Difficulties, Decisions

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Difficulties, Decisions

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hand-457335_640If it's not one thing, it's another thing...

Recently we had another episode where Mom got upset with me for abruptly taking over something that I'd spent quite a bit of time talking with her about. The last time it was about bills, and this time about the car. I spent the afternoon with some friends who live about an hour and a half away, and I borrowed her car for the trip. We talked extensively about my plan, and I made sure to ask her permission for the car and thank her profusely. All was well when I left, but when I came home, her face was clouded over, and I could tell she was unhappy about something. She said, "You just ran out of the house and yelled, 'I'm taking your car!' You didn't even tell me where you were going!" And then what did I do? I defended myself. Because nothing else occurred to me except to try to change that false and very negative memory to a positive one. I don't know if she ever believed me, though, because she had NO MEMORY of me talking to her and asking for the car. She acknowledges that she forgets a lot, and she was sorry when she realized how upset I was. And I went upstairs and cried and felt sick. When we have conflict, I feel like we are losing our one strength, the one thing that makes this caregiving gig okay.

The next day, today, we had no more talk of my rude and abrupt behavior. I had to take my son to the orthodontist, so I invited her to go along so that we could have lunch afterwards at Ryan's. She agreed happily and off we went. My son's appointment was way too long--an hour and a half!--and we were all hungry and tired when he was finally released. When we got to the restaurant, she began complaining of a headache and upset stomach. She had mashed potatoes and ice cream. I took her and my son home, and went back out soon after to my own doctor's appointment. When I got back from that, she was feeling okay. I brought her some leftovers for dinner and then headed out to an evening meeting. I was home an hour and a half later, and she was in misery with diarrhea and painful, urgent urination. I started her on Immodium and Azo, but the urinary pain was so bad she was crying. I decided to take her to the ER, but my husband wisely suggested I try to get a prescription for an antibiotic from the on-call doctor. I did that.

(I didn't like this part, though: The doctor asked me what pharmacy, and when I gave him the name, he said, "I don't have the number of that pharmacy, so you'll have to text it to me." And I wasn't quite prepared for that, so I said, "Let me find a pencil... Okay, what number do I text it to?" And he replied, "The. One. I'm. Calling. You. From. Right. Now." I.e., "You idiot.")

Anyway, I brought home the Cipro and gave it to her and monitored her Immodium use. I thought maybe the new brain pill (Aricept) might be causing the diarrhea, since she's had several awful episodes since she started taking it. I called the pharmacist and asked if she could stop taking it suddenly or needed to taper off, and she said to get the doctor's permission before removing it, but that it should be fine. Whatever. I took it out. But I don't know what I'm doing. I feel like putting that in all caps. I have no idea whether any of my decisions are good ones or not.

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jan

I agree with everything that has been said here already, including the stomach upset from the medication. We chose to give up on the RX since the geriatric specialist said that improvement was limited in proportion to the expense of the RX and the toll on the body. I am so sad to hear about these stresses you're going thru. Your mom is fighting so hard to still be present. It is a really hard job to honor that. I support you.

Jean

Oh LilMagill, I so feel for you. Although there is no \"easy\" stage of Dementia, I think one of the hardest emotionally is where your mom is now -- when there is still so much awareness. As I was reading, I wondered about leaving her with a notebook or journal with that date, and leaving notes such as where you are going, or things you agreed on together. I see Thedobmama mentioned that also. \n\nAs far as the drugs, my mom also had diarrhea on Aricept. We really didn't notice any improvement in her functioning with the drug, but then it's hard to know if she would have been worse without it. \n\nMy heart goes out to you.

Kimberly

I know I had some tough decisions to make concerning my mom. When a side effect or reaction to a new medication or to a change in one would occur I would have to judge what to do by weighing how bad the reaction was and if she would be better off of it until I could talk with whoever prescribed it or if it was a small enough of a reaction so it could wait until I could call the doctor and tell them what was happening and ask for their opinion. And that is all it is, OPINION. Theirs is formed by med school, and ours are formed by hands on experience. One thing I have learned over the years is that they are both valuable and usually balance each other out. I have even encountered this situation with some medication I was taking myself a few years ago. One of my medications was increased, I developed a cardiac side effect, went back to the previous dose, and the side effect lessened. The doctor that prescribed it said, \"no, that doesn't happen from this medication,\" and the doctor I saw for the second opinion said that at the elevation my dose was at and that lessening it decreased the issues that the medication was definitely the cause and I was smart to both reduce how much I was taking and to have gone for a second opinion. So trust your experience and judgment when you find yourself having to make a decision.

Jen

I was just about to write my own piece about difficult decisions when I saw this. Eek. It would be nice if there was an all-out guide book to help us navigate through this stuff. Hang in there. *hugs*

Jenn

My Mom is on aricept as well. In the beginning, when she first started taking it, she would have really bad diarrhea. I questioned whether I should stop it. That was in May. Now in July, it is not so much of a problem. Her body must have \"adjusted\" some how. It is really difficult to know whether decisions are the best ones or even right or wrong. I can so relate to what you write. Thank you for sharing your difficulties. All we can do is the best we can, right; ask questions when we are unsure? Someone reminded me the other day that it is most important to DO KNOW HARM. This was a doctor. Even they have difficult decisions in weighing the risk vs. benefits with family preference. Have a better day. Thanks again!\n

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