I'd love to hear from others how they have dealt with denial, because I need more strategies.

I've been playing along with Hu's denial for months and months, with rare flashes of insight and recognition. It is stressful for me, keeping secrets, hiding, strategizing. But it has felt like the wisest thing, to let him have this defense.

But lately I've been sensing he might find security in seeing that I am facing reality in caring for him, so I have experimented with sideways back-door hints about my perspective about his needs, without confronting him in a front-door manner. Using humor, paradoxical things, even getting him to imagine what if he did have Alzheimer's, or what if I got it, etc.

So far I can see he feels loved now as much by my comments as by my letting him deny. Here are some exchanges we've had:

Me: "How come you laugh at me when I forget something, but I'm sad when you forget something?"

Hu: Laughter. "I am amazed at how much I remember. I'm disgusted with older people who remark on senior moments. I test myself all day long on my short-term memory."

Me: "I may be getting Alzheimer's too." (He objects to the "too" and laughs and says I don't have it.) "Let's keep track of how many times you forget things and how many times I forget and help each other."

Later...Me: "Let's just imagine you did have Alzheimer's. How would you live differently?"

Hu: "No differently, but I would have a deep pain anticipating imminent decline." Then he was quiet and I changed the subject.

Later: Hu: "Did you tell my brother that I worry too much?"

Me: "Yes. I told him to reassure you and not tell you things that would cause you to worry."

Hu: "You really are serious about taking good care of me!" laughing.

Me: "Your brother is planning to move here partly to be with you in case your days are short."

Hu: "No, do you think so?" (Very surprised)

So I'm watching for ways to drop "hints of reality" because I think it will reassure him I'm realistic, but I'm not going to force him to see anything.

-Mary

Hello Mary
I haven't posted in a while but have missed seeing posts from you. In 2003, I think,it helped me to read about the various ways you were helping Hu. If I remember, he was on the school board? My husband was diagnosed finally this past August. I say, finally, because I recently cleared out some files and found correspondence dated back to 2001 to my husband's doctor about things I was noticing that weren't 'normal'.
Anyway, even with a diagnosis, he is still in denial. He refuses to accept it and that is good for him probably. He's doing well and he's taking aricept. Like Hu, my husband is happy and feels competent unless I'm trying to reason with him in almost any way.

When he has problems, it is because of someone else or something else. If he misplaces something, someone must have moved it or stolen it. If he can't fix it, the tools are wrong.
He is furious that we confronted him and refused to support his running for re-election.
His point of view is that I told him not to run. Not the truth, that he has alzheimers or it that wouldn't be healthy for him, just that I told him not to run. This is the reality that stuck and he's angry about it.

Amazingly,although I'm not convinced, his secretary says he is doing just fine at work.

He is defiant and not cooperative about not driving at night. Even though he complains about the lights blinding him when I'm at the wheel and we meet oncoming cars, he cannot comprehend that he has any disability that makes it unsafe for others or himself. This is NOT my husband, who always seemed to think two or three steps ahead of all of us.

I try to keep our children informed but wonder just how much information they need. They are very supportive.

I want them to be informed and certainly need their help and they are willing to do what they can, but its like 'the elephant is still in the living room' and we can't openly face it or fight it.

You are so right about the 2 realities. That is exactly our situation. In fact, its probably everyone's situation in this OZ place. My husband invents his reality and I often wonder if his isn't better! Golly

Again, its very good to see your post, Mary. Keep up your good work!
Take care
Judy

Mary, good for you for sharing with your daughters.We all come to a point where we doubt our abilities to give the care needed.It is good hubby is away and you have time to your self.You need that to regroup and get perspective that distance allows.
I wonder how I was able to care for my mother, my aunt and husband.Maybe the fact I was younger came to play.Even though the demands were different for each it was still alot of physical and emotional demands.Just thinking about it tires me at 64.You will know when you are unable to deal with all the demands , with family you will make the right choices.

May, Thanks for your kind words. I agree with you, it really helps to be understood by others in the family. My daughters are my sanity! I shared with all 4 children about that specific conversation and let them know my doubts about living alone with him and how much I could do, how much longer I could work, etc.

He's been on a 3-day trip right now so I'm enjoying some time alone to regroup. -Mary

Mary, It is nice to see you post.So sorry you are feeling the stress of the day to day situations with be so responsible.It is very difficult to feel you are carryong all the problems on your own.The shoulders become heavy and the emotions become over whelmed.When we hold feelings in for long, honest feelings, they have to come to the surface in some way.It is like a cleansing of the souls.I would say what you are feeling is felt by many.Have you thought about sharing your feelings with the family.It has nothing to do with the love you have for hubby.It has to do with 2 people who depended on one another and now all is on one.It does you no service to not share your emotions.You are human .Possibly a few days away , doing something you really want to do would help.It is temprary but sometimes distance from any situation helps.Your husband denies because he does not realize his problem.He sees himself as the person he once was.We all have had to step out side what we know to be the norm and go inside their minds.

It's been almost a year since I started this thread. Hu is doing pretty well, but I fear that some things have become easier to manage because he has slowed down a bit, saying things like "I don't feel like doing that today."

