Hello I read posts everyday, but do not post often, but today was a bad day and I guess I just need to share with people who understand. My husband was diagnosed in July. His symptoms seem to have accelerated very quickly. He returns to the neurologist October 7th and is on Namenda. Today a coworker asked how he was doing and I told her his symptoms were changing quickly and that I am praying that they will slow down with the meds. She then proceeded to tell me "Well, you should be praying that they speed up so that you can get this over quickly." I have to say that her statement actually took my breath away for a moment. She then related how her neighbors wife had Alzheimers and taking care of her almost made him crazy until she died. Her statement and the manner in which she said it really was upsetting and I have found myself very emotional all evening. I know I need to toughen up, but just needed to share with someone who understands.Thank you

I'm sorry you had such a rough day. Your coworker was really insensitive to say the least! Her neighbor's experience may be very different from yours. If you know one person with AD, you know ONE person with AD.
I think that if I were you, if this coworker inquires about your husband again, just say "he's doing fine, thanks for asking." and then change the subject.
I hope that tomorrow is a better day for you.

I'm sorry you're having a bad day. Here's a big HUG for you!

I've met some people at work who have had parents go with alzheimers and I've heard alot of the same remarks. It seems cold and insensitive but I think alot of it is just not knowing what to say even when they've been through it. Its a struggle no one understands because everyones disease is different. I've read dozens of books on alzheimers in the last six months and all I've found is I'm still as confused as I was in the beginning.

I hope you have someone you can sit down and talk to about it and someone who can respite you for awhile. I know if I wasn't planning to place my mom in a home next week I'd be planning respite. It's very exhausting work and you're an angel for being there for him.

The people at the alzheimers association office today told me "take care of yourself". It's OK to cry and get frustrated and its OK to take some time for yourself. I know I find myself questioning everything from God to politics lately due to going thru this with my mom but Ive found it a bit easier knowing its OK to cry when you need to.

Hang in there.

Mesa1

I'm sorry your co-worker made such insensitive remarks to you. I'm also thinking it's pretty hard to make yourself immune to the hurt that these types of comments cause. I have to say that I didn't have an inkling of what a person who is caring for a LO with dementia goes through until I embarked on the "adventure" myself. I'll just pray that your co-worker never has to experience the pain and loss that you must be feeling.

Hi rholl !!

I just wanted to add my {{hug}} to those you are getting. This is a wonderful, knowledgable and caring place to come to on the days we need it the most. Today sounded like it was one of those days for you....

July must seem like only yesterday, and October must seem so far away until your husbands next appointment.

Is there anyway to get his next appointment moved up?? With the onset / acceleration of new symptoms perhaps something else is going on?? With my Mom, it was always a UTI.

Another {{hug}} and hoping tomorrow is a much brighter day!

love and peace,
Serendipity

rholl, you don't have to "toughen up". Your co-worker needs a good dose of reality and an even bigger dose of empathy.

We are very careful who we talk to about my Mom. We don't tell everyone - some people we just say that she has "stroke damage" (especially if Mom is present). People seem to understand that better than vascular dementia, or multi-infarct dementia.

Sometimes the "therapeutic fibs" have to applied to the general public as well...

Dear rholl: Thimbell makes some very good points.

I am very sorry for your experience with your grossly insensitive (understatement) co-worker when you were having a very low ebb day.

You do NOT need to toughen up. Any of us hearing such a blithering input would have pretty much had a similar reaction.

You are doing okay, you are a dear person under a huge amount of stress, but you are managing. I would not discuss anything with this person any further. Simply to say, "everything is the same", is sufficient. Then, if this unfortunate person decides to unload any further, tell her, "You know, I do not wish to discuss this any further." You do NOT have to cooperate by listening to such unfortunate discussion.

Take good care of you and let us know how you are.

Soft hugs,

Johanna C.

I agree. every person that has this illness is different..it was pretty insensitive to say the least..thank god we have this forum because we truly understand..I do not even get people anymore and come here to talk...I hope you get through this ok and feel comfortable talkign to us all here..we are there for you in spirit..I know it must be devastating to watch..it has been a few months for you so it is all still new..Please came back often and let us know how appt. goes with neurologist..your both in my prayers...

My husband, age 64, was also diagnosed with Alzheimer's in July, and his symptoms are advancing rapidly. We have been seeing a neurologist since December with the diagnosis beginning as Mild Cognitive Impairment. We have tried Aricept, Namenda, and Exelon (a patch). Some of the meds made him too sick and one made his dementia symptoms worse.

Crazy comments from co-workers, friends, and even the doctors have made all of this so much worse. Even on this board you will find lots of different approaches and some of them may offend you because we all are at different stages. So much depends on the LO and the relationship you had with them before all of this started.

