Mom wants to go "home"

MarieES

I am new here, but not to caring for my mom. Sorry this is long, but I want to give some background so you may be able to give me advice. I quit my job, left my 34 year old daughter when she was 24 so she could keep my house in order. We had 6 months earlier lost her dad, my husband of 31 years to suicide, and I moved to another state and into mom's house to take care of my her. It's been a hard 10 year journey that is ongoing. Mom will be 96 this month, walks small distances with a walker, and had a stroke in November last year, but pretty healthy other than her memory loss. I've made a lot of changes to keep her safe, like moving furniture, got a new stair lift, turned tub to a shower, added door, bed and chair alarms, etc. My biggest challenge now is how to keep her distracted when she wants to go home to her house, to see my dad, my sister, her mom, her kids, etc. Dad died 15 years ago, my sister 35 years ago, and her mom 50 years ago. Mom had 9 children and has lived in this house for over 64 years. I was able to explain some of these things to her before, but now she gets frustrated. She does read my dad's and her mom's obituaries for awhile, but as soon as she puts them down she says stuff like is mom on the porch, or I need to go home because the kids are there by themselves. I tell her dad or her mom went to work, to the store, to her house to be with the kids, or try to reassure her they were ok and with an adult, but sometimes she insists on going home. I'll go with her out the door to leave, but she can't go too far. I can get her back in the house by saying, it's too hard to walk, let's go in and call them. I "call" dad and tell her he says he will be back tomorrow, he misses and loves you. Sometimes I take her out in the car to find her house. She remembers her address, but insists this is not it. I'll drive her around and ask if she sees her house, then when we get back to our street, I point to the road sign and then our house number. I'll have her call one of my siblings to see if having someone else to talk to will help distract her. My issue is when this continues all day and sometimes several days or weeks what can I do different. I can't be driving her around or going outside at night. She normally will sleep from 10pm until noon, but on these bad days she may refuse to sleep here, get up numerous times throughout the night or try to call dad. At some point I am worn out and need to sleep or a break from this behavior. Every time she gets up, I get up. I don't want to frustrate her, but I sometimes run out of ideas. Wanting suggestions to keep from frustrating her while also keeping her safe. Anything I should stop doing too. Thanks for listening and any help you may have. Marie

M1

Welcome to the forum. Sounds like you have done amazingly well taking care of her. Several thoughts : 1) medication may help her agitation. Obviously at 96 one would need to be very gentle, but i would raise the issue with her doctors. A tiny dose of Seroquel or risperdal might settle her down. 2) Have you thought about a palliative care or hospice consult? Hospice is a bit different for those with dementia and could provide a lot of help. No harm in asking and she might qualify. You don't need a doctors order and can call yourself. 3) You need some breaks. hospice might help in this regard, but id also call your local council on Aging to see if there are any local programs she might qualify for. If you can afford it you can hire aides privately, but that gets expensive ($30-35 per hour) and there may be a weekly minimum.

MarieES

https://alzconnected.org/discussion/comment/205869#Comment_205869

Thank you for the thoughts! We have a Dr appointment coming up, so I can ask about the options. She's been taking Duloxetine 30mg DR since my dad died, but maybe an increase or trying a different med would help. I'll try Office of Aging again to see if I can find a local group or person to help with ideas when I'm not sure how to handle something. Sometimes you just need another opinion. Mom didn't qualify for Medicaid, so she has to pay for most help. I do get 2 hours every other Friday to get out by myself and run a few errands when we pay for a wonderful lady to come stay with mom. I also take a couple weeks in Dec to go visit my daughter and my house while 3 of my local siblings take turns staying with mom. I always feel bad asking for help, since I live with her and it's easier for me to do what is needed. I know it may not be long before I can't take care of her and we will have to put her in a place that can. I'm determined to keep her home as long as possible, even if she doesn't know she is home. I'm afraid she will go downhill quickly once we have no choice. It definitely helps knowing I have lots of people who understand and can share their experiences. Thanks to all for letting me feel welcomed among you!

JJPups

My mom is fairly advanced in her dementia too (no longer oriented to other than immediate family, does not even talk about her mom or family of origin much at this point, she is completely dependent in ADLs). Last year I moved her and dad to a small private home down the road from me as I knew her care needs were starting to outstrip my dad's abilities to take care of her (they are both in their 80s and can't really afford assisted living for her, so I am trying to do the next best thing). My point in this story is that my mom repeated phrases like "this is my home" for the longest time at the old house, she was still oriented in certain ways (could find the bathroom for example). That made the decision difficult for us to move her and I also worried she would decline. To my pleasant surprise, she did acclimate to the new house and is doing okay there. I went out of the way to place familiar objects and furniture there, decorated and painted the house in soothing colors, and a small house makes it easier for her to navigate / wayfind. Having my dad there of course matters a lot. For now, it is mostly working okay. I share this anecdote if it does become important to move your mom for your own sake. We have also started having paid caregivers coming in and she seems mostly oblivious to them being there.

MarieES

Wow, so glad to hear the move to a new house didn't make her decline. What wonderful news! When my mom had her stroke and spent 2 weeks in the hospital and rehab, she really got confused. I am going to keep my mom home as long as I can. I really am afraid she'd go downhill quickly if she had to go to a nursing home. I will have hope from your story if or when that day comes. I also have a woman who comes stay with my mom every other Friday and my mom just thinks she's visiting her. If you want any advice about ways to interact with anyone with dementia, I had someone share with me a place to get insight into the disease and I've found them very informative. You can Google Teepa Snow and see her videos. I have been doing somethings right and some I could do better. I'm learning as much as I can to make life better for her and myself. I hope your parents will do well living close by. Best of luck with your new journey!