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Helpless & frustrated
Posted: Tuesday, November 5, 2019 8:49 PM
Joined: 11/5/2019
Posts: 1

My LO, my grandmother, moved in with my parents 9 months ago. She is end-stage but is pretty healthy and mobile. She is unfamiliar with my parents home as she didn't visit but twice before and is always searching to go home. Initially, we decorated her room with her familiar things and clothes, etc. but we've had to pretty much remove almost everything. She packs CONSTANTLY, even hobo-packing her night clothes from the previous evening into a jacket, ready to flee the house and my parents' solution was to remove her drawers of clothes and side table things so she has nothing TO pack. 

We've had to put locks on everything. Once, she saw the front door ajar, saw her opportunity to flee and was in the front yard before we realized. This was in the span of 30 seconds moving groceries into the house. This is my father's mother and she doesn't recognize him. This doesn't bother him as much as that when she lists her children, she forgets his name. OUCH. She has struck out at my mother, bruising her, and my mother refuses to tell my father. 

My LO can get into these absolute MANIC episodes, chanting prayers and headbutting my mother who blocks the door from her. She has issues with sanitation; sometimes leaving smears of feces on things in the bathroom. She sees it but it doesn't make it to her brain to wipe it clean. 

I seem to have more patience than my parents and that makes sense, I don't live in the home and have to deal with it 24/7. I feel like sometimes I can't make suggestions because I don't know the stress they're dealing with. 

Posted: Tuesday, November 5, 2019 8:57 PM
Joined: 5/22/2018
Posts: 359


I hope your parents have some respite/help/time out from caregiving. It is exhausting and it sounds like this is really challenging. I'm glad your are advocating for them.

This is an excellent board and you will get tons of advice here. If they have a local chapter of Alzheimer's they can attend support group meetings for caregivers, too. They should be able to get caregivers to help them in the home if they haven't already if she is Medicaid eligible which is paid for by the state (In Home Supportive Services).  But are they planning to keep her at home? This is very difficult even with someone easy like my mom, and I am chronically exhausted. I feel for your family. It is a full time plus job. 

What are their plans?  Is anyone assisting them with her?

Take care,


Posted: Wednesday, November 6, 2019 10:05 PM
Joined: 4/1/2014
Posts: 5080

Welcome but sorry you must be here. Your LO sounds like a handful now, but luckily (sadly?) this active stage will disappear to be replaced by another stage-one that is often easier to manage once you are geared up to deal with the decline and the new challenges it brings.

Taking care of a LO with dementia produces an ever changing routine because of the declines and changes, so your parents will have to be super flexible and learn new procedures for the care your LO will need. For example, it might be time for your parents to follow your LO into the bathroom and assist, or at least direct.

As the first person said-getting regular respite will go a long way in making it possible for your parents to continue to give care to your LO. If they want to join the forum as well, we will welcome them, too.

Posted: Sunday, November 10, 2019 8:12 AM
Joined: 10/12/2018
Posts: 91

Will fiblets work with your grandmother?   Maybe mom and dad could tell her that her "ride out of here" will arrive tomorrow.   In the mean time grandma can keep busy packing and look forward to tomorrow.    Anticipating "Tomorrow's ride" might occupy her for awhile. 

When my mom moved to AL (unfortunately that ship had sailed) she did the same thing.  Packing everything for her departure.   I followed her around unpacking her stuff as she was packing it back up.  I came here to vent and someone told me "what difference does it make if her stuff is packed up?  Get over it and try something different".     I sneaked a lot of her things out of the apartment so there was not such a mound of stuff at the door.   She just seemed to be happier when her things were ready and waiting at the door.  And my repeated stories about her ride arriving in about 2 hours kept her calmer.

But, it sounds like your grandma is a bit too frantic to listen and process the information.  Sorry your parents have such a lousy situation to deal with.    Good luck to you all.

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