Is he ok?

Jarmac

I went to breakfast with 2 girlfriends today. I was accused of wallowing. My friend thinks I’m wallowing because I just had a hip replacement and a pneumonia diagnosis last week. She doesn’t know my SO has short term memory loss. She doesn’t realize I’ve been confined for a month with constant repeated questions, aggressive behavior, etc. I have just joined this group and realize his diagnosis is way easier than others. Friends are starting to notice. “Is he ok?” “Is something wrong?” SO is in total denial…insists there is nothing wrong. When do you start to share? How do you share?

Joe C.

Jarmac, I think most of us have difficulty sharing what going on in the early stages because we wish to protect our LO’s dignity. That being said, I believe the sooner you can find a close friend or family members that you can confide in the better it will be for you in the long run. In hindsight I wish I had started sharing earlier.

mrahope

Just my .02...I kinda think a hip replacement and pneumonia entitles you to a bit of "wallowing" if that's actually what you were doing.  Then add on top of it a spouse with memory issues and it is a pretty tough life for you at the moment.

I totally understand the same questions over and over.  It's heartbreaking.  As for sharing, my sisters, children and close relatives were seeing it for themselves.  I've only shared with one close friend who shared with me that her spouse has issues, too.  For people not quite as close, I've simply said, "His memory is not what is ought to be" and even that only if there was a reason to include it.  I agree that this is a way to protect our loved one's dignity.

It's part of the reason I'm here.  I don't actually share that much, but when I read other's posts I feel understood.

Ed1937

He likely is not in denial. It is a condition known as anosognosia. Here is a good link for that.https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm  

As soon as I found out about my wife's diagnosis, I shared it with all of our kids. I called them all together, and laid the cards on the table. Other than that, I only shared it with people who needed to know, usually in the medical profession. But when others became aware of what was happening, they were all supportive. Whatever you do, it will not be wrong. Just don't bring it up to him.

Iris L.

Jarmac wrote:

 My friend thinks I’m wallowing 

Outsiders who have not been caregivers to a PWD (person with dementia) really don't understand, and their input is not credible.  Don't listen to them!  Read a lot of threads and learn from the members.

Also, anosognosia is real, but many people, even some professionals, don't understand it.  You will have to learn work-arounds from the members.

Iris L.

sandwichone123

I started sharing before we had a diagnosis. Family had heard about his symptoms from the time he started having trouble finding words. He was diagnosed the end of March 2021, but the previous Christmas I sent out a followup to my upbeat Christmas letter and said he was significantly declining. This went to *my* support people--my family.

By March I had to intervene to get him retired out of his job, but it was already clear to his supervisor that he was not functioning--he really hadn't done any productive work in months. So I had to tell his employer. By summer I was concerned that I would also lose my job, and I didn't want to find myself widowed, unemployed, with no current experience or contacts, so I talked to my supervisor. I remember telling her, "Please remember me as I am now, not as I am by the time I have to quit."

I told his family the following September, as his parents had him listed as executor for their wills.

harshedbuzz

Yikes! That's a lot on your plate. The intersection of joint replacement, pneumonia and dementia caregiver is not a spot I would wish on anyone. 

Iris is spot-on that it is best take the opinions of those who have not walked this path with much salt. Dementia is something you have to live with to really "get". Even those, like me, who have lived through dementia with a parent or other relative, can't fully appreciate the impact on a spouse or SO. 

When people think of dementia, they think of it in terms of memory loss, but it really is more than that. There's often a subtle shift in executive function/reasoning skills as well as empathy early on. I saw this with my dad and mom's knee replacements. She had the first done before his diagnosis (I was pushing for an eval but she was seriously in denial)-- he got lost trying to find the hotel across the street from the small specialty hospital, slept overnight in the car and then camped out in mom's hospital bed until her team chased him out of it. He also ate her meals, went out and bought a new Ford paying the MSRP, did nothing in the way of caring for her post-op, and interfered with the PT who came to their home after. By the time she had her second knee done, he was even worse about ordering her around to do things for him and believed he'd had the surgery. 

