My 90 year old mother lives with me and I try to go into her room every 45 minutes to visit, this in addition to providing assistance with all ADLS. More and more she wants me there the entire day. At some point she gets angry and becomes completely unmanageable. Is this what they mean when they say "set boundaries"?
If she cannot be placed in a Memory Care facility for whatever reason, it would be a good idea for you to read up on Alzheimer's and dementia so you can learn about the stages and what to expect in each. Tips and tricks to deal with Sundowning and saying "I want to go home" and the 2 million other issues involved with a disease of the brain. Google is a good place to start, but there are many paper books in print on the subject as well. The 36 Hour Day is an excellent book to read to get you started.
The vast majority of us cannot handle this disease alone in our homes; it's just too much, too unsafe when they start to wander, cook on the stove, or just get angry and knock things over, etc. My 92.5 year old mother lives in Memory Care and it's been a huge relief for me to know that she's safe and well cared for 24/7. The incontinence issue alone would have me at wits end if I had her in my home, so I don't know how others do it!!
All the best to you as you navigate this difficult journey with your mom.
I just have this nagging question: how much time is reasonable to sit with her throughout the day? I am an artist and in order to do my work I need to go to my art studio which is in the basement. Most often I take her with me and set her up with craft activities, she rarely has an interest in any of the things I come up with, even with assistance most activities frustrate her because she can’t reason efficiently. (I’m talking sorting buttons into color groups)If I go in the studio (or any room) without her I have a webcam on her at all times so I am able to keep an eye on her. I guess I’m looking for permission to let her sit on her own, alone with nothing to do. Thanks for your kind words, it’s the most difficult thing I’ve ever endured.
PS I use a caregiver 16 hours a week sometimes more.
My mother has mobility issues, MCI with mild dementia and short term memory problems. My biggest concern at this point is her standing up and trying to walk away without her walker and taking another bad fall. I have a baby monitor with chat capabilities in Mom's room and I "respond" anytime Mom asks for anything or even just tells me to look at something her great-grandson is doing in the yard. If I don't hear anything from the room for 30-60 minutes, I check on her and usually find her sleeping, but sometimes she's just looking at the window. Mom's room is setup so that she has a full view of the yard between my nephew's home and my own through her windows so she can enjoy watching birds feeding or the great-grandchildren and their friends playing in that yard. One great-grandson (who will be 5 this month) comes to visit at least a couple of times a day so that Grandma can read to him or to share breakfast with us or to play in the game room next to Grandma's room (she can see part of that room through the doors). He's recently gotten into lincoln logs and likes to build his creations where he can show them off to Grandma too.
Mom does better when she's in her room since I got the monitor and can "chat" with her immediately. Sometimes she apparently just wants to hear my voice. Since a Sep 2018 fall that badly damaged her knee, she spends about half her waking hours in a bedroom lift chair with her legs elevated, usually reading or watching TV. The other half of her time, Mom attends a day care 3 days a week and otherwise sits at the dining room table or on the living room recliner as I cook, clean, watch TV or work on the computer in the same room or close by - the kitchen, living room and dining room are all one big open room.
If at all possible, I suggest finding a day care for Mom or someone to come in for a few hours of in home care each week so you can work undisturbed in your studio. You need to define the boundaries on what's needed for you to continue your life and then get the support you need to continue caring for your mother.
I got her up in the morning to dress her and bathe if that was the day. She had breakfast and lunch in her room since we really didn't eat at the same time. She had dinner with us and sat and watched TV with us till she got tired which was about 9. I had a monitor so I could hear her but I never "visited" ever 45 min. My Mom was able to see people come and go on the level above her. Does Mom need to "stay" in her room?
What does that look like?
Perhaps she needs to get out of her room more often? When you say you visit her every 45 min it gave me the impression that she is alone in her room all day except when you check in on her. Perhaps that’s not what you meant. Is she bed-bound? Does she sit in a chair all day? Perhaps therapy would be helpful.
My aunt wants her aide to sit and drink coffee with her. She tells her when she’s cleaning “My house is not dirty”. “Your job is to sit with me”. The aide has to conjole her and visit a bit but still get her job done. But my aunt has a pet and various people in and out. Therapist. Nurse, family members. MOW, her aide. She has the run of her home, not just her room. She is also 92 and has dementia.
So I know your mom might not be satisfied regardless of how much time you spend with her.
We take my aunt on weekend excursions. She doesn’t remember the outings but she really enjoys them at the time. So your mom may not remember that you have spent a great deal of time with her during the day.
My advice is to determine how much time you feel is reasonable. Welcome every opportunity to have more people involved in her care.
Your living arrangement has to work for each of you, not just mom. But don’t expect your mom to remember. Have your check list to keep on track and give yourself a break. Your moms long term care depends on you caring for yourself as well.