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Referred to hospice
I took my husband to our doctor on Tuesday. He was wonderful. He took his time with us asking we questions to see where he was in this horrible journey. He also observed him for a while. He feels that he is in late stage Lewy Body Dementia with signs of Parkinson’s. After his evaluation he said he wanted to do a referral…
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MoCA Test Score and Stages
My husband scored a 2/30 on the MoCA test last August. I estimate he is late Stage 5. I can leave him alone for a couple of hours, at most. He is unable to cook, shop, pay bills, make a phone call, 50/50 on TV remote, short-term memory is about 30 seconds. Just wondering how your loved ones' scores matched up to stages.
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Palliative Care experiences?
I took my DH to a neurologist in our new geography. When he learned he didn’t have a GP, he referred “us” to palliative care. Kind of hospice “lite.” The brochure makes it sound awesome: a practice that focuses on person-centered care, including medical, social, spiritual, and the care partner. Any experiences or tips…
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Medical expense exclusion stays at 7.5%
The deduction floor has been 7.5 percent since 2017, a rule recently made permanent by the signing of the Consolidated Appropriations Act 2021 on December 27, 2020. https://www.forbes.com/sites/ashleaebeling/2020/12/22/medical-expense-deduction-tax-relief-is-big-win-for-seniors-in-year-end-spending-bill/?sh=57a907081b4d…
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I have no patience!
Lately I am not very patient with DH. He is still able to do things for himself but I am just tired! Tired of making breakfast, lunch and dinner, paying the bills, cleaning the house, laundry, picking up the mess that he makes, doing things he needs now, and tired of this pandemic! Just plain tired! Being tired and…
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New to forum(3)
For the past 4 months I have been reading all the posts and have finally got the nerve to join. My husband was diagnosed with AD in 2015. I must admit I thought there would be a cure in the near future. Our neurologist was on the "cutting edge" of a cure...a scientist besides being a great neurologist. We were able to do…
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Believing things that aren’t real
My DH will make up stories and be angry when I tell him no. For example, thinks we have more than one dog,or that he drove a car to the store when he clearly was with me driving he then says we must go get his car and why did I leave it. Today he walked out of a store and out on the sidewalk before I caught up with him. He…
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Escaping today's struggles
PBS recently aired "The best of 50s Pop", and I recorded it. We're now in the middle of watching it again. My wife is enjoying watching it, and it gets our minds off caregiving duties and the political state of our country. So get on youtube or get another source for music that will take you back in time. It's a great way…
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Dad is primary caregiver, but she loves and hates him
Earlier this month, I had posted about my mom's angry stage, and thanks to all of your suggestions, we were able to increase Seroquel. She takes 1 pill, 25mg, at night. It seems to be working, or at least has taken some of the anger off. She now is paranoid and consumed with the cell phone (she thinks dad is having an…
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Power of Attorney(2)
We had POA drawn up years ago for both me and my husband. I have POA for my him. He has ALZ but is still able to do a lot and is able to make some decisions. May take a lot of explaining before he makes the decision but he is still included! He is having a really hard time signing his name. How does POA work? Can I sign…
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Best predictor of Covid-19 severity - Dr. Mike Hansen(1)
Board certified pulmonologist, intensive care specialist, internal medicine physician with a YouTube channel https://www.youtube.com/watch?v=3s5UovlwpcA&list=WL&index=3
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COVID positive
I posted on 16th that DH and I got tested. Saturday I was called and told we were both positive. I was offered The transfusion of antibodies and said yes for both of us. I was so very sick but the only 1 of us that can drive bundled us both up and drove 15 miles to hospital er. We both received transfusion side by side. 1…
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Just assessed for hospice. Year 21 from symptoms beginning. FTD.
I haven't posted in a long time, but thought I would share that today we had our hospice assessment and we were able to get approved. A great burden has been lifted. We have chosen since the beginning to keep him at home if I could provide the best care. So far, it has gone pretty well I'd say. We are getting close and he…
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Simple, sweet, helpful book
My LOWD really connected with The Boy, the mole, the fox and the Horse by Charles Mackesy. I absolutely love it. You might find it inspirational and comforting as well.