The article Mayor Ed posted is a good one. I found it really helpful for understanding why my dad behaved as he did. Understanding helped me be more compassionate and to respond in ways that damped down some of his unpleasantness. Dad was not the pleasantly befuddled version of dementia especially in the early and middle stages of the disease. One thing I found about dad's dementia was that there were uniquely awful aspects at each stage; in some respects, the later stages were easier for both my mom and me. 

That said, there are certain dementia behaviors like repeating questions in a continuous loop or shadowing the sound benign enough until you have lived them. It would be useful for you to build a support network for yourself. We're always here. Most communities also have IRL support meetings. And if you have a close friend or family member you can lean on that would be great too. IME, if you don't provide and explanation for a LO's behavior they will come up with something on their own and it might be less respectful of his dignity.

HB

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Davegrant

Jarmac: In my experience it is very difficult to explain this disease to others (even family members) who have not had any direct experience but to those that have been a caregiver , no explantion is necesssary. I find almost instant recognition even when they are strangers. 

 My DW after five years of MCI has retained a lot of her old chit chat and can present a pretty good picture of things but most of it is not true. In the chit chat world we usually accept what people are telling us.  My DW has always been the lead talker in a group conversation. She is entertaining in many ways and nonfontal. 

 Asking "who is coming over today?" is not offensive in any way except when you are asked that question ten times a day, everyday,  for five years. Then add to this situation many other odd behaviors that are different from the last fifty-four years of marriage like shadowing and suspicion. Living with a person whose personality is changing is confusing and challenging. 

 I find understnding and support among those who have directly shared this dementia experience. There are some people without any direct expereince who are compassionate and can be helpful but they are rare people. I try to stay with my tribe.

Dave

eaglemom

When you tell people is a very personal decision, as is how much you reveal to them. First off you have to be comfortable in what you are sharing. You don't have to share everything with everyone either.

Sadly you will probably find some 'friends' slowly slip off your radar. That isn't about you or the the reveal of a diagnosis, its totally about them. They are uncomfortable therefore they slip away. That can be true of family. (On a personal note, that happened with DH's diagnosis and its painful, I won't lie. I wasn't prepared for it, thus my warning to you if it would happen to you.)

But the good that came from the diagnosis is the new 'family' that we now have. Through support groups & other activities we joined we seriously have much closer friends in those people than family we've had our entire lives. Its because this new 'family' understands what we're going through, they get it. Our closest friends are even closer, they aren't living with the disease, but they are walking the walk with us.

When the moment is right you'll feel free to share with your friends. If they are good friends they should already know something is going on and possibly be asking if everything is okay. You can simply say, no its not okay but I'm just not ready to talk about it yet. 

eagle

Gig Harbor

I told our close friends but they already could see changes. I joined a support group and started a second one. It was easy to talk about his decline in a room full of strangers when they were going thru the same thing. I finally started telling friends actual examples of how compromised he was so that they understood that this was an evolving decline.

A. Marie

Jarmac, I don't agree with some others on this thread that secrecy about the situation is "protecting your LO's dignity." In fact, I think it's quite the opposite: Secrecy just gives other people the go-ahead for gossip about "what's wrong." 

I notified everyone important to us about my DH's diagnosis the moment we had it--and although a few folks have indeed peeled off because they're uncomfortable with the news, everyone else has been completely supportive. Consider it a way of finding out who your real friends are.

And when embarrassing situations happened in public (before DH's placement in an SNL 1.5 years ago), I'd just give a weary smile and say, "Please forgive him. He has Alzheimer's." The responses were 100% understanding and helpful.

