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Hi Everyone! My name is Laurie and my mom is 78 just diagnosed with early onset Alzheimer’s. She was a nurse for 50 years and I had been noticing that about 5 years ago it was Xmas day and the whole family was together. I remember her sitting down and watching her grandchildren open gifts and she had that far away look in her eyes and was not engaged at all. It took my sister and I a few years to convince her to seek out medical help. We started at her PCP then onto the initial neuropsychiatric evaluation and just recently Neuropsychiatric MD who is prescribing Kisunla. She gets her first infusion today. Her short term memory is gone. She has no idea how to use her cell phone only to call and text. She is still driving, has her long term memory intact. She asks the same questions over and over. So it is hard to know where she is at along the trajectory of this disease.
Like all of us caregivers we have lost our loved one in so many ways. She is my best friend and my right to die, but no longer has the capabilities to be an advocate. She is fixated on the traffic and road closures and wants us to pick her up for outings and appointments hours early. She has so much anxiety, that she never had and of course you can not argue with her. We have a very long road ahead.

On a side note I have been a nurse for 30 years. Early on in my career I was a hospice nurse. A good portion of our clients were the diagnosis of Alzheimer’s. You need 3 qualifiers. For example Incontinence, co-morbid disease like COPD, cancer, neurological disease and recurrent infection, weight loss. Hospice is the most under utilized benefits from Medicare. If your loved one does qualify they provide everything at not cost to you. Electric bed, bedside table, air flow mattress, commode, briefs, wipes, any dressings ow wound care needs, wheelchairs and most medications. BUT the best reason to advocate for your loved one is to be able to get behaviors under control!!! Our hospice nurses and medical staff know how to do this best!!! To be able to control depression, anxiety, agitation, aggression, pain is something that most PCP can not do and do not want to do. Families will also get a social worker, chaplain, bath aide to come in twice a week for showering and shaving and a nurse. I would urge any caregiver to reach out to the PCP to get an order. You will not regret it! If I can be a resource for anyone please reach out!
Laurie