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Navigating My Husband's Alzheimer's Disease

"The single hardest thing about having a person with Alzheimer’s is the future, because we really, we just go day to day."

Mary Catherine O'Brien

Transcript

I believe Greg was hiding his progression of Alzheimer’s from us.  So, we didn’t know as much, although what we had seen, I’d seen an increase in his frustration, in his anger, in his impatience, and that caused a lot of turmoil in our marriage and our family. I think he was hiding it, and he knew something was wrong, and once we got the diagnosis that was a relief.  It was devastating, but now we had something to tag onto what was happening to him. 

So, I always say get the diagnosis.  Go for it.  Don’t be afraid of it.  It only gives you more peace and strategies.  Like, if I didn’t know that he had Alzheimer’s I would not have the strategies that I have today and the support and finding out from people what to do.

My responsibilities since he has Alzheimer’s it’s more–I’m now all-encompassing the house, the finances, the bills.  We need an electrician.  We need a plumber.  We need this done.  His focus right now is on his writing and what he can accomplish in a day, and he doesn’t have a lot of reserve to be doing the miniscule things that require everyday living.  So, that has been increased tremendously, and the driving.

My son, Conor, and I, we’re the primary drivers now.  If he needs to be picked up, because he’s coming back from a meeting in Nantucket at 8 o’clock at night, he can’t drive home.  So, all that impacts our lives, because we have to change our schedule according to what he needs. 

I think our relationship, since the diagnosis, it’s all been a good thing, and we’re not down the road yet.  We’re not into the ugly part that’s going to be—I don't know what that will bring, but our relationship is good.  We’re fighting the same path.  We have the same goals.  We want our kids to be well and with us on this journey.

Communicating with Greg—he’s a very strong personality.  He always has been.  So, he’s very opinionated.  So, I’ve found that there’s certain subjects, you really have to bring it up at a time.  It can’t be at sundown.  That’s not the time to talk to him about finances or selling the house or whatever, anything that’s going to exasperate him.  You really have to pick your time, and the nighttime is the worst.  The whole sundowning phenomenon is real, and it’s very frustrating for Alzheimer’s patients.

When Greg gets upset, and he will be sitting here on his laptop, and he just will burst out, and he’s angry, and he’s confused, and he will verbalize that say I’m so confused, I’m so confused, and what’s difficult is that I’m always saying can I help you, what do you need help with, and that makes him angrier, say I don’t need your help, I don’t need your help, and I think that’s the frustration of knowing he can’t fix it, and I think the biggest thing, we just try to keep it calm and try to be more patient, and not get upset when he’s repeated things a dozen times, and it’s all about patience and sitting back and realizing what it is.

Any kind of advice in living with a person with Alzheimer’s is it’s a patience issue.  It’s let them scream and get upset and frustrated if that’s what they need. A lot of times when Greg does have his outbursts here and Conor might be in another room, sometimes I just walk in to Conor and just look.  I’ll just say what is he so upset about.  So, Conor, you’re just shaking, because you just can’t figure out, but it’s nice that he’s still here that I can run in and say he’s driving me crazy, I don't know what to do.  So, I don't know there’s not a lot of—because everybody’s different.  Everybody’s different.  Some people don’t have outbursts.  Some people do.

The single hardest thing about having a person with Alzheimer’s is the future, because we really, we just go day to day.  I don’t know what’s going to change in his personality tomorrow.  I don't know what financial issue is going to come up in a week.  The hardest part is not knowing what the future brings.

It’s very hard to have been married to somebody for 40 years, and they won’t remember that we went to Hawaii one time, that we got engaged in Maine. Those things are very hard.  So, I think it’s the future that’s hard.  Right now, things are good, but it’s what’s ahead.

Because I’m still working, and my life tends to be I work, I come home, I do whatever has to be done, I find that I’m pretty tied up in that right now, and it’s probably a blessing, because it doesn’t make me think about the future that much.  My future right now is selling this house, getting Greg into a situation where he is familiar with his surroundings and it’s smaller, it’s more manageable.  That’s my future right now.  Am I in denial? A little bit that the future will bring about what we all dread the most.

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