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Where do I go from here?

lilgirlkb4589
lilgirlkb4589 Member Posts: 2
First Comment
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Hello. I am new to this forum. My mom has dementia. It started when she was 54 years old. She is now turning 62 in August. We are at the point where she has been hysterically crying for the past 9 days straight. She started Rexulti in December of 2025. We were thinking that maybe that could be part of it. She is now losing her ability to feed herself. She consistently wants to go "home" when she is home. Even when she's out of the house and looking at things or sitting with other family at their house, she wants to go home. She goes to my father's mother's house once a week, and they usually bake while listening to music. This week, she was there for an hour and burst into tears and said I want to go home. I talk to her on video chat daily. I also go there twice a week to bathe her. She gets in the shower the rest of the week, and I just make sure that her hair and everything are getting cleaned up. Over the past 9 days of crying, she screams can you please come help me. Luckily, I only live around the corner from her, so I immediately get in my car and go to her, while I'm on the phone with her. My father is there taking care of her, and they also have a son with Down Syndrome living with them. My mother's family has all passed except for one person, and she lives in NV. We call her every week and any time that my mother asks for her. We have tried calling the Office of the Aging. We are looking to get an elevator installed in the house because she has been falling a lot lately. Neither of which has called back. Anytime we reach out to anyone just for some support on how to handle things or what steps we should take, they immediately ask about our income. We know we don't qualify for most things that are offered because we can only get Medicare, and she also has insurance through her former employer, which is the federal government. I'm sorry for the ranting. I just don't know where to turn. My father is getting upset, and I'm afraid he will lose his patience or get sick himself. It has caused a feud between him and me, only once so far, but I'm sure that won't be the end of it. Since he and I are the only ones to care for her, I don't want there to be tension and for her to get worse because of it. Any advice is greatly appreciated.

Comments

  • Lethe
    Lethe Member Posts: 17
    25 Care Reactions 10 Comments 5 Insightfuls Reactions 5 Likes
    Member

    You are dealing with a lot here. If your father has not seen an elder care attorney I would definitely recommend that. He needs POA if he doesn’t already have it and they can also help him figure out the financial side of care. It seems like your mom could use some support medically as well. I would definitly call the doctor who prescribed the Rexulti and describe her crying symptoms. It sounds like your dad could use more help on a regular basis. Maybe daycare a few days to start or someone coming in the help for a few hours as needed weekly. Some geriatricians see patients younger than 65. Many have social workers as part of their practice as do hospital based memory care services (neurology, cognitive testing etc). They can be helpful in talking through what level of support is needed. I would also recommend Dasha Kiper’s book Travelers to Unimaginable Lands. It helps to understand the caregiver role and why conflict can arise as well as the neurology behind the dementia. I commend you for wanting to keep the lines of communication open with your dad. I know others will chime in here with useful suggestions. It sounds like you are already offering so much support to your parents. It’s not easy.

  • lilgirlkb4589
    lilgirlkb4589 Member Posts: 2
    First Comment
    Member

    Thank you very much for the information. I will surely look into all of these suggestions.

  • SDianeL
    SDianeL Member Posts: 3,222
    1,500 Likes 1,000 Insightfuls Reactions 2500 Comments 1,000 Care Reactions
    Member

    welcome. Sorry about your Mom. For people with dementia, home is a feeling not a physical place. She wants to go home due to her anxiety. Talk to her doctor about medication to help her. Be specific about her behaviors. When she asks to go home, fib to her or distract or redirect. Tell her you will go later or tomorrow. Redirect by changing the subject. Distract by offering a treat like ice cream. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings or Teepa Snow. Come here often for info and support. 💜

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more