I'm new to this, so I don't know what I don't know

I applaud you on taking classes and becoming the main caregiver for your loved one. My Mom has been diagnosed via Barrow in the Phoenix are where Muhammad Ali went. Many photos in the hallway of him and his funding for the hospital and neuro program. I lived with Mom and saw the Sundowning at night really bad. She plays pickleball daily for hours. Is in great shape. Looks amazing in pictures, but her brain has really been changing. Because of my job demands being up at 4am, I had to move out. I see her once a week for church. We have a live in RN and she tells me of the things she is doing, paranoia, messing with things in the house, anxiety at night, and now trying to leave the house at night even though Mom told us she is scared of the dark. So now I am looking at MC facilities. I would tell you to keep a journal of changes. Different things she is doing that she did not do before. Church is huge for us. I see her participate, praise and worship and say hi during our meet and greet time. She is happiest there. My Mom seems to do new changes all the time. She has 2 dogs and wants to kick the poop or pick it up with her hands. She never did that before. We have doggie bags on the porch. My Mom still knows who I am. I thank God each day I have with her. Giving me 1 more day making memories. I would say get a strong tribe of friends around you, family, or Pastors you can go to talk to. This is a rough journey. Embrace each change and day. I am now trying to figure out the meds for Mom. Dopepezil, mementine, Seroquel and escitalopram. I think they are causing diarrhea. I feel so bad for Mom. Google adult day care centers in your city. I wish you the best of luck. Love your name :)

I’ll chime in with a comment along the lines that @persevere offered:

When my dad was in the early stages, I talked with him a lot about his childhood and young adulthood. I asked him a lot of questions; I got him to tell me stories. These were phone calls, since we lived far apart at the time. Sometimes when I got off the phone I typed up the stories. Now, several years later, these are a gold mine. I can tell these stories back to him, sometimes framed as questions to prompt involvement: “Did you really like licorice when you were a little boy? Did your mother sometimes buy you candy at the store that was next to your house?” And so on.

Pictures also help. Be sure you find out now who is pictured in old family snapshots. You may need to be the keeper of those memories later on. “Oh, here’s your grandfather John Jones with his dog. I think the dog was called Brownie, is that right?”

Good job! There is so much to do in the beginning stages that lots of families deal with in the wake of a crisis. You will be better equipped to manage her care and make decisions. You've received great advice here - which is why I visit this forum often! We have no idea how long this caregiving journey would be or where it will take you. My mom was diagnosed back in 2018 (although we saw the signs before then). This can be a very long haul and can be emotionally and physically draining for caregivers, no matter your relationship with the PWD. My mom is 88YO and is in great physical health, she could live another 5 years if her brain allows it. Her mental state is not - as she suffers continual agitation, paranoia, and delusions. These are behaviors that we were not expecting, never mind all at once. Pace yourself and get as much help as possible. Be sure your family is on board with caregiving as you go along, as it can put a strain on those relationships. I've had a very hard time separating taking care of my mom to taking care of my family. I feel like I've missed out on a lot and my family has been affected in many ways. Now that my mom is in MC (9 months)I feel like I can now be better present for my husband and kids (teens) and I also work FT. I have an older sister that shares responsibility (mom lived with her for a year at one point)….but at some point it takes all hands on deck, full time. You are off to a good start. Wishing you the best.

Hi Elizabeth,

I am new to the group and watching my mom slip into a different stage now. I wondered if you could share information about the 4-hour dementia care and CPR/BLS training? Or, if anyone else could provide more information on online training resources, I would appreciate it. Thank you.

@Elizabeth Cherry, welcome to the group no adult child gas ever wanted to join.

You are off to a good start. Family/Patient education is a big thing. I would suggest you get all the resources you can for yourself & your family, not negating the need to find mom a support group for herself. Depending on how much she currently know of her disease process, you could find a grief and loss support group, or get her some psycho-social 1:1 sessions with a psychologist or licensed social worker.

I just had mom leave her ILF to move in with us. I found a day program that she could attend weekly for $25/day. I'd only use it 3 days per week. I took mom to tour it with me. Their nurse tested her by doing a standard MMSE to see which group she would best fit in with. After we left, mom said the place depresses her.

Like your mom, my mom looks amazing. She still goes to church and while at her ILF, she participated in many of the activities, even being a part of the Choral. Mom's diagnosis only betrays her to anyone who spends a minimum of half a day with her.

Your mom may not like being at the day program. At the center mom & I toured, everyone is at their varying stage of mental decline and it is sadly, very obvious.

I am a registered nurse and can honestly say, the thing I wish I knew beforehand would be how little resource & respite is available to family caregivers after their PWD is discharged back home. I would also have appreciated the foresight of building a support system immediately after diagnosis. Sadly, we have to locate any and all of the resources by ourselves.

I JUST found out, Humana has a program which is affiliated with my mom's PCP. The program affords me a Navigator. The person is like a case worker who specializes in Dementia & cognitive impairment. The founder is a doctor. She wrote a book, "Take Your Oxygen First." My assigned navigator sends me resource material and makes a monthly call to check in on ME, the caregiver, not the patient. That program, along with this group, are my 2 lifelines. Extended family is of no value and mom is so private, she would be devastated if friends knew. So, I bear this burden alone. Thankful for my husband and adult child.🥺