Hi everyone,

My mother in law was diagnosed with Parkinson's in September. When her symptoms didn't improve with medication like we'd hoped, we took her to another neurologist last week and he diagnosed her with LBD. She isn't having the complex visual hallucinations, but she does have most of the other symptoms. While we were hoping for better news, that the condition would more easily treatable, we're relieved somewhat because at least now we know why her memory and confusion fluctuate so much on a daily or sometimes hourly basis.

We're struggling a bit with two main issues - one is living arrangements, and the other is keeping up with her requests.

We want to find suitable living arrangements for her that are safe and that she is happy with. She's somewhat in denial about her condition, as even the Parkinson's diagnosis is still fairly new. When she's having a good day, she feels strongly that she can live by herself even though both her neuro and GP have said she shouldn't. On a rough day, she really needs more help than we are able to give her.

She has so far agreed to an independent living retirement community type facility, but since there isn't a space until the end of the month, she is living with us and my brother in law/sister in law until then because she's vulnerable to falls.

We're worried that when she's having a tough day, the independent living facility won't be able to provide her with as much help as she'll need. We think assisted living would probably be the right place for her, but her opinion about housing changes day to day. When she's feeling very unwell, she will agree to almost anything that gets her more help. When she's doing fine, though, she backtracks and says that she doesn't want a stranger living in her apartment, or doesn't need to move into a facility, or will move but definitely doesn't want a studio suite (the only thing that's available).

The other issue is that both families have small children who also have lots of needs, nap schedules to adhere to, etc and therefore, we find it difficult to respond to her many requests that have to do with her social life - getting driven to see friends, getting hair done for parties, buying clothes, etc. She often waits until the last minute to tell us about these things and it's hard for us to coordinate everything while also looking after the kids. It would help us if she gave us some advanced notice, but at times perhaps it's not reasonable to think she's able to. Sometimes her confusion also doesn't help matters, as we make plans, tell her, then she gets confused or forgets but blames us for not telling her.

We're also afraid of saying we don't have time, or that we can't do it until another day because she then gets very anxious to the point of having an anxiety attack. And as a result of trying to placate her, we are stressed out and irritable because we are already very busy looking after her health needs with the numerous doctor's appointments (for LBD and other issues) as well as looking into care facilities, etc plus of course working, looking after the children, managing the house, etc.

We have tried getting home support to help out, but so far, she's disliked one of the women they sent, and she didn't like the idea of having them take her clothes shopping, for instance. I'm not sure how much of this is due to the LBD and how much is due to her personality, which was challenging even before the illness. Any advice on boundary setting when there are anxiety issues? She's taking an antidepressant with anti anxiety properties, along with the parkinson's meds.

Thanks in advance for suggestions anyone might have. Has anyone found that counselling has helped for anxiety? She has gone through many stressful events the last 5 years and I'm sure has a lot of unresolved emotions about it all.

My Mother has LBD and lives with me. A couple of ideas that may help a bit. I have a large calendar (desk size). -take the sheet for the month and hang it up -I then write everything on there- also x off the days as they pass(Mother forgets what day it is) We have a clinical psychologist that Mother sees. He has been very good both at seeing Mother and helping us.
He did the original testing and has continued to help us.
Good luck
Sharon

Thank you syt and mm. I spoke to someone at the local Parkinson's society who was extremely helpful and sent me some information on dealing with patients who have dementia. I'll read those and pass onto the rest of the family.

We also have an assessment by the local health authority next week who will have recommendations for living arrangements. From what I've found out, it seems that due to the extreme fluctuation of symptoms with LBD, it's hard to find a suitable care facility - sometimes there's just not enough help for them on the tough days, and it can be a problem if they are not always cognitively aware and able to make decisions.

Hi ehw, I am also from the west coast area - Pitt Meadows, we have just moved here recently and I would love to hear more from you. It has been my husband Henry that has been diagnosed with LBD. We just moved from Delta and it is through this move that we found the doctor that we did and that diagnosed him. I am looking for a support group around here but so far no such thing. I would love to get one started though.

My mother was moved to an independent living retirement community type facility and it graduates into full dependent living. It is in Langley and was an awesome place. She was not suffering from any form of dementia but had other issues that we knew she would never have to move out of the facility but just go to the next level as life went along. If you want more info on this just let me know.