I think his memantine is not helping as much as it did the first year. I know that is to be expected.

A few weeks ago I was really frustrated and burst out crying in front of him, said, "I hate this disease!" Well then he wanted to talk. So I risked and probably said things that were not good for him, but boy did it feel good to say a few things to him and let him see my grief for the first time in 5 years.

I told him we live in 2 different realities, that I was tired of pretending everything was normal all the time. I was tired of his trying to prove to me that he was normal. I told him I didn't know how long I could live with him alone, that this disease made other people feel crazy. We do have family nearby, but I explained that I need other people to help me feel sane.

At one point he said, "Oh, I see what you are saying, you want me to understand that we have a disagreement here, and you want me to know where you are at." I said yes, and realized in the old days he never would be that slow to wake up to what I was talking about, but he would have been a lot more argumentative. Here's where I think the disease is progressing and he is becoming weaker in ways.

Anyway, the upshot of it was that I told him to think of me as having "caregiver disease" and that I needed him to understand that, and that while he could be happy go lucky and his life was good, mine was difficult and I didn't always know for sure what he needed and I carry the responsibility for us, finances, etc., and that I still have to work.

I was worried he would overcorrect, and for 3 days he was very subdued, and he even said to me once, "I wish I could make you love me more," something he would never have said in the past, and I didn't know how to respond so just let it go, reassuring him I loved him, and he said, "Yeah, but that's agape love, I'm talking about romantic love."

Now I think he's pretty well forgotten it, but he is not as happy go lucky and that helps me, it's hard for me when he is so superficially happy (manic perhaps from meds?) and I'm working hard very privately to keep myself strong and comforted and able to keep giving to him.

We have moved upstairs in our beautiful mountain house and my daughter and family have bought a home nearby. He loves the new view up here. We have 4 guest rooms and family and friends come to visit and ski here in Park City. He loves having guests. I love it too, but it's a lot of work for me, I get really tired and wish I could do more. He has helped me fix things up a little, putting caulking in cracks, etc. He has even done a little more sanding and varnishing of tree stumps for end tables, but his care about detail has gone, and I have to watch and get him to fix things when they aren't good enough. Other things I just let go, who cares. He loves doing it and is so proud of his work.

Happy New Year to all you caregivers! We are doing worthy work, as real and meaningful as mothering an infant.....

Mary Morken mtdaily@aol.com

When I was diagnosed in 1996,I helped my hubby learn about AD.I was a former registered CNA,so I knew what I was facing.
I got my DPOA & POA's done,& we went on living.Yes,things have changed some,but our life really isn't that bad.I have a positive attitude,hubby does also.AND Yes,there can be life AFTER being diagnosed,IF you get an early diagnoses like I did.

Hey there, Mary ...........

Just thinking about you and wondering how things are going with you and Hu.

Mary,

I don't really have any advice to you on how to get the person you are caring for to accept his condition. However, I can tell you my experience with my wife. A few years ago the doctor told my wife she had Dementia. He said it could be related to Alzheimer's but couldn't know for sure without an autopsy. Hence, she knows and accepts that she has Dementia but anytime Alzheimer's is mentioned she denies it. Dementia is ok but Alzheimer's is NO NO. To her, anyone with Alzheimer's is put in a nursing home and she isn't ready to go live in that kind of facility. That is her attitude. She will admit to others that she has Dementia but don't ever mention Alzheimer's in her presence. She gets very upset and emotional.

My wife is at a point of needing full-time care. There is very little that she can do for herself. She can still walk, drink and feed herself but, she has to have help with dressing, bathing and going to the bathroom. We can still talk fairly well but she has difficulty saying all of what she wants to say.

The denial problem I have is with my daughter. She doesn't seem to want to have anything to do with her mom now. They were the best of friends until she married and her mom started having her problems. We seldom see her now. I have too much on my plate to push the issue. I have to get outside support when I need it. Our son helps a lot but he is going to school and working and doesn't have a lot of time to spend with her. He does stay with her on occassion when I need him to and he will cook meals for us when he can.

Thank you for your responses to my recent post. We have heard from Mayo since my last message and our second set of appointments have been scheduled for March 10 and 11. Roger will meet with a memory specialist and a behavioralist, and then the neurologist will wrap everything up for us. At least this time we will go to Mayo knowing what the time frame will be, so I won't pack everything but the kitchen sink, like I did last time!

I am doing well and am so relieved that I'm getting concrete answers. We visited our daughter and her family yesterday, and I was reminded once again, how difficult it is for Roger to be out of his niche. While at home, we do quite well, but given any change of routine, and his true colors show.

Thank you all for your support and caring; it's comforting to know I'm not alone.

Love, Chris

Hey there, Chris...

You certainly do appear to be on your way with finding the reason for that "nagging feeling" there was something more wrong with your husband than his previously diagnosed normal pressure hydrocephalus. Although you didn't mention it, I take it the "commute" was uneventful?

