Mom caring for adult child with memory loss

manímom

My first post. I'm 84 and my adult child was diagnosed with moderate cognitive decline 4 months ago. Has been on doctor prescribed vitamin /depression /antipsychotic protocol since then. Has anyone else got this issue?

patcolorada

I do. I am 83 caring for my 61 year old daughter. She was diagnosed 3 months ago. I am have a hard time right now but hope to learn more about it to help my daughter. She s on medication also but doesn't help much.

SDianeL

I’m not in your situation but wanted to say welcome. So sorry about your child’s diagnosis. Read the book “The 36 Hour Day” which really helped me after my husbands diagnosis. Also search online for dementia caregiving videos. Tam Cummings and Teepa Snow have good ones. Get your legal documents in order by seeing an attorney. You will need DPOA and HIPPA documents. Most people are unable to care for their loved ones as the disease progresses without help. So have a plan B. 24/7 home care or a memory care facility.

SDianeL

https://alzconnected.org/discussion/comment/252654#Comment_252654

I’m not in your situation but wanted to say welcome. So sorry about your daughter’s diagnosis. Read the book “The 36 Hour Day” which really helped me after my husbands diagnosis. Also search online for dementia caregiving videos. Tam Cummings and Teepa Snow have good ones. Get your legal documents in order by seeing an attorney. You will need DPOA and HIPPA documents. Most people are unable to care for their loved ones as the disease progresses without help. So have a plan B. 24/7 home care or a memory care facility.

sandwichone123

I'm so sorry to hear that. My dh is early 60s and his parents are in their late 80s and mid 90s, but they are not his primary caregivers. Early onset dementia often progresses more rapidly than typical. I hope you are able to find help with your adult child's care. Make sure to get legal paperwork taken care of promptly. Deciding who to appoint as primary and secondary power of attorney will be critical, as well as healthcare power of attorney.

harshedbuzz

@Cobalt
was a poster in a similar situation. You could search for her posts or maybe she'll stop by.

I'm sorry you find yourself here but pleased you found us.

HB

dianelib1

I am also caring for an adult son with rare genetic early onset Alzheimer’s. He is only 37. His dad is 79 and I am 74. We just received the diagnosis this week and are seeking any and all recommendations. I do not have to explain here how devastating this is and that alone is helpful.

H1235

Welcome. I can’t speak to you specific situation, but I have found the DBAT staging tool helpful. You local commission on aging may be able to help. Disability may be an option if they are still young enough. I agree with others that a lawyer visit is very very important.

DBAT.pdf

Iris L.

I had severe memory loss and was initially diagnosed and treated as major depression for about six years, beginning at age 37. Then systemic lupus was added to my diagnosis. Depression can be a characteristic of lupus. Many years later, at age 58, I was diagnosed as cognitive impairment not otherwise specified. I was prescribed Exelon patch and Namenda, which did improve my memory, speech and overall functioning. My neurologist continued neurocobhitive testing and I had no significant decline. A few years ago I underwent an Amviid PET Scan which indicated that I did not have elevated amyloid in my my brain and thus do not have Alzheimer's Disease. My neurologist has changed my diagnosis to adult attention deficit disorder. My short term memory is good for my age, but my long term memory is beginning to fade.

For anyone facing cognitive decline in young ages, it is imperative to search for all possible medical causes. If there is a question of depression, there should be intensive antidepressant therapy, including medication and talk therapy. Results should be seen after six to right weeks. Genetic testing to confirm for genetic causes of dementia is necessary. All of this helps with the treatment plan and with planning in general. Alzheimer's Disease has a terminal prognosis, usually shorter than for AD in an older person.

I am very fortunate in that I consult a neurologist who is very knowledgeable about diagnosing cognitive decline and dementia mimics. He continues to advise me after all these years.

Iris

JPJardinel

There is something quietly extraordinary about an 84 year old mother stepping into this role for her adult child, and I want to start by acknowledging how much love that takes, because this is not a situation most people ever imagine finding themselves in and yet here you are, four months in, already navigating medications and diagnoses and a future that looks nothing like what either of you planned. The role reversal alone, a parent caring for a child at any age, carries its own particular grief that sits differently than other caregiving relationships, and at 84 you are also managing your own health and energy in a way that adds another layer to an already complicated picture. The medication protocol your child is on, combining vitamins, antidepressants, and antipsychotics, is a fairly common starting point for moderate cognitive decline, and the fact that a doctor has been involved from the beginning is a meaningful foundation to build on even when it doesn't feel like enough. You are not alone in this, and while it is less common to find parents in this specific caregiving position, this community has people who understand the particular heartbreak of watching a child struggle with memory loss at any age. Please keep sharing here because your experience matters and so does your wellbeing, not just your child's.

I hope these references can help:

https://hopebridge.care/cognitive-decline-adult-children-what-parents-need-to-know/

https://en.wikipedia.org/wiki/Mild_cognitive_impairment

https://www.aarp.org/caregiving/medical/dementia-caregiver/