetic dialogue with another adult I will inject the kids. "Our kids (now both teens) have a difficult time keeping patience with their Dad." "DH sometimes upset the kids when they do have friends over to the house. He goes to their room and asks where their mother is (me). He tells our kids its time to pack to go home (to our home years ago, two states away).'"
I get most sullen when people talk to me about their travels with their kids, or any other activities, and ask "So what have you all been up to? Are you going anywhere special for...(holiday, summer, etc.)?" I'll tell 'em, "no, and the kids haven't been happy about it. We seldom go places because it's been impossible to take DH to certain places, or to participate in things the kids would like to do."
I relate to the other Mom's who sometimes feel WE have failed our kids by not "finding ways" for them to have as normal a childhood as the next door neighbors have. True, it is NOT our fault, but it hurts none the less.
My children see a psychologist a couple times a month for the past 5-6 years.
I hate this question and it doesnt matter from who its coming. anyone who knows us and has the need to still ask 'how's ** doing?, is in hard denial. since we never really open up and say how our day is, and how bad it can be, i guess that kind of sugarcoats the reality to them. if they really knew how are days are spent-ie--just for a starter,-never getting more than a few hrs sleep at nite, on our hands/knees everyday cleaning up incontinence issues/crying ourselves silly worrying about financial/our own health issues//watching our spouses die a little more every day in front of our eyes..and not to mention those who have children at home to witness it all and have to feel guilty for them on top of it all??? me, i just want to smack em and say -"never ask me that question again, my husband is dying and a part of me with him. " on the other side of the coin, is a dear friend of ours who has been a lifelong DH friend, and his mother died of AD, he calls and says" not a day goes by that he doesnt say how lucky ** is to have me." he never asks the dread question, just says let me say hi to my friend.. my SIL is the same way, but they are the only 2 close persons who really know the score. divvi
OK, so we all know we need help, right? How about when someone asks how "Paul" is, if we say "oh, you know, this symptom or that is getting worse, and I'm having trouble coping. I don't suppose you could help me by ..."
And keep a list of simple chores handy that others could do for you.
This would either (a) break them of the habit of asking that question in a big fat hurry or (b) get you some much needed help.
People tend to avoid seeing us, calling us, whatever........... after THEY OFFERED to help with something. They thought in a split second it was the "nice" thing to say or offer to do. After they give it a little thought, well...............................
I am the first one to know this is a very nasty thing to say, but sometimes i just say to myself about this whole topic when the question comes up,, i whish YOU were dealing with what i am and then we'd just see how things are then...divvi the tables would turn in a hurry.
I think that people think they would be inconsiderate not to ask. It's a normal response to things that are not well. I would not be angry with anyone who asked "how is he/she?" What else are they to do? They don't know what's really going on, so I think it is only normal they would ask. My friends ask "how is he?" I just say it seems to be stable at this time. I know they care about me, and would think it insensitive not to ask.
I agree Kitty. That is usually what I say also. I wish I knew something else to say to other people I know who have someone quite ill. You want to say something and not ignore them but most of them are not close enough to me to expect me to help with care.
My husband is in the last stages of AZ and the medical people at the care home don't expect him to last the winter. When people ask me how he is doing, I tell them "he's really bad." They asked, so I tell them. If they act like they want to know more, I tell them - he can hardly walk (needs two CNA's to walk to the dining room and they put him in a wheelchair to get back), he can't do anything for himself, he can't talk (he's also had a stroke two years ago), is eating pureed food because his swallowing is getting bad. And does he know me? Hardly. Hasn't for most of this past year. So my opinion is, if they are rude enough to press on how bad he is, I'll tell them!
I always try to camoflage the real truth i guess. maybe i want to believe what i am saying:) when someone asks how DH is i usually say hes holding his own or pretty good for the stage hes in..i wouldnt ever tell them, i clean up after him due to incontinence or that he has brain spasms that scare him/me silly-that he's hollowed eyed and has aged 10yrs and everyone now asks about my 'father'..i say what i want to hear i guess hoping i can escape the truth. on the other hand, my dear brother, tries to call and stay in touch regularly from Az. he always asks what i am doing for 'fun'..i had my fill of that question just yesterday and just told him my days arent fun anymore and i would consider fun just getting out to a nice restaurant for a nice steak and a glass of wine. he fell quiet. i know he means well but i can see so many folks have no clue what the caregiving entails or how draining it can be. anyway, i bet he doesnt ask anymore even though his intentions are good. you know how it is, certain times you lose your patience with the normal folks..Divvi
Only recently have I begun to be candid with anyone who asks. I just think they ought to know the truth. I don't want blanket sympathy from people. And I actually have to believe that they feel better knowing that their sincere (when it is) sympathy really does mean something.
When people at work ask how I am and it is a difficult day, I say: "I'm here." When people ask seriously how my husband is I sometimes say: "He's making the best of is situation but I'm having a tough time with it." I'll admit I wish they would ask me about me instead of about him--at this stage (he's pretty functional) it is emotionally harder on me. Pam
I just think people don't know what to think of say unless they have been there!! I usually say "We're hanging in there" or "a good day today" or a "not good today". That's usually as far as it goes anyway. I know what you mean about all the things you WANT to say about this and that!! I don't think that they want a real extended answer.
Yesterday the caseworker for my husband's long term disability claim called to get further information about him. After answering her questions for about 30 minutes she asked me how I was doing and if I had support. Nobody ever asks how I'm doing and I almost lost it on the phone (crying). I thanked her for asking but I couldn't believe my reaction to such a simple question.
deb, I know exactly what you mean. When I got a call from the agency on Aging and she asked me if I still wanted help so that i could get some respite. I lost it too. I always tell everyone that asks that we are holding our own. Unless they have dealt with Alzheimer's they have no clue and I think they would not believe me if I would tell them the truth.
Unless the asker has walked a mile in the AZ/Dementia care giver's moccasins they have absolutely NO idea just how sharp the stones are along our pathway.
There is this woman at church--sort of the steriotypical churchlady gossip. She drives me nuts. I try to avoid her but the other day she caught me--took both my hands in hers and with that ever so sensitive (phoney) tone to her voice, she asked "How are you doing, dear?"
Well, I've about had it with her because you never hear anything out of her except nasty or unkind gossip about others. So, with my sweetest voice I replied "Fine! Why do you ask?) That shut her up. Now she'll have something to talk about.
I find most people very kind. I try to discourage that question. If they ask how I am, I say "Better than I deserve." with a big silly grin.
I have 2 women friends that call up and ask if they can take me shopping. Do I need to go to the pharmacy. One lady calls and tells me her husband wants to play cards with my DH. What a jewel. I value these two and consider them true friends. They both know what AD is and what it does. They've been so supportive. One took care of her mother with AD for 15 years. The other one's FIL had lewy body dementia and she cared for him in the home. I don't know for how long.So, they do know. I value them so much
I think I may be getting a bit short tempered but, other than that one woman, ....ugh...don't get me started. :)
PS--I do have to clarify my last post. Just because one person is lacking in Christian chrity, doesn't mean the entire Christian church is lacking in charity. She is an anomoly. That's all and she needs to be pitied more than blamed. I'm just not the person to be showing pity right at this time. Maybe in another week or so. Thanks for listening and please don't judge the church because of what I said. Thanks!
Mawzy, if most of the folks in your church weren't basically good people you wouldn't be going there on a regular basis. So we know. We also all know people like the woman you spoke about. Unfortunately they are everywhere. Fortunately they aren't the majority of the folks out there.