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For Joe C.: The respite conversation continued…..
I am wondering how your respite/placement plans are going? At the moment, I am on hold. I didn’t call mid-July to finalize plans; we were at the ‘shore, the weather was glorious, the kids and grandkids were otherwise occupied, we ended up staying and I was thinking, “This isn’t so bad; I can do this.” Once home, COVID…
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Accepting Alzheimer's, One Lost Memory at a Time
Philip Gutis is a former New York Times reporter who was diagnosed with early-onset Alzheimer's in 2016. https://www.nytimes.com/2018/12/04/well/mind/accepting-alzheimers-one-lost-memory-at-a-time.html Very moving. ElaineD
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Simple Solutions using Duck Tape & a Robber Band
DH just finished post hospital discharge occupational therapy (OT). One really helpful tip we learned and implemented was using colored contrasting tape on our steps, to help DH differentiate one step from another. I alternated red and neon yellow using Duck brand tape which seems textured enough. I have attached a…
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Hospice Care Confusion
Dear Alzconnected Friends: There are so many posts here about Hospice Care, especially the 'evaluation' of readiness for hospice care and also the location of care (home vs. facility outside of the home). But everyone seems to refer to HOSPICE as if it is ONE provider? This is the Mayo Clinic's discussion of Hospice Care.…
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Getting things settled for end of life
Paul is very much aware of his losses. He has recently said he wants things settled, soon. He wants to get the remaining home improvements finished. We bought our cemetery plots near his parents. He wants anything he received from his parents to be passed down to his children - exceptions being anything I want to keep. He…
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A good day
I had my first really nice day in several months . both daughters came over and brought 4 grandchildren who played in sprinkler and on the slip and slide. My younger grandaughter is disabled (Sox 5/ Lamb Shaffer syndrome) . She cant coordinate running and sliding. So the three older kids took turns pushing her down the…
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Was looking for Memory Care but found Hospice
DH was admitted to Hospice yesterday. Thursday while I was out touring a great Memory Care and going to give them a deposit , my husband was home rearranging the furniture. He paced the yard and garage throughout the day and rummaged. Very active. That night he went to bed as usual , but instead of waking up at his usual…
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‘Everything I Own”
A tender moment. Among the many things I learned here is that Bread’s “Everything I Own” was written by David Gates for his father, who I understand suffered from dementia. So I bought the sheet music. I sat down at the piano and played and sang it. My DW came into the room and sat by my side. When I finished, she looked…
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A diagnosis that isn't a diagnosis
After all the tests, including a (failed) memory test, full cardiac workup, and MRI, my husband's diagnosis is "Mild Cognitive Impairment with Amnesia". No stage given, no real information about what that means, or any ideas on progression. I was told to keep an eye on things, encourage him to do brain teasers, and follow…
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The surreal life
Had a fridge to move while I was at work. Made arrangement for Tim to move fridge. Told DH (10-50 times) Left note on counter, put note on fridge and left note for Tim. After work the fridge was gone. Me: "Did Tim come and move the fridge?" DH: "No, I moved it." Me: "Where is the note I left for Tim?" DH: "Tim took it."…
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Why am I so fearful of his anger?
This month, a dear old friend reached out and wanted to get together. I am on "vacation" this week (although work is truly my vacation from home life) and thought I would be able to spend at least 4 hours with her, just reconnecting. When I mentioned to my husband that she had reached out, he initially was supportive, but…
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Any LEO's here (or part of the Blue Family)?
My DH is retired police - work he did for most of his life before he went on disability. He held many positions from patrol to detective to eventually being patrol captain and then administrative captain. I have been a Blue Wife for my entire marriage (and still consider myself part of that family). The question I have is…
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VENT: before I lose it
I have learned not to blow up at DH, no matter how upset I am. I am especially anxious and edgy right now. I want to scream. This is what would likely come out of my mouth, directed at DH, if I weren't penning this post right now. * I want you to listen to me without interrupting me. * I want you to let me talk without…
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Shoe Recommendation
My husband has an issue with swollen ankles and feet. Trying to put his shoes on has become a real struggle. He has Lewy Body dementia and is very unstable when walking, therefore cannot wear slip on shoes. Can anyone recommend a shoe brand that would be easy for me to get on him? He will not wear sandal style and they…
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Grumpy old get off my lawn man
In the past couple of years and especially since Covid my DH has become what I call the grumpy old "get off my lawn" man. When people are walking with or without dogs down our street I always get a, "They don't live in this neighborhood, they shouldn't be walking on this street." Or, "There is a park down the street I'm…
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Stuck in the grief
Dementia has taken so much- my husband (all but his physical presence), my future, my money, my piece of mind, etc. All the loss had led to overwhelming grief. It's a grief most people can't understand, so I bear it alone. There is no ritual associated with this type of loss and very little support (in my case). I can't…
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Post Hospital Discharge Therapy - Our Experience & 2 Questions
When DH was discharged from the psych hospital in June the doctor ordered physical therapy (PT), occupational therapy (OT), speech therapy (ST), a medical social worker (MSW) and nursing care. At the same time, I hired an in home caregiver for 4 hours a day, one day per week. The home health agency (HHA) did not have a…
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Does MC delay death?
