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    GrinsofNH posted an update

    While John is doing well in terms of his numbers, the pain meds and Revlimid / Decadron regimen have taken a toll on his thinking. Some call it "chemo brain" but I just call it "muddled thinking".... this from a man with a PhD in computer science is a difficult adjustment. Recently, when I was in the shower, he took a phone call and was scammed out of a good deal of money. John has lost his critical thinking skills, his ability to sort out and challenge what is put before him. This concerns me in ways unrelated to money.

    We are making sure he has plenty of hydration throughout the day, as I know that can be a problem not only for his kidneys but also for his general well-being. Other than that, does anyone have any suggestions?

    Thank you,
    Marge

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    GrinsofNH wrote on Rick's wall

    I'm not a medical expert, and I leave that to the experts with their years of training and experience. I do what I can, which is to organize our lives in such a way as to allow the doctors and nurses to do their jobs.

    My role has to do with the red tape: keeping the calendar, daily schedule, dealing with insurance, disability (employer and Social Security),paying the bills, filling prescriptions, keeping friends and relatives updated, and writing thank you notes, documenting everything and putting it all in a filing system for retrieval. Keeping receipts is vital, because you will be filing an itemized tax return next Spring to recover some of your out of pocket expenses.

    I have two pill boxes, and each has 28 slots... 7 days times 4 different time periods for each day. Each "day" can be removed separately and put in your handbag or tote. The reason I keep two such boxes is that one is this week, and one is for next week. Each Sunday, I refill the empty week, so I am always a few days ahead. I know if I need to get a refill, or ask the doctor(s) to call in a prescription before it becomes an emergency.

    I also keep a list of all meds on the computer, their dosages, how often they're taken, who prescribed them, and when my husband started taking them. Most word processors have a "table" formatter which makes this easy to set up.

    I've also set up a contacts list, well actually two. I have a professional contact list, and I have a friends and relatives list.

    I also manage who can see my husband and when and for how long. People want to be helpful, and they want to be there for you. Sometimes, however, it can be overwhelming. It can also be a danger to have too many people around the patient when they are immunocompromised (one of the new words I've learned). So I guess you can say I've become the gatekeeper. If someone has had a flu vaccine by inhalant -- not the injection which is safe -- then they got the active vaccine.... I don't let them anywhere near my husband. Similarly, if someone has had the shingles vaccine in the past year. No access.

    We've made a few purchases: an extra long hose for the shower head, to allow the patient to be seated while he showers, a cane, a walker, and a lounger that is comfortable. All these items can be claimed on your taxes, so be sure to keep receipts. If you cannot afford these items, there are organizations that will help, and you can go onto Freecycle to request items for free, so long as you are willing to pick them up.

    You will also be able to itemize the mileage you have driven for medical reasons, so keep your calendar pages. Don't toss them at the end of the calendar year. Every trip to physical therapy counts.

    Being a spouse caregiver is pretty much a full-time job, and I credit anyone who can work outside the home while doing this. Fortunately, I was already retired when my husband took ill.

    God bless you on your journey. If you keep your head about you, you will be the best resource for your spouse.