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close to the end
We are nearly at the end now. Jerry is finally sleeping a lot and mostly bedridden. I was hoping to keep him as peaceful and pain free as possible. Its my bad for not giving him enough drugs at the correct dosage he NEEDS. this week has been torture for both of us because of my hang up about overdosing him. Its been gut…
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Talking to mirrors
Greetings! This is my first post. My DH is 62 and in stage 6 of EOAD. For the last several months he has been talking to mirrors and to his reflection in anything he can see it in, even car windows. Its pretty funny sometimes, he and his reflection seem to be best buddies and even joke around together frequently. Other…
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Spoon theory
Warm greetings. This is my first post. My LO is not yet diagnosed and will resist it. I read an article about spoons representing energy to be spent in a day. I’m trying it myself to see if it catches on. Does anyone else have any experience with using spoons to deal with routine or fatigue? Thank you, kind people.
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Got the first of two Pfizer vaccines
Someone was saying the injection was pretty painful. I didn't think it was any worse than a typical flu shot. When we got in the car, I asked my wife what she thought about it. She said it was the easiest injection she ever had. It's been about three hours since getting shot in the arm. Neither one of us have any soreness…
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Every solo caretaker needs a buddy
I was a scuba diver for many years. Divers dive in "buddy pairs" and each diver carries spare equipment for the buddy. I was once diving in Egypt with English paraplegic divers. They would dive in "threes" since the paraplegic could not always reach or help the the buddy divers. Sometimes they recruited "spare divers" from…
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Risperdal(1)
Has anyone dealt with risperdal? Dr is putting my DH on this for restlessness. He takes Depakote and risperdal will be added.
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My worse fear came to be
II am only caregiver and Im sick. Fever, chills,aches fever and cough. We both went for covid test today. I am miserable and he has slept all day. Now he is peeing everywhere. I sit on toilet, wet seat, floor urine , he even peed on my bladder protection pads. The whole bag! I dont think anyone can come help me until covid…
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My husband has covid and there’s nothing I can do
DH has been in a wonderful facility for almost 3 years. They have had no covid cases until a week ago and now it’s wild fire. I am grateful that my husband only has mild physical symptoms. Many are not so fortunate. He is confused, and having new/worsening dementia issues but I am able to talk with him on the phone.…
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Stay safe , its worse than I thought
I just did 21 day KIFR (known infection fatality ratio) numbers Dec 4-25 averaged 212,989 infections per day 21 day lag Dec 25- Jan 15 3014 deaths per day KIFR 1.4% (now this is an underestimate due to lags in death count.) Our current 7 death count is 3384 per day 21 day ago the 7 day infection count was 200,000 Which…
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AARP story in their monthly magazine.
Not sure if other saw the write up on the outcome of what went wrong in nursing homes because of Covid. I think it a two-part story but I think many good things will happen from this. It is truly worth reading.
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Testing
What kinds of testing has your LO had that verified the diagnosis? My DW has had an MRI, that's about it. I understand there are other tests she could undergo that might shed some additional light. I mean, is there a possibility she isn't suffering from Alzheimer's? She has had two neuropsychological tests. This recent…
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Keep safe Please
From CDC Summary What is already known about this topic? A more highly transmissible variant of SARS-CoV-2, B.1.1.7, has been detected in 10 U.S. states. What is added by this report? Modeling data indicate that B.1.1.7 has the potential to increase the U.S. pandemic trajectory in the coming months. CDC’s system for…
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I’ve Changed
Taken from “Daily Comforts for Caregivers” by Pat Samples “I’ve changed since I’ve become a caregiver. I’m not sure exactly how, but I know I’m not the same. I’ll never be the same person I was before. That’s partly a good thing. I’ve learned a lot. I’m stronger in certain ways. A few of my opinions have changed. I’ve…
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What is the name of the poop club?
I’m not sure if we ever named the club you join when you take over toileting jobs for your loved one. In any case I joined the club yesterday . I had been dreading it but actually it wasn’t so bad. I kept hearing various voices from here in my head ( white crane?) one said to just be business like and have wipes and…
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EOAD Last Step
Nine years, two months from official Dx, ( she was 55 years old ).. and we are down to the final days. I kept her at home for six years, and the last three in LTC.. In the days following Christmas ,DW was struggling with swallowing. As of noon today DW has not taken any food or fluids for 72 hours. The LTC has granted me…
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Covid vaccine for unresponsive terminal final stage
Is seems the vaccine will prolong life and suffering. Spouse is unresponsive (no sight, no hearing, no sense of touch except to open mouth if food is pressed into his lips). He wanted us to "pull the plug" well before this stage. Do I refuse the vaccine for him?