After several of his hospitalizations, by LO was placed in nursing facilities for "rehab". The last one had him so doped up that he was just breathing, and not much else. I guess it was good while he was there, because there was a resident who yelled all day and night, and you could hear her as soon as you entered the…
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Drugs v Services
This is an excellent op-ed piece regarding the hope/promise of drug treatments and the real need for physical and respite care . You may need to turn off your ad blocker. https://www.inquirer.com/opinion/commentary/alzheimers-drug-aduhelm-treatment-safety-net-20210806.html
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Support group member's husband died
We lost a support group member's husband this week. He was a physician, very nice man. He was for a time in the same memory care as DW. and I used to take his picture and send it to his wife. He died in Hospice, he was 73. We have been doing support group online. I was the host this week So I set aside a few minutes at the…
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Video Tony Bennett (Alz Dis) Singing with Lady Gaga
Tony Bennett was diagnosed with Alzheimer's Disease in 2016; while he has had losses and advancement in his disease process, he rises to the occasion with music. Here is a new video of him singing with Lady Gaga,"I Get A Kick Out Of You." Sweet and poignant.…
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Daycare Shutdown
Yesterday I received a call from DH’s daycare asking me to pick him up as they have a positive Covid case in the building. The building is a continuum care facility with 400 workers plus residents. DH was tested before I picked him up. We quarantined in our condo while waiting for results. Fortunately his test is negative.…
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California 1st State To Mandate Indoor Healthcare Workers Must Be Vaccinated
Surpised me; Ca mandates by September 30th that all indoor healthcare workers whether paid or undpaid must be vaccinated. I was a bit surprised to see that Home Health entities are not included in this mandate; or at least not spelled out as such:…
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Vaccination Mandate For NH Staff Under Fire and Debate
Nursing homes are beginning to see an upsurge in patients becoming positive for the COVID mutated Delta virus. This is seen even in patients who have been vaccinated. In several NHs fully vaccinated patients have contracted the Delta virus and have died. The single place the exposure came from appears to be from…
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Best Mask Line of thr day
You should wear a mask anytime you are near a person who you would not want to know that you had no underwear on
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Another first(1)
I've been thinking that this dementia journey is similar to the tide coming in. A wave comes in, some new symptom/behavior exhibits itself, then the wave returns to the ocean, you breathe a sigh of relief and things seem normal again. The new symptoms are so shocking that you don't realize that older ones that used to be…
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Health passport
They have just introduced the Health Passport. You need to prove that you are fully vaccinated or tested less than 2 days ago to go to the restaurant, to a show, at the hospital, in a retirement home, to take the train… We are fully vaccinated so, it isn’t a problem for us. But All people who work with vulnerable people…
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Consideration of the new Alzheimers drug (aduhelm)
My wife has been diagnosed with alzheimers (Nov 2019). She will be retested soon to confirm that she is in the early stages of the disease, and so use of aduhelm is possible. The issues are cost of course (unclear if Medicare will pay for anything), plus the side effects, plus questions from the clinical trials as to how…
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Finally Had Difficult Conversation ... Moving Forward
It's been a long time since I've posted, and given all of the problems I read about on this forum, we have it pretty good. That said, I want to share this story because it may help someone else. My DW is 56 and was diagnosed 6.5 years ago. The diagnosis was early but accurate (spinal tap and PET). The news was crushing.…
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So sad, my husband has passed
The Lord took my husband away this week after four years of battling Alzheimer. This disease came like a thief in the night. It seemed one day he was fine and then the next day things were not right with his memory. He had all the tests -- no stroke, and so the Neurologist said he had Alzheimer. He passed away in my arms.…