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It's hard to find patience sometimes. Thanks for listening
My wife is somewhere on the (advanced???) MCI spectrum (not advanced dementia) and spends a lot of time scrolling through her phone and iPad emails, texts and phone calls. Today she was trying to delete a long list of "recent" (and not so recent) phone calls on her iPad, which can be done either in bulk (she is clueless how to do this) or by swiping individual ones. In trying to swipe she was "tapping" the call and it initiate a "call back" each time. So she came to me and I tried to explain how to swipe without initiating a call, and/or offered to bulk delete them for her. She then got agitated that I might delete something she wanted to keep (why, why, why???). It frustrates me to no end and I end up making her more agitated, and then I'm mad at myself for having no patience. It is so difficult to realize that she is not capable of understanding what I'm showing her, yet she still wants to do it herself. So we both end up upset. I understand this is all on me because she can't help herself, but damn it's hard. Thanks for listening.
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@oneputt Lori, thank you for your special message to me. I post a lot on here, as I find it not only tries to help others, but it's journaling for me, and it helps me get through this every day. I haven't cried, which is surprising; I think I've been so caught up in everything in our life going on that I haven't had time, and having come from IBM (before retirement) I was always so busy solutioning, that what I see caregiving as (at least at this stage). I love your great counselor idea and insurance covered. talking to people who understand is so valuable. I attended a 6 week caregivers class at the local hospital, I'm getting ready to go to their 2 hour workshop next Tuesday. I agree with you, that's important. I've mentioned this before on this site, but we heard a sermon at Christmas that just resonated with me, and I can't get it out of my mind, It was like the pastor on the video broadcasting to his 6 different churches, was talking directly to me. Even with short term memory loss, my husband said the same thing when we left - we felt he was talking to us. We had such a bad year last year, MOLD, moving out, rentals, moving out of those more mold, no insurance coverage, living out of storage, and my husband's diagnosis the day we moved out. Not to mention, the financial pressure from all the out-of-pocket cost, and we're up there in years. So it's been difficult. But my takeaway is we all have challenges to deal with, it's the courage to show up, the clarity to know what to do, (as you defined it so well in your note to me), and God's light and strength to get us through. I wake up every day and say that....I find there's this peaceful calm, that comes over me, in repeating it over and over. Keep me posted how you do, I so appreciate your post. We are not in this alone........Best, Karla
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2 Reactions@kjc48 Karla,
Thank you so very much for this timely and helpful information! I do grab the iPad and Delete and Report Spam, but I know “they” just have other accounts they send things from…it’s like the little boy putting his finger in the dike (dyke?). My son mentioned we should freeze our credit, and you are kindly reminding me again. It goes to the top of my “to do” list, as I realize how important it could be. Your suggestions are all excellent and I will be implementing them as soon as I can. Definitely helpful and caring. Thank you for taking the time to write! ~ Betsy
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1 Reaction@judimahoney
I hope they work for most people taking them! I don’t know if the oral ones have helped my husband or not. One was started at 8 mg, then changed to 16 (Galantamine). The higher dose gave him nightmares, so back to the 8. He is scheduled, as I mentioned for the PET scan and possibly after that will begin infusions…so we will see. He wants to try anything that could help, and while I’m a little skeptical, if he wants to try (and I know others here feel they can help) then that’s what we’ll do if the doctors give the green light. Best to you.
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1 Reaction@kjc48 Karla- Hi. You and I are alike in that I also read too quickly and then have to go back for retention. Thank you for letting us know how the infusions are going for your husband, and I agree about flying with the concerns of brain bleed or swelling! When it comes to filling out forms in doctor’s offices etc, my husband has started handing me the paper, saying “you have better handwriting”. That is true, but I also feel it must be overwhelming for him, as is fixing himself dinner…he, who used to cook most of our dinners no longer grills, and a few weeks ago, I had had a big lunch, and wasn’t hungry. There was salad made and cooked chicken in the fridge, so I mentioned that…I went out in the kitchen a few minutes later and he was eating a protein bar. Then I felt bad for not realizing that even prepared food was too much to gather (at least that night). Thank you for writing to me. I so value this group. I do see a counselor, but you are all here when I need to vent! She is on a fixed schedule! Thank you all, and thanks to Mayo Clinic for providing this space and encouraging us all.
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2 Reactions@moea Everything you said resonates with a lot of us, I think…I know it did with me! we are on the path toward infusions, depending on MRI and PET scan results. Re: Shower temp. My husband seems to think his food is not hot enough (calls it “room temperature” some nights) - yet the times in question are when I got a baked potato right out of the oven, cut it in half and gave half to each of us. I almost burned my tongue, as it had been in the oven 1.5 hours! Is it possible people lose their ability to sense when things are too hot, be it a shower or food? Similarly, he now says the Planters mixed nuts he’s eaten for years have no salt…so I do believe his taste buds are changing (the nuts seem the same to me). IDK. Take good care.
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2 Reactions@2me I know the meal thing is real time consuming. I was okay with it for a while, then I get in a rut. My husband doesn't cook at all, never cooked. I remember the one time I asked him to reheat cornish hens, and he put the oven on self-clean, and I couldn't open the door! Dust to ash, cornish hens. What I am finding, is that when I do cook, he eats EVERYTHING on his plate. And I want to make sure that he's getting enough protein, good food, whatever that is for the brain so I"m trying to cook something every night even if it's just for him. He cleans his plate. It's funny to see; nothing wrong with his appetite. The whole Mediterranean thing, although my husband still likes fish and chips, fried, etc. so I'm retweaking things. Hearty beef stew, chicken pot pie defattened, tonight I have filet I'm going to give him with shrimp, But I don't do alot of beef. I have IBS, and all kinds of GI, especially from the stress of all of this. So beef isn't my friend. I'm trying to freeze a few things, and the grocery store here has some great prepared meat balls, etc., and chicken cutlets prepared, I freeze, and then do marina and melted cheese on top for chicken parmesan. It's not the way I used to cook, but I'm trying to "lighten the load," I have the grill, but I'm not out there much. Beer can chicken on that grill is good, and my husband likes the crisp crust.....Then you can do chicken pot pie the next day with leftovers, but don't make the crust. Just take puff pastry, cut it into thirds, bake it till it raises crisp at 400" degrees, and serve it with the creamy pot pie filling with chicken and vegetables. That's hearty for your husband. If any leftover, freeze the filling, then you can take it out, and add broth, and it makes a good soup. You can tell I like to cook! Just trying to find ways to relieve this 36-hour day......Great hearing from you this morning. Keep up the good work! Best, Karla
Best, Karla
@2me Betsy, definitely make that freezing your accounts a priority. You'll have to go in separately, freeze yours with a log in into experian, equifax, and transunion, and then create a log in for him in the same three places.
I'm told if you fraud alert on one, they transfer to the other two, BUT on the freezes you have to do them separately. It's just easier for you when you're in the account (your sign on and his), you do the fraud alert, and at the same time do the freeze for a year. Then you'll freeze again, after the year is over.
With what's going on and the uncertainly of that "little boy putting his finger in the wrong places," fraud alert and freeze, even if you do one account a day. Sorry to sound like a "caregiver's nudge. But yikes we were hacked into. What a nightmare. and I still keep getting messages that my phone number is on the dark web, etc. It's scary stuff. My husband watches all these videos and that frightens me too, as some of those websites aren't secure. Oh well.......
Best, Karla
@2me PS, Betsy, maybe you can get your son to help set up those credit union accounts for both of you and he can go in and do the freeze and fraud alert. Leave the technology to the adult children, it's one thing off your plate! '
Best, Karla