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how do you know it's the end?
DH has EOFTD and his doctor had him admitted to the geropsych unit back in March and from there he transferred to an assisted living memory care unit. His decline has been rapid as he was still testing in the MCI range in June of 2019. Then January 2020 he was at 21 on the test, December he scored a 16, and in March at his…
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Joyful Moments
Today my sister and her boyfriend came over for a backyard cookout. She orchestrated pretty much everything, hot dogs, burgers, pickles and grilled veggies. I made a pie. Thanks to Alexa, we played some wonderful mariachi music. The weather was great. The music was so festive. I asked DH to dance and HE DANCED WITH ME. We…
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New Drug - False Hope
https://apple.news/AFW4TegAmQGqetkaQvSwmVw There’s no way we’d spend $50k/year for a drug that shows such little promise. Just removing plaque isn’t going to make things better.
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DH Will Not Bathe or Shower - Update
Well, I almost don't know how to start this update post without writing a whole screenplay or movie script (which I don't know how to do ). But that's what yesterday's good news/bad news adventure feels like it requires. I am still replaying things in my mind from our latest wacky dementia experience. All's well that ends…
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Stomach pain(1)
I need some advice, especially from you medical people out there. And the "been there, did that" group. DH has complained for years that his stomach hurts. Years. Even before dementia, it was a common complaint. It's ramped up. In the past 3 years we've been to the doctor for stomach pain MANY times. He's had a…
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Tips for simplifying the journey - PLEASE SHARE
Within another post, jfkoc suggested simplification. I have tried to simplify our household with the intent of making the dementia journey more manageable. For example: * Making meals that are easy and that can be eaten for several days. My go to meals are pot roast in the slow cooker and chicken pot pie. * Replacing DH's…
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Lost and alone
this is my first experience with dementia and I am so exhausted and overwhelmed. My DH has not had a formal diagnosis, can't get into neurologist until September but he has serious short term memory issues. The memory loss is hard enough but the bouts of anger directed at me are horrible. I don't know when is the time to…
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Rapid progression
I believe the last time I posted was the night before I placed DH which was May 6. In the short time since then many things have happened but I will try to keep it brief. He has had a second and third seizure. He is no longer able to walk. He sleeps almost constantly. Hospice brought a hospital bed into the memory care…
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DH with early AD
Is letting papers pile, won’t file them, I offered to help but gets agitated. When we need the papers, I can’t find because they r not filed! Solution? I noticed that not only that he can’t remember where his drinking glass goes for daily use but he couldn’t tell the difference between a dark blue towel and a light…
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sleep study
Pre COVID, our neurologist suggested a sleep study, With my DH's rapid decline the last year, I'm not very optimistic about apnea as a cause. Has anyone see improvement with C PAP machines?
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Stirring up trouble
This is a good example of what my days are like. We have bats roosting in our wooden rafters, and carpenter bees boring holes in those same rafters. The bats (I'm talking a lot of them, this is living in the woods) are pooping on the driveway and urinating on the windows. There's absolutely nothing to do about it unless…
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Four hour trial visit to Adult Day Care; need some advice.
I have arranged for a trial visit on Tuesday (2 days from now) to an Adult Day Care Center in my town that just reopened since Covid. I would have to say my DW (age 68) is early stage 6. Starting about a year ago She know longer recognizes me as her husband. I have become a Caregiver that is on thin ice all of the time. DW…
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Intervention
I came here about 2 1/2 months ago wondering if spouse had some sort of dementia. Now convinced. I've chats with drs, he won't. He's still working part time but covers mistakes. He acknowledges memory loss but IMO he covers it up a lot. One incident recently when I walked into a room where he was and he didn't recognize…
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First in- person tour of MCF
Today I had a tour and interviewed the Executive Director of a local AL/MCF. It is a high end facility and more expensive than others I have looked at. I had a virtual tour last year, but this was the first in-person tour I have had of any facility. I came away sad and frustrated that this the best(?) I can do for my wife.…
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Just need to talk to my frfiends (143)
Morning, Already time to start another part of our thread. Be sure to read the last two posts on 142 from Sara and Sandra. Sandra, congratulations on your up-coming wedding. I hope you both will be very happy. Sounds like he likes to travel, too. Come back as often as you can and let us know how things are. Sara - you've…
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Night time confusion
Two nights ago my husband fell down getting out of bed. I helped him get up and he said he had to go to the bathroom. There was a wet urine area on the side of the bed as well as the throw rug was wet. I led him in to the bathroom and went about picking everything that had been knocked off of the night stand. He was mostly…
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Take LO along to doctor appointments?
