It's hard to find patience sometimes. Thanks for listening

@judimahoney Thank you for making me laugh this morning! HeeHaw!

Yes it is hard; we've been in a rental now since October 15, and my husband with MCI still has problems sequencing the steps on how to turn on the SMART TV. Last night on his computer was the same back and forth. It's so hard because they won't relinquish control and we walk a fine line in trying to help them and/or taking over and doing it. I suppose that's half the battle with this disease and the ways things will go, until they know longer even remember the TV or their boat at the boat dock. The challenge for me, and I'm sure other care givers, is what's going on when they're clicking things on their PC (or the phone) causing potentially being hacked. (which happened to us in 2024) and took 6 months to get it cleaned up. Oh well, the courage to face another day, clarity for grace under pressure, and God's light to shine his love on all of us throughout our day.

@kjc48 - wow…having experienced a little of what you are going through, I understand what you are feeling (at least to the degree of our journey) and applaud you for your patience and perseverance (what choice do we have about the latter?) We are in the transitional period also, where he sometimes asks me to “help” (take over) the finances, bill pay etc and sometimes he just goes and does. We’ve had some checks returned, so I guess double-paying is better than not paying. He is in line for his PET scan to see if he can proceed to Lequembi infusions. Please know I’m all for trying it if it will work (he really wants to do the infusions) but I’m skeptical, as how could anyone really tell if it is working? It is to “slow memory loss”, not stop or reverse it, so in what way (other than maybe the scans) would we know? It seems to me (a non-scientist and non-medical person) that you might have noticed something after 16 infusions. Please know we are all here for you. I’m so thankful for this group! Best wishes.

@kjc48 thank you for sharing your experiences, many of which plague all of us….the hacking terrifies me, as my husband can still do some things on his devices, but constantly is asking for help with junk email (some political, some much more dangerous) and texts. When he asks for help, I’m happy to do what I can but I’m no tech expert; wish I could just get all the bad stuff to stop coming in. I don’t get nearly as much junk as he does. He took it to Verizon and they said there was nothing to do but change his long-standing email address. We just keep plugging along…trying to learn as we go. Take good care….

@2me What you can do on his PC, is on all the junk (like I did on my PC) go in and scroll down to the bottom of the junk email, and opt-out of what's being sent. There should be an unsubscribe that you can click on, and you will get another screen, where you click on unsubscribe all. That helped me in cleaning out a lot of what I was getting, but I still have to do it, sometimes, as even when you opt out, they keep sending junk. Just keep doing it.
Also, on getting hacked, and I'm sure you've thought about this. Make sure you go into all three credit bureaus. and put a fraud alert and freeze on all three, Experian, transunion, and equifax. You can do it online, it's not difficult. This will prevent anyone trying to open up an account. Which means, if you are purchasing something and opening up a credit card, or trying to get a loan for something, YOU will have to go back in and unfreeze your credit, so they can open it up. Then you go back in and freeze it again. After getting hacked into, I just leave all three credit bureaus, on fraud alert, and on freeze credit. It just gives me some peace of mind, especially after what we went through where someone or group of people got access to my husband's computer,. It tooks us 6 months to clear all of this up. I worry with him up there clicking on things day in and day out. Know that I'm no tech expert either. I also established a process with my husband, where in the morning, I go up to his computer, and help him clear some of his junk. I tell him that I'm looking for any notices from the doctor, and/or appointments that have to be confirmed that go directly to him, and bills that someone is requesting he pay (since I'm trying to do that together) so I know what he's doing. This way, I can at least see what he's getting ......It's a daily up and down, trying to stay a head of them, but at least he's still somewhat independent, although forgetful, and anxious when he can't do things. Best, hope this helps. Karla

@2me
Hello: Good point, how indeed to tell if the meds are working, since they won't make them better.
We tried 2 different meds for my husband and the way I could tell they weren't working for him, is that he suddenly got much worse, with both meds. The meds aren't supposed to make them better, just to hold them steady.
Hopefully the meds work for others.

@2me I just completely read your note.......I speed read, and then I have to go back over it again. Yikes, I need another cup of coffee. I was told by someone in the neurologist office, that it wasn't until the 16th or so infusion, that she noticed a change in her husband. He was able to fill out a form completely which he couldn't do before. I think the infusions and their success is dependent upon the person taking them, where he or she is in the early on MCI stage, etc. I do see he's not as forgetful on things, his backpack, keys, etc. But his short-term memory is still a problem even with the infusions, but that's because those infusions slow down the progress of "new" amyloid plaques, nor reverse what he had going into it. I don't know the outcome, but I do know that my husband wanted to do the infusions. So, he went into it positive, and so did I. I worry about the brain bleeding and swelling, so I've refused to air travel, worried about any swelling/bleeding (up in the air). May sound silly, but I want to be safe than sorry. Until we can work through the 18 infusions, we will then evaluate and see the outcome. Thank you for sharing, and thank you for supporting me and answering. We get so much from this when others are willing to write about what's happening with them.......Best, Karla

This IS super hard- dont be so rough on yourself— you’ve got this— each day we get a little better at dealing with it…you are in NO way, alone!

@kjc48 Hi Karla, Thanks for all your input about hacking and infusions!! I'm planning on getting my husband to Stanford Neuropsychology Clinic as soon as his slow go primary puts in a referral! My husband also has a sleep disorder and takes meds for anxiety - I'm sure if the clinic recommends infusions they will take into account his normal issues as well as his MCI. My husband has finally agreed to stop driving after we discussed more the "safety" for himself and others (not so much the mental part which he gets so upset about) just his poor vision, very poor hearing and slow reflexes are enough to deem him unsafe to drive. I realize I HAVE to be a part of almost everything he does now and trying to accept this "sentence" as more of a "learning project". I just found a great counselor under my insurance who has worked with families with dementia for 10 years of her 42 year experience and I am so thankful to God for her!! I also found a local support group that meets once a month which is very enlightening and I will continue to go to that. I am living in two parallel worlds; one being his mental and physical decline and the other being my own pursuit of good health and multiple fulfilling activities. It's a balancing act I'm learning all about with God's Grace. I find myself crying easily a few times a day but just let that happen as a stress release acknowledgement and move on with all that needs to be done to maintain our everyday existence. Asking for prayers as I am praying for you and all the others in this group. 💕🙏 Lori

@oneputt Hi, Lori - thank you for your insight. We’re in at the Stanford Neurology clinic; Dr. Samudra. Once you’re in, you and your hubby might benefit from sessions with the Occupational and Speech Therapy labs. Ask about it- they’ll help with some practical skills.

Might I ask who your counselor is? I have a good therapist, but she doesn’t know much about what I’m dealing with. Our bi-weekly sessions are more of a release valve for me. So that’s good. I’m looking also for someone that can be a support for both me and my husband.