Our evening chat room has been very helpful for me. I hope you'll try it. And I would be happy to give personal support should you need it. You can write me at cruptier@sbcglobal.net

Hi Rholl1948,

I'm so sorry that you had an upsetting day because of your "clod" co-worker.

I can never think of anything to say to these types at the time that these incidents occur. However, here are some responses you might want to keep in your mind should this happen again:

"That's an interesting perspective."

"What do you mean by that?"

"Why do you say that?"

This puts the ball back in their court, especially if the statement is accompanied by a laser-beam-piercing look.

You have nothing to apologize for. Whenever something like this happens to me, I always ruminate about how I should have handled it better and blame myself.

Thanks for reaching out to us and sharing this. You might also want to call the 24-hour helpline if you need someone to talk this over with.

I'm sending you a soft (((((HUG)))))!

rholl1948 - you are always welcome here to vent. Everyone on here knows that I do it almost daily, and I feel better being able to get it out and know that many people on here go through the same things.

That being said, it still amazes me that people say such insensitive things. I started a thread on here awhile ago about the dumb things people say. Some of the comments are really shocking, but it does almost sooth my soul to know that I am not alone with the "dumb things people say". The absolute worst one for me, the one where I couldn't even respond was "Don't you wish your mother would just get cancer and die?". That one still stings.

My heart goes out to you and I am sending hugs your way.

One more thing, anyone I know who has had a LO with dementia, NEVER suggested hoping this disease speeds up so it's over quicker. It's the people who never dealt with it personally, just "knew people who did". I have a pretty good idea of what the end stages of the disease will be like, I don't want to get there yet with my mother. Now that's not to say I haven't had (forgive me everyone) occasional thoughts of my mother having a heart attack in her sleep and passing peacefully so she won't have to suffer anymore. But that's for her benefit, not mine. Oops, off on a tangent again. Must be this head cold.

I am so sorry you had to deal with this insensitivity on top of the demands of caregiving.
It was a cruddy thing to say. I have heard that one too.
I agree with Marj, even though mom has changed and decined over the last 5 years, I have had so many treasured moments and memories. I would never have wished for one less moment with her.
I like those come back lines, I will tuck those away for future use.

I'm not very far along this path with my life partner, but I disagree totally with what your coworker said. For one thing, it's just not all bad. There are potential gifts in this adventurous path, even though it's a path I don't think any of us would have consciously chosen.

I'm learning a lot that will benefit all aspects of my life, and my partner Marge and I have never felt more secure or more joyful in our love for each other. We laugh a lot, try new things, solve problems together. I'm learning to ask for help, to be more flexible and to live much more in the moment than I ever did before. My true priorities in life are much clearer.

Sometimes it's truly awful, like a nightmare -- but even if I knew this would happen, I'd still choose to be with her. I know much greater challenges lie ahead, but each day is still a treasure.

Stunned - is a good word for it. When people says things like your co-worker, sometimes we're just so stunned - as you said, it took your breath away- that it's hard to react. It's like being back in school when you think you HAVE to take it. Jo Anna's right - we don't. I too find myself saying 'about the same' if someone asks unless I KNOW they've been down this road before or are truly sympathic.
If nothing else, may it show us how NOT to act with others.
Here's wishing you a virtual shoulder massage... Take care -

Sometimes what seems like the right thing to say is the exact wrong thing to say. I am sure she meant no ill will in saying it, but it wasn't very well thought out.

The demands of caregiving wore me right out and there were a few times when someone would say something so blitheringly idiotic or cruel that it did indeed, take my breath away, leaving me stunned. Then the tears. It only happened a few times but it stung bitterly.

Your coworker is an idiot.

I agree with Johanna, if she asks again to say it's still the same or "it is what it is" and just leave it at that and change the subject or walk away.

What an idiot.

rholl, your co-worker's statement took my breath away, too! My favorite response to a statement like that is "How could you possibly think that was an acceptable remark to make?" I don't care if it makes the other person uncomfortable. They need to know that they are being offensive...it's the only chance they have of ever learning from their mistakes. Would she say the same thing if your mom had cancer, or heart disease, or some other terminal condition? I'll bet not.

As my mom's disease progressed, I found that people's eyes would glaze over when I gave them an honest answer to the question "How's your mom?" They don't want to know, not really, because it's just so sad. So I got into the habit of just shrugging and saying, "She's hanging in there, and so am I." It's the truth, and about as much as most non-caregivers can handle.

Mom passed in August, and I could not have made it through without the angels on this board. We are always here for you, and we understand.

-Mary Ellen