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Tell Us About Your TrialMatch Experience!
The Alzheimer's Association TrialMatch is looking for your feedback! To help us improve the tool and better support people living with dementia, caregivers, and healthy volunteers in finding clinical studies, we invite you to complete a brief survey. The survey takes less than five minutes to complete, and your input will…
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Just need to talk to my friends (220)
Welcome to July!! One of my least favorite months because it is so hot. You all be careful In the heat. Not really sure.how long it will.be before I get the test results. One place I read said 72 hours and another said up to 14 days. My doctor did say it might be that I'm.not far enough along in the incubation period to…
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Fingernails and toenails getting long
My DW won't trim her fingernails and toenails. She won't allow me to trim them either. She's not quite as bad as how Howard Hughes was. 🤣 Any ideas to this one? Thanks.
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Anniversaries, Birthdays.
I've seen many discussions on the dissappointment of forgetting Anniversaries and Birthdays. Our anniversary will be in a few weeks, my birthday a few weeks after that. My DH was always so good, rememering those days, often surprising me with thoughtful gifts or a weekend away to celebrate. I already know I will feel the…
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Hitting a break wall...
My loved one was a college adjunct professor with almost 40 years of teaching and research under her belt. And when COVID hit, she and many other adjunct professors were let go! That was when the super active brain suddenly stopped, like hitting a break wall. The depression followed, no desire to do any more studies or…
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The long journey is over
My precious dear wife passed yesterday after an 8 1/2 - year journey with early onset Alzheimer's. She was 55 when first diagnosed and had just turned 64 this month. Of course, I am deeply saddened by her passing but also relieved at the same time. It has been a long hard journey for us both. There are so many of you on…
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Infusions
My husband will have his first Leqembi infusion this week. What symptoms should I expect after the first treatment? Will he need to sleep the rest of the day? Will he be nauseated, have a headache, generally be "out of it" and how long will any of these symptoms last after the first infusion. Will these same side effects…
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Now or Later?
You know the heartbreak and loss is inevitable. You know that your LO doesn’t want to get to experience the late stages of dementia. You know that he always expressed that if he ever “got like that”, kill him. You know that he wouldn’t adhere to the lifestyle changes to keep the progression at bay. You knew that he was…
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How long it too long to be untreated (YOA)
We're rolling on 7 months now since Dx & probably two more months out from getting actual treatment. How long is too long for a 60 yo YOA patient to go without treatment? Are the infusions going to be too late to be effective? I feel like I can't press providers and health plans harder than I have been. I didn't sleep last…
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4-day Respite
Hi Friends, My dear wife is home from a 4-day respite stay. Her hospice team recommended that I take the 5-day respite that Medicare provides for caregivers of dementia patients currently on hospice. If you have not already checked on hospice services for your loved one, especially if they are into Stage 5 symptoms or…
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Surprised
Just when I think I’ve got this I am hit with a “you’ve got to be kidding me moment”. My shock rears its head and I want to scream (I didn’t) “what were you thinking”? Today my DH used a serated knife to “clean the sticky stuff” off the dining room table. He took the finish off down to bare wood at least 5 inches across!…
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I’m not me
My DH looked me square in the eye today and said “ where’s rose. “ He’s been asking now for sometime and I never know quite what to say. That got me thinking. I think I’m so scared, overwhelmed and beyond exhausted that I am in fact a completely different person. I’m not me anymore and DH knows this. But how or can you…
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What do you think caused it?
I am certain every one of you has asked this question: what caused this to happen to my loved one. I have different thoughts at different times. But if I had to pick one guess I am going to say statins. Although correlation is not causation it’s hard to ignore the uptick in statin use with the uptick of dementia over the…
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Do they know… or should they know
I think she knows she has Alzheimer’s… do I remind her when she is confused or struggling? Or never bring it up again?