Have any of you taken your LO with you to your doctor appointments? I can’t always get someone to stay with my wife when I go to appts and I don’t want to leave her home alone for the amount of time I would be absent. Today I’ll be taking her with me. This doctor knows my wife so I don’t see any problems. I’m just…
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feeling down(1)
DH is 91 and I am 81. He is probably moderate stage. I find I am getting extra down re: this whole situation. Recently I was diagnosed with wet macular degeneration and will have to get monthly shots in my eye. My vision is compromised. I am in charge of everything and also have had fibromyalgia and chronic fatigue…
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Delusional episodes
My husband had a delusional episode last night that lasted about 2 hours. He was very suspicious of me and thought he was someplace else, I won’t bore you with all the details. This morning he didn’t remember it until I started telling him about it, then he remembered some of it. Is it normal for a person to remember all…
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Prep for legal appt.
So Im ready to make an appointment with an elder care lawyer. Is there anything I should do in advance to be prepared for that appointment? Documents to gather, lists to make? Enquiring minds wanna know!
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Late Stage 7 - hanging on
Dh is still hanging in there with us. He is sleeping more and more though, which is worrisome. This just started the past week. Can barely get him to wake enough to feed him. Which is especially worrisome. He is still at home with me and my daughter. We have hospice aid come in 3 times a week to help bathe him. We can…
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Who to tell, what to tell them?
We are beginning to socialize, post COVID, seeing many people who have not seen my DH since his rapid decline. I don't know what to tell people,. Family are aware, but few others. If I mention dementia, people always assume (or ask about) Alzheimer's. It's exhausting to explain Alzheimer's vs dementia. My husband says he…
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Sleeping a lot. It’s new
My partner sleeps a lot for 3 days and doesn’t want to have dinner. After the daycare he sleeps about 3 hour (from 5 pm to 8), when he wakes up in the evening, he doesn’t want to eat. And he sleeps a normal night of 8 to 9 hours. One morning I even had to wake him up at 9am for the daycare. This is very strange. Suddenly…
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How it's going with DH back home
My decision to bring DH home from the psych hospital was an extremely difficult one. One thing I remind myself of, is how dynamic and unpredictable this disease and its demands are. There will likely be a time in the future when DH is better served in a nursing home. The memory care options in our community are all private…
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I've Got You
"I've got you." Three simple words that helped my husband, Bill, navigate this awful disease called Alzheimer's. These are the words that I told him when he started having memory issues 17 years ago when he was still in his late forties and we had no clue what this journey would look like. I've said these words many times…
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Profile Story
On your profile, on the Story tab, please include minimal information and make it available. Knowing something about the patient, your relationship to him/her, and how involved you are in their care and decision making, can make it easier for others to give you more informed advice.
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Let's talk day programs
I'm putting together full-time care for DH when I return to work in August. Last year's plan was pieced together with lots of people, and DS was living home and helped. He'll be moving back to college in August. I've looked into the day programs around me, as suggested by many on this board. I live in a rural area, so…
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Process for Admission
I have been visiting a lot with my kids and we will start the process of having wife admitted to Memory Care. Have a couple of homes in mind and will followup with them. However any tips on how, where or any suggestions would be appreciated. I guess this is ugly but no "I think" but real life or? This is already real and…
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Can Someone Really Get Better?
I am wondering could the meds really be helping this much? DH has been on Aricept (10mgs) and Mamentine (28mgs) and got better as soon as he started taking them. Memamtine has been increased in dosage from 7mg to 28mgs, but he was good at 7mgs. I don’t manage his meds, he functions independently as well. How can someone go…
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Websters!!
Just read a great quote in one of my grief books...thought I'd share. "If you're looking for sympathy, you'll find it between sh-- and syphilis in the dictionary" Whatever gets you thru the nite...LOL Michele