Janco

I have recently begun to share with others more information concerning my husband's MCI.  By this time (about 4 years after onset), our close friends have seen examples of his forgetfulness and ocassional confusion.  The other evening we went out to a food court type place and he forgot from which business he had ordered.  I went around with him and luckily we were lucky in finding it on the second try.  Our friends made no comments; they understand the situation.  Acquaintances have asked me if every thing was ok with him.   Things are not always noticiable but if you spend time with hubs you will notice memory issues. Keeping the whole business secret or underground is not really possible and will have no positive effect on the condition or your and his/her life. I still have some reluctance to talk about the MCI but that is my issue: talking about it means thinking about it and facing the facts of the life ahead.  Iwould rather hide myself under a stack of pillows, but that would not be helpful!

60 falcon

A. Marie, I'm glad you posted because I agree with what you said.  I also agree with nearly everything the others said as well, except for the not sharing parts.

People could see for themselves that something wasn't right with my wife.  My wife and I both chose to not keep it a secret, though we didn't share much in the way of specific problems.  Like you said, if people were going to gossip or talk about us behind our backs, they at least knew the real cause.  Nearly every "friend" of ours drifted away, but that was going to happen anyway.  And also like you said, when there were issues that happened in public, people were always forgiving or understanding once they were told the reason.

Particularly early on, we were both devastated and scared.  I think it was in some ways beneficial to both of us to tell people, maybe kind of like venting.  We were in our early and mid fifty's when our journey through hell began and it's not like people would just assume her problems were related to "old age".

I want the whole world to talk about Alzheimer's and all the other forms of dementia.  The more the better.  I think there's too much secrecy. I think there's a stigma associated with dementia and too much embarrassment or whatever you want to call it.  There's nothing to be ashamed of, there's nothing to be embarrassed about.  The more people know about it, the more people hear about it, then maybe there'll be less dignity to be lost?

A. Marie

60 falcon: Amen, brother--especially your last paragraph. An Alzheimer's diagnosis is no shame and no disgrace. The sooner we can get this message out and about, the better.

Dio

In our case, it started out as severe psychosis, so only a few members of my family knew because he didn't want anyone else to know. Once we received a dementia diagnosis, I started letting people know, especially his work colleagues who saw his mental decline and subsequently speculating why he was on such a "long" short-term sick leave. It was needed not only to clear up any misinformation through idle gossip but also to spread awareness about dementia, that it's so much more than memory loss.

Rescue mom

Amen to what some others said. Alzheimer’s is a disease, no more reason to hide or keep secret than any other major disease.

But even before we had a formal diagnosis, people noticed my DHs odd behavior and comments that didn’t make sense. (He was well-known in the community and in public view  a lot). I learned later there were ugly rumors about reasons for his “off” behavior. But once people heard Alzheimer’s, they were always kind and understanding. I didn’t broadcast the Dx to the world, but with people who dealt with him, better to know the truth than speculate.

Jarmac

Thank you for all your replies and suggestions to my topic

Kibbee

When I was still working I did not share information about DH with my work colleagues. For many reasons .. including his privacy and dignity, and not wanting to continually have to respond to the question "How is your husband?"  (They didn't know him but people will ask to be polite.).  Plus I needed work to be a place where I could focus on things other than his situation.

Since I have retired, and since his health has declined to the point that I need a caregiver in the house if I am going to be gone, I have become more open about it with friends.  I don't dwell on it when I am with them, but do make a quick comment or update so they have a realistic understanding of his situation.  They know him and are genuinely concerned, but I don't want to be the group's resident Debbie Downer, and it's not the conversational topic I want to focus on during those rare outings with friends.

However, I am fortunate to have a dear friend of many years with whom I can be fully open about the good, the bad, and the downright ugly.   He is caregiver for his Mother who has dementia and we are living through much of the same care experiences.  It is a relief to have one person with whom I can share stories of bathroom adventures and those fun times that require a "clean-up in aisle 9".  We can unload and laugh and get our heads straight again, ready for the next challenge.

So sharing has been good for me, as long as the info shared in appropriate to the audience.