Being Alz”hammered”

jbrocks · January 19

Anyone been Alzhammered? Allow me to explain. So there you are finally taking time out, you go for a few hours out to relax and some of your acquaintances happen to be there. Mine happens to be the local Moose Lodge. Not so much friends but people you hang out with when you're there. Everyone asks you how your LO is… how are they doing? You feel that you need to tell them and make some commentary as to how they're doing. In my case, the truth is that he's getting worse and hallucinating. You go through this X 10 people. Then, x10, you have to hear about how they know someone who’s mother, sister, husband, etc. had Alzheimers disease and how horrible the disease is and what a mess of a life they had. (if they actually knew what 24-7 was, they'd not even ask you). Somehow they always end the conversation by saying “oh, I hope you’re taking time for yourself and taking care of yourself - You know you have to do that from time to time”

debriesea · January 20

Time to say, “I’m on an Alzheimer’s bteak. What else should we talk about?” 🙂

“Call me later…”

sandwichone123 · January 20

When people ask me how he's doing, unless they're close friends that actually want to hear it, I say, "about the same," or, "you know how Alzheimer's is, it's a one-way street." I don't want their advice and I really don't want to hear about their grandmother.

Pat6177 · January 20

oh, how I hate it when people say that to me! DH’s Neurology NP always says this and I want to scream!

justbreathe2 · January 20

It’s difficult for to know what to say. I usually say “about the same”. Sometimes I say too much.

But there are those who are family or friends and do not even ask, and will avoid you if possible. My DH was helpful to some of them and that bothers me they do not even ask about him.

I am sensitive to all of it right now.

Biggles · January 20

https://alzconnected.org/discussion/comment/234453#Comment_234453

Yes I too am over sensitive at the moment. I get sad and angry if people either ignore or make stupid comments, and I cry so easily if anyone offers any kindness, sympathy or understanding. It’s strange I can manage our slow hand in hand wander around a shopping centre with our emotional support puppy trotting along with us. People often glance or stare then divert their comments and attention to our puppy it seems to work a treat but it’s so tiring. Same when someone asks how my DH is doing my off hand reply is fine you should see him with the puppy …. and then I proceed to blab about the antics of the puppy. Again it often leaves me quite exhausted.

Jgirl57 · January 20

Alz”hammered” !! That’s a good one!
yes, it is exhausting

fmb · January 21

I operate on a need-to-know basis. My standard comment used to be "Hanging in there". Now that he is nearing the very end, it is "He's stable" (even if he isn't) just because of the sheer exhaustion of having to explain it to everyone. I mean, no one really wants to hear about the medical details anyway.

When asked how I am doing, I used to also say "Hanging in there", but now it is "I am exhausted". I know they mean well when they tell me to take care of myself, but I have to be the eyes and ears of the facility staff because they simply cannot observe him all the time. In the past five days since his crisis I have spent most of the day and two nights (no sleep) with him. I'm the one who caught him gasping for air and alerted the med tech to start the morphine. I am the one who puts his cannula back on when he removes it multiple times a night. I know I am walking a fine line with pushing myself this hard, but I simply have no choice.

Having said all that, I am simply grateful that they ask. Many of our acquaintances are simply trying to show understanding by telling about a PWD that they once knew, even though it is a ham-fisted way of showing support. Some I know from church also tell me how wonderful it is that he will be in heaven with Jesus and will be made physically whole, etc. I finally told one couple, "Yes, I do believe that, but I am still stuck here on earth and am grieving."

What I especially don't want to hear right now is how DH's end-of-life morphine and Ativan are "killing him", "shortening his life", "unnecessary", etc. I am getting that from DH's own daughter, and she has not been dissuaded from these opinions even by talking with the hospice nurse. Although not previously obstructionist, she has not been involved in his care other than weekly visits for an hour or so, and she won't even come see him unless I am there to talk to. Simply put, she does not get a vote regarding his care. Period. In her case, I have decided to no longer tell her full details of his condition. As far as she is concerned, he is "comfortable and well taken care of".

Sorry this reads like a rant. I can't unload like this anywhere else. Thanks for listening.

Being Alz”hammered”

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