It is amazing how many neurologists are resistant to using the "A-Word" but the good ones keep going until they really know what the root of the problem is and share the findings with detailed information and much care. As I'm sure you are, I'm hoping for a speedy answer here and a proactive treatment plan to not only enhance the quality of your husband's life but your own as well. Caregiving is difficult enough without knowing all we can and doing all we can.

Just one caution here... You may not hear the term EOAD since that diagnosis is typically reserved for those effected with the genetic form of AD. If the problems are related to AD, you might hear the term MCI (Mild Cognitive Impairment) or even Early or Mild Stage AD. There are multiple treatments available to offset symptoms and please know that "dementia" itself may be staved off for some time. I sure hope so for both of your sakes.

Please keep in touch with us, we're pulling for both of you!

Joan Marie

"Dream as though you will live forever. Love as though you will die tomorrow."

Chris, good to hear you are going to find answers.That will allow you o know what you will be facing and how to deal with the problem When a person is in denial it stems from FEAR.Fear is such a strong emotion and I can understand the not wanting to believe something has taken over ones body and you have to control.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

I have had many in denial over my AD.I just ignore them.That's their problem,not mine........

Lynne

Hi all,

I thought I'd take the time now to dash off a few lines updating you on our visit to Mayo. Roger and I headed to Rochester on Sunday expecting to be there for three to seven days. As it turned out after spending an hour or so with the neurologist, he had a pretty good handle on what was happening.

After reviewing my narrative, the progress notes from Roger's various doctors, and the CT scans and MRI, the neurologist was able to see a real deficit in his short term memory just as I had described. So, rather than ordering an MRI, he felt it best for Roger to see a memory specialist, which will be scheduled in a couple of weeks. The neurologist wasn't ready to actually say "Alzheimer's", but it's certainly looking that way.

I have felt all along that we were probably dealing with something more than normal pressure hydrocephalus, and we're getting closer to an actual diagnosis. The neurologist also ordered some lab work to rule out any other causes of dementia. So, once Roger meets with the memory specialist and gets his spin on things, and we get the results of the blood work, then the neurologist will give us a diagnosis.

Although I'm quite sure the diagnosis will be EOAD, I am glad that we went through the motions of going to Mayo, so I can know that I've done anything and everything possible for Roger.

Thank you for all of your support; I am anxious to hear your stories of reaching yours or your family member's diagnosis of Alzheimer's.

Love, Chris

I think it's so sad when a person is in denial.Think of the things they are missing out on as they are afraid someone might find out................

Lynne

quote:

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One more update. I told him the other day when he woke up from a 2-hour nap that he is sleeping more these days, and that's okay, but it does indicate something. He said, "Well something must be wrong..." but he didn't want to pursue it so I just left it at that.

Some days he doesn't shave in the morning like he always used to. And when he takes his nap he sometimes asks me to rub his head which is new. I rub his head every night though.

Well, I noticed he had missed some hairs on his neck so I said, "Let me get your razor and take those hairs off." It did it playfully and said, "Someday when you get old I'll shave you like this...." He hummed happily.

-Mary

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What a picture you painted here, Mary. I can almost see you and Hu BUT the happy humming came through loud and clear!

Peace in your hearts...Joan Marie

"Dream as though you will live forever. Love as though you will die tomorrow."

Mary, when to people have the loving relationship you and Hu have it is so normal for one to want to protect the other.Little by little he is feeling compfortable expressing his knowing things are different.The fact that he made the statement to an open audience that what I do depends on what my wife believes is best for my health was so revealing.I believe your method of feed back to him allowed him to see that you are not a china doll that needs to be protected from the truth.I believe your remarkable way of opening the door for compfortable communication will allow Hu to feel safe and more willing to share all he knows and feels with you.I have no idea if your hubby always tried to shelter you from pain and sorrow.Now you have taken his lead and showed him you are trying to do this for him.Continue to have confidence in your self and your ability to break down the invisable wall that you must feel exists.If I can see your method and confidence is special , Hu will also.You continue the good work and effort.It will prove to be very benefical to the entire family.Actualy your approach may benefit others when trying to seek information from a loved one without alarming them.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

May, Thanks for your ideas. It never occurred to me he might be wanting to protect me! -Mary

Mary, possibly Hu, was a little releaved to have you confirm what he allready feared.Possibly he was trying to protect you in his own way.Your opening the door in such a wonderful way may allow him to feel he is able to be open with you.He may see you are strong enough to share it.Many times they want to protect the spouse.Now he knows he does not have to hide thing from you and is free to be more ope to what he knows is happening.He has seen your strength and feels your courage and will to help him. You may have set him free to share all his fears and symptoms that he is aware.

Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keeping what is worth keeping, and with a breath of kindness blowing the rest away.

One more update. I told him the other day when he woke up from a 2-hour nap that he is sleeping more these days, and that's okay, but it does indicate something. He said, "Well something must be wrong..." but he didn't want to pursue it so I just left it at that.

Some days he doesn't shave in the morning like he always used to. And when he takes his nap he sometimes asks me to rub his head which is new. I rub his head every night though.

Well, I noticed he had missed some hairs on his neck so I said, "Let me get your razor and take those hairs off." It did it playfully and said, "Someday when you get old I'll shave you like this...." He hummed happily.

-Mary