New here(48)

Jill N

Hi all,

I'm new here and wanted to introduce myself. We've been noticing some changes in my mom for the last few years, but we told it was "just MCI".  Recently, we were told she now is at level 5 of the FAST scale.  Most likely Alz.  We feel relief in being allowed to help and also feel like we are at the base of a mountain. My sister and I have begun the process of assisting with/managing finances and care. She is currently at home with caregivers while we search for MC options near one of us. Our current challenges are motivation for showering, longstanding eating disorder which is compounded by memory issues, and making sure she feels loved and heard while we navigate what she needs in addition to what she feels comfortable with.  Thank you in advance for welcoming me to this community.

Sjodry

Hi Jill, welcome!

You will get lots of wonderful information here. You are smart to find a MC near one of you. It is very helpful to have family nearby. Probably most everything you face on this journey with your mom, has been experienced by someone here. It is nice that you are both involved in making decisions for your mom.

Best of luck!

Sandy

Jane Smith

Jill,

You are most welcome here, but I am sorry you need to find yourself here at all. 

I can relate to your metaphor of feeling like you are starting to climb a mountain. Learning about dementia (I knew nothing before my mother was diagnosed, literally nothing) was a massively steep learning curve for me.

You might find the publication Understanding the Dementia Experience by Jennifer Ghent-Fuller helpful, as well as The 36 hour Day. The latter is a book.  The former can be purchased on Amazon but is also available in a pdf format here:  http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

I personally have also found my support groups to be invaluable.  Because Covid, they are online now but that means you can join any group anywhere and anytime, remotely.  Call fhe Alzheimer’s Association 24/7 number at 800-272-3900 and they can help you find one  the listings are online but are a pain to navigate.  

You can call them even if you don’t want a support group!  They are always kind and good listeners on the phone and you can ask for a phone appointment with a specially trained care consultant.

All best to you and your family and please don’t hesitate to ask questions. There is a wealth of experience here. 

Jill N

Thank you both, I appreciate it.

Emily 123

Hi Jill,

I could get my mom to shower if we were going 'out'.  She would not shower if she was not going anywhere (she went for walks daily around the neighborhood). Not sure if this was a power struggle, an inability to sense passing days, or both,  This was during covid, so I would  tell her we were going to the store just to get her to shower, and she'd hang out in the car playing solitaire on her iPad while I ran in to grab some groceries or some lunch for us.

Amymv

Hi Jill,

I hope you are able to find a facility for your mom very soon.  Remember once she moves that you are doing this for her safety and keep telling yourself that she will adjust.  I say this because my mom really resisted moving and it took her a while to settle in.  If your mom is like mine, she will adjust and find activities to get involved in.  Please, be gentle with yourself, choose your battles, and keep telling yourself you are only human and doing your best. 

As far as showering goes, that is a tough one!  We finally had a nice routine going with mom.  If she resisted showers at her AL facility, staff would call me from her room and I would remind her that it was shower day.  She was supposed to get two showers a week. Sometimes it worked. Sometimes it didn't.  Sometimes she'd get mad, hang up on me, BUT she had a shower! Mom was not in memory care, but they moved her closer to the nursing office on the second floor and things went fairly well.

Hang in there. AD is horrible, but you can still enjoy your mom and have very good times.  Try to have a little fun each time you see her.  I found myself tidying her room each time I visited and doing her laundry (she wouldn't let staff do it and half the time, items never made it in the hamper since she put things back in the closet or dresser), and I wish I could have let all that go and just enjoyed the time.  I couldn't stand walking into her messy room.  She'd turn housekeeping away quite often. I did finally tell myself to clean for 20-30 minutes and visit as I worked.  Then, we would play Scrabble or cards. 

Please keep us posted!