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New to this site
I'm just starting this journey. DH is 83 and is in total denial. He thinks his "slippage" is due to age and nothing more. He refuses to be seen by a doctor for anything other than managing his high blood pressure. He is functional, but slowing down. The big thing is his fantasies or hallucinations. He "remembers" many…
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Tracking
As we are starting down this road I have found tons of great advice and support here. My LO still drives locally, alone every Monday to counseling and back. 12 miles each way. Today she was gone and I realized she was late by 2.5 hours. The answer was an expected "I told you I was going shopping", she did not. Am I…
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New to Caregiving
I know I'm not the Lone Ranger when it comes to facing the challenges of caring for a LO with this disease. The level of pain to see my DW struggle with tasks that 2 years ago were done without a second thought are hard to verbalize or put down on paper. As I watch her struggle, any attempt to help is quickly and curtly…
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First bowel movement disaster
I've been used to the urine accidents but this bowel movement accident is at a different level. I won't go into the details. Let's just say it took me an hour or two to clean it up. My DW was so apologetic about it. She kept saying over and over, "That wasn't me." I just reassured her that everything is okay. It took me to…
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Interacting with family
My DW was diagnosed about 2 years ago with Alzheimer’s, the Dr told me she is at “moderate dementia”. A few weeks ago her sister came and had a nice visit, but my DW told her friend that her sister and her had a screaming argument. I mentioned this to her Dr and he told me to change the subject when she has a false memory.…
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How did you meet?
As I read the challenges every day on this site, it is so depressing yet informative. I thought maybe an uplifting subject would bring some joy through our memories of our LO’s. Tell us all how you and you LO met. Here’s my story. I was 54 and just got out of a terrible 30 year marriage. I told myself that I didn’t want…
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Surprise Surprise !!!
When it was time for me to start helping my DW with taking her medications, after reading all the stories of others having difficulty with their LO taking medications, I was so happy that she took her meds without any argument. She always took a big drink and I assumed that down her throat went the meds. I was cleaning out…
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Tired
I just get tired of the almost constant criticism. Today especially bad. "You always put yourself first, never think of anyone else." It's the indignant look. I hope it doesn't escalate and wears off sooner than later. I try to focus on doing something for myself, like practice the cello. But I lose interest. Looking for…
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I am new to all of this.
My wife has been suffering short term memory loss for a few years and though I tried she would not see a doctor. Earlier this month she had a massive delusion. Forgot who I was after 49 years of marriage or that we have lived in our home for over 20 years. We went to the ER and I am still waiting to get a neurologist…
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DH doesn’t allow me to go to medical appointments
My DH of 50+ years has always been “difficult” and fiercely private. He goes to the VA for his medical care and has 100% disability rating. He has shown signs for a few years of cognitive decline and then was also in an accident 5 years ago where he had a tbi in the frontal region. He refuses to allow me to go to any of…
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Do we pretend we're not caregivers with our Loved ones?
Here I am again, to vent or get support, or ask for advice. I'm just so numb with this journey I'm not sure what I'm wanting. Andsorry in advance as I know this will be long. I need to get it all of my chest and this is the only place I can do that. My DH is in mid stage 5 probably. Still able to care for himself, but…
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Anger Management
How do you deal with the anger? Before my first sip of coffee my DH has fixated on the same subject. My head is pounding and I'm exhausted and right now I'm just angry. Hours and hours of the same questions. Accusing me of things I didn't do. Reminding myself how much I love him and this will pass but some days are so very…
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CARE AT HOME UNSUSTAINABLE
My DW’s psychiatrist and non-residential memory care activities director have recommended residency, telling me that my caring for her at home is “unsustainable” and that I’m harming myself by trying to be her sole caregiver. What form could/will that “harm” take? What could happen to me? I’m stressed, sure, but feel that…
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Where do you live
I love this site. Great people suffering alongside with me giving the best experiences and helpful information. I would love to hear where all of you live. My DW and I live in Northern California.
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Change of my getting a new car has caused the worst confusion ever
My DH and I only have one car and I do most of the driving. It’s a very old car and recently has become unreliable, so I took him with me to a dealership and bought a new car. This has caused severe confusion and he can’t seem to grasp that we now have a different car. He woke up in the middle of the night and was very…
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Is this the best we can do?
I'm sitting here waiting for my wife to die. She hasn't eaten and taken fluids in 7 days. Hospice tells me her body is shutting down and that she is not really suffering. And yet we are giving her morphine and ativan to "keep her comfortable". In this society we can put our animals "asleep" when they are terminal to keep…
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Driving - any ideas on softening the blow?
My husband has Alzheimers and is slowly getting worse. 3 doctors and some friends have said he shouldn't be driving. He went for a road test but failed the eye test so couldn't do the road test then went to an optometrist who said he was Ok to drive and sent in the forms from the DMV. We haven't heard from DMV and I made…