My 85 year old grandmother was diagnosed with LB about 4.5 years ago. My grandfather passed away about 6 years ago, and that seemed to spark this. My mother stepped in to help her. Then my grandma lost one daughter 4.5 years so, then her other daughter (my mother) passed away a couple months later. My sister and I are her caretakers, however grandma lives on her own, in assisted living. My grandma is still sharp, doesn’t need assistance for daily livings tasks, we started her with assisted living in hopes that her having access to the caregivers would help her fears. The big issue we face is has daily hallucinations, however she doesn’t think that she does, she believes that there is a man and a woman (she refers to them as “the couple”) that constantly bother her. Her walking has gotten worse, she was using a cane but is now using a walker. She has a lot of other symptoms of LB, its so sad to see her like this.

She moved into this apartment about 1.5 years ago and says that “the couple” moved in when she did, they got in above the toilet. Before this apt she was in another one in the same building, and “the couple” was there, living above her, above the cabinets. The couple has been with her, for at least, the past 5 years. She makes almost daily phone calls to management, has even called the police. Management told her that the people that lived in this apt before her, got evicted. Well grandma heard that as “we are going to evict them”. So she keeps calling management wondering when “the couple” is going to be moving. All these years my sister and I kept telling my grandma she is safe and its part of her disease. Grandma is not buying that and it turns into an argument because according to her, she does not have hallucinations. She is very sensitive to meds, any hallucination med that we have tried her on, she has a reaction. After reactions to many dementia meds, she now takes Galantamine. Advice from her dementia MD, has been change the subject, but that is not working anymore. She calls us also, sometimes says she is scared, we reassure her that she is safe. She calms down for the moment but “the couple” comes back.

I cannot talk to my grandma about “the couple” because I know they are not there. She knows that we don’t believe her, even comments that we don’t. I don’t know what to do anymore. If management gets to the point where they can’t handle her anymore, I know her next stop is going to be a dementia care facility. I don’t know if I am handling this correctly, I really try. Taking care of grandma is like taking care of a child, and I do not have any children, so I have had no practice! And advice anyone has would be appreciated. Thanks for reading this long post.

First of all, welcome to the forum. This is a difficult journey we are traveling, for sure. It does sound as though a dementia care facility is in your grandmother's future. Around here, you need to get on a waiting list so it might be a good idea for you to start looking around and researching what's available.

You will not convince your grandmother that the other people do not exist. We have quite a few 'other people' living in our house, too and no amount of rational explanation will convince my husband they are not here. God bless you for taking up this difficult task and I hope it goes well. You will certainly find this forum both helpful and supportive.

Hello and welcome. With regard to the "couple", this sounds like a delusion, not a hallucination, to me. It is an idea or belief that is fixed or keeps coming back. Unfortunately, my family has never been successful at getting rid of delusions. Hallucinations yes, but not delusions. We do like you do...we say that my loved one is safe and then redirect. It does sound to me like it is time for an ALF that specializes in dementia care. First, because they are more accustomed to these problems and secondly because this is a progressive disease. It may be easier to move her at this stage (or as soon as you and your family can find a room in a good facility). At my loved one's ALF that specializes in dementia care they don't have phones in their room which kind of solves the "making telephone calls to the management" problem. The have to ask someone to call out for them. My loved one couldn't dial a phone anyway.

Good luck to you. Annie

Welcome! Having lost your mom and aunt, and now being the caregiver for your grandmother has created a lot for you to have to deal with. My heart goes out to you.
When people live in dementia care facilities it seems to be a really different experience, because any "weird" behavior is the norm. There aren't rules or expectations to live by because all of the residents have dementia, so expectations by caregivers and management really don't exist. Helping, supporting and doing what needs to be done so these folks are safe and content is what they focus on. I think you'd be happier and so would your grandma if she were in a dementia facility. I ditto the advice the others have just given you about checking out some places and getting on a waitlist.
And you are so right about this being kind of like raising children! Only the roles are reversed, which makes it so much harder. There's a lot of support here so I hope that you come back often and post. This is a great community to be a part of when you're having to deal with this disease. Lynn

Ditto about the help you can get from this site. It has been a wonderful place for me t come and no matter when I do or why I come, I find something wonderful to take away. It is so comforting to know you are not alone in your worries or concerns. And the odd behavior that the people in your regular community might be surprised at, is our norm. Welcome.

Nan

Welcome to the LBDA forums and I am so sorry about you loss. I commend you and your sister for caring for your Grand Mother. What ever/ whoever she see's of course is very real to her and yes you can try redirection but it often doesn't work when they are so intend with their thoughts but you could try telling her you believe her but you just can't see what she does and try and engage her a bit. Sadly today many ALF's don't deal well with these type of behaviors so at some point she may end up in a more dementia type facility so as suggested maybe now is the time to start looking and maybe have something lined up.
I am glad you found the forums and I hope you visit often !

This is in reply regarding telephones. Those of U who have LO in ALF
& deal with LBD what are your opinions on a telephone in their room.
Funny all the ALF visited they all had phone outlets. Not sure I would like my Mom to have this. Negatives outweight the positive. : )
Thanks for any input.

Re: telephones in ALF rooms
By the time my dad moved into the ALF last summer he had really deteriorated mentally and physically. He didn't understand, and probably wasn't even aware, that calling me 5 - 10 times a day most days was not appropriate. I'd call him at least once a day, but his calls to me got unbearable in frequency. He also started calling a couple of his friends and my husband multiple times, even when we'd tell him something like "I'm out on the lake in my kayak and can't talk now" or whatever. I thought I was going to have to quit teaching because he'd call me all during class since days and hours became totally incomprehensible to him. He had his cell phone AND the room phone with unlimited long distance.
So, I went through all sorts of traumas over whether or not to take his cell phone away. In a way, we were lucky that this resolved itself because one of his caregivers washed and dried it in his pants pocket by mistake. By then he was sort of forgetting he had one, but he'd remember once in a while and ask me and his friend when he was going to get another one. I felt very guilty about it but my stress level (and everyone else's) decreased a lot. He was not really able to dial the regular phone at that point, as he used the speed dials on the cell and didn't have to try to remember or read phone nos.
Perhaps you can try having a phone in the room and if it doesn't work out, it can "disappear" when your LO is not watching. Do you think that would work? I hated having my dad cut off from the use of a phone but it was a nightmare when he did have one. I hope this gives you some ideas. Like everything else Lewy, it really depends on the individual and the circumstances. Just do your best to make what you think is the right decision for all of you, that's all you can do. Lynn

Thanks everyone for your feedback, much appreciated!
I don't think I could take the phone away from my grandma......yet. She talks to her friends in her building, a few remaining family members and my sister and I take turns calling her everyday to check in. So far, it seems that management is handling her, and I guess we are just waiting for them to say they cannot anymore. We've moved my grandma at least 4 times in the past 6 years. Everytime we've moved her we thought we were helping her get away from the couple, but afraid we did more harm. But can't look back, just learning from this experience. And now we try not to make too many changes. Her next move will definately be a facility that deals with this disease.